KAWARTHA LAKES – There are approximately 45,000 children registered and waiting to enter into the Ontario Autism Program.
But even though the program was intended to become available in April of 2020, thousands of families are still lingering on dreaded waitlists, hopeful that more services, support and resources will come available.
For Ashley Ferreira, starting a new Facebook group, 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.
“They always say when you get that diagnosis you will receive the services and the help you need but I was shocked and discouraged by the system that OAP had in place,” she explained. “It is in limbo, nothing is happening and that’s all you get, it’s in progress, the PC government promised to be transparent but we are just getting small details from the ministry.”
Ferreira’s son, Owen, was diagnosed with Autism Spectrum Disorder, ASD, in August 2020. He is now five years old but Ferreira suspected this outcome when her son was two.
“Between him and other kids his age, his speech was way below theirs and he wasn’t hitting milestones,” she said. “We started with speech therapy around age three and saw a developmental paediatrician which wasn’t a great experience.”
After two years of seeing various specialists and attending many appointments, the family finally got the diagnosis but it hasn’t been easy and support has been hard to come by, Ferreira said.
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.
The Ministry of Children, Community and Social Services, MCCSS also established an OAP Advisory Panel which was tasked to review and analyze the results with other relevant evidence, science and data, to provide input and advice for a new, needs- based OAP.
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.
But like so many other families, Ferreira is still holding her spot on the waitlist.
And while the Ministry says the new program is being implemented, MCCSS provided families on the waitlist with interim one-time funding.
Families received $20,000 for children under the age of six and $5,000 for children six years old and over.
According to MCCSS, families can use the funding to purchase a range of services and supports for their child, including evidence-based behavioural services, speech-language therapy, physiotherapy, occupational therapy, respite services, technology, and travel.
Ferreira received 20,000 dollars for her son but it continues to sit in her bank account, untouched as she continues to struggle in finding support. She also noted that the pandemic has also caused longer wait lists with more support offered virtually.
“While the program has been in limbo, therapists in the area are lacking now and the wait list has grown,” she said. “We are on a few wait lists waiting to for a spot to open and while some places could do virtual, unfortunately that is not an option for Owen.”
Ferreira often wonders if the financial support was intended to be used as “hush” money while the OAP prolongs their reconstruction.
“The program has been in limbo for so long that therapists are disappearing, there is no money, it’s a catch 22,” she said. “Right now they’re overwhelmed, the program was froze in 2018 and since 2018, until the recent one time funding was handed out, the waitlist is just growing and growing.”
According to MCCSS, all children and youth up to 18, with a written diagnosis ASD, from a qualified professional will be eligible to register for the new OAP.
MCCSS has stated that families will have access to the following services and program supports in the new program:
- Core clinical services that include Applied Behaviour Analysis, speech and language pathology, occupational therapy and mental health services;
- Foundational family services for all families in the program, to build their capacity to support their child’s learning and development;
- Caregiver-mediated early years programs and entry to school supports to help young children access critical services when they will benefit most, and to prepare them to enter school;
- Urgent response services to support children and youth who are in service, or are waiting for service, and have significant and immediate needs; and
- Care Coordinators to support families throughout their journey by providing orientation to the program, service planning and navigation, and help with managing transitions.
And while those services may excite many families in need, Ferreira is sceptical that the Government will unveil a truly, needs-based program.
“As a parent and an advocate, my top priority is needs based therapy, which is making sure that a program isn’t a benchmark program,” she said. “I’m worried my child is going to be assessed by a benchmark system, that if he doesn’t fall in the middle, he will be bumped from services, the government wants to get through the waitlist fast and spend less money.”
According to a recent MCCSS report, OAP Care Coordinators will be the main point of contact for families in the OAP and will be available to answer questions and provide support for families. The MCCSS also stated that the primary responsibility of the Care Coordinators will be to “conduct the determination of needs process for every child accessing core clinical services.”
The level of involvement a Care Coordinator has with each family will vary, depending on the family’s unique needs and the other services and supports they have in place, the report said.
The report also stated that the following would be the primary roles and responsibilities of Care Coordinators:
Lead Determination of Needs Process:
- Coordinate consent to access or support the parent/caregiver to provide a copy of assessment results and reports from previous service involvement (where appropriate) to build the child’s profile;
- Using a standardized, clinically-informed process, gather required information about the child and family to determine the child’s level of support need and applicable funding amount for core clinical services;
Support Informed Decision Making:
- Provide information to support families to understand clinical services eligible through the OAP in order to make informed decisions about their child’s treatment;
- Support families to locate local service providers, and refer families to the OAP Provider List to support their provider selection, as required;
“A Care Coordinator will assess the child and forecast the child’s needs and then we are to work with a clinician but this is backwards of how it should be,” said Ferreira. “A clinician should assess the child, then a Care Coordinator should navigate us through, I don’t want someone that isn’t a clinician assessing my child, he will fall through the cracks.”
MCCSS states that once a child or youth’s profile of support needs is determined by the OAP Care Coordinator, families will receive a corresponding OAP funding allocation that can be used to purchase eligible core clinical services.
According to the report, the new program is to commence in the spring, but as parents and caregivers continue to wait, the report states that “there are several different ways that families are supported with navigation, orientation and information, including, Service Ontario, Regional Offices, OAP Family Support Workers; and Autism Ontario’s Service Navigation Program.
Service Ontario offers a 1-800 line for families to call with questions about the OAP.
MCCSS also states that they are currently providing funding to Autism Ontario to deliver the OAP Service Navigation Program, offering families across the province workshops, training sessions, and individual support.
Autism Ontario may help families with understanding what types of services are available to purchase with a childhood budget or interim one-time funding, getting help with OAP application forms, eligible and ineligible services and submitting expenses, finding qualified providers, finding local services and supports in their community, accessing parent resources and webinars and connecting with other families through mentoring and social learning.
“We want a truly needs-based program implemented, that a child is assessed individually on their needs, not lumped into a number or a category and given the support and the services they need, for each individual child,” said Ferreira. “Our fear is that they’re going to roll out a program that isn’t truly needs-based and its scary, we know autism isn’t a one size fits all.”
According to the Autism Ontario Website, “Autism Ontario is playing a key role in offering orientation and system navigation supports to families who are accessing or interested in accessing the new OAP. Autism Ontario will offer direct supports to families through the OAP Service Navigation Program.”
For more information and for support through Autism Ontario, visit autismontario.com.