Falling on deaf ears

While federal parties duke it out over who has the best economic plan to save the country from recession, a new challenge in the medicare system has presented itself.

The Autism Spectrum Disorder (ASD), a developmental disability beginning in early childhood, now affects one in 150 eight year olds, according to the latest data from the Centres of Disease Control and Prevention.

Programs helping autistic children function in society are, for the majority of Canada, under funded by the province and needs federal subsidies to adequately prepare to the growing demand of these services, according to West Islanders Litsa Kamateros and Lea Schizas co-authors of the upcoming book Autism Epidemic: Shaking the system.

“In 10 years we’re going to have a national crisis of double the amount (of autistic cases). If we don’t act now, it’s going to get a lot more expensive,” said Kamateros.

Currently, federal intervention cannot occur since autism is not included in the Canada Health Act. As the number of autistic cases increases, the federal government has attempted to amend the 24-year-old act. However, the cause has been met with some opposition on Parliament Hill.

In 2006, Ottawa -Rideau Canal Senator Jim Munson called for an inquiry in the senate on the issue. In his report 'Pay now or pay later' published in March 2007 called for the federal, provincial and territorial governments to hold a conference on establishing a National ASD Strategy which will include adequate funding and programs for autistic kids and their families.

Since then, Conservative Health Minister Anthony Clement has seen the report and has taken a few steps to improve the current condition of autistic children and their families, according to Munson. Among his initiative was increasing the Child Disability Fund to $2,300 from $2,044, as well as, commission his own report in 2006.Clement was not available for comment.

“(We are) absolutely not satisfied with the steps (Clement) has taken, he saw the report and continues to say the status quo,” said Munson. “This issue cannot be ignored as a federal government…People see (autism) as provincial jurisdiction, but autism has no borders so why put restriction?”

In the West Island alone 7,000 homes are touched by the disability. In order for families to cope with ASD, services must include ABA/IBI treatment, a form of therapy where kid’s behaviours are worked on through repeated drills, occupational and speech therapy may also be needed depending on their specific needs; and for families, respite care is essential for parents needing a break, seeing as taking care of an autistic child requires extra attention.

However, “in March 600 families were on the waiting list for a year or longer (to receive therapy in Quebec),” said Schizas. “The province offers $1,397 yearly, per family…ABA costs $30,000 per child. Then add in (programs that are not covered by the provincial government) like speech and occupational therapy, we’re talking parents paying $100-$300 a week for just one child, and they’re lots of families with two or more.”

Under perfect circumstances, autism can be identified by the age of three. However, the long waiting lists often prevent a child from being diagnosed until the age of four or five years old. In Quebec, funding for ABA treatment stops at six.

Although the province only pays a fraction of the cost for therapy, the cut off year can be detrimental if the child is on the lower-functioning side of the spectrum, since they require the most hours of therapy.

“The earlier the intervention, the better off (kids) are,” said Schizas. “Once the child reaches six years old does (the government) believe at seven they’re cured miraculously and just turn around? Or do they fund until six because these kids have no hope anyways? If that’s the train of thought it’s wrong.”

The problem found in Quebec can also be seen in Ontario where 1400 families are on the waiting list. However, in Alberta lies the exception. There, children are offered services until 18, and families are allocated $30,000 from the provincial government for their programs.

The unequal services offered across the country are causing families desperate for therapy to relocate out west.

“Because everybody is looking to Alberta, what’s happening is a lot of families are moving out there for the program, this creates an influx in the Alberta system and the actual Albertans are being affected because the system is being strained.” said Kamateros.

“People are moving east to west to get services not to get rich, there should be equal opportunity, I’ve heard of families separating over this,” said Munson. “This shouldn’t happen in Canada.”

The long waiting lists and parents having to relocate have caught the attention of a few members of parliament. During the last parliamentary session, NDP, Liberal, and Conservative MPs in the House of Commons attempted to push the government’s hand into improving autism related programs by introducing Bills C-211 and C-304 as well as motion M-172 in April, May and October 2007 respectively.

“(MPs from different parties worked together) and made this a non-political issue (because) autism strikes all forms. Everyone knows someone with autism,” said Peter Stoffer, incumbent NDP candidate for Sackville-Eastern Shore in Nova Scotia, responsible for tabling Bill C-211. The bill intended to include autism therapy in the Canada Health Act but has yet to be called for a second reading.

“Why he hasn’t done anything yet is beyond me, we consider this an investment not expenditure. The sooner we get a new health minister the better off we’ll be,” added Stoffer.

Bill C-304 brought forth by Liberal MP Shawn Murphy of Charlottetown, Prince Edward Island was defeated. His version went one step further to include a nationwide conference on developing a strategy for treatment. Only motion M-172 sponsored by Conservative Andy Scott of Fredericton, New Brunswick was adopted. The motion called for the government to create a national strategy, but no mention of provincial consultation or the Canada Health Act was made.

Parents on the waiting list can search for services elsewhere in the meantime, provided they know where to look. Alternatives in the West Island can be found as close as the YMCA and WIAIH where integration programs “have improved drastically over the years,” according to Erica Nadler, integration specialist at the YMCA summer day camp.

“(Camps) are part of the solution, it’s not one program or another alone that’s going to help the child,” said Nadler. “There’s not one program that works for every child, each is going to take away a little bit from different programs.”

For a listing of where to receive services in the Montreal area, visit www.autismcentral.ca.

To learn more about the upcoming book Autism Epidemic: Shaking the System, or to share your story and fill out a questionnaire visit, www.theautismepidemic.com.