For the first time ever at CHEO, parents will be asked for a bank card so their children can receive autism treatment services.
CHEO released a spring and summer guide to autism services Wednesday that includes a fee-for-service price list — including $3,360 for 40 hours of intensive applied behavioural analysis therapy to $300 a week for a school readiness program.
Parents say the cost of many of the services listed in the new guide far exceeds the childhood budgets for families of children with autism in Ontario. Parents are expected to begin receiving those budgets to purchase services directly in the coming weeks.
Under the revamped program, families with children under six would receive $20,000 a year and families with children six and over would receive $5,000 a year to buy autism services directly, including from CHEO and other centres.
“Families are going to be paying some pretty big bills, if they’re lucky enough to be able to scrape up the money,” tweeted economist Mike Moffatt, an Ottawa father of two young children on the autism spectrum, after seeing the guide.
CHEO’s 2019 spring and summer guide is part of the provincial revamp of the way autism treatment services are offered to children, a program redesign that more than two months after it was announced by the Ontario government, has left many parents with more questions than answers. Although the new program has started, the province is set to begin consultations in coming weeks that might lead to extended funding for children with more complex needs.
In the midst of the uncertainty, CHEO has had to put together a list of programs and services with a fee list, as required by the new program. It ranges from intensive, ongoing therapy to school readiness programs and family workshops lasting a few hours.
As part of the revamp, CHEO, which had previously offered autism treatment services paid for by the provincial government, becomes a service provider from which parents can directly purchase services with money given to them by the government. Some parents had already been directly purchasing autism services with government funds, but from private contractors.
Charging money for such services is uncharted territory for CHEO, said hospital CEO Alex Munter.
“We are used to people handing us an OHIP card, not a bank card, so this is a whole new world for us and it will raise clinical, financial and ethical issues,” said Munter. “Our goal always is to put kids first and to work with our families to do the best we can within the structure that we have.”
Kerry Monaghan, an Ottawa mother of two young children on the autism spectrum, said she was struck immediately by the cost of the services being offered at CHEO and especially the fact that health budgets being offered by the province will not come close to covering many of them.
“It is pretty expensive,” she said.
Monaghan noted that some behavioural therapy services being offered at CHEO amount to $84 an hour. Over 50 weeks, that amounts to $84,000. For the intensive therapy programs, families must sign on for a minimum of 12 weeks, she noted.
“That would exceed the childhood budget automatically putting parents on the hook to spend out-of-pocket.”
Some parents say the provincial funding will only cover two weeks of treatment at CHEO.
In addition, the spectre of a public hospital listing fees for services previously covered by the province is raising concerns.
“We are looking at a program with CHEO’s name on it that is fee-for-service,” said Monaghan. “Autism is a complex and severe neurological and developmental disorder. It should be treated like a health-care need and here we are being asked to pay for it.
“Is this a slippery slope where we are going to start seeing price tags on health-care services in Ontario? I would have been more comfortable if CHEO’s name wasn’t on this.”
The program is funded under the province’s Ministry of Children, Community and Family Services. Lisa MacLeod, the cabinet minister in charge of the autism portfolio, said earlier this month that the province would hold consultations and set up an advisory council to look at “needs-based funding” — meaning more funding for children with the highest needs. The program, as it currently stands, offers the same amount of funding to everyone and will remove tens of thousands of children from waiting lists.
Munter said CHEO is looking for feedback, and patience, from parents.
“This is the first time at CHEO that we have had to develop a fee schedule for clinical services. Obviously we are not trying to make money, this is about covering our costs. We have never done this before, so we are probably going to make mistakes and not get it entirely right. We are asking for patience as we learn.”
CHEO will hold information sessions on May 2 and May 7 from 6-8 p.m. simultaneously at 1002 Beaverbrook Rd, and at 2280 St. Laurent Blvd. RSVP is required: firstname.lastname@example.org.