The human rights of many people with Down syndrome are being infringed by day care centres which give their clients DVDs to watch instead of offering adequate training or education, a survey launched by Down Syndrome Ireland (DSI) has found.
The Families' Views study by Joe Wolfe & Associates was commissioned after DSI noted a "significant rise" in calls from relatives expressing concern at the services being offered to their family members with Down syndrome.
Susan Clarke, independence officer with DSI, said the calls ranged from problems accessing transport "to clear infringements of people's basic human rights".
Some people surveyed described the day services as nothing more than holding pens, or baby-sitting services. One parent said her daughter was spending most of her time playing snooker.
May Gannon, counsellor with DSI, said there was no doubt that day service staff were very caring but there was evidence of "learned helplessness" where people with Down syndrome were literally having their hands held, instead of being challenged to learn more skills.
"We have had family members report to us that their family member can end up colouring, watching DVDs or even taking naps to pass the day," she said.
Report author Joe Wolfe said the most striking finding was the "marked inconsistency in standards". While 28 per cent of people said they were satisfied with day services, 40 per cent said the services were not meeting the needs of their relative. Some 44 per cent said the literacy and numeracy supports on offer were not adequate while 43 per cent of families said the training opportunities were inadequate. "There is clearly good practice going on but also there is the marked opposite of this," he said.
Some 58 per cent of families said there were not adequate employment opportunities for people with Down syndrome and in more than half of cases, the person with Down syndrome was not involved in choosing the day service.
Families also expressed concern about the possibility that their relatives might be exploited in an arrangement whereby they did contract work in day services but received little or no pay for it. The report has been sent to the Health Service Executive and DSI will be seeking a meeting with the HSE to discuss these issues, Michael McCormick, chief executive of the DSI, said. At yesterday's report launch, Kay O'Shea from Co Louth told of the uphill struggle to get a suitable day service for her son Brendan (23). After lengthy lobbying she was approved by the HSE to set up a "microboard" to cater for Brendan's needs.
This is a type of trust, made up of the individual's family and friends. They meet and draw up a plan for the person's needs and request the funding to implement the plan. This is a pilot project but the DSI is preparing guidelines for families and has drawn up a leaflet explaining the concept.
Ms Clarke said that, up to five years ago, there was a general feeling that independent living for people with Down syndrome was impossible. "Since the Special Olympics, the attitude has changed," she said. "People are starting to see their abilities rather than focusing on their disabilities."
