Skip to content

Letter: Community not consulted on changes to B.C. autism funding

A parent speaks out
autism
iStock photo

Editor:

An open letter to Education Minister Jennifer Whiteside:

As your constituent and parent of an autistic child, I am writing to express my extreme opposition to the recently announced elimination of individualized funding for families who have children diagnosed with autism spectrum disorder, as announced by Mitzi Dean, Minister of Children and Family Development. I would also like to express my disappointment with Minister Dean regarding her lack of consultation with the autistic community and her lack of consultation with all families of need, professionals in the field, supporting organizations, and service providers. Although Minister Dean stated that 1500 families were consulted, we know that these families were not aware of Minister Dean’s agenda, making her argument moot.

The Ontario government, which has put a very similar approach to what Minister Dean has announced into place, has gained much criticism from parents in Ontario and their politicians:

[Ontario] NDP Leader Andrea Horwath said the growing waitlist shows the government is failing families with autistic children. “Over 27,600 children with autism in our province are not getting the needs-based services that they need and that they deserve,” she said. “It is just tragic and it is absolutely horrific that this government has done such a bad job.”

I am curious about what articles we may be reading in the next couple of years regarding BC’s plan to implement a similar program.

Closer to home, I am not inspired with confidence when looking at current BC government-run or associated facilities or clinics such as Child and Youth Mental Health or the BC Autism Assessment Network (BCAAN). In talks with psychologists directly involved with Child and Youth Mental Health, CYMH is currently operating under a triage system whereby only the most severe children, by which I mean children who pose a risk to self-harm or completing suicide, are treated. As any parent attempting to seek an autism assessment can attest, Sunny Hill has a waitlist of 18 months to 2+ years. Minister Dean herself has confirmed this and was quoted saying, “We’re not locking services behind two years of waiting for a diagnosis,” referring to BCAAN, where families must go through to get their autism assessment diagnosis subsidized by the BC government. She has admitted that her government is incapable of delivering services promptly and does not bode confidence in increasing government involvement in providing aid to our children in need. I am convinced that combining treatment programs to include all children of need under one roof will lead to longer wait times, further denial of services, and services that are not right for our children. The ending of individualized funding and forcing children to wait in a queue to access services will create a system where instead of helping, the BC government will end up forming a two-tiered system. There will be those who can afford private services and skip the queue and those who cannot, as has been demonstrated by Child and Youth Mental Health and BCAAN. The poor will continue to suffer.

I am worried about the funding currently provided to school districts for children with autism. As the Minister of Education, can you ensure that the elimination of AFU funding will not affect money to schools or at-home programs in supporting our children with additional needs?

My son has had the aid he required solely because we received individualized funding. We had to filter through multiple service providers and aid workers until we found the custom approach and people to help him. He went from a non-verbal child with difficulties socializing with peers and extreme anxiety to one who has just started kindergarten, loves school and speaks articulately. These improvements could not have occurred without our being able to choose what services were needed. Talk about a needs-based system! We parents are the experts of our children. We know our children’s needs better than the BC government does. To remove us from the decision-making process of how our children receive care and to force us to defer to the “experts” is not family-centred and is frankly insulting.

I strongly encourage you to remind Minister Mitzi Dean, Deputy Premier Mike Farnworth, and, when he is again well, Premier John Horgan, that we as parents do not respond well to cookie-cutter approaches to our children’s care. I ask you to urge Minister Dean to rescind the removal of individualized AFU funding and make utilizing family connection hubs optional indefinitely.

I would also strongly encourage Minister Mitzi Dean to investigate the measures the autistic community took to secure individualized funding in the first place. We will use every legal and political action at our disposal to ensure we do not lose it.

On a personal note, I found the improper and out-of-touch terminology Minister Dean continues to use troubling. Every person on this planet is neurodiverse. We, Ministers, are neurodivergent. Language is important.

I look forward to your response.

Dwayne (Marty) Fontaine, New Westminster