Sir, – I should like to take up several points made by Paddy Connelly, chief executive of Inclusion Ireland (July 10th).
He states that persons with disability “should be supported to have a home of their own”, arguing that “all persons with disabilities have the capacity to live independent lives in the community, with the right supports”.
This, in my view, is wrong on several counts.
Many disabled people need full-time care, therefore in no way could they ever be considered living “independent lives”, notwithstanding “the right supports”.
And what supports? One has to fight hard to get even a few hours of home help provided by the HSE by way of a personal assistant, so the possibility of acquiring a personal assistant to live in the private home of a disabled person who needs full-time care is wholly unrealistic.
He argues that the Health Information and Quality Authority (HIQA), in carrying out inspection of residential facilities for people with disabilities, has “catalogued extensive non-compliance with regulations in areas such as health and safety”.
Do some people naively assume that HIQA would be in a position to carry out the same rigorous inspection on behalf of the thousands of disabled adults, (many, one assumes, with a moderate or severe disability), who, he argues, would be better living “independently”? It would be totally unfeasible. The present system, to my mind, is much more reassuring, as at least inspection is being carried out, and followed through on.
Finally, Mr Connelly argues against (in his words) a “group home setting”, on the assumption that all disabled adults would prefer to live independently.
This is not the case. Our 38-year-old son, for example, who has cerebral palsy, and is wholly dependent on my husband and me (now in our 70s) for his needs, would be extremely unhappy living alone (one assumes with this imaginary full-time personal assistant).
It would give us enormous peace of mind if, once we are no longer able to care for him, our son could share accommodation with others of similar disability, each with a private living area, within the community, with shared full-time support, an arrangement that would make practical and economic sense.
However, despite our making extensive inquiries, we understand that this choice simply does not exist.
The HSE is currently closing residential homes but has not provided any alternative for the thousands of people in our son’s position.
As your excellent coverage of this appalling situation highlighted recently, ageing parents of disabled adult children have absolutely no idea what will happen to them once we die, a fear that haunts us daily. – Yours, etc,
ROSEMARY GRAHAM,
Malahide,
Co Dublin.