Don't change autism model

Open letter to (B.C. NDP leadership candidate) David Eby, (B.C. Children and Family Development Minister) Mitzi Dean, and (B.C. Health Minister) Adrian Dix and all other B.C. politicians

As a mother of two autistic teens, I am writing out of great dismay over the transition to a hub model next year.

There is not a single news article that provides a positive reaction to this move, and it will be significantly problematic if you decide to continue implementing the hub model over the current, and highly successful, individualized funding model, which has proven to be both effective and inexpensive.

My teens could not function in a traditional school setting and had to be looked after at home. Like many parents with high-needs children, the strain of providing support to two high-needs kids significantly affected my marriage, which ended in divorce.

Thanks to autism funding, a behavioural interventionist now comes into my home daily to help my kids with daily life skills and my kids are able to engage in activities in the community. The autism funding only covers a portion of costs, but without it, I could not afford to carry on.

Because of this behavioural interventionist, and other complementary local therapies, my kids have hope for a future. Coaching doesn’t happen effectively in an office or centralized hub setting, it happens in the moment in daily life where the child or teen lives. Services need to be in the local community, in the moment, without long waitlists and other barriers.

According to studies, the average lifespan of autistic individuals ranges from 36 to 54 years. If they survive childhood, people with autism are still four times more likely than the average population to die of suicide. Autistic persons have a right to life and by withdrawing supports the government is denying their right to life and right to adequate medical care.

Paying a hub psychologist or other specialists as little as $37 per hour will result in severely under-qualified staffing and major staffing shortages. The experts who have been dealing with these autistic kids for years, and who understand the deep nuances of these children (and “invisible disabilities“), will have no incentive to foresake their private practice to take massive pay cuts.

Our entire province already has severe shortages in these fields and long wait lists for specialized services. No one who knows what they are doing, and is good at it, will willingly move to such a disastrous model. All it will do is cut off thousands of children from services that have been proven to work.

The current cost of interventions for my teens ranges from $15,000 to $17,000 per child per year, much of which I have personally funded to date as a single mother. To afford this, I sold my condo, moved in with my parents, avoided owning any form of transportation and have lived a very modest life. Even then, it is hard.

Supporting the hub model is political suicide, and I believe it will eventually cost the B.C. NDP significant support.

Ontario recently admitted it only met 11% of its original target for treating children with autism and related needs. Instead of meeting its target of 8,000 children to be treated by last fall (2021), a year later it had only treated a grand total of 888 children (by summer 2022). Imagine the extreme cost, and only 888 children treated? It will be the same here. A complete failure with major expenses.

Additionally, the government of Alberta quoted its average health system funding costs of $57,000 per child with autism, making the $6,000 to $22,000 paid out for private, parent-selected individualized care here in B.C. a far cheaper and more effective alternative.

When you factor in the overhead costs of new HUB office real estate and contracts, bureaucracy, administration and other overhead, it will be the most expensive option by far.

Please make the right decision and restore the original funding model. Hubs will only hurt everyone.

Zarah Penner

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