the interface between ageing and...

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

Introduction 1

OPENING SESSION: AGEING AND DISABILITYChair: Cllr Eibhlin Byrne, Chair, National Council on Ageing and Older PeopleIntroduction 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

Discussion (1) 23

SECOND SESSION: AGEING WITH A DISABILITY AND DISABILITY IN OLD AGE – PARTICIPANT EXPERIENCESChair: Cllr Eibhlin Byrne, Chair, National Council on Ageing and Older PeopleReports from small group discussions 24

THIRD SESSION: PANEL FORUMChair: Siobhan Barron, Acting Director, National Disability AuthorityAgeing 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

Discussion (2) 58

CLOSING REMARKSSiobhan Barron, Acting Director, National Disability Authority 60

Bob Carroll, Director, National Council on Ageing and Older People 62

Speakers and Chairs 64

Seminar Participants 66


IntroductionOn 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 ProceedingsThe 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 sessionThe 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.

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Second sessionIn 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 sessionIn 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 sessionFollowing 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.

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OPENING SESSION

AGEING AND DISABILITY

Chair: Cllr Eibhlin Byrne

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Opening of the SeminarCllr 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.

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Introduction to the Interface between Ageing and DisabilityPatricia Conboy, Policy Officer, NCAOP

IntroductionThis 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 societyIn 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.

Census 2002The findings of Census 2002 indicate to us why an age friendly society must be a disability friendly society, because it shows that 11 per cent of the Irish population is aged 65 years and over. Of that 11 per cent, more than one third experience disability as defined by the Census, and the overall findings demonstrate the increasing occurrence of impairment as people age.

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 approachesThe 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 contextAll 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;

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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 projectTo meet this challenge, the National Council and the National Disability Authority have 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 the National Disability Authority on policy approaches to ageing and disability in the Irish setting.

Situating the projectFinally, in order to situate the joint project, I want to indicate again the scale of the challenge, 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 of policy and practice.

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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.

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Mapping Issues for Policy and Practice in the Irish SettingShari 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. 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 disabilitiesTo 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 two thirds experience more than one kind of disability or restriction, and the incidence of multiple restrictions rises with age.

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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 groundThese 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 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

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

Thinking about ageing: the life course approachFirstly 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.

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The social model of disabilitySecondly, 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 dependencyThirdly, we can consider the concept of dependency. Recently, Good and Fitzgerald (2005) drew a distinction between ‘necessary dependency’, which is an integral 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 issuesOne of the significant impediments to addressing ageing and disability in Ireland is the lack of available data. The NCAOP has highlighted the lack of person-centred data on older people. For example, the National Physical and Sensory Disability Database excludes persons whose disability arises from age 66 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.

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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 supports are 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 time the baseline data required by policymakers and service providers.

Where are we at now in Ireland? (2) Issues relating to servicesIn 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 organisationHistorically, 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 careRelative 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 attitudesWe 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 careIreland 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 increase in the population of the oldest old and of older people with long-standing

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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 planningPerson-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.

ConclusionIn 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 and lesbian 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.

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Today’s seminar provides an opportunity for you to consider all of these in light of your 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.

ReferencesAmerican 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.

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http://www.cailc.ca/CAILC/text/whatisil/intro_e.html


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.

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Adopting a Life Course Approach to Ageing and DisabilityDr Mark Priestley, Centre for Disability Studies, University of Leeds

[Note: this presentation was illustrated by a number of photographic images of older people and people with disability, which are not included here.]

IntroductionThank you for inviting me here to talk about the important topic of the interface between ageing and disability. The Irish authorities have been among the first to address this in a purposeful way, and your agencies are to be congratulated on what you have done in this respect.

Defining disability: individual and social modelsIn 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 the problem, and therefore the person that has to be changed, through treatment, therapy, rehabilitation, or indeed by preventing such people from being born in the first 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 disabled people’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 disabilityOne 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 issues equally 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.

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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 as something 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 modern societies, 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 outside normal adulthood.

Disability and the Life Course

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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 ageingThe 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 bodiesFirst, 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.

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

Younger people must try to negotiate their lives while disabled and when the vast majority of their peers, who set the standards of normal behaviour, 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 terms and 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 rights similar to those of a disabled eighteen-year old or a thirty-year old.

Ageing identitiesSecond, 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 to age 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 ageThirdly, 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 the normal 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.

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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 and more seniors, stronger taboos form around those in poverty, those whose pastimes lack strong cultural resonances, and those suffering from 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 approachesThe 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 most countries 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. The political economy perspective points to the structural dependency…In other words, old people no longer play a key role in the process of production and no longer participate in the labour market. The same is true 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.

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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 learning disabilities, many of the expectations that people have of life are not available. The most striking example is work…Without work or its equivalent 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 politicsWe 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 following this route and doubts have been expressed as to whether disabled people are an appropriate comparison. Certainly, many associated with the Third Age movement have sought to disentangle the image of elderly people from illness and disability.(Vincent 1999, p.93)

We have found in Britain that self-advocacy groups of older people have tended to distance themselves from the imagery of disability, which may be seen as negative and 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.

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ConclusionFinally, 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?

ReferencesBlaikie, A. (1999) Ageing and Popular Culture, Cambridge, Cambridge University Press.

Holland, A. J. (2000) ‘Ageing and learning disability’, British Journal of Psychiatry, 176, pp.26-31.

Irwin, S. (1999) ‘Later life, inequality and sociological theory’, Ageing and Society, 19 (6), pp. 691-715.

Oliver, M. (1993) ‘Societal responses to long term disability’, in G. Whiteneck, S. Charlifue, K. Gerhart, D. Lammertse, S. Manley, R. Manter and K. Seedroff (eds.), Ageing with Spinal Cord Injury (pp. 251-262), New York, Demos Publications.

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.

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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 inclusionFirst, 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 as low 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 in terms of inclusion, the most vulnerable groups of people may be left behind.

The UK National Service Framework for Older PeopleA 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.

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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.

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Report of Discussion Group AFacilitator: 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 have not been taken on board by the planners and providers of services.

The built environmentIt 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.

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

Dishing of footpaths;

The level of the push button facility at pedestrian crossings;

Improvements in housing;

Problems in the regulations for auditoria, which impact on the hard of hearing;

Taking in charge of private housing developments. New estates are still being built without wheelchair accessible footpaths. It should be mandatory that local authorities would not take new developments in charge until they meet accessibility requirements in full;

Full implementation and enforcement of all planning regulations and relevant legal provisions. It was suggested that the Northern Ireland framework of regulations on access, which is more developed than that of the Republic, could offer useful comparisons and models.

Integration and harmonisation of servicesUnder 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 the relevant 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 for maximum 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 Government Departments 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.

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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.

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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 disability and 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 access information 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.

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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 to be addressed urgently.

Specific issues in these policy and practice areas:

Lack of rights The issue of rights was raised a number of times. It was observed that,

especially in the context of community care, information and supports are 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 legal

difference 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.

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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.


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, holistic services 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.

Transport issues Public transport was also a key issue, particularly affecting the access of

people with disabilities to social activities.

The positive impact of the Integrated Rural Initiative in West Cork was cited as a valuable example, bringing people together by integrating the work and activities of different social centres. The older people using it were very satisfied with it.

Personal Assistants On the principle that people with disabilities should be involved in making

decisions about their own lives, it was suggested that people with disabilities should have direct funding for employing their own Personal Assistants.

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 Language but the provision of Irish Sign Language interpretation services is largely confined to Dublin. It must be extended nationwide.

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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.

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Report of Discussion Group CFacilitator: 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 be accommodated 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-centred and 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 new clients 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 be established.

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 organisations).

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The lack of consistency and equity in service provision across the country was noted as a serious issue, necessitating a rights-based approach.

Building strong advocacy services for older people There is a critical need for advocacy groups and services for older people,

particularly given that many are of a generation that is widely recognized as being undemanding and deferential to authority. It was noted that the HSE is working with some of the voluntary organisations on this.

It was agreed that disability groups are traditionally well organised in this respect and could act as a model for the development of older people’s advocacy groups.

Challenging the meaning of ‘old age’ and standardised age boundaries There is a need for society to challenge what is meant by ‘old age’. It was

felt by some that 75 years would be a more realistic cut-off age.

The specific case of those aged between 60 and 65 who have suffered stroke-related disability was noted. They often fail to receive appropriate older people’s services which would suit their needs.

The question was also raised as to ‘how old is old?’ for people with intellectual disabilities.

Supporting carers Carers of older people with a disability need to be supported, as they are

often a forgotten voice in the current debates.

Planning and preventative care There should be more focus on preventative care for older people and on

discharge planning, where necessary.

There is a need for individuals themselves to plan for old age, for example in relation to adapting their houses for optimum mobility.

Measures to combat social isolation of older people Social isolation was noted as an issue of particular concern for the two

groups of older people. All older people should be facilitated to participate in society, not forced to withdraw because of lack of appropriate support services, the location of long-stay care facilities etc.

There is a need to encourage intergenerational solidarity, because society loses as a result of the absence of older people. For them there can be a loss of the sense of belonging to something bigger.

The ‘Netherlands model’ – where a nursery, long-stay centre and day care centre for older people are all in close proximity on the same site – was recommended in this respect.

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A ‘one-stop shop’ approach to accessing services

There is a need for more flexibility in services. Older people should not have to try to negotiate all their own services, dealing with many different providers in relation to their various needs. Instead, a ‘one-stop shop’ mentality should be adopted by service providers.

Funding for community-based support services It was emphasised that most older people want to remain at home, but that

this is made difficult because of a perceived lack of commitment to funding posts to support care in the community.

Services will need to move beyond a 9 to 5 availability, in order to meet people’s real needs. Involving older people in the design of services will be vital.

One specific issue that was highlighted in relation to community-based care was the problem of the Disabled Person’s Housing Grant, which can be difficult for older people who acquire late disability to access, and where there can be lengthy delays. The solution would be a grant specific to older people.

Also raised as an issue in this context was the need to include the provision of a personal alarm in the ‘package of care’ provided on discharge from hospital to an older person living alone.

A person-centred ethosOverall, there was a strong consensus in this group that the older population requires and deserves services that are person-centred, holistic, and above all based on individual need, not on administrative convenience.

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Report of Discussion Group DFacilitator: Shari McDaid Rapporteur: Liza Costello

Policy and practice areas of concern for people ageing with a disability or who experience disability in old age:

Three areas of major concern were identified: The range of Government Departments and agencies involved, and

the importance of acknowledging the role of agencies outside of the HSE in ensuring the social inclusion of those who are ageing with a disability or who experience disability in old age;

Lack of information, and in particular, the absence of a reliable database on the health status of all older people, which confounds attempts to provide accessible care;

The resources required to achieve an equitable service.

Specific issues in those areas:

Departments and agencies external to the HSEPlanning and provision must take into account those Departments and agencies external to the HSE which provide support. They include: a range of community and voluntary agencies; FÁS; and the Department of the Environment and local authorities in terms of their roles in providing accommodation.

A specific example where issues arise is the Personal Assistance Services programme provided by Community Employment schemes under FÁS. After the three year period, the service ends for the individual recipient of the service, who can face difficulty in adjusting to this.

Differing access to servicesA research project comparing older women who had acquired disability through accident or ageing with older women drawn from a more generic population found a significant disparity in terms of their access to and use of services. The former group ‘came through need’ and accessed services, whilst the latter were not accessing any services or seeing their Public Health Nurse.

It seemed that, for the group from the generic population, there was a stigma attached to using services, and a perception of a mindset which reasoned that they were ‘not in a wheelchair, therefore not disabled’. It was proposed that all older people should therefore be reviewed regularly.

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However, it was noted that nine years ago there was a register in place of all those aged 65 and over, with a provision that Public Health Nurses were to visit all those on it. This was found to be unworkable, and nurses ended up providing support where needed. There was a perception that those with no needs felt offended: ‘If an older person is well, they don’t want to think about illness.’


Bureaucracy in administrative systemsThe separation of services for people with a disability and for older people poses a large barrier to a holistic view of the service needs of older people. There are Disability Service Managers and Older People Service Managers, as well as regional and managerial levels. This causes a range of problems.

Firstly, though we are supposed to have a ‘unified health system’, this causes more levels of bureaucracy on the ground, and smaller organisations, which focus on one form of disability across the whole age range, do not have the capacity to deal with this. (This point was made by a representative from an umbrella body for voluntary organisations for people with disabilities.)

Secondly, this separation also causes difficulty for the person in receipt of services. For example, it was noted that in psychiatric services, once an individual reaches the age of 65, they have ‘graduated’ from their service and now must be catered for within services for older people, regardless of how comfortable and satisfied the individual may have been with their original arrangement.

Bridging this separation of services was seen as the challenge and the solution to these issues. It was agreed that the way health and social care services are delivered needs to be changed in this regard. Ultimately we need to reach a point whereby an individual is assessed on the basis of need.

Achieving equity in service deliveryThere was discussion of the ‘Care Packages’ provided to older people with physical and sensory disabilities on discharge from hospital. Some feedback was positive, particularly in relation to their person-centred, individualised approach.

However, it was noted that service delivery in both community and long stay care was not equitable, either across groups or geographically. Particular problems highlighted included the following:

There is a lack of equity between the care packages provided for people moving out of acute care and those for people seeking care while still at home.

In the placement of people with disabilities in nursing homes, the priority seems to be about getting a bed, rather than appropriate care for the person.

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People moving from an urban to rural setting can experience disappointment when they find local services are not able to cater for their needs.

Loneliness and isolation can occur in nursing homes. The social aspect is not included in service provision, and some people end up feeling bored and under-valued.

It is important that a political drive is created for equitable provision of care for older people.

Funding issues:Equity will be achieved only when sufficient resources are placed in service delivery, as this will allow mainstreaming of services.

The delivery of community care packages must not be provided only following a hospital stay, as this can promote the notion that going to hospital will lead to receiving more care.

The value of person-centred careThis approach was seen as very positive. The challenge that it presents to the future delivery of health and social care services is how to marry this aspect with a rights-based approach and equitable delivery.

Role of the Primary Care StrategyFinally, it was noted that any future development of health and social care services for older people should incorporate into it the Primary Care Strategy.

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SESSION THREE: PANEL FORUM

PERSPECTIVES ON AGEING AND DISABILITY

Chair: Siobhan Barron

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Ageing and Physical DisabilityDr Ken Mulpeter, Chair of Irish Society of Physicians in Geriatric Medicine

IntroductionThis morning’s discussion reflects to some extent the difficulties within the medical profession about how we deal with elderly and disabled patients. These difficulties revolve mainly around the practice of using age as a cut-off for service delivery and also the rigid division between separate services. I would hope in the next few minutes to illustrate some of the difficulties involved in delivering a comprehensive service to both elderly and disabled patients.

As a practising geriatrician, and not an academic, I care on a daily basis for people with heart attacks, lung disease, diabetes and arthritis, and much of my work is with people with neuro-degenerative diseases: blindness, deafness, stroke disease, Parkinson’s disease and dementia. It is important to remember that there is a wide spectrum of conditions in elderly patients with a particular predilection for neuro-degenerative diseases to cause disability.

What is a geriatrician?One could argue with some cogency that geriatricians should not really need to exist, and that the provision of a geriatric service could be seen as an inverse form of ageism. Historically, geriatricians came into being as a response to the perception that the elderly were not getting a good deal. But as geriatricians, we have some difficulty in saying what we actually do.

Some of us are involved in what one might call age-related care in that we take everybody over a certain age, which used to be 65, has now commonly become 75, and could perhaps become 85 or 95. Is there any sense to this?

Some other geriatricians would define their function in terms of needs, and concentrate their efforts on patients with particular needs, particularly frail patients and those with neuro-degenerative disorders, such as stroke or Parkinson’s disease, or patients with dementia. There are a small number of consultants in rehabilitation medicine in the country mainly dealing with traumatic brain injury and spinal injury and amputees.

However, the question remains as to how we deal with the broad range of disabilities in an adult population. Geriatricians tend to look after elderly patients with disability, but the question remains as to who should look after the younger population. Should this role also be filled by geriatricians or some other speciality? Do we need doctors to deal with patients with disability as a general category, or should we train all doctors in the management of disability?

From my own perspective as someone who works principally in hospitals, I would identify the following as issues to be discussed:

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What happens on the ground? Newspapers frequently refer in a derogatory way to ‘bed blockers’, particularly in large urban areas such as Dublin. But we have to remember that ‘bed blockers’ are essentially patients who cannot be sent home because of their disability.

In the hospital, it often appears as if the level of care is inversely proportional to the complexity of the disease affecting the patient. Patients with multiple diseases, who are disabled, probably do not get the same level of appropriate care as other patients. They do not fit easily into length of stay figures, and are difficult to categorise.

The care of the elderly and disabled is very service centred. You either fit into one service, or another service, not both. This is illustrated to some extent by my own experience in the last three years with the twenty-bed rehabilitation unit in the hospital where I work in Letterkenny. Although I am a geriatrician, in opening the rehabilitation unit it did not make a whole lot of sense to take only elderly patients, so we admit all patients on the basis of need rather than age. We admit all patients with stroke in the hospital. We also admit patients with traumatic brain injury, M.S., Parkinson’s disease and amputees.

It is in this work in the last few years that I have become aware of the degree to which age acts as a hindrance to appropriate care, as evident from the difficulties I have in trying to rehabilitate these patients and get them home. I spend hours upon hours trying to negotiate the hurdles placed in my way by the services that we have. Using age as a cut-off creates difficulties in dealing with disabled people of whatever age.

Another problem is that the level of service being delivered to a patient is commonly dictated by the service they fall into and in particular the level of resources that that particular service has (e.g. elderly care services, physical and sensory disability, mental health services or learning disabilities), rather than by carrying out a needs assessment on the patient and then finding out how this need can be addressed, if necessary taking resources from a number of different services. The primary focus should be on the patient’s needs and how to fulfil these rather than on the service or services themselves. For this to happen, the patient or their advocate must be empowered to dictate service delivery.

There is also an issue that was discussed briefly this morning, that of capacity in patients, of trying to do our best for elderly patients who have problems with cognition. If they cannot speak for themselves they tend to be forgotten. I have noticed in the rehabilitation unit that, no matter what age the patient is, the staff sometimes have to be reminded to address the patient’s particular needs rather than the family’s or the carer’s needs.

Different agendas for the ageing and disability sectors?Are there different agendas between the disability agenda and the ageing agenda? Ageing is not an impairment or a disability per se. If you take a group of eighty-year olds, they are likely to be more different among themselves than a group of twenty-year olds. Impairment or disability becomes more common as one ages, but ageing should not be defined in terms of disability.

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There is also the cohort effect. Currently, we are dealing with a cohort of elderly patients who have been reared in a certain culture, which makes them sometimes unwilling to take on the responsibility of making decisions about their own health care. You will commonly address an elderly patient and ask them what they want to do, and they will say ‘Whatever you think is best, doctor’. I would expect that my generation, when we reach our late seventies, would be more demanding of services than the current cohort.

I am also struck by the difference between patients who have acquired a disability at an earlier age, as opposed to those who develop it later in life. For instance, younger people with rheumatoid arthritis seem to me always to adapt better than somebody with the same level of disability, but who has developed it in an acute form in old age.

Medical versus social models of old age and disabilityWith regard to the issue which has been raised regarding the medical model and the social model, I think there is a danger that in adopting a social model, we could lose the political leverage to bring about change in our delivery of care. If I was to have a heart attack in front of you, I would hope to be rushed to the nearest hospital to get every care that is necessary.

In other words, patients with medical problems or a medical label are clearly entitled to services, but patients with a social definition of their disability may have difficulty in accessing services. In the case of disabled patients, we run the risk, if we move into the social sphere, that people are not seen as being entitled to the care that they need.

ConclusionEntitlement has been a common theme in our discussions, and a rights-based approach seems to be the best way forward.

We need to see the way forward as embracing both the ideas of an age friendly society and a disability friendly society. To achieve this, I think we really need to turn the service on its head.

It has been argued that one of the most important inventions of the last two thousand years is that of marketing. Our lives are now governed by the idea that you ask people what they want and you give it to them. I think we need to adopt that approach to the delivery of services for both the elderly and the disabled.

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Ageing and Intellectual DisabilityDr Mary McCarron, Acting Director of Research, School of Nursing and Midwifery, Trinity College Dublin; Policy and Service Advisor on Dementia, Daughters of Charity Service.

Introduction My task today is to address the policy and practice areas of concern for people with intellectual disabilities who are ageing, and the specific issues that arise in the provision of health and social care services.

Like the Discussion Paper itself, I would like to begin with the demographic challenges, and address the relevance of chronological age versus life stages, and then to situate the ageing of people with intellectual disability within the framework of ideas of successful ageing. I shall then take up issues of age friendly and liveable communities and by way of conclusion, argue for a conceptualisation of service provision for persons with intellectual disability that maximises access to generic services and yet recognises the value of specialist service provision and support for family carers.

The challenge of ageingRather than lamenting ageing, I believe we should be viewing ageing as a success story, and celebrating it, particularly in the case of people with intellectual disability. We must remember that back in the 1930s the average life expectancy for somebody with Down syndrome was nine years of age, whereas now people with Down syndrome can be expected to survive into their fifties and sixties or even beyond.

At the same time, we need also to recognise that we know very little about ageing, how to promote lifelong health, how to promote independence, how to postpone disability, and how to re-orientate services and develop sustainable services which will transfer into old age.

Demographic trendsChanging age profiles of people with intellectual disability

The changing age profile of people with intellectual disability has major implications for planning and the need for residential services is likely to continue.

The figures in the following table are taken from the Database on Intellectual Disability maintained by the Health Research Board and which collates information on people in Ireland who are in need or in receipt of services. It is argued that the database does not represent the total number of people with intellectual disability, as people who have never been attached to services may not be included, and these are likely to be a quite vulnerable category.

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Demographic Trends: Moderate Severe and Profound, 1974 - 2005

National Intellectual Disability Database 2005. Health Research Board Ireland

I would particularly like to draw your attention to the group aged 35 to 54 years. Back in 1974 that cohort represented 29% of the total intellectual disability population, whereas in 2005, that same cohort represented 47% of the total intellectual disability population.

So we can see that there is a growing trend of ageing of the population of people with intellectual disabilities.

Prevalence of dementia in people with Down syndrome and intellectual disabilityOne of the consequences of increased ageing is the susceptibility to age-related conditions, and particularly conditions such as dementia, which we are particularly seeing in people with Down syndrome, but amongst whom its occurrence is significantly different from that apparent in the population as a whole.

It is estimated that about 15% to 40% of people with Down syndrome over the age of forty years suffer from dementia, and, as can be seen, the prevalence of dementia increases quite significantly with age, with about 75% of the over sixties estimated to suffer from dementia. This is noticeably different from the situation in the population as a whole, where the corresponding figure would be between 4.3% and 8.3%.

In people with intellectual disability from other aetiologies the jury is out, but there is some concern that the rate of dementia is disproportionate in these instances too, with a risk of developing dementia about five times greater than in a similar age-matched cohort in the population as a whole (Cooper 1997).Others refute this however and suggest similar risk to the generic population (Zigman et al 2004).

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Prevalence of Dementia in People with Down Syndrome and People with Intellectual Disability

(Lai, F, Williams, R. 1989 Archives of Neurology, Cooper, SA 1997 JIDR)

Rethinking life stage models for people with intellectual disabilityThe incidence and timing of dementia is just one example where traditional age cut-offs are not appropriate for people with intellectual disability.

The difference in the demography of ageing of people with intellectual disability goes beyond life stage issues, and I agree with Chris Bigby and other commentators in the discussion document that there are distinct issues for people with early onset disabilities. People who enter the ageing process with an intellectual disability may have their primary identification as a person with a disability already established. They may have different life-experiences from people without established disabilities, fewer social supports, a lack of employment history, and fewer assets for retirement.

People with intellectual disability also often age within a system of care rather than independently of it. Additionally, for highly dependent people with intellectual disabilities, the loss of parental carers in midlife is likely to be a significant factor with a dramatic negative impact on their independence and care needs. And consequently, as Bigby concludes, perhaps issues considered pertinent to age care are largely irrelevant to many people with intellectual disability (quoted in NCAOP/ NDA 2006, p.36).

Implications of observed trendsThe impact of the trends I have outlined will be very significant:

Improved life-expectancy among adults within the ‘severe’ range of intellectual disability is going to pose new challenges to health-care professionals. Those who are ageing are likely to have more complex disabilities and, although the need for residential care may increase, increasing longevity will mean there will likely be fewer places coming free in existing settings through natural attrition.

Current services, both day and residential, will need to be re-designed, and a continuum of services to support ageing in place is required.

There is also a need for greater equity for people with intellectual

70%

23%15%

75%

55%

8%

0%

20%

40%

60%

80%

100%

35-49 50-59 60+ 65-74 75-84 85-94

Down Syndrome Non DS ID

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disability in accessing appropriate mainstream generic services for specialist support and expertise.

Major points of concern for people with intellectual disability will likely happen at different ages and in the context of different life experiences, compared to the generic ageing population. Different supports, and in some instances different services, may therefore be needed.

Finally, it is important that we do not stereotype either disability or ageing. People with intellectual disability are not a homogeneous group; some ageing related issues will arrive differently. Grouping people with an intellectual disability together without understanding the huge diversity of their individual experience is a matter for concern.

‘Successful ageing’ for people with intellectual disabilityI agree with the Council that older people should not be constrained by a single version of ageing, either by the deficit model, which sees old age as an illness without cure, or by the heroic model, in which we must maintain the appearance, capacity and perspectives of youth and middle age.

The Discussion Paper quotes Rowe and Kahn’s definition of successful ageing (NCAOP/ NDA 2006, p.5). However, Kahn’s most recent work has incorporated subsequent research, and has expanded his conceptualisation of key components of successful ageing. To paraphrase, successful ageing now includes:

relatively low risk of disease and disease-related disability;

relatively high physical and mental functioning;

active engagement with life, including close relationships with others and participation in productive activities;

acceptance of age-determined decrements and doing the best with what one has; and

application of external resources to enlarge the individual’s opportunities and facilitate behaviours that make for success in older age.

(Kahn 2002)

Such an expanded conceptualisation of successful ageing addresses the warning from the Council not to rely exclusively on a deficit or heroic model, and provides a view of successful ageing more inclusive of people with intellectual disability.

Liveable communities, ageing in place and ageing friendly communitiesAs noted in the Discussion Paper, supporting ageing in place for people who develop impairments means providing accessible environments and supports to allow them continue to live in their communities.

General adoption of the principles inherent in liveable communities will address many of the environmental barriers that make community housing less adequate for people with intellectual disability.

I wish to highlight the acknowledgement in the Discussion Paper that for persons with intellectual disabilities, ageing in place may mean remaining in disability-

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specific residential and community services. For some people, ageing in place means providing adequate ageing supports and care within the disability services.

In all cases the decision to ‘age in place’ should be made by the person with the disability. Persons with intellectual disabilities may therefore be better served within the intellectual disability services system, with specialist support and expertise from generic ageing services.

Informal and community supports to ageing in placeAs noted by the strategic planning working group on the development of services for older people with disabilities, persons with disabilities will benefit from services and service provision that include informal and genuinely community-based aspects, for example, support from neighbours, extended family, friends, churches etc. Lives are made richer and enhanced by these support systems, and informal networks act as a watch-dog for the well-being of older people. Also, the presence of these supports reduces the need for formal services.

However, making such successful provision of local supports more widespread will not occur without systematic planning.

Ireland is perhaps ready for such initiatives.

A vision of person-centred services for people with intellectual disabilityThe National Federation of Voluntary Bodies, in its 2004 report, emphasises the need for social inclusion and person-centredness as the vision underpinning services. They describe person-centredness as the principle which places the needs and wishes of the individual at the centre of the services, ensuring that these are designed, organised and provided around what is important to the service user.

The implementation of a person-centred approach for those with intellectual disability extends to looking at what is available in mainstream and community services, rather than limiting services and support to what is available within intellectual disability services alone.

The combination of generic services and specialist provision continues to be called for in old age and must also include support for carers.

Three key challengesGeneric services and age criteria

A key challenge in the provision of age associated services in health and social care to persons with intellectual disability is the barrier posed by the continued use of chronological age and ability eligibility criteria to access treatment, benefits or services.

For example, it may mean that a 45-year old person with Down syndrome who has developed dementia is denied access to generic mainstream services for expertise and advice and support. Conversely, it may also mean that a 66-year old person with intellectual disability is denied disability-related support because they are seen as part of the ageing services and not intellectual disability services.

Addressing such ageism and reverse ageism within the provision of health care is

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critical, and chronological age should not be used as a determining factor in terms of individuals gaining access to services or treatment.

The need for specialist provisionGiven both concerns about access to generic services and the unpreparedness of many generic practitioners for the unique needs of people with intellectual disabilities, there is a need for specialist services. Regardless of where services are going to be delivered, the following components will be needed:

specialist diagnosis and assessment;

multi-disciplinary assessment and clinical support;

comprehensive person-centred services;

maintenance of long-term intellectual disability service sponsored living arrangements;

provision of alternative living arrangements when family carers are no longer able or available;

advice on environmental modification;

staff and family education and training.

Support for family carersThe third challenge is of course going to be the support for family carers. For persons with intellectual disability, there must be recognition that just as a disability is not new, neither is caring, although for people with intellectual disability their older years may coincide with other changes in the family structure which provides care.

Old age, illness and increasing disability, whether of the person with an intellectual disability or of the carer themselves, may mean that caring situations face new stresses and that the age of carers will pose its own concerns. It is likely that there will be a need for new attention to the availability and the extent of the carer’s allowance, disability grants and in and out of home respite placements.

Critical final thoughtsIt is crucial to recognise that resources are needed to support changing service needs of people with intellectual disabilities already receiving care and services, not just to fund new services and new populations.

The increase in numbers of persons ageing, and the greater longevity of those ageing will mean a need for expanded provision for long-term accommodation, and for in-house supports for continuing ageing in place.

More is required. Ageing in place, successful ageing and quality care can be achieved through a new relationship between health, intellectual disability, ageing services and family carers, and through recognition that it is very important that what has been gained for people with intellectual disability in terms of community living and participation must be built upon and not given up.

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A new approach to care is also called for that recognises that ageing is an issue both for the person with an intellectual disability and for the carer.

Service providers for people with intellectual disability and service providers to the aged arena will therefore need to come together to redesign and implement care plans for all individuals residing in the household, respecting issues of self determination and being person-centred.

This kind of joint activity is not yet widespread, and redeveloping service cultures to support this approach will be a major challenge. Yet are we being honest in our efforts to support ageing in place, and quality of life for persons who are ageing with and without intellectual disability, if we are not willing to do things differently?

The future is now, and nothing will have a greater impact on the care of persons with intellectual disability in their ageing years than working together and instituting the knowledge we collectively have now to improve the quality of their lives.

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Ageing and mental health Dr Margo Wrigley, Consultant Psychiatrist and Clinical Director,Department of Old Age Psychiatry, Mater Hospital, Dublin

IntroductionBy way of introduction, I should explain what an old age psychiatrist is. Essentially, our specialty deals with older people who develop mental health problems in later life. The particular groups of patients we deal with are people with dementia who have behavioural or psychological aspects to their dementia, and patients with conditions such as depression which is particularly common in old age.

Setting the sceneI would like to emphasise that older people suffer the same range of mental disorders as younger people, although this fact is not widely appreciated. Some conditions are more prevalent the older you are, and dementia in particular is more common. As a result there is a tendency to assume it is mainly dementia that we are dealing with, whereas in fact it is a much broader range of disorders. The Irish prevalence rates replicate those found in other countries and show that depression at 13% of the over 65s is more than twice as common as dementia (5%), while schizophrenia, which in most cases starts in earlier life, affects 1% of this age group.

Moreover, some disorders which can occur in younger people would be better dealt with by specialist old age psychiatry services, but this younger group is precluded from access by the way in which these services are resourced.

The recent reorganisation of the health services under the aegis of the Health Services Executive means that in the particular population for which we care, there are three Care Group Directorates involved, which is not going to make things any easier. The Mental Health Directorate tends generally to focus on younger people with mental health problems. The Elderly Directorate appears to be more concerned with people who have physical health problems, and the Disability Directorate with those who develop their problems in earlier life, below the age of 65.

So there is a real risk that older people with mental health difficulties will find themselves marginalised.

Specific issuesI would like now to focus on a couple of areas that I think are particularly important.

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Early onset dementia

Early onset dementia refers to people who develop dementia in their forties and fifties rather than in later life. It has particularly tragic consequences for younger people because of the effects on themselves and their family. There are often young children involved, and the income of the family may be affected. Very often this group has forms of dementia involving major behavioural problems such as aggression, which make it very difficult for families to cope.

The service response itself is one of the biggest tragedies associated with this condition because there is no ring-fenced service response at all. This situation has been flagged by both the Alzheimer Society of Ireland and also by our Consultants in Old Age Psychiatry group (IACOAP). Both parties made strong representations to the recent Expert Group on Mental Health Services, whose report was published just two weeks ago. Sadly, our representations were ignored and little was said about the condition.

The complex needs of ‘graduates’The second group of people I would like to highlight are called rather euphemistically ‘graduates’. These are older people with enduring or recurrent severe mental illnesses with an onset usually in their twenties or thirties. The term refers particularly to people with schizophrenia, but there are also substantial numbers who have severe mood disorders like mania and depression, which are recurrent in nature.

The term ‘graduates’ comes from the fact that often these patients were looked after in mental hospitals, and, as it were, ‘graduated’ out of them with the closure of mental hospitals, but sadly they graduated into very little. Now the term implies that they graduate into old age.

What I would like to emphasise is that these people have very disabling conditions that have affected them in all aspects of their life, for most of their adult life. They need a treatment approach that involves active rehabilitation throughout their life, and they require very complex care packages to meet their various social, psychological and medical needs.

Regrettably, in recent years there has been pressure for transfer of this group into specialist old age psychiatry services, based not on the identified needs of these patients but rather on age criteria alone.

There has, however, been no suggestion there might be a transfer of resources, or the development of resources to meet their needs. The effects of transferring the graduate population on the current service users in old age psychiatry – in other words people with dementia and those who develop their disorders later in life and who have a very different set of needs from those of the particular group I am concerned with here – without the provision of adequate specific resources would be extremely deleterious. It would without doubt result in a substantial reduction in services to current patients in Old Age Psychiatry Services.

Long-stay care for older people with mental disordersThe third issue I would like to highlight is long-stay care for older people with mental disorders.

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A one-dimensional view is taken of long-stay care for older people in general, with a ‘one size fits all’ model which is clearly inappropriate.Two examples illustrate this point.

Firstly, it is obviously not sensible to have physically frail older people in the same setting as dementia sufferers who have severe behavioural problems such as aggression or agitation. Both would suffer badly, but particularly the physically frail people.

Likewise, it is also wrong to assume that all older people who require residential care on the basis of mental health problems require the same sort of setting. The example I offer is that of people with dementia living cheek by jowl with people who have long-standing schizophrenia. These two groups have very different needs, and to have both in the same setting would mean that both would suffer a reduction in their quality of life because of the adverse effects they would have on each other.

What is good in current practice?Rather than dwelling solely on what is gloomy, I will say something about what is good before considering the appropriate responses to the issues I have raised.

Working relationships between medicine for the elderly and old age psychiatryFirstly, geriatric medicine and old age psychiatry have developed close working relationships. There is a lot of interaction between us, including joint educational activities, which are all to the good in terms of the people for whom we are trying to provide a service.

Flexibility of community servicesSecondly, the community support services do not adopt an exclusive attitude, or refuse to deal with people with mental health problems.

However, these services are in very short supply. Simple measures can make all the difference to whether a person can stay at home or has to move into long-term care. These include the availability of home supports on a twenty-four hour basis, allowing support staff to go into people’s homes by day and night as required, or even to be able to go in once a day and supervise medication. Unfortunately, such services are not generally available, whether it is mental health drugs or physical medicine drugs which need to be supervised.

Dementia in people with Down SyndromeIn the area in north Dublin where I work, there has been a very positive response from the Daughters of Charity Learning Disability services to people with Down Syndrome who also develop dementia. They have looked at the needs of the people they are caring for on a long-term basis, and have accommodated to meet changing needs over time.

This development is a huge advantage for people with Down Syndrome and for their relatives, because it means they are able to retain long established and highly treasured contacts with the service.

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How should health and social care services respond?Tackling ageismIn terms of health and social care, insofar as older people with mental health problems are concerned, the main problem that we are battling against is ageism.

The effects of ageism are apparent in both directions. As I have tried to illustrate, early onset dementia is excluded by age rather than by need, and ‘graduates’ are included by age and not by need. In fact, if adequate resources were provided, there would be no need for these distinctions. Within the service I work in, for example, where we have a particular expertise in dementia, we would be very happy to take on people with early onset dementia, given adequate resources.

Similarly, if the Health Service Executive decided that it wished to move towards an Elderly Directorate model for older people with mental health problems, people who develop severe mental illness under the age of 65 could also be accommodated within Psychiatry of Old Age in a newly created subdivision of the service, with additional ring-fenced personnel with appropriate skills and the specific resources required by the patient group – which are different from those which people with dementia require.

Cooperation within the Care Group systemAs I have already indicated, there are now three Care Groups involved with the people that I deal with in my service. In consequence, there is no ring-fenced funding, so it is essential that the Care Group boundaries are broken down and that there can be an appropriate allocation of funds, as well as joint planning between the three Care Groups.

An example is that the Elderly Care Group plan and develop services for older people with physical problems but not for those with psychological or behavioural problems. This makes no sense because a condition like depression is common to both our services, with elderly people with physical illnesses very often suffering from depression, and vice versa. So it is important that the Care Groups work together, accept joint responsibility and plan accordingly.

The coterminous approachThe other recommendation I would make is that there be a coterminous approach, working from the bottom upwards, with primary and secondary care services working together on the geographical patch model. This should be a reasonable sized area rather than the vast patches that many of us have to cover, so that comprehensive care based on home assessment (which is what we do in old age psychiatry) or day hospital assessment (which is what medicine for the elderly offers) could be provided.

Treatment should be home-based insofar as that is possible and practical, and there should be social supports available from the primary care services to facilitate independence. Where residential care is required, it should be provided within the person's community, in small units geared towards their needs, rather than at a distance in large institutions, because that is when problems may arise.

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Developing residential care services

For residential care, there must be a proper needs assessment, rather than simple grouping by age. There should be a range of settings to respond to people’s individual problems, and the type and number of places that are required should be based on guidelines which are readily available and which have stood the test of time.

If an Irish database were available, it would help enormously with planning these services.

ConclusionMental health disorders, as I hope I have illustrated, are extremely common in later life. They may be very disabling but they are also very treatable. The responses are there if they can be made available.

However, I would emphasise the following three points:

First, appropriate responses are in danger of being lost in the Care Group system;

second, ageism undoubtedly limits effectiveness, and it does so in both directions;

and finally, inadequate resourcing remains a major problem.

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Older People with Disabilities and AssistiveTechnologyGerry Ellis, Usability and Accessibility Consultant, Feel The BenefIT

IntroductionMy contribution today relates primarily to the role that technology can play in facilitating older people and people with disabilities to play a full part in their societies and in living their lives independently. Other speakers have highlighted the fact that demographics dictate that older people are becoming an increasing proportion of the population. Thus, I will only include one statistic: A Strategy for Equality, the report of the Commission on the Status of People with Disabilities estimated ‘that half of all people with disabilities in the Republic are aged 60 and over’. It is, therefore, obvious that the interface between ageing and disability is both porous and becoming ever more significant.

The role of technologyPeople with disabilities are frequently unintentionally excluded from many aspects of society because of inaccessible transport, physical environments or paper-based information. Because of this, people with disabilities can gain disproportionately if they can use electronic alternatives. This includes obvious areas such as employment and e-commerce, but also such areas as using household devices, television and lifelong learning. An area of particular importance is accessing public information such as exchanging information with government web sites.

Technology, however, can be a twin-bladed sword, as it can create barriers that did not previously exist. As more and more products and services are delivered electronically rather than in more traditional methods, it is becoming increasingly important to be able to access them electronically. If they are not designed in a way that is accessible, new barriers are erected to people with disabilities, including older people, which would not otherwise exist.

Design for AllDesign for All is an approach to designing products and services that includes the needs of the maximum number of potential users without alteration. This relates to all products and services including transport, buildings etc., but can be of particular use in the area of information technology. It is an approach to design of products and services which tries to include the needs of the maximum number of users without having to alter that product or service.

Design for All includes the idea that people with disability, older people and other potential users should be involved right from the design stage through the testing phases of a product or service, to ensure that their needs are included. It is too late

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finding out after a product is developed and is being tested that it is inaccessible. It also recognises that it costs little to include the needs of older people and people with disabilities at the design stage, but accessibility is expensive to retrofit.

Public bodiesThe use of Design for All criteria is particularly important for public bodies. They cannot choose their customers, including people with disabilities and older people.

Public bodies see opportunities to save money by delivering products and services electronically rather than by using more traditional, labour-intensive methods. They will never realise those savings if they ignore the needs of a large number of their potential customers, such as older people and people with disabilities, for whom they will have to continue to provide the labour-intensive services. So they also gain if their products and services are accessible.

Policy areas of concernAs technology becomes increasingly pervasive in all areas of our lives, both inside and outside the home, the areas of policy that are of concern are extraordinarily wide. Yet they must be influenced now, as decisions taken today will affect people for many years to come.

This paper can only touch on a small number of the more important areas of concern. These include:

European Directives on Public ProcurementTwo European Directives are due to come into force throughout Europe at the end of this month, and cover every cent that is spent by public bodies. They allow for the needs of people with disabilities to be taken into account by public bodies when awarding public contracts. It is vital that these Directives are transposed into Irish legislation in such a way as to ensure that they will make a real and positive difference for people with disabilities and older people. They must then be implemented and policed, and it will be up to us to make sure that that is the case.

Design for AllEvery effort must be made to ensure that Design for All criteria are utilised when developing technology products and services, be they in the public or private sector. Locally, this involves education of designers and developers, promotion of the benefits and, in some cases, enforcement.

However, it must also include promoting such criteria amongst the developers of standards at a European and world level. The inclusion of such criteria in mainstream products and services offers the best opportunity to improve the penetration of accessibility and it will also reduce costs. It should be noted that the main Standards bodies in Europe have already started adopting Design for All in their standards.

Building RegulationsIt is pointless having accessible technology if one cannot get into a building or use all the facilities provided inside. Thus, the existing Part M of the Building

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Regulations must be enforced. Much recent research has shown that this is currently far from the case.

These regulations are currently being reviewed. They must recognise various strategies used by people with disabilities and older people. These do not just include physical needs such as those using electronic scooters and their like, but also those using assistive technologies and aids to independent living such as Personal Assistants and guide dogs.

Sectoral PlansUnder the recent Disability Act, six Departments have produced draft Sectoral Plans as part of the government’s disability strategy. These are currently the subject of consultation.

It is very important that we influence them to ensure the maximum benefit to people with disabilities and older people. For instance, the Plan from the Department of Communications, the Marine and Natural Resources says nothing about communications. Nor does it mention the agencies under its remit such as ESB, Bord Gáis, etc.

Organisations of people with disabilities and older people must make their voices heard to influence these Plans.

Health and social services concernsAgain, as this is such a wide area, this paper can only touch on some of the more important areas. These include:

Quality assuranceIt is vital that the quality of all services is monitored and enforced. This includes ensuring that standards such as those developed by the National Standards for Disability Services Project in the NDA take specific account of the needs of older people. These standards must be adapted and enforced by service providers.

Coordination of lobbyingIt is difficult for any service provider or public organisation to prioritise needs when they receive a plethora of different submissions on a wide variety of subjects from myriad groups of consumers at varying times.

It would be particularly useful if consumer organisations of people with disabilities and older people would come together on a regular basis to prioritise needs and make joint submissions. This would in no way prevent any organisation making an individual submission outside of this process.

Coordination of deliveryIt is vital that services that are delivered by public bodies under the aegis of different Government Departments and by private bodies are co-ordinated. This involves representatives of these Departments and private bodies working together to agree priorities and harmonise standards. They must also ensure that these standards are implemented and adhered to.

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Person-centred approach

Nobody would disagree with the idea of placing the person at the centre of service delivery. However, for this to be truly effective funding should follow the person, not the service provider.

Once consumers have control of the funding, they can then choose which is their preferred provider. This is sure to improve competition and standards of service.

This also requires that advocacy services are made available because many older people with disabilities would not be used to making those choices without this support.

ConclusionsOlder people are not only an increasingly large proportion of the population, but a large number of them have a variety of disabilities. They can gain disproportionately from access to technologies, as they often do not have access to alternatives that are available to other members of society. However, if technologies used in the home and elsewhere are inaccessible, they will become an increasing and unnecessary barrier.

Interventions are required to ensure that products and services designed now will be accessible to older people over the next number of years. These include the areas of education of designers and developers, promotion of the benefits and, in some cases, enforcement.

Coordination of lobbying, harmonisation of standards at a national, European and international level and a person-centred approach to delivery are all key requirements.

These are big demands, but our Constitution and the ideals of our Republic assert equality for all citizens. Increasingly, this means equality in access to information and communication technologies. Action now to ensure the accessibility to ICTs will allow older people to contribute to their societies and allow them to better enjoy their later years. All of society will gain.

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Discussion (2)

Following the panel presentations, comments and questions to the panellists were invited from the floor, and a short exchange of views took place, focusing on three main areas: questions of terminology which had been used in the presentations; the difficulties associated with chronological age boundaries; and the need for advocacy services for older people with disabilities.

TerminologyIn response to an objection from a participant to his use of the term ‘bed blocker’, Dr Mulpeter clarified that he had referred to the expression precisely to highlight the fact that the people referred to were in fact disabled people who could not go home.

The use of the term ‘successful ageing’ was queried by a participant who pointed out how, in contrast to the expressions ‘positive ageing’ and ‘active ageing’, it can imply failure for some older people, and thus exclude them. Dr McCarron responded that the use of the term in the medical profession had now been expanded to include the sense of ‘active aging’ and was not used solely in relation to levels of physical and mental health.

One participant queried Dr Mulpeter’s use of the concept of ‘marketing’, commenting that it would be unwise to depend on the market to provide the services that older people and people with disability need, as these services would inevitably turn out to be minimal. Dr Mulpeter agreed and clarified his point that resources should be made available to individuals in order for them to make their own choices.

Chronological age barriers It was noted that the age limit of 65 had been raised several times in the presentations, and was central to the issues NCAOP and NDA were exploring, and to their concern for person-centred services.

A number of concerns were raised from the floor, in the context of the HSE’s move to consultant-led services, in which consultants increasingly tend to practice one specialism:

Who screens the patient and decides what service they will receive? Will it be the receptionist, or will consultants themselves decide?

Are consultants complicit in discrimination if they use the 65 year cut-off because they are strapped for resources?

How will care for older people with multiple health problems be organised, and who will take overall responsibility?

Panellists agreed that there were difficulties for the groups who were the subject of the seminar, in the way medical care is evolving.

Mr Ellis reminded the seminar that one of the reasons for the age 65 boundary was that a range of services developed in the 1980s and 1990s using EU money

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and aimed specifically at people who would be enabled to take up or return to employment after receiving the service. This inevitably meant discrimination against people who were not likely to be employed because they were already past normal working age.

Dr Wrigley agreed that the age limit was a barrier to providing the most appropriate care for each person, but pointed out the practical difficulties in current circumstances of trying to ignore cut-off points in providing medical care. This could often mean displacement of one patient by another if additional resources were not available.

Moreover, while she agreed that there is a gap in relation to people under 65 with dementia, and that her service would be best placed to work in this area with organisation like the Alzheimer Society of Ireland, she also emphasised that the needs of younger and older people are different. Her approach was to highlight the issues, including the need for greater resources.

Advocacy services for older people with disabilitiesThe panel were asked by a speaker from the Alzheimer Society to outline priorities for the development of advocacy services.

Dr Mulpeter responded that the vital thing was to facilitate the older persons or disabled persons to speak for themselves, however difficult this might be. This would deliver a much stronger message than organisations speaking for them.

Dr McCarron suggested that it was important to look at other fields where advocacy services have already developed strongly, and learn from their experiences.

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Closing RemarksSiobhan Barron, Acting Director, National Disability Authority

I would like to take this opportunity to underscore the National Disability Authority’s commitment to the area of ageing and disability. 42 per cent of disabled people are aged over 65, and the NDA considers the time is ripe to work with the National Council on Ageing and Older People on ageing and disability as a key area of our work for the future. The discussion this morning has been very valuable, and the proceedings of this seminar will inform our policy development on ageing and disability.

There are a number of developments in the external environment that can impact positively on older people with disabilities and on those who acquire disabilities later in life.

The Government’s National Disability Strategy affirms its commitment to disability policy in a number of important ways:

Provisions of the Disability Act 2005: Part 2 of the Act provides for an independent assessment of need in relation to health services, and people will have an individual service statement and access to a complaints and appeal mechanism.

Accessibility of public buildings and services: Part 3 of the Act imposes a new duty on public bodies to make public buildings accessible by 31st December 2015, and as far as practicable to make their services and information accessible to people with disabilities. This section includes access to a complaints process with right of appeal to the Ombudsman. These developments will be of benefit to disabled people of all ages.

Sectoral Plans from Government Departments: under the National Disability Strategy, six Government Departments are required to produce Sectoral Plans and programmes of action about their services for people with disabilities. These are now published in draft form, will be finalised in consultation with the sector, and are due to go before the Oireachtas by the end of July. There is a good opportunity now to inform Departments about how their Plans could benefit older people with disabilities.

Design for All: the Act establishes a Centre for Excellence in Universal Design (or ‘design for all’) within the National Disability Authority to promote accessibility in design.

Accessible public broadcasting: the Act also provides for the Broadcasting Commission of Ireland to make rules so that broadcasts can be more accessible to people with hearing and vision impairments. These will cover such matters as providing subtitling, audio description and sign language.

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A National Disability Survey: for the first time in Ireland there will be a National Disability Survey in 2006. This is built on to the National Census, and will be a unique opportunity to get a comprehensive picture of the numbers of people with disabilities. It will provide us with important data across social, economic and other aspects of people’s lives, to assist in planning of services and policies.

Public transport: significant commitments have been made towards accessible public transport in the Transport 21 strategy.

Review of Part M of the Building Regulations: this has recently been announced by Government.

So there are a lot of important developments, which are all happening fairly soon, and there is a real chance for change.

The National Disability Strategy and the other Government policies will need to take account of the needs of an older population with disabilities, and today’s seminar has been a significant contribution in informing us on the key issues that need to be addressed.

The National Disability Authority is well positioned, given its statutory role, to advise the Minister on disability policy and to support the development of an inclusive society for people with disabilities of all ages. It has significant expertise in the areas of research, guidelines and policy, for example in relation to accessibility and person-centred planning. We recognise that there are specific issues for older people with disabilities which require attention, and we are committed to utilising our expertise to advise on the development of policies which will enable the social inclusion and independence of older people with disabilities.

One of the core values underpinning the NDA’s work is that of partnership, and we look forward to working in partnership with the NCAOP on developing a joint draft policy position paper which can be used as a basis for advising Government on ageing and disability policy.

Acknowledgements

I would like to take the opportunity to thank the staff of the NCAOP for organising this seminar, and enabling our participation.

In particular I would like to thank Dr. Mark Priestley, Dr. Ken Mulpeter, Dr. Mary McCarron, Dr. Margo Wrigley and Mr Gerry Ellis for sharing their expertise with us.

Our thanks also go to Councillor Eibhlin Byrne, Chairperson, Bob Carroll, Director, and Patricia Conboy, Policy Officer, at the NCAOP for their commitment during the development of this project. I would also like to thank Shari McDaid for her contribution and dedication to this project, and to the other staff of the NDA who have supported the workshop.

Finally, I would like to thank you all for your thoughtful contributions to this morning’s discussion.

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Closing RemarksBob Carroll, Director, National Council on Ageing and Older People

First of all, I want to thank everyone for their contributions to a very important enterprise in this joint work to put together a policy paper based on the common interests of the ageing and disability sectors.

I would like to point out a number of things highlighted in the discussions, which I think are particularly important.

At the beginning we said that there is currently a flow of policy, legislative, funding and service development initiatives under way which carry different implications for people on the basis of how they are categorised administratively, rather than on the basis of need. We have to get over that, and I think that in our work together we can contribute to overcoming that hurdle.

Clearly there are differences of need for people with different impairments, and those with early and late onset disability. But while these differences call for different responses, they do not necessarily call for different organisational structures. Services should only be organised, funded and available on the basis of assessed need which takes the whole person into account. To do otherwise risks jeopardising equity, consistency and justice, which must be at the heart of society's response to the needs of those who are old or who are disabled.

I would like to take up Mark Priestley's helpful points on the life course approach to age and disability. His distinction between the individual biographical way of thinking about the life course and the structural normative way of thinking about it is most useful. The life course perspective is critical in protecting the individual from negative societal attitudes, particularly ageism, and especially at times when services and care are being negotiated and mediated. We need to hold on to that.

My final point refers to the whole way we talk about ageing, including the difficulties associated with the term ‘successful ageing’.

As an alternative, I will offer the definition of an age friendly society, which is also a disability friendly society, as the National Council on Ageing and Older People put it forward recently in its position paper, The Age Friendly Society:

A society for all ages is the foundation for an age friendly society. In such a society the interdependence of generations and individuals is emphasised, diversity is recognised, the identity, values and beliefs of the individual are protected and social cohesion is fostered through the adoption of socially inclusive policies and priorities. In a society for all ages, the generations are valued equally, and intergenerational solidarity is part of the social contract. In such a society, a life course perspective is adopted by all authorities, there is consistency and equity in the treatment of all citizens and risks are pooled between and within generations. (NCAOP 2005, p.27)

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Our position paper went on to consider the issue, which has been raised here today, of social constructs of ageing. It states:

A truly age friendly society will not impose any social construct of ageing on its individual older citizens. To do so would risk alienating those for whom those constructs have no relevance or meaning and who may feel threatened by a perceived moral selectivity or burdened by norms set by others. In contrast, an age friendly society will be person-centred and will seek to accommodate the perspective of the individual older person as far as it can be ascertained, as well as respecting the older person’s lived experience of ageing. (NCAOP 2005, p.28)

This will be true also for individuals with disabilities in a disability friendly society.

The National Council on Ageing and Older People is particularly concerned to further explore with older people with disabilities the meaning for them of independence, dependence and interdependence, and the barriers faced by those with early onset disability or with late onset disability in achieving a good quality of life despite their illness or disability.

Thank you.

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Speakers and Chairs

Eibhlin ByrneCouncillor Eibhlin Byrne is the Chairperson of the National Council on Ageing and Older People.

Patricia ConboyPatricia Conboy is Policy Officer with the National Council on Ageing and Older People.

Shari McDaidShari McDaid is Policy and Public Affairs Advisor with the National Disability Authority.

Mark PriestleyDr Mark Priestley is a Reader in the Centre for Disability Studies in the University of Leeds and currently Pro-Dean for Research in the Faculty of Education, Social Sciences and Law.

From 1999 to 2002 he held a personal ESRC Research Fellowship for a three-year programme of research under the title Disability, Social Policy and the Life Course. He is also administrator of the international discussion group, which he founded in December 1994 as a focus for global debate on disability research issues. Mark contributes to taught courses in disability studies, social policy and research methods.

He was formerly a lecturer in Rehabilitation Work with Visually Impaired People and an independent trainer with social services and health sector staff.

His current research interests include the implementation of direct payments policies in the UK, and comparative and European disability policies.

Siobhan BarronSiobhan Barron is Acting Director of the National Disability Authority.

Ken MulpeterDr Ken Mulpeter is a Consultant Geriatrician at Letterkenny General Hospital, and is Chair of the Irish Society of Physicians in Geriatric Medicine (ISPGM).

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http://www.leeds.ac.uk/disability-studies/projects/ukdirectpayments.htm

http://www.leeds.ac.uk/disability-studies/projects/ukdirectpayments.htm

http://www.leeds.ac.uk/disability-studies/projects/lifecour.htm

http://www.leeds.ac.uk/disability-studies/projects/lifecour.htm

http://www.esrc.ac.uk/

http://www.leeds.ac.uk/disability-studies


Mary McCarronDr Mary McCarron is an international expert in the field of intellectual disability and dementia, and has played lead roles in assessing symptoms of dementia, developing specialist clinic services, and consulting on day-to-day care management.

She is a Lecturer and Acting Director of Research at the School of Nursing and Midwifery, Trinity College, and is the Policy and Service Advisor on Dementia Care for the Daughters of Charity Service.

Dr McCarron also provides a variety of consultation services to governmental and voluntary providers and to umbrella agencies.

Margo WrigleyDr Margo Wrigley is Consultant Psychiatrist and Clinical Director, Psychiatry of Old Age at St Vincent’s Hospital Fairview, and at the Mater Misericordiae Hospital.

Gerry EllisGerry Ellis is a consultant in the area of Accessibility and Usability under the company name of ‘Feel the BenefIT’. He is blind and works as a software engineer with a major bank in Dublin. He holds a degree in Economics from University College Dublin and is a Fellow of the Irish Computer Society.

He has been active at a local, national and international level in organisations involved with the inclusion of people with disabilities in all aspects of society for over 20 years.

Bob CarrollBob Carroll is Director of the National Council on Ageing and Older People.

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Seminar Participants

Ms Siobhan Barron Acting Director, National Disability Authority

Ms Martina Baxter Office Manager, FADE - Fingal Awareness of Disability and Equality

Mr Brendan Broderick CEO, Sisters of Charity of Jesus and Mary

Cllr Éibhlin Byrne Chairperson, National Council on Ageing and Older People

Mr Gerard Byrne National Council for the Blind of Ireland

Ms Maureen Caffrey Area Coordinator of Services for Older People HSE North Eastern Area

Ms Mary Cannon Strategy Implementation Officer, HSE Dublin North East

Ms Avril Carey Occupational Therapist, HSE East Coast Area

Mr Bob Carroll Director, National Council on Ageing and Older People

Ms Carmel Clarke Activities Coordinator, Dublin 7 Centre for Independent Living

Mr Oliver Clery Member, National Council on Ageing and Older People

Ms Patricia Conboy Policy Officer, National Council on Ageing and Older People

Ms Janet Convery Director of Services for Older People, HSE East Coast Area

Ms Mimi Copty Project Director, Irish College of General Practitioners

Ms Liza Costello DISCUSSION GROUP RAPPORTEUR

Mr Michael Costello Access Committee, Irish Hard of Hearing

Dr Wendy Cox CONFERENCE RAPPORTEUR

Ms Aideen Delaney Instructor/Supervisor, EVE Limited

Ms Sarah Delaney DISCUSSION GROUP FACILITATOR

Ms Cliona Doherty Research Officer, Rehab Group

Ms Michelle Donnelly DISCUSSION GROUP RAPPORTEUR

Mr Brian Dowling Department of Health and Children

Ms Eleanor Edmond Advocacy Manager, Alzheimer Society of Ireland

Mr Gerry Ellis Consultant, Feel the BenefIT

Ms Lisa Farrelly SEO Services for Older People, HSE Dublin North East

Mr David Fennell Manager, Cheshire Community Services

Ms Mo Flynn National Care Group Manager, Health Service Executive

Ms Maria Fox Regional Support Officer, Disability Federation of Ireland

Mr Matthew Gibbs Senior Social Worker, St. James's Hospital

Mr Seamus Greene Director, National Parents and Siblings Alliance

Ms Elaine Grehan Deaf Forward Coordinator, Irish Deaf Society

Ms Maeve Halpin Development Officer, Care Local

Ms Maria Hayes Assistive Living Coordinator, FADE - Fingal Awareness of Disability and Equality

Mr John Heuston SEMINAR ORGANISER

Ms Karen Holmes Services Coordinator, Post Polio Support Group

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Ms Orla Joyce Legal Researcher, The Law Reform Commission

Ms Samantha Kenny SEMINAR ORGANISER

Ms Geraldine Keohane Director of Nursing, Montenotte Care Centre

Dr Marie Laffoy Assistant National Director Population Health, Strategic Planning and Evaluation, Health Service Executive

Ms Joyce Lee Senior Occupational Therapist, HSE East Coast Area

Ms Julie Ling Nurse Adviser, Services for Older People and Palliative Care Department of Health and Children

Mr Gerald Luke Dublin 7 Centre for Independent Living

Ms Brege McCarrick Disability Coordinator, HSE Midland Area

Dr Mary McCarron School of Nursing and Midwifery, Trinity College

Ms Rosarie McCarthy DISCUSSION GROUP RAPPORTEUR

Mr Gerry McCreanor Services Manager, HSE Western Area

Ms Olga McDaid DISCUSSION GROUP FACILITATOR

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

Mr Tony McEvoy Resident at St. Patrick's Cheshire Home

Ms Grainne McGettrick Policy Officer, Alzheimer Society of Ireland

Ms Joan McGovern Service Planning Coordinator, HSE Western Area

Ms Breda McHugh Care of Older Person, Irish Nurses Organisation

Mr Tony McQuinn Senior Manager, Comhairle

Mr Paul Maher Education and Training, Age and Opportunity

Ms Sarah Marsh Senior Social Worker, Irish Association of Social Workers

Ms Joanna Marsden Information and Publications Coordinator, Irish Wheelchair Association

Ms Marion Meany Director of Services for People with Disabilities HSE South Western Area

Ms Kate Meehan Keyworker for Adults with Physical Disability, HSE North Western

Mr Barry Moriarty SEO, HSE Dublin / Mid-Leinster Region

Mr Tom Moulder Information Officer, Dublin 7 Centre for Independent Living

Ms Geraldine Mullarkey Choice Project Officer, HSE North Western Area

Dr Ken Mulpeter Consultant Geriatrician, Letterkenny General Hospital and Chair, Irish Society of Physicians in Geriatric Medicine

Ms Geraldine Murphy Manager of Services for Older People, HSE Northern Area

Mr Jim Murphy Director, Services for Older People, HSE Dublin North East

Mr Michael Murphy Member, NCAOP

Ms Rosemarie Nolan Care of Older Persons, Irish Nurses Organisation

Mr Maurice O'Connell Alzheimer Society of Ireland

Ms Christine O'Kelly Development Officer, Older Women's Network (OWN Ireland)

Ms Aine O'Riordan Physiotherapy Manager, HSE Dublin North Central

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Ms Joyce Ormsby LHO Coordinator, HSE Northern Area

Dr Mark Priestley Centre for Disability Studies, University of Leeds

Ms Sinead Quill DISCUSSION GROUP RAPPORTEUR

Ms Louise Richardson CEO, Older Women's Network (OWN Ireland)

Mr James Rickard Diversity Development Officer, Rehab Group

Ms Patricia Rickard-Clarke Commissioner, The Law Reform Commission

Ms Michelle Rogers SEMINAR ORGANISER

Ms Hilary Scanlon Care Group Coordinator, HSE Southern Area

Ms Louise Shaarin Irish Deaf Society

Ms Sheila Simmons Irish Association of Older People (IAOP)

Dr David Stratton Head of Policy and Research, Age Action Ireland

Ms Regina Ward SEMINAR ORGANISER

Mr Austin Waters Project Manager, HSE North Eastern Area

Ms Marion Wilkinson DISCUSSION GROUP FACILITATOR

Dr Margo Wrigley Dept. of Old Age Psychiatry, Mater Hospital, Dublin

2 assistants from St. Patrick's Cheshire Home

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