Why respite care matters

For people with physical disabilities, respite centres provide supported holiday accommodation. But few places exist for those with intellectual disabilities

Ken Caulfield and Miriam McNamee: “The great thing about Cuisle is when you’re there, it feels like your disability goes away.”

Ken Caulfield and Miriam McNamee: “The great thing about Cuisle is when you’re there, it feels like your disability goes away.”

 

Bob Potter Coogan describes the supported holiday centre of Woodhaven, Co Sligo,  as a “godsend”: “I’ve had multiple sclerosis for half my life and the great thing about going to a place like this is that it allows me to be ordinary.”

Potter Coogan lives with his wife, Jill, in Co Mayo and spends a weekend at Woodhaven every six weeks or so. “It’s especially important for Jill, who is my principal carer,” he says. “She can go away knowing that I am in a place where I’ll receive as good care as I get at home.”

The supported holiday centre at Woodhaven, near Sligo town, was built following a long fundraising campaign by the MS Therapy Centre in the northwest. It opened in June 2014. As with most guests, Potter Coogan pays for his own accommodation when he stays there.

“Most people who go there have MS or another neurological condition,” he says, “so we have a huge amount in common. Some of us are more reserved than others, but we can pick and choose who we integrate with.”

Bob Potter-Cogan: “My wife can go away knowing that I am in a place where I’ll receive as good care as I get at home.”
Bob Potter-Cogan: “My wife can go away knowing that I am in a place where I’ll receive as good care as I get at home.”

The centre at Woodhaven offers a choice of single, twin/double and family rooms on a full/partial board or self-catering basis. It costs €75 per night for B&B and lunch. Mobility aids and appliances, call bells, holistic treatment room and specialist nursing services are available.

Cuisle in a castle

Cuisle is another supported holiday centre in the grounds of Donamon Castle near Roscommon town. It is the official Irish Wheelchair Association (IWA) national holiday centre and one of three centres run by the IWA. Open to people with and without disabilities, Cuisle is 100 per cent wheelchair accessible, including accessible transport and accessible fishing bays on the nearby river Suck.

Ken Caulfield and Miriam McNamee first met in Cuisle seven years ago and have been regular visitors ever since.

“I went there first with Ataxia Ireland. At first, I was very nervous because I never saw so many wheelchairs in my life,” says McNamee who uses personal assistants in her home in Ratoath, Co Meath.

There is a huge lack of respite facilities – particularly for young adults with complex needs and the HSE is aware of this

“The great thing about Cuisle is when you’re there, it feels like your disability goes away. The staff make me feel like I’ve no issues, yet they’ll help me with things that I usually do myself which is relaxing and comforting.”

Her partner vows not to “bore” me with their love story, but says “their love is as strong as ever since they met seven years ago.” 

Caulfield first went to stay in Cuisle in 2004 with Ataxia Ireland. “I had not been around many other disabled people,” he says, “and suddenly I was sitting in a bar with 30 others and 30 volunteers and the craic was unreal.”

This annual holiday with Ataxia Ireland has been stopped due to lack of funds, though Caulfield and McNamee continue to go to Cuisle every year on trips that are subsidised by the IWA’s Carmel Fallon Holiday Centre in Clontarf, Dublin.

“We use almost all the facilities when we visit, including the gym, bar, sauna, jacuzzi, etc and we go on day trips too,” says Caulfield, who works in the Irish Wheelchair Association headquarters in Dublin.

Cheshire Homes Ireland

Other organisations also provide short breaks for people with physical disabilities in centres in Kerry, Kildare, Limerick, Mayo, and Wicklow.

“People come for one night, a weekend, one or two weeks,” says Aileen Courtney, chief operations officer at Cheshire Homes Ireland. “All our respite beds are very well used. It gives people a break from home or from another residential centre they live in.”

The respite accommodation is provided at a nominal fee and arranged with the HSE, adds Courtney. “It’s planned in advance so we can arrange day trips or other activities for people once we find out what they want.”

Finding appropriate holiday breaks for people with intellectual disabilities, autism or other complex needs is much more difficult than for those with physical disabilities, according to Deirdre Carroll, independent disability policy analyst and former chief executive of Inclusion Ireland.

Complex needs

“There is a huge lack of respite facilities – particularly for young adults with complex needs and the HSE is aware of this,” says Carroll. Staffing costs, especially for weekend care, is another problem that has reduced the provision of respite for families in some parts of Ireland.

The word ‘respite’ often has negative connotations, but it should be a positive thing to offer a short break to your son or daughter 

The problem is not only the lack of suitable residential centres but that some of the so-called “respite” places get used for people seeking longer term accommodation. Some services, such as Praxis Care, are looking for suitable properties to open new respite centres for people with intellectual disabilities and autism.

Jacinta Walsh is keenly aware of the need for more respite care for young adults with complex needs. Her son, Sam (17), spends four nights away from home every month. But once he turns 18, these short breaks are no longer guaranteed. “Sam loves respite,” she says. “It gives him a change from us and gives us a break and means our other son, George [16], can have friends over. We can relax and live a bit of an ordinary life.”

Walsh says that if young adults with moderate-to-severe intellectual disabilities and/or autism had access to short breaks away from home, families could cope better and would be less likely to seek residential places for their sons/daughters until they are older.

“There are a lot of families throughout Ireland who need access to respite care,” she says. “The word ‘respite’ often has negative connotations, but it should be a positive thing to offer a short break to your son or daughter – and you should be offered more if that young adult has challenging behaviour.

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