TORONTO — It doesn't add up.
The Ontario government claims it's making historic investments in services for children with autism. But parents say they're being short-changed, that their children will be denied treatment to help them learn basic skills like how to speak, how to get dressed and how to brush their hair.
"It's devastating," Nancy Marchese told HuffPost Canada in an interview. "Many of our families have had sleepless nights."
Marchese is a psychologist and a board-certified behaviour analyst. She supervises programs at Breakthrough Autism in Richmond Hill, Ont. and has done this type of work for more than 20 years.
It's possible to design a cost-effective program that helps kids across the spectrum, Marchese said. Some U.S. states have already done it.
In 2010, Missouri passed a law that requires group insurance plans to cover treatments for Autism Spectrum Disorder. Last year, companies there paid out US$16 million to help 3,687 kids. Families are allowed to claim up to US$46,000 per year, but the average family only claims around US$4,800. Kids who get applied behaviour analysis (ABA) therapy, one of the many forms of therapy that are covered in Missouri, are no longer eligible when they turn 19.
The change in law has drastically expanded access to services — 99.8 per cent of people with insurance are now covered for autism treatment — without raising the price of premiums, the state's Department of Insurance, Financial Institutions and Professional Registration says.
Autism treatment represents just 0.32 per cent of total health costs claimed in the state.
Families without access to private insurance plans through their employer, however, would be left to pay out of pocket.
The problem with Ontario
Ontario's Progressive Conservative government, on the other hand, just promised to spend a whopping $321 million to support 31,518 kids for one year. Compared to those Missouri insurance companies, the province is spending almost twice as much per child, and many critics say that families with high-needs children won't be able to afford satisfactory treatment with that money.
Families in Ontario could get up to $20,000 a year until the child turns six and $5,000 a year after that until the child turns 18. Families will be cut off after they've used $140,000 total. These figures are only for households that earn less than $50,000 a year — everyone else will receive less, based on their income.
Watch Minister Lisa MacLeod's announcement. Story continues after video.
Ontario's Ministry of Children, Community and Social Services told HuffPost it looked at 14 jurisdictions in North America, Australia, Asia and Europe while designing its program.
Officials decided to follow the lead of Saskatchewan, B.C., Australia, the U.K. and the Netherlands in providing fixed amounts to families that they can spend on whatever they'd like.
"Family budgets are becoming more common in human and social services delivery to create a family-centred approach with choice and control for families and competition among providers," the ministry said.
The approach falls short, in Marchese's view.
She said Missouri's system holds important lessons for Ontario.
Missouri system is needs-based with strict oversight
First, service providers must be certified in order to practice. They follow strict rules for billing and have to justify a child's treatment plan with assessments and data. They have to submit a progress report and reassess the child's needs at regular intervals.
"What often happens for a lot of kids is that there's a period of intensive intervention and then over time because the children are improving, the number of treatment hours that are recommended does decrease," Marchese told HuffPost.
"That's how a needs-based system can be fiscally responsible. Not every kid is getting 40 hours [of therapy or treatment] a week."
When Ontario starts doling out money based on a child's age and their family's income, some households will get more funding than they need, Dr. Julie Koudys told HuffPost. She is a clinical psychologist and chair of the ethics committee for the Ontario Association for Behaviour Analysis (ONTABA).
That's definitely a poor use of taxpayer dollars.Julie Koudys
"Right now, the arbitrary use of funds based on age is absolutely inefficient," she said.
"That's definitely a poor use of taxpayer dollars."
And in Ontario, therapists don't have to be certified to practice ABA or intensive behavioural intervention (IBI), another common form of therapy for people who have autism.
The publicly-funded system has requirements for supervisors of certain types of therapy, Dr. Koudys said. But that's not the same as a regulated system.
As a clinical psychologist, Dr. Koudys is regulated by a college and has to follow rules for every aspect of her practice.
"That is the level of regulation that ONTABA and the majority of parents in the community support for behaviour analysts."
If therapists followed regulations for how they assess clients, how many hours of therapy they recommend and how they bill for their time, the government would save money, Dr. Koudys said.
You wouldn't go to a cardiac surgeon that wasn't licensed in his field.John Guercio, licensed behaviour analyst
John Guercio, a licensed behaviour analyst in St. Louis, told HuffPost that the benefits of having a licensure system go beyond money. It is also key to protecting families from malpractice and abuse.
"You wouldn't go to a cardiac surgeon that wasn't licensed in his field," he said. "You really can't measure the amount of protection put in place with licensure."
He said he understands that governments nowadays are focused on saving money, but the cost of implementing regulations are worth it to protect vulnerable populations like people who have autism.
Ontario's Ministry of Children, Community and Social Services told HuffPost that it will post a list of verified providers online in April to help families find qualified supervisors for behavioural therapy.
The ministry is also considering broader oversight along with the Ministry of Health, the statement said.
Virginia lifts age limit
In Virginia, legislators just lifted the age cap on services altogether. Insurance companies must now provide coverage for people with autism for their entire lives.
This extended coverage to about 10,000 people, NBC reports.
"It's pretty phenomenal," Marchese said.
She said that extending coverage to people of all ages makes financial sense, because those who don't get treatment for their autism end up needing more costly health care in the long-run.
More from HuffPost Canada:
For some people who have autism, getting check ups at the doctor and dentist can be really challenging. Those who get therapy and learn how to cope have an easier time accessing the other types of care they need, bringing costs down over time.
"I personally have had children with severe challenges with dentistry, to the point where they have to be put under in order to fill cavities that families didn't even know they had, because it's been years since their child got a dental checkup."
'It's a win-win'
If those children can learn how to cope early, their families or insurance companies or governments will save money later on, she said.
"It's a win-win for everybody. From a financial side, we save money. If you look at it from a humanitarian side, you have individuals who are more independent, more happy and can contribute to society. Those are all great things for everybody."
Dr. Koudys agreed.
She said people who don't get treatment early on could end up needing expensive emergency room visits, psychiatric placements, and are more likely to come in contact with police and the justice system.
"If people want to be able to say that they are saving taxpayers money right now, getting the deficit down right now, their children are going to pay for this choice. Because someone at some point in time is going to have to pay for those services," she said.
"And in the meantime, they've ruined a child's and a family's life."
With a file from The Canadian Press