Ageing and intellectual disability —A cross-border issue?

by Roy McConkey and Maria Truesdale Kennedy, Institute of Nursing Research

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People with an intellectual disability are living longer than ever in Ireland. This means that often they outlive their parents, so many over 55s are living in some form of residential accommodation—75% in the Republic and an estimated 50% in Northern Ireland. Longevity is a cause for celebration and it bears testimony to the loving care provided by families and professionals in recent years. But if that is the silver lining, the accompanying cloud is the lack of preparation among services on both sides of the border to meet the needs of an ageing population.

That is the conclusion from a cross-border seminar sponsored by the Centre for Ageing Research and Development in Ireland (CARDI). This grew out of a joint research and development project led by Professor Roy McConkey at the University of Ulster and Professor Mary McCarron from Trinity College Dublin (who directs the Intellectual Disability Supplement to TILDA, the national longitudinal study on ageing.) CARDI has produced a research brief based on this research. The cross-border seminar attracted nearly 40 delegates from a range of disciplines and organisations to analyse the implications for future policy and practice on the island of Ireland.

The event was facilitated by Professor Philip McCallion—a frequent visitor to Ireland but who is based in the USA—who set the international context and challenged seminar participants to question some ‘sacred cows’ such as: where’s the evidence that particular professional supports and therapies make a difference? Mary McCarron gave an update on early findings from the first wave of data gathering, which is drawing to a close with over 700 persons enrolled. Dr Maria Truesdale-Kennedy presented initial results from an ongoing study in Northern Ireland on elderly carers and their particular support needs. Kevin Keenan, Assistant Director of Social Services with the Health and Social Care Board (with responsibilities for older persons services), identified the potential synergies between intellectual disability provision and mainstream services for older persons. (Copies of the Powerpoint presentations are available on request).

However, time was also given to round-table discussions about present and future services. Unsurprisingly, the issues and solutions were often similar on both sides of the border. The aim was to identify an action plan for moving forward and to explore the potential for greater cross-border cooperation. Figure 1 summarises the five core themes that need to be addressed with two key action points for each.

Health needs

The increased health needs of older persons are well documented. The two key actions were:

— The need for annual health checks for persons aged over 50, to pick up early signs of illness. This should include mental health checks (e.g. for dementia), as well as screening for diabetes, heart and other common health problems. These health checks are underway in Northern Ireland as part of the National Health Service, but seem to be patchy in the Republic of Ireland.

— Active health promotion strategies need to be implemented from an early age to ensure a healthier old age. Individual service plans or personal outcome plans could be a vehicle for driving health gains, but they do not seem to be used in this way. This is particularly surprising for persons living in residential centres and homes that often employ a high proportion of nursing staff.

New services

Much of our current service provision was not designed to meet the needs of older persons, simply because they did not live into old age. Immediate challenges were:

— Devising new forms of day services for people as they retire from work or as an alternative to existing day centres and workshops that are often too large and noisy for older people. Day services will let seniors meet their friends and provide them with pursuits to keep them mentally and physically healthy.

— Individualised (direct) payments could be a fruitful means of providing cost-effective supports tailored to the person’s needs and aspirations. There are promising examples of how personal support arrangements have opened new horizons in Ireland and elsewhere.

Mainstream older persons’ services

In rural Ireland, especially, there should be much greater joint planning and service delivery between specialist intellectual disability services and mainstream services for older persons, notwithstanding the long years of separation between them on both sides of the border. Their complementary expertise could assist with the provision of new day opportunities, as well as identifying people with intellectual disability who may not be known to services. However, two particular issues were noted:

— Increased housing options for older persons with intellectual disability would result from greater liaison with mainstream services. For example, if local housing is not available, then a move to specialist provision for people with ID would take them away from their local community and family connections.

— Mainstream dementia services should be accessible to people with ID, as often these professionals have expertise and resources that are not found within ID services.

Family support

In times of austerity, monies will not be available to fund residential care packages. Hence incentives may be needed to encourage families to continue caring for their relative with intellectual disability. Equally, family advocacy is not well developed on the island, which further inhibits the provision of better family support services to older carers. Two actions would bring dividends:

— More flexible short-break (respite) provision is needed, offering a variety of options. There are good examples emerging from around the island and these need to be publicised and replicated.

— Succession plans should be in place for future care of the person. These could include the person remaining in the family home or other family members taking over their care. In either case, resources should be made available to families to enable them to undertake any adaptations to their home in order to accommodate the person.

Increased use of individualised/direct payments for families could be an important mechanism for retaining older persons within their families.

Policy

Latterly there have been encouraging signs on both sides of the border that clearer policy directions are evolving for intellectual disability services. The next phase is to encourage better integration of policy across various client groups. To this end, two main actions were commended:

— Greater emphasis needs to be placed on training personnel in both ID and mainstream services about ageing and the various low-cost adaptations that can be implemented to make a significant difference to people’s lives. Similar training should be accessible to family carers and also to people with ID, so that they can be active participants in keeping healthy and deciding their future care.

— Local area planning involving all the people with a stake in ageing should undertake a review of local provision and make an assessment of future needs, plus an action plan for addressing them. The cross-border event might be replicated at a local level.

This ten-point action plan is the first in Ireland to cover both jurisdictions. Despite their differing models of service provision, there are striking similarities with respect to future needs. Further cross-border initiatives were also identified, including information sharing and training, assessments of service needs, contrasting outcomes from different service models and research projects into end-of-life care, use of technology, and older person’s advocacy.

For too long, ageing and intellectual disability have been perceived as a future, rather than present, concern. This may explain some of the lack of preparation, and indeed enthusiasm, to address a growing problem amid the many other pressing demands on health and social care services on both sides of the border in Ireland. Perhaps the most tangible and fruitful outcome from this seminar will be an appreciation that the future comes all too quickly and that our preparations need to start now.

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