Families plead with Province to restore autism funding

Families plead with Province to restore autism funding
SIMCOE—Residents of Haldimand and Norfolk gathered outside Toby Barrett’s office on Friday, March 1, 2019 to protest changes to the Ontario Autism Program. The program is designed to get kids off the waitlist for services, but parents say they will be unable to make up the funding shortfall, threatening their children’s future. —Haldimand Press photo by Kaitlyn Clark.

Local schools, service providers brace for changes to Ontario Autism Program

By Kaitlyn Clark

The Haldimand Press

HALDIMAND—Parents of autistic children have begun province-wide protests, including at the office of Haldimand-Norfolk MPP Toby Barrett on March 1, 2019, after the government of Ontario announced changes to the Ontario Autism Program (OAP) recently.

“Right now, 75% (of Ontario’s autistic children) have no access at all, with zero service and funding,” said Barrett, noting that the changes are designed to eliminate the waitlist of about 23,000 children within the next 18 months. However, many parents feel the changes mean children will not have enough therapy covered to make a real difference.

Starting April 1, 2019 OAP will provide “Childhood Budgets” directly to families of autistic children until age 18, rather than to regional service providers, to purchase eligible services on a fee-for-service basis. The funding will be age and income based. The government’s website notes that a child entering at age two would be eligible for up to $140,000, or an average of $8,750 a year. A child who enters at age seven is eligible for $55,000 ($5,000/yr). Children under six are eligible for $20,000 of their childhood budget per year, and at age six this is reduced to a maximum of $5,000 a year. Only families with an annual household income of $55,000 or less will be eligible for a full childhood budget; those above will be assessed on a sliding scale up to $250,000, at which point they are ineligible.

Protest organizer Leah Kocmarek’s son, Owen, was diagnosed in June 2018. He entered the OAP through REACH in August: “We were told the next intake for early IBI (intensive behavioural analysis therapy) would be in the new year, when they’d do an assessment … We waited, waited, waited. Then two weeks ago they announced the changes and we found out they had frozen the waitlist.”

“It makes me angry and it makes me sad for my son,” continued Kocmarek. “The bottom line is that Lisa MacLeod needs to come back to the table to talk to all of the stakeholders … We need a plan that is sustainable, equitable, and long-term. This plan is not going to work.”

Penni Court of Dunnville attended the protest. She said that her 13-year-old son, who has multiple special needs including non-verbal autism, has been let down repeatedly by provincial governments: “He was assessed (at age 3) and we were told he needed IBI therapy. The government at the time disagreed, refused to fund it, and said send him to school. Fast forward to Wynne, us parents fought against stopping funding at age five. He (later) made the waitlist for OAP. Two months ago I got a call he was off the waitlist … Two weeks ago they called a halt to everything.”

“Twice now the government has taken away my son’s future. He was given a second chance for some quality of life and independence, but now that has slipped away again,” continued Court, noting that she has been quoted at $75,000/year for the therapies he needs. “You have that mom guilt. I think to myself had he been given what he needed back then, he may not even need it now. It feels like a betrayal.”

Amy Englert, also of Dunnville, is a single mom of four, two of whom have autism. Her eldest, Sam, has been undergoing IBI for two years with great strides. However, she expects the new funding would only cover about a month and half of his therapy. Her youngest, Eli, needs speech and occupational therapy, which isn’t covered under the new family budget at all. Unable to work because of the care requirements of her children, Englert said hearing about the new changes was “terrifying. I don’t know what to do, so I just keep fighting, going to protests. If we have to protest for four years we will.”

Couple holds sign protesting autism funding
SIMCOE—Shown is Maria Barredo of Fisherville and her husband Joe Legault. They fear their son Guy, 7, will lose all the progress he has made in therapy because of the new changes. The couple already spends $260/week on speech therapy, which will still not be covered. See Barredo’s letter to Toby Barrett on Page 5.
—Haldimand Press photo by Kaitlyn Clark.

Maria Barredo of Fisherville attended the protest because of her son, Guy, age seven. She believes the funding should be needs based, instead of age based, and expanded to cover more hours: “He is starting to make some gains to function in school, but he’s going to lose that. He is in mainstream (school), so his behaviour doesn’t just affect him because he can be very disruptive.” See Barredo’s letter to Barrett on Page 5.

Katie Kocmarek, sister of organizer Leah, added, “This impacts everyone. Children are getting their services cut and they are coming to a school near you.”

With many parents intending to lean on local schools in educating their children, The Press reached out to the Grand Erie District School Board about the changes. When asked if the board feels there is enough time to prepare for the changes, Liana Thompson, Superintendent of Education, said, “No. The potential increase of students attending school with reduced skill sets (no longer having the funding to access the intensity of therapy required) means we will need to re-assess our current resources and adjust, as necessary, to meet the needs of these students.”

“Any funding decreases for students with special education needs negatively impacts students,” continued Thompson. She noted that Grand Erie has a variety of supports for students with autism: “Schools will assess the needs of each child and respond with available resources to ensure that program and safety needs are met to the best of their ability.”

Currently, Haldimand Norfolk REACH provides OAP services. Leo Massi, Executive Director, said, “The situation is still in transition and we are awaiting further details from the Ministry of Children, Community, and Social Services before we can determine the specific role that we will be playing in the new OAP.”

Massi said that services not under OAP, such as respite services, will not be affected. “Then we have the services under the OAP, such as behaviour services, that will be affected by this change … We have a lot of questions ourselves that we hope to have answered in the next few weeks. Our focus is on the families … and on the employees who are worried about these changes and helping them through this period. This is a significant transition, which can be difficult.”

Currently, speech and language services are provided through the local Health Unit, but only for preschool ages. After this, and along with occupational and physiotherapy, children are sent to Lansdowne Children’s Centre in Brantford.

When asked about the new program, Barrett said, “We got an extra $100 million in emergency funding (for OAP) because it was a bankrupt program … We doubled the money to diagnostics to get people diagnosed much more quickly.”

He added that funding to help autistic children can come from other areas as well, such as the millions of dollars that supports special education in schools. He also hailed the new program’s flexibility for families to “custom tailor” their funding, including towards travel and technology. When asked about the funding not applying to items such as speech therapy, he said he was awaiting the program’s implementation on April 1 to see an exact list of eligible resources and therapies.

“The principle behind this program is for the families to have control of where the money goes,” said Barrett. “I’m so impressed with these parents I talk to. They’re fighting for their children, and I fight for them. That’s my role.”

The Press reached out to the Ministry of Children, Community, and Social Services to ask how the funding amounts were determined; why they are using an age/income-based model; why items such as speech therapy are not included; how regional service providers would be affected; and if the government is revisiting the issue at all considering the recent protests, which was set to include a protest at Parliament Hill on March 7. The ministry confirmed the information explained above on eligibility and funding in the new program and added:

“Ontario is committed to helping families receive critical supports and services faster and not having children and youth wait for years before getting help … Evidence shows that when children start behavioural intervention between ages two and five, they gain improvements in cognitive and language development, are better prepared for school and have better long-term outcomes in adulthood … Our goal is for every child to be able to receive support close to home. We recognize that this will be a significant change to how current providers will run their organizations. We are committed to working with them throughout the transition.”

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