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Parents Leave Autistic Son At Government Office; Say They Can’t Care For Him Anymore
May 1, 2013
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ottawa-parents-leave-autistic-son-at-government-office-say-they-can't-care-for-him-or-keep-him-safe-feature1.jpg

A family in Ottawa has made a "heart-wrenching, gut-wrenching" decision regarding their 19-year-old developmentally disabled son.

Amanda Telford and her husband brought their son Phillip to an Ontario government agency office and left him there, because they say they can't care for him anymore or keep him safe.

"I felt dizzy, nauseous, upset, I've spent a very teary-eyed day today; this hasn't been a very fun thing to have to do," Telford told CBC News.

She said her son has a severe form of autism and functions at the level of a two-year-old. He also has Tourette's syndrome, can't speak and has Type 1 diabetes which requires insulin.

ottawa-parents-leave-autistic-son-at-government-office-say-they-can't-care-for-him-or-keep-him-safe-feature2.jpg Telford (left) said she's reached out to provincial and Ottawa city agencies for help, as well as her local member of Parliament and member of the Ontario legislature.

Everyone, she said, dealth with them respectfully and professionally. But no one could come up with a long term solution, because the system is stretched too thin and is under-funded.

"My husband and I are absolutely exhausted and medically unwell," Telford said. "I am not able to do this anymore."

The couple says there just aren't enough services to help families taking care of adults with developmental disabilities. And as they grow older, they have their own health concerns, and felt they had no other choice.

Anne Borbey-Schwartz, an Autism Ontario caseworker, told CBC News the Telfords are not alone.

"This family is very brave, first of all," Borbey-Schwartz said.

"(They) represent many families across the province, if not across the country, that are facing aging adults with autism, with a variety of needs, with very little support and very little services."

Late last year, The Toronto Star's did a feature segment called the Autism Project - an effort to document autistic lives in all their many stages.

The Star said it found "parents in despair, children languishing on wait lists for up to four years, and families overwhelmed by paperwork and bureaucracy. Many remortgage homes or borrow from relatives to pay for private therapy, which can cost as much as $60,000 a year or more."

In February, Ontario's Attorney General Jim McCarter announced an unprecedented review of children's autism services, with a report expected this December.

He told The Star "It's becoming an increasing expenditure, it's in the public interest and we haven't really touched on the whole issue in a good seven or eight years."

"We felt it was time to have a look at it."

The Star said it also documented "a severe shortage of services and supports for people of all ages on the autism spectrum. But intervention in the early years is considered key because young brains are more malleable. Research has shown treatment has the most impact between ages 2 and 7.

Yet children wait between one and four years, depending where they live, for intensive behavioural intervention covered by the province, The Star found. It means too many don't get treatment when it is most effective."

Telford took her son to the Ottawa office of Developmental Services Ontario, which helps adults with disabilities find services in the community.

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She said Phillip needs constant supervision because he doesn't have a sense of danger about cars, traffic and general society rules. He also wanders off, so the family has to sleep near the doors of their house to make sure he doesn't leave.

A few days ago, Telford said Phillip slipped away and ended up near a busy intersection four kilometres away. He also swallowed 14 pills for high-blood pressure and had to be hospitalized for seven hours on Monday.

He also needs nursing care for his diabetes, bathing and using the washroom. And his diet has to be closely monitored, to keep his blood sugar levels safe.

Telford told CBC Radio's Ottawa Morning that she's received "passport" funding from the province, but it's been frozen for eight years. And with the cost of living, it now only lasts about six to eight months.

She said Phillip was taken to a hospice in south Ottawa, where he's been on and off in the past few years and has enjoyed. But the hospice only offers short-term, emergency care.

Telford said it's now up to the provincial government to find a permanent place for him to go, which she hopes can be done by Friday.

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