On the spectrum, Part 2: Why treating autism is so astonishingly expensive in Ontario

ANALYSIS: Some sell their homes. Some quit their jobs to provide therapy full-time. For parents of children with autism in this province, arranging for effective treatment can be a huge financial burden
By Matt Gurney - Published on April 10, 2019
Hundreds of demonstrators gathered outside Queen’s Park on March 7 to protest the provincial government’s changes to Ontario’s autism program. (Frank Gunn/CP)

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This is Part 2 of a three-part TVO.org series on autism in Ontario. Click here to read Part 1.
As the autism debate continues to rage in Ontario, TVO.org is speaking with medical experts, therapists, and parents of children with autism. The goal: to understand why this condition is so difficult to diagnose and treat — and to determine why two consecutive provincial governments have found it so difficult to develop effective policy solutions.

On Tuesday, we discussed the basics of autism itself — what it is, when it presents, and the toll it takes on children with autism and their caregivers, as well as what progress is being made in treating it. Eric Hollander, a world-leading autism expert based in New York City, told me that, while there are some encouraging signs that medications may soon be able to help treat at least some aspects of the disorder, at present, the only real treatment is intensive, personalized therapy.

“The issue, really, is to personalize the treatment; people may respond to different treatments,” Hollander, director of the Autism and Obsessive Compulsive Spectrum Program at the Albert Einstein College of Medicine, said in a recent interview. “If you intervene early, then you have a chance to change the developmental trajectory.” He elaborated: “You need to assess what are the key target symptoms that cause distress or interfere with functioning and then target the appropriate symptoms, and it differs from individual to individual.”

This targeted treatment can work. In the first part of this series, I shared with you the story of Ivy Milligan, a young woman who was diagnosed with autism at age four. She’s now 11, and her mother, Sarah Jones, told me that you wouldn’t be able to tell Ivy had autism if you put her in a room with neurotypical girls her age. Ivy’s younger sister, Gwen Milligan, though more severely affected by autism, has also shown progress thanks to intensive treatment — her family is hopeful that she will be able to begin going to school full-time in the fall.

That’s great news. But bad news comes with it: targeted, personalized, intensive therapy is astonishingly expensive.

The day I began working on this series, I was at home; the TV news was on quietly in the background as I assembled notes and drew up a list of possible interviewees. I’d barely been at it 10 minutes when the news cut away to a mother of a child with autism. She was protesting at Queen’s Park, saying she feared that if the Doug Ford government’s then-proposed (and, since, partially implemented) changes were to go ahead, her family would have to sell their home to pay for private treatment.

Such stories, I’ve learned, are common (a quick Google search turns up many). In fact, for patients who need intensive, full-time therapy, the cost can approach $80,000 a year — for year after year. Not many Ontario families have that much after-tax income available for what could be a decade-long process of treatments. Fascinated and appalled, I set out to discover why autism treatment is so expensive.

The answer, it turns out, is surprisingly simple: intensive therapy for autism sometimes means a one-to-one ratio of therapist to child. That means one family has to bear the full cost of a therapist’s employment. They essentially hire a person, full-time, for years — sometimes through an agency or care centre, sometimes directly. It costs a fortune.

Nancy Marchese knows this system inside and out. A psychologist, she’s been working in the autism field in Ontario for more than 20 years. She oversees treatment programs for autistic children. Some children, she explained, don’t need the full-time, intensive treatment that lasts for years. Marchese noted, as Hollander did, that, for many children, a targeted course of therapy — to work on overcoming a repetitive behaviour or social barrier — can be successful, with no further structured therapy required.

“It doesn’t matter where a child falls on the spectrum,” she said — Level 1, 2, or 3. “Their needs need to be assessed. And when we assess these, we look at what are their strengths and where are the gaps in their skill set.” Areas of need are addressed in small groups or, when necessary, one on one.

I asked Marchese to walk me through what this actually looks like. If an observer in a room were watching an investment worth $80,000 a year, what would they see?

She paused before answering, wanting to get it right. It really is different in every case, she stressed. Picking a representative example to summarize an entire population is an almost impossible task. But, after she gathered her thoughts, she said: “We take a challenge that a child faces, a skill that they need, and we break it down into small steps. Repetition helps all of us learn skills, but how many repetitions a child with autism needs is, again, highly individualized. We take data; we look at trends. But when we’re practising [a skill] with a child, we capture their interest, practise it in a fun way, and break it down until they’re successful. Every triumph is celebrated with a little party.”

To help me understand the daily grind of autism therapy, Sarah, the mother of Ivy and Gwen, described some of what her daughters did. Ivy is a Level 1 — mild impairment. Her therapy was limited and highly targeted. An example: Ivy spent 10 weeks practising losing at games and not being the first in line — she struggled with not being first at anything. She also had a speech therapist, who worked with her on social skills. The costs of this therapy were relatively modest — a few thousand dollars a year.

Gwen, a Level 2, presents a more complicated case. Starting at age two, she had six hours of therapy at home every week, paid for entirely by her family, at a cost of approximately $1,000 a month. She practised completing very basic tasks. In an email, Sarah described some of what Gwen worked on between the ages of two and four: “She was working on very, very basic skills, like being able to recognize and group similar items — for instance, a picture of a cat with a toy cat, being able to say single words and use those words to ask for things or answer simple questions or make choices. She also worked on some of her major sensitivities — she struggled to allow nail trimming, hair washing, and hair brushing, and personal care, like dressing and toileting.”

At five years of age, with provincial funding available, Gwen began to receive 20 hours of treatment per week. The cost, fully covered by the Ontario government, was $63,000 per year. Gwen, having made progress, is now down to 15 hours per week, still covered by the province. That works out to $48,000 per year.

Research has shown that children with autism benefit from early and intensive intervention — outcomes for them are typically better than they are for children who are forced to wait for treatment. Though Hollander stressed that it’s never too late to start, it’s still the case that delays have measurable impacts. But the financial burden of therapy is, as noted above, massive. This is why families have sold their homes to free up cash. This is why the mother of Andrew Dineen, a boy with Level 3 autism whose father I spoke to for the first part in this series, has quit her job as a teacher — so that she can personally provide their son with the therapy he still needs.

I asked Marchese where the bottlenecks in the system are. If the province gave, no questions asked, every family in Ontario exactly how much money they wanted, I asked, what would happen?

Ontario “could throw all the money in the world at this,” and it wouldn’t solve the problem, she said. “We do not have the capacity in Ontario. We don't have enough board-certified behaviour analysts. We don’t have enough front-line staff to properly deliver treatment. We just don’t have enough people.”

I asked: Are we almost there? Falling just short? Nowhere close? Somewhere in the middle?

“Ontario actually is, outside of the U.S., the highest per capita in terms of trained behaviour analysts,” she replied. “But we need a lot more.” She said that since there’s no way to know how severe the needs of the children still on the waiting list are, she can’t really estimate what the optimal number of staff would be — they wouldn’t know until they tried.

“But we don’t have nearly enough,” she concluded — not even close.

How long to get them, I asked? Again, assuming endless money, how long for Ontario to get the therapists it needs?

Marchese sighed. “Years,” she said, rattling off the typical progression: “Undergrad. Master’s. Two years post-MA work under supervision, getting your hours. Some programs let you do your hours while getting your master’s, but not all. And there’s not enough supervisors, anyway. We need more of those, too.” Marchese is a supervisor herself; she said she gets inquiries all the time from people looking to become therapists, but she simply can’t take them on. She’s at maximum capacity.

How to get more supervisors and more therapists — and how to fund the ones we have — is at the core of the debate that has now forced the Progressive Conservatives into at least a partial retreat. And that’s where we’ll pick up on Thursday.

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