Who cares for the disabled when their parents pass on?
It's the ultimate sadness for thousands of parents who worry about what will happen to their vulnerable child after they themselves fall ill or die.
They have looked after their intellectually disabled son or daughter throughout their lives, but who will show their child the same love and devotion when they are gone?
The anxieties facing many of these families were underlined recently after a new report showed that many people with an intellectual disability are now outliving their parents but waiting lists for residential and community care remain a problem.
Nearly one in two people with a profound intellectual disability is now over the age of 35 years, compared to just 29pc in 1974.
There are 3,154 people, who in previous generations would have died young, who are now alive and over 55 years of age.
Better health and well-being, control of infectious disease, improved nutrition and access to health services have all contributed to their longevity.
The majority of adults with an intellectual disability live with their families. However, as people live longer, they are going to be in need of residential or community care funded by the health service when their parents can no longer look after them.
There are currently 26,066 children and adults registered with an intellectual disability in Ireland, with men outnumbering women, the 2009 report from the Health Research Board, which has just been launched, showed.
The changing age profile means that there is growing pressure on services, with high levels of demand for full-time residential care and support services for ageing parents. Care should also be designed to specifically meet the needs of the older age group.
Changes in physical health and mental functioning that are part of the ageing process for the general population can happen earlier for people with disabilities.
Sadly, it found that there are still 308 people with an intellectual disability inappropriately cared for in psychiatric hospitals, a fall of just 31 since 2008.
Up to 25,556 had service-like daycare but 263 were without any although they were identified as needing support.
It showed that 8,251 were in full-time residential care, a fall of 39 since 2008. This is a welcome move as more people are being transferred to community group homes which improve their quality of life.
But it highlighted how the availability of respite care varies across the country.
It's more than 10 years since Brian Cowen, as Health Minister, announced the first substantial investment in facilities for people with an intellectual disability.
As so often happens, the breakthrough came after parents, weary from years of fruitless campaigning, simply threw down the gauntlet to the then Government.
They were eventually promised more residential, day and other care. But 10 years on the challenge is to sustain it.
Launching the Health Research Board report, Junior Health Minister John Moloney said it indicated that more people were availing of day services in 2009 than at any point since the data was collected.
"The findings also highlight the continuing shift from the more traditional institutional models of care towards community living."
While that may sound promising, don't expect the care of people with disabilities to feature prominently in any party's manifesto in the forthcoming general election.
- Eilish O'Regan
Irish Independent
