Aging With A Developmental Disability
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Transcript of Aging With A Developmental Disability
Aging With A Developmental
DisabilityShahin Shooshtari, PhD
Assistant ProfessorDepartments of Family Social Sciences
& Community Health SciencesUniversity of Manitoba
Researcher, St Amant Research Centre
OUTLINEI. Background II. Prevalence III. Health disparities and DDIV. Aging with DD – Key IssuesV. Current Gaps in Knowledge VI. COA Funded Research Project
DEFINITION
Developmental Disabilities (DDs) are a diverse group of conditions that are:
due to mental and/or physical impairments;
begin anytime during development up to age 22;
usually last throughout a person’s lifetime. (US Department of Health and Human Development, 2008)
DEFINITION
People with DD have problems with major life activities such as: Language Mobility Learning Self-help Independent living
DEVELOPMENTL DISABILITES Life-long conditions
Direct and indirect impacts on all aspects of individuals’ lives.
Those affected will need lifelong family and organizational support for health, education and social services, such as housing, recreation, and transportation.
TYPES1. Genetic syndromes (e.g., down
syndrome, Fragile X syndrome, and Prader-Willi syndrome)
2. Problems with the central nervous system (e.g., cerebral palsy)
3. Milder developmental disabilities
PREVAELNCE In 2001, WHO estimated that 3% of the
world population has some form of developmental disability.
There are variations in the prevalence due to: (1) true difference in prevalence(2) differences in definition of DD(3) differences in case-finding techniques(Schrojenstein Lantman-de Valk et al. 1997)
POPULATION with DDCANADA, 2001
Population Canada
Population aged 15+ with DD
120,140
15-64 109,060 15-24 26,010 25-44 38,280 45-64 44,770 65 and over 11,080 65-74 4,010 75+ 7,070Source: Statistics Canada (2002). A Profile of Disability in
Canada, 2001.
YearLife
Expectancy at Birth (years)
M F
1921 58.8 60.61931 60.0 62.11941 63.0 66.31951 66.4 70.91961 68.4 74.31971 69.4 76.51981 71.9 79.11991 74.6 81.01996 75.7 81.42001 77.1 82.2Source: Statistics Canada (2003)
LIFE EXPECTANCY Life expectancy at birth for children with Down syndrome:
Year LE (Years)1929 9 1947 12-151961 ~181990s >50
(Source: Haveman, 2004)
GROWING POPULATION There were an estimated 526,000 individuals
aged 60+ living with a developmental disability in the United States in 1998. This number is projected to double by 2030.
479,000 adults with DD were living at home with parents who were aged 60 or older.
(Heller and Factor, 1998)
AGING with DD An area of growing concern Focus of research in some of
the developed countries (e.g., Australia, Finland, U.S., England)
Very limited research in Canada
HEALTH DISPARITIES AND DD Physical health Mental health Social well-being
AGING with DD – Key IssuesPhysical Health Earlier development of some of the chronic
conditions or diseases (dementia, arthritis); More severe degrees of sensory
impairment; More severe loss of flexibility in joint
function Lack of basic knowledge about healthy
lifestyle behaviors; Receive less preventive health measures
(e.g., pap smears and mammograms)
AGING with DD – Key IssuesMental Health 30-60% of older persons with moderate
to severe DD have a mental disorder. Challenge: differentiation between
dementia, depression and behavioral conditions related to developmental disability. Why?
Seniors will DD will have difficulty in expressing their psychological problems.
Care providers’ lack of expertise
AGING with DD – Key IssuesSocial Well-being De-institutionalization & community living
Challenge: Aging parents/siblings providing care to an aging family member with DD.
Support services for caregivers Caregivers’ access to information Community participation & leisure
opportunities Good substitute decision maker Abuse/Neglect
AGING with DD – Key IssuesLiving Arrangements
There is no data on living arrangements of Canadian seniors with DDs.
“Group Homes” are the most frequent type of residential services provided by the community-based agencies across Canada (Pedler et al., 2000).
Canada's Seniors At A Glance
Canadian Council on Social Development for the Division of
Aging and Seniors, Public Health Agency of Canada (2005)
Seniors in Canada: 2006 Report Card
Seniors on the Margins
CURRENT GAPS IN KNOWLEDGE
Older Canadians with DD: Who they are Where they live The kind of supports and services they
have access to Unmet health care needs Unmet needs for social support
services (e.g., housing, recreation, social participation and transportation)
PROPOSED STUDY
Aging with A Developmental
Disability Unmet Health Care and Social
Services Needs
Shahin Shooshtari, Ph.D.
STUDY OBJECTIVES
1) To create a demographic, socio-economic and health-related profile of older Canadian adults (45+) who live with a developmental disability (DD) in the community;
2) To enhance the current knowledge of their unmet health and social support services needs.
RESEARCH METHODS Study Design: Analysis of cross-sectional data Data Sources: 2001 and 2006 PALS adult surveys. Target Population: Individuals aged 15+ living in
private households and some non-institutional collective households, who answered “yes” to at least one of the two disability questions on 2001 or 2006 Census.
Study Samples: The study sample will be restricted to respondents who: (1) were at least 45 years old at the time of their survey interview, and (2) reported having a developmental disability.
STUDY MEASURES
Developmental disability
“Has a doctor, psychologist or other health professional ever said that you (…) had a developmental disability or disorder? These include, for example, Down syndrome, autism, Asperger syndrome, mental impairment due to a lack of oxygen at birth, etc.”
Demographic Characteristics
Age Sex Place of residence Living arrangements
Socio-economic Characteristics
Highest Level of Education Personal Income level Household Income Level Main Sources of Income
Health-related Characteristics
Overall Health Status Level of Functioning Smoking Behaviour Drinking behaviour
Social Participation
Frequency of participation in leisure and recreational activities within home
Frequency of social activities outside home
Barriers to doing more leisure activities
Health Care Utilization Frequency of contacts with a
physician Frequency of contacts with a
psychologist, social work or counselor
Health Care and Social Support Needs Help with everyday activities Unmet health or social needs Type of unmet health care or
social support needs Reasons for not receiving the
help, which was needed
Health Care and Social Support Needs Help with everyday activities Unmet health or social needs Type of unmet health care or social support needs Reasons for not receiving the help, which was needed
Health Care and Social Support Needs Help with everyday activities Unmet health or social needs Type of unmet health care or social support needs Reasons for not receiving the help, which was needed
Caregiver characteristic(2006 PALS)
Age Sex Paid or unpaid work Relationship
TIMELINE
To start data extraction and preparation in July of 2008
Data analysis to be completed by Dec. 2008
Development of a CIHR Grant application for submission in March of 2009.
SIGNIFICANCE Essential knowledge for those
across different government departments — including health, family services and housing, as well as community-based agencies and voluntary sectors — involved in policy development, planning and provision of services to population of older adults with DD.
SIGNIFICANCE Information on barriers to receiving
the care and support which was needed, but not received, suggests great opportunities to intervene to enhance the quality of life of this population.
ACKNOWLEDGMENT
Centre On Aging University of Manitoba
Eric Langlet & Susan Stobert Statistics Canada
THANK YOU
St. Amant Community Residential Program
Continuum of services provided to over 150 children and adults across Manitoba (ages 5-75) 24 hr. residential supports Foster and respite care Transitional supports Supported Independent Living
One of over 100 service providers/agencies within Manitoba
Challenges for Service Provision – The Complex becomes Complicated!
Jurisdictional issues Access to Clinical/Medical
Supports Training/Caregiver Competency Generic Services vs. Special
Needs Home Care Rehabilitation Services (Stroke) PCH admissions Palliative supports