Aging parents worry about disabled children

Enough said: http://ca.news.yahoo.com/aging-paren...075733044.html

When the stress and uncertainty of caring for her adult son becomes too much, Louise Drover makes an agonized plea to God.

"It comes to a point at nighttime when you have to pray that if nothing works out, that God will take him before he takes me. And that's a hard thing to have to pray at night.

"That is exactly how I feel. I love him dearly."

Drover, 61, lives in Blaketown, on Newfoundland's Avalon Peninsula, with her son, Graham. He is now 26, but a neuro-genetic disorder called Angelman Syndrome stalled his intellectual development at about the age of four.

The condition aptly named for its discoverer, British pediatrician Harry Angelman, gives Graham an unusually sweet and happy personality.

He does not speak and can't walk far on his own. He is prone to pounding on windows if he gets excited, so his family home is equipped with shatter-proof glass. He will need 24-hour care for the rest of his life.

Who will provide that loving, constant attention into the future is the question that gnaws at Drover and other parents like her across Canada.

She has been a single parent to Graham since her husband John died of a massive heart attack in 2009 at the age of 59. She has few family members who live close enough to help, she said.

"I have gotten sick here at night — very, very sick -- and I wouldn't phone an ambulance or a doctor … because, God, if they put me in a hospital what am I going to do? The one thing I don't want is for Graham to go in foster care or an alternate care home." More than anything, Drover wants Graham to be able to stay in the only home he has ever known with the help of 24-hour care.

Provincial officials have told her it's out of the question because of the cost, she says. But Drover says she will fight for what she called her son's basic rights.

"He cannot speak for himself, so I will have to be his voice. And what I'm saying is that he deserves to have a choice to live at home."

Drover fears that Graham could wind up being misplaced with seniors in a nursing home or among virtual strangers in the community.

"I've seen really good homes and I've seen some that … weren't that good. I would not want my son there," she says.

In Newfoundland and Labrador, the search for details on abuse of vulnerable residents under adult protection required access to information requests to four different health authorities.

Copies of reports received by The Canadian Press outlined 23 complaints across the province of physical, sexual, emotional or financial abuse that were deemed founded and investigated in 2009 and 2010.

Most complaints involve allegations that caregivers abused clients who were sometimes their own family members. But there are also several complaints of incidents between residents or attacks on staff. Most of the reports involved what the province calls alternate family care homes or private residences. Specific locations were not disclosed for privacy reasons.

"Staff person at an Individual Living Arrangement allegedly hit a resident in the face," says one 2009 report from Eastern Health, the province's largest health authority. The documents say charges were laid with the RCMP and the agency worker was fired. "Legal process is ongoing," the records say.

"Client indicated respite worker knocked client down, pulled hair and smacked client," says another 2009 complaint filed with Eastern Health. The document says the respite worker was fired.

The records describe repeated incidents around the province where alternate family care homes were closed or stayed open with conditions after reports of physical and financial abuse.

The documents also say several abuse victims wound up being removed and placed in long-term care or nursing homes.

Jerome Kennedy, the province's health and community services minister, declined through a spokesman to comment on either the documents or concerns raised by families and advocates.
Ray McIsaac, acting president of the Newfoundland and Labrador Association for Community Living, says the province has come a long way since people with disabilities were shut away in institutions.

"I think it's an unqualified success in terms of nobody ever asks to go back or to reopen those types of facilities," he says.

It's the right of people with disabilities to live in communities with the support they need to enjoy life as a full citizen, he adds.

But McIsaac warns that recent progress is threatened by a lack of government funding.
"I think it's fair to say that across the country there is a need to invest more money for sure into supporting people to live in their own homes in the community."

Otherwise, "there is a threat that we will repeat history and start to see people moving back into institutional and partly institutional types of living arrangements like personal care homes and nursing care homes." McIsaac says in Newfoundland and Labrador — a province that was a national leader in the shift to community living from institutions —there are signs of backsliding.

"You're hearing about more and more people finding themselves, because of the lack of options and choices ... in places that they don't belong.

"If somebody is in their 40s, they have no place being in a personal care home or a nursing facility. That's an inappropriate public response to the needs of people."

Liberal Leader Yvonne Jones says the problem is very real.

"I am aware that more people are being put into long-term care facilities at a younger age because there aren't other options for them," she says.

"I know that there are younger people that are being hospitalized until other forms of care can be found for them. And I'm also aware that many families feel that they don't have the support to care for their loved ones for a long or extended period of time."

Jones says community care home operators in the province have told her they need more funding and properly trained staff.

"They are unable to continue to provide an adequate level of care to persons with physical and intellectual disabilities without getting more supports from the government."

As for 24-hour care, Jones says the province has funded such requests in the past to allow people with disabilities to live independently.

"There's a precedent for it."

The most recent provincial budget for Newfoundland and Labrador commits new money for long-term care and community support.

But McIsaac says amounts such as $1.1 million to increase monthly home support subsidies are "token" measures.

"It's nowhere near what we need."

Lori Weeks, an associate professor affiliated with the Centre for Health and Aging at the University of Prince Edward Island, has researched families caring for loved ones with intellectual disabilities.

She co-authored a study published in September 2009 of 132 families in P.E.I., including in-depth interviews with 33 parents.

Many parents talked about the joys of having children who are dearly loved in their communities, Weeks said from Charlottetown.

But they also described the financial and emotional stress of raising kids who will never leave home.
"There's definitely a huge need for more financial support for these families."

Ottawa has provided some affordable housing help that has made a difference in various provinces, Weeks says.

Most parents hope that if they get sick or frail, their child will live in a small supervised home with a family environment — not an institutional feel, she says.

Others wish for a long-term care home that offers both senior services and programs geared for younger people with disabilities, so the family could stay together.

Louise Drover desperately wants to convince provincial officials that her son Graham should get help to stay in the house that was specially built for him. He has panicked during failed attempts to have him spend the night with family or friends, she says.

If something happens to her, Drover wants Graham to at least have the comfort of home.

"This is where he has lived all his life. This is where his memories are."