FINAL TEXT 27 MARCH 2006

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

Seminar Proceedings: The Interface between Ageing and Disability

CONTENTS

Introduction1

OPENING SESSION: AGEING AND DISABILITY

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

Introduction to the Joint NCAOP/NDA InitiativePatricia Conboy5

Mapping Issues for Policy and Practice in the Irish SettingShari McDaid8

Adopting a Life CourseApproach to Ageing and DisabilityDr Mark Priestley16

Discussion (1)23

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 discussions24

THIRD SESSION: PANEL FORUM

Chair: Siobhan Barron, Acting Director, National Disability Authority

Ageing and Physical DisabilityDr Ken Mulpeter39

Ageing and Intellectual DisabilityDr Mary McCarron42

Ageing and Mental HealthDr Margo Wrigley49

Older People with Disabilities and Assistive TechnologyGerry Ellis54

Discussion (2)58

CLOSING REMARKS

Siobhan Barron, Acting Director, National Disability Authority60

Bob Carroll, Director, National Council on Ageing and Older People62

Speakers and Chairs64

Seminar Participants66

1

Seminar Proceedings: The Interface between Ageing and Disability

Introduction

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-statutory service 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 a draft 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 was organised in three sessions:

Opening session

The opening plenary session provided an overall context and focus for the work of the seminar. It was addressed by three speakers involved in policy and research on the 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 respondingto 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

In2005,theNationalCouncilonAgeing andOlderPeople 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, thatis, designed to respond to the needs of individuals rather than to the labels that are assigned to them.

Census2002

ThefindingsofCensus2002indicatetouswhyan age friendlysociety must be a disability friendlysociety, because it shows that 11 per cent oftheIrishpopulationisaged65yearsandover. Ofthat 11 per cent, morethan one thirdexperience disability asdefinedbythe Census, andthe overallfindingsdemonstratetheincreasingoccurrenceofimpairmentaspeopleage.

The Censusfindingsflagtousarealityandarequirementforstrategicplanningandaction, interms ofthesheernumbersofpeoplewhoseneedsrelatetobothageinganddisability.

Common and divergent interests; developing new approaches

The Census findings also suggested to theNationalCouncilandtheNational Disability Authority that there may be areas ofcommoninterestbetweentheageinganddisabilitysectors, though we recognise that there will also be areas of divergence between us.

So we havecometogetherto begin to mapoutthoseareasofcommon and divergent interest, and todeveloprecommendedapproachestopolicyandpractice, in the interests of people with disability and people who are ageing.

The Irish context

AllofthisrepresentsaconsiderablechallengeintheIrishcontextwhere:

  • Therearetwopopulationgroups,thosewithearlyonsetdisabilitywhoareageing, andolder peoplewhoexperiencethelateonsetof disability;
  • TheIrishhealthandsocialservicescategoriseolderpeopleandpeoplewithdisabilitiesastwodistinctclient 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 meetthischallenge,theNationalCouncilandtheNationalDisabilityAuthorityhaveundertakenajointproject in threestages:

  • Thefirst was aliteraturereviewontheinterfacebetweenageinganddisability. 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 wehope tohear the views of people in the ageing and disability sectors in relation to these findings, andtoensurethatourjointwork on policy and planning will be informedbytheissuesandconcernsofpeople‘ontheground’withdirectexperienceof the realities.
  • Following the seminar, the third stage will be thedevelopmentofa joint policypositionpaper,in draftandfinal versions, thatwillsetoutthesharedrecommendationsoftheNationalCouncil on Ageing and Older People andtheNational Disability Authority onpolicyapproaches toageinganddisabilityintheIrishsetting.

Situating the project

Finally, in order tosituatethejointproject, I want to indicate again the scale of the challenge, by referring to the experience of the Council indevelopingapositionstatementontheagefriendlysociety. Weidentified the barrierstothecreationofsuchasociety, 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, theNationalDisabilityAuthorityhasaddressedbarrierstotheparticipationofpeoplewithdisabilitiesinIrishsociety, similarly highlightingissuesof discrimination,inappropriatemodelsand concepts, and specific issuesofpolicyandpractice.

So we have two sectors that have worked mainly in parallel. Perspectives, concepts, models, language have differed. Ourtask now istoforge from those diverse perspectives the commongoals 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.

Thatiswhatyou,throughyourparticipation in thisseminar, arehelpingustodothismorning.

Mapping Issues for Policy and Practice in the Irish Setting

Shari McDaid, Policy and Public Affairs Advisor, National Disability Authority

[Note: the presentation was illustrated by a series of visual images, which are not included here. Some of them are referred to in the text.]

This presentation is based on the Discussion Paper on Ageing and Disability which you have before you this morning. The Discussion Paper is very much a joint piece of work, and I want to thank Patricia for all her assistance in its 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. Butthe 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 cent experiencing 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 twothirds experience more than one kind of disability or restriction, and the incidence of multiple restrictions rises with age.

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 in old age.

Some commentators argue that there are distinct issues for people with early onset disabilities. 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 with early 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, there are also good reasons to think in terms of common ground.

Comparison of theUN Principles for Older Persons (1999) with theUN 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). Bothdocuments 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 has gone 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, or life 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.