Lisa MacLeod, minister of children, community and social services, said sweeping changes are necessary to clear the therapy wait list of 23,000 kids within 18 months and make the program fiscally sustainable.
“Today, almost three out of every four children who require autism supports continue to be stranded on wait lists,” she told reporters at a Feb. 6 news conference in Toronto. “We are introducing reforms to provide them with the fairness and equality they deserve.”
The Star consulted experts, advocates and government officials and websites to answer some questions about autism and what lies ahead for Ontario families.
Five regional centres across Ontario, including Holland Bloorview Kids Rehabilitation Hospital in Toronto, have behaviour analysts who are specially trained to diagnose children from about age 2.
Evidence shows that when children start behavioural intervention between ages 2 and 5, they gain improvements in cognitive and language development, are better prepared for school and have better long-term outcomes in adulthood, the ministry notes.
There are currently 2,400 children waiting — many for up to two years — for a publicly funded diagnosis from one of the five diagnostic hubs. Families unwilling to wait can pay for a diagnosis from a trained professional.
What is the government doing about the wait list for diagnosis?
The government has doubled funding for diagnostic hubs to $5.5 million over two years to ensure children are being diagnosed in a timely way.
How many children in Ontario have autism?
The latest research shows roughly 1 in 66 Ontario children have autism, or about 40,000 kids under age 18.
How many children are being treated now?
About 8,400 children are receiving needs-based treatment funded by the Ontario Autism Program, set up in 2017 by the previous Liberal government.
What is the bill for taxpayers?
The annual budget is $321 million. The government added an additional $100 million this year. But MacLeod has said it is one-time funding and changes are needed to make the program fair for families and sustainable for taxpayers.
What is Applied Behavioural Analysis, or ABA therapy?
ABA is the most effective evidence-based treatment for children with autism and is used with varying intensity, depending on a child’s needs.
The therapy uses repetition and positive reinforcement to help children master life and social skills, such as dressing and having a conversation. In intense intervention, therapists work one-on-one with children to break down skills into small teachable steps. Once a skill has been mastered, the therapist works on helping the child use the skill in a natural setting.
For example, a child may be taught to request a favourite toy during a therapy session and then be encouraged to repeat the skill during a play date.
How much does it cost?
Children diagnosed with moderate to severe autism may require between 20 and 40 hours a week of ABA therapy, which can cost between $50,000 and $80,000 a year.
What is a Board Certified Behaviour Analyst (BCBA)?
A BCBA holds a master’s degree in a related field such as psychology, behaviour analysis or education. To become “board certified,” — an American certification — individuals must complete about two years of formal training in behaviour analysis, 1,500 hours of supervised practice and pass board exams.
For some children, ABA therapy is overseen by a clinical supervisor with a PhD in behaviour analysis or related field.
How is the government planning to clear the therapy wait list?
Instead of needs-based funding for a few children, managed by regional service agencies, the government will give money directly to all families so they can choose the services they want.
Funding will be capped based on age and targeted to lower- and middle-income families.
How can the money be used?
Unlike the previous program that limited public funds to evidence-based ABA therapy and parent training only, families will be able to use the money on “behavioural services such as assessments and consultations, family/caregiver capacity building and training, respite services, technology aids, and travel,” the government’s website says.
Does the government regulate behavioural therapists like nurses and doctors?
No. By April 1, the government will create an online list of “verified qualified service providers” that will be available to help families access behavioural services, according to the website. Before April 2021, families can work with clinical supervisors who are not on the list, as long as they are working towards their qualifications. After that time, all clinical supervisors will have to meet program qualifications.
How will families get their money?
Currently, parents apply to one of nine regional autism service agencies for either publicly funded behaviour therapy, or for funding they can use to buy services from private clinics. The amount of therapy or direct funding a family receives is based on the severity of the child’s diagnosis and the behaviour plan drawn up by a recognized professional. Families are served in order of their application date.
Under the new model, families will receive autism program funding through an independent intake agency which the ministry says will be set up within the next year. The new agency will help families register for the program, assess their funding eligibility, approve their “childhood budgets” and help them choose which services to purchase.
Families will no longer need a behaviour plan because funding will be based solely on their child’s age and household income.
Starting April 1, kids under age 6 will receive up to $20,000 a year. Those over 6 will get $5,000 a year. Childhood budgets up to age 18 will be capped at $140,000 for kids entering the program under age 6 while lifetime funding for those entering at older ages will be limited to $55,000.
Funding will be income-tested with more money going to lower-income families. Although the ministry has not yet said what family income would receive the full amount, households above $250,000 will no longer qualify for funding.
Eligibility and the amount of funding a family receives will be reviewed annually, according to the ministry website.
Details on how families will receive their funding, eligible expenses and the reconciliation process will be available by April, 1, according to ministry officials.
How will the program be managed until the new intake agency is set up?
Starting April 1, government officials will help families register for the new childhood budgets, although it is not yet clear how they will get access to the wait lists, which are currently held by the nine regional service agencies. Nor is it clear how newly diagnosed children will be registered.
“All these details are still being worked out and will be available before April 1,” a government official said.
What happens to the 8,400 families already receiving publicly funded services?
New behaviour plans will continue to be developed until March 31, according to the government. If existing behaviour plans end after that date, government officials will help families apply for a childhood budget.
Ministry officials say there are no plans to put children currently receiving support back onto a wait list. All children who have a behaviour plan will continue to receive the services outlined in that plan until the plan’s end date.
Any money families have already received through the Ontario autism program will not be deducted from the new childhood budgets.
Families with questions can call the province’s toll-free autism services line at 1-888-284-8340 or consult ontario.ca/autism
Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb