People with an intellectual disability are in many cases now outliving their carers, typically their parents.
A new study also found that many families of people with an intellectual disability have not planned or even discussed future care plans, including in cases where the person may require residential services later in life.
The report, which builds on data collected as part of the continuing longitudinal study on ageing in Ireland, also found that families felt there needed to be flexible services to deal with older people with an intellectual disability, as opposed to the current system which is viewed as “one size fits all”.
There were also calls for more supports for sibling caregivers who said they felt they were not being properly supported in their role as carers.
Prof Damien Brennan of the School of Nursing and Midwifery in Trinity College Dublin said because people with an intellectual disability are now living longer, including outliving their parents, it raises questions over how the State responds as the care role is passed along the generations.
“That has created a new caring dynamic. Often siblings become the primary carer. They do not see their own children taking on the carer role in the future.”
He said this could result in a “care deficit” and the possible need for more residential care places in future.
Prof Brennan said the closure in recent years of older institutions was very welcome and no one was suggesting that that model be revisited, but discussion was now needed as to what measures the State would take to ensure people with an intellectual disability had “quality ageing” later in life.
“The emphasis should be on maintaining people in family home settings, but that requires resources,” he said. “The key thing is to ensure that the supports are in place.”
The desire of older people to remain at home as long as possible was also highlighted yesterday at the Forum on Long-Term Care for Older People in Dublin.
Organised by Sage, the support and advocacy service for older people, the forum heard care in a nursing home or in the home of another family paid to provide care were the least preferred options among the 1,000 adults surveyed in an opinion poll by Amarach Research.
Two thirds listed receiving long-term care in their own home as their highest preference, compared to just 10% favouring nursing homes.
In terms of funding long- term care, the greatest overall preference is through general taxation. “Downsizing” accommodation to generate additional funds is a much less popular option.
The opinion poll, carried out over five days in May, also found that “family and relatives” living close are ranked as most important for enabling those with long- term illnesses to remain in the community, but this does not appear to extend to neighbours and friends.
Speaking at the forum, former Law Reform Commissioner Patricia Rickard-Clarke said services that respect and respond to the “will and preference” of older people must be developed and underpinned by a clear legislative framework.
Ms Rickard-Clarke said older people must be facilitated to live and be cared for in the places of their choice and according to their changing needs.
“Where is the ‘Fair Deal’ in going, or being sent, to where you don’t want to go?” she asked.
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