Ontario plan for wait lists for Autism children therapy

Post Reply New Topic

The Ford government has launched a plan to tackle lengthy waiting lists for autism therapy, with the aim of clearing the province-wide backlog within 18 months.

Some 23,000 children diagnosed with autism spectrum disorders are waiting for government-funded treatment in Ontario, while just 8,400 are currently in the program receiving therapy. Government officials say this freezes out three-quarters of the kids who need treatment, promising that the reforms announced Wednesday will help to address the problem.

While MacLeod said tackling the existing waitlist is the government's priority, she also announced a plan to double the province's investment in autism diagnostic hubs. The hubs currently receive $2.75 million in annual funding.

There are some 2,400 children in line for assessment and on average they wait 31 weeks, according to government figures.

The PC government will also provide direct funding to families with autistic children.

MacLeod said those families will now be eligible to receive up to $140,000 per child until the age of 18. That money will be front-loaded, she explained, since children experience the most need at younger ages.

The government will act on 14 out of 19 improvements requested by the Ontario Autism Coalition, government sources previously told CBC News. They said funding to the program will not be cut.

Ford government officials spoke scathingly about the program they inherited from the Liberals, calling it "atrocious"

"They burned through the money and still 24,000 kids are not getting services," said one. "We are very confident that our system is certainly more sustainable; it's certainly more fair to all families and it actually responds to concerns we've heard from parents themselves."

Still, the PCs are bracing for criticism from parent activists who they believe will likely oppose the changes.

"We're prepared to face whatever criticism they throw at us because it was quite frankly utterly morally and ethically unacceptable to us to leave those 23,000 kids on the wait list," said the senior government official. "If they choose to attack, we're very comfortable, because we know we're doing the right thing."

That terrible wait is the piece of this challenging health care file that the Ford government decided to tackle by doubling the funding to get kids assessed faster and handing money directly to families to clear the waitlist for autism services within the next 18 months.

If the government could actually deliver on that promise — and it seems impossible given the shortage of qualified professionals in the system — this new direction would provide some immediate relief to families in need.

But it comes at an incredibly steep price for all kids with autism down the line. And those with the greatest need are at particular risk of getting far less support.

And it provides even more cause for concern about the Ford government’s plans for broader health care reforms.

All the government has done is to distribute the current $321-million budget for autism services among far more people. That means less support and services for everyone who is eligible. And not everyone is eligible anymore, since the government has decided to deny families with incomes over $250,000 the right to even access this aspect of publicly funded health care.

According to the Ford government’s theory of health care funding, a budget that currently provides services to 8,400 kids with autism can, somehow, be stretched to provide quality services for more than three times that many.

Under the new system, families will get a lifetime budget to go shopping for the services they think their kids need. The minister calls it giving parents the power to choose, but it doesn’t — and especially not for those with children on the high-needs end of the spectrum.

That’s because even families with the lowest incomes and youngest kids, who qualify for the maximum $140,000, will blow through all that with just two years of intensive therapy.

Then what?

Autism families kept up the pressure on Social Services minister Lisa MacLeod on Friday, staging a noon-hour rally outside her Barrhaven constituency office for the second consecutive week.

The money the province is offering — $140,000 lifetime funding for children under age six and $55,000 for older kids such as Braydon, with annual caps of $20,000 a year — is inadequate, St. John said.

“I think it’s a slippery slope if they start saying, ‘We’ll get rid of the wait list by giving you money. Go find your own health care.’ Where does it end? It doesn’t sound very Canadian to me.”

Other parents at the rally, some of whom brought their children along and carried signs saying “No more lost generations” and “I deserve to learn,” spoke of their fears about what would happen when the funding their children’s therapy ended.

MacLeod, who met with parents at last week’s rally, was not in her office on Friday. Speaking to reporters at another event in Ottawa, MacLeod reiterated that the government was doubling funding for diagnostic hubs to get children diagnosed sooner, eliminating wait lists and directing funding to parents for treatment, respite, caregiver training or technological aids.

However, families at Friday’s protest said they had been told little of how the new system would work.

Social Services Minister Lisa MacLeod says she can’t recall whether she said it would be a “long four years” for an association of behaviour analysts if it didn’t support the government’s changes to autism programming in the province.

The Ontario Association for Behaviour Analysis has alleged MacLeod told them it would be a long four years if it did not publicly support the revamped autism program, which the group contends will leave many children without adequate levels of therapy.

In the wake of calls for her resignation, the long-serving Nepean MPP had taken to Twitter on Thursday and said it had been “an emotional time” and, “I apologize if my comments made anyone feel threatened or uncomfortable.”

The Association for Behaviour Analysis, meanwhile, has acknowledged her apology. The group says emotions do run deep when talking about support for children with autism, but the issue is most emotional for them and their families.

The group says it acknowledges that MacLeod now regrets her comments, but it is confused that her office had continued to criticize their association over the past few days. (A spokesperson for MacLeod said this week the association had been “unwilling to work with the government.”)

Parents, Opposition politicians and critics have been calling for MacLeod to resign, but the behaviour analysts say they’re not interested in seeing the minister lose her job, only that children get the care they need.

The association, parents and advocates say that because funding under the revamped autism program is based on age and not individual need, many children will not get appropriate levels of treatment.