McGrath hears of families’ unhappiness with HSE disability services

Thousands of people with disabilities may be “languishing in the wrong service,” their human rights being violated, the Minister of State for Disabilities was told yesterday.

Finian McGrath, who was attending a seminar on personalised budgets for people with disabilities, heard families tell of how unhappy they were with the Health Service Executive’s disability services. Some said they felt “bullied”, “harassed”, “ignored” by the HSE.

Personalised budgets mean the person with the disability is provided with the funds to purchase services they want and need rather than the current model, dominated by residential and “day services” in group settings, provided by large disability services.

The person has little or no say in the services they get and how the money allocated for them is spent.

Difficult to access

Such personalised budgets, as called for by

Inclusion Ireland

and

Down Syndrome Ireland

, are available in

Ireland

on a small scale and are difficult to access. One mother described the difference a personalised budget had made for her daughter.

Rita Walsh

said her daughter

Helena

(26), who has Down syndrome, had flourished in mainstream school.

When her schooling finished, she was assigned a place in a day service.

Ms Walsh said her daughter’s behaviour changed – she began talking to herself throughout the day, was making hand gestures and was clearly miserable.

Ms Walsh gradually removed her from the day service and, with the personalised budget, she and Helena have tailored activities throughout the week that challenge her. She works a day in her old school, a day in a shop, she makes items to sell for fundraising and she does cookery lessons.

“We need champions in the HSE and within service providers to make this happen for other families,” she said.

Mr McGrath said he was fully behind personalised budgets and would establish a taskforce to examine how best to roll them out.

Different views

“I also want to see a seismic shift in how disability services are funded and provided. I am supporting personalised budgets in a very, very strong way. But I am also listening to you and to the parents on the ground. There are many, many different views on this issue.

“The establishment of a taskforce on personalised budgets is a key element in the programme for government. My initial view is that the taskforce should concentrate on personalised budgets for services for people with disability funded by the HSE in the first instance.”

Inclusion Ireland chief executive Paddy Connolly called for the taskforce to be established as a matter of urgency.

“The Government must ensure a percentage of HSE disability budget is ringfenced for individualised and community-based supports,” he said.

Dr Simon Duffy, director of the British lobby organisation Welfare Reform, said there would be resistance to individualised budgets, particularly from current service providers who would see them as a threat to their businesses.

Mr McGrath also announced that respite care grants were being restored.