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(Ireland) TRAGIC future for disabled (autistic) adults

On Aug 6, 2023, RTE: Families plead for more respite services for adult children

VIDEO: Edward Moore is 30 years old. He has autism, and he loves airplanes. He also loves his day service.

Weekend respite offered him independence, but those weekends have been reduced. His mother, Angelina, is no longer able to cope. Her health has deteriorated and she needs help.

Angelina: His respite has been cutback to two. It was six, and he lives for those. There’s 500 on the catchment area here for residential, and Edward isn’t even on that list. What chance has my son got if they’re telling me he isn’t even on a list.

This is a stockpiling crisis. Do people need to fall before they get any help?

Senator Tom Clonan: Angelina and Edward’s situation is just one of hundreds and hundreds across the country, and there’s nothing for them. There’s no support.

In my experience, the funding is there, the money is there, but increasingly I’m finding people in the Health Services Executive and elsewhere who just will not, are refusing to administer and fund these packages.

Reporter: These packages are in greater demand than ever before.

Latest figures from the Health Research Board show there’s over 1,700 people need residential care now or within the next five years.

Over 1,300 people require overnight respite.

Alison Harnett, CEO, National Federation of Voluntary Providers: While the shortage of respite unfortunately is a symptom of a much broader and very serious problem and that problem is the lack of planning for residential support needs for people with disabilities over past decades.

For instance in our services which support people with intellectual disability and autism, last year we reported more than fifteen hundred families where the person was supported by a family carer over the age of 70, and more than 450 of those family carers were over the age of 80.

Reporter: The agency said additional services are being developed this year supported by a commitment from government with additional funding. In the meantime, parents like Angelina worried that they’ll die before they see their children in residential care. And at 62 years of age, without further respite for Edward, Angelina doesn’t foresee herself alive into her 80s.

Angelina: I love my son and I give everything with the heart and a half, but I know I’m going to pass and I know he knows it and he’s looking for reassurance mommy is going to be there for me.

I want to be able to say, look Edward, mommy’s kept her promise.


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