Autism controversy, confusion and what lies ahead for Ontario families

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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

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Ford won’t ask Lisa MacLeod to resign after group says it was pressured to support revised autism program

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Ontario Premier Doug Ford says he won’t be asking his social services minister to resign after an association of behaviour analysts said she pressured them to support changes to the province’s autism program.

Ford says he hasn’t spoken with Lisa MacLeod about the allegations made by the Ontario Association for Behaviour Analysis but has already ruled out asking her to quit cabinet.

The group says the minister told the association it would be a long four years for them if they did not publicly support the revamped autism program, which they say will leave many children without adequate levels of therapy.

Ford stood by MacLeod when asked about the matter on Thursday.

« I never ever, I want to repeat that, ever, ask Lisa to resign, » Ford said. « She’s done an incredible job. »

MacLeod’s office has not denied the group’s allegations and has said its priority is supporting families of children and youth with autism.

The head of province’s largest public sector union, opposition politicians and parents of autistic children are calling on MacLeod to resign over the matter.

NDP Leader Andrea Horwath said if MacLeod doesn’t quit, Ford should force her out.

« Lisa MacLeod is supposed to be a voice for children and parents at the cabinet table, » Horwath said in a statement. « Instead, she’s threatened them. »

Ontario Public Service Employees Union president Warren (Smokey) Thomas said he was appalled by reports of MacLeod’s actions and called for her to step down.

« I can’t tell you how disappointed I am in Lisa MacLeod, » he said in a statement. « It’s unbelievable she would bully others to pay lip service to Doug Ford’s attack on autistic children. »

MacLeod announced last week that in order to clear a backlog of 23,000 children waiting for publicly funded autism therapy, families will get up to $140,000 to pay for treatment, though funding will be subject to annual caps that families and advocates say will fall far short of what’s needed for intensive therapy.

The funding is dependent on age, rather than individual needs. Families will receive a maximum of $140,000 for a child in treatment from the ages of two to 18, also dependent on family income, but advocates say intensive therapy can cost up to $80,000 per year.

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Children’s minister Lisa MacLeod urged to resign over accusation she bullied autism group

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Ontario’s largest public sector union and the NDP education critic are calling on Lisa MacLeod to resign, saying her behaviour toward an autism group was akin to bullying and inappropriate for a cabinet minister.

The Ontario Association for Behaviour Analysts said MacLeod — who is minister of children, community and social services — pressured them to provide a quote in support of changes to the province’s autism program, but without details they refused.

A spokesperson for Lisa MacLeod said the group levelling accusations against her was unwilling to work with the government on changes to the system.
A spokesperson for Lisa MacLeod said the group levelling accusations against her was unwilling to work with the government on changes to the system.  (Chris Young / THE CANADIAN PRESS FILE PHOTO)

They say MacLeod then told the group it would be a “long four years” if they didn’t.

A senior source in MacLeod’s ministry who is familiar with all meetings with ONTABA said different representatives attended the fourth and final meeting, and the tone had changed. The source said the ministry had been led to expect public support from the group.

The source said he “did not recall” MacLeod making such a statement.

A spokesperson for MacLeod said ONTABA was unwilling to work with the government on changes to the system.

On Thursday, Warren (Smokey) Thomas, head of the Ontario Public Service Employees Union and New Democrat Marit Stiles said MacLeod should step down.

In a statement, Thomas said “I can’t tell you how disappointed I am in Lisa MacLeod … It’s unbelievable she would bully others to pay lip service to (Premier) Doug Ford’s attack on autistic children.”

On Twitter, Stiles said: “From our most vulnerable children& youth, to women & families fleeing violence, Minister Lisa MacLeod has consistently made decisions that cause them harm. As we head back to Queen’s Park next week, I’m hoping she does the right thing: #ResignLisaMacLeod.”

At a news conference in Woodbridge on Thursday morning, Ford said he had yet to speak to MacLeod about the controversy, but would — in part to ensure reports on the issue are “factual.”

Ford, however, also said he would “never” ask MacLeod to resign. “She’s an absolute all-star … she’s done an incredible job” on a difficult file, he told reporters.

A memo Wednesday to ONTABA members said of the Jan. 29 meeting: “The minister and her staff requested that ONTABA provide a quote of support, without providing full details on the program, and indicated that failure to do so would result in ‘four long years’ for the organization.

“The minister also indicated that if a quote of support was not forthcoming, a communication that behaviour analysts are ‘self-interested’ would be released from her office … In spite of the implied risk, the organization refused.”

One analyst who attended said it was “more akin to meeting with a mob boss than an elected official.”

The rift with ONTABA is part of an escalating division between the Ford government and some in the autism community in the wake of the Progressive Conservatives’ system overhaul, which MacLeod has pledged will make funding more equitable and clear the massive wait list for services within 18 months.

While several service providers and hospitals issued public endorsements of the plan after it was announced, parent support group Autism Ontario — which was praised for supporting the changes by MacLeod — released a statement Tuesday saying the organization “neither proposed nor endorsed” the revamp.

Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy

Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb

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Autism group says Ontario minister warned of 4 ‘long’ years if they didn’t publicly back changes

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An association of behaviour analysts says Ontario’s minister in charge of the autism program told them it would be a long four years for them if they did not publicly support recent changes.

The Ontario Association for Behaviour Analysis says in a note to members today that Children, Community and Social Services Minister Lisa MacLeod and her staff requested a quote of support a few days before the new program was announced.

They say the request came without providing full details of the new program — which they say will leave many children without the level of therapy they need.

The association says MacLeod and her staff indicated that failure to provide a supportive quote would result in « four long years » for the organization.

MacLeod’s office did not immediately provide a response. MacLeod announced last week that in order to clear a backlog of 23,000 children waiting for publicly funded autism therapy, families will get up to $140,000 to pay for treatment, though funding will be subject to annual caps that families and advocates say will fall far short of what’s needed for intensive therapy.

The funding is dependent on age, rather than individual needs for varying levels of intensity. Families will receive a maximum of $140,000 for a child in treatment from the ages of two to 18, also dependent on family income, but advocates say intensive therapy can cost up to $80,000 per year.

Families will receive up to $20,000 a year until their child turns six. From that time until they are 18 it would be up to $5,000 a year.

 ‘We were expecting more’ 

MacLeod also reportedly told the Waterloo Region Record that Autism Ontario was among the organizations that support her plan, but the group released a statement saying that isn’t true.

« Autism Ontario neither proposed nor endorsed the announced changes to the (Ontario Autism Program) and is concerned about the impact these changes will have on children and families accessing the program, » it said in a statement.

The president-elect of the Ontario Association for Behaviour Analysis said when her group met with government officials ahead of the policy announcement, they were disappointed in the tone.

 « Our meeting with the minister’s staff and the minister was prescriptive in nature, basically letting us know the direction of the changes, » said Kendra Thomson. « We were expecting more of a collaborative consultation process, given the gravity of the file. »

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Autism group says minister warned of ‘long, hard four years’ if they didn’t support changes

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Behaviour analysts say children’s minister Lisa MacLeod and her staff threatened to make their lives miserable for the next four years if they didn’t endorse the government’s changes to autism services.

In a memo to members Wednesday, the board of the Ontario Association for Behavioural Analysts said “the minister and her staff requested that ONTABA provide a quote of support, without providing full details on the program, and indicated that failure to do so would result in “four long years’ for the organization.”

It went on to say that “the minister also indicated that if a quote of support was not forthcoming, a communication that behaviour analysts are ‘self-interested’ would be released from her office … In spite of the implied risk, the organization refused.”

One analyst who attended the meeting said it was more “akin to dealing with a mob boss than an elected official.”

The rift with ONTABA is part of an escalating division between the Ford government and some in the autism community in the wake of its overhaul to the system, which MacLeod has pledged will clear the massive wait list for services in two years.

Parents of children with autism are also feeling bruised by the government’s dismissal of the Ontario Autism Coalition, a grassroots Facebook group of parent advocates, as “professional protesters.”

A senior source in the community and social services ministry said staff had met with ONTABA four times — and had provided details of the coming changes, and was under the understanding a supportive quote was planned. However, the source said, different representatives attended the final meeting and the tone changed.

The government “had a number of productive and cordial meetings” with the therapists as well as others in the autism community, from parents to service providers, said the source.

The source did not recall MacLeod saying that should the group not provide public support, rocky relations would ensue.

“She certainly said that we are committed to this plan,” said the source.

Several service providers and hospitals provided endorsements of the plan.

Meanwhile, the government faced more opposition from Autism Ontario, which said despite ministry claims, the organization will not be managing intake or dispersing money to families over the next year while the province overhauls autism funding.

Autism Ontario said its statement is aimed at correcting a “number of misunderstandings or assumptions,” since the government announced age-based funding caps to clear a therapy wait list of 23,000 kids, the organization said.

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The organization came under fire from angry parents last week when MacLeod suggested Autism Ontario was playing an integral part in her government’s plan to shift control of provincial funding for autism services from regional agencies to parents.

In at least one media interview, MacLeod said Autism Ontario will be directly involved with the new funding regime.

Under the changes announced by MacLeod Feb. 6, children with autism up to age 6 will receive lifetime caps of up to $140,000 until age 18, while those over age 6 will get $55,000. Funding will be aimed at low- to moderate-income families with those earning more than $250,000 no longer eligible, she said.

But parents, whose noisy protests in 2016 convinced the previous Liberal government to reverse a similar age-based funding scheme, say the Progressive Conservative plan makes the same mistake. They say the new funding falls woefully short of meeting the needs of children with complex needs whose therapy may cost as much as $80,000 a year. And it may be too much for others. It will likely mean cuts to 8,400 children currently receiving help with no funding cap, they add.

In a statement, ministry officials confirmed Autism Ontario will not be directly involved with the wait list or the funding.

Autism Ontario has been supporting families and people with autism in Ontario for the past 46 years and has parent representatives across the province through 25 local chapters, said spokesperson Katharine Buchan. It supports and advocates on behalf of both children and adults with autism through workshops, training and individual support, she added.

Social media attacks against the organization’s staff and volunteers, many of whom are also parents with autistic children, have been difficult, she said.

One part-time Autism Ontario staffer in a local chapter, who is a mother of an autistic child, called police over what she felt were threatening Facebook posts from another mother, Buchan confirmed.

“The anger is justified, but I’m not sure it makes sense to be directing it at one another when we need to be working together ensure that all children’s needs are met,” she said.

NDP Leader Andrea Horwath said the government should not be “labelling groups of parents who are doing their best for their children as professional protesters.

“It’s despicable. Shameful.” she added.

“They are using these tactics to try to besmirch these parents, parents who are very worried about their children,” she said in an interview

She called analysts’ claim they were pressured to endorse the autism overhaul “strong arming professionals in the autism field, trying to knuckle them down and prevent them from providing their professional opinion on the government’s changes.”

Kendra Thomson, the incoming president of ONTABA, said her organization was not provided with any details about how their profession would be regulated, and because they weren’t told what the government’s planned registry would look like, they could not publicly support it.

As for allegations ONTABA is a lobby group, she said it is a non-profit that represents a number of professionals and promotes evidence-based services.

She also said the group was not “meaningfully consulted” on the autism changes, and despite the discord, “if we were given the opportunity to provide meaningful conversation, that would surpass the tone and anything (communicated) to date.”

She said ONTABA’s representatives left that final meeting feeling very disappointed, though “the tone was consistent with previous meetings with myself and others.”

Louis Busch, a past-president of ONTABA who attended the final meeting with the minister and her staff, said he went as a “private citizen” and that it was a tense meeting from the outset, unlike any he has attended with the past five ministers to hold this portfolio.

Busch, a board-certified behaviour analyst who works with adults, said after pressing for details, they were told a regulatory college would not be announced, but a website would provide a list “which is not regulation.”

Busch noted that MacLeod said without public support from ONTABA, “it’s going to be a long, hard four years for you.”

“This was more akin to meeting with a mob boss than an elected official,” Busch said.

Meanwhile, at a Wednesday announcement on Ontario’s fiscal situation, Finance Minister Vic Fedeli said there will no additional funding for autism services beyond the $321 million announced last week.

“There were 23,000 families with children with autism who received no help whatsoever, so this plan is a fair, sustainable, and equitable plan,” said Fedeli, noting it has been well-received in his hometown of North Bay.

“We all don’t have the same services that are readily available in the south, so we’ve delivered on that. That’s why at home they’re very happy with this plan,” the treasurer said.

With files from Robert Benzie

Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb

Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy

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Ford government autism program overhaul met with outrage by some parents who fear kids will lose out

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Parents of children with autism will be given the power to choose what services they want — but there will be a total family budget of $140,000 and high-earners will no longer be eligible.

In an announcement Wednesday in Toronto, Lisa MacLeod, the minister of children, community and social services, also said the government is doubling funding for diagnostic hubs and planning to clear the 23,000-child wait-list within the next 18 months.

Waiting for a diagnosis — which currently can take more than two years — can “throw a family into crisis,” said MacLeod.

“This is the best approach and the most fair approach to make sure every single child” is well-served,” she added.

The amount of funding will depend on the length of time a child will be in the program, and support will be targeted to lower- and middle-income families. Families with annual incomes above $250,000 will no longer be eligible for funding, MacLeod said.

“It ignores the fact that there are some kids on the severe end of the spectrum requiring tons of support and time and those on the mild end” who don’t, said Kirby-McIntosh.

“I’m diabetic and so is my husband, but it doesn’t make sense to give us the same amount of insulin.”

She said she’s “terrified” about means testing. Just because families are making more than $250,000 “doesn’t mean they have $80,000 lying around in the couch cushions.”

She said she was “devastated” by the direction the government is headed.

In her announcement, MacLeod said the government is doubling funding for five diagnostic hubs to $5.5 million a year for the next two years to address the diagnosis waiting list of 2,400 children, who currently wait on average for 31 weeks.

“Today, almost three out of every four children who require autism supports continue to be stranded on wait-lists, due to the cynicism and incompetence of the previous government,” MacLeod told reporters at Holland Bloorview Kids Rehabilitation Hospital, one of diagnostic hubs.

“The parents of these children have told me they are feeling abandoned. We cannot, in good conscience, continue treating these parents and children like lower-class citizens, so we are introducing reforms to provide them with the fairness and equality they deserve.”

Parents of children with autism launched protests against the previous Liberal government in the spring of 2016 when it announced that kids over age 5 would be cut off from funding for intensive therapy.

The Liberals ultimately backed down and installed a new minister — Michael Coteau — to roll out a new program, which proved to be much more popular with parents.

Coteau announced more funding, a quicker start date, no age cut-offs, and a direct funding option to allow parents to either receive funding to pay for private therapy or use government-funded services.

Wednesday’s changes announced by the Progressive Conservative government include establishing a new agency to help families register for the program, assess their funding eligibility, distribute the money and help them choose which services to purchase.

Clinical supervisors will have to meet program qualifications by April 1, 2021 and the government will be publishing a list of verified service providers.

With files from The Canadian Press

Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy

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Ford government to overhaul autism services, give cash directly to families

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The Ford government is planning to overhaul children’s autism services by taking money away from regional agencies and putting funding directly into the hands of families to choose the care they want, the Star has learned.

Major autism service providers have already been informed of the changes that will also address the massive wait-list of 23,000 children and target money and services to those under the age of 6, which research has shown to be the most crucial time for treatment.

Funding will not be cut, but redistributed, sources told the Star.

An announcement is expected in the coming days.

“I would applaud them — early intervention is really important,” said one service provider. “These kids get on a wait list, and they miss a key window.”

“Everyone in the sector would be happy to support something that improves the wait list,” the provider said. “But we are not sure how they are going to change the wait list.”

Senior government sources told the Star the Ministry of Children, Community and Social Services is going to focus on the wait lists — for diagnosis, funding and treatment — as well as providing more equitable services and better oversight of therapy providers.

“The scope of the problem we inherited — this was a significant problem,” said one source, noting three of four children are currently not receiving the autism supports they need, calling the wait lists “unconscionable.”

“Those are valuable days, weeks, months, and the one piece of science we know in this area … is that having behavioural intervention below the age of 6 is when you make the biggest impact and have the most likelihood to make a difference,” said the government source.

Many parents like the idea of choosing where the funding is spent, rather than having to deal with service providers who can be in a conflict-of-interest when they control the funding. The current system is a mix of the two, with agencies controlling the wait lists and who gets the money.

But rumours the Ford government is planning to move back to funding based on age have struck fear in both clinicians and families, said Tracie Lindblad, clinical director at Monarch House, an Oakville clinic that offers services for children with developmental disabilities, including applied behaviour analysis (ABA) therapy for kids with autism.

Lindblad says Monarch House, which also has clinics in Waterloo and Ottawa, as well as British Columbia and Saskatchewan, has experience working with families in B.C. where the government imposes arbitrary funding caps based on a child’s age. And, she says, the approach is failing.

(In B.C., children under 6 diagnosed with autism spectrum disorder receive $22,000 a year for autism services while those between the ages of 6 and 18 get $5,000, regardless of their needs.)

“We know it’s not working there. Why would the Ford government want to bring it here?” she asked.

Lindblad said the previous Liberal government was “on the right track” when it increased funding and extended eligibility for ABA beyond age 5, and allowed parents to choose between agency-based therapy or privately purchased services.

Milton mom Maria Garito doesn’t like the current system — she does not believe service providers spend money efficiently — but nor does she think moving to a direct-funding model for parents is the answer.

Her 4-year-old son Max has been on a wait list for more than two years and right now her family can’t afford the behavioural therapy he needs, so she takes time off work to care for him and they pay out-of-pocket for speech therapy and other programs.

A direct-funding system means “some children get many hours of service, and many children get none,” said Garito, who believes it is open to abuse. She also doesn’t think there are enough services as is for families to spend any money they receive.

“The worst part of this model is that many of the private centres sign off on unnecessary services, because they (stand) to make profits knowing full well the government” will pay hundreds of thousands of dollars, she added, wondering if money would be better spent on more staffing and programs — and better oversight — of government-funded regional centres.

New Democrat MPP Monique Taylor, her party’s children services critic, said direct funding is not an option for everyone. “In Northern Ontario — the services just would not be available … they have nowhere to spend (the money). That’s a real issue in smaller communities in the north.”

And she said stressed families don’t have the time, knowledge “or the energy to be an employer,” which is what the direct-funding option would essentially entail. “For a lot of reasons, a lot of families just won’t be able to manage. It’s very concerning.”

Lindblad said the new Ontario Autism Program, introduced by the former Liberal government, while successful in some areas, failed to provide government regulation of autism professionals, no quality assurance oversight or peer review of outcomes.

But those are things that could have been fixed, Lindblad said.

“I am concerned we’re going to go from one mistake to another mistake and not achieve our goal of ensuring all individuals achieve their best outcome,” she said.

A PC government source said oversight of professionals will be part of the coming changes. “There’s no list that says where you should go for service” as there is in other jurisdictions like B.C.

In 2016, the Liberals had pledged $533 million over five years for autism.

Minister Lisa MacLeod announced $100 million in emergency funding after the PCs took office, to keep the system going, which government sources describe as “verging on the brink of bankruptcy.”

“The most responsible way to use publicly funded dollars is to consider each child’s need,” said Nancy Marchese, a psychologist and ABA therapist in Richmond Hill, adding that a “rate card” for services would protect families and ensure public funds are spent responsibly.

The parent-led Ontario Autism Coalition stormed the Legislature in 2016 under the previous Liberal government over age-based funding caps, and coalition president Laura Kirby-McIntosh, said her group will fight any provincial move to the B.C. model.

PC MPP Amy Fee, in an opinion piece for the Star, said “early diagnosis will be one of our key areas of focus.”

“We need to respect families. We need to work to clear these wait-lists and put the decision-making back in the hands of parents. We need to get the youngest children into autism services as soon as possible.

Fee — who has two children diagnosed with autism spectrum disorder — is the parliamentary assistant to MacLeod and has spoken to parents across the province about services.

“We’re going to put families in control, and bring equity to a broken system,” she wrote.

Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy

Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb

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Mother of adult with autism calls Alberta’s support system ‘broken’

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A Calgary mother says she can no longer take care of her grown son with developmental disabilities, and she’s been fighting for years to get the provincially-funded support he needs to live on his own.

Lisa Matthews describes her 24-year-old son, who has autism, as gentle, artistic and fun-loving. But at six feet three inches and 450 pounds, Nicholas Matthews also faces many challenges.

« I’m afraid I’m going to find him dead in his room, » she said.

Lisa says her son struggles with depression and an eating addiction, and he spends most of his time in his bedroom working on art projects.

There have been violent outbursts and he has even attempted suicide.

« For 4½ years, we’ve been begging and pleading to get help to get Nicholas living outside of our house. »

Nicholas Matthews’ parents say they’ve been waiting for a supportive living arrangement for him through Alberta’s PDD program for more than four years. (Submitted)

While they do have funding for help inside their home, the family has been asking the province — through its Persons with Developmental Disabilities program (PDD) — for a supportive living arrangement so Nicholas can live on his own with some help.

But, according to Lisa, they’ve been faced with a barrage of setbacks, including high turnover of PDD staff. Nicholas has had six different caseworkers in four years.

« The system is a mess. There’s too much turnover. There’s too much transition … it’s broken, » she said.

To make matters worse, Lisa and her husband, Art, say they’re now struggling with physical and mental health problems they attribute to chronic stress. Art has heart problems, which required triple bypass surgery a year ago, and Lisa struggles with depression and a health condition that is still being investigated by doctors.

« [I’m] feeling helpless and hopeless because I don’t know where we go from here » she said.

Long waits a growing concern

A decade ago, Lyndon Parakin, executive director of Autism Calgary, would hear from one or two families a year in this situation.

He now hears from as many as five families per month.

« Unfortunately it’s becoming more common, » said Parakin, adding he worries about the toll these long waits for service can take on individuals and their families.

« Sometimes matters get so bad that they’re having to go to the hospital to get some help because there’s risk of harm to themselves and others, » he said.

« It becomes wearing. Your own mental and physical health is at risk, » said Parakin.

Parakin says the province needs to create a better way of transitioning people with autism to different types of care and supports as parents age or are no longer able to cope.

Lyndon Parakin, executive director of Autism Calgary says long waits for supportive living arrangements through PDD are becoming more and more common. (Jennifer Lee/CBC)

Province responds

According to the province, 60 to 70 Albertans are currently eligible for, but not receiving services through the PDD program, which is currently under review.

« [It] would not be my experience that things take that long. If the family needs supports, we would be looking to provide supports as soon as possible, » said Roxanne Gerbrandt, executive director of the disability services branch with the department of community and social services.  

She says four years is not a typical wait for a supportive living arrangement.

« How long that takes to find a right match can depend person-to-person based on the uniqueness of their needs or even the complexity of their needs, » she said.

Other factors can also play a role in wait times, according to Gerbrandt, including specific location requests, requirements that a home be on one level, safety concerns, and finding the right supportive roommate.

« Sometimes we can offer family supports that they may or may not choose to accept, » she said.

‘I’m done. I’m so tired’

While it won’t discuss specific cases, it appears the province has a different account of how long Nicholas Matthews has been on the wait list.

In a recent email to Lisa, a government official stressed the PDD team has been working with the family for just over a year to find a supportive living arrangement and that a possible placement was identified earlier this year, but turned down.

According to Lisa, they were concerned the placement wasn’t a good fit and were unable to arrange a time to view the home.

Several hours after CBC News first requested information about their case, the province contacted Lisa about two more potential homes, but she says neither worked out and the search continues.

If a home isn’t found soon she says she may consider a drastic step — dropping her son off at a police station or PDD office.

« [We] can’t continue on the way we’ve been going. I’m done. I’m so tired, » she said.

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