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HomeNewsGovernment Promises To Begin Working With 600 Autistic Kids While Over 40,000...

Government Promises To Begin Working With 600 Autistic Kids While Over 40,000 Sit On Waitlists

KAWARTHA LAKES – While approximately 40,000 children continue to sit on waiting lists to enter into the remodelled Ontario Autism Program, the Ontario government recently announced that they will soon be inviting 600 of them to participate in the launch of core clinical services.

But what about the other thousands of families waiting in line?

The program was intended to become available in April of 2020, and like so many other parents, Ashley Ferreira remains disappointed with the announcement.

“It’s a mixed bag of emotions, that’s for sure, there’s good and there is still a lot of red flags,” she said.  “On the 600 kids, I can say that it’s a good thing, we have to start somewhere so it’s a beginning, with the 600 we know it’s a pilot, it’s scary to think when Minister Smith says that they’re going to do this slowly and make sure they get it right, how slowly are we talking, 600 kids out of 40,000 and over, so it’s shocking when we hear things like that, it’s gut-wrenching.”

For Ferreira, starting a new Facebook group months ago, Kawartha Lakes Autism Advocates, came after her concerns grew for the new Ontario Autism Program, OAP, and the lack of support that the government is offering while the OAP is being remodelled.

But this new announcement continues to leave her feeling anxious and unsure of the future for her son Owen. Owen was diagnosed with Autism Spectrum Disorder, ASD, in August 2020. He is now five years old.

In their most recent statement, The Ontario government claims that they will be providing additional supports for families of children on the autism spectrum. Starting in March, the province will begin offering core clinical services based on a child’s individual needs, a key element of the new Ontario Autism Program. These services include applied behaviour analysis, speech-language pathology, occupational therapy and mental health supports.

The statement continued, recognizing the challenges and uncertainty families are facing as a result of COVID-19, the government will be offering an additional extension of funding to purchase eligible services and supports parents feel are most appropriate for their children as the province continues to implement a needs-based autism program. Further details about eligibility and how to apply for the extension of funding will be shared in the coming weeks.

“Providing core clinical services is a critical step forward in the development of a needs-based autism program designed by the community for the community,” said Todd Smith, Minister of Children, Community and Social Services. “We are determined to get this right so more children than ever before can receive the appropriate level of support they need close to home.”

In 2019, the Ontario government set out to change the autism support program. Officials engaged in a province-wide public consultation with an online survey, telephone town halls and written submissions from families, professionals and experts in the community, seeking input and advice on how they can better support the needs of children and youth with ASD and their families.

In December 2019, the government announced key elements of the new needs-based OAP. Implementation of the first phase of the new needs-based program began in early 2020, with additional phases set to role out throughout 2021.

And while the Ministry says the new program is being implemented, families on the waitlist received interim “one-time” funding. Families received 20,000 dollars for children under the age of six and 5,000 dollars for children six years old and over.

But the one-time funding has turned into “two-time” funding as the government continues to prolong the remodelling of the program.

The government states that families will benefit from:

  • Renewal of interim funding: Eligible families who received a childhood budget or interim one-time funding will be offered additional payments of either $5,000 or $20,000, based on their child’s age, to purchase eligible services and supports they feel are most appropriate for their child.
  • Urgent response services: Initiating a community-based proposal process to identify organizations in the sector to deliver urgent response services. These services will provide a timely, rapid response to a specific, identified need to prevent further escalation.
  • A $3.8 million additional investment in diagnostic hubs to improve families’ access to an assessment for their child by reducing waitlists and wait times, resulting in families being able to register for the Ontario Autism Program and access services as quickly as possible.
  • Increased oversight of clinicians providing applied behaviour analysis (ABA) therapy in Ontario. The government will introduce legislation to regulate ABA as a new profession under the College of Psychologists of Ontario, beginning with applied behaviour analysts in supervisory and assessment-focused roles.

Ferreira received the initial 20,000 dollars for her son. The funds remained untouched in her bank account for a long period of time as her family found many limitations in finding resources available.

“I think MPP Smith was irresponsible to announce the additional funding without including further details,” said Ferreira. “This two- time funding leaves me with a mixed bag of emotions and anxiety as I can’t plan until Smith actually comes out with the details. He left me with a lot of anxiety and not knowing how I can plan. Are we waiting for weeks or are we waiting months?”

And while Ferreira continues to wait on the OAP waitlist, she was recently removed from therapy centre waitlist and her son has now been receiving play-based therapy for the last three weeks.

“He has been in play-based ABA (Applied Behavioral Analysis) for three weeks and the 20,000 dollars will cover about 44 weeks,” she explained. “We also have him in private programs, out of pocket, which we have done for years.”

According to the Ontario Autism Coalition, OAC, this recent announcement is simply unacceptable.

“Once again, the Minister of Children, Community and Social Services, Todd Smith, has said that most children with autism in Ontario will have to keep waiting for the core services they so urgently need. Initially, he promised that the program would be ready by April 2020,” they said in a statement. “Today, 462 days after the release of the Autism Advisory Panel Report, the Minister has finally gotten around to announcing a pilot project for roughly 1.5 per cent of the over 40,000 children registered in the Ontario Autism Program.”

In the government statement, Smith championed the 600-child pilot project as a way for the government to start slow, in order to give the government time to get things right.

But the OAC states that this government has had nothing but time to get this program right.

“The truth is that they have done nothing but stall and delay as families have been waiting in desperation for the core services their children need now,” they said.

According to the OAC, these additional funds will not make up for the prolonged wait. Families have been telling the government consistently that the interim funding model does not allow families to access meaningful support for their children.

“Once again, Todd Smith has simply extended the program that the autism community has been protesting since it was first introduced by Lisa MacLeod when the Conservatives destroyed the autism program in February 2019. This is not good enough,” said the OAC.

The ministry has asked the Child and Parent Resource Institute to oversee the launch of core clinical services. Beginning this month, care coordinators will be trained to conduct and guide families through the new determination of needs process that will include:

  • meeting with a family to identify a child’s goals, strengths and support needs across key domains
  • allocating funding to families so they can purchase core clinical services from providers of their choice
  • supporting families with next steps to access core clinical services of their choice

But as Care Coordinators are tasked with determining the needs of each individual child, for Ferreira this will always be a red flag, blowing in the wind for everyone to see.

“I have big concerns about care coordinators still, they made it clear they are going to allocate the funds, so they’re going to allocate and determine needs by using a standardized tool,” she said. “With this standardized tool, it sounds like a benchmark, a computer program that’s going to be an algorithm, this can’t happen. We cannot assess our children with an algorithm to allocate funds, each child is so different.”

And even though Ferreira feels like the Ontario government has let her and so many families down, she has seen progress and improvements in Owen since he started therapy only three weeks ago.

“We are incredibly proud of the extensive work that has gone into developing these key elements of our needs-based and family-centred Ontario Autism Program, which we will continue to evaluate on an ongoing basis,” said Minister Smith. “It’s important that we are responsive to the individual needs of children and youth and that their families are supported every step of the way.”

For Kristen Locklin, her son Noah was accepted into services prior to program changes in 2019. As a result, he has been able to remain in the program and has been grandfathered into the old OAP.

And after receiving therapy for just over two years, the Locklin family household has been transformed.

Noah
Courtesy- Kristen Locklin

“We have had a transformation of our entire family’s life, we went from having a non-verbal, aggressive, angry, mostly unhappy, isolated child to having completely the opposite,” she said excitedly. “He talks, he sings, he can speak in three-to-four-word sentences, he plays, and he interactively plays with his brother now.”

But after hearing the new announcement from Minister Smith, Locklin feels saddened.

“It’s devastating, I’m here as an advocate because everyone needs this help, I know there are financial restrictions and we can’t get therapy for 20 years, but everyone deserves a chance to succeed and a chance to learn,” she said.

Before Noah entered into the services that were previously offered through the OAP, he lived off of four unhealthy foods only, he wasn’t potty trained, he would self-harm and lived in stress and unrest.

But after such immense success and improvement, Locklin has high hopes that the government will take action and properly take care of these families as quickly as possible.

“It’s all because of the therapy, no matter what I did with my knowledge, I couldn’t get him to learn the skills,” she said. “Our life has completely changed it really has, I was changing bums 30 times a day and dealing with an unruly child who couldn’t communicate at all, intensive behavioural therapy is what gave him the tools and taught us how to work with him.”

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Jennifer Walker
Jennifer Walker
Jennifer decided to study journalism after having a life long passion for writing. She began her career as a reporter for the Uxbridge Times Journal and moved on to freelance work for various publications after her and her husband welcomed their daughters. She has been published in various Durham Region newspapers, the Durham Parent Magazine as well as Equine Wellness. Jennifer continues to follow her dreams as a wife, mother and journalist and is so excited to join the team at Kawartha411.

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