Change in services provided to profoundly disabled teenagers ‘totally unfair’ says Carers Association

The discontinuation of day services in Stewarts Hospital in west Dublin for 11 teenagers with profound disabilities is “totally unfair and really unthinkable”, according to the Carers Association.

The families of the young adults, who have either recently turned 18 or are about to reach adulthood, were informed by the HSE that they would not receive day services from September onwards.

They are currently taken to Stewarts Hospital five days a week where they receive physiotherapy, occupational therapy, education, one-to-one training and other social activities.

According to the Carers Association, they have been offered instead just 10 days of community-based care a month without transport.

Head of communications Catherine Cox described the alternative services being offered as "piecemeal", adding that community care provided "no real structure, routine or essential therapies".

“There is no transport being offered with this proposal which makes it impossible for many of the families to avail of same,” she said.

“We are calling on the HSE to sit down with these parents immediately to try and work out a solution that is realistic and meets the needs of these young people.”

In a recent Dáil question, Minister of State for Disability Kathleen Lynch said demand for services for young people with disabilities completing their education or life-skills training continued to grow, with the HSE anticipating that more than 700 new places would be required this year.

In a statement last night, the HSE said it was working with voluntary service providers, including Stewarts Hospital, Palmerstown, to address the situation of 2013 school leavers and those exiting rehabilitation training.


CASE STUDY
"It's an absolute nightmare. I cannot imagine how we are going to cope," says Moira Skelly.

Ms Skelly’s daughter, Ciara (18), a young woman with profound disabilities, has attended day care services at Stewarts Hospital in Palmerstown, a centre for people with intellectual disabilities, since the age of four. Ms Skelly, along with the parents of Ciara’s 10 classmates, has been told by the HSE that come September, fulltime day care places for their highly dependent children will no longer be available.

“When we signed up with Stewarts, we were told she’d be there from cradle to grave, that we need never worry and that the State would always look after her. It was a complete shock to us when we were told this wouldn’t happen.”

Having developed normally up to the age of six months, Ciara’s epileptic seizures became uncontrollable. Her ability to sit up and to interact, along with the sounds she had started to make, stopped.

“Because she had seizures from such a young age, her brain became more damaged. She developed a form of cerebral palsy and now her right arm doesn’t work at all, she has quite a pronounced limp and curvature of the spine,” says her mother.

'Very challenging'
Ciara also has autism. "Her behaviour is very challenging. Her psychological assessments say that mentally, she is about the age of a two-year-old."

From September to June, five days a week, Ciara has attended Stewarts where she has benefited from physiotherapy, occupational therapy, one-to- one training and social activities. Last year, Ms Skelly said, those turning 18 continued to be cared for by the service, but not any more. The service is being cut to 10 days a month of community-based care with no transport.

With Ciara currently on her school holidays, Ms Skelly knows what the lack of service will do to Ciara, and to her. “Her behaviour is a huge problem when she doesn’t have her day service because she gets so bored. I’m finding it more and more difficult to cope. My worry is that I won’t be able to cope.”

She has to wash, dress and feed her daughter and change her nappies. “I have to hoist her into the bath, I have to lift her to wash and dress her. She’s the same weight and height as I am. I’m finding it very difficult to cope.”

She says that when parents can’t cope, the Government will end up putting children like Ciara into more costly institutional care.

'Last resort'
"And that's the very last thing any parent wants to do. It's the very last resort," she says, her voice cracking with emotion.

“I can’t believe the Government could ignore these children. It’s like they are second- class citizens and have no rights.”

JOANNE HUNT