Parents of autistic children battle bureaucracy of health system

An Ottawa mother's decision to leave her severely autistic son in the hands of a provincial services office has highlighted frustration among parents with the governmental support system. One Ontario woman sank $80,000 of her own money into building a business to help disabled individuals and their caregivers navigate the health care system.

One mother spent $80,000 to build business to help others navigate the system

Jim Witt, left, says it costs him $120,000 year to pay for care services for his severely autistic son Harrison, right. (Courtesy of Jim Witt)

An Ottawa mother's decision to leave her severely autistic son in the hands of a provincial services office has not only highlighted the difficulties of raising a disabled child, but also a growing frustration among parents with the governmental support system.

Amanda Telford said it was the personal exhaustion that resulted from a lack of government help that compelled her to leave her 19-year-old son, Philipp, at the office on Tuesday.

"My heart goes out to this woman," says St. Catharines, Ont., native Karen Maziar, whose son Gerard DeRoche is autistic. "I've been there."

Maziar found the system of government support so daunting that she sank $80,000 of her own money into building a business intended to help the caregivers of disabled individuals navigate the health-care system.

Maziar's son exhibited a learning disability and problems with his motor skills from the age of two.

At age nine, Gerard developed compartment syndrome, a medical condition in which pressure builds up in certain muscles, leading to swelling that can cause muscle and nerve damage. He ended up losing the muscle in the lower part of his left leg and needed a leg brace just to be able to walk.

After being previously misdiagnosed with attention deficit disorder, Gerard was eventually diagnosed with autism and an intellectual disability when he was 14.

For many of these years, Maziar was raising Gerard and his younger brother, Robert, as a single parent while also running her marketing firm. She cashed in $6,000 of her RRSPs to purchase things such as leg braces for Gerard, which at the time cost about $1,400 each.

"Through all this time, I didn't know about the Ontario disability program for children, I didn't know about the assistive devices program for children – anything like that," says Maziar.

It was only by overhearing a conversation while standing in a line at the bank one day that Maziar learned about some of the government support available to her.

She went home and researched the subject and in 2004 developed a website called Disability Advocate Gerard to provide an online resource guide of government services available to people with loved ones who have a mental or physical disability.

"Where do you go for help? Who do you go to? It shouldn't be that hard" to find resources, Maziar says.

Government says 'more needs to be done'

The advocacy group Autism Ontario reports that more than 100,000 families in Ontario have a member with autism.

Breanne Betts, a spokesperson for Ontario's Ministry of Children and Youth Services, acknowledges that some parents may not be aware of the full slate of available programs.

She says the ministry is working "to improve the way we communicate about our programs and services so that parents and caregivers are aware of the range of supports available to children with autism."

Until age 18, autistic individuals are eligible for services through the Ministry of Children and Youth Services.

The ministry's programs include intensive behavioural intervention (IBI), a form of therapy for severely autistic youth that involves between 20 and 40 hours of service per week, as well as applied behavioural analysis (ABA), which seeks to improve a child's communications and daily living skills and requires two to four hours a week.

Betts says there were 1,672 kids on a waiting list for IBI as of September 2012, and 5,184 waiting for ABA as of June 2012.

The provincial government spends $186 million a year on programs and services for autistic youth, Betts says, but recognizes "that more needs to be done."

Adult classification

At 18, a disabled individual is considered an adult and falls under the purview of the Ministry of Community and Social Services, which administers programs such as the Ontario Disability Support Program, which provides financial aid.

Since April 1, 2012, adults with a developmental disability have been funded through a single direct funding program called Passport. The Ministry of Community and Social Services reports that over 15,000 adults are currently receiving Passport funding, but as of December 2012, there are approximately 4,500 individuals on the waiting list.

In 2012, the provincial ombudsman's office launched an investigation looking at how the provincial government responds to disabled adults in severe crisis.

Ombudsman Andre Marin says the study was launched on the basis of 63 complaints, but that in the process of conducting its investigation, his office has registered more than 650 complaints.

"The case of Ms. Telford is not unique — in fact, it very much resonates with what we've been hearing," Marin told CBC Radio's The Current.

Many parents of autistic individuals are concerned about when their children turn 21, because at that age, schools no longer accept them as students.

Difficulty in securing care services

Jim Witt's 22-year-old son Harrison has severe autism, but during his teen years, Harrison was able to access care and specialized instruction through the public school system.

But once his son turned 21, Witt says there were no longer any government programs available to Harrison, who requires 24-hour supervision.

"You realize, my God, there is nothing out there for these guys. Absolutely nothing," says Witt, who lives in Oakville, Ont.

Witt is president of a company that manufactures wire and stainless steel products for the food services and health-care industries, and says he needs to earn $120,000 every year to pay for various private care services for Harrison.

"Right now, I have five workers working with him at different times of the week. And every day I get up I wonder, 'What's going to happen today? Can I even go to work today?' " Witt says.

It was out of frustration with a lack of government support that Witt helped form the ACiDO Autism Project, a committee comprised of parents, business leaders and academics that aims to find permanent housing solutions for intellectually disabled adults like Harrison.

Toronto parent Laurie Pearce knows this frustration. Her 18-year-old son, Devon McMahon, is autistic, and she, too, is concerned about the care arrangements she'll have to make when he turns 21.

She is also worried about the misinformation among parents about the programs that are available to them.

"I talk to parents of kids my son's age, who say, 'When he's out of school, we'll put him in a day program and, you know, he'll go in a group home. And it's like, 'Yeah? Where are you going to find that?'"