Disability support organizations outline where the gaps in the system lie to members of standing committee of Island MLAs
TERESA WRIGHT
The Guardian
Families caring for adults with disabilities are suffering from a severe lack of resources and support, say disability assistance providers.
Representatives from Community Inclusions Inc. and the P.E.I. Association for Community Living made presentations to the province’s social development committee Wednesday outlining in detail where gaps in the system lie and how these gaps are hurting aging parents caring for their sons and daughters with disabilities.
“People in their 70s and 80s are caring for their family members,” Ethel Ellsworth, residential co-ordinator for Community Inclusions told the committee. “They live in fear that their family member will end up in an institution, that they’d be neglected, abused or that they’d lose their freedom.”
Community Inclusions operates a 24-hour care group home in Tignish for those who can no longer care for their sons and daughters at home.
But they have limited spaces. And although there are some in the community who provide respite care in their homes, over the last three years half of those people have stopped — due to lack of support and too much responsibility, Ellsworth said.
Many disabled require 24-hour supervision and are often sent to hospitals, seniors manors or community care facilities. Community Inclusions executive director Kevin Porter said these are often not appropriate options.
“People don’t have any kind of a say or a right, at least a lot of them, to where they’re going. And that’s just not right. That’s not inclusion.”
Ellsworth said people should be allowed to live at home if they choose and still be eligible to receive supports.
“People in West Prince are at a risk of living in institutionalized settings if proper supports and policies are not implemented.”
Bridget Cairns of the P.E.I. Association of Community Living said there is great need for future planning within these families to work out exactly what will happen to their disabled sons or daughters as they get older and after they pass away.
“One of the most disturbing comments I got from (the previous) government was, ‘Well, when is the crisis state,’” she told the committee. “We have 400 aging parents and 80 to 90 per cent of them do not have a plan.”
When Ellsworth interviewed families on the issue, they told her they don’t know where to start in planning for their children’s future.
“They don’t know who to go to or what to do to plan for the future of their sons and daughters. They sit at home and hope the best will happen.”
Cairns said it’s a generational issue. “That’s how they were raised and they think that’s their job. And to say that ‘I can no longer care for my child,’ is very difficult.”
Meanwhile, they receive no financial help from the province because persons with disabilities who live at home are not eligible for the Disability Support Program.
The province is currently conducting a review of the DSP. In the interim, aging parents are still caring for their sons and daughters at home without help, Cairns said.
“With their fixed income, they still say, ‘I don’t care if you don’t give me any money, you can’t put them into an institution.’ ”
The groups told the committee the province is in need of resources and support for estate planning and supervised or group home care for the disabled on P.E.I.
“We have pockets of services but we do not have a system,” Cairns said.
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