Closure of service for intellectually disabled adults causing ‘enormous stress’

The closure of a residential respite service for intellectually disabled adults in south Dublin for two years has caused “enormous stress” and violates their human rights, affected families say.

The 13 Wyattville facility in Loughlinstown, a four-bedroom unit operated by St John of God community services, provided three- and four-day respite to 78 disabled adults from 77 families up to four times a year.

However, since March 2020, two consecutive emergency placements by the Health Service Executive have forced its closure to the families in its Dublin southeast catchment area, from Killiney to Ringsend. The most recent emergency placement, from last February, involves an individual who cannot share accommodation. Affected families include many with older and ageing parents.

Among the young adults are Harry Gaw (20) and his sister Tara (23), both of whom have Down syndrome. Their mother, Mary, says she is "at the end of [her] tether" and fears for their future. She is among the more than 100 parents campaigning for the service to be reopened.

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Her adult children attend education and day services, are involved in sports and are "very happy in themselves", says Ms Gaw.

Respite, however, has been “crucial” to developing their emotional and practical independence as they transition to adulthood, she said. Regular respite is seen as key towards transitioning Harry and Tara into semi-independent living. Ms Gaw says they both want “to live in a house with their friends one day”.

‘Great location’

Article 19 of the UN Convention on the Rights of People with Disabilities, ratified by Ireland in 2018, states people with disabilities must "have the opportunity to choose their place of residence and where and with whom they live". It says they should "have access to a range of in-home, residential and other community support services".

Harry and Tara “loved respite, absolutely loved it”, says Ms Gaw. “If they knew they were going on Friday they’d have their bags packed the Thursday night. They’d barely say, ‘Goodbye’ going out the door Friday morning,” she said.

“It was in a great location – in their community and on bus routes for their college. And it was theirs. No one else from the family went. They got a break. It was their bit of independence and they were with their friends.

“Tara asks, ‘when are we going to respite again? Is it when the virus is over?’ and I say, ‘Yes, when the virus is over’. What can I tell her?”

While Harry and Tara are not highly dependent, they cannot be left alone or cook for themselves, says Ms Gaw.

‘Pit-pat answer’

Asked how she coping, she says: “I am knackered. I’m caring from their cradle to my grave. I am fed up fighting. I have written to everyone I can think of and I get the same pit-pat answer. They say they have done all they can; it’s the staffing crisis. People who aren’t in this situation do not realise how dire it is.”

She fears Harry and Tara may never access supported housing if even respite has been taken from them. “I’m in my 60s now. My husband and I, we’re not getting any younger. We try not to think about the future, because there is nothing. There is nowhere. All it does is stress me, upset me.”

In a joint statement, St John of Gods and the HSE said they were “working together to resolve this particular issue as quickly as possible”.

“Both services have apologised to individuals and family members and acknowledged the adverse impact this is having on those who rely on them for such services throughout the course of the year,” it said.

“We are working with the individuals and families affected by the respite closure to address any issues that this may present for them.

“HSE Disability Services and St John of God Community Services are committed to improving the service for persons with disabilities, and remedying the acknowledged historical deficits in provision, as quickly as possible through the available resources.”