Proceedings-of-Ageing-and-Disability-Seminar-Word

OPENING SESSION: AGEING AND DISABILITY Chair: Cllr Eibhlin Byrne, Chair, National Council on Ageing and Older People Introduction to the Joint NCAOP/NDA Initiative Patricia Conboy 5 Mapp

National Council on Ageing and Older People

National Disability Authority

Proceedings of the Seminar:

The Interface Between Ageing and

Disability

6 February 2006, Burlington Hotel Dublin

Editor: Dr Wendy Cox

OPENING SESSION: AGEING AND DISABILITY

Chair: Cllr Eibhlin Byrne, Chair, National Council on Ageing and Older People

Introduction to the Joint NCAOP/NDA Initiative Patricia Conboy 5 Mapping Issues for Policy and Practice in the Irish Setting Shari McDaid 8 Adopting a Life Course Approach to Ageing and Disability Dr Mark Priestley 16

SECOND SESSION: AGEING WITH A DISABILITY AND DISABILITY IN

OLD AGE – PARTICIPANT EXPERIENCES

Chair: Cllr Eibhlin Byrne, Chair, National Council on Ageing and Older People

Reports from small group discussions 24

THIRD SESSION: PANEL FORUM

Chair: Siobhan Barron, Acting Director, National Disability Authority

Ageing and Physical Disability Dr Ken Mulpeter 39 Ageing and Intellectual Disability Dr Mary McCarron 42 Ageing and Mental Health Dr Margo Wrigley 49 Older People with Disabilities and Assistive Technology Gerry Ellis 54

On 6 February 2006, the National Council on Ageing and Older People and the National Disability Authority jointly hosted a half-day seminar in the Burlington

Hotel, Dublin, entitled The Interface Between Ageing and Disability.

Representatives of ageing and disability organisations, statutory and non-statutoryservice planners and providers, experts on ageing and on disability, people with disabilities and older people were all invited to participate

The seminar was an important step in a three-stage project undertaken jointly by the two agencies It set out:

• To share the findings of a joint discussion paper, based on a review of the literature, on the interface between ageing and disability;

• To provide a framework to enable seminar participants to discuss the findings in the light of their own experience of policy and practice

responses to people ageing with a disability or affected by disability in old age;

• To facilitate participants’ feedback in order to inform the development of adraft policy position paper by the NCAOP and NDA on ageing and

disability

Seminar Proceedings

The seminar proceedings follow the format of the seminar, and include as far as possible the complete texts of presentations made to the meeting The seminar wasorganised in three sessions:

Opening session

The opening plenary session provided an overall context and focus for the work ofthe seminar It was addressed by three speakers involved in policy and research onthe interface between ageing and disability:

• The rationale for the joint project between the NCAOP and the NDA was set out by Patricia Conboy, Policy Officer with NCAOP

• The two agencies’ joint analysis of the current position and central issues involved in ageing and disability in Ireland, was outlined by Shari

McDaid, NDA’s Policy and Public Affairs Advisor, in a presentation based

on ‘Ageing and Disability: a Discussion Paper’

• The life course approach to ageing and disability and its relevance to Irish policy and practice was presented by Dr Mark Priestley of the University

of Leeds

Second session

In the second session of the seminar, participants formed four small groups for workshop discussions based on their own experiences, which were then

summarised in brief oral reports to the plenary

The questions put to these groups were:

1 Are there policy and practice areas that you want to identify as of

concern for people ageing with a disability, or who experience

disability in old age?

2 What specific issues arise in those areas?

3 Specifically in terms of health and social care services, what issues

arise in responding to people who are ageing with a disability, or

who experience disability in old age?

Third session

In the third session of the seminar, a set of short panel presentations from four expert practitioners provided a range of perspectives on issues arising at the interface between ageing and disability, and their implications for policy Their presentations focused on:

• ageing and physical disability (Dr Ken Mulpeter)

• ageing and intellectual disability (Dr Mary McCarron)

• ageing and mental health (Dr Margo Wrigley)

• assistive technology for older people with disabilities (Gerry Ellis)

Closing session

Following a short general discussion, the Directors of the National Disability Authority and the National Council on Ageing and Older People responded to the presentations and discussions, and contributed closing remarks

Appendices

A list of seminar participants, and details of the chairs and speakers for each session, are appended

OPENING SESSION

AGEING AND DISABILITY

Chair: Cllr Eibhlin Byrne

Opening of the Seminar

Cllr Eibhlin Byrne, Chairperson, National Council on Ageing and

Older People

It is widely acknowledged that a society which plans to grow old can afford to grow old, and it is this notion of planning and policy which is central to our discussions this morning

Disability and ageing are realities for our society, each unique but interwoven Clear policies reflecting the realities of peoples’ lives, rather than the

categorisations of the health services, need to be developed

The audience gathered here is well placed to direct and to provide for these policies

We begin with Patricia Conboy, who will set the context for our discussions and will talk about the joint initiative between the National Disability Authority and the National Council on Ageing and Older People

Introduction to the Interface between Ageing and Disability

Patricia Conboy, Policy Officer, NCAOP

Introduction

This short presentation outlines the rationale for the coming together of the

National Council on Ageing and Older People with the National Disability

Authority, to work on what we have called The Interface between Disability and Ageing It will briefly sketch six points These will be further developed by Shari

McDaid in the presentation which follows

An age friendly, disability friendly, person-centred society

In 2005, the National Council on Ageing and Older People published a position

paper, called An Age Friendly Society, in which we argued that a society that is

age friendly must also be disability friendly Ultimately, a society which is both age friendly and disability friendly is person-centred, that is, designed to respond

to the needs of individuals rather than to the labels that are assigned to them

The Census findings flag to us a reality and a requirement for strategic planning and action, in terms of the sheer numbers of people whose needs relate to both ageing and disability

Common and divergent interests; developing new approaches

The Census findings also suggested to the National Council and the National Disability Authority that there may be areas of common interest between the ageing and disability sectors, though we recognise that there will also be areas of divergence between us

So we have come together to begin to map out those areas of common and

divergent interest, and to develop recommended approaches to policy and

practice, in the interests of people with disability and people who are ageing

The Irish context

All of this represents a considerable challenge in the Irish context where:

• There are two population groups, those with early onset disability who are ageing, and older people who experience the late onset of disability;

• The Irish health and social services categorise older people and people with disabilities as two distinct client groups;

• Ireland is currently experiencing great movement in terms of policy,

legislation, funding and service development initiatives, which carry different implications for people on the basis of how they are categorised

administratively, and not necessarily on the basis of their needs as individuals,

be they older people or people with disabilities

The joint project

To meet this challenge, the National Council and the National Disability Authorityhave undertaken a joint project in three stages:

• The first was a literature review on the interface between ageing and disability

Its findings have been incorporated into the Discussion Paper Ageing and Disability, and they form the basis for Shari McDaid’s presentation today

• The second is today’s seminar, at which we hope to hear the views of people

in the ageing and disability sectors in relation to these findings, and to ensure that our joint work on policy and planning will be informed by the issues and concerns of people ‘on the ground’ with direct experience of the realities

• Following the seminar, the third stage will be the development of a joint policy position paper, in draft and final versions, that will set out the shared recommendations of the National Council on Ageing and Older People and theNational Disability Authority on policy approaches to ageing and disability in the Irish setting

Situating the project

Finally, in order to situate the joint project, I want to indicate again the scale of thechallenge, by referring to the experience of the Council in developing a position statement on the age friendly society We identified the barriers to the creation of such a society, including:

• Ageism as a form of discrimination affecting older people;

• The lack of a statutory basis for policy on older people;

• Inappropriate concepts and models of older age, such as the deficit model and heroic model;

• Inadequacies in information systems for planning purposes;

• A range of policy issues, for example the provision of services on the basis

of eligibility rather than entitlement

In a parallel way, the National Disability Authority has addressed barriers to the participation of people with disabilities in Irish society, similarly highlighting issues of discrimination, inappropriate models and concepts, and specific issues ofpolicy and practice

So we have two sectors that have worked mainly in parallel Perspectives,

concepts, models, language have differed Our task now is to forge from those diverse perspectives the common goals and ultimately new models that will be more responsive to the needs of people ageing with a disability and/or

experiencing the onset of disability in old age

That is what you, through your participation in this seminar, are helping us to do this morning

Mapping Issues for Policy and Practice in the Irish Setting

Shari McDaid, Policy and Public Affairs Advisor, National

development

I have chosen to begin my presentation with a picture of a man and a woman breaking ground because I think we are breaking new ground here today, in the way that people from the ageing and disability sectors are getting together to

discuss our common and divergent issues This is a new start.

We have statistics which show that a substantial number of older people are disabled, and that the numbers of older people are increasing But the question is how do we respond? Currently there is widespread discussion of a ‘demographic timebomb’ This discussion presents the ageing population as a problem

However, we would like to shift the debate, to see the growing ageing population

as a positive achievement, the harvest of our society, and something to celebrate

In order to do that, we need to re-think ageing, disability and dependency and to see how we can respond positively to an ageing population

What the data tells us about older people with disabilities

To begin talking about ageing and disability, it will be helpful to describe the kinds of disabilities we are concerned with

• The largest group of older people with disabilities are those with mobility difficulties 70 per cent of older people with disabilities experience

restriction in physical activity

• Older people also have a high rate of sensory impairment, with 30 per centexperiencing some difficulty hearing, seeing or speaking

• Older people can also develop intellectual impairments such as difficulty learning, remembering or concentrating

• According to figures in the UK, older people experience significant rates

of mental health difficulties

• Finally, older people are more likely to have more than one type of

disability Of disabled people over age 65, about two thirds experience more than one kind of disability or restriction, and the incidence of

So we need to figure out how social policy can address the overlapping and complex issues of ageing and disability, and to try to imagine that, I have chosen

an image of the intersecting strands of a molecule, because this is a complex phenomenon

Ageing with a disability versus disability with ageing

In thinking about ageing and disability, it also may be useful to distinguish

between those who are ageing with disability and those who acquire disabilities inold age

Some commentators argue that there are distinct issues for people with early onsetdisabilities They may have different life experiences from non-disabled people: fewer social supports, lack of an employment history, few assets for retirement, and in some cases pre-existing high dependency (Bigby 2002, p.232) People withearly and mid-onset disability often age within a service system rather than

external to it (Bigby 2004, p.244) Do we need to incorporate an ageing

perspective into disability services, or are we talking about bringing people with disabilities into older people’s services?

Another way of asking the question is: do we want to allow people to age ‘in place’, within the services they are familiar with, or is it about giving people a choice between ageing in place or moving into older people’s services?

Older people often see impairment as a normal part of ageing and do not tend to think of themselves as disabled (Priestley 2003, p.155) So the experience of

someone who acquires disability with age is perhaps different They may

experience the development of impairment gradually, after a long period of full capacity They may experience significant impairment only after a long period of involvement in work or care-giving, in other words after a long period of social inclusion They may have more resources to call upon for support, such as a spouse or children to assist in care-giving, and financial resources for purchasing care

Finding common ground

These scenarios suggest that the policy issues for older people acquiring

disabilities versus people ageing with disabilities may be different However, thereare also good reasons to think in terms of common ground

Comparison of the UN Principles for Older Persons (1999) with the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1992)

shows a number of overlapping concerns Both documents call for actions to support independence and autonomy (UN 1992, Rule 3; UN 1999, para 12) Both documents call for services to assist people to reach their optimum level of function (UN 1992, Rule 3; UN 1999, para 11) Both documents assert the right

of people to accessible environments (UN 1992, Rule 5; UN 1999, paras 5 and 6).Both documents support the fundamental right of all people to participate in society

In some countries, older and younger people with disabilities are learning from each other In the US, an increasing number of ageing service providers are developing ‘consumer-directed’ services, an approach which comes from the disability sector’s Independent Living Movement The Independent Living

Movement has defined independent living in terms of the right of all persons to participate and reside in the community and to control and make decisions over their own lives (Canadian Association of Independent Living Centres 2003) Evidence from the US also suggests that older people with disabilities want more direct control over their long-term support services (American Association of Retired Persons 2003, p 8).

So too, policy literature is increasingly recognising the common need for an accessible built environment, including housing, transport and support services, for both older people and people with disabilities In the US, the concept of ‘a liveable community’ is used to describe

one that has affordable and appropriate housing, supportive

community features and services, and adequate mobility options,

which together facilitate personal independence and the engagement

of residents in civic and social life (AARP 2005, p 16)

We should add that this also requires accessible communication tools so that people can participate in their community’s cultural life

In the Netherlands, they are seeking to develop integrated communities Effort hasgone into physical adaptation of existing homes, and into integrated community designs for housing and care The focus is on building assisted living complexes, which include a day centre, physical therapy space and services for use by both residents and neighbourhood inhabitants So the care for people of all ages and all levels of dependency is integrated into the same service

Many of the characteristics required for ‘liveable communities’, such as

supporting home adaptation and universal design in home-building, developing accessible community public transport, and providing access to health and social services are of benefit to both older and disabled people

Concepts to help approach ageing and disability

In reviewing the literature on ageing and disability, three concepts have come to the fore

Thinking about ageing: the life course approach

Firstly we can consider how we want to think about ageing Traditionally, ageing has been associated with physical and mental decline It is conceptualised in terms

of loss of faculties Viewed from this perspective, it is easy for ageing to be medicalised, and some theorists have argued that ageing is increasingly

conceptualised as a medical problem (Robertson 1997, p.427)

However, more recently ageing has been conceptualised in terms of a life cycle, orlife course As Bigby states, ‘ageing is a process, not an event’ (2004, p.19) A life course perspective recognises that ageing is a lifelong process We are all ageing

It also recognises the diversity in the ageing experience - that each person will age

in unique ways at different times So rather than developing policy solutions for specific age groups, we need to develop services and environments that can allow all people to age and can respond to individuals’ unique changing needs

The social model of disability

Secondly, from the disability literature we can adopt a social model of disability This social model distinguishes impairment from social exclusion According to this view, impairment is a condition of the body Disability is a situation of social exclusion caused by the organisation of society

The model thus places the focus of change on social institutions and the

environment, rather than on the individual It also stresses the role of

empowerment, participation and leadership of disabled people in effecting change.From a social model perspective, policy should be geared towards removing disabling barriers and providing enabling supports so that people can continue to

be part of their community

The concept of dependency

Thirdly, we can consider the concept of dependency Recently, Good and

Fitzgerald (2005) drew a distinction between ‘necessary dependency’, which is anintegral part of being human, and ‘social dependency’, which is a product of the interaction between the individual’s life situation and the structures and systems within which that individual lives

This distinction has parallels with the social model of disability as described above Like the social model of disability, a social conceptualisation of

dependency puts the focus on society’s role in producing dependency The

suggestion is that dependency is not a de facto situation, but can be reduced through changes in attitudes, in the physical environment and in the provision of adequate supports Social dependency focuses on whether society has created structures and supports that facilitate and maximise independence

Where are we at now in Ireland? (1) Data issues

One of the significant impediments to addressing ageing and disability in Ireland

is the lack of available data The NCAOP has highlighted the lack of centred data on older people For example, the National Physical and Sensory Disability Database excludes persons whose disability arises from age 66

person-onwards So too, there is no national disability database which covers people who develop cognitive impairment after age 65 There is also currently no

comprehensive database for people with mental health difficulties

In addition to a dearth of information, the NCAOP highlights how the

organisation of information hinders planning for complex needs The

administrative databases that exist operate as ‘islands of information’, with a lack

of integration between datasets for different services They highlight, for example,

a lack of integration between the Hospital In-Patient Enquiry Scheme (HIPE) and the Long-Stay Activity Statistics

I would also point out that in the areas of physical, sensory and mental health difficulties, there needs to be an integrated database that can capture the

complexity of peoples’ situations As we stated earlier, two thirds of people over

65 with a disability have more than one disability

National Disability Survey

The NDA has been involved in developments to improve the available data on disability in Ireland Significant progress has been made, perhaps most

importantly with the approval by Government of the first Irish National Disability Survey to be carried out in September 2006 by the Central Statistics Office The questionnaire will contain sections on impairments, on what aids and supportsare available and what are needed, and on policy areas such as education,

employment, training, transport and the built environment The National

Disability Survey will cover all age groups within the population, including those over the age of 65 It will also cover both people living in private residences and those in institutions The intention is that this survey will provide for the first timethe baseline data required by policymakers and service providers

Where are we at now in Ireland? (2) Issues relating to services

In terms of current service provision, we all know that there is a shortfall between provision and need However, there are also issues of poor coordination and inequity

Structures and organisation

Historically, services in Ireland have been organised around distinct client

populations of older people, people with physical and people with sensory

disabilities, people with intellectual disabilities and people with mental health difficulties This category division persists in the new structure of the Health Service Executive, which assigns responsibility for these groups to three different

‘Care Group Managers’ The divisions are underpinned by separate budgets for each group There are also difficulties with the historic orientation of services towards acute care

Deficits in community care

Relative to other countries, community care services have been underdeveloped For example, in 1993, only 3.5 per cent of the Irish population used home help, compared to 14 per cent in Northern Ireland and 19 per cent in Sweden O’Neill and O’Keefe reported in 2003 that there was virtually no access to speech therapy,

clinical nutrition or social work for older people (O’Neill and O’Keefe 2003,

p.1284)

Older people’s attitudes

We see, in the NCAOP’s recent report on health and social services in Ireland, the

HeSSOP II Report, that there is some level of stigma or embarrassment

experienced by older people in relation to availing of these services (NCAOP 2005) So there is work to be done to encourage people to accept the supports that will enable them to live in the community

Future needs for long-term care

Ireland has the second lowest expenditure on long-term care amongst 19 OECD countries (OECD 2005) This suggests that the system remains heavily reliant on informal care Given current trends towards women working, and the likely

disabilities, demands for formal care may increase substantially over the coming years On the other hand, the structure of formal care is likely to change, as recipients of care push for more user-controlled, home-based supports to enable them to live independently in the community

The NCAOP has emphasised the need to provide a continuum of care, of which long-stay care is a part (NCAOP 2005c), and to ensure that care is coordinated through a care and case management approach (Delaney et al., 2001)

They have argued that the role of assessment is the cornerstone of long-term care, and that such an assessment should be ‘holistic, person-centred and encompass medical, social, psychological and financial domains’ (ibid, pp.17-18)

Person-centred planning

Person-centred planning is an approach to care at the individual level which focuses on developing a life plan for the individual Person-centred planning is useful for addressing ageing because it is flexible and responsive to changing needs, grounded in a social model and a strengths-based approach and takes into account the wider network in terms of support and of needs (NDA 2005a)

Liveable communities?

In terms of creating ‘liveable communities’, the NDA’s recently published Review

of the Effectiveness of Part M of the Building Regulations documents the

inaccessibility of much of Ireland’s built environment Over 30 per cent of homes

in Ireland are not accessible (NDA 2004), and even in new one-off housing, compliance with accessibility provisions of building regulations was found to be

as low as 24 per cent (NDA 2005c, p.93-94) There are concerns that many social venues such as pubs and churches are inaccessible (NDA 2005b)

Many older people with disabilities do not have access to transportation, either public or private Almost one half of households with an elderly disabled person have no car, and two thirds of adults with a disability are unable to access public transport, so the potential for social isolation is great

Conclusion

In this presentation, I have sought to provide a broad overview of some of the concepts, policy approaches and issues regarding the interface between ageing and disability

There are issues I have not been able to touch on here that are covered in more depth in the Discussion Paper itself, for example the question of gender and the potentially different experience of ageing and disability for women versus men There is the issue of how ageing is experienced by different cultures There are many new members of the Irish community, so that we need to figure out how to respond appropriately to ageing within their cultural contexts

There are also questions about the different experience of people from the gay andlesbian community And there are other issues we have not had a chance to

address yet, but hope to, and some of that is discussed in the Discussion Paper itself

Today’s seminar provides an opportunity for you to consider all of these in light ofyour own experience

I believe we are at the beginning of this process, so I have chosen to conclude with a picture of the space shuttle because I think we need to chart uncharted territory, to use our imaginations and to develop ideas for responding to the older disabled population that will make sense in the Irish context I look forward to hearing from you in the discussion

References

American Association of Retired Persons (AARP) (2003) Beyond 50.03: A

Report to the Nation on Independent Living and Disability, Washington, D.C.,

AARP Public Policy Institute

American Association of Retired Persons (AARP) (2005) Beyond 50.05: A

Report to the Nation on Livable Communities: Creating Environments for

Successful Aging, Washington, D.C., AARP Public Policy Institute.

Bigby, C (2002) ‘Ageing people with a lifelong disability: challenges for the aged

care and disability sectors’, Journal of Intellectual and Developmental

Disability 27(4), pp 231-241.

Bigby, C (2004) Ageing with a Lifelong Disability: A Guide to Practice,

Program and Policy Issues for Human Services Professionals, London, Jessica

Kingsley

Canadian Association of Independent Living Centres (CAILC) (2003) ‘What is Independent Living?’ at the Canadian Association of Independent Living Centres’ website <http://www.cailc.ca/CAILC/text/whatisil/intro_e.html>

Delaney, S., Garavan, R., McGee, H and Tynan, H (2001) Care and Case

Management for Older People in Ireland, Dublin, National Council on Ageing

and Older People

Good, A and Fitzgerald, E (2005) ‘Understanding Dependency: Challenges for

Planners’, in National Council on Ageing and Older People (NCAOP), Planning

for an Ageing Population: Strategic Considerations, Dublin, NCAOP

National Council on Ageing and Older People (NCAOP) (2005c) Submission to

the Department of Health and Children on the Financing of Long-term Care

of Older People, Dublin, NCAOP.

National Disability Authority (NDA) (2004) Survey on Social Participation and

Disability, Dublin, NDA.

National Disability Authority (NDA) (2005a) Person-Centred Planning in the

Provision of Services for People with Disabilities in Ireland, Dublin, NDA.

National Disability Authority (NDA) (2005b) How Far Towards Equality?

Measuring how Equally People with Disabilities are Included in Irish Society,

Dublin, NDA

National Disability Authority (NDA) (2005c) A Review of the Effectiveness of

Part M of the Building Regulations, Dublin, NDA.

OECD (March 2005) Draft Report on Long-term Care Policies for Older

People, Paris, OECD, quoted in NCAOP (2005) Submission to the Department

of Health and Children on the Financing of Long-term Care of Older People,

Dublin, NCAOP, p.12

O’Neill, D and O’Keeffe, S (2003) ‘Health Care for Older People in Ireland’,

Journal of the American Geriatrics Society 51:1280-1286.

Priestley, M (2003) Disability: A Life Course Approach, Cambridge, Polity

Press

Robertson, A (1997) ‘Beyond apocalyptic demography: towards a moral

economy of interdependence’, in Ageing and Society 17:4, pp.425-446.

Adopting a Life Course Approach to Ageing and Disability

Dr Mark Priestley, Centre for Disability Studies, University of

Defining disability: individual and social models

In terms of policy on disability, over the last thirty years we have seen a move at both EU and UN levels, from what we might call the individual model of

disability to the social model, from policies which look at the problems of

individuals towards policies which look at the problems of societies

The perspective implicit in the individual model is that it is the person that has theproblem, and therefore the person that has to be changed, through treatment, therapy, rehabilitation, or indeed by preventing such people from being born in thefirst place The perspective implicit in the social model, on the other hand, is that

it is society and its institutions that have the problem, and therefore it is those social institutions that need to change

The shift in policy focus can be seen very clearly in the development of the United Nations Convention on the rights of disabled people, which is currently coming to fruition This shift has been almost entirely due to the pressure and self-advocacy of disabled people and their organisations

For example, twenty-five years ago, at the foundation of the international disabledpeople’s movement, Disabled People’s International defined disability in social model terms as ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others, due to physical and social barriers’ If policy is going to make a difference, it will do so by removing those physical and social barriers

Life course approaches to disability

One of the problems we have in thinking about disability is that we have not thought about it in terms of the life course We have not thought about those issuesequally for children, for adults, and particularly for older people

Without delving too deeply into theory, there are two ways of thinking about disability in the life course

• The first is an individual, biographical approach, which involves thinking about individual people’s lives, about how disability impacts on them, and how social exclusion affects outcomes for them as an individual.

• The second way of thinking about disability in the life course is a

structural or normative way You can ask how a society, like Ireland or Britain, treats disabled people, and how its policies and institutions treat people at different stages in the life course Do our policies treat older disabled people in a different way to younger disabled people? Do we have separate policies and separate institutions? Do we regard disability assomething different in childhood, adulthood and old age?

When you start to look at the problem in that way you find that there are very considerable differences and some inequities, and I would argue that older people often get a worse deal

An adult centred system?

I have developed these ideas in two books that explore both the individual life story dynamic of disability and also the way in which generational inequalities

work: Disability and the Life Course: Global Perspectives (ed Priestley 2001) and Disability, a Life Course Approach (Priestley 2003)

In summary, when we look at the way that disability policy works in most modernsocieties, we can see an adult-centred system, that is, policy priorities that are focused on disabled adults, as opposed to disabled children or disabled older people We see adulthood as being the culmination of life, a view that affects disability policy in a number of ways

As Sarah Irwin puts it, ‘independent adulthood is the key to inclusion and relative advantage, whilst childhood, youth and later life are characterised as socially disadvantaged or marginalised positions…’ (Irwin 1999, p.692)

The following diagram shows childhood, adulthood and old age overlapping, and disability almost as a separate category We have tended to treat disabled people through social policies as a separate group, somehow outside childhood or outsidenormal adulthood

Disability and the Life Course

People go through life in different ways Our image of a normal life, however, is one without disability In consequence, policies often treat people born disabled in

a way that takes them out of normal childhood into segregated schools, and keeps them out of normal adulthood in segregated institutions, and perhaps out of the processes of normal ageing

Others who are not born disabled become increasingly segregated, particularly during adulthood Policy may favour integrated schooling, but still exclude

disabled people from the labour force Disability policy has tended to focus on adult-centred issues, particularly on employment, and on exclusion from

employment, but much less attention has been paid to older disabled people I shall come back to this later

Ways of thinking about ageing

The interface between disability and ageing is complex The following diagram shows this in terms of four overlapping circles

You can think of disability and ageing in four ways: in terms of the body; in terms

of identity; in terms of culture and how we treat old age; or in terms of social structure, the economy and our institutions I shall take these different

perspectives one by one

Ageing bodies

First, when we think about ageing in the body, it is important to remember that impairment comes to us all if we live long enough, more commonly to women than to men because they normally live longer It is part of the normalcy of old age, a biographical norm for people who live longer So, as we have an ageing population, we find more people are living with impairment And yet somehow

we often do not see older people as being disabled, a phenomenon which is explained by some commentators in terms of this idea of normality

body

identity

structure

culture

The Sutherland Report on long-term care in Britain highlighted this as follows:

Younger people must try to negotiate their lives while disabled andwhen the vast majority of their peers, who set the standards of normalbehaviour, are able-bodied By comparison, as 7 in 10 people aged 80

or over have some level of disability, being unable to do some things

or needing help with others is a common and anticipated experience.This perception may be behind the differences in the policy approach

to supporting younger and older disabled people, both in service termsand financially (Sutherland 1999, para 9.7)

So when we see an eight-year old child in a wheelchair, we see this as a disability issue It’s unusual, and we need to do something about it If, however, we see an eighty-year old person in a wheelchair, we just see her as old In policy terms there is a tendency not to see that person as a disabled person with disability rightssimilar to those of a disabled eighteen-year old or a thirty-year old

Ageing identities

Second, in terms of identities, disability affects people in different ways

Disability has been described as biographical disruption, as something that

interrupts normal life We imagine our lives to be without disability, and if it happens it is somehow disruptive On the other hand we understand that disability

is part of normal ageing, so there is some conflict involved

The idea of ‘successful ageing’ has become increasingly popular, with the

implication that successful ageing includes avoiding impairment, a perspective which raises real questions for older people who are also disabled Is it possible toage successfully in the eyes of policy-makers and also be a disabled person? Is it only non-disabled people who can age successfully? Is disability ‘normal’ in old age, and thus less disruptive to older people than to adults or children? I would say no, yet we somehow assume that people do not need the same disability rights

in old age

Culture and old age

Thirdly, in relation to culture and the way our society treats disabled people and older people, we have tended to see older people as a group apart requiring

separate structures and service delivery systems There have been strong

challenges to segregated institutions in relation to disability In a 1972 study of younger disabled people in Britain, the authors argued that the result of

committing young people to segregated institutions, was to separate them from thenormal life of society, and thus to define them as in effect 'socially dead' (Miller and Gwynne 1999, p.371) Yet we continue to pursue policies of institutional segregation for older people with impairments, perhaps more so in Britain than in Ireland, reflecting the view that older people too are a group disengaged from normal society, and effectively ‘socially dead’

We have seen new cultural challenges to this view of old age: the movements for successful ageing and active ageing, the movement of the Third Age and so on, which challenge the idea of the older person as dependent or vulnerable, and provide instead an image of ageing which is powerful and positive

But this is also an image which seeks to distance ‘successful ageing’ from the image of disability, from impairment, and thus tends to marginalise disabled people There are winners and losers in that kind of strategy To quote Andrew

Blaikie, a well-known writer on older age,

While the phase of active adulthood expands to embrace more andmore seniors, stronger taboos form around those in poverty, thosewhose pastimes lack strong cultural resonances, and those sufferingfrom disability and disease

(Blaikie 1999, p.253)

So policies for ‘active ageing’ have brought more older people into a respectable kind of adulthood, where we see them having rights and social inclusion as active consumers, yet we distance ourselves more and more from people who are very old, and from people who have the most severe impairments

Structural approaches

The fourth and final way of looking at ageing is in structural rather than cultural terms What is it about our economy that creates groups of older people and disabled people?

There are similarities between the two groups In the literature we have come increasingly to look at generations as being in conflict, observing tensions

between adults and older people, between adults and children We have started to see generational groups almost as classes And we find that disability policy in Britain and in the EU has been mainly focused on labour force issues,

concentrating on getting disabled adults off welfare and into work European discrimination legislation on disability at the moment effectively only applies to occupational discrimination for those of working age

In a sense both disabled people as a social group, and older people as a social group, are defined as those who are exempt from the labour force, either through retirement, or through somebody’s judgment that they are unable to work In mostcountries of the world the official policy definition of disability is ‘unable to work’ Both disability and old age result in a life without work, and policy is focused on making this a meaningful life without work The British disability theorist Mike Oliver has argued that

Both ageing and disability are produced as an economic problem Thepolitical economy perspective points to the structural dependency…Inother words, old people no longer play a key role in the process ofproduction and no longer participate in the labour market The same istrue of disabled people and has been so, except in times of severe

labour shortage, since the time of the industrial revolution.

(Oliver 1993, p.253)

From this point of view, the dependency we associate with old age and with disabled people is fundamentally economic rather than social, and that is why it creates a policy problem If people are economically dependent as a group, the State has to pay for them, whereas if people can pay for the support they require then few policy problems are posed

Disabled people are marginalised from the pattern of life, work, and retirement Tony Holland, who has worked extensively on issues for people with learning

difficulties, argues that

For most of the population life is structured into infancy, childhood,working adult life and retirement For people with learningdisabilities, many of the expectations that people have of life are notavailable The most striking example is work…Without work or itsequivalent there can be no retirement

(Holland 2000, p.30)

This perspective is strikingly illustrated by the question as to whether people are allowed to ‘retire’ from going to day centres or adult training centres when they reach retirement age, or whether they are obliged to continue ‘working’, unlike non-disabled people

Ageing and disability politics

We are now beginning to see a new image of ageing, with older people claiming their rights in a more political way In this respect, older people’s groups and disability groups have a lot in common Peter Vincent, however, who has written extensively on old age, suggests that

From the point of view of those advocating older people’s interests,the disability movement may seem like a model of self-advocacy…However, there are a number of problems for older people followingthis route and doubts have been expressed as to whether disabledpeople are an appropriate comparison Certainly, many associated withthe Third Age movement have sought to disentangle the image ofelderly people from illness and disability

(Vincent 1999, p.93)

We have found in Britain that self-advocacy groups of older people have tended todistance themselves from the imagery of disability, which may be seen as negativeand as emphasising dependency, as opposed to ‘active’ or ‘successful’ ageing And

at the same time we have seen the independent living movement presenting active and successful images of adult disability, which appears to distance young

disabled as much as possible from old age, because they too do not want to be associated with images of dependency

And yet these two groups have a lot in common Research on older people’s organisations and disability organisations suggests that both campaign on very similar issues These include: information and advice; independent living;

community living; accessible housing; mobility and transport; isolation and social contact; employment and life long learning; incomes; and health and social care

Finally, some of the questions we need to ask as a basis for future cooperation are:

• How similar are the political concerns of older and disabled people?

• Why is it that older people with impairments are not seen to have

disability rights in quite the same way that younger disabled adults are?

• What are the barriers to greater political alliance between movements of older people and movements of disabled people?

• What is stopping us from working together on issues where we share a common cause?

Priestley, M (ed.) (2001) Disability and the Life Course: Global Perspectives,

Cambridge, Cambridge University Press

Priestley, M.(2003) Disability: a Life Course Approach, Cambridge, Polity

Press

Sutherland, S (1999) With Respect to Old Age: Long Term Care – Rights and

Responsibilities: A Report by the Royal Commission on Long Term Care,

London, Stationery Office, Cm 4192-I

Vincent, J (1999) Politics, Power and Old Age, Buckingham, Open University

Press

Discussion (1)

Eibhlin Byrne as Chair concluded the first session of the seminar by thanking Mark Priestley for his presentation, and noting how it highlighted the importance

of the choices facing Irish society in relation to age and disability

She then invited comments and questions from the floor in the few minutes remaining, and two participants addressed matters raised by Dr Priestley

The effects of economic growth on services and on inclusion

First, a speaker from the floor commented on the unequal and market oriented nature of the society in which we live, in which both age and disability are seen aslow on the agenda The Madrid Declaration may have spoken of health, security and employment for all in society, but in Ireland we are facing a crisis in these areas, with very inadequate resources made available

Dr Priestley responded by noting the way in which economic growth in Ireland is putting pressure on the social infrastructure, with the result that it becomes a higher priority for the government to address the perceived dependency of older people and disabled people In Britain there is strong pressure on the government

to take measures which encourage as many as possible to return to the work force and come off incapacity benefits, so many who might otherwise have been

perceived as disabled or old are no longer seen as such

This tendency puts increasing pressure on those who are very old, or very

disabled, and who are at risk of losing out in terms of resources and equal

citizenship There is thus a real danger that, in campaigning for what is possible interms of inclusion, the most vulnerable groups of people may be left behind

The UK National Service Framework for Older People

A speaker from the floor asked whether those with disabilities, including learning disability, are included in the standards laid down in the UK by the National Service Framework for Older People

Dr Priestley responded that, having been involved in those discussions only in a minor way, he could not be certain of the answer He had not seen older people with learning difficulties or intellectual disability represented in the discussions, but he was sure they would be included in the framework of standards

SESSION TWO

AGEING WITH A DISABILITY AND

DISABILITY IN OLD AGE:

PARTICIPANT EXPERIENCES

The four groups of seminar participants were asked to address the following questions:

1 Are there policy or practice areas that you want to

identify as of concern for people who are ageing with a disability or who experience disability in old age?

2 What specific issues arise in those areas?

3 Specifically, in terms of health and social care services,

what issues arise in responding to people who are ageing with a disability or who experience disability in old age? Reports from the four groups follow.

Report of Discussion Group A

Facilitator: Olga McDaid Rapporteur: Michelle Donnelly

Policy and practice areas of concern for people ageing with a

disability or who experience disability in old age:

Three key policy and practice areas of concern for this group were:

• Participation and consultation

• The built environment: access for all

• Integration and harmonisation of services

Specific issues in those areas:

Participation and consultation

• There is a need for individualisation of care, to make services and support more person-centred

• There is a need for the provision of clear information on services in a timely and accessible manner that meets the changing needs of people as they age

• There is a lack of consultation in relation to the development of policy in both the disability and ageing sectors However, it was noted that at present consultation with the disability sector, where organised high-profile groups are contributing to the development of policy and practice,

is better than that with the ageing sector

• Efforts should be made to get the views of all older disabled people, especially those with serious difficulties, about their own care preferences Too often in the past, decisions have been made for them, not with them or

by them

• The hard of hearing are a particular group whose concerns and issues havenot been taken on board by the planners and providers of services

The built environment

It was felt that Irish towns and cities have only paid lip service so far to the Barcelona Agreement They have the power to enforce regulations and standards

on access under their own Development Plans, without waiting for the deadline of

2015 in the Disability Act.

There are specific issues of concern in relation to access for the ageing population and people with disabilities, including:

Integration and harmonisation of services

Under this heading, the following concerns were noted:

• The rigid distinction between older people’s services and disability

services has a negative impact on access to and provision of services to people who are under 65 but require older people’s services, for example those with early onset dementia

• On the other hand, social workers experience difficulties in making

appropriate referrals of people with disability who are over 65, because therelevant expertise is often to be found in the Disability Service, rather than

in older people’s services

• Overall, there is a lack of coherence and consistency in services for the under-65 and over-65 age groups with disabilities, with regard to funding mechanisms and eligibility criteria

• There is too much variation in services across HSE areas, because of the discretionary aspect of provision The Irish Wheelchair Association found there was great flexibility regarding funding for them to continue

supporting people after age 65 in some areas but not in others

• There is fragmentation of services and a need to integrate such services formaximum benefit to the user Efficiency as well as person-centredness would be served by establishing single points of contact for the service user

• Information about services provided by the HSE and different GovernmentDepartments must be clear and consistent, and provided in a timely and accessible way The full range of options is not always made clear to people needing services

Also in relation to integration and harmonisation of HSE services for older

people, the group noted key developments in community-based care which need

to be expanded and built on:

• Community teams now being initiated in a drive to better integrate service provision;

• New case management systems using key workers, which involve

families, friends, and the whole circle of support of people with

disabilities

In relation to integration of services, European models could usefully be

considered, for example provision in Sweden and the Netherlands, where a

residential home and day care centre share the same site and facilities, so people can move easily from one to the other and maintain friendships, and where the same nursing staff operate in the care home, day centre and in the community

Issues in terms of health and social care services’ responses to

people ageing with a disability or who experience

disability in old age:

The following issues raised concerns:

• There is a need to harmonise and enforce standards among service

providers

• The allocation of resources, as between Direct Services Provision and the giving of financial resources to individuals to enable them to choose their own care This is an issue for both the providers and the recipients of services

• The lack of a national consensus and uniform policy on the direct

payments scheme This means that mechanisms for people to choose their own care are available in some areas of the country but not others at present

• The need for recognition by service providers of the role of advocates in enabling individuals to make informed choices about their own care, especially in the context of the direct payments scheme

• Isolation and social contact, with particular reference to the location of care centres and nursing homes outside urban areas and out of reach of public transport, cutting individuals off from family contact, from the communities in which they have lived, and from opportunities for their own personal development

Two final points were made by participants in this group:

First, raising awareness across the generations, and particularly with young people

in school, about older people and people with disabilities, is essential Second, it

is crucial to remember that human rights are at the heart of all of the ageing and disability issues covered in the discussion

Report of Discussion Group B

Facilitator: Sarah Delaney Rapporteur: Rosarie McCarthy

Policy and practice areas of concern for people ageing with a

disability or who experience disability in old age:

Differences of access between the two groups

• The 2005 joint project on women and disability, organised by the Older Women’s Network (OWN) and Irish Wheelchair Association (IWA), showed up the differences in access between those ageing with a disabilityand those who acquired a disability in later life

• Those with acquired disability were envious of those who had links to the IWA They did not have the same degree of knowledge as to how to accessinformation and services On the other hand, those with early onset

disability ran the risk of being ‘ghettoised’

Provision of information for those with acquired disability

• It was agreed that information is the biggest issue, especially for those who acquire a disability with age In the case of early onset, those

concerned are known to the services as their needs have been identified early on In the case of an acquired disability, it is much harder,

particularly where the person concerned may need to move home or adapt their current housing

• It is important to have a ‘hospital to home’ approach, with hospitals making relevant information available to people with disabilities at the point of discharge

• It was noted that the Centre for Independent Living is working actively on the whole issue of information

Addressing deficiencies in policy and provision for deaf people

• A participant from the Irish Deaf Society observed that, whilst there had been many positive developments for the elderly deaf, most policies in relation to deaf people were simply tacked on to other policies, so there was no coherent policy structure

• It was agreed that deafness is the impairment least included in policy There is also little recognition of the actual experiences of older deaf people

• Information is based on an inappropriate medical model of services, while

in fact deafness can be very socially excluding, and those who acquire deafness need access to information on social issues and accessing social and cultural activities

Recognising the decision-making capacity of people with disabilities

• It was observed that from a policy perspective, there is a lack of

recognition regarding the capacity of people with disabilities There is no legal basis for autonomous decision-making about their own lives and care, with the result that people are excluded from the process This needs

given on a discretionary basis, without there being any entitlement per se,

and that this must change A rights-based approach must inform service delivery across the country

The impact of the Disability Act

• The question was raised as to how the Disability Act will enable people to

exercise their rights and how it will address the needs of older people with disabilities

• As of now, it is not clear what the outcomes will be Some organisations, such as the Alzheimer Society of Ireland, will be monitoring it very

closely to see how it impacts on specific groups of older people acquiring disabilities

Strengthening advocacy

• While healthy older people have their voices heard, a voice needs to be given to older people with disabilities The disability rights movement should engage with a broader range of people with disabilities, including the most marginalised and least ‘visible’ groups such as those with

cognitive disabilities

• Advocacy programmes would be an important step forward, but they must not detract from the ability of people to take action for themselves

Legal issues and definitions

• The issue of legal definitions was discussed For example, what is the legaldifference between impairment and disability? No-one in the group was aware of a definitive answer to this question

• One participant saw the fact that some groups of older people do not want

to be associated too closely with the concept of disability as a strong argument for establishing clear legal definitions

• However, the view was also expressed that it can be dangerous to define things too closely, as a legal definition might be too confining, for instance

in terms of age-divisions

• What is needed instead is greater mutual respect in society at large (as in Canada, where the young are taught to respect older people), and attention

to individual needs

Issues in terms of health and social care services’ responses to

people ageing with a disability or who experience

disability in old age:

Overall lack of resources

• There was a consensus that the biggest issue here is the lack of resources Even very basic services may not be available and, compared to the UK, there is a marked lack of specialist services for both groups

• Lack of resources prevents the development of the person-centred, holisticservices and community care that are required

Lack of home care

• The lack of home care, which is crucial for both groups, was highlighted Many families who look after people with disabilities get no concessions

at all from the Health Boards

Gaps in home help service

• This was mentioned briefly in a comment on inconsistencies in the

provision of home help services in different parts of the country

Gaps in services for deaf people

• Advocacy services for the deaf are developing at national level, but as yet there is no country-wide advocacy service

• There are five thousand deaf people in the State using Irish Sign Languagebut the provision of Irish Sign Language interpretation services is largely confined to Dublin It must be extended nationwide

Age cut-off points

• The quandary around the cut-off point of 65 is a major issue

Chronological age is not an appropriate indicator for services For

example, if one is 60 years old with dementia, the services are not

appropriate

Lack of welfare benefits for people with disabilities

• It was noted that there is a lack of welfare benefits for people with

disabilities, especially for older disabled people who do not work, as the welfare system follows age cut-off points in many respects, such as the mobility allowance As a result, they experience poverty in their old age

Report of Discussion Group C

Facilitator: Marion Wilkinson Rapporteur: Sinead Quill

As their discussion developed on the lived experiences of those ageing with disability and those acquiring disability in older age, this group found their responses to all three questions were closely inter-related

So their report is framed as a set of recommendations on developments which this group considered essential to improve the lives of older people with disability, with some examples and additional comment

Developing existing disability databases to plan for an ageing population

• There is a need to develop existing disability databases to incorporate older people who acquire a disability after the age of 65 This will

facilitate planning processes and, ultimately, service delivery to meet the needs

Creating mechanisms for seamless cross-over and linkages between disability services and older persons’ services.

• When a person with a disability turns 65, they are in theory supposed to beaccommodated by older people’s services In practice, this rarely happens and disability service providers are then stretched to provide services to two client groups The chronological age cut-off also militates against accessing services for those over 65 who acquire a disability

• There is a need for a seamless crossover between services for people with disabilities and services for older people Services must be person-centredand based on need not age

• This issue must be tackled at the political level given that, in practice, many providers of disability services will continue to provide services after a client turns 65 years Generally, they will not, however, take on newclients that are aged over 65 years – the resources are unavailable

Establishing a rights-based approach to services

• There is a need for a rights-based approach for accessing the services that will improve people’s lives, and this should be built into legislation

• As part of the legal framework, an Ombudsman for older people should beestablished

• There is a recurrent difficulty in accessing community-based services when eligibility is discretionary and there is no automatic entitlement Services such as Meals on Wheels and Home Helps were highlighted, both

in regard to eligibility and in regard to adequacy (for example, lack of year-round coverage when services are provided by voluntary