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Disabled B.C. Woman with Celiac and Other Diseases Battles Government for Care
Celiac.com 01/26/2012 - A Canadian woman is fighting a battle with the government of British Columbia to protect the services that allow her 18-year old daughter to live at home in Quesnel, B.C., with 24-hour care — much of it provided by Shelley McGarry herself.
The woman's daughter, Chelsea McGarry already has a long list of challenges — Down syndrome, autism, early onset Alzheimer's disease, diabetes, and celiac disease, among other conditions.
The problem is that Chelsea turns 19 in December, at which point her responsibility for her care transfers from Ministry of Children and Family to Community Living B.C., the government agency that provides services to adults with developmental disabilities.
Shelley McGarry says she's been battling for months with Community Living B.C. According to McGarry, Community Living B.C. has refused to approve the a plan for Chelsea. Moreover, the agency has threatened to reduce the minimal care Chelsea now receives, McGarry says.
"It just turns my stomach to think of taking this public," she said. "But I don't know where else or what else to do."
Independent provincial politician Bob Simpson and B.C. Representative for Children and Youth Mary Ellen Turpel-Lafond both say Chelsea's case is a classic example of Community Living B.C.'s failure to work with families and find solutions. Instead, they say, the agency is worsening the McGarrys' situation.
"This is a young woman whose life is in crisis," said Turpel-Lafond, who has been pushing Chelsea's cause since her family since Ausgust 2011, when they asked him to advocate on her behalf. Turpel-Lafond says that Community Living B.C.'s efforts have been lacking so far.
"I've written, I've met with the head of CLBC, I've done just about everything I can," she says. "I've said to them very clearly, 'This is a case that needs a review by you, she added'"
Simpson represents Chelsea and her family in the provincial legislature. He says that the family has followed all of the government's rules.
Shelley McGarry has thoroughly documented Chelsea's fragile medical conditions. She developed a plan with the local non-profit society, also known as a micro-board. McGarry arranged for Chelsea to receive home care for about $340,000 a year. That amount is far less than the CLBC's plan to put Chelsea in a care home capable of managing her complex needs.
Simpson called the plan that the McGarry's have offered the CLBC a 'very reasonable and appropriate plan.'
However reasonable that plan may be, the CLBC has refused to approve it. Worse still, their proposed alternatives would either be unsafe, or cost up to three times what it would to keep Chelsea at home, Simpson said.
Simpson says that he suspects the CLBC is punishing Shelley McGarry for her vocal and tireless advocacy on Chelsea's behalf. Simpson adds that he also suspects that officials, as he says they have done in other recent cases, have lost sight of Chelsea as a person.
Both Social Development Minister Stephanie Cadieux and Community Living B.C. have declined to comment on specific cases. However, Cadieux said in an interview that she is aware of the file, and that she has appointed a new client support team, which she hopes can resolve the matter.
"I agree that it needs attention," Cadieux said, adding that the new team includes a number of "high-ranking officials" from the Ministry of Social Development, and the Ministry of Children and Family Development.
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Jefferson Adams is a freelance writer living in San Francisco. His poems, essays and photographs have appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate among others.
He is a member of both the National Writers Union, the International Federation of Journalists, and covers San Francisco Health News for Examiner.com.View all articles by Jefferson Adams
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