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Homecare or Long-term Care? The Balance of Care in Urban and Rural Northwestern

Ontario

by

Kerry Helen Kuluski

A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy

Department of Health Policy, Management and Evaluation University of Toronto

© Copyright by Kerry Kuluski 2010

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Homecare or Long-term Care? The Balance of Care in Urban and Rural Northwestern Ontario

Kerry Helen Kuluski Doctor of Philosophy

Department of Health Policy Management and Evaluation University of Toronto

2010

Abstract While some individuals can successfully age at home, others with similar levels of need

may require facility based long-term care (LTC). The question addressed in this thesis

is: “What factors determine whether or not older persons age at home?”

I argue that in addition to the characteristics and care needs of individuals (the demand

side); access to home and community care (H&CC) at the local level (the supply side)

determines whether or not older people receive care at home relative to other settings.

In emphasizing the role of the supply side, I draw on Neoinstitutional Theory and the

Theory of Human Ecology to examine how institutions of the state (policies, norms,

values, and organizational structures) facilitate or constrain opportunities to age at home

across urban and rural areas.

In conducting my analysis I draw on the Balance of Care (BoC) framework to analyze

the characteristics of individuals waiting for LTC placement in Thunder Bay (urban

community) and the surrounding Region (rural communities) of Northwestern Ontario.

The BoC framework provides the means to estimate the extent to which their needs

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could potentially be met in the community if home and community care (H&CC) services

were available.

The results show that individuals waiting for LTC placement in Thunder Bay

experienced higher levels of impairment than those in the Region. However in both

areas, most individuals required assistance with instrumental activities of daily living

(e.g. housekeeping, meal preparation, etc). In both areas there was limited access to

informal caregivers. If a H&CC package were to be made available, 8% of those waiting

for facility based LTC in Thunder Bay could potentially be supported safely and cost-

effectively at home compared to 50% in the surrounding Region.

The results confirm that the supply side matters. When H&CC cannot be accessed, LTC

may become the default option, particularly in rural and remote areas. If given access to

H&CC, a significant proportion of individuals can potentially age at home.

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Acknowledgments I dedicate this thesis to my parents, Rick and Dyan Kuluski who encouraged and supported me unconditionally as I wrote this thesis. I thank my sister Melanie and brother-in law Joel, my grandmother Jenny, my Babcia Helen, other members of my family and close friends. Thank you. I gratefully acknowledge Dr. A Paul Williams, my Doctoral Supervisor, for providing numerous hours of consultation and a rigorous training program that has built my character and prepared me for the chapters of my life that lie ahead. I also acknowledge the members of my thesis committee, Drs. Whitney Berta and Audrey Laporte, remarkable mentors who spent countless hours providing guidance, support, and feedback. In addition, I am grateful to Dr. Mary Lou Kelley for sharing her expertise in rural health and mentoring me at various points along my academic journey. I also extend my sincerest appreciation to my examination committee: Drs. Margaret Denton (McMaster University), Jan Barnsley (University of Toronto), and Rhonda Cockerill (University of Toronto) for sharing their valuable insights and feedback. I am grateful to my friends and colleagues from the Department of HPME, particularly Jillian Watkins, Allie Peckham, Robin Montgomery, Frances Morton-Chang, Cathy Mah, and Stephanie Soo for sharing their wisdom, and providing continuous support and encouragement. I also thank Kanecy Onate for providing ongoing administrative support. Many other faculty members, students, and staff from the Department of HPME supported me and I am extremely grateful. I acknowledge the North West Community Care Access Centre (CCAC) and North West Local Health Integration Network (LHIN), whom were instrumental in providing data, meeting space, staff, and recruitment of care managers for the thesis. I also extend my gratitude to Allie Peckham and Health Sullivan who took lead roles during the data collection phase of this research. I thank the Project Steering Committee and Expert Panel, consisting of 28 dedicated care managers and providers who committed several hours of their time to assist with project planning, data collection, and interpretation. Their valuable insights and knowledge made this thesis one of my greatest learning experiences. Last but not least, I gratefully acknowledge the Canadian Institutes of Health Research (CIHR) Institute of Aging (Fund # 481433), the CIHR Team in Community Care and Health Human Resources (Fund # CTP-79849), the Wilfred George Scott Fellowship in Gerontology, the Leon and Blossom Wigdor Award for Studies in Aging, and University of Toronto Fellowship for funding this thesis.

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Table of Contents Acknowledgments ........................................................................................................ iv Table of Contents ........................................................................................................... v List of Tables ................................................................................................................ vii List of Figures ............................................................................................................. viii List of Appendices ........................................................................................................ ix Chapter 1 Introduction .................................................................................................. 1

1.1 Background to Problem ........................................................................................ 3 Demand ................................................................................................................. 3 Supply ................................................................................................................... 5

1.2 Research Questions/Hypotheses ....................................................................... 10 1.3 Organization of the Thesis ................................................................................. 11

Chapter 2 Theories and Literature Review ................................................................ 12

2.1 Neoinstitutionalism .............................................................................................. 13 Summary of the health care sectors .................................................................... 16 Policy implications of Medicare cost shifting ....................................................... 24 Summary ............................................................................................................. 27

2.2 Human Ecology and Urban-Rural Differences .................................................... 29 Built environment- Urban-rural differences .......................................................... 30 Social environment- Informal support .................................................................. 32 Policy environment and Service environment ..................................................... 32

2.3 Demand side, Supply side, and the Balance of Care .......................................... 35 The importance of considering both demand and supply side factors ................. 35 Altering the supply side can shift the “Balance of Care” ...................................... 38 Examples from the literature- United Kingdom .................................................... 39 Examples from the literature- Ontario, Canada ................................................... 42 Examples from the literature- United States ........................................................ 43 The role of targeting ............................................................................................ 44 Direct substitutions between long-term care and homecare ................................ 45 Integrated care .................................................................................................... 46

2.4 Chapter Summary ............................................................................................... 47 Chapter 3 Methodology ............................................................................................... 49

3.1 Study Context ...................................................................................................... 49 Urban and rural areas of Northwestern Ontario .................................................. 49

3.2 Project Planning .................................................................................................. 50 3.3 Ethics Approval ................................................................................................... 52 3.4 Research Design ................................................................................................. 52 3.5 Sample ................................................................................................................ 53 3.6 Data Sources, Variables, and Analysis ............................................................... 54

Data source #1- Assessment data ...................................................................... 54 Data source #2- Cost data .................................................................................. 60

3.7 Balance of Care Methodology Steps ................................................................... 65 Step #1: Create a working sample ...................................................................... 65

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Step #2: Construct vignettes ............................................................................... 65 Step #3: Conduct simulation exercise with expert panel ..................................... 67 Step #4: Calculate care package costs ............................................................... 69 Step #5: Estimate diversion rates ........................................................................ 70

3.8 Sensitivity Analysis .............................................................................................. 71 3.9 Provider Insights ................................................................................................. 71 3.10 Summary of Methodology .................................................................................. 71

Chapter 4 Results ........................................................................................................ 73

4.1 Characteristics of Sample ................................................................................... 74 Four balance of care variables ............................................................................ 75 Stratifications ....................................................................................................... 81

4.2 Diversion Rate (the proportion of individuals for which a community-based care package was both safe and cost-effective) ................................................. 87 Characteristics of individuals in each of the above specified thresholds ............. 89 Care package similarities .................................................................................... 95 Care package differences ................................................................................... 95

4.3 Sensitivity Analysis .............................................................................................. 99 4.4 Provider Insights ................................................................................................. 99

Theme #1: Formal care ....................................................................................... 99 Theme #2: Informal care ................................................................................... 101 Theme #3: Policy .............................................................................................. 102 Summary of key insights ................................................................................... 103

4.5 Summary of Results .......................................................................................... 104 Chapter 5 Discussion and Conclusions .................................................................. 105

5.1 Thesis in Review ............................................................................................... 105 5.2 Testable Hypotheses and Findings ................................................................... 107 5.3 Theoretical Conclusions and Implications ......................................................... 112

Neoinstitutional Theory- Institutions matter ....................................................... 112 Theory of Human Ecology- Local context matters ............................................. 113

5.4 Policy Conclusions and Implications ................................................................. 114 Instrumental activities of daily living (IADLs) are critical .................................... 114 Coordination/integration of services is required ................................................ 115 Lack of formal and informal care may together magnify the risk of long-term care facility placement, particularly in rural and remote areas ........................... 117

5.5 Data Limitations ................................................................................................ 117 5.6 Recommendations for Future Research ............................................................ 119

Document and analyze rural to urban migration patterns .................................. 119 Examine alternatives to traditional homecare (service by service care provision in the home) ....................................................................................... 119 Conduct an in-depth analysis of community-based capacity in rural communities ...................................................................................................... 121 Examine the social environment ....................................................................... 121

5.7 Post Script: The Impact of this Study in Northwestern Ontario .......................... 122 Bibliography ........................................................................................................... 124

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List of Tables Table 2.1 Institutions and Structures of Medicare relative to H&CC ......................... 28 Table 3.6a Comparative Unit Costs of Community Support Services for

Thunder Bay and the Region .................................................................... 62 Table 3.6b Comparative Unit Costs of CCAC Services for Northwestern

Ontario (NWO) .......................................................................................... 63 Table 3.6c Long Term Care Home per Diems (July 1, 2008) based on Basic

Level of Accommodation .......................................................................... 64 Table 3.6d Example Case Vignette ............................................................................ 66 Table 3.6e Determining the 75th Percentile ................................................................ 67 Table 4.1a Place Waiting by Geographic Region ....................................................... 75 Table 4.1b Characteristics of Wait-listed Individuals by Geographic Region in

Northwestern Ontario ............................................................................... 76 Table 4.1c Comparison of Other Key Risk Factors to Facility-Based Long-

Term Care ................................................................................................ 80 Table 4.1d Stratifications Chart .................................................................................. 83 Table 4.1e Summary of Stratifications ........................................................................ 86 Table 4.2a Safety and Cost Efficiency Thresholds ..................................................... 89

Table 4.2b Services Consistently Drawn Upon by Thunder Bay and Region

Care Managers ......................................................................................... 94 Table 4.2c Cost Comparisons for all Care Packages ................................................. 97

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List of Figures Figure 1.1 NHS Social Care and Long Term Conditions (LTC) Model ....................... 4

Figure 2.1 CCAC In-Home Service Admissions (2007-2008) ................................... 20

Figure 4.1a Location Waiting across Northwestern Ontario ....................................... 74 Figure 4.1b Cognition ................................................................................................. 77

Figure 4.1c Activities of Daily Living ........................................................................... 77

Figure 4.1d Instrumental Activities of Daily Living ...................................................... 78

Figure 4.1e Presence of a Caregiver in the Home ..................................................... 78

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List of Appendices Appendix 2A Literature Review Strategy ................................................................. 139

Appendix 2B Long-term Care Facility Eligibility Criteria ........................................... 142

Appendix 3A Positions and Sectors of Steering Committee and Expert

Panels ................................................................................................ 143

Appendix 3B Ethics Approval .................................................................................. 145 Appendix 3C Weighted Averages for Community Support Services ........................ 146 Appendix 3D Invitation to Expert Panelists .............................................................. 149 Appendix 4A Comparison of Thunder Bay and Region Wait-list Samples

(with individuals already in LTC facilities taken out of the

analysis) ............................................................................................. 151

Appendix 4B Other Known Risk Factors for Long-term Care Facility

Placement-Urban and Rural Comparison ........................................... 152

Appendix 4C Stratifications of Wait-List Samples .................................................... 154

Appendix 4D Case Vignettes, Care Packages and Cost Comparisons ................... 156

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Chapter 1 Introduction

While the majority of older persons age successfully at home, others age in long-term

care (LTC) facilities. The central question for this thesis is “What factors determine

whether or not older persons age at home?”

While the literature often considers the characteristics and needs of older persons (the

demand side) as the sole or principal determinant of where they age, I argue that the

supply side is also important. When home and community care (H&CC) is more readily

accessible, there is a greater likelihood that older persons, even at relatively high levels

of need, can age at home. Conversely, where access to H&CC is more limited, as it

often is in rural and remote areas, there is a greater likelihood that older persons will

have to rely upon facility-based LTC.

In this thesis I analyze how demand side factors (the characteristics and needs of older

persons) and supply side factors (accessibility of H&CC at the local level) impact on the

likelihood that older persons waiting for LTC facility placement in urban and rural areas

of Northwestern Ontario (NWO) could potentially age at home. I argue that, while some

proportion of older persons in both urban and rural areas will have needs that are so

high they would not be safely and cost-effectively supported at home, significant

numbers could age at home instead of in a LTC facility if given access to needed

H&CC. I argue further, that in rural and remote areas, LTC facility placements are

triggered at lower levels of individual need precisely because H&CC is less accessible.

In emphasizing the role of the supply side, I draw on Neoinstitutional Theory and the

Theory of Human Ecology to examine how institutions (policies, norms, values, and

organizational structures) facilitate or constrain opportunities to age at home across

urban and rural areas.

Chapter 1: Introduction Kerry Kuluski

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I also draw on the Balance of Care (BoC), a framework that emphasizes the importance

of both demand and supply side factors when planning for an aging population in a local

area. I use this framework to estimate the extent to which older persons at risk of LTC

facility placement can age at home if appropriate H&CC were available. To do so, I

utilize assessment data from the Resident Assessment Instrument for Homecare (RAI-

HC) to compare key characteristics (functional and cognitive impairment and access to

an informal caregiver in the home) of individuals waiting for LTC facility placement in

urban and rural areas of NWO. I then conduct a simulation exercise in which care

managers construct community care packages required to maintain wait-listed

individuals safely in the community. In the final stage of my analysis, I calculate the

costs of the H&CC packages and compare them to the costs of care in a LTC facility. I

then estimate the proportions of wait-listed individuals that could potentially be safely

and cost-effectively “diverted” to the community. Safety and appropriateness is based

on the opinions of front line care managers who participate in the simulation exercise,

while cost-effectiveness is defined as the H&CC package being equal to or less than the

cost of facility based LTC.

Determining the appropriate threshold between care at home and facility based LTC

has important implications for both individuals and the health care system. First, many

older persons have expressed the desire to age in their own homes and communities

for as long as possible (Department of Health, 2001; Knapp, Chisholm, Astin, Lelliot, &

Audini, 1997b; Pedlar & Walker, 2004). Second, a growing body of evidence suggests

that a proportion of older persons at risk of facility based LTC can age at home, at

similar or lower system level costs, if given access to health and social care services in

the community (Challis, Chessum, Chesterman, Luckett, & Traske, 1990; Williams,

Challis et al., 2009).

The remainder of this chapter builds the context for this thesis and is divided into three

sections: section 1.1 outlines the background to the problem; section 1.2 provides the

research questions and hypotheses that will be addressed; and section 1.3 details the

organization of this thesis.


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1.1 Background to Problem

Demand

Population aging According to 2006 Canadian census data, 13.7% of the population is aged 65 and over

(Statistics Canada, 2008) and this percentage is predicted to more than double over the

next thirty years (Division of Aging and Seniors- Health Canada, 2002). Many

policymakers fear that an aging population will add additional strain to an already

overtaxed health care system. These assumptions stem from the fact that, collectively,

individuals aged 65 and over consume nearly half of provincial and territorial health care

spending. Per capita costs for individuals aged 65 and over are $9,500, compared to

$4,066 for the general Canadian population. This increases to $21,000 per capita for

individuals aged 85 and over (Canadian Institute for Health Information, 2008). Although

this may raise concern, what often goes unconsidered is that these data do not

represent all older persons. Not everyone uses health care resources extensively; in

fact very few do, even in old age (Department of Health, 2005; Hutt, Rosen, &

McCauley, 2004; Roos, Shapiro, & Roos, 1984). In other words, as a whole, individuals

aged 65 and over utilize health care resources more than younger age groups;

however, it is by a small proportion within this age group. While most older persons are

relatively healthy, a small proportion have multiple morbidities and require guided

access to a range of health and social services delivered by a range of providers

(Department of Health, 2005).

Part of the issue stems from the fact that the Canadian health care system was

designed to deal with acute, episodic care and not multiple ongoing care needs. In other

words, individuals with multiple morbidities have a range of ongoing care needs that

cannot always be adequately addressed by our current health care system. To address

this issue, a body of research outlines the ways in which resources can be used

differently to meet the needs of individuals while sustaining health care resources. For

example, resources could be appropriately targeted such that high risk clients

(individuals with a greater range of needs) receive coordinated access to a greater

range of services than lower risk clients (Weissert, Chernew, & Hirth, 2003). Targeting


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resources in this way may minimize the much-anticipated strain that an aging population

will bring to the health care system. An international body of evidence suggests that

when an integrated mix of services are targeted to individuals who would otherwise be

at risk of decline or facility based LTC, favorable outcomes at the individual and system

level can ensue (Béland et al., 2006; Branch, Coulam, & Zimmerman, 1995; Challis et

al., 1990; Challis & Hughes, 2003; Clarkson, Hughes, & Challis, 2005; Johri, Béland, &

Bergman, 2003; Tucker, Hughes, Burns, & Challis, 2008).

The National Health Service (NHS) Social Care and Long Term Conditions Model (see

Figure 1.1 below), demonstrates how resources can be targeted to correspond with the

diverse needs of older persons. This model applies to individuals with (chronic) long-

term conditions, highly applicable to individuals aged 65 and over, as 77% have at least

one chronic health condition (Health Council of Canada, 2007).

Figure 1.1 NHS Social Care and Long Term Conditions (LTC) Model

Source: Department of Health (2005)

According to this model, approximately 80% of individuals with long-term conditions are

relatively healthy and require very little support. Another 15% require disease specific

interventions using specific protocols, pathways, and/or input from multidisciplinary

teams; the remaining 3-5% are considered to be at high risk of decline, and may benefit


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from coordinated access to health and social care services (Department of Health,

2005). For some proportion of individuals, particularly within this top group, there will be

no safe alternative to LTC facility placement, while for others; home and community

care (H&CC) may offer a viable alternative if they are given access to the required

community resources. This framework for targeting resources recognizes that “one size

does not fit all” and that heterogeneity of needs should be reflected in the service

options available. In doing so, health care system costs can be moderated while

meeting the care needs of individuals (Béland et al., 2006; Branch et al., 1995; Challis

et al., 1990; Challis & Hughes, 2003; Clarkson et al., 2005; Johri et al., 2003; Tucker et

al., 2008). However, given the historically fragmented nature of Ontario’s health care

system, appropriately targeting and integrating resources has been difficult to do.

Supply

Ontario’s Healthcare System Ontario’s health care system, much like other health care systems across the developed

world, consists of multiple settings and multiple providers (both formal providers such as

physicians, nurses, and personal support workers, and informal providers including

unpaid family members, friends, and volunteers). Settings include hospitals, LTC

facilities (also referred to as nursing homes); housing with services (also called

supportive housing, retirement homes, residential care facilities, and personal care

homes) and home and community care (H&CC) services, provided both inside the

home (commonly known as homecare) and outside of the home (e.g. adult day

programs). As defined in the Long-Term Care Act (1994), H&CC includes the following

4 categories:

• professional services such as nursing, occupational therapy, physiotherapy,

social work, dietary services, and speech/language pathology;

• personal support services (assistance with activities of daily living such as

dressing, and bathing);


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• homemaking (housecleaning, laundry, meal preparation, shopping, banking, etc);

and

• community support services (meal programs, friendly visiting, home

maintenance, transportation, adult day programs, supportive housing, etc) ("Long

Term Care Act, Part 2, Section 2," 1994).

Meeting the needs of older persons who require a mix of the abovementioned services

is difficult to do given the fragmentation of H&CC services. In Ontario, the H&CC sector

consists of myriad services, providers and organizations each with varying volume

constraints, eligibility criteria, and (in some cases) user fees making it difficult to provide

a range of needed services for aging populations. The following section on institutions

sheds light on factors at the policy level that structure the H&CC sector in Ontario.

Institutions Matter

Public policies, often termed “institutions” have been described as the “rules of the

game” or the “constraints that shape behavior” (North, 1990). Such rules are

established over periods of time, and in the case of health care, shape how resources

are delivered, what resources are delivered, where, to whom, and how much. The

Canadian health care system, comprised of various sectors, each exhibits different sets

of “logic”, resulting in what has been described by many scholars as fragmented.

While Medicare (hospital and physician care) is protected by the Canada Health Act

(CHA), and offers universal coverage for medically necessary services for all insured

persons, LTC and H&CC fall outside of the protected entitlement of the CHA. This

affords provinces and territories considerable leeway in their decisions regarding the

extent to which services will be publicly available, to whom, and how much (Randall &

Williams, 2006). Although most provinces have chosen to provide some array of

homecare services at no cost to individuals who meet eligibility criteria (Coyte &

McKeever, 2001), coverage varies across Canada and is subject to volume restrictions.

In the case of Ontario, Community Care Access Centres (fourteen not-for-profit

government funded organizations) organize and fund H&CC for individuals who qualify.


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However, since budget reductions in the early 2000s, care has been limited to mostly

professional and personal support services and in some cases, homemaking services,

for individuals who demonstrate a high level of need. Community Support Services

(CSS) (e.g. transportation, day programs, respite care, meals on wheels, etc) tend to fall

outside of the realm of publicly funded homecare entitlements and are provided by an

array of mostly grassroots, not for profit (NFP), volunteer run organizations, who provide

services at no cost or for a fee scaled to income. Unlike services organized by CCACs,

CSS lack a central access point making it difficult for individuals to navigate services

and mobilize care (Denton et al., 2008). While CCAC care managers can recommend

clients to CSS there is no mechanism to coordinate services between these

organizations, even though many older persons with multiple morbidities require

services from both CCACs and CSS (Williams, Challis et al., 2009).1 Given the lack of

coordination between CCAC and CSS and varying degrees of availability across

jurisdictions, accessing H&CC can be challenging for both care recipients and care

providers.

A key point is that the institutions and structures of H&CC and LTC sectors are very

different from the Medicare sector which impact on the nature of care provided as well

as opportunities for older persons to age at home.

Local Context Matters

Geography also plays an important role in shaping the extent to which older persons

can age in their homes with services. H&CC is not consistently available even within

provinces. Rural and remote areas are typically characterized by more limited health

1 Following the data collection for this thesis, an announcement was made in December 2009 that CCAC

case managers will be granted more flexibility in their role to access community support services,

particularly adult day programs and supportive housing (Ontario Association of Community Care Access

Centres, 2009). Whether or not CCACs are granted access to the full continuum of community support is

not yet clear. Further, the extent to which this can occur in rural and remote communities where many

CSS do not yet exist raises important questions that have not yet been addressed.


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and social service infrastructure in comparison to urban areas (Canadian Homecare

Association, 2006; Commission on the Future of Health Care in Canada, 2002).

Although most older persons reside in urban areas, the rate at which the population is

aging is greater in rural areas shaped in large part by trends of out-migration of younger

age groups (Hart, Larson, & Lishner, 2005) and in-migration of older persons

(Ministerial Advisory Council on Rural Health, 2002). Currently, one in four Canadians

live in rural and remote areas (Health Canada, 2002).

Although scholars studying rural and remote populations have demonstrated that not all

rural and remote communities are “resource poor” (Golant, 2003; Keating & Phillips,

2008), a large body of evidence suggests that rural and remote populations (as a whole)

tend to face greater barriers accessing care than their urban counterparts (Canadian

Homecare Association, 2006, 2008; Commission on the Future of Health Care in

Canada, 2002); including physician and specialist care (Allan & Cloutier-Fisher, 2006;

Dansky, Brannon, Shea, Vasey, & Dirani, 1998; Kelley, Kuluski, Brownlee, & Snow,

2008; Turner Goins & Mitchell, 1999) and H&CC including transportation (Alcock,

Augus, Diem, Gallagher, & Medves, 2002; Schoenberg & Cowards, 1998; Turner Goins,

Williams, Carter, Spencer, & Solovieva, 2005), meal programs (Skinner et al., 2008),

caregiver respite programs (Skinner et al., 2008), and housing with services (e.g.

supportive housing) (Alcock et al., 2002; Coward & Krout, 1998).

In the case of LTC facility beds, another trend emerges. Rural and remote communities

tend to have a greater supply of LTC facility beds (Bolda & Seavey, 2000; Coughlin,

McBride, & Liu, 1990; Rosenthal & Fox, 2000), as well as chronic care intermediary

beds (Shaughnessy, 1994). Such trends are evident in the region of this study (North

West Local Health Integration Network, 2006). The literature demonstrates that limited

access to H&CC combined with a greater supply of LTC facility beds place rural

populations at increased risk of LTC facility placement (Coward, Duncan, &

Freudenberger, 1994; Greene, 1984; MacKnight et al., 2003). The Integrated Services

Plan of the North West LHIN (a key policy planning document for this region of study)

lends support to this connection. Within the province of Ontario, NWO has one of the

highest number of LTC beds per capita, and a lack of suitable alternatives including


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H&CC (North West Local Health Integration Network, 2006). One may assume that a

greater supply of LTC facility beds reflects a population with greater care needs;

however trends in NWO suggest otherwise. Individuals in facility based LTC have lower

levels of acuity compared to their counterparts in other parts of the province (North

West Local Health Integration Network, 2006). Similarly, researchers have

demonstrated that LTC populations in rural areas tend to be younger and healthier than

their urban counterparts (Greene, 1984; Lin et al., 2004), a reflection of insufficient

capacity in the community (Bolin, Phillips, & Hawes, 2006; Coward et al., 1994; Coward,

Netzer, & Mullens, 1996; Greene, 1984; Lin et al., 2004; MacKnight et al., 2003).

Nevertheless, other research fails to show differences between urban and rural

populations (Duncan, Coward, & Gilbert, 1997; Manitoba Study of Health and Aging,

1999; Shapiro & Tate, 1985; Tomiak, Berthelot, Guimond, & Mustard, 2000), or

suggests opposite trends (Dwyer, Barton, & Vogel, 1994; Kliebsch, Sturmer, Siebert, &

Brenner, 1998; Mustard, Finlayson, Derksen, & Berthelot, 1999). Given these seeming

disparities, additional research is required to understand factors on the supply side that

differentiate urban and rural LTC populations.

In this thesis, the supply side is considered from both a theoretical and practical

perspective. From a theoretical perspective I draw on Neoinstitutional Theory and the

Theory of Human Ecology to examine how institutions of Ontario’s health care sectors

(Medicare, H&CC, and LTC) by their very nature, facilitate or constrain opportunities to

age at home, and further, how this takes shape in rural compared to urban settings.

While I do not formally test these theories, I use them to build the context for the

research and to interpret the results.

The practical piece of this research is afforded in the simulation exercise (of the

methodology). I examine the extent to which older persons on the wait-list in NWO

could age at home if given access to a range of health and social care resources in the

community. Care managers are given the opportunity to combine resources contracted

through CCACs (professional and personal support) and services provided by CSS

(lighter support/social care) into one package. This represents a shift from the traditional


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way in which homecare is delivered in Ontario, but allows for consideration of how

current practice compares to the ideal in which barriers between CCAC and CSS are

eliminated.

In this thesis, these aspects are considered and addressed in a series of hypotheses

and associated research questions noted below.

1.2 Research Questions/Hypotheses

The central question of this thesis is:

“What factors determine whether or not older persons age at home?”

I hypothesize the following:

“In addition to demand side factors (individual characteristics and needs) the

supply side (home and community care capacity at the local level) also

determines whether or not older persons can age safely and cost-effectively at

home.”

This question and hypothesis are broken down into the following testable research

questions and associated hypotheses:

“What are the characteristics of individuals waiting for long-term care facility placement

in Thunder Bay (urban) compared to the Region (rural areas) of Northwestern Ontario?”

H1: Individuals waiting for long-term care facility placement in the Region will

have lower levels of need compared to individuals waiting for long-term care

facility placement in Thunder Bay.

H2: Individuals waiting for long-term care facility placement in the Region will be

less likely to be living with an informal caregiver (unpaid family member or friend

providing care) compared to their Thunder Bay counterparts.


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“What proportion of individuals waiting for long-term care facility placement in Thunder

Bay (urban) compared to the Region (rural communities) can safely and cost-effectively

age at home if given access to a community-based care package?”

H3: Some proportion of individuals waiting for long-term care facility placement in

Thunder Bay could potentially age safely and cost-effectively at home if

community-based care were available; in the Region, this proportion will be

higher since access to home and community care is even more limited.

1.3 Organization of the Thesis

This thesis is divided into five chapters (including this introductory chapter). Chapter 2

describes the theories used to guide the study (Neoinstitutional Theory and the Theory

of Human Ecology) and the framework on which these theories are operationalized (the

Balance of Care). I also provide key findings from the literature as they relate to these

theories. Chapter 3 outlines the methodology used to collect and analyze the data.

Chapter 4 reports the results of the analysis, and Chapter 5 contains a review of the

thesis, a review of the testable hypotheses and findings, the theoretical conclusions and

implications, the policy conclusions and implications, data limitations, recommendations

for future research, and a postscript to highlight the impact of this study in Northwestern

Ontario.

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Chapter 2 Theories and Literature Review

“What factors determine whether or not older persons age at home?”

I argue that in addition to the demand side (the needs and characteristics of older

persons), the supply side (home and community care capacity at the local level)

determines whether older persons can age at home or whether they will be directed to

facility based long-term care.

While often addressed at an applied level, questions around aging at home also have

important conceptual and theoretical dimensions. In addition to assisting in interpreting

empirical findings, theory also tells us where to begin to look for explanations.

In this thesis I draw on Neoinstitutional Theory, the Theory of Human Ecology in

addition to the Balance of Care framework each of which emphasize the importance of

broad system-level factors in determining individual-level outcomes.

In section 2.1 of this chapter I provide a brief synopsis of Neoinstitutional Theory, a

theory that considers the role of institutions (public policies, norms, values, and other

constraints that shape the behavior of individuals) on policy outcomes. I follow this with

a description of the key characteristics of Medicare (hospital and physician care) relative

to sectors outside of Medicare (LTC and H&CC). Such a description details the role of

institutions in these sectors, and how this impacts on opportunities to age at home. The

central assumption of this theory is that institutions matter and shape both policy and

individual level outcomes.

In section 2.2 I draw on the Theory of Human Ecology, a theory in which the supply side

is typically explained in the form of built environments (the home, objects in the home,

and characteristics of the broader community including the geographical landscape,

available infrastructure, amenities, and services). In this section I examine how the built

environment (specifically urban and rural communities and their varying infrastructures)

Chapter 2: Theories and Literature Review Kerry Kuluski

13

facilitate or constrain opportunities to age at home. The central assumption of this

theory is that local context matters. For example, variation in built environments can

both mediate the impact of policy and shape individual level outcomes.

In section 2.3 I outline the Balance of Care (BoC) framework and related literature to

outline what is possible when constraints on the supply side are minimized. The central

assumption of the BoC framework is that both demand and supply side factors matter

and determine the extent to which individuals can age in their own homes and

communities. This chapter concludes in section 2.4 with a summary of key findings.

The examples provided from the literature were drawn from a literature search. The

strategy used for this literature search is detailed in Appendix 2A.

2.1 Neoinstitutionalism

Institutional Theory has a long history stemming back to the Behaviorist Theories of the

1960s and 1970s (Hall & Taylor, 1996). Institutional theories explore how “institutions” –

or in the broadest sense “rules” structure the actions of individuals, organizations

(Thelen & Steinmo, 1992) and/or condition political outcomes (Tuohy, 1999). Institutions

can be informal (social constructions, cultural norms) and/or formal (policies,

regulations, etc).

Traditionally, institutionalism was criticized for focusing too narrowly on either the

characteristics of the state or on broader social forces (March & Olsen, 2006). A

resurgence of institutional theory in the 1980s coined Neoinstitutionalism or “new”

institutionalism attempts to mediate dominant societal interests and the states structural

interests (Baranek, Deber, & Williams, 2004a) in analyzing behaviors and outcomes.

Tolbert & Zucker (1996) suggest that the Neoinstitutional literature falls into one of two

categories: an examination of the process of institutionalization or the outcomes of such

processes. For instance, institutional theory has been used to describe and understand


14

organizational behaviors (Tolbert & Zucker, 1996) as well as political processes and

outcomes (Baranek, Deber, & Williams, 2004a).

Both organizational and political theorists have used this theory widely. In organizational

theory the unit of analysis is the “organizational field” --“those organizations that, in the

aggregate, constitute a recognized area of institutional life: key suppliers, resource and

product consumers, regulatory agencies, and other organizations that produce services

or products” (DiMaggio & Powell, 1983, p. 148). The majority of research in the area of

organizational theory has focused on explaining organizational stability; why institutions

in the same field appear so similar (isomorphic) (Robert & Bitektine, 2009). From this

perspective, as organizations evolve they undergo isomorphic change; a product of

coercive, mimetic, and normative pressures (informal and formal pressures from the

state; pressure to “mimic” other organizations that are deemed successful; and

established norms and rules typically found among professions) (DiMaggio & Powell,

1983). More recently, organizational theorists have used Neoinstitutional Theory to

explain organizational diversity including “strategic responses” or “workarounds” that

occur within organizations to achieve a desired outcome (Oliver, 1991).

While Organizational Theorists focus attention on organizational isomorphism and

organizational diversity, Political Scientists use this theory to understand political

behavior and outcomes. For example, Rational Choice Institutionalism (a subfield of

Neoinstitutionalism) seeks to uncover the laws of political behavior, or the “rules of the

game” (North, 1990). In this school of thought, institutional equilibrium is thought to be

the norm. Put another way, when institutions become stable they are very difficult to

change (Hay, 2006). Historical Institutionalism (another subfield of Neoinstitutionalism),

focuses attention on political outcomes (Hay, 2006). Tuohy (1999) suggests that

“periodic episodes of policy change” structure the parameters of decision-making

systems. These episodes are products of their historical contexts, and are in effect “path

dependent” suggesting that “what comes first, (even if it was in some sense ‘accidental’)

conditions what comes later” (Putnam, 1993, p.8). It is here where this thesis focuses in

an effort to build the context for this study.


15

Tuohy (1999) draws from the Neoinstitutional literature to examine institutions in relation

to healthcare in her book, “Accidental Logics: The Dynamics of Change in the Health

Care Arena in the United States, Britain and Canada.” Her framework rests on two

factors: institutional mix and structural balance. Institutional mix refers to mechanisms

of social control that structure the relationship between actors. These mechanisms can

be hierarchical (dominated by state actors), market oriented (seeks to respond to the

owners of private capital), or collegial (professionals obtain their influence through the

membership of a professional group). Structural balance refers to the balance of

influence between three groups of actors (the state, market forces, and health care

professionals).

Tuohy (1999) suggests that structures and institutions are established over time marked

by “periodic episodes of policy change” or “critical junctures.” A critical juncture in

Canadian healthcare was the establishment of universal health insurance, which was

limited to hospital and physician care (Medicare). Medicare, protected under the

principles of the Canada Health Act allows insured Canadians access to hospital and

physician care based on need and not ability to pay. Under the Canada Health Act user

fees are effectively prohibited. Although physicians cannot bill patients for their services

they were given sole discretion for medical decision-making, placing them at the heart

of the health care system (Tuohy, 1999). According to Tuohy’s framework, these public

policies, particularly the establishment of the Canada Health Act, established an

institutional mix and structural balance that minimized state and market influences in

favour or physician dominance. These institutions and structures created a Medicare

sector that has remained relatively stable over time (Tuohy, 1999).

One gap in Tuohy’s analysis is that it focuses on sectors that fall under Medicare

(hospital and physician care) and pays less attention to sectors outside of Medicare

such as LTC and H&CC, which have taken on larger roles since her book was

published in 1999. Lying outside the protected confines of the Canada Health Act, are

LTC facilities and H&CC; sectors that have greater roles for market forces and

government, culminating in unconstrained policy change. The history of these sectors,

their institutions and structures, and responses to policy change are detailed in the


16

sections that follow. Although H&CC and LTC (the focus of this thesis) do not fall within

the confines of Medicare, decisions in the Medicare sector have had a direct impact on

the ability of individuals to access H&CC.

Summary of the health care sectors

Medicare (Hospital and Physician Care)

The groundwork for Medicare was laid in 1957, when the Federal government agreed to

split the cost of hospital insurance plans with each of the provinces through the

implementation of the Hospital Insurance and Diagnostic Services Act. The Medical

Care Act introduced in 1966 added physician services as a component of health

insurance (Detsky & Naylor, 2003) representing a fundamental relationship between the

medical profession and the state (Tuohy, 1999). By 1971 all provinces had adopted a

universal Medicare program. The Canada Health Act (1984) banned extra billing by

physicians, further reinforcing the universal entitlements to hospital and physician care.

Because the provinces are responsible for the funding and delivery of health care, these

series of agreements created 13 publicly funded health insurance programs, with

receipt of Federal funds contingent on the provinces/territories abiding by the five

principles of the Canada Health Act (public administration, universality,

comprehensiveness, portability and accessibility). This piece of legislation entitles

insured Canadians access to a publicly administered and comprehensive menu of

hospital and physician services on a uniform basis anywhere in the country based on

need (Marchildon, 2006). These principles explicitly apply to hospital and physician

care; other care sectors such as LTC facilities and H&CC lie outside the umbrella of

protected universal entitlements.

Medicare is 100% publicly funded. In Ontario, hospitals are largely provided in private

not for profit hospitals by private for-profit physicians. Although physicians bill the

Ontario Health Insurance Plan (OHIP) in Ontario, they are not employees of the

government. They are entrepreneurs who exercise considerable discretion in their

practice. As outlined by Tuohy (1999), the institutions and structures of Medicare place


17

physicians at the centre in terms of decision-making, eliminate the role of market forces

(with the banning of extra billing), while minimizing state control to financing the health

care system (Tuohy, 1999). Physicians have obtained clinical autonomy, protected by

medical associations (dominant interest groups) retaining the ability to negotiate fee

schedules, determine practice locations, etc. As noted by Tuohy (1999), institutions that

are dominated by a professional interest group gives way to slow, incremental policy

change since consensus among group members is typically required.

In the sections that follow, two key points are emphasized. First, sectors outside of

Medicare (LTC facilities and H&CC) have different institutions and structures; there is a

greater role for market forces, and governments have engaged in relatively

unconstrained policy change. Since H&CC and LTC fall outside the protected

entitlements of the Canada Health Act, services and entitlements vary across

jurisdictions, with accessibility particularly strained in rural and remote communities.

Second, constraints in the Medicare sector have had a direct impact on H&CC and LTC,

impacting on the extent to which individuals can mobilize services in their own homes

and communities.

Sectors beyond Medicare- Long-term Care (LTC) Facilities

Long-term care (LTC) facilities, also referred to as nursing homes, are “designed for

people who require the availability of 24-hour nursing care and supervision within a

secure setting. In general, LTC facilities offer higher levels of personal care and support

than those typically offered by either retirement homes or supportive housing” (Ministry

of Health and Long-Term Care, 2002).

In Ontario, funding for beds is cost shared between the government and the resident.

The government pays a per diem (approximately $80 per bed per day) while the

resident provides a co-payment ($50 or more depending on the level of

accommodation). LTC facilities receive full government funding if the facility operates at

97% capacity on average throughout the year (Government of Ontario, 2000). Under


18

exceptional circumstances, the government will cover up to the full cost of the LTC

facility bed if individuals are unable to pay (Marchildon, 2006).

Across Canada there is a broad mix of ownership types of LTC facilities: for-profit; not-

for profit; government; and religious. In Canada, 41% of LTC facility beds are owned

and operated by the for-profit (FP) sector, followed by equal shares between not-for-

profit (NFP) and government, and the remaining 10% are owned by religious

organizations (Berta, Laporte, Zarnett, Valdmanis, & Anderson, 2006). In Ontario, just

over half of LTC facility beds are owned and operated by the FP sector (Ministry of

Health and Long-Term Care, Health Data Branch, 2007). Since FP organizations are

accountable to their shareholders, incentives to keep these facilities running at capacity

may exist.

The supply of LTC facility beds has increased in Ontario over the past decade. In 2000,

the Ontario Health Services Restructuring Commission (HSRC) made the decision to

build and restore 20,000 LTC facility beds. This investment was questioned given that

other types of support in the home and community were not considered (Coyte, Laporte,

Baranek, & Croson, 2002). According to a review conducted by Coyte et al (2002), the

Ontario government failed to consider other factors when calculating the required

number of LTC facility beds including the preference among health care recipients to

age at home and the potential effect of compression of morbidity (a theory that suggests

that seniors will live longer and healthier lives, utilizing formal health care resources less

than predicted). When taking these factors into account, only 7,595 beds were required

(Coyte et al., 2002).

Despite the heavy investment in LTC facility beds over the past decade, individuals

continue to wait for LTC facility placement across the province of Ontario. As of

September 30, 2007, over 30,000 Ontarians were deemed eligible and waiting for

placement (Ministry of Health and Long-Term Care, Health Data Branch, 2007). On the

surface, it may appear that this reflects the need for additional beds; however, what

often goes unconsidered is that the wait-list also reflects lack of capacity in other

sectors such as H&CC. In Ontario, case managers from the Community Care Access


19

Centre (described in the next section) assess applicants for LTC. The applicant must

meet a list of objective criteria before being placed on a wait-list. These criteria, outlined

in Appendix 2B suggest that an individual can be placed onto a wait-list due to level of

need, and/or due to inadequate community-based support. This raises the question as

to what proportion of the 30,000 individuals waiting in Ontario have needs that require

such intensive support. If given access to H&CC, perhaps a proportion of individuals on

the LTC wait-lists could age at home longer. This is the essence of this thesis; to better

understand the patient composition of wait-lists and the extent to which H&CC could

substitute for facility based LTC, if appropriate services could be mobilized.

Sectors Beyond Medicare- Home and Community Care (H&CC)

As outlined in the introductory chapter, H&CC consists of myriad services including

professional services (nursing, social work, physiotherapy, etc), personal support

services (assistance with bathing and dressing), homemaking (assistance with

housecleaning, laundry, and meal preparation), and community support services (e.g.

meal programs, transportation, adult day programs, etc). H&CC aims to fulfill multiple

roles:

• maintenance and prevention- to prevent long-term functional decline;

• long-term care substitution- in place of care in a LTC facility; and

• acute care substitution- in place of care in an acute/ hospital setting) (Hollander &

Chappell, 2002).

As noted in Figure 2.1, homecare in Ontario, much like other jurisdictions has focused

primarily on the third role (acute care substitution). In response to changes in the

Medicare sector (e.g. quicker hospital discharges), combined with limited budgets,

fulfilling the other roles of homecare has proven difficult.


20

Figure 2.1 CCAC In-Home Service Admissions (2007-2008)

Source: Ontario Homecare Association (2009)

Older persons comprise two-thirds of the home care clientele in Canada (Fuller, 2001),

while the remaining third are comprised of children and adults with physical and mental

disabilities. Approximately 80 percent of homecare is provided informally by family

members, friends and volunteers (Baranek, Deber, & Williams, 2004b; Ontario Ministry

of Community and Social Services, Ontario Ministry of Health, Ontario Office for Senior

Citizens' Affairs, & Ontario Office for Disabled Persons, 1990), while the remaining 20

percent is provided by paid staff, the majority of which are home support workers

(unregulated staff) (Home Care Sector Study Corporation, 2003). Contrary to the

Medicare sector, there is no dominant regulated professional interest group in this

sector.

Some homecare services are publicly funded and provided at no cost to the care

recipient (based on eligibility) while other services are cost shared between government

and the care recipient, provided by private insurance, or paid directly out-of-pocket by

the consumer (Commission on the Future of Health Care in Canada, 2002). All

provinces have some level of publicly funded homecare; however in the absence of

legislation (e.g. Canada Health Act), provinces have considerable latitude in

determining the public share for homecare services. For instance, provinces are able to


21

introduce user fees, eligibility requirements and decrease service volumes at their own

discretion.

Professional, personal support and homemaking are organized and contracted by

Community Care Access Centres (CCACs) while community support services (CSS)

are organized and provided by an array of mainly grass roots, NFP and volunteer

organizations.

1) Community-Care Access Centres (CCACs) The Ontario government introduced the CCAC Model in 1995, a market-centered

approach to H&CC. CCACs are not-for-profit agencies that provide one-stop-shopping

to a limited range of community-based services. They receive 100% of their operating

funds from the Ministry of Health and Long-Term Care (Ontario Association of

Community Care Access Centres, 2004) to procure professional support (nursing,

rehabilitation, etc) or personal support (assistance with activities of daily living such as

eating, dressing and bathing), which may be topped up with homemaking services for

eligible clients. The CCACs award homecare contracts to agencies through a

competition bidding process referred to as managed competition. According to the

studies detailed in this section, managed competition has created greater fragmentation

among services and providers in Ontario’s H&CC sector. Since this thesis emphasizes

the fragmentation of services and organizations in the H&CC sector, details on the

impact of managed competition on the H&CC sector are provided here.

CCACs are mandated to purchase care that reflects “the best quality at the lowest

price,” although “quality” has been difficult to measure (Caplan, 2005). Proponents of

managed competition argue that private markets lead to cost efficiencies, better choice

for consumers and innovation of services. This point of view assumes that the market is

better equipped than government to respond to health care system inefficiencies. On

the other hand, opponents of private markets and managed competition argue that

quality of care and access to services are compromised and subsequently lead to


22

increasing health care costs (Commission on the Future of Health Care in Canada,

2002; Evans, 1984; Kuttner, 1998).

Increasing costs were noted in a study by Randall & Williams (2006) who examined the

impact of managed competition on low-volume, highly specialized rehabilitation service

providers. When competition among providers was insufficient, particularly outside of

urban areas, costs soared and access subsequently decreased.

Other documented challenges relate to satisfaction and retention of homecare workers.

Between 1996 and 2001, a study of 620 Ontario homecare workers in three not-for-

profit agencies noted extremely high turnover of staff (54% of nursing staff and 50% of

personal support workers) due to unsatisfactory working conditions including low

wages, lack of hours and little guarantee over hours and patients (Denton, Zeytinoglu,

Davies, & Hunter, 2006). Unsatisfactory working conditions was also one of the main

issues cited by homecare workers in a review of CCAC procurement (Caplan, 2005).

In a 1996 study of two rural Ontario towns, providers described managed competition as

a term that “falsely implied care for people, but really referred to care driven by

economics” (Cloutier-Fisher & Joseph, 2000, p.5). Providers indicated that there was a

poor community-hospital relationship, leading to inappropriate use of resources (e.g.

premature LTC facility admissions). They also felt that managed competition favored the

FP sector and essentially made providers “compete” for contracts, which limited the

sharing of best practices. Users expressed concern over continuity of care and having

to pay for care that was available prior to the introduction of this model (Cloutier-Fisher

& Joseph, 2000).

Research has also highlighted the specific impact of managed competition in rural and

remote areas. Research by Skinner & Rosenberg (2006) outlined the “rural limits” to

market based reforms. They concluded that managed competition had added

challenges to an already strained H&CC sector. The request for proposals (RFP)

required from agencies by CCACs under the managed competition model forced

agencies to compete for contracts. In order to be competitive, organizations were

restructured and eligibility criteria tightened, placing increasing pressure on volunteers


23

and informal caregivers to fill the gap. The ability of volunteers and family members to

meet these demands was questioned given growing trends of out-migration of young

adults, coupled with an aging population. Other limitations to market based reforms

were highlighted by Leipert et al (2007) who demonstrated that when care providers

were hired, they were not necessarily located closest to the care recipient

(geographically speaking) which compromised the time spent with the client and quality

of care provided.

Five years following the inception of the CCAC model, the Ontario government

introduced a series of cost containment measures. The Ministry of Health and Long-

Term Care froze CCAC funding for the 2001-2002 and 2002-2003 fiscal years at the

2000-2001 levels. In response to CCAC budget overruns, the government introduced

Bill 46 and the Public Accountability Act, preventing CCACs from operating with a

deficit. Ontario Regulation 386/99 also forced CCACs to reduce service volumes and

tighten eligibility criteria (Caplan, 2005). This regulation limited the amount of

homemaking and personal support hours provided to each client. In response, CCACs

tightened eligibility criteria, which in turn, catered to individuals with post-acute needs. A

follow-up report by the Ontario Provincial Auditor reported that homemaking hours

decreased by 30% and in-home nursing visits by 22% from 2001-2002 to 2002-2003

(Ministry of Health and Long-Term Care, 2004). Although the Ontario government

increased CCAC funding in 2004, most of the dollars were earmarked to post-acute

clients.

A recent revision of the Long-term Care Act allows CCACs to grant additional hours of

care (up to 120 hours per month compared to the usual 60 hours per month maximum)

for individuals who are at the end stages of life or on the wait-list for LTC facility

placement ("Ontario Regulation 164/08 made under the Long-Term Care Act," 2008).

These additional hours can be allotted to personal care and /or homemaking. Despite

this promising policy change, the H&CC sector continues to operate in a siloed fashion,

with professional homecare (organized by the CCAC) on the one hand and community

support services (a patchwork of lighter support services described in the next section)


24

operating on the other, with no formal linkage between the two, making it difficult for

care managers to integrate services in a flexible, seamless fashion.

2) Community Support Services (CSS) While CCACs contract professional and personal support services to assist with

activities of daily living, community support services (CSS) generally cater to

instrumental activities of daily living, (lighter or “soft” services), including and not limited

assistance with meals (meals on wheels, congregate dining), transportation, friendly

visiting, housekeeping, security checks, adult day programs, caregiver respite etc. A

combination of funding from the Ministry of Health and Long-Term Care, outside

donations, and client fees funds this sector. CSS do not fall under one umbrella like the

CCAC model. Instead, they consist of a patchwork of mainly grassroots, not-for-profit

and charitable organizations, providing services at no cost to the client or for a fee

scaled to the clients income (Baranek, Deber, & Williams, 1999). This stream of

services is therefore less stable.

There are no formal linkages between CCAC contracted services and CSS

organizations despite the necessity of both types of services for some proportion of

older persons (see Chapter 1). Such divisions became particularly pronounced during

the 1990s and 2000s when the H&CC was faced with increasing demands in response

to changes in the Medicare sector.

Policy implications of Medicare cost shifting

Cost shifting from Medicare to other sectors intensified from a series of retrenchment

policies introduced in the mid 1990s. In 1996, the Chrétien government introduced the

Canada Health and Social Transfer (CHST) to consolidate the Canada Assistance Plan

(funding for social assistance) and the Established Program Financing Act (funding for

Medicare and education) into one block transfer comprised of cash and tax points.

Although the CHST was framed as a mechanism to increase provincial flexibility,

contributions shrunk by 6 billion dollars two years following inception (Ingelhart, 2000).


25

In response, provincial governments continued to engage in a series of reforms to curb

costs.

For example, the Ontario government appointed the Health Services Restructuring

Commission in 1996 with a four year mandate to 1) close/merge hospitals and 2)

provide recommendations on how other sectors of the health care system (LTC facilities

and H&CC) could be restructured (Ontario Health Services Restructuring Commission,

2000). During this period of restructuring, the equivalent of 40 hospitals and 10,000

hospital beds closed (Ontario Health Services Restructuring Commission, 2000),

hospital admissions decreased by 33 percent, medical school admission restrictions

were enforced and many full time nursing positions became part time/seasonal contract

positions (Ingelhart, 2000). At the same time, the pharmaceutical and technological

industries flourished allowing care that was once hospital based to be delivered in the

community or on an outpatient/ambulatory basis.

As care shifted from the hospital to the community, the mismatch between demand and

supply was articulated by the Federal Health Minister of the time, Alan Rock. In an

interview2 quoted in a paper by Ingelhart (2000, p. 2011) Minister Rock noted:

“We have not recognized the corresponding need to increase home and

community care supports…What’s more, our system has not, in my view,

devoted sufficient resources to the whole spectrum of community care, from pre-

acute to post acute care, to supportive housing for the frail elderly, to long-term

care, to palliative care for those who want to die at home.”

During this time, changes occurred in H&CC and LTC in Ontario including the

emergence of the CCAC market based homecare model of managed competition and

the decision to build and restore 20,000 LTC facility beds. CCACs were forced to meet

increasing demand for post-acute care leaving little room for other clients requiring long-

term services (Daly, 2007). Responsibilities were downloaded from CCAC to CSS to

shoulder the burden. Since CSS budgets were also constrained, care shifted even 2 The exact date of the interview was not specified.


26

further to the informal care sector (family members and friends) to meet the needs of

individuals who fell through the cracks of the newly reorganized homecare sector (Daly,

2007).

In response to the challenges to the sustainability of Medicare, key reports were written

to outline recommendations for reform including a report by the Standing Senate

Committee on Social Affairs (Kirby Report) and the Commission on the Future of Health

Care in Canada (Romanow Report). Recommendations for H&CC, albeit a minor focus

of these reports included a national homecare program for post-acute clients, a tax

credit/tax deduction for homecare consumers, an insurance fund for homecare and

benefits/job protection for family caregivers (Standing Senate Committee on Social

Affairs, 2002). The Commission on the Future of Health Care in Canada (2002)

identified homecare as the “next essential service” and recommended publicly funded

homecare for three target groups (end-of-life, mental health and post-acute). The 2003

Health Accord and 2004 10 Year Plan capitalized on these recommendations and

agreed to provide first dollar coverage for up to two weeks of homecare for each of

these identified groups. Although these recommendations placed homecare on the

policy agenda, the reform did not include support for individuals with chronic long-term

disabilities.

In 2007, the Ontario government launched a $1.1 billion Aging at Home Strategy to

sustain and create programs and services to enable individuals to age in their homes

and communities (Ministry of Health and Long-Term Care, 2007). Each of Ontario’s

Local Health Integration Networks (LHINs)3 were provided with funds to support older

persons to “age in place”, creating an opportunity to move from an acute focused

homecare model to one that encompassed long term support for individuals in their

home environment. However, since the inception of the Aging at Home Strategy,

3 Regional entities of Ontario mandated to plan, fund, organize and integrate care across the health care

continuum (excluding physicians, public health, and pharmaceuticals). There are 14 LHINs across the

province. The site of this project is the North West LHIN (the largest and most geographically dispersed

LHIN in Ontario).


27

emphasis has shifted from addressing long-term needs in the community to addressing

constraints in the Medicare sector. In 2009, a proportion of aging at home funding was

earmarked to alternate level care (ALC) patients in hospitals (medically unnecessary

hospital utilization among individuals who are unable to receive support elsewhere), and

Emergency Room (ER) patients (Ministry of Health and Long-Term Care, 2009). For the

third year of aging at home (2010-2011), 25% of funding will be used to create a fund

for the Ministry of Health and Long-term Care to address system level issues (e.g.

hospital and ALC pressures), with the remaining 75% will be devolved to the LHINs to

enhance community services and address ER wait times (North East Local Health

Integration Network, 2010). Although the majority of individuals classified as ALC, or

who use the ER are older persons (Canadian Institute for Health Information, 2009), this

initiative speaks to a pattern in Ontario health care reform; of responding to Medicare

constraints, as opposed to the long term chronic needs of populations who are aging in

their homes.

Summary

This section demonstrated two main patterns. First, the institutions and structures of

H&CC and LTC are very different from Medicare, and second, constraints in the

Medicare sector have directly impacted the other sectors. Details of these points are

outlined in Table 2.1 below.


28

Table 2.1 Institutions and Structures of Medicare relative to H&CC

Medicare Home and Community Care (H&CC)

The institutions and structures of H&CC and LTC are very different from Medicare

• State role minimized to

financing.

• Dominated by professional

interest group (physicians)

who control the extent and

pace of reform.

• Legislation bans user fees

and keeps market forces at

bay.

• Comprehensive menu of

“medically necessary

services.”

• Stronger role for government

and market forces

• No dominant professional

group (many providers are

unregulated).

• No universal entitlements to

care; user fees, volume

constraints can and have

been introduced with little

resistance.

• Fragmentation of services

within and between

jurisdictions.

Constraints in the Medicare sector have directly impacted the other sectors

• Constraints in Medicare

sector addressed through

earlier hospital discharges

forcing H&CC sector to deal

with an increasing acute

population.

• As care shifted from

Medicare to H&CC, services

were rationed in favour of

post-acute/ medical care. At

the same time, a decision

was made to build and

restore facility based LTC

beds with little consideration

for H&CC alternatives.


29

Using Ontario as an example, this section demonstrated the role of institutions and

structures in Medicare relative to other sectors (namely H&CC) which have played a

role in constraining opportunities to age at home. The section that follows examines

other constraining forces, specifically the role of context (the characteristics of one’s

environment) and how this may impact on opportunities to age at home.

2.2 Human Ecology and Urban-Rural Differences

The Theory of Human Ecology focuses on the contexts in which people live their lives

(Keating & Phillips, 2008). Dating back to the nineteenth century, this theory was

primarily used in the biological sciences. A century later, it emerged in the social

sciences. Human Ecologists assume an inextricable link between individuals and their

environments, suggesting that individuals and the environment are constantly

interacting and cannot be viewed separately. As stated by Bubolz & Sontag (1993)

organisms and the environment are “inseparable parts of a greater whole” (Bubolz &

Sontag, 1993). The “environment” takes on many meanings including:

• The Built Environment- the home and objects in the home, as well as the

characteristics of the broader community and the amenities available within. The

built environment is broken down further into:

The Community Environment - the geographical landscape-

population density and rurality;

The Service Environment -formal infrastructure such as hospitals

and community support services;

• The Social Environment- family, friends (social capital)

• The Policy Environment- norms, values, policies, and legislation

Human Ecologists suggest that environments tend to be inter-related, such that the

characteristics of one environment influence other environments. Living in a sparsely


30

populated community environment may mean limited access to the service environment

(formal services such as homecare) which impact on one’s relationship with the social

environment (family and friends). Consideration of “person-environment fit” has been

the central focus of Human Ecology literature, albeit mostly at the micro level. For

example, Powell Lawton, the founder of the Ecological Theory of Aging (a sub discipline

of Human Ecology) focused his work on the way in which individuals adapt to their

environments. He suggested that individuals with greater competencies are better able

to navigate and adapt to their environments than those who are less competent (Scheidt

& Norris- Baker, 2003). Human Ecology has also been used to understand the role of

the built environment, specifically, how neighborhood characteristics impact on the

physical and mental health of populations. These connections have been considered

among sociologists and epidemiologists (Krause, 2004; Satariano, 2006).

Gerontologists have tended to focus on how the built environment (e.g. the home and

objects in the home) shapes the quality of the aging experience. In this connection,

researchers suggest that modifying the built environment can play a role in improving

quality of life (Scheidt & Norris- Baker, 2003).

Less is known about the extent to which macro-level environments such as community

level differences (urban versus rural environments) and public policies impact on the

aging experience (Wahl & Weisman, 2003).

Built environment- Urban-rural differences

A large body of literature has compared urban and rural populations on overall health

status and access to resources. Many Canadian reports indicate that as a whole,

individuals in rural areas have lower socioeconomic status, lower educational

attainment, exhibit less healthy behaviors, and have higher mortality rates (Canadian

Institute for Health Information, 2006), in addition to higher rates of chronic disease, and

less access to healthcare than their urban counterparts (Ministerial Advisory Council on


31

Rural Health, 2002). These trends are reflected in Northwestern Ontario, the region

considered in this thesis (North West Local Health Integration Network, 2006).

The same trends are found among individuals aged 65 and over. Older individuals in

rural areas tend to have lower health status on average (Clark & Dellasega, 1998;

Cutler & Coward, 1988; Turner Goins & Mitchell, 1999) and less access to care

(Commission on the Future of Health Care in Canada, 2002), including physician care

(Allan & Cloutier-Fisher, 2006; Dansky et al., 1998; Turner Goins et al., 2005) when

compared to their urban counterparts. Access to care is further hindered by lack of

transportation (Manthorpe et al., 2008; Schoenberg & Cowards, 1998; Skinner et al.,

2008; Turner Goins et al., 2005) and long travel required on the part of consumers

seeking care (Chan, Hart, & Goodman, 2006) and care providers delivering care (Sims-

Gould & Martin-Matthews, 2008). Depending on how rural is defined, rural populations

also utilize hospitals less than their urban counterparts (Dansky et al., 1998), particularly

in the most rural and remote areas. When individuals from rural and remote areas are

hospitalized, discharge may take longer in the absence of timely access to community-

based support (Coburn, Bolda, & Keith, 2003; Martin-Matthews, 1988).

As noted in the introduction of this thesis, when comparing LTC populations, some of

the literature describes rural LTC populations as younger and less functionally impaired

than their urban counterparts (Greene, 1984; Lin et al., 2004), and as being at greater

risk of placement due to limited access to community-based resources (Bolin et al.,

2006; Coward et al., 1994; Coward et al., 1996; Greene, 1984; Lin et al., 2004;

MacKnight et al., 2003). In these cases, limited access to H&CC lowers the threshold

for LTC facility placement, if this is the only viable option.

However, these findings are inconsistent with other studies, which suggest no such

differences (Duncan et al., 1997; Manitoba Study of Health and Aging, 1999; Shapiro &

Tate, 1985; Tomiak et al., 2000), or opposite trends (Dwyer et al., 1994; Kliebsch et al.,

1998; Mustard et al., 1999). These mixed findings demand a better understanding of not

only community level differences (e.g. urban versus rural) but broader system level

factors which structure the availability and utilization of resources.


32

Social environment- Informal support

In terms of informal support, it is commonly assumed that the volunteer and informal

support sector (family members and friends) fills an important gap left by the formal

sector. Research by Skinner et al (2008) challenges this assumption. Their paper

featuring 55 key informant interviews with senior administrators from government,

health and social care institutions, voluntary services, and community groups in rural

and remote communities across Canada shed light on a declining volunteer sector

(aging and burning out of volunteers), and increasing out-migration of young adults to

seek employment. Although a strong sense of community was a prevalent theme in the

collected data, there were challenges related to economies of scale, aging populations,

and increasing demand on an already fractured service industry. Lack of municipal

services such as public transportation and basic community support services such as

caregiver respite and meal services hindered the ability of older persons to age at home

(Skinner et al., 2008).

Likewise, a study was conducted by a team of researchers at the University of Alberta,

who drew on Statistics Canada data to examine the extent to which social support was

provided across rural and remote communities across Canada. Findings revealed much

diversity in the degree to which social support was provided. In some areas only 1% of

rural residents reported providing unpaid help to older people, whereas other areas it

was as high as 56% (Research on Aging Policies and Practice, 2006).

In essence, individuals residing in rural and remote communities may have

compromised access to both formal and informal care.

Policy environment and Service environment

Although studied less frequently, Human Ecologists have noted the connections

between the policy environment and the service environment. Haldemann & Wister

(1993) outline the relationship between policy and service environments as it relates to

older persons. They described three phases of research of Ecological Theory of Aging


33

(ETA) research using Canada as a context. The first phase, institutionalization and

purpose built housing, was shaped by public investment and subsequent development

of nursing homes (which evolved from poorhouses) for individuals who could no longer

live independently. In the 1970s, the demand for such housing and associated cost

increases prompted another policy change, which imposed stricter eligibility criteria for

nursing home admission. Since the poor and socially isolated tended to be excluded,

public investments in low-income housing models ensued. In the late 1970s, additional

housing models were created to account for the heterogeneity of older persons. More

specifically, it was increasingly recognized that older persons were diverse, and had

different needs at different parts of their life trajectory. In the mid 1980s, with the

continued demand for nursing homes, and growing fiscal challenges of the state, the

public policy and focus shifted to “aging in place” with the goal of saving health care

dollars while meeting the wishes of many to age in the home and community

(Haldemann & Wister, 1993).

Similarly, Laws (1993) acknowledges the link between policy and urbanization in the

United States. The US followed a similar trajectory to that of Canada, beginning with

poorhouses, to nursing homes, culminating with increasing opportunities to age at

home, with each of these housing options linked to public policy decisions (Laws, 1993).

We see similar trends in Europe. Policy decisions in the UK have promoted LTC

utilization over home and community-based care, albeit the emphasis has since shifted.

Most notable was the Residential Allowance (RA) implemented by Prime Minister

Margaret Thatcher in 1980s. The RA was a Social Security benefit payable to local

authorities to fund accommodation costs in private sector LTC facilities. This allowance,

labeled by some scholars as a perverse incentive to institutionalize older persons,

represented a public policy decision that favoured institutional care over community-

based care. Upon reversal of this policy by the Blair Government in 2002, a study

confirmed that many individuals originally slated for LTC could age at home (Clarkson et

al., 2005). This took place in midst of the UK Community Care Reforms which focused

on deinstitutionalization (from LTC facilities to the community), strengthening of the


34

homecare sector, and care management (Challis, von Abendorff, Brown, & Hughes,

2002). The UK’s Modernizing Agenda (one aspect of the Community Care Reforms),

made several policy recommendations which included: the assignment of care

managers to the most vulnerable patients, the provision of person centered integrated

care and pooled budgets for health and social care (Weiner, Hughes, Challis, &

Pederson, 2003). These policy changes have ultimately shifted not only the site of care,

but also the manner in which care is delivered to older persons.

Likewise, in the 1980s and 1990s policymakers in Denmark decided to freeze the

construction of LTC facility beds in exchange for integrated care options in the home

and community. This policy allowed increasing numbers of individuals to age at home

(Hollander, Miller, MacAdam, Chappell, & Pedlar, 2009).

When examining public policy decisions at the local level, a shift from facility based LTC

to H&CC is not always evident. As outlined at the beginning of this chapter, Ontario

witnessed a mass investment in LTC facility beds in the early 2000s, and simultaneous

cost containment in H&CC. Not until recently has the Ontario government developed

policies and funding to support aging at home initiatives (Ministry of Health and Long-

Term Care, 2007).

The key point is that public policy decisions to build LTC facility beds or to increase

capacity in the community have largely determined where individuals age (Clarkson et

al., 2005; Hollander et al., 2009).

Leading up to and following these reforms, a large body of literature emerged which

examined the extent to which older persons could age at home if given access to

resources in the community, and the relative costs compared to other care settings such

as hospitals or LTC facilities. This literature is explored in the sections that follow.


35

2.3 Demand side, Supply side, and the Balance of Care

The importance of considering both demand and supply side factors

A large body of literature has examined factors that lead to the utilization of health care

resources, including LTC facilities. Much of this literature has focused on the

characteristics and care needs of individuals (demand side). For instance, the following

characteristics have been noted as key risk factors for LTC facility placement:

• advanced age (Coughlin et al., 1990; Tomiak et al., 2000),

• living alone (Miller & Weissert, 2000),

• not married (Borrayo, Salmon, Polivka, & Dunlop, 2002)

• lower socio-economic status (Coward et al., 1996; Temkin-Greener & Meiners,

1995),

• lack of access to a family caregiver (Canadian Institute for Health Information,

2007),

• loneliness (Russell, Cutrona, de la Mora, & Wallace, 1997),

• impairment in activities of daily living (Foley et al., 1992; Gaugler, Duval,

Anderson, & Kane, 2007; Wolinsky, Callahan, Fitzgerald, & Johnson, 1993),

• impairment in instrumental activities of daily living (Andel, Hyer, & Slack, 2007;

Black, Rabins, & German, 1999; Gaugler, Leach, Clay, & Newcomer, 2004),

• cognitive impairment (Andel et al., 2007; Bharucha, Pandov, Shen, Dodge, &

Ganguli, 2004; Foley et al., 1992; Gaugler et al., 2007; Haupt & Kurz, 1993;

Wolinsky et al., 1993),

• Alzheimer disease or a related dementia (Andel et al., 2007; Bharucha et al.,

2004; Severson et al., 1994; Welch, Walsh, & Larson, 1992),


36

• aggressive behaviors (Haupt & Kurz, 1993), and

• incontinence (McCallum, Simons, & Simons, 2005).

Less attention has been placed on the role of the supply side (Miller & Weissert, 2003),

warranting further research (Coburn et al., 2003; Coward et al., 1996). Documented

trends of premature LTC facility placement suggest that the supply side (H&CC

capacity) may be a notable risk factor to placement. The literature suggests that

premature LTC placements (defined as placements among individuals who have care

needs that could be met in a community setting) range between 15% (Grando et al.,

2005; Spector, Reschovsky, & Cohen, 1996) and 30% (Bennett, Smith, Victor, &

Millard, 2000; Challis et al., 2000). Despite rhetoric on the growth of community-based

care options (e.g. housing with services and H&CC) and stricter eligibility criteria for

LTC facility placement, premature LTC placements continue to be noted. Likewise,

between 20-50% of individuals waiting for LTC facility placement in Ontario have care

needs that could potentially be met, safely and cost-effectively in the community

(Williams, Challis et al., 2009).

Research conducted by Spector et al (1996) outlines several supply side factors that

place individuals at risk of LTC facility placement including: lack of consensus among

providers on what constitutes the best environment for individuals; lack of awareness

among health care providers, individuals, and their families as to the range of options

available outside of LTC facilities; public policies that favor care in LTC facilities over

care in the home and community; and stringent reimbursement criteria for LTC facilities

creating an incentive to admit lower level clients.

Likewise, a qualitative study by Alcock et al (2002) outline factors at the organizational,

system, and provider levels to offer insight into why individuals who could potentially

age at home end up in facility based LTC. Focus groups were conducted with 89

community care coordinators in 5 Canadian provinces. The data demonstrated that in

addition to the characteristics and care needs of individuals, several supply side factors

influenced LTC placement risk. These factors included:


37

• Organizational factors- regulations, funding and eligibility criteria determined

what H&CC services were available. Many of the providers suggested that

greater flexibility through the pooling of resources and integration of services was

required.

• System factors- community-based infrastructure such as housing and

transportation, day programs, and the availability of facility based LTC beds

played a role in determining where individuals aged. For example, transportation

was particularly problematic in rural and remote areas and hindered access to

care. Communities with accessible housing allowed individuals to remain at

home longer.

• Informal provider factors- the strength of the client-caregiver relationship was

identified as an important factor. For example, in rural-remote and farming

communities there was a set belief that older people would be cared for at home;

however, out-migration of adult child caregivers has hindered opportunities to

age at home.

• Formal provider factors- shortages of personal support workers and nurses, the

main providers of home and community-based care was noted as a factor which

limited opportunities for individuals to age at home.

• Care management factors- heavy caseloads did not allow sufficient time and

energy to mobilize care options outside of LTC facilities; some of the community

care managers felt that hospital discharge planners initiated LTC facility

placement without considering H&CC options.

System level constraints were also highlighted in a survey conducted by Clarkson et al

(2005). In this study care managers from five Local Authorities in the UK were asked to

identify factors that limited opportunities for individuals to age at home. The results

revealed the following:


38

• home alternatives were constrained for individuals with dementia unless

specialized services were available;

• resource constraints and purchasing arrangements limited innovation of care

packages;

• the presence of a caregiver was crucial as the interpretation of need was

based largely on what the caregiver could handle; and

• system level constraints led to decision-making guided by available

resources, more than the needs of the client.

These examples demonstrate that the supply side plays a key role in determining where

individuals age. However, when system level constraints are minimized, such that care

managers are given greater flexibility in both how they deliver care and what resources

they provide, there is considerable opportunity to meet the needs of individuals while

sustaining health care system resources. This is demonstrated in a large body of

literature some of which has drawn on the Balance of Care framework.

Altering the supply side can shift the “Balance of Care”

The “Balance of Care” (BoC) is a framework first used by researchers in the United

Kingdom, commonly defined as the balance of resources invested in institutional care

versus care in the home and community (Challis, 1996) or as an end goal: “the attempt

to achieve the correct mix of provision of institutional and community based services in

any given geographical area” (Challis & Hughes, 2003, p. 201).

In its application, the BoC considers both demand (the needs of individuals) and supply

(the capacity of the health care system to meet these needs). Although policy makers

have little control over the demand side (aging of the population and the care needs of

this population), the literature suggests that the supply side can be altered to afford

better outcomes for both individuals and the health care system as a whole. More

specifically, a growing body of evidence including studies which have used the BoC


39

framework suggest that when care is appropriately targeted, case managed and

integrated (the provision of the necessary mix of health and social care), some

proportion of individuals who would otherwise be placed in a LTC facility could continue

to age in their own homes and communities, at similar or lower costs to the health care

system (Challis et al., 1990; Challis & Hughes, 2002, 2003; Tucker et al., 2008). Such

adjustments to the supply side can shift the “balance of care” from LTC facilities to

home and community.

Such a framework can be applied to multiple populations and age groups, however

much of the research summarized in this section has targeted vulnerable older persons

in LTC facilities or individuals at risk of being admitted to a LTC facility (Challis et al.,

1990; Challis & Hughes, 2002; Clarkson et al., 2005; Williams, Challis et al., 2009);

individuals with mental health impairments (Knapp, Chisholm, Astin, Lelliot, & Audini,

1997a; Tucker et al., 2008); and/or Alzheimer disease and related dementias (Challis et

al., 2002).

The body of BoC research suggests that successfully shifting the balance of care is

contingent on: 1) having a clear target population; 2) specifying a set of required

services; and 3) determining the cost alternatives (O'Shea & O'Reilly, 1999).

Accordingly, many Balance of Care studies have targeted individuals eligible for LTC

facility placement, to determine the extent to which their care needs could be safely met

in the home and community at similar or lower costs. One of the underlying

assumptions of these studies is that if community-based resources were available, a

proportion of individuals deemed eligible for LTC facility placement could remain in their

homes and communities (Audit Commission, 2000; Pickard, 2004).

Examples from the literature- United Kingdom

The earliest application of the Balance of Care took place in the 1970s in the United

Kingdom, through a series of care management demonstration projects (Challis et al.,

1990). These demonstrations, called the Thanet Community Care Project (Challis et al.,

1990), the Gateshead Health and Social Care Scheme (Challis et al., 1990), the


40

Lewisham Scheme (Challis & Hughes, 2002), and the Darlington Project (Hughes &

Challis, 2004), targeted individuals at risk of LTC facility placement or long stay hospital

utilization. The overall goal was to prevent premature admissions to these

institutionalized environments through the provision of case managed community-based

care packages (Challis et al., 1990).

In these demonstration projects the case managers were given small caseloads, and

flexible budgets with expenditure limits set at two-thirds the cost of LTC. The care

managers used this budget to design client-centered packages with the goal of safely

sustaining individuals in the community. The care managers provided ongoing

assessments; supported the community care providers (General Practitioners,

community nurses, and bath attendants), and a group of social care providers called

“helpers” who were employed specifically for these demonstration projects to provide

social care. The helpers provided companionship, assisted with meal preparation, and

medication management. Small day care groups were provided in the homes of some of

the helpers to provide congregate dining and social engagement opportunities for

housebound seniors. The allotted budget also allowed for amenities such as smoke

alarms, kettles, and vacuum packed meals to enhance the safety and flexibility of the

care packages (Challis et al., 1990).

Overall, the findings from these projects suggest that when appropriately targeted to

individuals at risk of LTC placement or hospitalization, active care management and a

flexible array of health and social care services can lead to psychosocial improvements

(improvements in well-being and reductions in caregiver stress); and better system level

outcomes (decreases in LTC facility placement or long-stay hospitalization, at similar or

lower costs to the health care system) (Challis et al., 1990; Challis & Hughes, 2003;

Phillips, 1996).

The BoC has also been applied as a policy-planning tool to determine the extent to

which a community-based package can be a safe and cost-effective alternative to

another setting.


41

Through a series of steps, individuals are grouped into categories based on levels of

need, care managers design care packages for typical individuals in each of the groups,

and the costs of each package are calculated and compared to the cost of care in an

alternative setting such as a LTC facility. From here, it is determined how many

individuals can (potentially) safely and cost-effectively remain in the community with a

care package as an alternative to placement in a LTC facility (Clarkson et al., 2005;

Tucker et al., 2008). This is the methodology adapted in this thesis; it will be described

in greater detail in the following chapter.

This methodology has two important caveats. First, the intent of the research is not to

remove individuals from the LTC facility or from LTC facilities. The “diversion” rate

(defined as individuals who can safely and cost-effectively age in the community with

the resources that they require) represents an estimate of where future investments

may be needed. Second, the model does not suggest that all older persons move from

LTC facilities to the home, it merely suggests that for a proportion of “at risk” seniors,

care can potentially be provided in a H&CC setting, meeting the preference of seniors if

they wish to “age in place” while potentially improving health care system efficiency.

Challis & Hughes (2003) summarized key findings of research that have focused on

shifting the Balance of Care for older persons. Their findings demonstrate the following:

• BoC initiatives help to reduce the number of older persons with lower needs in

LTC;

• cost savings can be realized upon appropriate placement into LTC facilities;

• the H&CC sector currently does not have the capacity to respond to increasing

and changing needs over the short term, thus inappropriate LTC and hospital

admissions occur;

• multidisciplinary assessment along with the use of a specialist allows more

people to age at home. Ongoing specialist care is important to monitor changing

dependencies and mental health of individuals; and


42

• a single entry point is important to ensure appropriate targeting while avoiding

duplication of service.

Two examples of Balance of Care studies from the UK include a study conducted by

Challis & Hughes (2002) that targeted frail older persons admitted to a LTC facility (n

=330). Using the methodological steps detailed above, the researchers found that 36%

of those categorized into case types could safely and cost-effectively be cared for in a

H&CC setting. Over half (60%) of the divertible clients were considered to have low care

needs (low levels of dependency and low levels of cognitive impairment), and had

access to a family caregiver in the home. Based on these characteristics, they were

deemed to be the least appropriately placed (Challis & Hughes, 2003). The second

example is a recent application that targeted mental health patients in Northwest

England. Just over one-fifth (21%) of individuals admitted to facility based LTC or acute

mental health inpatient beds could age safely and cost-effectively in their communities

when given access to community-based care (Tucker et al., 2008).

The Scottish Government recently established a program of research on shifting the

Balance of Care for older persons (see: http://www.shiftingthebalance.scot.nhs.uk/).

Findings from their systematic review of the literature illustrated that the focus of care

can be successfully shifted from short/acute/episodic to long-term through care

management, multidisciplinary teams, and an integrated mix of health and social care.

They also found that the location of care can shift from institutional to community-based

care through housing adaptations and equipment; supported discharge for individuals

recovering from a stroke, care at home, hospital at home programs, community hospital

(as opposed to district hospital), as well as day hospital programs (Johnston, Lardner, &

Jepson, 2008).

Examples from the literature- Ontario, Canada

The BoC has also been applied to 8 other regions across Ontario (Williams, Challis et

al., 2009; Williams, Kuluski et al., 2009; Williams, Lum et al., 2009). Among these

studies some common trends emerged:


http://www.shiftingthebalance.scot.nhs.uk/

43

• Significant proportions (generally between 20-50%) of individuals waiting for LTC

facility placement in these regions could potentially, safely and cost-effectively

age in their own homes and communities if given access to a community-based

care package.

• Most individuals required assistance with lighter care activities (instrumental

activities of daily living) including medications management, housekeeping, and

meal preparation, and less so with heavier care activities (activities of daily living)

such as toileting, eating, personal hygiene activities, and mobility.

• The presence of H&CC services is necessary but not sufficient; coordination and

integration of services is necessary to foster opportunities to age at home

particularly for individuals with multiple, complex needs.

Examples from the literature- United States

Although the Balance of Care research detailed in this section shows promising

evidence, a large body of North American evidence from the 1970s and 1980s

suggested that homecare was a more costly alternative (Health Care Financing

Administration & Office of the Assistant Secretary for Planning and Evaluation, 1987;

Weissert, Cready, & Pawelak, 1988). During this time period, the largest and most

rigorous attempt to formally establish whether home care could substitute for care in a

LTC facility was undertaken through the National Long-term Care Channeling

Demonstration based in the United States. The demonstration was designed to

establish whether alternative community-based models could be a cost-effective

alternative to regular homecare and/or substitute for care in a LTC facility.

The two models tested were regular case management (similar homecare structure with

a case manager acting as a system navigator and mobilizer of resources), and a

Financial Control model (similar to the care management schemes tested in the UK

detailed earlier). Care managers were given fixed budgets with expenditure limits (60%

of the nursing home budget) and were granted the flexibility to mobilize an appropriate


44

mix of health and social care for individuals on their caseloads. Both of these

approaches were evaluated through randomized control trials.

In both models (case management model and financial control model) primary informal

caregivers expressed satisfaction with the care arrangements and exhibited greater life

satisfaction; clients in both models demonstrated decreases in unmet needs, an

increase in confidence in receiving needed services, and modest increases in social

and psychological well-being. A modest reduction in LTC admissions was evident in

both models; however, differences were not statistically significant. There was no effect

on hospital utilization or mortality rates, and a substantial increase in the receipt of

formal community-based services (particularly in the Financial Control Model). Overall

the costs for the case management model were 8% greater than regular care; while the

cost for the financial control model was 16% higher than regular homecare (Health Care

Financing Administration & Office of the Assistant Secretary for Planning and

Evaluation, 1987).

Likewise, a literature review on the effects of H&CC as an alternative to either traditional

homecare models or institutionalization conducted by Weissert et al (1988) reached

similar conclusions. Findings confirmed that overall, client and caregiver satisfaction

increased, unmet need decreased, while utilization of homecare and overall costs

increased. The authors concluded that targeting patients at risk of LTC admission was a

problem for many of the studies; albeit an important prerequisite to achieve potential

cost savings (Weissert et al., 1988).

The role of targeting

The importance of targeting was revealed in a follow-up study to the LTC demonstration

projects. Using an optimization model characterized by tighter targeting, a 10%

decrease in LTC expenditures was estimated. In the original demonstration, providers

minimized professionally based services, and relied extensively on lower level services

for individuals. The follow-up study found that professional services, albeit more


45

expensive initially, are necessary to delay admission of higher needs groups into LTC

(Greene, Ondrich, & Laditka, 1998).

As documented in the introductory chapter of this thesis, it is important to provide

resources to correspond with levels of need. When enhanced homecare models, in the

LTC demonstration projects were applied to individuals who did not require this level of

care, such an intervention inevitably became an add-on cost to the health care system.

Direct substitutions between long-term care and homecare

Recent literature, including the BoC examples documented above, suggests that when

direct substitutions can be made between H&CC and LTC facility placement, better

individual and system level outcomes can be realized (Hollander & Chappell, 2007;

Pedlar & Walker, 2004; Stuart & Weinrich, 2001).

Such substitutions were revealed in a study conducted by Pedlar & Walker (2004).

These researchers tested the extent to which homecare could substitute for LTC

placement among Veterans waiting for placement. Veterans Affairs Canada (VAC)

provides a comprehensive menu of Federally funded services to Canadian War

Veterans, including over 4,000 priority access beds in LTC facilities, a homecare

benefits program (professional and personal support, dental and vision care,

prescription drugs, etc) and a Veteran’s Independence Program (VIP) to provide

assistance with lighter care such as grounds maintenance, housekeeping, meals on

wheels, etc. In the 1990s, a shortage of priority access beds prompted the Overseas

Service Veteran At Home Pilot study. This pilot study examined the extent to which

H&CC consisting of the necessary mix of health and social care could substitute for

care in a LTC facility.

The findings of this pilot study demonstrated that most veterans (90%) preferred and

chose to stay at home with support rather than be admitted to a LTC facility. The most

frequently used services were lighter, non-professional supports. The intervention was

also cost effective. The at-home option cost between $5000 and $6000 per client per

year as opposed to $45,000-$60,000 per client per year in a LTC facility. This study


46

demonstrated that when H&CC was available and the appropriate mix of health and

social care provided, the majority of individuals chose to age at home and care was

provided at lower system level costs.

Integrated care

In addition to the Balance of Care examples, and VIP model, many models of care that

integrate health and social care services for older persons have proven to be effective.

Integration is often described as a goal or mechanism to bridge the disparate health and

social care sectors. Much like the VIP model and Care Management Schemes, these

models generally consist of coordinated access to health and social care services to a

targeted group of individuals (e.g. frail older persons) and have demonstrated the

potential to achieve both cost savings and lower rates of LTC admissions (Johri et al.,

2003; MacAdam, 2008).

An international synthesis on integrated care models implemented in OECD countries

between 1996-2002, found that case management, comprehensive geriatric

assessment, use of a multidisciplinary team, a single entry point, and financial flexibility

led to cost savings through reductions in hospitalizations and/or LTC admissions (Johri

et al., 2003). In a recent synthesis of formally evaluated integrated care models for older

persons with chronic conditions; case management and access to a range of health and

social care resources was cost effective. When these components were combined with

the use of a multidisciplinary team, and the active involvement of a physician,

reductions in LTC facility utilization ensued (MacAdam, 2008).

These findings were reinforced in a scoping review conducted in 2008 on 47 models of

integrating health and social care services for older persons. Key elements of success

included: the targeting of resources to correspond with a diversity of needs, case

management, and multidisciplinary teams involving a primary care physician. The

authors concluded with “one-size does not fit all.” Key areas of consideration when

designing and sustaining integrated models of care included the infrastructure and


47

capacities of local contexts, the ongoing organizational and structural supports required,

and sufficient time to establish outcomes (Williams, Deber et al., 2009).

In summary, the evidence to date suggests that H&CC can potentially be a safe and

cost-effective alternative to LTC facility placement when the following components are

met:

• Appropriate targeting of individuals at risk of LTC admission or hospitalization

• Care management characterized by small case loads and financial flexibility

• The provision of an integrated mix of health and social care

• Access to a multidisciplinary team including a physician

• A single entry point to avoid duplication of service

• Consideration of local context, time and infrastructure to sustain programs

2.4 Chapter Summary

Much of the literature has considered the demand side (the needs of individuals) as the

sole or principle determinant of where individuals age. In this chapter, I also consider

the supply side (H&CC capacity) as a contributing factor. In doing so, I draw on two

theoretical frameworks: Neoinstitutional Theory and the Theory of Human Ecology.

Neoinstitutional Theory highlights the importance of the institutions and structures of the

State defined as public policies, norms, values, and other mechanisms that structure

behavior. Political Scientists have examined how institutions and structures shape

policy outcomes. An examination of the health care sectors in this chapter allowed for

an understanding of how the characteristics of these settings reflect a legacy of policy

decisions which have, to some extent, constrained opportunities for individuals to age at

home in Ontario. Further, by examining the theory of Human Ecology, the importance of

context in shaping opportunities to age at home was illuminated. The consideration of

the policy context is an identified gap in the Human Ecology literature and may serve to


48


explain some of the inconsistencies found when urban and rural LTC populations have

been compared in the literature. In some cases, rural populations were younger and

healthier than their urban counterparts, and were still at greater risk as a result of supply

side issues. Other studies found no such differences. This thesis affords more attention

to the supply side by considering the role of both local infrastructure and public policies

in shaping opportunities to age at home at the local level.

Also drawn upon in this chapter was an extensive body of literature that has elaborated

the Balance of Care framework. This framework suggests that targeted and integrated

H&CC can moderate demand for care in LTC facilities, providing a safe and cost-

effective alternative for some proportion of older persons.

As noted in this chapter, this thesis sits within the broader Balance of Care program of

research. The Balance of Care Framework originated in the UK and has been applied in

8 regions across the province of Ontario. Northwestern Ontario (the site for this thesis)

is the 9th region in Ontario in which this application takes place.

This thesis makes important contributions to the Balance of Care program research in

two key ways. First, it expands, theoretically, the role of the supply side. By drawing on

Neoinstitutional Theory and the Theory of Human Ecology, the role of public polices,

including how they are mediated across geographical landscapes is examined. Second,

this thesis focuses on urban-rural differences, not yet explored in previously conducted

Balance of Care studies. More specifically, this thesis outlines factors that structure LTC

facility wait-lists across urban and rural settings and determines the extent to which

H&CC can substitute for care in a LTC facility among individuals at risk of placement

across urban and rural communities.

49

Chapter 3 Methodology

The goal of this chapter is to detail the methodological steps used to 1) analyze and

compare the characteristics of individuals waiting for long-term care (LTC) facility

placement in urban and rural areas of Northwestern Ontario and 2) determine the extent

to which a community-based care package can safely and cost-effectively substitute for

care in a LTC facility for these individuals.

This chapter, divided into 10 sections provides information on the study context (3.1);

project planning (3.2); ethics approval (3.3); research design (3.4); the sample (3.5);

data sources, variables, and analysis (3.6); the Balance of Care Methodology steps

(3.7), the sensitivity analysis (3.8), provider insights (3.9); and a summary of the

Methodology (3.10).

3.1 Study Context

Urban and rural areas of Northwestern Ontario

The study was conducted in Northwestern Ontario (NWO), a region made up of over 32

towns and cities spread across almost half of Ontario’s landmass. This sparsely

populated region is home to 242,500 people, or 2% of Ontario’s population (Bains et al.,

2006).

NWO has one major urban centre, Thunder Bay with a population of over 100,000

individuals. The rest of the region is made up of cities and towns with populations of

less than 10,000 individuals with the exception of one city that has a population of over

15,000. In this thesis these communities are referred to as “the Region.” Besides

population differences, access to care varies greatly between Thunder Bay and the

Region. This is reflected in the Rurality Index of Ontario (RIO), developed by the Ontario

Medical Association, as a tool to aid policy development and funding of health care

services across the province (Kralj, 2000). The index measures distance to closest

basic and advanced referral centers; community population; population to General

Chapter 3: Methodology Kerry Kuluski

50

Practitioner (GP) ratio; number of active GPs/Family Practitioners in the community;

presence of a hospital; availability of ambulance service; social indicators such as

presence of an airport; post secondary institution(s); unemployment rate; weather

conditions; and specialized services including obstetrics and anesthesia. A higher RIO

score reflects greater rurality, and greater access issues. The RIO score in Thunder Bay

is 9.72, significantly lower than the RIO scores in the Region (mean = 65.47). Given

such different populations and RIO scores, the sample was divided into two groups

(Thunder Bay and Region).

The distinction between Thunder Bay and the Region made in this thesis most closely

resembles Statistics Canada’s definition of rural and small town defined as; “individuals

in towns or municipalities outside the commuting zone of larger urban centres (with

10,000 or more population) ” (du Plessis, Beshiri, Bollman, & Clemenson, 2001). In the

Region, one city, Kenora, has a slightly higher population (just over 15,000). Since the

population in Kenora is significantly lower than Thunder Bay and has a significantly

higher RIO score, it was classified as “the Region” for the purpose of this research.

3.2 Project Planning

The study took place between June 2007 and August 2008, including project planning,

data collection and analysis. The project planning phase occurred in three steps:

First, partnerships were established between the researcher, the North West

Community Care Access Centre (CCAC), one of fourteen organizations across Ontario

that organizes homecare and LTC placement for individuals who meet eligibility criteria,

and the North West Local Health Integration Network (LHIN), a regional entity

responsible for the planning and funding of health care services across Northwestern

Ontario. The North West CCAC agreed to support the project and provide the Resident

Assessment Instrument for Home-Care (RAI-HC) data for all individuals waiting for LTC

placement in northwestern Ontario.


51

Second, a cross sectoral steering committee was established to provide guidance and

insight in the planning, development, and interpretation of the methodological portion of

the thesis. With the help of senior staff at the North West LHIN and North West CCAC,

the Steering Committee for this thesis was recruited. Six steering committee meetings

were held throughout the duration of the project. The first meeting took place in

November 2007 and occurred at monthly or bi-monthly intervals thereafter until

December 2008, following data collection and analysis.

At the meetings, the committee discussed ways to keep the project grounded at the

local level. Among many contributions to the design of the project, the Steering

Committee encouraged the researcher to conduct a rural-urban comparison as opposed

to examining Northwestern Ontario as a whole. The Steering Committee emphasized

the importance of this distinction due to the significant impact that geography has on the

ability to provide health and social care services for older persons across Northwestern

Ontario. In addition, the Steering Committee took an active role in recruiting front line

care providers from across the health and social care continuum who had an

understanding of not only their sector, but of the broader continuum of care. These

individuals, referred to as the “expert panel” participated in simulation sessions, one of

the main data collection components of this thesis.

One of the most important roles of the Steering Committee was that of impacting policy

decisions at the local level. Following this project, the Steering Committee members,

particularly from the NW CCAC and NW LHIN, have used the results of this thesis to

guide decision making around resource allocation for vulnerable individuals across

Northwestern Ontario. (How the results of this thesis were used to guide policy and

practice is outlined in the discussion chapter of this thesis). For a list of sectors

represented by the Steering Committee and Expert Panels, refer to Appendix 3A.

Third, a visioning exercise took place in Northwestern Ontario, hosted by the North

West LHIN, where the Balance of Care method was introduced to an interdisciplinary

group of care providers, policy makers and community stakeholders, many of which

were members of the Steering Committee for this thesis. This symposium held in


52

November 2007 marked the official launch of the Northwestern Ontario Balance of Care

project. Ethics approval, retrieval of data, and analysis took place in the months that

followed and are detailed throughout this chapter.

3.3 Ethics Approval

Following the planning stages of this project, ethics clearance was received from the

University of Toronto Ethics Review Board on December 21, 2007. Refer to Appendix

3B to view a copy of the ethics approval letter.

3.4 Research Design

The study design was cross sectional and followed the methodological steps embedded

in the Balance of Care framework used previously in the United Kingdom (Clarkson et

al., 2005; Tucker et al., 2008) and more recently in Ontario (Williams, Challis et al.,

2009; Williams, Kuluski et al., 2009). It sits within a broader methodological framework

called a sequential mixed methodological design. In this type of methodology, one form

of data analysis (quantitative) forms the basis for the second (qualitative) (Creswell,

2003). In the interpretation phase of the study, both sources of data collection were

drawn upon.

As will be elaborated in this chapter, the quantitative phase consisted of the analysis of

assessment data derived from the Resident Assessment Instrument for Home Care

(RAI-HC). These data were used to construct case vignettes, the basis for the second

phase of the research. The vignettes were used in a simulation exercise with a panel of

care providers, referred to as expert panels. Vignettes have been referred to as a

methodology in and of itself and are used frequently in Social Science research to elicit

hypothetical scenarios meant to reflect real world decision-making situations (Denton et

al., 2008). As noted by Torres (2009) “vignette methodology entails the use of scenarios

that depict specific situations and the problems that might arise in them in order to

probe informants about the way in which they understand these scenarios and the

potential solutions that are available to the people depicted in them” (p. 94).


53

The vignettes were presented to the expert panels in a simulation exercise, where they

were asked to build community-based care packages for the individuals represented in

the vignettes if they felt that H&CC could be a safe alternative. Simulations are based

on the assertion that system level outcomes are a product of a series of formal and

informal negotiations amongst several stakeholders. To that end, a simulation exercise

requires representation from experts and stakeholders who represent the area of study.

The simulation environment allows “real world” conventions; policies and other

structural constraints to be challenged (Harvey & McMahon, 2008).

Detailed in this chapter are the steps undertaken to fulfill each of the above-mentioned

components of the research design.

3.5 Sample

The sample for this study was drawn from the LTC wait-list in Northwestern Ontario.

This list contained individuals who were assessed and deemed eligible for LTC

placement by a care manager at the North West Community Care Access Centre

(CCAC). As outlined in the previous chapter, an applicant for LTC facility admission

must meet a list of objective criteria before being placed on a wait-list. Refer to

Appendix 2B to view the eligibility criteria.

On March 16, 2008, the day the data were extracted, 892 individuals were eligible and

waiting for LTC facility placement. Twenty-eight of the individuals waiting did not have

an assessment completed and as a consequence were not included in the analysis. 864

individuals remained; over half (55%) resided in Thunder Bay; and 44% resided in the

Region. The remaining 1% had an unidentifiable postal code and was subsequently

excluded from the analysis. The final sample was composed of 858 individuals (475

from Thunder Bay and 383 from the Region) eligible and waiting for LTC placement.


54

3.6 Data Sources, Variables, and Analysis

Two types of data were used in this thesis: assessment data and cost data.

Data source #1- Assessment data

Data were analyzed from the Resident Assessment Instrument for Home-Care (RAI-

HC), an assessment tool launched in 2002 in the province of Ontario as a mechanism to

guide decisions around LTC admissions and community-based services for individuals

in need (Hirdes, Poss, & Curtin-Telegdi, 2008). In Ontario, CCAC case managers use

the RAI-HC to assess individuals for home care and/or LTC facility placement. Care

managers employed by the CCAC in NWO collected these data. The RAI-HC is a 9-

page assessment tool divided into 20 sections covering the following domains: name

and identification information; personal items; referral items; assessment information;

cognitive patterns; communication/hearing patterns; vision patterns; mood and behavior

patterns; social functioning; informal support services; physical functioning; continence;

disease diagnoses; health conditions and preventive health measures;

nutrition/hydration status; dental status; skin condition; environment assessment;

service utilization; and medications (Ministry of Health and Long-Term Care, 2003). To

view a full copy of the RAI-HC, refer to following link:

http://www.health.gov.on.ca/english/providers/program/ltc_redev/ccacltc/education/rai_h

c_interpreting_assessmentsv3.pdf.

Since many individuals receive multiple assessments, only the most up-to-date

assessment for each client on the wait-list was obtained from the North West CCAC.

The data analyzed represented assessment data for individuals waiting for LTC facility

placement at one point in time (March 18, 2008).

Prior to receipt of the data, they were stripped of all personal identifiers (name, health

card number, age and last 3 digits of postal code) to meet confidentiality requirements

stipulated by the University of Toronto Ethics Review Board. In addition to the RAI-HC

data, the Northwest CCAC provided an additional variable from their administrative


http://www.health.gov.on.ca/english/providers/program/ltc_redev/ccacltc/education/rai_hc_interpreting_assessmentsv3.pdf

http://www.health.gov.on.ca/english/providers/program/ltc_redev/ccacltc/education/rai_hc_interpreting_assessmentsv3.pdf

55

database which specified the setting in which the individual was waiting (community,

LTC facility waiting for bed of choice, hospital). In addition, a number of scales

measuring activity of daily living impairment, instrumental activity of daily living

impairment, and cognition, derived from the RAI-HC variables were provided to the

researcher. Detailed below are the main variables used for the analysis.

Data source #1- Assessment data- Variables

Dependent Variable To distinguish between individuals waiting in Thunder Bay and the Region I used the

variable entitled “Postal Code of Residence” (Section 4AA from the RAI-HC). Only the

first three digits of the postal code were provided to protect the confidentiality of the

individuals on the wait-list. Using the first three digits of the postal code enabled me to

divide the sample into urban and rural comparative groups (Thunder Bay versus the

Region).

Independent Variables Four independent variables were used in this analysis (activity of daily living impairment,

instrumental of activity of daily living impairment, cognition, and presence of a caregiver

in the home). These four variables were used for two reasons; first, these variables

have been shown to predict, or put an individual at risk of LTC facility placement (Andel

et al., 2007; Bharucha et al., 2004; Black et al., 1999; Foley et al., 1992; Freedman,

Berkman, Raap, & Ostfeld, 1994; Gaugler et al., 2007; Miller & Weissert, 2000; Tsuji,

Whalen, & Finucane, 1995); and second, these were the variables used in past Balance

of Care studies conducted in Ontario. Similar variables were used in the United

Kingdom, with the exception of instrumental activities of daily living. In the UK, the BoC

variables changed according to the population being studied; however, the variables

typically included a measurement of cognition; access to a caregiver; and functional

impairment (Clarkson et al., 2005).


56

Among the four variables used in the methodology for this study, the answer categories

were collapsed into fewer categories4 in preparation for the analysis, a step required to

create the BoC vignettes, which are detailed later on in this chapter.

1) Activity of Daily Living (ADL) Impairment- this variable was provided to the

researcher in the form of a scale called the Activity of Daily Living Hierarchy Scale.

This scale is used to measure an individual’s performance with personal hygiene

activities, toileting, locomotion in the home, and eating. Scores on this scale range

from 0 (independent) to 6 (total dependence) (Canadian Collaborating Centre-

interRAI, 2004). The original 6 scores were collapsed into 3 and renamed ADL

Difficulty:

ADL Hierarchy Scale ADL Difficulty 0 = Independent No Difficulty

1 = Supervision required Some

2 = Limited Impairment Difficulty

3 = Extensive Assistance Required (I)

4 = Extensive Assistance Required (II) Great

5 = Dependent Difficulty

6 = Total dependence

As demonstrated above, the answer category, no difficulty was equivalent to a score of

0 on the original scale; some difficulty was equivalent to a score of 1 or 2 on the original

scale (supervision/limited impairment), while great difficulty was equivalent to a score

between 3-6 on the original scale (extensive assistance/dependent/total dependence).

2) Instrumental Activity of Daily Living (IADL) Impairment – this variable was

provided to the researcher in the form of a scale called the IADL Difficulty Scale. This

scale is used to measure an individual’s difficulty with meal preparation, ordinary

housework, and phone use (Canadian Collaborating Centre- interRAI, 2004). This scale

4 The same cut points were used in previously conducted BoC studies in Ontario (Williams, Challis et al., 2009).


57

was originally modified by the Ontario BoC Research Group to include medication

management; a variable that was deemed essential among care managers in previously

conducted BoC studies (Williams, Challis et al., 2009). Since the scale is additive, it was

easily reconfigured. Scores range from 0 (no difficulty in any of the 4 IADLs) to 8 (great

difficulty in all 4 IADLs) Note: the original IADL Difficulty Scale had a maximum of 6, with

the addition of the variable medications management, the maximum score increased to

8. The 8 possible scores were collapsed into 3 and the variable was renamed IADL

Difficulty:

IADL Difficulty Scale IADL Difficulty 0 = No difficulty in any of the 4 IADLs No Difficulty

1 = Some difficulty with 1 IADL

2 = Some difficulty with 2 IADLs Some

3 = Some difficulty with 3 IADLs Difficulty

4 = Some difficulty in all 4 IADLs

5 = Great difficulty in at least 1 IADL

6 = Great difficulty in at least 2 IADLs Great

7 = Great difficulty in 3 IADLs; some Difficulty

difficulty with 1 IADL

8 = Great difficulty in all 4 IADLs

As demonstrated above, the answer category no difficulty was equivalent to a score of 0

on the original scale; some difficulty was equivalent to a score between 1-4 on the

original scale (some difficulty with 1 or more of the 4 IADLs); and great difficulty score

was equivalent to a score between 5-8 on the original scale (some level of difficulty with

all 4 IADLs; including great difficulty with at least one of the four).

3) Cognition- this variable was provided to the researcher in the form of a scale called

the Cognitive Performance Scale (CPS). This scale measures memory recall ability

(short-term memory); cognitive skills for daily decision-making; ability to make self-

understood; and eating self-performance. Scale scores range from 0 (intact) to 6 (very


58

severe impairment) (Canadian Collaborating Centre- interRAI, 2004). The 6 scale

scores were collapsed into 3 and renamed Cognition:

CPS Cognition 0 = Intact Intact

1 = Borderline intact

2 = Mild impairment

3 = Moderate impairment

4 = Moderate/severe impairment Not Intact

5 = Severe impairment

6 = Very severe impairment

As demonstrated above, the answer category, intact was equivalent to a score of 0 or 1

on the original scale (intact and borderline intact); and not intact was equivalent to a

score of 2-6 on the original scale (some degree of cognitive impairment).

4) Primary Caregiver Lives with Client? - This variable comes directly from the RAI-

HC (section G1eA) and measures whether or not the individual has a live-in informal

caregiver (family member, or friend who provides care to the individual). The answer

categories from this variable were collapsed into 2 from the original 3.

Primary Caregiver Lives with Client? Yes Yes

No

No such helper No

As demonstrated above, the third answer category from the original variable, no such

helper was placed into the no category5.

5 The answer categories no caregiver in the home and no such helper were combined because very few

individuals in NWO (much like the other Balance of Care studies conducted in Ontario) indicated having

no such helper. In NWO, less than 3% (1.3% and 2.3%) of the wait-list in both Thunder Bay and the


59

Other Variables of Interest

As noted in the literature review, in addition to the independent variables detailed

above, many other variables may increase an individual’s risk of facility based LTC. As

a result, I analyzed other known risk factors if available on the RAI-HC dataset. These

variables included: gender, marital status, bladder incontinence, bowel incontinence,

physically abusive behavioral symptoms, depression, and specific disease diagnoses

including Alzheimer’s disease and related dementias, psychiatric diagnoses, and

depression. Although not a main focus of the analysis, a comparative analysis of these

variables was conducted to denote potential differences between the Thunder Bay and

Region wait-lists. Age was another variable of interest but was stripped from the dataset

to comply with ethical requirements stipulated by the University of Toronto Ethics

Review Board. Other variables measuring social isolation and proxies to socio-

economic status (education and lack of funds to purchase care) were other documented

risk factors on the RAI-HC but significant amounts of missing data precluded their

presence in the analysis.

Data source #1- Assessment data- Analysis

Data were analyzed using SPSS version 11.5 using a series cross tabulations, chi

square and t-tests. Using these data analysis techniques allowed me to document

statistically significant differences between the Thunder Bay and Region samples on the

four BoC variables (ADL Difficulty, IADL Difficulty, Cognition, and Presence of a

Caregiver in the Home) as well as the other variables of interest detailed above.

In addition to the RAI-HC data, I also drew on cost data.

Region respectively identified having no such helper. To ensure that individuals who had no such helper

did not present with significantly different health needs than those who had a caregiver outside the home;

independent samples t-tests were run for both the Thunder Bay and Region samples which indicated that

no significant differences were evident in ADLs; IADLs; and cognition.


60

Data source #2- Cost data

Costs for community support services, CCAC contracted services, and LTC facility

services were obtained.

The costs of community support services were obtained from the Ministry of Health and

Long-term Care (MOHLTC), Health Data Branch who provided Ontario Health

Reporting System (OHRS) Data for Local Health Integration Network (LHIN) and

Ministry Funded Programs for Northwestern Ontario for the third quarter of fiscal year

2007-2008, the most up-to-date reporting period available at the time of this research.

The community support services included: Adult Day Service (a supervised day

program offering meals, social activities and transportation for individuals with cognitive

impairment, frail seniors, or both); meals on wheels; congregate dining/wheels to meals;

transportation; home maintenance and repair; security checks/reassurance; caregiver

support- counseling; caregiver support- training and education; caregiver support- paid

staff; caregiver support- volunteer; and emergency response system (installed into

home).

Multiple agencies provided these services across Northwestern Ontario. In order to

make urban-rural comparisons, CSS were divided into two groups (those provided in

Thunder Bay and those provided in the Region). Since multiple agencies reported for

each service (e.g. Thunder Bay had multiple providers for day programs), the average

weighted6 unit cost for each service in Thunder Bay and the Region was calculated). To

view how the costs were weighted and calculated for each CSS, refer to Appendix 3C.

The CCAC costs, provided directly by the North West CCAC, consisted of average unit

costs for homecare-contracted services. They provided average unit costs for nursing,

personal support, occupational therapy, physiotherapy, speech pathology and social

6 A community service agency that provides services to 100 clients was assigned more weight than a

community service agency that provides services to 5 clients. This was done to provide system level

costs that best reflected actual utilization patterns.


61

work for fiscal year 2007-2008. The costs provided were an average for the entire

Northwestern Ontario region including travel costs. Table 3.6a provides the weighted

average unit cost for each community support service and unit costs for CCAC

contracted service for both Thunder Bay and the Region.


62

Table 3.6a Comparative Unit Costs of Community Support Services for Thunder Bay and the Region

*2004-2005 cost data

Community Support Services7 Unit 2007/2008 MOHLTC Figures for North

West

Thunder Bay Region

Adult Day Centre- Alzheimer’s Full Day $113.00 $62.48

Adult Day Centre- Frail Seniors Full Day $113.84 $56.00

Adult Day Centre- Integrated Full Day $113.00 $65.45

Meals on Wheels Meal $11.00 $10.38

Congregate Dining Attendance $9.86 $11.98

Transportation 1-Way Trip $19.37 $13.62

Home Maintenance 1 Job n/a $44.52

Friendly Visiting Visit $23.03 $14.75

Security Checks/Reassurance 1 Contact *$6.74 $1.00

Caregiver Support- Counseling Hour $46.30 *$41.03

Caregiver Support- Training and Education Hour $47.00 *$22.86

Caregiver Support- Paid Staff Hour $33.00 N/A

Caregiver Support- Volunteer Hour $22.58 $22.00

Emergency Response System Installation $213.62 $213.62

7 These costs do not include agencies that exclusively serve Aboriginal clients. Given the low number of

Aboriginal people on the wait-list (less than 5%); Aboriginal community support services were excluded

from the analysis and are not included in the average weighted unit costs presented above. The project

Steering Committee suggested that a separate study, with greater Aboriginal care recipient and care

provider representation would be a more effective way of discerning culturally appropriate care options for

this population.


63

With the exception of congregate dining, the weighted average cost/unit of service for

community support services was generally higher in Thunder Bay when compared to

the weighted average cost/unit of service for community support services in the

Region.8 Determining the factors that influenced the difference in costs go beyond the

scope of this research; however, the differences may be attributable to the structure of

the agencies that deliver such programs. For example, formalized services (typical in

urban environments such as Thunder Bay) may be more expensive than volunteer

driven, grassroots programs that are more typical of rural and remote areas. However,

the data do not allow for definitive conclusions.

Not all community supports were available in both Thunder Bay and the Region, thus a

cost could not be calculated for all services. At the time of the research, home

maintenance (as a formal service) was not available in Thunder Bay, while caregiver

support (paid staff) was not available in the Region. In these particular cases, the 2004-

2005 data source was used, as this was the most up-to-date alternative.

Table 3.6b Comparative Unit Costs of CCAC Services for Northwestern Ontario

(NWO)

CCAC Services Unit Cost/Unit of Service for North West CCAC 2007/2008

CCAC Nursing Hour $54.71

CCAC Physiotherapy Visit $95.57

CCAC Occupational Therapy Visit $109.29

CCAC Social Work Visit $184.44

CCAC Personal Support/Homemaking

Hour $25.17

The CCAC costs, provided by the North West CCAC, represent the average cost for the

entire region, thus one uniform cost was used for each of the CCAC services for both

Thunder Bay and the Region. 8 Even when the costs were assigned equal weights, the costs remained higher in Thunder Bay.


64

The cost for LTC facility placement was publicly available online through the MOHLTC

website and is outlined in Table 3.6c

Table 3.6c Long Term Care Home Per Diems (July 1, 2008) based on Basic Level of Accommodation

Funding Envelope Per Diem (per day) effective July 1, 2008

Nursing & Personal Care (based on CMI of 100) $76.07

Programming & Support Services $7.35

Raw Food $7.15

Other Accommodation $46.74

Total Cost $137.31

Sources: Ministry of Health and Long-term Care, 2002; Ontario Association of Non-

Profit Homes and Services for Seniors, 2008

The Ministry of Health and Long-term Care covers the majority of the cost ($85.43 per

day), while the client pays $51.88 per day for basic accommodation. A reduced rate is

available for clients unable to pay, determined on a case-by-case basis. Clients residing

in semi private and private rooms pay a higher client fee, $59.88 and $69.88 per day

respectively.

With these data (RAI-HC and cost data) in hand, a series of methodological steps from

the Balance of Care framework were followed. These steps are detailed below.


65

3.7 Balance of Care Methodology Steps

Step #1: Create a working sample

All individuals on the wait-list were placed into relatively homogenous groups based on

their scores on the variables outlined in the previous section. Individuals were divided

into one of thirty-six possible stratifications. For example, the first stratification called

“Appleton” (a fictional name) consisted of individuals who had no ADL difficulty, had no

IADL difficulty, were cognitively intact, and had a caregiver in the home. This was the

lowest needs group. At the other end of the continuum, the highest needs stratification

called “J Johns” had great ADL difficulty, great IADL difficulty, were not cognitively intact

and had no caregiver in the home. To compare the two samples, the percentage of the

Thunder Bay wait-list and the percentage of the Region wait-list that stratified into each

group were highlighted. Consistent with previous BoC studies (Williams, Challis et al.,

2009; Williams, Kuluski et al., 2009) stratifications containing more than 2.5% of the

wait-list in either Thunder Bay or the Region were selected for further analysis. As

indicated in the next chapter (results), 16 stratifications were populated in Thunder Bay,

the Region, or both, within the range of past Balance of Care studies (Challis, 2006;

Williams, Challis et al., 2009). Each of the populated stratifications was turned into a

case vignette detailed in step #2.

Step #2: Construct vignettes

For stratifications that met the required threshold, a case vignette was written to detail

the characteristics of typical individuals within. I was able to select out specific details

for each of the stratifications from the RAI-HC dataset. These details were provided in

each of the vignettes and relate to each of the BoC variables (cognition, ADL difficulty,

IADL difficulty, and caregiver characteristics). The specific components of the BoC

variables provided on the case vignette were:

Cognition- short-term memory recall; decision-making ability; expression; and eating

self-performance.

ADL Difficulty- locomotion in the home; eating; toileting; personal hygiene; and bathing


66

IADL Difficulty- medication(s) management; housekeeping; phone use; meal

preparation; and transportation.

Caregiver characteristics- caregiver’s relationship to client; (adult child, spouse, etc);

type of care provided. Table 3.6d provides an example of one of the case vignettes

named “Davis.”

Table 3.6d Example Case Vignette

Davis- Case Vignette

“Davis is cognitively intact and functionally independent in all ADLs with the exception of

bathing (limited assistance is required). Davis has no difficulty using the phone; some

difficulty with transportation, managing medications and preparing meals, great difficulty

housekeeping. Davis does not have a live-in caregiver. Davis’ caregiver is an adult child

who lives outside of the home. This caregiver provides advice/emotional support and

assistance with IADLs.”

1) Cognition- Intact (short-term memory recall is good; procedural memory is good

(can perform all or most tasks in a multi-task sequence); makes

consistent/reasonable/safe decisions; can express ideas without difficulty and

understand others; does not display any behavioral/verbal problems- e.g.

wandering)

2) ADL- No help required with most ADLs (locomotion inside the home, eating, toilet

use and personal hygiene), client requires limited assistance when bathing (still

highly involved in activity but requires some assistance/guided maneuvering).

3) IADL- No difficulty using the phone; some difficulty with transportation, managing

medications and preparing meals (needs some help, is very slow/fatigues); great

difficulty with housekeeping (little or no involvement in the activity is possible).

4) Caregiver (in home?)- No. Has an adult/child caregiver living outside of the home

who provides advice/emotional support and assistance with IADLs.


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Since each vignette represented multiple people, slight variances were evident on the

variable details. In order to provide conservative estimates of their needs the 75th

percentile (higher than average level of need) for each BoC variable was calculated;

consistent with the Ontario based Balance of Care studies (Williams, Challis et al.,

2009; Williams, Kuluski et al., 2009). How the 75th percentile was calculated is outlined

in Table 3.6e below.

Table 3.6e Determining the 75th Percentile

Answer Category N % Cumulative % (75th percentile)

No Difficulty 32 25.4 25.4

Some Difficulty 83 65.9 91.3

Great Difficulty 11 8.7 100.00

In the case of the Davis vignette, over one-quarter of the individuals had no difficulty

preparing meals; approximately 66% had some difficulty; and approximately 9% had

great difficulty. When examining the cumulative % column, the 75th percentile falls into

the “some difficulty” category. As such, the vignette was written to indicate the

individuals in this group, had “some difficulty” with meal preparation. This was done for

each of the variables in each of the populated stratifications to discern higher than

average levels of need, a conservative way of determining needs that represented

typical individuals in each vignette.

Step #3: Conduct simulation exercise with expert panel

With the help of the project Steering Committee, a group of care managers was

recruited to form the expert panels (one urban panel and one rural panel) for the

simulation exercise. The Steering Committee was asked to put forward names from

their respective sectors from both Thunder Bay and the Region of experienced front line

care managers. The Steering Committee selected seventeen individuals that, in their


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opinion, represented each of the sectors and geographical regions adequately to be

locally relevant. Once the list was approved by the Steering Committee, an invitation

was sent to each of the expert panel members. See Appendix 3D to view the expert

panel invitation. Seventeen care managers participated in total for a three-day

simulation exercise in June 2008.

During the first part of the day, the BoC method, and the objectives of the research were

explained in detail. The researcher explained that the purpose of the exercise was to

view the characteristics of individual’s wait-listed for facility-based LTC and examine the

extent to which a community-based package could potentially be a safe and cost-

effective option.

The Balance of Care simulation exercise, in which the expert panels participated, was

defined as a policy planning exercise, and tool, to assist with future service planning for

an aging population. The care packages were created to provide insight into the types

of services that would be needed to help vulnerable individuals age at home.

Following the introductory presentation, the panel members were divided into urban and

rural expert panel working groups (e.g. providers from Thunder Bay made up the urban

expert panel and providers from the Region made up the rural expert panel).

They were asked to review each of the sixteen vignettes (the same vignettes were

provided to both the Thunder Bay expert panel and the Region expert panel), draw on

their knowledge of the health and social care continuum, and create care packages that

they judged to be appropriate and safe for the individuals to stay at home. This

simulation provided a forum for the care managers to work as a group, share ideas, and

educate one another about their respective agencies. The simulation provided them the

opportunity to combine resources from across the continuum into care packages. They

were given the following guidelines:

- Design a care package if they felt that the individuals represented in the case vignette could safely be supported in their home.


69

- Draw on services available in their communities so that the components of the care packages could be appropriately calculated using regional cost figures. This was an easier process for the Thunder Bay expert panel as they

were all from one community. The process was more challenging for the Region

expert panel as they represented various rural and remote communities across

NWO. Thus, the services that were placed into the care packages were available

in some communities and not others. This was less a limitation than it seems, as

the construction of the care package was a hypothetical exercise to get a sense

of what types of services could potentially help older persons age at home, and

perhaps, delay LTC placement. Thus, the community services that were lacking

in some areas were identified to provide an evidence base for service and policy

planners of the types of community services that were needed. The Thunder Bay

and Region care managers worked in separate groups when creating the

packages and then compared notes and engaged in discussion at the end of

each of the three working days.

- Ask for clarification when needed. In addition to the information provided in the

case vignettes, I had access to the RAI-HC dataset during the simulation

exercises and was able to provide additional information upon request.

Information such as mental health (e.g. psychiatric diagnoses; depression);

behaviors indicative of late stage dementia (e.g. wandering; physically and

verbally abusive behavior) are some examples of additional information that was

provided during the simulation exercise at the request of the expert panel

members.

Once the packages were created, they were given back to me to calculate the costs.

Step #4: Calculate care package costs

Using the cost data detailed earlier in this chapter, the costs of each of the care

packages was calculated. The urban costs were used for the Thunder Bay care

packages while the rural costs were used for the Region care packages.


70

User fees for community services and LTC facility costs were excluded to increase

comparability, and to stay within the objectives of this research9.

The costs outlined in Tables 3.6a and 3.6b (on the previous pages) were used to

calculate the cost of each care package over a thirteen-week period (a typical planning

and reporting period). The costs of the packages were compared to the cost of a LTC

facility bed over an equivalent time period. As such, the daily long-term care rate

($85.43) was multiplied by 91 days (13 weeks) for a cost of $7774.13 over a thirteen-

week period.

Step #5: Estimate diversion rates

After costs for CCAC and community support services were calculated for each care

package, and compared to the cost of a LTC facility bed over an equivalent time period

(13 weeks), I estimated how many groups (and individuals in total) could potentially

safely and cost effectively remain at home with a community-based package as a

substitute for LTC facility placement.

Three outcomes were possible: 1) the care package was deemed safe and cost-

effective; 2) the care package was safe but not cost-effective; and 3) it was unsafe to

remain in the community (no package created). Comparisons were made between the

Thunder Bay and Region care packages, in addition to the characteristics of the

individuals who met the diversion criteria (were assigned a care package that was safe

and cost-effective); characteristics of individuals for which a package was safe but not

cost-effective; and characteristics of individuals for which a care package was unsafe.

9 First, in a LTC facility, the user fees for care cover the cost of food and accommodation. Cost of food

and accommodation for individuals in the community varies greatly, and was not available to the

researcher. Second, the goal of this research was to guide future policy planning and government

investments for an aging population; thus, using costs to government was both comparable and deemed

appropriate given the objectives of this research.


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3.8 Sensitivity Analysis

Given such diversity of services, costs of services, and panel members across urban

and rural settings, a sensitivity analysis was conducted in the final phase of the

methodology.

In doing so the Thunder Bay care package components and costs (which contained

higher unit costs) were applied to the Region sample to establish the degree to which

the results were robust to the most conservative specifications.

3.9 Provider Insights

Following the sensitivity analysis I impart a list of key insights provided by the care

managers during the simulation exercise. As the care managers constructed the care

packages they engaged in ongoing dialogue about their experiences providing care in

their respective regions and agencies. These “key insights” were collected by the

researcher over the course of the 3 days and then presented to both panels on the last

day to ensure that the themes accurately reflected their views. The care managers, after

making a few clarifications, agreed that these were insights that represented their

experience as care managers in Northwestern Ontario. As such, the data presented in

this section do not represent a formal systematic qualitative analysis, rather some key

examples which help to contextualize the other findings.

3.10 Summary of Methodology

In summary I adapted the Balance of Care (BoC) framework developed in the UK to

examine how demand side factors (individual characteristics and needs) and supply

side factors (accessibility of H&CC at the local level) structure LTC wait-lists in urban

and rural areas of Northwestern Ontario.


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In the first stage of the analysis I utilized assessment data to compare key

characteristics (including functional and cognitive impairment and access to an informal

caregiver in the home) of individuals waiting for LTC in urban and rural areas. In the

second stage I conducted a simulation exercise in which experienced front line care

managers were asked to construct community care packages required to maintain wait-

listed individuals safely in the community. In the third stage, costing data were used to

compare the costs of community-based care packages to the costs of care in a LTC

facility, and to estimate the proportions of wait-listed individuals that could be safely and

cost-effectively “diverted” to community. Cost-effectiveness was defined as a

community-based care package cost being equal to or less than the cost of a LTC

facility bed, while safety was based on the opinions of the participating care managers.

The findings were supplemented by key insights shared by the expert panels during the

simulation exercise.

73

Chapter 4 Results

In this chapter, I answer the main research question, “What factors determine whether

or not older persons age at home?” I hypothesize that in addition to demand side factors

(individual characteristics and needs) the supply side (home and community care

capacity at the local level) also determines whether or not older persons can age safely

and cost-effectively at home.

I broke the broad research question and hypothesis into testable research questions

and associated hypotheses:

“What are the characteristics of individuals waiting for LTC facility placement in Thunder

Bay (urban) compared to the Region (rural areas) of Northwestern Ontario?”

H1: “Individuals waiting for long-term care facility placement in the Region will have

lower levels of need compared to individuals waiting for long-term care facility

placement in Thunder Bay.”

H2: “Individuals waiting for long-term care facility placement in the Region will be

less likely to be living with an informal caregiver (unpaid family member or friend

providing care) compared to their Thunder Bay counterparts.”

“What proportion of individuals waiting for long-term care facility placement in Thunder

Bay (urban) compared to the Region (rural communities) can safely and cost-effectively

age at home if given access to a community-based care package?”

H3: “Some proportion of older persons waiting for long-term care in Thunder Bay

could potentially age safely and cost-effectively at home if community-based care

were available; in the Region, this proportion will be higher since access to home

and community care is even more limited.”

The first research question and corresponding hypotheses are answered in section 4.1.

The characteristics of the individuals waiting for LTC are outlined, including

geographical place waiting (Thunder Bay versus Region); the setting in which the two

Chapter 4: Results Kerry Kuluski

74

samples were waiting (community, hospital, LTC facility waiting for bed/facility of

choice); the distributions of the four BoC variables (cognition, ADL difficulty, IADL

difficulty, and access to an informal caregiver in the home); and the stratifications based

on these variables.

The second research question and corresponding hypotheses are answered in section

4.2 which outlines the comparative diversion rates, care package trends, and cost

comparisons.

Section 4.3 outlines the sensitivity analysis, a summary of provider insights is provided

in section 4.4, followed by a summary of results in section 4.5.

4.1 Characteristics of Sample

Figure 4.1 provides a visual depiction of Northwestern Ontario including a breakdown of

the communities in which individuals were waiting for LTC facility placement.

Figure 4.1a Location Waiting across Northwestern Ontario

Northwestern Ontario Long-term Care Wait-list

N = 864 (2.7% of people 65+ in NWO)

Thunder Bay (Urban NWO) = 475 (55% of wait-list) Region (Rural NWO) = 383 (45% of wait-list) P0T (Nipigon, Schreiber, Terrace Bay, Geraldton, Marathon, etc) = 67 P8T (Sioux Lookout) = 28 P9N (Kenora) = 40 P0W (Rainy River) = 55 P9A (Fort Frances) = 54 P0V (Red Lake) = 29 P8N (Dryden) = 100 P0X (Keewatin, Sioux Narrows, Nester Falls, Minaki) = 9 P8C (Unidentified Region) = 1 No Postal Code Recorded = 6


75

Most individuals were waiting in Thunder Bay while the remaining was dispersed among

various rural and remote communities (the Region). Within these communities

individuals were waiting in one of three settings (community, hospital, or LTC facility

waiting for their bed of choice). These comparisons are noted in Table 4.1a.

Table 4.1a Place Waiting by Geographic Region

Variable Thunder Bay n = 475

Region n = 383

Place Waiting

Community

Hospital

LTC Facility waiting for bed/facility of choice

34%

37%

29%

76%

18%

7%

Over one-third (37%) of wait-listed individuals in Thunder Bay were waiting in a hospital;

another third (34%) were in a community-based setting, while the remaining 29% were

in a LTC facility waiting for their bed of choice. The picture was very different in the

Region where more than three quarters (76%) of the wait-listed individuals were waiting

in a community-based setting; 18% in a hospital; and 7% in a LTC facility waiting for

their bed of choice. Thus, individuals waiting in Thunder Bay were utilizing more

expensive resources while waiting (hospital and LTC facility) compared to individuals in

the Region (mostly waiting in a community based setting--home, retirement home or

supportive housing).

Four balance of care variables

The following section outlines the comparative analysis of characteristics of individuals

waiting for LTC facility placement in Thunder Bay versus the Region. They were

compared on four BoC variables (cognition, activity of daily living impairment,

instrumental activity of daily living impairment, and presence of a caregiver in the

home). These comparisons are presented in Table 4.1b as well as Figures 4.1b-e.


76

As outlined in Table 4.1b below, individuals wait-listed in Thunder Bay had significantly

greater cognitive impairment, ADL impairment, and IADL impairment, than their

counterparts from the Region. Differences were statistically significant. Minor

differences were found when comparing the extent to which a primary caregiver was

present in the home, but the differences did not afford statistical or practical

significance.

Table 4.1b Characteristics of Wait-listed Individuals by Geographic Region in

Northwestern Ontario

*denotes a statistically significant difference at the 0.001 level

Variable

Thunder Bay

n = 475

Region n = 383

*Cognition

Intact

Not Intact

33% 67%

50% 50%

*Activity of Daily Living Impairment

No Difficulty

Some Difficulty Great Difficulty

28% 37% 35%

65% 18% 17%

*Instrumental Activity of Daily Living Impairment

No Difficulty


1% 21% 79%

2% 50% 48%

Presence of a Caregiver in the Home?

Yes No

37% 63%

35% 65%

The Figures below provide a visual depiction of the BoC variable comparisons as well

as the results of the statistical tests.


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Figure 4.1b Cognition

As outlined in Figure 4.1b, individuals waiting for LTC in Thunder Bay were more likely

to be cognitively impaired (67%) compared to their Regional counterparts (50%),

confirming my hypothesis. The chi square test showed a statistically significant

difference: X2 = 26.287, p < 0.01

Figure 4.1c Activities of Daily Living

As outlined in Figure 4.1c, individuals who were wait-listed in Thunder Bay were more

likely to be impaired in activities of daily living compared to their Regional counterparts,

confirming my hypothesis. The t-test demonstrated a statistically significant difference

between the Thunder Bay sample (M = 2.07, SD = .793) and the Region sample (M =

1.53, SD = .775); t (856) = 10.129, p < 0.01.


78

Figure 4.1d Instrumental Activities of Daily Living

As outlined in Figure 4.1d, individuals wait-listed in Thunder Bay were more likely to be

impaired in instrumental activities of daily living than their Regional counterparts,

confirming my hypothesis. The t-test demonstrated a statically significant difference

between the Thunder Bay sample (M = 2.79, SD = .421) and the Region sample (M =

2.46, SD = .534); t (856) = 9.983, p < 0.01.

Figure 4.1e Presence of a Caregiver in the Home

As outlined in Figure 4.1e, no differences were demonstrated between the Thunder Bay

and Region samples, confirmed through a chi-square test (X2 = .299, p = .585). Two

thirds of individuals in both geographic areas did not have a live-in informal caregiver.

Contrary to my hypothesis, access to an informal caregiver in the home did not vary by

region (two thirds of both samples had no live-in informal caregiver).

The implications of these findings will be discussed in the next chapter.


79

Given that a proportion of these individuals were already in a LTC facility waiting for

their bed of choice, the four variables were analyzed again, excluding the LTC facility

population. Upon adjusting the sample, the distribution of variables between the

Thunder Bay and Region samples did not change; in fact the overall percentages did

not shift by more than a few percentage points. To view the distribution without the LTC

facility population, refer to Appendix 4A.

In addition to the four BoC variables, many other factors (noted in the previous chapter)

may place individuals at risk of LTC facility placement including; gender (findings are

mixed- some studies suggest women are at greater risk, while other studies suggest

that men are at greater risk); lack of a live-in spouse caregiver; marital status (those

who are not married are at greater risk); bladder incontinence; bowel incontinence;

physically abusive behavioral symptoms; isolation; depression; Alzheimer’s disease;

other types of dementias; and psychiatric diagnoses. To demonstrate that no other

factors were influencing the outcomes of our comparative analysis, Thunder Bay and

Region samples were compared on these characteristics. The comparison is outlined in

Table 4.1c.


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Table 4.1c Comparison of Other Key Risk Factors to Facility-Based Long-Term

Care

Variable

Thunder

Bay n = 475

Region n = 383

Personal Items

Gender Female

Male

64% 36%

67% 33%

Marital Status

Married Not Married (including widowed,

divorced, single, etc)

30% 70%

33% 67%

Caregiver Characteristics

Relationship to Primary

Informal Caregiver Spouse

Adult Child Other

23% 54% 23%

24% 56% 20%

Mood and Behavior Patterns

Physically Abusive Behavior

Yes No

1% 99%

1% 99%

Disease Diagnoses *Alzheimer’s Disease Yes No

Other Dementia Yes No

*Psychiatric Diagnoses Yes No

*Mean Depression Score (0-13) higher score = greater

depression

25% 75%

22% 78%

18% 82%

1.77

9%

91%

21% 79%

12% 88%

1.02

Continence *Bladder Incontinence Yes No

*Bowel Incontinence Yes No

36% 66%

65% 35%

59% 41%

85% 15%


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To view the comparative statistical analysis between the two samples on these

variables, refer to Appendix 4B.

In summary, no differences were found on gender (mostly female); marital status

(approximately one-third were married); the extent to which the live-in caregiver was a

spouse (approximately one-fifth); and physically abusive behavioral symptoms (less

than 1% exhibited these behaviors in both samples). However, individuals in Thunder

Bay were more likely to be experiencing some level of bladder and bowel incontinence,

were more likely to be depressed (albeit depression scores were low overall); be

identified as having Alzheimer disease; or have a psychiatric diagnoses, compared to

their rural counterparts. Age was also a variable of interest, but it was excluded from the

dataset to comply with ethics requirements. Thus, when considering these additional

risk factors of LTC facility placement, individuals in Thunder Bay continue to

demonstrate greater levels of decline.

Stratifications

Using the four main Balance of Care variables outlined earlier, individuals were

classified into one of 36 possible stratifications. In Table 4.1d presented on the next

page, these stratifications are presented in four columns. Column one displays the

name of the stratification (given a fictional name for organizational purposes); followed

by four columns outlining each of the variables and possible scores, followed by the

percentage and frequency of wait-listed individuals from Thunder Bay and the Region

respectively. The stratifications that were populated (containing 2.5% or more of the

wait-lists in Thunder Bay, the Region, or both) were turned into case vignettes in

preparation for the simulation exercise with the expert panels. Some of the

stratifications met the 2.5% threshold for just the Region sample (Copper, Upperton),

while some of the stratifications met the 2.5% threshold for just the Thunder Bay sample

(Jones, Kringle, Quinn). These stratifications were all included to allow for direct

comparisons between the Thunder Bay and Region samples. The samples that met the

2.5% threshold captured 92% of the Region wait-list and 93% of the Thunder Bay wait-

list. This is within the range of previously conducted BoC studies in both the UK and


82


Ontario (Challis, 2006; Williams, Challis et al., 2009). The adjusted samples were 441

(out of 475) in Thunder Bay and 351 (out of 383) in the Region. To view the chart with

the adjusted sample, please refer to Appendix 4C.

The following three pages outline the 36 stratifications. The highlighted stratifications

were turned into case vignettes.

83

Table 4.1d Stratifications Chart

Stratification Confusion ADL Difficulty IADL Difficulty Live with Caregiver?

% Thunder Bay = 475

% Region

n = 383

#1 Appleton Intact No No Yes 0 0

#2 Bruni Intact No No No 0.2% 2%

#3 Copper Intact No Some Yes 1% 6%

#4 Davis Intact No Some No 7% 25%

#5 Eggerton Intact No Great Yes 1% 2%

#6 Fanshaw Intact No Great No 4% 5%

#7 Grimsby Intact Some No Yes 0 0

#8 Hamilton Intact Some No No 0 0

#9 Islington Intact Some Some Yes 1% 1%

#10 Jones Intact Some Some No 3% 1%

#11 Kringle Intact Some Great Yes 3% 1%


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% Thunder Bay = 475

% Region

n = 383 #12 Lambert

Intact Some Great No 5% 3%

#13 Moore Intact Great No Yes 0 0

#14 Nickerson Intact Great No No 0 0

#15 Opus Intact Great Some Yes 0.4% 1%

#16 Pringle Intact Great Some No 1% 1%

#17 Quinn Intact Great Great Yes 3% 1%

#18 Rogers Intact Great Great No 5% 2%

#19 Smith Not Intact No No Yes 0 0

#20 Thompson Not Intact No No No 0.2% 0.3%

#21 Upperton Not Intact No Some Yes 2% 5%

#22 Vega Not Intact No Some No 3% 9%

#23 Wong Not Intact No Great Yes 3% 5%


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% Thunder Bay = 475

% Region

n = 383 #24 Xavier

Not Intact No Great No 7% 8%

#25 Yeung Not Intact Some No Yes 0 0

#26 Zeleny Not Intact Some No No 0 0

#27 A. Armour Not Intact Some Some Yes 1% 1%

#28 B. Biloski Not Intact Some Some No 2% 1%

#29 C. Cameron Not Intact Some Great Yes 8% 6%

#30 D. Daniels Not Intact Some Great No 14% 5%

#31 E. Edwards Not Intact Great No Yes 0 0

#32 F. Fish Not Intact Great No No 0 0

#33 G. Gallo Not Intact Great Some Yes 0.2% 0

#34 H. Hogan Not Intact Great Some No 0 0

#35 I. Innis Not Intact Great Great Yes 14% 7%

#36 J. Johns Not Intact Great Great No 12% 6%

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As outlined on the previous pages, the highlighted stratifications represent those that

contained at least 2.5% of the sample or more in Thunder Bay, the Region or both. The

populated stratifications, with some minor variation, match the stratifications of other

Balance of Care samples across Ontario (Williams, Challis et al., 2009). More

specifically, all stratifications match that of other Ontario Balance of Care studies with

the exception of the stratification called “Eggerton” (not populated here); and the

stratification called “Jones” (populated here but not in other studies).

As expected and based on the analysis of variables outlined above, individuals in the

Region were disproportionately represented in the low needs stratifications, while

individuals in Thunder Bay were disproportionately represented in the high needs

stratifications. For example, the first six stratifications (containing individuals with

relatively low levels of needs) contained 13% of the Thunder Bay wait-list compared to

40% of the Region wait-list. Conversely, the last six stratifications (containing individuals

with relatively high levels of need) contained 26% of the Thunder Bay wait-list and 13%

of the Region wait-list. A summary of the low needs stratifications (groups 1-6) and high

needs stratifications (groups 31-36) are provided in the table below. The “low needs”

stratifications capture individuals who have no ADL impairment, no cognitive

impairment, but IADL impairment. The “high needs” stratifications capture individuals

who have ADL impairment, cognitive impairment, and IADL impairment.

Table 4.1e Summary of Stratifications

Thunder Bay n = 475

Region n = 383

Low Needs

(Stratifications 1-6)

13.2% 40.0%

High Needs

(Stratifications 31-36)

26.2% 13.0%


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As outlined in the Methodology Chapter (Chapter 3), each of the populated

stratifications (detailed in Table 4.1d) were turned into case vignettes and presented to

the care managers (expert panelists). The care managers were divided into Thunder

Bay and Region working groups to coincide with their location of practice. They were

presented with the same 16 vignettes, to allow for direct comparisons of the care

packages upon completion. After the care packages were created, the costs of the care

packages were calculated using the weighted average unit costs for community support

services provided in the Region (for the Region care packages), and then using the

Thunder Bay community support service costs for the Thunder Bay packages. Once the

cost of each package was calculated, they were compared to the cost of a LTC facility

bed over an equivalent time period (13 weeks), a typical, planning and reporting period.

From here the potential diversion rate was estimated (the proportion of individuals for

which a community-based care package would be both safe and cost-effective) for both

Thunder Bay and the Region. To review all packages and associated costs, please refer to Appendix 4D.

4.2 Diversion Rate (the proportion of individuals for which a

community-based care package was both safe and cost-

effective)

Overall, just over one-quarter of individuals (26%) wait-listed in Northwestern Ontario

could be “diverted”; a result that is within the range of past Balance of Care studies

conducted in the UK and Ontario (Challis & Hughes, 2003; Challis et al., 2000; Clarkson

et al., 2005; Tucker et al., 2008). Differences were found when comparing Thunder Bay

and Region diversion rates.

In Thunder Bay, two care packages (for Copper and Davis) were safe and cost-effective

alternatives to LTC facility placement, compared to five care packages (for Copper,

Davis, Fanshaw, Upperton and Wong) in the Region.


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The diversion rate in the Region was 50%, compared to 8% in Thunder Bay. In other

words, half of the individuals waiting for placement in the Region could potentially,

safely and cost-effectively remain at home with a community care package compared to

8% in Thunder Bay.

These results should be interpreted with caution. Such diversion rates would only be

possible if appropriate H&CC were both available and could be integrated into care

packages. For instance, given that the Region has limited H&CC, the extent to which

half of the wait-list could be diverted to the community is questionable. The high

numbers of “low needs” individuals who were wait-listed and the subsequently high

diversion rate is more a reflection of a fragmented system. In the absence of

community-based care, facility based LTC may become the default option, particularly

in resource poor areas. The implications of these findings will be discussed in the next

chapter.

It was considered safe but not cost-effective for 79% of the Thunder Bay sample

(Fanshaw, Jones, Kringle, Lambert, Quinn, Rogers, Upperton, Vega, Wong, Xavier,

C.Cameron, D.Daniels, and I.Innis vignettes) and safe but not cost-effective for 38% of

individuals waiting in the Region (Jones, Kringle, Lambert, Quinn, Vega, Xavier,

CCameron, and I.Innis vignettes). This means a care package was created but after

calculating the cost, it was higher than the cost of a LTC facility bed.

A community-based option was considered unsafe for 13% of individuals wait-listed in

Thunder Bay (J.Johns group), and for 12% of individuals wait-listed in the Region

(Rogers, D. Daniels, and J Johns). Table 4.2a outlines the safety and cost efficiency

thresholds for Thunder Bay compared to the Region.


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Table 4.2a Safety and Cost Efficiency Thresholds

Safe and cost effective

Safe but not cost effective

Not safe

Thunder Bay (n = 441) 8% 79% 13%

Region (n = 351) 50% 38% 12%

As noted above, the diversion rate among the Region sample was significantly higher

(50%) compared to the Thunder Bay diversion rate (8%).

In the following section, I break down the details of these results, by outlining key trends

among the characteristics of individuals in these three outcome categories (safe and

cost-effective; safe but not cost-effective; and unsafe), followed by a summary of key

trends from the care packages.

Characteristics of individuals in each of the above specified thresholds

Characteristics of Divertible Individuals (care package was safe and cost-effective) Urban (n = 35) Rural (n = 174)

Individuals who were divertible (50% of the Region sample and 8% of the Thunder Bay

sample) were independent in activities of daily living (ADL) with the exception of

bathing, where limited assistance, such as guided maneuvering, or supervision was

required. Care managers suggested that grab bars, bath seats and other types of

bathroom modifications would assist individuals with such limited impairments.

Subsidies for this type of equipment were strongly recommended, as individuals

typically have to pay for such equipment, or rent the equipment for limited time periods.


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All divertible individuals exhibited great difficulty with housekeeping, and some or great

difficulty with transportation, preparing meals, managing medications, and using the

phone. Overall, IADL support was the main requirement among this group.

In terms of place waiting, more than three quarters of these individuals in both Thunder

Bay and the Region were in a community-based setting; however, almost one quarter of

the Thunder Bay sample and 12% of the Region sample were waiting in an

institutionalized setting (hospital or LTC facility waiting for bed of choice). The

implications of heavy resource utilization by individuals with low levels of need will be

discussed in the next chapter.

Characteristics of individuals for which a care package was safe but not cost-effective Urban (n = 348) Rural (n = 134) This group consisted of many individuals from the Thunder Bay wait-list (79%) and a

smaller percentage of the Region wait-list (38%). This group showed greater signs of

decline compared to the divertible group detailed earlier. More specifically, some of

these individuals were cognitively intact while others were showing mild-moderate signs

of cognitive impairment. Individuals in this group had significant IADL impairments, and

were, at the very least, beginning to show decline in ADLs. Among these individuals, a

range of impairment was evident, but generally, some level of assistance was required

for eating, mobility, bathing, toileting, and personal hygiene activities, often requiring the

assistance of someone else to complete, or at least, “set-up” the task at hand.

It is for this group of individuals that the traditional homecare model consisting of

separate providers providing separate services started to falter. The packages, for these

individuals, inevitably started to get busier and, as stated by the care managers,

became “less manageable.” In addition, discussion around the benefits of integrating


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housing with services (e.g. supportive housing); care coordination across health and

social care sectors; and ongoing communication among providers, were identified as

ways to provide care that could be coordinated and seamless.

In terms of place waiting, just over one-third of the Thunder Bay sample was waiting in

the community, while the remaining 67% were in an institutional setting (hospital or LTC

facility waiting for bed of choice). The picture was very different among the Region

sample (almost three quarters were in the community, while the remaining quarter was

in an institutional setting (hospital or LTC facility waiting for bed of choice).

Characteristics of individuals where a community-based care was deemed unsafe Urban (n = 58) Rural (n = 43)

These individuals had such a high needs that a community-based care package was

considered to be unsafe by the participating care managers, thus no package was

created. Across both samples approximately the same percentage of wait-listed

individuals (12% and 13% in the Region and Thunder Bay respectively) met this

criterion.

These individuals had no caregiver in the home, were not cognitively intact and had

significant impairments in both ADLs and IADLs. One group in the Region consisted of

individuals who were intact, but had such high functional impairment, that the care

managers felt that there was no safe alternative to LTC facility placement. The decision

making of the individuals who were not cognitively intact was consistently poor or

unsafe requiring ongoing supervision. The functional impairments included supervision

or set-up help when eating, partial dependence on others to complete personal hygiene

activities, and in most cases, total dependence on others for mobility (locomotion in the

home), toileting and bathing. Great difficulty preparing meals, medications

management, transportation, housekeeping, and some or great difficulty with using the

phone was also evident.


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Although the perceived safety threshold appears to be the approximately the same for

both the Thunder Bay and Region samples, it is actually higher in the Region. While

JJohns was the only group considered to be “unsafe” in Thunder Bay (contained 13% of

the Thunder Bay wait-list), three groups were considered unsafe in the Region (Rogers,

D Daniels and JJohns), which collectively constituted 12% of the Region wait-list. In the

Region, great impairment in activities of daily living, instrumental activities of daily living,

and lack of an informal caregiver appeared to be characteristics of individuals on the

wait-list that served to be the tipping point into facility based LTC, while the tipping point

for the Thunder Bay care managers was not reached until these characteristics were

combined with cognitive impairment. The different tipping points may relate to lack of

services available in rural and remote communities as compared to urban areas.

In terms of place waiting, most individuals in both samples were waiting in an

institutional setting (hospital or LTC facility waiting for their bed of choice); however, a

considerable percentage (37%) of individuals wait-listed in the Region were waiting in

the community, concerning, given their high needs. In Thunder Bay the percentage was

much lower (12%).

In summary, individuals for which a care package was safe and cost-effective had

relatively low levels of needs and care packages that were subsequently less costly.

Individuals for whom a package was safe and not cost-effective tended to have greater

levels of need, requiring more services. It was suggested by the participating care

managers that housing with services such as supportive housing or an integrated

homecare model would be better suited for individuals in this group. The last group

consisted of individuals with very high levels of need and no access to a live-in informal

caregiver. In the latter case, the care managers felt that LTC facility placement was the

best and safest option.

In addition to trends among individuals, trends were also noted in the care packages

created. The following table outlines the services that were consistently drawn upon by


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both Thunder Bay and Region care managers. The highlighted services represent those

that were not consistently available across all communities in Northwestern Ontario but

considered important to foster opportunities to age at home.


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Table 4.2b Services Consistently Drawn Upon by Thunder Bay and Region Care

Managers

ADL Assistance IADL Assistance

Personal Support- Bath Assistance (for all); assistance with toileting, personal hygiene, mobility, and eating (when needs were greater)

Transportation services

Occupational Therapy (OT)- Home assessment, and home modifications such as installation of a grab bar, bath seat, or raised toilet seat

Meal programs (e.g. meals on wheels, congregate dining, meal preparation by a homemaker)

Physiotherapy (PT)- for activation and maintenance of physical functioning (recommended for individuals with ADL impairment)

Assistance with Housekeeping

Adult day programs (ADPs)- meal, social activity, and transportation included - care managers in the Region noted a shortage of ADPs, particularly for individuals without dementia Caregiver respite (if caregiver resided with client)- type of respite varied- in Thunder Bay (professional respite service); Region did not have professional community support respite service at the time of the study, tended to rely on volunteer program Installation of Emergency Response System Social visit/social work (e.g. friendly visitor, community support counseling- Region; CCAC Social Work- Thunder Bay) Medication assistance- (e.g. blister pack through local pharmacy; medication reminders via security checks and/or from a Personal Support Worker (PSW)


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Care package similarities

Certain services were used in all packages (outlined in Table 4.2b) such as a meal

service, transportation, bath assistance from a Personal Support Worker (PSW),

Occupational Therapy (OT) for safety checks and home modifications, the installation of

an emergency response system, and medication management. In order to minimize

adverse outcomes (e.g. delirium, falls, hospital or LTC admission), medication

management was strongly emphasized by care managers in both this study and other

Balance of Care studies conducted across Ontario.

Among individuals who were not cognitively intact and had a caregiver in the home,

LTC respite was often recommended, in addition to caregiver support through a support

group or a visiting volunteer. For individuals with functional impairments, Physiotherapy

(PT) services were also drawn upon.

Documented frequently throughout this study were key services not available in all

communities including: meal programs, transportation, caregiver respite (particularly

professional respite care), adult day programs, and medication management programs

(e.g. through a local pharmacy). Alternative housing options such as supportive housing

were also rare. The care managers demonstrated that these services represent key

gaps in the health care continuum in their areas.

Care package differences

Differences were also noted. Differences related to the types of services available. For

example, although caregiver respite was used in both Thunder Bay and the Region, the

type of program drawn upon varied. While the care managers from Thunder Bay

frequently drew upon a professional respite program, the care mangers from the Region

drew on volunteer run respite programs (volunteer visitor). Another example relates to

psychosocial support. While the care managers from Thunder Bay drew on contracted

CCAC social work services, the care managers from the Region tended to use

community support counseling. The care managers from Thunder Bay also included


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security checks reassurance (a daily phone call check for care recipients), while this

service was not used in the Region packages. Physiotherapy and Occupational Therapy

services were used in both care packages to varying degrees; however heavier reliance

was noted in the Region care packages.

In summary, despite some very minor differences in service choices, the overall

message from the expert panel sessions was that providing both health and social care

to this vulnerable population was integral in enabling them to age safely at home. This

important finding will be discussed in the next chapter.

Below is a summary table of all of the care package costs for both Thunder Bay and the

Region. The table includes the stratification, percentage of individuals wait-listed in

Thunder Bay and the Region who populate the stratification, scores on the 4 key BoC

variables (cognition, ADL difficulty, IADL difficulty, and presence of a caregiver), care

package cost comparisons and results. The care packages that were both safe and

cost-effective alternatives to LTC facility placement are highlighted.

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Table 4.2c Cost Comparisons for all Care Packages

Stratification % of people Cognition ADL Difficulty

IADL Difficulty

Presence of Informal

Caregiver Cost of Care Package

Care Package Safe and

Cost Effective?

Thunder

Bay n = 441

Region n = 351 Thunder

Bay Region

Copper 1% 7% Intact No Some Yes $5039.00 $2666.55 Yes- both Davis 7% 27% Intact No Some No $6561.95 $5634.63 Yes- both

Fanshaw 5% 5% Intact No Great No $8034.40 $6234.74 Yes- Region Jones 3% 1% Intact Some Some No $12646.08 $9610.11 No- both Kringle 3% 1% Intact Some Great Yes $15277.80 $10798.98 No- both

Lambert 5% 3% Intact Some Great No $9693.62 $9428.16 No- both Quinn 3% 1% Intact Great Great Yes $9333.00 $13144.63 No- both

Rogers 5% 2% Intact Great Great No $8516.04 N/A No- both Upperton 2% 5% Not Intact No Some Yes $15186.38 $6844.98 Yes- Region

Vega 4% 10% Not Intact No Some No $10957.95 $10243.95 No- both Wong 3% 6% Not Intact No Great Yes $13927.33 $7391.73 Yes- Region Xavier 7% 8% Not Intact No Great No $9598.26 $10232.90 No- both

C. Cameron 9% 6% Not Intact Some Great Yes $15929.08 $11262.82 No- both D. Daniels 15% 5% Not Intact Some Great No $12189.93 N/A No- both

I. Innis 15% 8% Not Intact Great Great Yes $27906.09 $12422.31 No- both J. Johns 13% 6% Not Intact Great Great No N/A N/A No- both

N/A = A care package was not created because the care managers felt that is was unsafe.


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For the first 5 categories (Copper, Davis, Fanshaw, Jones, Kringle), the costs of the

packages increased as the needs of the group increased for both Thunder Bay and

Region groups.

Some variations were found after this; the Thunder Bay care packages that contained

individuals with a live-in caregiver tended to be more expensive, particularly in the high

needs groups where caregiver respite programs (short stay respite in a LTC facility; in-

home respite; and caregiver support- training and education), added to the cost of the

packages. Region care packages among individuals with a caregiver did not see this

trend, perhaps because the caregiver community support programs that were utilized

were lower in cost (e.g. caregiver support-volunteer). The caregiver support- paid staff

(in-home respite program), which is more costly was not available in the Region at the

time of the study.

Overall the costs between the Thunder Bay and Region packages for each of the

stratifications varied, particularly for the Kringle, Quinn, Upperton, Wong, C. Cameron

and I. Innis packages. With the exception of Quinn (which was more expensive for the

Region sample), these packages were more expensive in Thunder Bay than in the

Region. In addition to community support services being of higher cost in Thunder Bay,

some of the care package choices also increased the cost. As mentioned above, the

professional caregiver respite program, added a significant cost to the Thunder Bay

packages. The adult day programs, also used frequently in the Thunder Bay packages

were much more expensive compared to these programs in the Region. In some cases

Social Work contracted through the CCAC was used in the Thunder Bay packages,

which was significantly more expensive than the community support services program

drawn upon by the expert panelists from the Region. In the case of Quinn, higher costs

for the Region package related to a greater reliance on CCAC PSW hours contrary to

Thunder Bay where fewer CCAC PSW hours were used. The inclusion of professionally

based respite services may be substituting for the extra PSW hours in this particular

case.


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4.3 Sensitivity Analysis

Given the variability in care package components (more units of service on average for

the Thunder Bay packages) and greater costs (higher costs for community support

services compared to the Region), a sensitivity analysis was conducted to determine

the extent to which the diversion rate would be affected if the Thunder Bay packages

and costs were applied to the Region sample. Only two care packages in Thunder Bay

were deemed safe and cost effective alternatives to LTC facility placement (packages

for Copper and Davis). To determine the Region diversion rate using the Thunder Bay

care package and costs I simply documented the percentage of individuals in the

Region who occupied these two groups. Contrary to 8% of individuals in Thunder Bay

who occupied these groups, 31% of individuals waiting in the Region occupied these

groups. When using Thunder Bay costs and Thunder Bay packages, the Region

diversion rate dropped from 50% to 31%, still significantly higher than the 8% diversion

rate for the Thunder Bay wait-list. Applying Thunder Bay packages and costs was the

most conservative route to conducting the sensitivity analysis, thus, the Region package

and costs were not applied to the Thunder Bay sample.

4.4 Provider Insights

The following sections outline key insights gleaned from the dialogue that occurred

among the Northwestern Ontario care managers (the expert panelists) during the 3-day

simulation exercise in June 2008. These insights, divided into three broad themes

(formal care; informal care; and policy), are detailed below.

Theme #1: Formal care

Availability and Scope of Services The care managers from Thunder Bay outlined that many great services existed in their

community, but long wait-lists precluded timely access to these services. In the Region,

the issue was related to both availability and scope; basic community support services


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did not exist in all communities including meal programs (e.g. meals on wheels, or

congregate dining); transportation services (municipal bus services and transportation

programs for the elderly), in-home caregiver respite programs; day programs

(particularly for non-dementia populations); and pharmaceutical medication

management assistance (e.g. blister pack set-ups). Greater availability of service

tended to be in Kenora-Rainy River District (western portion of the Region), as

compared to the North Shore (Eastern portion of the Region). The aforementioned

services were placed in most packages, resembling key components of the ideal mix of

services for individuals at risk of LTC facility admission. In other words, these services,

currently unavailable in some communities, were important to enable individuals to age

at home longer.

IADL support Both Thunder Bay and Region care managers emphasized the importance of

instrumental activities of daily living (IADLs) - transportation, meal assistance,

medication management, etc, in fostering opportunities to age at home. As noted

earlier, IADL services including meal and transportation programs were not consistently

available in all communities. The importance of medication management was also

emphasized. The care managers felt that medication management (listed as an IADL on

the RAI-HC) should be considered an activity of daily living given the detrimental effects

of improper medication management (falls and hospitalizations). Supportive housing Across NWO, particularly in the Region, housing with services (supportive housing) was

few and far between. The care managers described supportive housing as an integral

piece of the care continuum, not meant to replace LTC facilities, but rather a care

environment that ideally situated itself between homecare and LTC for some older

persons. The absence of this type of model, in their view, led to earlier admission to

LTC facilities. The care managers from the Region acknowledged that lack of

population density, particularly in the most rural and remote areas of the Region would

likely render such a model cost ineffective. Thus, congregate living, such as regular


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houses with a built in care team, was suggested as a more flexible and potentially cost-

effective way to provide housing with services.

Lack of awareness Care managers from both Thunder Bay and the Region felt that many individuals and

their caregivers were unaware of available services. Educating clients and caregivers

through the media, support groups and information sharing via videoconference were

suggested as potential tools to increase awareness.

In addition to being a resource to clients and caregivers, the utilization of

videoconferencing tools across the Region was identified as a mechanism for providers

to share best practices and provide support to one another. The Thunder Bay care

managers felt that communication among providers was essential and could be

facilitated through a “traveling binder” in the care recipient’s home, where multiple

providers could provide ongoing updates to other providers to keep client care

consistent, open, and safe.

Theme #2: Informal care

Two key points were noted. First, the presence of a caregiver in the home determined,

to a great extent, the ability of some older persons, particularly those with greater

needs, to age safely at home. The care managers noted that heavy outmigration trends

of young adults (potential caregivers) in this region of study might have limited the

extent to which older persons could age at home. Second, the care managers noted

that it was important to support both the care recipient and the informal caregiver.

However, the extent to which this occurred was limited by stringent eligibility criteria for

caregiver support services. For example, respite services (e.g. in a LTC facility,

professional respite care services, and additional CCAC respite care hours) were

unavailable if the caregiver and the care recipient lived in separate households.


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Theme #3: Policy

Across NWO, care managers commented on the overall “lack of flexibility” experienced

when serving older persons. As noted in the previous section, eligibility for caregiver

respite services was contingent on having a caregiver (e.g. family member) living in the

home with the care recipient. Another frequently used example was the eligibility criteria

for supportive housing, which excluded individuals with incomes above a specified

income threshold. Even among those eligible for supportive housing, long wait-lists

precluded access.

Overall, the care managers felt that access to services to support IADLs had worsened

since the onset of community-based reforms in Ontario in the 1990s and early 2000s

when the funding and availability of such services were constrained. The care

managers noted that it was difficult to mobilize services due to stricter eligibility criteria,

and lack of availability.

Given the focus on post-acute homecare, the care managers from Thunder Bay

described the health care system as reactive as opposed to preventive. Many

individuals were hospitalized upon reaching their “breaking point” and subsequently

proceeded to a LTC facility. These clients, largely unknown to the care providers

beforehand, represented individuals who “fell through the cracks of the system,” a

system they felt was designed to identify people when already quite frail.

The care managers from the Region indicated that LHIN Funded Services did not

always fit with “rural reality.” More specifically, the informal solutions established by rural

care mangers such as “going the extra mile” to fill in the gaps of the system were not

recognized on any formal grounds. The rural care managers indicated “programming

clients to provider needs” was a common result when dealing with the structural

limitations of the health care system. The care managers also felt that Northwestern

Ontario remained under funded, acknowledging the small population base, but high

demand for services and inadequate supply.


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To address this issue, the care managers felt that it was important to adequately

compensate and support front line workers as well as provide care managers with

caseloads that were more manageable.

Summary of key insights

The insights detailed in the sections above suggested that “shifting the balance of care”

is contingent on addressing the contextual and institutional factors of the health care

system. The contextual issues related to availability and scope of services, particularly

basic supports such as day programs, supportive housing, meal programs, medication

management, transportation, and caregiver respite, crucial to enabling individuals to

age safely in their homes and communities. In Thunder Bay long wait-lists for care and

strict eligibility criteria precluded access, while lack of services altogether posed

additional challenges in the Region.

The institutional factors related to the “rules” of the health care system, which at times

precluded the ability of care mangers to be client-centered and provide much needed

IADL support to sustain individuals in the home and community. Care managers

suggested that changes in policy were required to allow greater flexibility to adapt

funded services to reflect “rural reality” (e.g. congregate living as opposed to supportive

housing in sparsely populated areas), and to generally make services more accessible.

Other examples included the creation of support groups for care recipients and care

providers through virtual means, or keeping a “traveling binder” in the home of care

recipients to foster ongoing dialogue between care providers.

Although recognition of the necessity of policy change was noted, the examples

generally outline how care managers attempt to “work around” the challenges that they

face.


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4.5 Summary of Results

Demonstrated in this chapter was that individuals waiting for LTC facility placement in

Thunder Bay have significantly greater levels of need compared to their counterparts in

the Region. This does not mean that older persons in Thunder Bay have greater needs

as a whole. Observed is the impact of supply side factors; the different service mixes

across jurisdictions and how this predicts where individuals age. Limitations in the

availability of services in the Region appear to place individuals at risk of LTC facility

placement earlier than their Thunder Bay counterparts. If given access to a mixture of

health and social care services, a significant proportion of individuals waiting for LTC

facility placement in the Region (50%) could potentially age at home compared to 8% in

Thunder Bay. However, these diversion rates would only be achievable if services were

both present and accessible; currently not the case, particularly in the Region. Thus the

results represent what can potentially occur, given changes on the supply side.

Supplementing these findings were the insights provided by care managers (the expert

panelists who participated in the simulation exercise of this thesis) who pointed to the

limited scope and availability of services, and the structural limitations embedded within

their agencies and broader systems in which they worked. It is these factors that need

to be addressed if individuals are to age successfully in their homes in communities.

These barriers were particularly pronounced in the Region suggesting that LTC facility

placement may become the default option. The following chapter addresses the

implications of these results and areas that require further study.

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Chapter 5 Discussion and Conclusions

In this thesis I asked “What factors determine whether or not older persons age at

home?” I hypothesized that in addition to demand side factors (individual

characteristics and needs) the supply side (home and community care capacity at the

local level) also determines whether or not older persons can age safely and cost-

effectively at home.

In this chapter I begin by reviewing the thesis (5.1). I then go on to review the testable

hypotheses and findings (5.2); I outline the theoretical conclusions and implications

(5.3); policy conclusions and implications (5.4); data limitations (5.5); recommendations

for future research (5.6); and provide a post script describing the impact of this study in

Northwestern Ontario (5.7).

5.1 Thesis in Review

The central thesis question (see above) is important for two key reasons.

First, research indicates that many (if not the majority) of older persons desire to remain

in their own homes and communities for as long as possible (Department of Health,

2001; Knapp et al., 1997; Pedlar & Walker, 2004). They see aging at home as a means

of maintaining their independence, quality of life and well-being.

Second, community-based supports for aging at home are increasingly seen as a cost-

effective substitute for acute care in hospitals and long-term care (LTC) facilities, as well

as a means of preventing or delaying illness, maintaining functional capacity, and

moderating use of costly and sometimes inappropriate health care. In particular, a

growing body of evidence suggests that some proportion of older persons at risk of

facility based LTC can age successfully at home, at similar or lower system costs, if

given access to health and social care services in the community (Challis et al., 1990;

Williams, Challis et al., 2009).

Chapter 5: Discussion and Conclusions Kerry Kuluski

106

While the literature does not exclude the impact of supply side factors in determining

whether or not older persons can age at home, it has tended to focus on the impact of

individuals characteristics as well as demographic change, assuming that current

patterns of health care resource utilization will continue. For example, in attempting to

project the need for facility-based LTC beds, current bed rates are multiplied by growth

in number of older persons, without considering how demand for such beds might

change if community-based care alternatives were available. In Chapter 2, I outlined

several examples of public policies (including the case of Ontario) that have

systematically altered the “balance of care” in favour of LTC or H&CC, which impacted

where individuals aged. I argue, in this connection, that the supply side (H&CC

capacity) matters. By changing system level variables, in particular, by providing more

or less access to H&CC, the need for facility based LTC, and the likelihood of aging at

home will also vary.

Thus, the importance of the supply side has been acknowledged in the literature but

such analysis has been limited (Miller & Weissert, 2003), warranting further research

(Coburn et al., 2003; Coward et al., 1996). This thesis adds to the evidence base by

examining, in NWO, how supply side factors determine where individuals age.

While often addressed at an applied level, questions around aging at home also have

important conceptual and theoretical dimensions. In addition to assisting in interpreting

empirical findings, theory also tells us where to begin to look for explanations. As noted

in Chapter 2, I drew on two theories that emphasize the importance of broad system-

level factors in determining individual-level outcomes: Neoinstitutional Theory and the

Theory of Human Ecology. Neoinstitutional Theory derived from political science

suggests that the institutions of government (public policies, norms, values, and

organizational structures) matter; in addition to shaping the broad policy context,

institutional factors also shape what happens at the individual level, what services are

available at the local level, how they are accessed, and in the end, whether or not

people can remain at home. Similarly, Human Ecology Theory draws our attention to


107

geographical variations in built environments and local infrastructure that either result

from or mediate the impact of policy. In essence, local context also matters.

In Chapter 4, my findings confirmed that the institutions and structures of the state

matter and that they play a critical role in determining the extent to which individuals

receive care in their homes and communities. The different institutions of Medicare, LTC

and H&CC have led to considerable fragmentation of services for older persons. For

instance, policy decisions have left little opportunity for care mangers to coordinate

integrated H&CC packages (critical to allow individuals to age in their homes and

communities). My findings also confirmed that local context matters. In rural and remote

communities, where H&CC was particularly constrained, facility based LTC appears to

be the default option for older persons even at relatively low levels of need. This finding

was consistent with previous research (Bolin et al., 2006; Coward et al., 1996; Greene,

1984; Lin et al., 2004; MacKnight et al., 2003).

The sections that follow elaborate on these findings and provide directions for future

research.

5.2 Testable Hypotheses and Findings

As stated at the beginning of this Chapter I hypothesized the following:

“In addition to demand side factors (individual characteristics and needs) the supply

side (home and community care capacity at the local level) also determines whether or

not older persons can age safely and cost-effectively at home.”

I broke this hypothesis down into a three testable hypotheses, presented and discussed

below:

H1: “Individuals waiting for long-term care facility placement in the Region will have

lower levels of need compared to individuals waiting for long-term care facility

placement in Thunder Bay.”


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The results of the analysis provided evidence to support this hypothesis. Individuals

who were wait-listed in Thunder Bay were more likely to be impaired in cognition,

activities of daily living, and instrumental activities of daily living than their Regional

counterparts. Although significant differences were noted, a considerable number of

wait-listed individuals in both geographic areas demonstrated limited impairments

overall. These findings are detailed below.

Cognition In terms of cognition, 67% of individuals on the Thunder Bay wait-list were cognitively

impaired compared to 50% of the Region wait-list. Accordingly, more individuals waiting

in Thunder Bay were identified as having Alzheimer Disease or a related dementia

(47%), compared to the Region sample (30%). Important qualifications were noted: first,

33% and 50% of individuals on the Thunder Bay and Region wait-lists respectively,

were cognitively intact, quite high given that such impairment is seen to be a key risk

factor for LTC facility placement (Bharucha et al., 2004; Black et al., 1999; Gaugler et

al., 2007; McCallum et al., 2005; Wolinsky et al., 1993). Second, the degree of

impairment among individuals who were “not intact” was generally mild-moderate, with

fewer than 10% of cases falling into the “severe” category. These findings fell within the

range of past BoC studies conducted across Ontario where 50-70% of individuals had

some level of cognitive impairment with most cases falling into the mild-moderate range

(Williams, Kuluski et al., 2009; Williams, Lum et al., 2009; Williams & Watkins, 2009).

Thus, while there were geographic differences, many individuals on these wait-lists

were cognitively intact or had very minor cognitive impairments.

Activities of daily living (ADLs) In terms of ADLs, individuals wait-listed in Thunder Bay were significantly more

impaired in these activities compared to their Regional counterparts, consistent with

findings by Greene (1984) and Lin et al (2004) whose comparative studies of urban and

rural LTC populations also noted such differences. Although ADL impairment was

significantly greater among the Thunder Bay wait-list, many individuals in both

geographic areas (over one quarter in Thunder Bay and 65% in the Region) had no


109

impairment in these activities at all, with the exception of minor difficulties when bathing.

The percentage of wait-listed individuals who experienced ADL impairment was lower

than expected given that functional impairment has been identified as one of the main

criterions for LTC facility placement eligibility (Wolinsky et al., 1993). This finding was

consistent with other BoC studies conducted in Ontario where 30-50% of individuals on

wait-lists had no difficulty with ADLs (Williams, Kuluski et al., 2009; Williams, Lum et al.,

2009).

Instrumental activities of daily living (IADLs) In terms of IADLs, individuals wait-listed in Thunder Bay were significantly more

impaired in these activities than their Region counterparts; however, the difference

afforded very little practical significance since almost all wait-listed individuals in both of

these geographic areas (98%) experienced at least some degree of impairment in

IADLs (medication management, meal preparation, housekeeping, and phone use).

Widespread difficulty with IADLs among this population was consistent with findings

from previous Balance of care studies conducted across Ontario (Williams, Challis et

al., 2009; Williams, Lum et al., 2009). It appears that these activities, commonly referred

to as “lighter care” may predispose placement into LTC facilities across the province

(Williams, Challis et al., 2009). As will be noted later in this chapter, IADL support was

required by most, but services to support these impairments were less likely to be

available, especially in the Region.

H2: “Individuals waiting for long-term care facility placement in the Region are less likely

to be living with an informal caregiver (unpaid family member or friend providing care)

compared to their Thunder Bay counterparts.”

It turned out that access to an informal caregiver in the home did not vary by geographic

area. Two thirds of wait-listed individuals in both areas had no live-in informal caregiver.

This may reflect heavy out-migration trends of young adults or infrequent communal

living arrangements typical of North American households (Liebig, 2001). Out-migration

is a common trend in rural and remote communities (Alcock et al., 2002; Skinner &

Rosenberg, 2006), including the region of study (North West Local Health Integration


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Network, 2007). Out-migration trends in NWO had care managers operating on the

assumption that these caregivers (who tended to be adult children) were outside of the

community of the care recipient, providing, at most, intermittent care. As will be noted

later in this chapter, lack of informal care combined with lack of formal care may

magnify placement risk, particularly in the Region.

The extent to which older persons had access to a caregiver in the home in

Northwestern Ontario was similar to a Balance of Care study conducted in the Toronto

Central LHIN region where 35% of the wait-listed population had an informal caregiver

in the home (Williams, Challis et al., 2009), but much lower than the ethnically diverse

region of Central LHIN region where 55% of the wait-listed population had an informal

caregiver in the home (Central Local Health Integration Network, 2008). Trends of

communal living among ethnically diverse populations may explain aspects of this

difference (Liebig, 2001).

H3: “Some proportion of older persons waiting for long-term care in Thunder Bay could

potentially age safely and cost-effectively at home if community-based care were

available; in the Region, this proportion will be higher since access to home and

community care is even more limited.”

The data appear to support this hypothesis. I examined the extent to which older

person’s wait-listed for facility based LTC could potentially, safely and cost-effectively

age at home if given access to H&CC. Over one-quarter of individuals (26%) on the

wait-list in Northwestern Ontario met these criteria, a result that is within the range of

past Balance of Care studies conducted in the UK and Ontario (Challis & Hughes, 2003;

Challis et al., 2000; Clarkson et al., 2005; Tucker et al., 2008). When doing geographic

comparisons, half of the Region wait-list (50%) was considered divertible compared to

8% of individuals wait-listed in Thunder Bay.

To determine the consistency of findings under different assumptions I conducted a

sensitivity analysis by applying the Thunder Bay packages (which typically contained

more units of service than the Region packages) and Thunder Bay costs (which were

higher than the Region community support service costs) to the Region sample, which


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led to a Region diversion rate of 31% from 50%, still significantly higher than the

Thunder Bay diversion rate (8%). Thus, even when using the most conservative cost

specifications, there was considerable opportunity for wait-listed individuals to age at

home if given access to H&CC, particularly in rural and remote areas.

These results need to be interpreted with caution. While it may appear that half of the

individuals on the rural wait-list and a small proportion of individuals on the Thunder Bay

wait-list could be “diverted to the community,” this is based on the assumptions that

needed H&CC are both available and can be appropriately integrated into care

packages. Lack of resources (particularly in rural and remote areas) and lack of ability

to mobilize and coordinate resources when they do exist (in both Thunder Bay and the

Region) calls into question the extent to which these shifts could occur, particularly over

the short term.

The high proportion of low needs individuals wait-listed for facility-based LTC

(particularly in rural areas) and the subsequently high diversion rates reflects a failure at

the system level. In other words, when H&CC cannot be mobilized, facility based LTC

may become the default option. To that end, this thesis sheds light on factors at the

system level that structure LTC wait-lists. In doing so it provides insight on system level

constraints that have to be addressed to foster opportunities to age at home.

The care managers outlined some of these constraints over the course of the Balance

of Care simulation exercise. They suggested that the range of health and social

services, particularly in the Region, was limited. Even when services existed, the

capacity to combine the most appropriate mix of resources to meet the needs of aging

populations was constrained by agency rules and broader policies (e.g. eligibility and

funding policies). These insights were consistent with research conducted by Skinner &

Rosenberg (2006) and Cloutier-Fisher & Joseph (2000) which found that lack of access

to community services complicated by the introduction of managed competition was a

key issue in rural and remote communities. Likewise, the findings support research by

Alcock et al (2002), Spector et al (1996), and Clarkson et al (2005) who outlined the

importance of the supply side factors in facilitating or constraining opportunities to age

at home. These factors include access to an informal caregiver to provide care; the


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availability of community-based infrastructure; policy factors (agency rules which

determine how care packages are created); and the availability of LTC facility beds.

5.3 Theoretical Conclusions and Implications

I drew two broad conclusions from these findings. First, institutions matter. In addition

to the demand side (characteristics and needs of individuals), the supply side (the

structure and capacity of H&CC which are shaped by institutions of the state) played a

considerable role in determining whether an individual could age at home. Second, local context matters. In rural and remote communities where H&CC was less

accessible than in urban centers, opportunities to age at home were more constrained.

These two conclusions were in line with the assumptions of Neoinstitutional Theory and

the Theory of Human Ecology respectively.

Neoinstitutional Theory- Institutions matter

As noted in Chapter 2, Tuohy drew on historical institutionalism (a subfield of

Neoinstitutional Theory) to outline the institutions and structures of Medicare. I added to

this analysis by outlining the institutions and structures of sectors outside of Medicare

(LTC and H&CC). Two key points were emphasized. First, sectors outside of Medicare

(LTC facilities and H&CC) have different institutions and structures; there is a greater

role for market forces, and governments have engaged in relatively unconstrained

policy change. Since H&CC and LTC fall outside the protected entitlements of the

Canada Health Act, services and entitlements vary across jurisdictions, with

accessibility particularly strained in rural and remote communities. Second, constraints

in the Medicare sector have affected H&CC and LTC, impacting on the extent to which

individuals can access services in their own homes and communities. For example, in

Ontario, policy has focused on the reduction of hospital costs via early discharges and

reductions of Alternate Level Care (ALC) and Emergency Room (ER) utilization. This

has placed greater strain on an already overtaxed H&CC sector. In the H&CC sector,

greater focus on short-term post acute homecare has ensued leaving less room for the


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care of individuals with complex, ongoing long-term needs. Thus, by using Tuohy’s

framework as a guide, I demonstrated how institutions and structures of the state impact

on H&CC and ability to age at home.

Although this research focused on Neoinstitutionalism from a Political Science

perspective (e.g. using Tuohy as a guide), the findings also contribute to the

Organizational Behavioral literature. As noted in Chapter 2, Organizational Behavior

theorists have used Neoinstitutional Theory when studying organizational isomorphism

and diversity. The unit of analysis is the organizational field- “the aggregate of

institutions and affiliated stakeholders of a specific field (e.g. H&CC). The findings of my

research lend support to the importance of considering the micro or local/geographical

context as part of the “organizational field.”

Second, organizational theorists distinguish between institutionalization as a process or

an outcome (Tolbert & Zucker, 1996). While this thesis did not examine institutional

processes, it offered insight into the outcome of such processes. More specifically, the

considerable number of individuals with relatively low levels of needs being directed to

facility based LTC in Northwestern Ontario may have reflected a legacy of policy

decisions. The institutions of H&CC have been shaped by a series of policy decisions,

which in turn, have made it difficult for both providers and recipients to mobilize H&CC

services. These constraining forces were also identified through the insights provided by

the care mangers in this thesis.

Theory of Human Ecology- Local context matters

The Theory of Human Ecology asserts that local context matters and condition

individual level outcomes. Although this theory defines “context” broadly (at the micro

and macro level) it has mostly been considered in terms of micro built environments

(e.g. an individual’s home and immediate surroundings including social support

networks) and less so on urban-rural community level differences and policy (Wahl &

Weisman, 2003). The findings lend support to this theory by demonstrating clear

differences between urban and rural LTC wait-list populations, and different urban and


114

rural environments (e.g. H&CC infrastructure) which played a role in determining the

extent to which individual’s age at home or become at risk of facility based LTC. The

legacy of policy decisions outlined in Chapter 2 including the decision to build LTC

facility beds, and the introduction of managed competition appeared to have contributed

to greater fragmentation of services and few opportunities to age at home, particularly in

rural and remote communities. To that end, these findings demonstrated a linkage

between policy and the built environment by demonstrating how policy decisions

impacted on opportunities to age at home across urban and rural areas.

In addition to the two broad theoretical conclusions detailed here, there were three

specific conclusions drawn at the applied policy level.

5.4 Policy Conclusions and Implications

Instrumental activities of daily living (IADLs) are critical

The data suggested that the absence of community-based supports for instrumental

activities of daily living (IADLs) may drive demand for facility based LTC. Almost all wait-

listed individuals (98%) in both Thunder Bay and the Region had impairments in these

activities, mirroring trends among the rest of Ontario’s wait-list populations (Williams,

Kuluski et al., 2009). IADL supports include “lower” levels of care including assistance

with transportation, meals, medications, and housekeeping. A key point is that these

supports were required by a large majority of the wait-listed populations but were seen

to be the most difficult to access. Services to support IADLs were not available in

sufficient volume in Thunder Bay and were not available at all in some of the

communities in the Region.

As noted earlier in this chapter as well as in Chapter 2, a series of policy decisions in

Ontario fuelled by cost-containment measures in the Medicare sector, forced the H&CC

sector to deal with an increasing acute population. Budget freezes below the rate of

inflation in both CCACs and CSS organizations led to measures of cost containment

enforced through stricter eligibility standards for care. The type of care provided by


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CCACs focused more on professional and personal support, and less on homemaking

and assistance with instrumental activities of daily living. Similar trends are noted across

Canada where homecare is often described mostly as short term and acute focused

rather than long-term and chronic care focused (Hollander & Chappell, 2007).

The insights voiced by the care managers in this thesis suggested that difficulty

accessing IADL support became particularly difficult following LTC restructuring

activities in Ontario starting in 1995 with the introduction of managed competition and

complicated by the budget freeze in the early 2000s. This is consistent with research

conducted by Cloutier-Fisher & Joseph (2000) where providers and clients in rural and

remote Ontario indicated that the role of not-for-profit (NFP) and volunteer organizations

were minimized (many of which provided IADL support) following the introduction of

managed competition (Cloutier-Fisher & Joseph, 2000).

Lack of IADL support has critical implications for both individuals and the health care

system. A body of research suggests that such support plays an important role in

meeting the long term needs of aging populations while moderating demand for hospital

care and facility based LTC (Hollander, 2001, 2004; Hollander & Chappell, 2002;

Hollander, Chappell, Prince, & Shapiro, 2007; Hollander et al., 2009; Hollander &

Prince, 2002). The data in this thesis suggest that the absence of such necessary

support may place individuals at risk of facility based LTC.

Coordination/integration of services is required

The findings of this thesis suggest that the presence of services is not enough; the

ability to integrate and coordinate services is also critically important. It is clear in this

thesis as well as past BoC research that an integrated mix of health and social care

services (ADL and IADL care) is required to safely sustain individuals in their homes

and communities. Although care managers from Thunder Bay and the Region designed

separate care packages during the simulation exercise, both the Thunder Bay and

Region packages contained a mix of health and social care, consistent with other

Balance of Care studies conducted across Ontario (Williams, Challis et al., 2009). This

mix of services represented what was needed, by the opinion of care managers from


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multiple sectors across Northwestern Ontario, to safely sustain individuals in their own

homes and communities.

During the simulation exercise it became apparent that even when given the opportunity

to combine health and social care services into care packages, the service-by-service,

fragmented structure of homecare had limitations. If individuals had multiple needs and

required care from various services and sectors, the care packages became

unmanageable and expensive.

In line with this important limitation, care managers across Ontario have consistently

outlined that they do not always have the “right tools in their toolkit.” – the flexibility to

provide the right mix of services to individuals (Williams, Kuluski et al., 2009). Care

managers lack the capacity to combine and integrate both ADL and IADL supports into

care packages on a day-to-day basis. They outlined that constraints at the agency,

policy, and funding levels have precluded their ability to appropriately combine

resources across multiple agencies and organizations. The care managers

acknowledged that if resources were not available in the community, “upward

substitution” occurred- reliance on expensive resources such as hospitals and LTC

facilities in the absence of resources in the H&CC sector.

There is little capacity for care managers and providers to move beyond their “siloed”

sectors to provide integrated care packages. A key example used in this thesis is the

constrained roles of CCAC care managers (the main organizers of H&CC services in

Ontario). While community supports services (typical providers of IADL services within

the H&CC sector) can be recommended by CCAC care managers, formal organization

of such services into an integrated package historically goes beyond what CCAC

mandates and budgets allow. IADL services are typically provided by CSS agencies,

an array of mostly volunteer or charitable organizations, with variation in availability,

user fees, and eligibility criteria. Although Ontario plans to provide CCAC care

managers access to some CSS when designing care plans for their clients (Ontario

Association of Community Care Access Centres, 2009), the lack of CSS in rural and


117

remote communities may pose challenges for the implementation of this policy across

geographical settings.

The key point here is that in a fragmented H&CC sector, it is difficult to provide

coordinated and integrated community based care. As a consequence individuals may

end up in care settings that do not correspond to their level of need. For example,

individuals with relatively low levels of need may end up waiting for LTC along with

individuals whose needs are so high they could never be safely supported in the home.

These trends were noted in the data.

Lack of formal and informal care may together magnify the risk of long-term care facility

placement, particularly in rural and remote areas

System constraints including lack of services and the ability to coordinate services were

potentially magnified by the fact that the majority of wait-listed individuals in both

Thunder Bay and the Region did not have an informal caregiver in their homes. Lack of

informal support in the home is a notable risk factor to placement (Canadian Institute for

Health Information, 2007).

While it is often assumed that the informal care sector fills a gap left by the formal

sector, the results of this thesis call into question the extent to which this occurs. Lack of

both formal and informal support, particularly in rural and remote areas, suggests that

geography plays a critical role facilitating or constraining opportunities for older persons

to age at home. In other words, when combined with lack of needed formal support, the

only option may be LTC even among individuals who demonstrate relatively low levels

of need.

5.5 Data Limitations

There are other factors outlined in the literature and emphasized by the care managers

in this study that could have placed older persons at risk of facility based LTC. These

include cultural background, socioeconomic status, and location of the primary informal

caregiver.


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First, little data were available on cultural background. With the exception of language

spoken and need for an interpreter, the RAI-HC (source of data for this thesis) does not

provide information on the extent to which culturally appropriate services were required.

With the exception of individuals of Aboriginal origin,10 NWO is one of the least culturally

diverse regions of Ontario; however, such factors may have provided insight into

patterns of resource utilization among the samples in the study. The literature suggests

that willingness to accept services is affected by many factors, including the culture and

value system within which the person is embedded (Liebig, 2001).

Second, socioeconomic status (SES), another known risk factor for LTC facility

placement (Coward et al., 1996; Temkin-Greener & Meiners, 1995), is not measured on

the RAI-HC, with the exception of two variables, which can be used as proxies

(educational background and a question measuring whether the care recipient has

made any trade-offs because of limited funds11). These variables had significant

amounts of missing data (more than half of the responses were missing among the

Thunder Bay wait-list and over 20% among the Region wait-list), and were excluded

from the analysis. The literature suggests that overall, Canadians who live in rural and

remote areas tend to have lower socio-economic status (less than post-secondary

education, and lower income) than their urban counterparts (Canadian Institute for

Health Information, 2006). Since cost can be a barrier to accessing H&CC (Carstairs &

Keon, 2009) facility based LTC risk may have increased among individuals with lower

SES.

10 Northwestern Ontario has the highest proportion of individuals who identify as Aboriginal in the

province of Ontario. It appeared that very few individuals waiting for LTC (less than 5%) met this criterion,

perhaps because this population falls under Federal jurisdiction, and the communities represented on the

wait-list did not include many of the fly in remote regions of Northwestern Ontario which typically have

many individuals who identify as Aboriginal.

11 As noted on the RAI-HC trade-offs refer to limiting or excluding prescribed medication, home heat,

necessary physician care, adequate food, and /or homecare because of limited funds.


119

Third, there is limited information on the RAI-HC related to the primary informal

caregiver. For example, most wait-listed individuals (in both geographic areas) identified

having a primary informal caregiver, albeit only one-third of wait-listed individuals from

both geographical areas had access to a primary informal caregiver in the home.

Among persons on the wait-list who had caregivers outside of the home, there was no

indication as to whether or not these caregivers resided in the same community. This

information would be helpful to get a true sense of out-migration trends. In doing so, a

more accurate understanding of the impact on out-migration on access to care and risk

of facility based LTC can be noted.

5.6 Recommendations for Future Research

Document and analyze rural to urban migration patterns

In addition to determining the extent to which out-migration of informal caregivers

impact on risk of placement, future research can examine the extent to which care

recipients migrate from rural to urban areas to seek care. The extent to which older

persons in Northwestern Ontario migrate from the Region to Thunder Bay to seek

available care is unknown. Exodus from resource poor rural environments to urban

settings with greater infrastructure may explain why individuals in Thunder Bay present

with higher needs than their Regional counterparts. Individuals may move from the

Region to Thunder Bay to be closer to services, and/or family support in the event, or in

anticipation of declining health. Such migration patterns among rural populations have

been documented in the literature, but the associated implications on health and quality

of life outcomes are mixed (Reed, Cook, Sullivan, & Burridge, 2003) warranting future

research.

Examine alternatives to traditional homecare (service by service care provision in the

home)

The results of this thesis provide a diversion rate for a home-based care package using

a combination of separate services and separate providers. Although the care

managers were able to combine both health and social care services in the care


120

packages, the current line-by-line logic was used in order to calculate the costs of the

care packages. The findings demonstrated the limitations of this method, as it does not

allow for integration and/or substitution of both services and health human resources.

Future research could consider other models of community care such as supportive

housing (housing with services), cluster care (care provided to a group of individuals

who live in close proximity to one another by a coordinated team of providers) (Gray &

Bailey, 1995), or day programs (bringing people to a care setting), to determine the

extent to which they can provide additional opportunities for individuals to age at home

safely and cost-effectively.

For example, in Toronto-Central Region (another Balance of Care study site) supportive

housing was considered as an alternative to facility based LTC. In doing so, the

diversion rate rose from one-quarter up to approximately one half (Williams, Challis et

al., 2009). In supportive housing, where care and housing are effectively combined

there is greater opportunity to provide ongoing care on an “as needed” basis including

assistance with lighter care. Some supportive housing sites include congregate dining,

exercise and recreational activities on site. Thus, supportive housing represents a more

integrated approach to care in comparison to homecare. If supportive housing models

were considered in this thesis, perhaps more individuals could potentially age at home

longer. However, questioned by the care managers was the extent to which supportive

housing could be cost-effective in sparsely populated areas.

As a result, when considering other models of care, it is important to consider if and

how they can be adapted to suit rural areas. For instance, the Program for All Inclusive

Care for the Elderly (PACE) is an interdisciplinary capitated care model that is targeted

to older persons at risk of facility based LTC. The PACE model is currently being

adapted to suit rural and remote communities in the United States. The urban version of

the program consists of an Adult Day Centre where a range of health and social care

services are provided by a multidisciplinary team. Also included are transportation

services and additional homecare services as required. Taken into consideration is that

the day program model from which the urban PACE programs are built would likely not

work in rural areas due to long distances between individuals, lack of suitable buildings,


121

and a shortage of providers. The rural model will encompass more home based

supports, telecommunications between providers, engagement of the local community

(e.g. volunteers to provide transportation), and assistance from neighboring urban

communities (e.g. visiting providers) to make the program more economically feasible

(National PACE Association, 2002).

Therefore, when appropriate adaptations are made, there may be considerable

opportunity to integrate services for older persons across urban and rural areas. Future

research is required to test these models and determine the extent to which they can be

cost-effective alternatives to traditional homecare and LTC placement.

Conduct an in-depth analysis of community-based capacity in rural communities

When building up capacity in a local area it is important to build on existing informal

networks and strengths. Given the diversity within and amongst communities it is

important to consider the following: What works? What does not work? How can

services build on existing community strengths so that they are sustainable for aging

populations? This thesis did not provide sufficient data to answer these questions.

Future research using an in depth phenomenological or ethnographic approach would

help to capture community level nuances, specific approaches to care, strengths, and

challenges; information from which sustainable aging at home solutions can be built.

While this thesis suggests that local context matters, future research can go deeper to

investigate how communities build up capacity to meet the needs of their aging

populations. In doing so, the extent to which community based care can substitute for

institutional can truly be articulated.

Examine the social environment

This thesis focused on the Built Environment and Policy Environment and the

relationships between them. Very little consideration was given to the Social

Environment (family members, social networks, social capital, community participation,

inclusion, exclusion, etc). This thesis did note the presence or absence of a primary


122

informal caregiver among wait-listed individuals; however, a detailed analysis of the

social environment from which the wait-listed individuals resided was not included. Not

only did the data not provide sufficient information on the social environment, such

analysis extends beyond the scope of this particular thesis.

Research on older populations recognizes that social inclusion and exclusion are critical

factors that shape their experience. Social exclusion is defined as “the dynamic process

of being shut out, fully or partially, from any of the social, economic, political and cultural

systems which determine social integration of a person in society” (Walker & Walker,

1997, p 8). Social exclusion has historically been used synonymously with poverty or

exclusion from material resources. A growing body of research links exclusion to many

other factors. For instance, research conducted by Scharf & Bartlam (2008) examined

social exclusion of material resources, social relationships, community services, and the

community in general. Their data demonstrated that limited material resources, poor

social relationships, lack of access to services, and community level change impacted

on the quality of life of the rural populations under study. Future research could consider

the extent to which social exclusion impacts on access to H&CC and risk of facility

based LTC. Such analyses would lend further weight to the findings of this thesis by

providing greater insight into the myriad factors that shape the experiences of older

persons in rural and remote areas including their opportunities to age within their own

homes and communities.

5.7 Post Script: The Impact of this Study in Northwestern

Ontario

The North West Community Care Access Centre (NW CCAC) has already used the

analysis from this thesis to identify individuals who could be safely and cost-effectively

shifted from the LTC facility wait-list to the community. Since the analysis, the NW

CCAC has removed 100 individuals from the LTC wait-list (after asking permission of

the individuals waiting) to provide homecare consisting of health and social care

services. This was made possible through funding from Ontario’s Aging at Home


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Strategy, a $1.1 billion investment made by the Ontario government to sustain and

create services to help older persons age at home (Ministry of Health and Long-Term

Care, 2007). The inclusion of additional social support services was made possible

through a recent change in legislation, allowing CCACs to include social care in their

packages at greater service volumes than allowed previously. The CCACs will be

targeting individuals across the Region in an attempt to take additional individuals off of

the wait-list, allowing them to age at home with additional support if they choose this

option. Thus, the findings of this thesis has provided a framework for the North West

CCAC to target individuals, provide resources, and enable some proportion of older

persons to age in their homes and communities.

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and 1990s, London: Child Poverty Action Group. Weiner, K., Hughes, J., Challis, D., & Pederson, I. (2003). Integrating health and social

care at the micro level: Health care professionals as care managers for older people. Social Policy & Administration, 37(5), 498-515.

Weissert, W., Chernew, M., & Hirth, R. (2003). Titrating versus targeting home care

services to frail elderly clients: An application of agency theory and cost-benefit analysis to home care policy. Journal of Aging and Health, 15, 99-123.

138

Weissert, W., Cready, C., & Pawelak, J. (1988). The past and future of home and community-based long-term care. The Milbank Quarterly, 66(2), 309-388.

Welch, H., Walsh, J., & Larson, E. (1992). The cost of institutional care in Alzheimer's

disease: Nursing home and hospital use in a prospective cohort. Journal of the American Geriatrics Society, 40(221-224).

Williams, A., Challis, D., Deber, R., Watkins, J., Kuluski, K., Lum, J., et al. (2009).

Balancing institutional and community-based care: Why some older persons can age successfully at home while others require residential long-term care. Longwoods Review, Health Care Quarterly, 7(1), 95-105.

Williams, A., Deber, R., Lum, J., Montgomery, R., Peckham, A., Kuluski, K., et al.

(2009). Mapping the state of the art: Integrating care for vulnerable older populations. Prepared for the Ministry of Health and Long-term Care and the Canadian Institutes of Health Research. Toronto, Ontario: University of Toronto and Ryerson University.

Williams, A., Kuluski, K., Watkins, J., Montgomery, R., Lum, J., & Ying, A. (2009). The

Balance of Care. Toronto, ON: University of Toronto. Williams, A., Lum, J., Deber, R., Montgomery, R., Kuluski, K., Peckham, A., et al.

(2009). Aging at Home: Integrating Community-Based Care for Older Persons. HealthcarePapers, 10(1), 8-21.

Williams, A., & Watkins, J. (2009). The Champlain Balance of Care Project. Toronto,

Ontario: University of Toronto. Wolinsky, F., Callahan, C., Fitzgerald, J., & Johnson, R. (1993). Changes in functional

status and the risks of subsequent nursing home placement and death. Journals of Gerontology, Series A, Biological Sciences and Medical Sciences, 48(3), S94-S101.

139

Appendix 2A- Literature Review Strategy

My literature review strategy included key word searches, a hand search through

relevant journals, examination of gray literature (e.g. research reports) via relevant

websites, and theoretical readings recommended by members of my thesis committee

and Dr. Norah Keating (from the Department of Human Ecology, University of Alberta).

Details are provided below:

Key word search

The following search terms were entered into Scholars Portal, PubMed, and Wiley

Interscience:

Homecare (and) policy (and) Canada; Long-term care (and) policy (and) Canada;

predictors of long-term care placement; predictors of nursing home placement; nursing

home placement; Rural (and) urban senior*; rural senior*; rural older person*, Balance

of care and senior*; Balance of care (and) older person*; Rural (and) long term care

resident*; Rural (and) nursing home resident*; Rural (and) long-term care placement;

Rural (and) nursing home placement; Rural (and) long-term care; Rural (and) nursing

home; Long-term care placement; Rural homecare; Rural home care; Care transition*

and rural; Rural care setting* and senior*; Rural care setting* (and) older person*; Rural

(and) long-term care waiting list; Rural (and) nursing home waiting list; context(s) of

aging; social context(s) of aging; physical context(s) of aging; policy context(s) of aging;

built context(s) of aging; context(s) and aging; social context(s) and aging; physical

context(s) and aging; policy context(s) and aging; built context(s) and aging;

environment(s) of aging; social environment(s) of aging; physical environment(s) of

aging; policy environment(s) of aging; built environment(s) of aging; environment(s) and

aging; social environment(s) and aging; physical environment(s) and aging; policy

environment(s) and aging; built environment(s) and aging

Results: over 3,000 hits. Approximately 270 references met inclusion criteria: older

person (65 years and older); written in English; included a care setting- home and

140

community care, hospital, and/or long-term care home; focused on the role of demand

and/or supply side factors in predicting the site of care for older persons.

Handsearch

Last 5 years of Journal of Rural Health and Health and Social Care in the Community

Sources of Gray Literature

Included the following: King’s Fund, Personal Social Services Research Unit (PSSRU),

Department of Health, Hollander Analytical Inc, Canadian Institute of Health Information,

Ministry of Health and Long-term Care

Key Theoretical Readings

Baranek, P., Deber, R., & Williams, A. (2004a). Conceptual Framework. In Almost home: Reforming home and community care in Ontario (pp. 19-48). Toronto: University of Toronto Press.

Baranek, P., Deber, R., & Williams, A. (2004b). Introduction and Overview. In P. Baranek, R. Deber & A. Williams (Eds.), Almost Home: Reforming Home and Community Care in Ontario (pp. 3-18). Toronto: University of Toronto Press.

Bubolz, M., & Sontag, M. (1993). Human Ecology Theory. In P. Boss, W. Doherty, R. LaRossa, W. Schumm & S. Steinmetz (Eds.), Sourcebook of family theories and methods: A contextual approach (pp. 419-448). New York: Plenum Press.

DiMaggio, P., & Powell, W. (1983). The iron cage revisited: Institutional isomorphism and collective rationality in organizational fields. American Sociological Review, 48, 147-160.

Golant, S. (2003). The urban-rural distinction in gerontology: An update of research. In H.-W. Wahl, R. Schedit & P. Windley (Eds.), Aging in Context: Socio-Physical Environments (Vol. 23, pp. 280-312). New York: Springer Publishing Company.

Haldemann, V., & Wister, A. (1993). Environment and Aging. Journal of Canadian Studies, 28(1), 30.

Hall, P., & Taylor, R. (1996). Political science and the three new institutionalisms. Political Studies, 44, 936-957. Keating, N., & Phillips, J. (2008). A critical human ecology perspective on rural ageing.

In N. Keating (Ed.), Rural Ageing: A good place to grow old? (pp. 1-10). Bristol: Policy Press.

March, J., & Olsen, J. (2006). Elaborating on the "New Institutionalism". In R. Rhodes, S. Binder & B. Rockman (Eds.), The Oxford Handbook of Political Institutions (pp. 3-20). New York: Oxford University Press.

North, D. (1990). Institutions, Institutional Change, and Economic Performance. New York: Cambridge University Press.

Oliver, C. (1991). Strategic responses to institutional processes. Academy of Management Review, 16(1), 145-179.

141

Putnam, R. (1993). Making democracy work. Princeton, NJ: Princeton University Press. Robert, D., & Bitektine, A. (2009). The deinstitutionalization of institutional theory?

Exploring divergent agendas in institutional research. In D. Buchanan & A. Bryman (Eds.), The Sage Handbook of Organizational Research Methods (pp. 160-175). Thousand Oaks: Sage Publications.

Satariano, W. (2006). Epidemiology of Aging: An Ecological Approach. Sudbury, Masachusetts: Jones and Bartlett Publishers.

Thelen, K., & Steinmo, S. (1992). Historical Institutionalism in Comparative Politics. In S. Steinmo, K. Thelen & F. Longstreth (Eds.), Structuring politics: Historical Institutionalism in Comparative Politics Cambridge: Cambridge University Press.

Tolbert, P., & Zucker, L. (1996). Institutionalization of institutional theory. In S. Clegg, C. Hardy & W. Nord (Eds.), The handbook of organizational studies (pp. 175-190). Thousand Oaks, California: Sage.

Tuohy, C. (1999). Understanding the dynamics of the health care arena. In Accidental logics: The dynamics of change in the health care arena in the United States, Britain and Canada (pp. 3-24). New York: Oxford University Press. Wahl, H.-W., & Weisman, G. (2003). Environmental gerontology at the beginning of the

new millennium: Reflections on its historical, empirical, and theoretical development. The Gerontologist, 43(5), 616-627.

142

Appendix 2B- Long-term Care Facility Eligibility Criteria

143

Appendix 3A- Positions and Sectors of Steering Committee and Expert

Panels

Positions/ Sectors Represented in the Steering Committee

Community Care Manager, North West CCAC

Client Services Manager, North West CCAC Senior Integration Consultant, North West LHIN Aging at Home Lead, North West LHIN Manager of Utilization, Thunder Bay Region Health Sciences Centre (Hospital) Chief Nursing Officer, Nipigon District Memorial Hospital Vice President, Long-term Care Services, St. Joseph’s Care Group12 Manager of Ministry Funded Programs, Canadian Red Cross Society Community Services Facilitator, Wesway (Respite Program) Manager, Jasper Supportive Housing Program Administrator, District of Kenora Home for the Aged Administrator, Grandview Lodge Long-term Care Home Chief Nursing Officer, St. Joseph’s Care Group Psychogeriatric Resource Consultant, St. Joseph’s Care Group

Positions/ Sectors Represented in Expert Panel

Utilization Manager, Thunder Bay Regional Health Sciences Centre (Hospital) Medical Social

Worker, Thunder Bay Regional Health Sciences Centre (Hospital)

Physiotherapist, Partners in Rehab

Mental Health Case Manager, St. Joseph’s Care Group

Community Care Coordinator, North West CCAC

Community Service Coordinator, Canadian Red Cross Society

Discharge and Transfer Facilitator, St. Joseph’s Care Group

Registered Nurse, Seniors Psychiatry Day Program, St. Joseph’s Care Group

12 Includes: St. Joseph's Hospital, Balmoral Centre, Behavioural Sciences Centre, Diabetes Health

Thunder Bay, Hogarth Riverview Manor, Lakehead Psychiatric Hospital, Sister Margaret Smith Centre, St.

Joseph's Health Centre and St. Joseph's Heritage. These organizations provide long-term care and

support; complex rehabilitation; supportive housing; and mental health and addictions programs in the

Districts of Thunder Bay and Kenora-Rainy River.

144

Case Manager, Jasper Support Program (Supportive Housing)

Family Resource Facilitator, Wesway

Social Worker, Geraldton District Hospital

Mental Health Worker, Atikoken Family Health Team

Director, Community Support Services, Pinecrest Home for the Aged

RN, Case Manager, North West CCAC

Coordinator, Community Support Services, Northwestern Independent Living Services

RN, Community Care Coordinator, North West CCAC

Physiotherapist, McCausland Hospital

Others sectors contacted but unable to participate

Manager Long-term Care, St. Joseph’s Nursing Home

Manager, Long-term care and community services programs

Support Services Coordinator, 55+ centre

Supervisor, Meals on Wheels program

145

Appendix 3B- Ethics Approval

146

Appendix 3C- Weighted Averages for Community Support Services

*only one provider reported a cost

**regional average (for all of NWO) for 04/05- program reported because the program

reported in 07/08 no longer exists

Formula for weighting costs = (% of clientele x cost for service A) + (% of clientele x

cost for service B), etc, = weighted unit cost

Ministry Cost- Name of Service

Thunder Bay weighted cost Region weighted cost

01A- Alzheimer Day Program

= $113*

(0.36 x 74) + (0.64 x 56) = 26.64 + 35.84 = $62.48

01B-Frail Seniors Day Program

(0.28 x 116) + (0.72 x 113)

= 32.48 + 81.36

= $113.84

= $56.00*

01C – Integrated Day Program = $113*

(0.21 x 101) + (0.79 x 56) + 21.21 + 44.24

= $65.45

02A- Meals on Wheels

= $11*

(0.11 x 15) + (0.18 x 14) + (0.09 x 15) + (0.53 x 9) + (0.09 x 1) = 1.65 + 2.52 + 1.35 + 4.77 + 0.09 = $10.38

03A- Congregate Dining

= (0.22 x 20) + (0.78 x 7)

= 4.4+ 5.46

= $9.86

(0.40 x 14) + (0.15 x 20) + (0.17 x 10) + (0.28 x 6)

= 5.6 + 3 + 1.7 + 1.68

= $11.98

147



04A- Transportation

(0.49 x 17) + ( 0.30 x 20) + (0.21 x 24)

= 8.33 + 6 + 5.04

= $19.37

(0.17 x 20) + (0.11 x 24) + (0.13 x 13) + (0.31 x 7) + (0.08 x 11) + (0.17 x 4) + (0.03 x 72)

= 3.4 + 2.64 + 1.69 + 2.17 + 0.88 + 0.68 + 2.16

= $13.62

05C- Home Maintenance and Repair

No data available (0.27 x 37) + (0.18 x 17) + (0.11 x 57) + (0.17 x 25) + (0.13 x 115) + (0.10 x 33) + (0.05 x 54)

= 9.99 + 3.06 + 6.27 + 4.25 + 14.95 + 3.3 + 2.7

= $44.52

06A- Friendly Visiting

(0.57 x 23) + (0.41 x 22) + (0.02 x 45)

= 13.11 + 9.02 + 0.9

= 23.03

0.04 x 2 + 0.11 x 22 + 0.08 x 19 + 0.20 x 1 + 0.56 x 18 + 0.01 x 45

= 0.08 + 2.42 + 1.52 + 0.2 + 10.08 + 0.45

= $14.75

07A- Security Checks/Reassurance

= $6.74 (old code from 04/05)

0.83 x 1 + 0.17 x 1

= 0.83 + 0.17

= $1.00

08A- Caregiver Support Counseling

(0.35 x 45) + (0.65 x 47)

= 15.75 + 30.55

= $46.30

= $41.03**

08B- Caregiver Support Training and Education

= $47.00* = $22.86**

08C- Caregiver Support- Paid Staff

= $33.00* No data available

148



08F- Caregiver Support Volunteer

(0.58 x 23) + (0.42 x 22)

= 13.34 + 9.24

= $22.58

08F- Caregiver Support Volunteer

= $22.00*

149

Appendix 3D- Expert Panel Invitation

<insert date here>

<insert name, position, and address here>

Dear <inset name>:

We are pleased to invite you to participate as a member of the North West Balance of Care Expert Panel. The Balance of Care project is a groundbreaking research study which asks, “What proportion of individuals currently on the long-term care (LTC) home wait list in Northwestern Ontario could be maintained at home if given access to appropriate community-based care packages?”

This study is being conducted by a multidisciplinary team of established researchers at the University of Toronto, in collaboration with the North West LHIN and North West CCAC. It adapts a Balance of Care (BoC) approach pioneered by researchers in the UK to assess the service mix that would be required to sustain individuals currently at risk of losing their independence in the community. While many individuals deemed eligible for a LTC home placement have such high needs that they cannot be safely maintained at home, a growing body of evidence suggests that many others could be appropriately and cost-effectively supported in the community, if given access to integrated, managed home and community care packages.

However, to be relevant, and to accurately reflect the vital roles played by all sectors of the care continuum, we are asking you and leaders of other organizations including hospitals, LTC homes, community health centres and community support agencies, to join an Expert Panel which will examine the characteristics of people waiting for a long-term care placement in Northwestern Ontario and design alternative community based care packages. Knowing that you are very busy, we are willing to negotiate meeting dates and times. In previous projects, this exercise was carried out in 2 full days plus 1 half day. Since some members of this panel will be traveling from the surrounding region, it may be more efficient to run these meetings over 3 consecutive days tentatively scheduled for Tuesday June 17th -Thursday June 19th from 9:00am-5pm.

150

Note: the last day may conclude early; however we ask that you keep the afternoon open in case additional time is required to complete the exercise. These meetings will be held at the North West CCAC in Thunder Bay, ON. Light refreshments in the morning and lunch will be provided on each of these days. Please email Kerry Kuluski, Project Lead @ <insert email here> or <insert phone number here>to confirm your participation.

The results of parallel BoC studies conducted by the research team in partnership with the Waterloo-Wellington CCAC and the Toronto-Central CCAC with service providers from across the care continuum, suggests that up to half of those currently waiting for LTC beds in both regions could be cared for in the community with better outcomes for individuals and their carers, and lower or comparable costs for the health care system.

By establishing evidence-based benchmarks for the most appropriate mix of institutional and community-based services at the local level, we feel that this research can make a crucial contribution to ongoing health system integration efforts in Northwestern Ontario and across the rest of the province, particularly in light of the provincial government’s recent announcement of major new funding aimed at helping seniors “age in place.”

Please don’t hesitate to contact us if you have any questions or concerns prior to our meetings.

We look forward to working with you.

Sincerely,

<insert signatures here>

151

Appendix 4A- Comparison of Thunder Bay and Region Wait-list Samples

(with individuals already in LTC facilities taken out of analysis)

Variable

Thunder Bay

n = 338

Region n = 355

Cognition

Intact

Not Intact

33% 67%

52% 48%

Activity of Daily Living Impairment

No Difficulty


33% 36% 31%

68% 17% 15%

Instrumental Activity of Daily Living Impairment

No Difficulty


0% 25% 75%

2% 53% 45%

Primary Caregiver lives with Client?

Yes No

38% 62%

35% 65%

After taking out individuals who were currently in a LTC facility bed waiting for their bed

or facility of choice, the overall distributions did not change. Individuals in Thunder Bay

continued to demonstrate greater signs of functional and cognitive decline, IADL

impairment continued to be experienced by most, and most individuals did not have

access to a live-in caregiver (two-thirds in both samples).

152

Appendix 4B- Other Known Risk Factors for Long-term Care Facility

Placement- Thunder Bay and Region Comparison

Gender- There were no statistically significant differences on gender for individuals

wait-listed in Thunder Bay relative to the Region (64% and 67% were female

respectively)

X2 = .621, p = .471

Marital Status- There were no differences in marital status between the Thunder Bay

sample (30% were marred) versus the Region sample (33% were married).

X2 = 1.222, p = .269

Live in Caregiver a Spouse- There were no significant differences in numbers of live-in

spousal caregivers between the Thunder Bay sample (23%) and the Region sample

(24%).

X2 = .869, p = .360

Physically abusive behavioral symptoms- There were no differences in the extent to

which individuals were engaging in physically abusive behavioral symptoms (less than

1% in both samples).

X2 = 1.211, p = .546

Alzheimer’s Disease- Individuals in Thunder Bay were more likely to be identified as

having Alzheimer’s disease (25%) than individuals in the Region (9%), the differences

were statistically significant.

X2 = 37.699, p < 0.01

Other Dementia (besides Alzheimer’s) - There were differences in rates of other

types of dementia between Thunder Bay (22%) and the Region (21%)

X2 = .128, p = .739

153

Psychiatric Diagnoses- Individuals in Thunder Bay were more likely to have a

psychiatric diagnosis (18%) than individuals in the Region (12%), the differences were

statistically significant.

X2 = 5.846, p < 0.05

Depression- Individuals in Thunder Bay scored higher on the depression rating scale

(1.77 out of maximum score 13) compared to individuals in the Region (1.02/13),

reflecting greater depression. Differences were statistically significant; however, from a

practical standpoint, levels of depression in both geographic areas were quite low.

Thunder Bay (M = 1.77, SD = 2.206)

Region (M = 1.02, SD = 2.076)

t (832) = 5.103, p < 0.01

X2 = 5.846, p < 0.05

Bladder Continence- The Thunder Bay sample was more likely to be experiencing

some level of urinary incontinence (64%) compared to the Region sample (42%). The

difference was statistically significant.

X2 = 43.153, p < 0.01

Bowel Continence- The Thunder Bay sample was more likely to have some level of

bowel incontinence (35%) compared to the Region sample (15%). The difference was

statistically significant.

X2 = 41.077, p < 0.01

154

Appendix 4C- Stratifications of Wait-List Samples

Stratification Cognition ADL Difficulty IADL Difficulty Live with Caregiver?

% Thunder Bayn= 441

% Region n = 351

Copper Intact No Some Yes 1% 6%

Davis Intact No Some No 7% 25%

Fanshaw Intact No Great No 4% 5%

Jones Intact Some Some No 3% 1%

Kringle Intact Some Great Yes 3% 1%

Lambert Intact Some Great No 5% 3%

Quinn Intact Great Great Yes 3% 1%

Rogers Intact Great Great No 5% 2%

Upperton Not Intact No Some Yes 2% 5%

Vega Not Intact No Some No 3% 9%

155

Stratification Cognition ADL Difficulty IADL Difficulty Live with Caregiver?

% Thunder Bayn= 441

% Region n = 351

Wong Not Intact No Great Yes 3% 5%

Xavier Not Intact No Great No 7% 8%

CCameron Not Intact Some Great Yes 8% 6%

DDaniels Not Intact Some Great No 14% 5%

IInnis Not Intact Great Great Yes 14% 7%

JJohns Not Intact Great Great No 12% 6%

156

Appendix 4D- Case Vignettes, Care Packages and Cost Comparisons

Copper Case Vignette “Copper is cognitively intact and functionally independent in all activities of daily living

(ADLs) with the exception of bathing (limited assistance is required). Copper has no

difficulty using the phone, some difficulty with transportation, managing medications and

preparing meals; great difficulty with housekeeping. Copper has a live-in caregiver (a

spouse) who provides advice/emotional support and assistance with instrumental

activities of daily living (IADLs).

1) Cognition- Intact (short-term memory recall is good; procedural memory is good (can

perform all or most tasks in a multi-task sequence); makes



wandering)







4) Caregiver (in home?)- Yes, the caregiver is a spouse who provides advice/emotional

support and assistance with IADLs.

157

Copper Care Package

Service Frequency/week Frequency/13 weeks TOTAL Cost to MOHLTC for 13 weeks

Thunder Bay Region Thunder

Bay Region Thunder Bay Region

Day Program- Frail Seniors 2 1 *24 13 $2732.16 $728.00

Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 2 2 26 26 $503.62 $354.12

Security Checks/Reassurance 5 65 $438.10

Caregiver Support-Counseling 1 $41.03

CCAC Occupational Therapy 1 3 $109.29 $327.87

CCAC Personal Support 1 1 13 13 $327.21 $327.21

Emergency Response System** $213.62 $213.62

Community Based Package Cost $5039.00 $2666.55

LTC Bed Cost to MOHLTC $7774.13 $7774.13

*12 week Day Program **1 x installation fee

158

Davis Case Vignette

“Davis is cognitively intact and functionally independent in all ADLs with the exception of

bathing (limited assistance is required). Davis has no difficulty using the phone; some

difficulty with transportation, managing medications and preparing meals; and great

difficulty with housekeeping. Davis does not have a live-in caregiver. Davis’ caregiver is

an adult child who lives outside of the home. This caregiver provides advice/emotional

support and assistance with IADLs.”





wandering)







4) Caregiver (in home?)- No. Has an adult/child caregiver living outside of the home

who provides advice/emotional support and assistance with IADLs.

159

Davis Care Package




Day Program- Frail Seniors 2 3 24 39 $2732.16 $2184.00

Meals on Wheels 5 5 65 65 $715.00 $674.70

Congregate Dining 2 26 $311.48

Transportation 6 6 78 78 $1510.86 $1062.36

Friendly Visiting 1 13 $299.39

Caregiver Support-Counseling 1 13 $533.39

CCAC Occupational Therapy 1 1 3 $109.29 $327.87


Emergency Response System $213.62 $213.62

Community Based Package $6561.95 $5634.63

LTC Bed Cost $7774.13 $7774.13

160

Fanshaw Case Vignette

“Fanshaw is cognitively intact and functionally independent in all ADLs with the

exception of bathing (limited assistance is required) and eating (set-up help needed).

Fanshaw has no difficulty using the phone and great difficulty with transportation,

managing medications, housekeeping and preparing meals. Fanshaw does not have a

live-in caregiver.” Fanshaw’s caregiver is an adult child who lives outside of the home.

This caregiver provides advice/emotional support and assistance with IADLs.





wandering)

2) ADL- No help required with most ADLs (locomotion inside the home, toilet use and

personal hygiene), client requires limited assistance when bathing (still highly

involved in activity but requires some assistance/guided maneuvering and set-up

help when eating.

3) IADL- No difficulty using the phone; great difficulty with transportation,

housekeeping, meal preparation and managing medications (little or no involvement

in the activity is possible).

4) Caregiver (in home?)- No. Caregiver is an adult child who lives outside of the home.

The caregiver provides advice/emotional support and assistance with IADLs.

161

Fanshaw Care Package





Meals on Wheels 5 5 65 65 $715.00 $674.70


Transportation (1 way-trip) 6 6 78 78 $1510.86 $1062.36



CCAC Occupational Therapy 1 total 4 total $109.29 $437.16

CCAC Personal Support 7.5 2.5 97.5 32.5 $2454.08 $818.03

Emergency Response System $213.62 213.62


LTC Bed Cost $7774.13 $7774.13

162

Jones Case Vignette

“Jones is cognitively intact and requires assistance with all ADLs (set-up help with

locomotion in the home and eating; supervision when toileting and engaging in personal

hygiene activities and extensive assistance when bathing). Jones also requires

assistance with most IADLs (has no difficulty using the phone but exhibits some

difficulty managing medications, preparing meals and with transportation and has great

difficulty with housework). Jones does not have a live-in caregiver. Jones’s caregiver is

an adult child who lives outside of the home. This caregiver provides advice/emotional






wandering)

2) ADL- set-up help required with locomotion in the home and eating; oversight,

encouragement and cuing provided when toileting and engaging in personal hygiene

activities; extensive assistance required when bathing (full performance of part of

activity performed by others).

3) IADL- No difficulty using the phone; some difficulty managing medications, preparing

meals and with transportation (needs some help, is very slow/fatigues); great


4) Caregiver (in home?)- No. Caregiver is an adult child who lives outside of the home.

The caregiver provides advice/emotional support and assistance with IADLs.

163

Jones Care Package





Meals on Wheels 5 5 65 65 $715.00 $674.70


Transportation 6 6 78 78 $1510.86 $1062.36


CCAC Physiotherapy 2 8 $191.14 $764.56





LTC Bed Cost $7774.13 $7774.13

164

Kringle Case Vignette

“Kringle is cognitively intact and requires assistance with all ADLs (set-up help when

eating; supervision when engaging in personal hygiene activities; limited assistance with

locomotion in the home; extensive assistance with bathing and maximal assistance

when toileting. Kringle also requires assistance with all IADLs (has some difficulty using

the phone, great difficulty managing medications, preparing meals, with transportation

and housework). Kringle has a live-in caregiver. Kringle’s caregiver is an adult child who

provides advice/emotional support and assistance with IADLs.”


perform all or most tasks in a multi-task sequence); some difficulty making decisions

in new situations only; can express ideas without difficulty and understand others;

does not display any behavioral/verbal problems- e.g. wandering)

2) ADL- set-up help required when eating; oversight, encouragement and cuing

provided when engaging in personal hygiene activities; limited assistance with

locomotion in the home (still highly involved in activity but requires some

assistance/guided maneuvering); extensive assistance required when bathing (full

performance of part of activity performed by others); maximal assistance required

when toileting (client performs less than 50% of subtasks on own).

3) IADL- Some difficulty using the phone (needs some help, is very slow/fatigues);

great difficulty managing medications, preparing meals and with transportation and

housekeeping (little or no involvement in the activity is possible).

4) Caregiver (in home?)- Yes. Caregiver is an adult child who provides

advice/emotional support and assistance with IADLs. Half of the caregivers in this

category are unable to continue caregiving due to health decline.

165

Kringle Care Package





Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 2 1 26 13 $503.62 $177.06


Caregiver Support- Paid Staff 6 78 $2574.00



CCAC Social Work 5 $922.20



Long-term Care Respite 3 months/yr 3 months/yr 22.44 22.44 $1917.05 $1917.05


LTC Bed Cost $7774.13 $7774.13

166

Lambert Case Vignette

“Lambert is cognitively intact and requires some assistance with ADLs (set-up help

when eating, supervision with locomotion in the home and personal hygiene activities;

limited assistance with toileting and bathing). Lambert has some difficulty using the

phone and great difficulty with transportation, meal preparation, managing medications

and housekeeping. Lambert does not have a live-in caregiver. Lambert has an adult-

child caregiver who lives outside the home. This caregiver provides advice/emotional






wandering)

2) ADL- Set-up help when eating, oversight and cuing provided with locomotion in the

home and personal hygiene activities; limited assistance is required with toileting

and bathing (still highly involved in activity but requires some physical

assistance/guided maneuvering).

3) IADL- Some difficulty using the phone (needs some help, is very slow/fatigues);

great difficulty with transportation, meal preparation, managing medications and

housekeeping (little or no involvement in the activity is possible).

4) Caregiver (in home?)- No. Adult child caregiver lives outside of the home. The

caregiver provides advice/emotional support and assistance with IADLs.

167

Lambert Care Package





Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 6 6 78 78 $1510.86 $1062.36

Friendly Visiting 1 1x/2 weeks 13 6 $299.39 $88.50








LTC Bed Cost $7774.13

168

Quinn Case Vignette

“Quinn is cognitively intact but requires assistance with all ADLs (limited assistance

required when eating; maximal assistance when bathing and engaging in personal

hygiene activities; totally dependent on others with locomotion in the home and

toileting). Quinn also requires assistance with all IADLs (great difficulty with

transportation, using the phone, managing medications, preparing meals, and

housekeeping). Quinn has a live-in caregiver.” Quinn’s caregiver is a spouse who

provides advice/emotional support and assistance with IADLs. Many of the caregivers in

this category also provide assistance with ADLs”.





wandering).

2) ADL- Limited assistance required when eating (highly involved in activity but

requires some assistance/guided maneuvering); maximal assistance required when

bathing and engaging in personal hygiene activities (client performs less than half of

the tasks for these activities and may require a 2 person assist); totally dependent

on others with locomotion in the home and toileting (entire task performed by

others).

3) IADL- Great difficulty with transportation, using the phone, managing medications,

preparing meals and housekeeping (little or no involvement in the activity is

possible).

4) Caregiver (in home?)- Yes. The caregiver is a spouse who provides

advice/emotional support and assistance with IADLs. Many of the caregivers in this

group also provide assistance with ADLs. Half of the caregivers in this category are

experiencing health decline and will not be able to continue caregiving activities.

169

Quinn Care Package




Day Program- Integrated 2 26 $1701.70

Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 2 4 26 52 $503.62 $708.24



Caregiver Support- Paid Staff 6 + 2x48 blocks/ year 101.93 $3363.69


CCAC Occupational Therapy 2 10 $1092.90




Long-term Care Home Respite 3 months/yr 3 months/yr 22.44 22.44 $1917.05 $1917.05


LTC Bed Cost $7774.13 $7774.13

170

Rogers Case Vignette

“Rogers is cognitively intact but requires assistance with ADLs (supervision required

when eating); maximal assistance with personal hygiene activities; and is totally

dependent on others with locomotion in the home, toileting and bathing. Rogers also

requires assistance with all IADLs (some difficulty using the phone and great difficulty

with transportation, medications management, meal preparation and housekeeping).

Rogers does not have a live-in caregiver. Rogers has an adult child caregiver who lives

outside of the home. This caregiver provides advice/emotional support and assistance

with IADLs.”


perform all or most tasks in a multi-task sequence) some difficulty making decisions

in new situations only; can express ideas without difficulty and understand others;

does not display any behavioral/verbal problems- e.g. wandering).

2) ADL- oversight and cuing needed when eating; maximal assistance needed with

personal hygiene activities (client performs less than half of the tasks for these

activities and may require a 2 person assist); totally dependent on others with

locomotion in the home, toileting and bathing (entire task performed by others).

3) IADL- Some difficulty using the phone (needs some help, is very slow/fatigues),

great difficulty with transportation, medications management, meal preparation and

housekeeping).

4) Caregiver (in home?)- No. Adult child caregiver lives outside of the home. This


171

Rogers Care Package

No package was created by rural expert panel, deemed unsafe for individuals in this group to stay at home




Meals on Wheels 5 65 $715.00

Transportation 6 78 $1510.86

CCAC Physiotherapy 6 6 $573.42


CCAC Social Work 5 5 $922.2

CCAC Personal Support 14 182 $4580.94

Emergency Response System $213.62

Community Based Package Cost $8625.33

LTC Bed Cost $7774.13 $7774.13

172

Upperton Case Vignette

“Upperton is not cognitively intact but functionally independent in all ADLs with the

exception of bathing (supervision required). Upperton has some difficulty with phone

use, transportation, managing medications, preparing meals and great difficulty with

housekeeping. Upperton has a live in spouse caregiver. This caregiver provides

advice/emotional support and assistance with IADLs.

1) Cognition- Not Intact (short term memory and procedural memory problem; in

specific situations decisions become poor or unsafe and cues/supervision are

necessary at those times; has difficulty finding words or finishing thoughts but if

given time no prompting is required; usually understands others (misses some/part

intent of message but comprehends most conversation with little or no prompting);

does not display any behavioral/verbal problems- e.g. wandering).

2) ADL- independent in eating, locomotion inside the home, toilet use and personal

hygiene). Supervision required when bathing.

3) IADL- Some difficulty with phone use, transportation, managing medications,

preparing meals (needs some help, is very slow/fatigues); great difficulty with

housekeeping (little or no involvement in activity is possible).


advice/emotional support and assistance with IADLs.

173

Upperton Care Package




Day Program- Alzheimer’s 2 26 $2938.00


Meals on Wheels 5 5 65 65 $715.00 $674.7

Transportation 6 2 78 26 $1510.86 $354.12

Friendly Visiting 1 1 13 13 $299.39 $191.75



Caregiver Support- Training and Education 1x/month =

3.25 $152.75

Caregiver Support- Paid Staff 8 + 6 x 48

hour blocks/ year

175.8 $5801.40

Caregiver Support- Volunteer 1x/month = 3.25 $71.50

CCAC Physiotherapy 1 $95.57






LTC Bed Cost $7774.13 $7774.13

174

Vega Case Vignette

“Vega is not cognitively intact but functionally independent in all ADLs with the

exception of bathing (limited assistance is required). Vega has no difficulty using the

phone, some difficulty with transportation, preparing meals and managing medications

and great difficulty with housework. Vega does not have a live-in caregiver. Vega has

an adult child caregiver who lives outside the home. This caregiver provides

advice/emotional support and assistance with IADLs.”

1) Cognition- Not Intact (short term memory problem; procedural memory is ok). In

specific situations decisions become poor or unsafe and cues and supervision are

necessary at those times. Has difficulty finding words or finishing thoughts but if

given time no prompting is required. Usually understood by others (misses some

part/intent of message but comprehends most conversation with little prompting).

Does not display any behavioral/verbal problems- e.g. wandering).

2) ADL- independent in eating, locomotion inside the home, toilet use and personal

hygiene). Limited assistance required when bathing (highly involved in activity but

requires some assistance/guided maneuvering).

3) IADL- No difficulty using the phone, some difficulty with transportation, preparing

meals and managing medications (needs some help, is very slow/fatigues). Great

difficulty with housework (little or no involvement in activity is possible).

4) Caregiver (in home?)- No. Adult child caregiver lives outside of the home. This


175

Vega Care Package






Meals on Wheels 5 5 65 65 $715.00 $674.70


Transportation 6 6 78 78 $1510.86 $1062.36



Caregiver Support- Training and Education 1x/month =

3.25 $152.75








LTC Bed Cost $7774.13

176

Wong Case Vignette

“Wong is not cognitively intact but independent in most ADLs (locomotion in the home,

personal hygiene activities and toileting). Needs help setting up when eating and

requires limited assistance required when bathing. Wong experiences some difficulty

with transportation and phone use and great difficulty with meal preparation, medication

management and housekeeping. Wong has a live-in caregiver.” Wong’s caregiver is a

spouse who provides emotional support and assistance with ADLs and IADLs”.

1) Cognition- Not Intact (short term memory and procedural memory problem.

Decision-making is consistently poor/unsafe, cues/supervision required at all times).

Has difficulty finding words or finishing thoughts but if given time no prompting is

required. Usually understood by others (misses some part/intent of message but

comprehends most conversation with little prompting). Does not display any

behavioral/verbal problems- e.g. wandering).

2) ADL- Independent in locomotion inside the home, personal hygiene activities and

toileting. Set-up help required when eating and limited assistance required when

bathing (highly involved in activity but requires some assistance/guided

maneuvering).

3) IADL- Some difficulty with transportation and using the phone; great difficulty with

meal preparation, housekeeping and managing medications (little or no involvement

in the activity is possible).

4) Caregiver (in home?)- Yes (spouse) - provides advice/emotional support and

assistance with ADLs and IADLs.

177

Wong Care Package


Thunder Bay Region Thunder Bay Region Thunder Bay Region



Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 1 1 13 13 $251.81 $177.06



Caregiver Support- Training, Education 1x/month =

3.25 $152.75



hour blocks/ year

175.8 $5801.40








LTC Bed Cost $7774.13 $7774.13

178

Xavier Case Vignette

“Xavier is not cognitively intact but independent with locomotion in the home and

toileting. Xavier requires set-up help when eating and engaging in personal hygiene

activities and requires limited assistance when bathing. Xavier experiences some

difficulty using the phone and great difficulty with housekeeping, meal preparation,

managing medications, and transportation. Xavier does not have a live-in caregiver.

Xavier’s caregiver is an adult child who lives outside the home. This caregiver provides

advice/emotional support and assistance with IADLs.”

1) Cognition- Not Intact (short term and procedural memory problem). In specific

situations, decision become poor or unsafe and cues/supervision are necessary at

those times. Has difficulty finding words or finishing thoughts but if given time, little

or no prompting is required. Misses some part/intent of message, but comprehends

most conversation with little or no prompting. Does not display any behavioral/verbal

problems- e.g. wandering).

2) ADL- Independent with locomotion inside the home and toileting. Set-up help

required when eating and with personal hygiene activities. Limited assistance

required when bathing (highly involved in activity but requires guided maneuvering).

3) IADL- Some difficulty using phone (needs some help, is very slow/fatigues), great

difficulty with housekeeping, meal preparation, managing medications and

transportation (little or no involvement in the activity is possible).

4) Caregiver (in home?)- No. Adult child caregiver lives outside of the home and

provides advice/emotional support and assistance with IADLs

179

Xavier Care Package






Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 6 6 78 78 $1510.86 $1062.36



Caregiver Support- Training, Education 1x/month = 3.25 $152.75





CCAC Social Work




LTC Bed Cost $7774.13 $7774.13

180

C. Cameron Case Vignette

“C. Cameron is not cognitively intact and requires assistance with all ADLs (supervision

with locomotion in the home and eating, limited assistance with personal hygiene

activities and toileting and extensive assistance with bathing). C. Cameron experiences

great difficulty with all IADLs (housekeeping, meal preparation, managing medications,

transportation and phone use). C. Cameron has a live-in spousal caregiver. This

caregiver provides advice/emotional support, assistance with IADLs and ADLs.”


Decisions consistently poor or unsafe, cues/supervision required at all times. Has

difficulty finding words or finishing thoughts, prompting usually required. Responds

adequately to simple, direct communication). Does not display any behavioral/verbal


2) ADL- Oversight, encouragement and cuing required with locomotion in the home

and eating; limited assistance needed with personal hygiene activities and toileting

(client is highly involved in activity but requires some assistance/guided

maneuvering) and extensive assistance with bathing (full performance of part of

these activities performed by others).

3) IADL- Great difficulty with housekeeping, meal preparation, managing medications,

phone use and transportation (little or no involvement in the activity is possible).


advice/emotional support, assistance with IADLs and ADLs. Up to 40% of the

caregivers in this group are experiencing stress and/or health decline.

181

C. Cameron Care Package






Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 2 1 26 13 $503.62 $177.06


Caregiver Support- Training, education 1x/month =

3.25 $152.75



hour blocks/ year

175.8 $5801.40


CCAC Physiotherapy 6 6 10 $573.42 $955.70






LTC Bed Cost $7774.13 $7774.13

182

D. Daniels Case Vignette

“D. Daniels is not cognitively intact and requires assistance with all ADLs (set-up help

when eating, supervision with locomotion in the home and personal hygiene activities,

limited assistance with toileting and extensive assistance with bathing). D. Daniels

experiences great difficulty with all IADLs (housekeeping, meal preparation, managing

medications, phone use and transportation). D. Daniels does not have a live-in

caregiver. D. Daniels’ caregiver is an adult child who lives outside of the home and

provides advice/emotional support and assistance with IADLs.”

1) Cognition- Not Intact (short term and procedural memory problem. In specific

situations, decisions become poor or unsafe and cues and supervision are

necessary at those times. Has difficulty finding words or finishing thoughts but if

given enough time, little or no prompting is required. Misses some part/intent of

message; with prompting can often comprehend conversation. Does not display any

behavioral/verbal problems- e.g. wandering).

2) ADL- Set-up help required when eating. Oversight, encouragement and cuing

required with locomotion in the home and personal hygiene activities; limited

assistance when toileting (client is still highly involved in activity but requires some

assistance/guided maneuvering). Extensive assistance required when bathing (client

perform only 50% of tasks on own, full performance required by others for part of

tasks).

3) IADL- Great Difficulty with housekeeping, meal preparation, managing medications,

phone use and transportation (little or involvement in the activity is possible).

4) Caregiver (in home?)- No. Adult child caregiver lives outside of the home and

provides advice/emotional support and assistance with IADLs. Just over 30% of

caregivers in this group are showing signs of stress.

183

D. Daniel’s Care Package





Meals on Wheels 5 65 $715.00

Transportation 4 52 $1007.24


Caregiver Support- Training, education 1x/month = 3.25 $152.75


CCAC Social Work 5 total $922.20

CCAC Personal Support 14 182 $4580.94

Emergency Response System $213.62

Community Based Package Cost $12189.93

LTC Bed Cost $7774.13 $7774.13

184

I Innis- Case Vignette

“I Innis is not cognitively intact and requires assistance with all ADLs (extensive

assistance required when eating; maximal assistance required with locomotion in the

home and personal hygiene activities; totally dependent on others when toileting and

bathing). I. Innis also experiences great difficulty with all IADLs (housekeeping, meal

preparation, managing medications, phone use and transportation). I.Innis has a live-in

caregiver. This caregiver provides advice/emotional support and assistance with ADLs,

IADLs.”

1) Cognition- Not Intact (short term and procedural memory problem; never/rarely

makes decisions; ability is limited to making concrete requests; responds adequately

to simple, direct communication).

2) ADL- extensive assistance required when eating (client perform only 50% of tasks

on own, full performance required by others for part of tasks); maximal assistance

required with locomotion in the home and personal hygiene activities (client performs

less than 50% of subtasks on own) ;totally dependent on others when toileting and

bathing

3) IADL- Great Difficulty with all IADLs (housekeeping, meal preparation, managing

medications, phone use and transportation) - little or no involvement in activity is

possible.

4) Caregiver (in home?)- Yes. Caregiver is a spouse who provides advice/emotional

support and assistance with ADLs and IADLs. Some signs of health decline of

caregiver are evident.

185

I Innis Care Package





Meals on Wheels 5 5 65 65 $715.00 $674.70

Transportation 4 1 52 13 $1007.24 $177.06




Caregiver Support- Training, education 1x/month =

3.25 $152.75


hour blocks/ year

175.8 $5801.40

CCAC Physiotherapy 6 6 10 $573.42 $955.70


CCAC Social Work 5 65 $11988.60





LTC Bed Cost $7774.13 $7774.13

186

J. Johns- Case Vignette

“J. Johns is not cognitively intact and requires assistance with all ADLs (supervision

when eating; maximal assistance with personal hygiene activities; totally dependent on

others with locomotion in the home, toileting and bathing). J.Johns has great difficulty

with all IADLs (housekeeping, meal preparation, managing medications, phone use and

transportation). J. Johns does not have a live-in caregiver.”J. Johns has a caregiver

outside of the home who provides advice, emotional support and assistance with

IADLs.”


Decisions consistently poor or unsafe, cues/supervision required at all times. Has

difficulty finding words or finishing thoughts, prompting usually required. Responds

adequately to simple, direct communication). Does not display any behavioral/verbal


2) ADL- Oversight, encouragement and cuing needed when eating; Maximal

assistance required with personal hygiene activities (client completes less than 50%

of subtasks and may require a 2 person assist). Totally dependent in locomotion in

the home, toileting and bathing (full performance of activities by others).

3) IADL- Great Difficulty with housekeeping, meal preparation, managing medications,

phone use and transportation (little or no involvement in activity is possible).

4) Caregiver (in home?)- No (caregiver is a non-spouse relative who lives outside of

the home and provides advice/emotional support and assistance with IADLs).

J Johns- No packages created- deemed unsafe for individuals in this group to stay at home

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