Submission to the Department of Health and Childrennda.ie/Image-Library/PDF-Downloads/MS-Word-Format...

Submission to the Department of Health and Children

Strategic Review of Disability Services

30 September 2005

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Part 1: Introduction..............................................................................................................4

NDA statutory remit..........................................................................................................4

Health inequalities............................................................................................................5

Scope............................................................................................................................... 6

Models of disability...........................................................................................................6

Principles and values........................................................................................................7

Part 2: Overarching Issues..................................................................................................9

Life course approach........................................................................................................9

Mainstreaming and Specialist Services..........................................................................11

Integration and Co-ordination.........................................................................................13

Participation and consultation.........................................................................................15

Disability and equality proofing.......................................................................................17

Data Collection...............................................................................................................18

Research agenda...........................................................................................................25

Standards.......................................................................................................................27

Accessibility....................................................................................................................28

Advocacy........................................................................................................................29

Challenging and influencing attitudes in Irish society.....................................................31

Part 3: Organisation and Delivery of Services...................................................................32

Stakeholders...................................................................................................................32

Community based provision...........................................................................................40

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Independent needs assessment.....................................................................................41

Person-Centred Planning...............................................................................................42

Information......................................................................................................................44

Protecting vulnerable adults...........................................................................................44

Pharmacy.......................................................................................................................45

Evaluation, monitoring and review..................................................................................47

Part 4: Funding and Resource Allocation..........................................................................48

Principles that should inform funding of services............................................................50

Part 5: Conclusion.............................................................................................................51

Appendices........................................................................................................................52

I References..............................................................................................................52

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Part 1: Introduction The National Disability Authority (NDA) welcomes this opportunity to present

this submission on the Department of Health and Children’s Strategic Review

of Disability Services. The NDA notes that the Strategic Review is fulfilment of

a Government commitment under social partnership.

The NDA considers that the review is timely in the context of the publication of

the National Disability Strategy (2004), the enactment of the Disability Act

2005, the Department’s preparation of its sectoral plan, and the anticipated

consideration of the Comhairle (Amendment) Bill 2004 during the next

parliamentary session. The multi-annual investment package component of

the NDS will have significant impact on implementation of recommendations

by the Strategic Review

The NDA notes that the Expert Group on Mental Health Policy will report

before year end. It considers it essential that these two significant policy

developments effecting the lives of people with disabilities are considered in

an integrated and co-ordinated manner by the Department in terms of future

policy work within the Department, statutory agencies under its aegis and

funded non-statutory organisations.

NDA statutory remit The National Disability Authority was established in June 2000 as an

independent statutory body operating under the aegis of the Department of

Justice, Equality and Law Reform. The National Disability Authority Act, 1999,

defines the principal function of the Authority as “to advise the Minister and

keep him or her informed of developments in relation to any disability of

persons which concern issues of policy and practice”. It has statutory remits in

the areas of policy, research and standards under the National Disability

Authority Act 1999 and additional functions under the Disability Act 2005.

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The Mission of the NDA is, on behalf of the State, to promote and help secure

the rights of people with disabilities. The Authority aims to achieve this by:

influencing public policy and legislation

ensuring that services to people with disabilities are of the highest

standards and quality.

In this introduction the NDA firstly considers the significance of health within

the lives of people with disabilities and barriers, which they experience in

accessing health care and fulfilling their full health potential. It goes on to

briefly explore the social and human rights model of disability and the

principles and values , which underpin its work and which it considers could

inform the Strategic Review.

Health inequalities Health is of central importance to the lives of people with disabilities. The

health and well-being of people with disabilities is intricately linked to their

ability to participate fully in the economic, social and cultural life of the nation.

The NDA’s publication on health inequalities in access and using mainstream

health services1 highlights the substantial and wide-ranging health impacts of

disability. These include (i) greater risk as a consequence of having a reduced

income due to exclusion from the labour force and being caught in the

‘benefits trap’, (ii) the additional costs of being disabled, (iii) increased

incidence of other disabling conditions and illnesses, (iv) lack of access to

acute, rehabilitative and population health services, (v) experience of a range

of barriers to accessing care (financial, physical, organisational, transport,

communication, informational including the inadequate knowledge of health

care providers and attitudinal), (vi) experience of un-coordinated and

fragmented provision, exacerbated by the involvement of multiple health and

1 The experiences of people with disabilities in accessing health services in Ireland: Do inequalities exist? (2005)

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social providers and (vii) limited provision due to the focus of health services

being on the individual’s impairment rather than the health issue or condition.

Scope The Strategic Review is taking place on foot of a commitment in Sustaining

Progress: Social Partnership Agreement 2003-2005.

2.6.2 Care of People with Disabilities

The Department of Health and Children will carry out a strategic

review of existing service provision, in consultation with relevant

interests, with a view to enhancing health and personal social

services to meet the needs of people with disabilities.

With regard to the scope of the population considered in the Strategic Review,

the NDA notes that - despite the inclusion of people with experience of mental

health difficulties within the broader population group of people with

disabilities since the Report of the Commission on the Status of People with

Disabilities (1996) - the commitment in Sustaining Progress has been

interpreted by the Department of Health and Children to focus on people with

physical, sensory and intellectual disabilities.

With regard to the scope of provision, the NDA considers that it is vital that the

Strategic Review considers the interface between provision of all health and

personal social services to people with disabilities. This raises a range of

issues from procurement, estate management, funding processes and

population health, primary, secondary and tertiary provision.

Models of disability In line with Government policy, the NDA uses a social and human rights

model of disability, which recognises how social organisation creates

disabling conditions that result in social, economic, political and cultural

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exclusion. This is in keeping with the definition of disability in the National

Disability Authority Act, 1999. In the Act disability “…means a substantial

restriction in the capacity of a person to participate in the economic, social or

cultural life on account of an enduring physical, sensory, learning, mental

health or emotional impairment”.

The social model of disability locates disability within society and how society

functions and adapts to disability. The aim of the social model is to create a

society that recognises diversity and works towards inclusion and equality for

all.

Principles and valuesThe NDA is dedicated to work towards the creation of a society in which

people with disabilities have the right and opportunity to

influence and shape policy at all levels

develop and fully use their abilities, talents and skills

live learn and work in environments appropriate to their needs

live as independently as possible

enjoy equality and participation

make informed choices on issues

participate in and receive support from, national and international

organisations that effectively represent their interests

have systems of support sufficient to ensure a reasonable standard of

living in the community of their choice.

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The NDA advocates for the development of policy that is grounded in these

principles and values.

Related to these principles and values is the promotion of policy, systems and

provisions that promote self-determination2 of people with disability. Self-

determination refers to the right of individuals to have full power over their

own lives, regardless of illness or disability. It includes concepts such as free

will, civil and human rights, freedom of choice, independence, personal

agency, self-direction, and individual responsibility. Self-determination in the

context of disability services refers to individuals’ rights to direct their own

services, to make the decisions concerning their health and well-being (with

help from others of their choice, if desired) and to have meaningful leadership

roles in the design, delivery, and evaluation of services and supports.

Self-determination operates at three, interrelated levels: Individual Self-

Determination; Services, Support, and Policies that Foster Self-Determination;

and Collective, Social, or Shared Self-Determination.

In the following Parts of the submission the NDA:

identifies what it considers to be core over arching issues for the

Strategic Review

comments on the organisation and delivery of services

considers funding and resources allocation.

2 The text on self-determination draws on Self-Determination Framework for Mental Health, UIC National Research & Training Center on Psychiatric Disability (2002)

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Part 2: Overarching Issues

Life course approach Persons may be born with or acquire impairments. At different life stages they

experience differing disabling effects of society. Also, they have different

service needs and preferences. The value of early intervention at whatever

life stage an impairment occurs is well established. The NDA notes that it has

developed a number of age-specific initiatives, which could support the

development of a life course approach3 to service provision.

The NDA promotes a life course approach to provision. The life course

approach acknowledges that ageing is a process, not an event. It

accommodates the effects of ageing in individuals. It does not apply arbitrary

age cut-off points for services, but provides services appropriate to the

individual’s needs. The life course approach requires that the mode of

service provision reflects people’s age-related cultural needs.

Children and adolescents

Inclusion of the specific health needs of children and young people with

disabilities is a key element in the development of a Strategic Review of

disability services. The National Children’s Strategy (2000) calls on the

statutory agencies, the non-statutory sector and local communities to work

together to improve the quality of all children’s lives. The principles identified

to guide all actions under the Strategy are that actions be child centred, family

oriented, equitable, inclusive, action oriented and integrated.

3 Encouraging Voices: respecting the insights of young people who have been marginalized (2003); Research with children with disabilities (2005); Ageing and Disability Project with National Council for Ageing and Older People (2004 - )

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Older people

Disability affects people of all ages and increases with age. More than one-

third of people over 65 have a disability (CSO 2002). More importantly, as

people age, they are more likely to experience more than one type of

impairment. About two-thirds of disabled people aged over 65 years

experience more than one kind of disability or restriction, with the incidence of

multiple restrictions rising with age. Such statistics are initial indicators of an

emerging situation in Ireland. For example, it is projected that the prevalence

of dementia will double in the next 16 years.

Such a situation challenges the current divisions between older people’s and

disability services. For people who develop early-onset dementia, the fact

that dementia services are organised only for those over 65 means that the

services do not meet their needs. For older people, the fact that old-age

depression is not adequately recognised means their mental health needs are

not addressed. For older people who develop sensory and physical

impairments, the fact that rehabilitation is focussed on re-entry into the

workforce means that they may not receive the appropriate rehabilitation that

could enable them to continue to participate in society.

Recommendations

The NDA recommends that disability services re-orient from age-restricted,

single-impairment client groups, gate-kept by chronological age to a holistic,

life course approach to provision, supporting access to integrated, co-

ordinated services for people with disabilities throughout their life course.

The NDA recommends the development of a ‘passport’ for people with

disabilities to assist their movement through and between health services, and

also services in other sectors e.g. education, housing, social welfare,

employment and transport.

The NDA recommends the development of life course service planning, based

on independent needs assessment that delivers appropriate and adequate

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early intervention and anticipates service needs and supports integrated and

co-ordinated to ensure transition between provision at key life stages.

The NDA recommends the development of age appropriate provision e.g. day

service and residential placement, noting the specific issues for children and

young people and persons with disabilities aged 65 years and over.

The NDA recommends that the Strategic Review supports the re-orientation

of mainstream age-specific provision to ensure that, as much as possible,

people with disabilities can access the same provision as their peers, with

necessary supports.

The NDA recommends the development of a research programme that

identifies policy and service provision issues for people with disabilities over

the life course and at key transition stages e.g. under-5s provision, primary,

secondary and further education level education, entry into employment, post-

65 years.

Mainstreaming and Specialist Services

Mainstreaming is a key tenet of Government policy towards people with

disabilities. The Commission on the Status of People with Disabilities

emphasised equality of opportunity so that “people with disabilities can

participate in education, employment, and all other walks of life on an equal

basis.”4 In implementing mainstreaming within an equality framework, it was

intended that all Government departments and agencies would provide

services to people with disabilities “as part of their core work.”5 The policy of

mainstreaming was affirmed by the Taoiseach in his speech launching the

NDS when he said that equal participation of people with disabilities should be

4 Commission on the Status of People with Disabilities (1996) A Strategy for Equality: Report of the Commission on the Status of People with Disabilities, Stationery Office, Dublin, p.12.5 Speech by the Taoiseach, Mr. Bertie Ahern, T.D. at the Launch of National Disability Authority, Comhairle and the Mainstreaming of Services for People with Disabilities, O’Reilly Hall, UCD, 12th June 2000.

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underpinned by “integration in the mainstream wherever possible, and

minimum segregation where necessary.”

Mainstreaming is underpinned in Section 26 of the Disability Act 2005, which

provides that where a service is provided by a public body, the provision of

access to the service by people with and without disabilities be integrated

where practicable and appropriate. The inclusion of the term ‘appropriate’

reflects an understanding that in certain situations, the individual’s needs may

be best met within a segregated setting. However, the Government’s

statement about the NDS, of which the Act forms a part, makes clear that

such situations are to be kept to a minimum, and that the emphasis should be

given to integrated provision wherever possible.

Such a policy places additional demands on mainstream services. In the

health sector mainstream services would include general health provision

such as primary care, general hospitals, public health screening programmes

and the services of health promotion departments. These demands can be

managed by three key processes:

1) Disability/Equality Proofing in all mainstream services, including

assessment criteria, to identify gaps and establish disabled access;

2) Creative co-ordination between mainstream and specialist services

to ensure effective access through mainstream settings.

3) The development of specific, measurable targets and accurate

costings for mainstreaming.

Further, mainstreaming of non-health services from the Department, statutory

agencies under its aegis and non-statutory agencies, which it funds, is a

vehicle for focussing the health system on its core business of health

provision that promotes and protects the health and well being of people with

disabilities, responds to all their health needs (not only those that are

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impairment related) in an appropriate and timely manner and improves their

health status.

In its report Requirements for a System of Independent Needs Assessment in

Ireland [2003], the NDA reviewed the current structure of provision and

identified provision, which could be mainstreamed from health to the lead

government department and its agencies. Such provision included

accommodation (Responsible Department: Environment, Heritage and Local

Government), income (Responsible Department: Social and Family Affairs),

training and employment (Responsible Department: Enterprise, Trade and

Employment), transport (Responsible Department: Transport).

Recommendations

The NDA recommends that the Strategic Review promotes the realisation of

mainstreaming through specific actions, including:

Actions to mainstream from disability services and health services in

general non-health provision including accommodation, income,

training and employment and transport

Actions to mainstream from disability services health care that could be

provided through general health care.

Protocols to manage the interface between specialist and mainstream

health provision.

Support initiatives by mainstream health services to develop disability /

equality proofing mechanisms and improve access.

Integration and Co-ordination

People with disabilities and their significant others have identified difficulties in

the realisation of policy commitments to deliver integrated and co-ordinated

services. These issues include poor communication between services and

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delegation of communication and care management to people with disabilities

or their significant others, persons ‘falling between’ different Departments and

service providers, poor transition planning when people move between

services at chronological and developmental milestones, the territorialism of

service providers and failures to draw on expertise elsewhere in the health

system.

People with disabilities cannot be integrated into mainstream services and

continue to access specialist services as required without effective integration

and coordination between policy makers and service providers. The Disability

Act 2005 requires co-ordination between the Department of Health and the

Departments of Education, Social and Family Affairs, Environment, Heritage

and Local Government, and Enterprise, Trade and Employment on the

provision of services to people with disabilities. The Government has stated

that disability should be on the agenda of every Government Department and

public body. This means that protocols and procedures should be put into

place to enable both integrated policymaking and coordinated service

provision by themselves and the agencies under their remit.

Without effective leadership, coordination either fails or becomes perfunctory.

This is born out by international experience showing that effective disability

policy requires designated leadership at a high level (Pillinger 2005).

Recommendations

The NDA advocates the following key provisions for effective integration and

coordination:

Clear guidelines on coordination with other Government Departments

and with all agencies and bodies under the aegis of Departments to

address cross-cutting issues;

A clear description of the mechanisms to underpin this coordination at

different levels and how they inter-link;

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At service level, a leadership role by the HSE National Care Group

Manager; and

Regular reporting requirements by Departments and service providers

regarding the integration and coordination of health, education,

housing, transport, and social welfare provision.

Participation and consultation

The NDA is committed to consulting with persons with disabilities, their

advocates, service providers and the general public. It is essential that

consultation involving people with disabilities allows time for those consulted

to consider the issues fully. The NDA recognises that supports may be

required to ensure the equal participation of persons with disabilities. It has

developed the Ask Me guidelines on consultation and the Strategic

Partnership Guide.

People with disabilities are the experts on their own experience. The social

and human rights model of disability entails greater involvement of people

with disabilities in the decisions, which affect them. The right of people with

disabilities to influence the decisions, which impact upon them was also a key

principle of the Report of the Commission on the Status of People with

Disabilities.

Influence can come in three main forms: consultation, partnership and

participation. Consultation involves seeking a diversity of views to inform the

process of decision-making. Partnership extends beyond consultation, to

create an on-going relationship where stakeholders work together towards a

common goal. Full participation requires democratic processes that enable all

people with disabilities to have a voice in decision-making. Participation also

implies ongoing, regular engagement. In effective participatory processes,

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participants are enabled to set the agenda of issues to be considered, as well

as to contribute their views. This means that participation enables the

expansion of the agenda to consider wider issues beyond service quality.

Since the consequences of being disabled are cross-cutting issues such as

poverty, social exclusion and political disenfranchisement, it is important for

people with disabilities to have forums within which wider issues can be

addressed.

Service user involvement has been implemented in some disability services in

various ways, however what is now needed is a national policy on the

participation of people with disabilities and nationally-agreed protocols for

such involvement. The remit of a national participation structure should be

distinguished from the pre-existing Consultative and Co-ordinating

Committees, both of which have been balanced in favour of service provider

organisations rather than service user representative organisations. The

national participation structures should have regional and local strands and

should be implemented according to the following guidelines:

Recommendations

The NDA recommends

Implementing the Government’s Reaching Out and the NDA’s Ask Me guidelines for all consultation processes;

Establishing ongoing participation structures such as regular, local and

regional open forums, and democratically-selected representative

committees, from which representatives to decision-making bodies can

be drawn;

Investing in capacity-building of people with disabilities and their

representative organisations through designated funding;

Creating protocols to ensure that participation occurs throughout the

policy development, implementation, monitoring and evaluation stages;

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Incorporating equality and diversity dimensions into participation

processes by ensuring adequate representation across social groups

of gender, class, age, ethnicity, disability, sexual orientation, and

membership of the Traveller Community;

Creating transparent and accessible communication mechanisms; and

Creating review mechanisms to evaluate and improve participation

processes.

Disability and equality proofing

Disability / equality proofing is a systematic process for ensuring the potential

of legislation, policies and provision to promote equality is maximised and

their potential to undermine equality is minimised. Through a process of

awareness raising, audit, consultation and impact assessment6, policy makers

and service providers can identify, analyse and address positive and negative

impacts of initiatives Supporting mechanisms for realising equality competent

organisations are developed and evolving. These include equality review and

proofing templates, guidance and training, and examples of good practice

emerging. Leadership is being provided through a number of independent

statutory organisations such as the National Disability Authority and the

Equality Authority.

The NDA notes that it has undertaken a number of initiatives that would

inform the work of the Department on the needs of persons with disabilities

who are also members of communities covered by the Equality Acts 1998-

2005 including those referenced in the section on the life course approach, a

current initiative on women and disability, Disability and Sexual Orientation: a

discussion paper (2005).

Recommendations

The NDA recommends

6 NDA Disability Proofing Template for Local Government Barcelona Declaration Project 2001-2004

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The comprehensive introduction of disability / equality proofing in disability

services and across the health system.

The integration of disability / equality proofing with other proofing and impact

assessment measures in the health sector.

The progressive implementation and adequate resourcing of actions plans

issuing from disability/ equality proofing exercises, within set timeframes and

with monitoring and review mechanisms.

The equality proofing of the Strategic Review for its consideration of and

potential impacts on persons with disability under the nine grounds of the

Equality Acts 1998-2004 i.e. gender, marital status, age, disability, race,

sexual orientation, religious belief, and membership of the Traveller

community

The Department and agencies under its aegis collaborate with organisations,

which represent and work with communities covered by the nine equality

groups in the development of the Strategic Review and the implementation of

its recommendations as well as the ongoing development of disability policy

and provision

Data Collection

Demographics

Information on disability in Ireland is available through national surveys and

service usage statistics. Analysis of Irish data shows the strong association

between disability and age, with people over the age of 65 much more likely

to develop a disability than those in younger age groups. Table 1 shows the

breakdown of the disabled population in the state by age and gender, as

recorded in the most recent Census in 2002. The 136,000 people who are

aged over 65 years represent 44.3% of the total disabled population in

Ireland, with more women over the age of 65 experiencing disability than men

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unlike trends in younger age groups. This is partly accounted for by the longer

life expectancy of women.

Table 1: Numbers of disabled people, by age group and genderCensus 2002, rounded

Age M F

0-19 16,000 10,000

20-64 84,000 78,000

65+ 52,000 84,000

Total 152,000 172,000

The link between disability and ageing also reflects the fact that most disability

is acquired. The Quarterly National Household Survey (QNHS) included a

special disability module in 2002 that contained a specific question on the

length of time the ‘longstanding health problem or disability’ had existed. Of

the 271,000 persons between the ages of 15 and 64 that were recorded as

disabled on the basis of the questions used in this survey, 40,500 people or

14.9% stated that they had had the disability since birth. As persons over the

age of 65 were not included in the study, the true figure of acquired disabilities

among the entire population is likely to be much higher than the 85.1%

indicated in the above data.

Disability data is also available from two national disability databases

maintained by the Health Research Board. These are the National Intellectual

Disability Database (NIDD) and the National Physical and Sensory Disability

Database (NPSDD). Both provide a profile of people with the specific

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categories of disability who are receiving specialised health and personal

social services or who are waiting for these services and are used as planning

tools. The NIDD had over 25,000 registrations in 2004. Table 2 shows the

breakdown of all registered users by age and gender. Of all registered

persons on the NIDD, 34.2% are under 19, 55.4% are between the ages of 20

and 55 and 10.5% are over 55 years of age.

Table 2: Number of registrations on NIDD, by age group and gender

Age M F

0-19 5,325 3,355

20-54 7,660 6,403

55+ 1,261 1,412

Total 14,246 11,170

There are currently just over 20,000 people registered on the NPSDD. Thirty

three per cent of all registrations are below the age of 18, 54.8% of people are

between the ages of 18 and 59 years and 12.6% are between the ages of 60

and 65 (National Physical and Sensory Disability Database Committee, 2004).

The number of registered females is greater than males in all categories with

the exception among registered service users under the age of 25. However,

its main limitation is that data is only collected for service users who began

their usage before the age of 66, therefore limiting its capacity to provide us

with data on the service usage of older people with physical impairments.

Analysis of data on specific health conditions and impairments also confirms

the strong association between disability and ageing. Prevalence of

cardiovascular disease, cancer, diabetes and other diseases increases

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significantly with age. By 2020, heart disease and stroke will become the

leading cause of death and disability worldwide (Atlas of Heart Disease and

Strike, WHO, 2004). Irish prevalence data for cardiovascular conditions is

limited to hospitalisation rates for public hospitals recorded in the Hospital In-

Patient Enquiry (HIPE) Database. Nevertheless, it shows that approximately

25% of all male hospitalisations and 7.5% of all female hospitalisations among

those between the ages of 55 and 59 years are as a result of either ischaemic

heart disease (ISD) or acute myocardial infraction (AMI), two of the most

common cardiovascular conditions. However, among those in the 65-69 and

70-74 age groups, the rate of all hospitalisations in these categories

accounted for by both conditions increased to approximately 33.5% and

34.5% respectively for men and 16% and 18% for women (Irish Heart

Foundation, 2001).

Although significant declines in mortality rates have occurred in recent

decades, increased numbers of people are forced to cope with the daily

realities associated with the condition, most of them elderly. The disability that

is caused by CVD indicates a substantial number of older people who are

likely to require continued monitoring and treatment after experience of

serious conditions such as heart and stroke.

It is estimated that the population aged over 65 could also increase from its

present level of 436,000 to about 1 million in the next thirty years. The

population aged eighty years and over is projected to increase three-fold in

the same period, to over 300,000 (Punch 2005). When considered in

conjunction with the disability data noted above, these demographic changes

will have important implications for the provision of disability services in

Ireland in the future.

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Service: operational and clinical

The development of an independent needs assessment system poses certain

challenges for the current database infrastructure held within the Health

Research Board. While the independent needs assessment process outlined

within the Disability Act 2005 will provide INA for those who fall within the

definition of disability contained within the Act, the national databases provide

an infrastructure for planning for the service needs for the broad range of

people with disabilities in Ireland.

The National Intellectual Disability Database has been a key planning tool for

the development of services for those with intellectual disabilities in Ireland.

While participation in the National Physical and Sensory Disability Database

has been uneven nationally, the strong uptake in certain health service areas

suggests that it too can be a useful tool in planning and targeting services

more effectively. However, while both tools have their distinct strengths,

neither tool would, as currently implemented, satisfy the requirements of a

statutory needs assessment as described in the Disability Act 2005. The

NPSDD is largely a self assessment, reported to trained personnel. The

NIDD while a clinical assessment, does not currently satisfy the definition of

independent. It will be critical to develop a system, which is coherent with the

provisions of the Disability Act, even if that means ceasing to operate either or

both of the current databases in lieu of a more robust system.

Contact with the databases differs between population groups; contact with

the NIDD is often the result of referral from maternity hospital, G.P. public

health nurse or other health professional. Contact with the NSPDD is often all

of those sources, but there are a greater number of those who are self

referred on the NSPDD than the NIDD. Owing to the nature and timeliness of

diagnosis, distinct referral pathways are to be expected; however, it is

important to ensure rigorous monitoring of assessment protocols to ensure

data obtained is of the highest quality. NDA is concerned that lack of

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resources in some health executive areas has resulted in a leniency on

adherence to protocol for the NSPDD in particular.

The databases are only effective as planning tools if the resources allocated

are aligned with need. NDA is concerned that significant investment in

services in the past five years has not resulted in the development of the

expected services; the absence of clear costings and standards for services is

at the heart of this discrepancy. While funds are allocated to cover such

services as residential places, day places and respite services, lack of

agreement between the funding body and the providing body as to the costs

of such services results in this disconnect and ultimate concern over

expenditure. Clear agreement as to the actual cost of such services and the

full description of what such costs are to provide for is necessary.

The national information systems are as follows:

National Intellectual Disability Database (established in 1995),

National Physical and Sensory Disability Database (commenced national

implementation in 2002),

The Occupational Guidance Service (Rehabilitative Training and Sheltered

Workshop Services) Database

There is no national database attempting to capture service provision needs

of those with mental health difficulties or for those over the age of 65 years.

However, the vast majority of disability is acquired in the years over 60 and

the World Health Organisation estimates that twenty five per cent of

populations in both developed and developing will experience depression or

other mental health or behavioural difficulties at some stage in their lives

(World Health Organisation, Mental and Neurological Conditions Factsheet,

2001). Furthermore, individuals do not fit easily in one category of need or

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another; the elderly, the young person with a physical impairment, and those

with intellectual disabilities can clearly experience mental health difficulties. A

comprehensive planning tool to anticipate and provide for this complex array

of needs is urgently required.

Classification System

In keeping with NDA’s contribution to the Information and Databases

Specialist Study Group, NDA sees disability as a multi-dimensional

phenomenon arising out of an interaction between the individual’s health

status and the physical and social environment. Disability data, and the

instruments to measure them, must reflect this bio-psychosocial model of

disability. Valid and reliable information are essential to design, implement, or

evaluate policies and legislation to combat discrimination, promote social

integration and participation, and enhance opportunities. The World Health

Organisation’s International Classification of Functioning, Disability and Health

(ICF) provides the framework for documenting the interaction between health

status and environmental features, and the differential distribution of disability

among different groups in different contexts.

ICF has been endorsed by 191 countries, including all European Member

states, as the internationally accepted framework that should govern data

collection efforts with regard to disability and health. It is a member of the

WHO family of international classifications, including in particular the

International Statistical Classification of Diseases and Related Health

Problems (ICD-10). These classifications are the principal source of

international standards for health and disability. In this role, ICF itself

constitutes an international standard of significant importance both to disability

policy experts and governmental agencies, and to persons with disabilities

themselves.

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Recommendation

NDA endorses the recommendation of the Information and Databases

Specialist Study Group which states:

All future development of data gathering/survey instruments should be firmly

grounded in the World Health Organisation’s International Classification of

Functioning, Disability and Health (ICF).

Research agenda

Research Priorities

In line with our vision outlined earlier in this document, the NDA t is committed

to research from a social model framework and to the fundamental principles

of participation and empowerment of people with disabilities in our research

programme. To this end, the NDA Research Unit has issued a number of

guidance documents.7 It is our aim to establish a national Disability Research

Ethics Advisory Committee to review disability research proposals and make

recommendations against the guidelines.

Current Research Activities in NDA of Relevance to the Strategic Review

National Disability Study

In October 2004 the government announced its approval for the

implementation of the first ever National Disability Survey to be conducted by

the Central Statistics Office following the Census of 2006. The purpose of the

national disability study is to establish a comprehensive estimate of the

prevalence of disability in Ireland, to gather and analyse both appropriate

statistics and qualitative data and to present a comprehensive picture of

disabled people’s experience of participation in, or exclusion from, all aspects

of Irish life. We recommend that both adults and children with disabilities be

included.

7 Guidelines for the Inclusion of People with Disabilities in Research (2002), Guidelines on Research with Children with Disabilities, Ethical Guidelines for Disability Research (NDA, 2004).

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The NDA believes that the findings of this study will assist a wide range of

government departments and other agencies in the planning and

development of relevant policies and of specialised and mainstream services

for people with disabilities.

It has been agreed that the framework to be used in the National Disability

Survey will be the WHO International Classification of Health and Functioning

discussed earlier. The NDA is working closely with the Central Statistics

Office in the development of the survey questionnaire.

Other recent/current relevant research initiatives include

Recently published research into inequalities in access to mainstream

health services and identifying mechanisms to facilitate access to care;

Recently published research entitled ‘Disability and Social Inclusion’

jointly commissioned with the Equality Authority

Soon to be published national study of the levels of and barriers to

physical activity and sport among people with disabilities in Ireland

Promotion of Applied Research on Disability and Health partnership

with HRB

Ongoing study into the experience of abuse of people with disabilities

Current review of literature on women and disability

Future NDA research priorities in the health field include:

Research to understand better the relationship between health inequalities

and disability: what works to reduce inequalities between the disabled and

non-disabled population;

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Research into health promotion priorities for people with disabilities in Ireland

and the effectiveness of current health promotion interventions;

Research into quality of life indicators for people with disabilities in order to

monitor effectiveness of services and other interventions, and identify

appropriate policy responses;

Research to identify effective population-level interventions for preventing

mental health problems. Related to this is our priority for research into the

relationship between social capital, health and mental health well being;

Research to identify interventions to improve the quality of interventions,

particularly at primary care level, incorporating an understanding of social

exclusion on service user needs and care delivery;

Research into the cost effectiveness of interventions provided across the

whole service system, from specialist services to community based

mainstream and home support interventions;

Research into effective strategies for supporting carers in their roles and

promoting the mental well being of carers;

Research into appropriate strategies/interventions to identify mental health

problems in people with learning difficulties, the risk/protective factors, and

management there of in the community at residential care level;

Standards

In June 2002 the NDA formally proposed the development of National

Standards for Disability Services to the Department of Health and Children.

Since then, the NDA and the Department have actively worked in partnership

on this project which eventually resulted in the NDA forwarding the standards

for approval by the Minister of Health and Children in October 2004. In the

current Social Partnership Agreement 2003-2005 ‘Sustaining Progress’, the

Government expressed its commitment to complete the development of these

standards.

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Undoubtedly the Department is aware that the non capital expenditure on

health related services developed specifically to meet the needs of people

with different types of disability (excluding mental health services) is now over

€1.2 billion per annum (Department of Finance, 2004). More than 25,000

people with an intellectual disability and 40,000 people with physical and

sensory disabilities avail of these services (Health Research Board, 2002 and

2004).

Recommendation

The NDA recommends that the National Standards for Disability Services are

implemented as soon as possible, in line with the recently published HSE

Service Plan which identifies 'compliance with the National Standards for

Disability Services' as one of the three key issues for disability services in

2005.

Accessibility

Access is crucial to the inclusion of people with disabilities. Accessibility

means all measures necessary to ensure people with disabilities can equally

participate in society, as well as enter and make use of a place, a good or a

service. The NDA view is informed by reference to the ISO TS 16071

definition of accessibility as ‘the usability of a product, service, environment or

facility by people with the widest range of capabilities’. This includes physical,

communication and information access.

Achieving the highest level of accessibility in the public service has been a

stated commitment of Government policy since the Programme for Prosperity

and Fairness Social Partnership Agreement (PPF). Under the PPF, the NDA

has been given the task to develop guidelines and to monitor progress in the

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achievement of improved accessible public services and to award an

accessibility symbol to compliant public services (the Excellence through

Accessibility Award Scheme).

Recommendations

The NDA recommends that the Department aims to achieve the highest level

of accessibility for itself as well as statutory agencies under its aegis by

participating in the Excellence through Accessibility Award Scheme.

The NDA recommends that the Department ensures full compliance with the

Disability Act including compliance with statutory codes of practice in the area

of accessibility and positive action measure for the employment of people with

disabilities.

Advocacy

The Irish Government has accepted the need for advocacy for and by people

with disabilities through the Comhairle Act 2000 and the inclusion of the

Comhairle (Amendment) Bill 2004 as part of its NDS. The NDA stresses the

importance of legislative, policy and service measures to ensure effective

access to advocacy by all people with disabilities.

The NDA believes that advocacy work should aspire to empower all

individuals and groups to advocate on their own behalf, whilst also ensuring

that people can choose their preferred type of advocacy provision. This

requires investment to effectively resource advocacy provision.

The NDA notes that there are a range of types of advocacy:

legal advocacy – representation by legally qualified advocates, usually

solicitors, on behalf of people with disabilities;

independent patient advocacy – provided by an independent,

professional advocacy service;

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citizen advocacy – a long-term one-to-one partnership between a

service user and an advocate. (This model has developed in response

to the needs of people with intellectual disabilities);

Peer advocacy – provided by people who have themselves been, or

from time-to-time are themselves, users of the service;

Self-advocacy – people speaking out for themselves.

Recommendations

Drawing on research by Comhairle (2003), the NDA recommends the

following guidelines for implementation:

Guaranteed statutory funding: funding should be provided on a

contractual, partnership basis with specified protection for the

autonomy of the service from the funder and/or service provider

agency.

Independence – the advocate must be visibly and substantially

independent from the service. This means that the independent

advocacy service should be established as an entity independent of

any government department and the service in which he or she is

working.

Choice in advocacy services - the individual should be able to choose

whether or not to avail of advocacy. The individual should also be able

to choose between a range of types of advocacy as described above,

advocacy providers, and individual advocates. This will require

substantial investment. However, without such choice, there is a risk

that the individual’s rights will not be effectively represented. Lack of

choice could also result in the abuse of people with disabilities by

advocates.

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Standardised, accredited training should be required for all people

acting as advocates. This training should include not only the

principles of good practice in advocacy, but also Disability/Equality

awareness training.

The performance of advocates and their parent organisations should

operate within a national regulatory framework and be monitored

against agreed standards.

All staff providing services to people with disabilities should be trained

to create a positive environment for advocacy, to facilitate access to

advocacy by people with disabilities, and to work in partnership with

people with disabilities and their advocates.

Users should at all times have access to an effective complaints

mechanism regarding advocacy services.

The NDA also recognises that advocacy services should be available to

support carers and family members.

Challenging and influencing attitudes in Irish society

The Commission on the Status of People with Disabilities identified cultural

images portrayed for example in the media and the presence or absence of

education about a particular group aimed at combating prejudicial and

discriminatory attitudes as two principle determinants of the status of people

with disabilities. NDA has prioritised work on attitudes by stating that one of its

strategic priorities is the informing and influencing of attitudes in Irish society.

In 2002 the NDA published a baseline survey on attitudes towards people with

disabilities. The summary findings provided data on public attitudes regarding

what constitutes disability, perceived prevalence of disability in Ireland,

fairness of treatment of people with disabilities, participation of people with

disabilities in education and employment definition of disability, difficulties

experienced by people with disabilities, their rights and fulfillment with regard

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to relationships and sexuality and children, people without disabilities’ comfort

with people with disabilities, caring and state benefits. Subsequent research

on public attitudes towards people with disabilities provides further useful

evidence. The NDA notes that it is developing Guidelines for Purchasers of

Disability Equality Training.

Recommendations

The NDA recommends that the Strategic review addresses the issue of

attitudes towards people with disabilities by:

Promoting comprehensive and ongoing disability / equality awareness

training for all staff within the Department of Health and Children and

statutory agencies under its aegis

Recommending the development of nationally co-ordinated, inter-

sectoral initiatives to promote positive attitudes towards people with

disabilities amongst the public.

Part 3: Organisation and Delivery of Services

Stakeholders

The NDA acknowledges the multiplicity and diversity of stakeholders in

disability services, which may expand as community based and mainstream

provision is developed. As outlined above the NDA advocates for consultation

with, participation of and partnership with all stakeholders.

The NDA notes the the World Health Organisation’s Health 21 – health for all

in the 21st century includes Target 20 – Mobilizing partners for health:

By the year 2005, implementation of policies for health for all

should engage individuals, groups and organizations throughout

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the public and private sectors, and civil society, in alliances and

partnerships for health.

In particular:

20.1 the health sector should engage in active promotion and

advocacy for health, encouraging other sectors to join in multi-

sectoral activities and share goals and resources;

20.2 structures and processes should exist at international,

country, regional and local levels to facilitate harmonized

collaboration of all actors and sectors in health development.

[1999:200]

In this submission, the NDA considers the following stakeholders:

people with disabilities

significant others (families, friends and carers)

workers

community.

People with disabilities

A key aspect of service quality is the enhanced role given to service users,

through participation in the planning and monitoring of services and the

development of empowerment and independence as guiding principles in

service delivery. There are welcome changes in the area of user involvement

and participation with the

Growing representation of service users on decision-making bodies

Involvement of service users in the planning, organisation, delivery and

monitoring of services and

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Development of peer provided services.

This submission primarily addresses the Strategic Review regarding the

experiences of people with disabilities. Therefore, in this section greater

attention is given to other stakeholder groups.

Recommendation

The Strategic Review should be completed with the full inclusion of people

with disabilities and subsequent policy, provision and practice both as users of

services and contributors to strategic development. Their expertise should be

given equal value to other stakeholders and they should be supported to take

leadership in disability services.

Significant Others

A significant other is a person who has a supportive relationship with the

disabled person. This may include a family member, friend, community

member or someone in an informal caring relationship with the person.

Carers are key stakeholders in disability services, both at individual and

strategic levels. They are important sources of support for people with

disabilities. However they need to be adequately supported. The NDA

considers that the rights and contributions of carers are often not recognised

and the impact of caring upon their other familial and social relationships,

mental health and quality of life as well as income are not recognised.

Significant others have expressed their sense of not having a voice in

disability services and that their expressed views have little and rarely lasting

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impact. They have also details the negative personal impact of the caring role

and engagement with disability services. lack of personal and family time,

exhaustion, poor quality familial relationships, stress with current situations

and anxiety anticipating what may happen to the person with a disability when

they are no longer able to care, advocate, monitor. Negative impacts can be

caused by service orientations, specifically where significant others

experience services as a) blaming e.g. deficits in parenting, b) services

taking away control, c) services not valuing their expertise or recognising their

knowledge of innovative treatments, d) planning taking place without their

input.

Recommendations

The NDA recommends the development of a national strategy for carers of

people with disabilities.

The NDA recommends research on the impact of caring upon the family and

social relationships, mental health and quality of life to determine the needs of

carers.

The NDA recommends the development of respite care services, which are

appropriate and responsive to family needs.

The NDA recommends the development of services in a comprehensive

manner so that carers are not forced to assume an unsustainable level of

care.

The NDA recommends that significant others should

be consulted on the development and delivery of services, and through

such consultation additional support services should be identified and

developed

have access to information about disability, the services provided and

the relevant legislation

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have access to advocacy provision to assist them in having their voices

heard within disability services

have access to support services, including peer support, and

educational programmes.

have the benefit of a national Code of Practice to guide disability

services in their work with significant others, which would indicate good

practice from the first time of contact with services and would promote

transparency, negotiation, consent and mutual respect.

Have access to a carer key worker, as appropriate, who could provide

appropriate and accurate information, involve carers in the needs

assessment and care planning process and assist carers at key times

e.g. points of transition and in the process of discharge.

Further, the NDA considers that children and siblings of people with

disabilities may have specific issues that should be addressed in the Strategic

Review. Children of people with disabilities may be engaged in caring

activities that are inappropriate for their age and limit their opportunities to

fully experience childhood and adolescence. Their caring responsibilities may

include household and financial management, care of other siblings and

family members, self care, mediating relationships within and without the

family for example with neighbours and services, providing emotional support

and administering medication.

Similarly siblings of children and young people with disabilities may

experience of impacts including confusion about their brother or sister’s

impairment and service responses, lack of family time, financial hardship,

sense of taking second place, sense of responsibility and caring

requirements.

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Recommendations

The NDA recommends that family members with disabilities should be fully

supported in realizing their full potential as parents, siblings etc.

The NDA recommends that the experiences and needs of children of disability

service users and the siblings of children and young people with disabilities

should be addressed by the disability services, children’s and youth services,

through integrated action at national, regional and local levels. Support for

families in which one or more member is disabled must become an integral

component of a comprehensive family-centred approach to disability

provision. Such an approach would include

Co-ordinated and integrated needs assessment for the child(ren) and

the family, care planning and service delivery

Access to educational programmes for children

Communication between services and with the child(ren) concerned

Access to age-appropriate educational and social activities that support

a positive experience of childhood.

Appropriate support must be provided for these children so that they benefit

from the same life chances as other children.

Staff

Staff working in disability services and other affiliated community and support

services, including general health services, are instrumental in the quality of

services delivered on the ground. The experience of this group of

stakeholders should be harnessed in order to increase the level and quality of

service organisation and delivery to those who require it.

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The NDA welcomes the Department of Health and Children’s commitment to

make the health service an ‘employer of choice’. It recognizes the contribution

of health care workers of professional, administrative and ancillary grades to

the operation of disability services in situations which can be characterized by

inadequate resources, inadequate legislation and policy, lack of respect,

acknowledgement and value for work, limited or no supervision, poor co-

ordination, poor communication, limited opportunities for professional

development and career progression andlimited opportunities to input

strategically into the development of services at local, regional and national

levels.

Concerns raised with regard to staffing by persons with disabilities and their

significant others include low staff: client ratios, the lack of key workers, high

staff turnover and poor retention (which impacts on continuity of care), lack of

trained and experienced staff, lack of ongoing training of staff, and the lack of

certain professional staff e.g. speech and language specialists, social workers

and occupational therapists.

Whilst the NDA considers that much needs to change in disability services, it

also recognises that the contribution of personnel to the development of

innovative practice should be acknowledged and built upon. The NDA notes

the valuable contribution of persons with disabilities who are employed in

disability services.

Recommendation

The NDA recommends that the Strategic Review addresses the actions

required to make disability services the employer of choice for people with

disabilities.

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The NDA recommends that an audit of the range of workers working in

disability services is undertaken to collect data on total numbers in post

(permanent and temporary), number of vacancies, discipline and grade mix,

distribution of personnel by type of service and geographical location,

including data on the employment of people with disabilities .

The NDA recommends that the Department, HSE, NHO and HiQA develop a

work force strategy that will meet the changing needs and demands of the

disability sector.

Community

In line with the international best practice and human rights instruments,

services in Ireland have been reorienting from institutional to community

provision. The value of locating services close to where the person lives in

order to promote access to services, and continuity of familial and friendship

support as well as to facilitate the return of the person to their daily life is well

recognized.

Much of this service reorientation has been focused on the movement of

resources from the institution to the community, the transfer of personnel,

purchase of new buildings and establishment of community services.

However, the service reorientation has often occurred without systematic and

substantial engagement with local communities. As a consequence, many

people with disabilities have remained members of a disability service rather

than members of the community.

In order to ensure that people with disabilities are fully included in their

community, disability services should adopt a community development

approach to their work. Further, disability services should engage with

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mainstream services and community organizations that employ this approach

in order to access expertise and create synergy.

This would involve working with individuals and community organizations to

identify:

Disability issues and ways in which these could be addressed

barriers to the participation of persons with disabilities in their

community

ways of promoting the inclusion of people with disabilities as

contributing members of their community.

Recommendation

The NDA recommends that the Strategic Review promotes a community

development approach to service provision.

Community based provision

The NDA supports Government objectives and policies for people with

disabilities regarding the reorientation of disability services from hospital to

community provision. The NDA considers that service delivery should ensure

a continuum of integrated supports, interventions and treatments, including

systems to ensure successful transition between different service components

within and out with the health system. Providing a diverse range of service

options, and based on the principle of choice, flexible community based

provision should be available when and at the level of support that is required

by the individual and their significant others, recognising that this will change

over time.

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Further, the key to successful community based provision is not just being

locally based, but being fully interlinked, integrated and accessible as well.

Developing full integration and accessibility will ensure that services, once

provided locally, can be readily accessed and equally and fully availed of

by people with the widest range of capabilities throughout the community.

Developing full interlinkage across the various services provide will ensure

that individual service users no longer experience service provision as

persistently and frustratingly fragmented (however conveniently located).

Developing formal protocols to support service user transition from one

particular community service network to another will ensure that ongoing

support is provided where needed.

Ongoing communication amongst service users, service providers, the

broader community and funding bodies, and across inter-related services

and service networks will ensure that evolving needs are clearly identified,

preferred forms of provision are fully explored and resources are used to

maximum effect in building high quality service provision.

Recommendation

The NDA recommends that facilitation of interlinkage, integration and

accessibility of community based provision be promoted by the Strategic

Review.

Independent needs assessment

The Disability Act 2005 has established the statutory basis for independent

needs assessment. The NDA looks forward to working with the Department of

Health and Children and the HSE in the development, implementation,

monitoring and review of the independent needs assessment system.

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It is noted that the NDA’s report Requirements for a System of Independent

Needs Assessment in Ireland [2003]

identifies the key principles which should underpin an independent

system of needs assessment in Ireland;

identifies the key elements of a system of independent needs

assessment;

identifies a framework and structure for a system of independent needs

assessment in Ireland which will cross-cut all disabilities, relevant

sectors and Government Departments;

makes recommendations for an independent Irish system of needs

assessment in relation to:

1. policy

2. procedures

3. infrastructure

4. costs.

Recommendation

The Strategic Review comments on how the independent needs assessment

system will be developed, implemented, monitored and reviewed in line with

the provisions of the Disability Act 2005.

Person-Centred Planning

Person centred planning is a way of discovering:

(1) how a person wants to live their life and

(2) what’s required to make that possible.

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It’s planning that takes as its primary focus a person as opposed to e.g. a

disability or a service. It’s ‘whole person’ oriented - not just focused on e.g.

managing a disability. It’s about all of life – not just disabilities and disability

services.

Person centred planning originated with Wolfsenberger, has its roots in the

normalization and independent living movements and is grounded in a social

model of disability and a strengths-based approach.

It is

needed because it is time to move on from focusing solely on a person’s

disability, from trying to ‘manage disabilities’ and ‘help’ or ‘fix’ people - to

appreciating people as people and allowing and supporting them live their

lives as they wish; from taking charge, taking over peoples’ lives, designing

service solutions and deciding and demanding co-operation in pursuing

anyone’s notion of what’s best for someone other than that person

themselves - to allowing freedom of expression and movement and

supporting people as they want.

Person centred planning is not service planning, traditional Individual Planning

or Assessments. These are what services do to work out - from their

perspective – how they can go about helping a person.

Person centred planning is best viewed as a lifeplan for an individual which

may be helpful in informing these and other forms of planning relating to them.

In identifying which and where exactly both particular and related forms of

support or services are, are not or are no longer required by an individual or

will be required by them for a short period only, and in flagging new forms of

support or services likely to be required in the future, for example, person

centred planning can, uniquely, offer the providers and funders of these

supports and services with a clear overview and advance indication of where

resources will and will not be required, will or will need to be allocated or freed

up and re-deployed and, perhaps, also, need to be further developed or

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integrated for the future, so, thus ensuring that these resources are used to

best advantage.

Recommendation

The NDA recommends that the Strategic Review identifies the process for

developing, implementing, monitoring and reviewing person centred planning

in statutory disability services and non-statutory disability services funded by

the Department. .

Information Accessible, adequate and timely information is a vital to the effective

utilisation of disability services.

Recommendation

The NDA recommends that the Strategic Review promotes the development

of an information strategy for disability services to be developed in partnership

with all stakeholders and with the advice of relevant statutory bodies such as

the NDA, Comhairle, Equality Authority and the Office of the Ombudsman.

The NDA recommends that information provided by disability services should

include:

the full range of choices of provision, opportunities to access different

services and interventions e.g. alternatives such as respite and

domicilary care

impairments, conditions(s), prognosis, progress within service, needs

medication: prescription, effects, procedures for administration

rights and entitlements.

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Protecting vulnerable adults

The NDA has worked on the issue of violence against women with disabilities

since 2001 and on violence against people with disabilities since 2004. The

NDA has produced Responding to violence against people with disabilities

and proceedings from a conference ‘Breaking the silence’ in 2004.

This partnership initiative will this year deliver NDA research into violence

against people with disabilities and a NDA strategic document addressing

policy, research and standards issues.

Recommendation

The NDA recommends that the Strategic Review indicates how disability

services will strategically address the issue of violence and abuse through

policy, research and provision.

The NDA recommends that the Strategic Review should advocate for

collaborative, person-centred responses to the needs of those who have

experienced violence and abuse and that services should be available locally

and expeditiously for those who require them.

The NDA recommends that the Strategic Review promotes inter-sectoral

collaboration between services within the disability, violence and criminal

justice sectors.

Pharmacy

The NDA has a number of concerns regarding the role of pharmaceutical

companies in both specialist and general health services. Particular concerns

are in regard to:

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The provision of non-partisan, plain English information on the function

(aims) and effects of medication as well as safe methods for coming off

medication.

The availability of affordable medication and the benefits trap’.

The role of pharmaceutical industry in reviewing their products in the

medical, scientific press.

The perceived partisan influence of pharmaceutical companies on

research and prescription practices.

The reliance of services on pharmaceutical companies for continuing

professional education and educational resources.

The lack of confidence of users and carers in the efficacy of

medication, the quality of clinical practice including prescribing and

reviewing medication, and the reliance on medication without providing

a choice of alternatives including complementary therapies.

The absence of a direct communication channel from service users

and carers to the Irish Medicine’s Board regarding problems

experienced with medication. At present this is through the prescribing

clinician and service.

The limited use of the professional expertise of pharmacists within the

health services in the provision of information, education, review,

monitoring and advice.

The lack of a holistic approach to considering and valuing the effects of

medication on health and functioning

The use of polypharmacy.

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Recommendation

The NDA recommends that the Strategic Review includes a commitment that

the Department will undertake a review of the role of the pharmaceutical

industry in disability services and the wider health system, drawing on the

review undertaken by the UK House of Lords.

Evaluation, monitoring and review

The NDA expresses concern with the approach and timeframe taken to this

Strategic Review, including:

the short time frame for the Strategic Review, despite it being a

commitment under Sustaining Progress since 2003

the decision to focus on people with physical, sensory and intellectual

disability despite the Government policy since the Report of the

Commission on the Status of People with Disability (1996) of including

people with mental health and emotional impairments within disability

the fact that a number of Working Groups that were to be established

were not set up, most notably the Working Groups on Quality and

Standards and Personnel and Staffing.

the lack of clarity regarding how Reports of the Working Groups and

the current call for submissions will fit into the overall development of a

new Strategy for Disability Services.

Finally, the Department has not indicated how the implementation of the

overall strategy will be monitored.

The absence of a coherent and systematic overall approach to monitoring can

be a limiting factor in the development of high quality programmes and

services. This situation may lead to (1) poor information gathering, (2)

dissatisfaction amongst service users - with no proper means of redress, (3)

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services and programmes that continue to operate without agreed standards,

with no clear and accountable assessments audits or inspections and, (4)

generally speaking, people with disabilities and other relevant stakeholders

who remain largely unaware of these issues.

Recommendation

The NDA recommends that the Department puts in place a rigorous

monitoring system in order to continuously review the impact of the Strategic

Review and respond accordingly.

Part 4: Funding and Resource Allocation

In the NDA’s submission to the Minister of Health and Children on the Health

Strategy 2001, the NDA recommended the development of criteria for

resource allocation informed by the following concepts:

levels of need in the community for the service

current availability of appropriate services to meet need

impact of the service, or lack thereof, on the health and quality of life of

the person

impact of the service, or lack thereof, on the health and quality of life of

family and informal carers.

The NDA strongly proposed that such criteria should explicitly state that the

presence of any disability should not preclude any person or group of persons

from receiving a service.

Further, our submission on the Health Strategy 2001 proposed the systematic

implementation of a transparent process for contracting between the funder

and all service providers. This process of contracting should include:

prior analysis of community need including meaningful consultation

processes, definition of service required and secured funding

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public advertising of intent to purchase a new service and request for

proposals including criteria for awarding service contracts

invitation to tender

pre-agreement assessment of the capacity of prospective providers to

deliver the required service

selection of preferred provider

negotiation and signing of contract

development and operation of service

ongoing monitoring of both levels of service and quality against agreed

criteria.

The NDA consider that the aggregate data gathered through independent

needs assessment should inform analysis of service needs.

Recommendation

The NDA recommends that the Strategic Review recommends that

a comprehensive and transparent funding system, including reporting

arrangements, should be developed for statutory and non-statutory

disability services

a system of transparent funding should report on how the multi-annual

investment under the National Disability Strategy is used

the data provided through the reporting arrangements should be

disaggregated and analysed to ensure the appropriate and equitable

allocation of resources

the budget for services should be increased annually in line with

inflation plus the requirements of the implementation of the National

Disability Strategy.

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funding for disability should be ring-fenced within the health budget

funding should be ring-fenced for specific services and initiatives for

example new innovative provision, health promotion, attitudinal change

programmes, disability / equality awareness training, to protect the

integrity of the development of a comprehensive service and

implementation of the whole National Disability Strategy.

Principles that should inform funding of services The NDA notes the World Health Organisation stated funding target in Health

21 – health for all in the 21st century.

Target 17 – Funding Health Services and Allocating Resources

By the year 2010, Member States should have sustainable

financing and resource allocation mechanisms for health care

systems based on the principles of equal access, cost-

effectiveness, solidarity and optimum quality.

In particular:

17.1 spending on health services should be adequate, while

corresponding to the health needs of the population;

17.2 resources should be allocated between health promotion and

protection, treatment and care, taking account of health impact,

cost-effectiveness and the available scientific evidence;

17.3 funding systems for health care guarantee universal coverage,

solidarity and sustainability. [132]

Funding for disability health services should

ensure the level and quality of provision, which meets the requirements

of national and international human rights and equality instruments

be equivalent to that of other health facilities

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target health inequalities, reflecting socio- economic need

be dependent on the provision of a quality of service that meets

stringent national standards

deliver value for money

be flexible to address changing need

support innovation

be withdrawn from services which do not provide a nationally agreed

quality of provision

be linked to addressing the needs of the individual

work within an investment framework, considering the costs to the

individual, family, community and wider society of not providing

resources to support the recovery and social inclusion of persons with

disabilities

be informed by the impacts of budgetary cuts in the disability sector on

the individual, family and community.

Recommendation

The NDA recommends that the Strategic Review should include a set of

principles to inform future funding of disability services, informed by the WHO

funding target.

Part 5: Conclusion

The NDA intends the information and recommendations within this

submission to be constructive and useful. The NDA recognises the

significance and challenge of the Strategic Review. Within our statutory

remits, the NDA welcomes opportunities to work with the Department in the

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completion of the Strategic Review and its implementation, monitoring and

review.

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Draft to Authority 27 September 2005

Appendices

I References

Barron, S. & Mulvany, F., (2004), Annual Report of the National Intellectual Disability

Database Committee 2004, Dublin: Health Research Board

Central Statistics Office, (2002), Quarterly National Household Survey: Disability in the

Labour Force, Second Quarter 2002, Dublin: CSO

Central Statistics Office, (2002), Census of Population, Dublin: CSO

Comhairle (2003) The Jigsaw of Advocacy: Finding a voice, Dublin: Comhairle

Commission on the Status of People with Disabilities (1996) A Strategy for Equality: Report

of the Commission on the Status of People with Disabilities, Dublin: The Stationery Office

Galligan, K. & Mulvany, F. (2004), National Physical and Sensory Disabilty Database:

Prelimiary Analysis, Dublin: Health Research Board

Irish Heart Foundation, (2001), Fifty Years of Heart Disease in Ireland: Mortality, Morbidity

and Health Service Implications, Dublin: Irish Heart Foundation

National Disability Authority (2002) Public Attitudes to Disability in the Republic of Ireland,

Dublin: National Disability Authority

National Disability Authority (2003) Towards Best Practice in Provision of Health Services for

People with Disabilities in Ireland, Dublin: National Disability Authority

National Disability Authority (2003) Responding to violence against people with disabilities,

Dublin: National Disability Authority and Women’s Aid

National Disability Authority (2004) Strategic Plan 2004-2006, Dublin: National Disability

Authority

National Disability Authority (2004) Disability Proofing Template For Local Government

Barcelona Declaration Project 2001-2004, Dublin: National Disability Authority

National Disability Authority (2005) The Experiences of People with Disabilities in Accessing

Health Services in Ireland: Do inequalities exist?, Dublin: National Disability Authority

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Draft to Authority 27 September 2005

Punch, A., (2005), Panel Discussion Meeting the Needs of the Older Population: The

Evidence Base for Planning, Dublin, Planning for an Ageing Population: Strategic

Considerations Conference Proceedings, Dublin: NCAOP

Shevlin,M. and Rose,R., (2003) Encouraging Voices Respecting the insights of young

people who have been marginalised, Dublin: National Disability Authority

World Health Organisation, (2001), Mental and Neurological Conditions Factsheet, WHO

World Health Organisation, (2004), Atlas of Heart Disease and Stroke, WHO

Whyte,J., (2005) Research With Children With Disabilities Guidelines and Checklist for

Good Practice, Dublin: National Disability Authority

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