The Ontario Public Service Employees Union (OPSEU) is pleased to submit its report to the advisory panel on autism services in Ontario.
OPSEU represents thousands of frontline child treatment workers, some 800 of whom deliver services to individuals with autism. We are uniquely positioned to provide input to this consultation process, as we represent workers who provide training programs (community colleges) on the front lines of service delivery within the Ontario Autism Program and in educational settings, as well as workers in the adult developmental services system, in children’s mental health, in the community and in hospital settings.
We understand the intricacies and complexities associated with providing autism services. Changing one part of the system can have profound ripple effects. Our members provide high-quality, evidence-based autism services and have a proven track record of ensuring countless children and youth have had accountable and effective services over many years. Our members’ wealth of knowledge and experience, along with that of the families we meet with, dominate this submission.
The Ford government’s recently imposed changes to the Ontario Autism Program, if not reconsidered and revised in light of this consultation period, will have devastating long-term effects on children and their families, while rewarding private, for-profit businesses with public dollars.
Those requiring the most intensive level of care and treatment will be the most affected by the proposed flawed funding model, which does not consider the level of assessed need. Without adequate funding, parents will be forced to send their children into the education system prematurely and unprepared – a system that has already indicated it does not have the resources, whether funding or trained staff, to adequately meet these children’s treatment needs.
OPSEU strongly recommends that you reinvest in, and commit to, the direct-service program option. It’s a cost-effective solution for both families and the government. Direct-service organizations provide their clients/patients with evidence and need-based treatment. Their frontline workers are supervised by Behaviour Analyst Certification Board (BCBA) certified staff and are accountable through supervision and a multi-disciplinary approach to service. They are able to provide client-centred treatment in the designated health centre, but also in the child’s home and school, which is what many children need. Direct-service organizations design treatment plans based on a child’s assessed need, which means that only necessary services and therapy are recommended. That is good for the families, good for society and good for the government.
In addition to the recommendation that the direct-service option remain the most fiscally responsible and accountable approach to providing autism services, OPSEU makes the following five recommendations.
1. Treat autism like any other health issue: Fund the treatment.
Autism should be treated like any other health issue. In Ontario, if you are assessed as needing a heart transplant, you get a heart transplant. Autism services should be no different: If a child is diagnosed by a qualified professional, you should get the level of treatment intervention to address the level of assessed needs. They should be effective, efficient and holistic. They should be publicly provided through a direct-service organization – a public delivery system has proven to provide better outcomes for children and saves the government money.
Early intervention and investment in appropriate autism treatment will result in reduced spending on our health care, social services and corrections systems in both the short and long term. Children with autism who don’t receive the services they need often require much more expensive supports as adults. They spend more time in hospitals and mental health facilities. They depend more on social services. In the worst-case scenarios, they end up in our jails. These services are far more costly than providing autism services to children.
There is no doubt that the public, direct-service option delivers the most value for money, both for families with children, not to mention the provincial government.
2. Parents want choice but also timely access to treatment, stability and help they can count on.
Having a voice in their child’s care and choice is important for the parents of children with autism. Some parents want the ability to choose the frontline workers and services their child needs, and choose to use a direct-funding option in purchasing services for their children. But for many parents, through lived experience in trying to implement this option, the task of finding services and acting as an employer are found to be simply overwhelming. The direct-funding model is unattainable, in particular, for those families living in the north and some rural communities, as often there are, quite simply, no workers in these areas.
What families want and need is an accessible and timely, direct‑service option that can provide all the required resources centred in one place with the flexibility to accommodate unique situations, such as location.
3. Ensure there is a dedicated and skilled workforce available to families.
Children and families coping with an autism diagnosis deserve high-quality treatment, which means having a trained workforce. The current educational requirements to implement a treatment plan are achieved through programs offered through a number of community colleges across the province. However, we are concerned that the changes to the funding model, as it currently stands, will contribute to a loss of these specialized educational programs and will affect the availability of a qualified workforce.
For example, Lambton College has suspended its Autism and Behavioural Science Program because of low enrolment, despite the demand for trained workers in this specialized area of work, as evidenced by current waitlists for treatment. Even in the direct-service-funded programs, there are recruitment and retention challenges.
Working with people with autism can be mentally, physically and emotionally demanding work. OPSEU is concerned that this trend to suspend or eliminate these programs may spread to other community colleges. Now is the time to investigate what may be contributing to declining enrolment in this specialized area of work. If the direct-funding model is fully implemented, families may have dollars to purchase services – but limited services available to purchase.
If we cannot train, attract and retain skilled workers through our current educational model, families will be vulnerable to hiring untrained and/or unqualified people placing our children and families in precarious situations as often these providers survive on billable treatment hours.
Currently, development of a treatment plan for a child with an autism diagnosis requires a minimum BCBA qualification. This is a master’s level requirement. Private providers are less likely to hire BCBA staff to ensure proper oversight of an effective, evidence-based program.
Further, as with many college and university programs, supervised placements are a requirement for graduation. The current education model requires completion of supervised block placement hours for both the BCBA and the autism and behavioural science programs as part of qualifying for their professional designations. With the elimination of direct-service providers, OPSEU anticipates this will further compromise the ability to provide high-quality services, due to the challenge students will face in completing this requirement for graduation on account of limited placement opportunities.
Finally, BCBAs are governed by their own college, which has ethical standards around caseloads for these professional designations. Due to a lack of certified BCBAs available within the private system (noting that there is also a lack of regulatory oversight), there is the risk that clinical standards and ethics in regard to manageable caseloads and clinical responsibility will be compromised.
4. Create a governing body to certify professional autism service workers will provide a further measure of accountability.
The Ministry of Child, Community and Social Services should work with the Ministry of Training, Colleges and Universities to certify autism service workers through development of a registry system.
We support the idea of funding regional diagnostic hubs to ensure that assessments leading to a diagnosis are performed by those qualified to complete these specialized assessments – and that these hubs be direct-service organizations. We further recommend that these hubs should be tasked with developing service/treatment plans and provide oversight/supervision in implementing such plans, whether provided by the regional hub, a direct-service-operated agency IBI/ABA therapist or by an IBI/ABA registered therapist.
5. Impose a moratorium on layoffs in the sector while consultations are taking place and create a realistic transition timeline, should any further changes be implemented.
Until the consultation process and subsequent analysis of the data are completed, OPSEU strongly urges the government to extend the current transition timeline for those currently receiving direct service and those on the waitlist for the direct-service option. This would include putting a moratorium on laying off further direct-service staff. We also call for funds to be provided so agencies can recall those workers who were laid off in light of the previously announced cuts.
. Funding to current direct-service-operated agencies should be extended during this defined period.
Another option of clearing the waitlist would be to fund and offer the direct-service option to all who have elected to be on the DSO waitlist, rather than contribute to further uncertainty as to where and when services will be available.
We continue to support a model of care that is equitable and universal. We believe the direct-service model meets both of these values and will ensure accountability and the best use of tax dollars.
In light of the tremendous need for direct-service providers – and faced with a backlash from Ontario families angry and concerned about their children’s future – it would be folly for the government to lay off any autism workers while consultations are ongoing. Until a viable way forward is identified that will meet the needs of all individuals with autism, autism professionals must be retained and replaced, as attrition dictates. In fact, as stated in our third recommendation, more direct-service autism professionals need to be hired.
Conclusion
Families of children with autism deserve fair access to treatment, no matter where they live or how much money they make. The government has a formidable task ahead of it. No decisions should be made without extensive study and consultation with frontline autism services providers, families and other stakeholders.
OPSEU has decades of experience representing people who provide services to children with autism, as well as educators of autism service workers and people who work with people living with autism in our hospitals and public institutions. We urge you to consider these recommendations very seriously as you implement a plan that will do justice for families of people living with autism. Let’s put people before profits.