Autism plan is one step on a long road
Let’s hope desperately needed resources will follow, Katharine Cukier says.
Thousands of families like mine struggle with the uneven quality and accessibility of publicly funded services for our autistic children. I welcome the action plan on autism spectrum disorder 2017-2022 that the Quebec government announced last week.
But, despite the new provincial budget’s promises of funds for health and education, I wonder what relief the autism plan will actually bring. The plan is a significant commitment to addressing many of the things we have experienced. For our son, there was an 18-month wait for diagnosis, followed by an 18-month wait for services; uneven expertise in those services; insufficient possibilities for respite; lack of co-ordination between service providers in the health and education sectors; and inevitably, emotional and financial stress on the family. These realities are acknowledged in the plan.
I am delighted to see it address the question hanging over all parents: What happens when our autistic child turns 21? There is a commitment to provide timely, appropriate services for ASD adults. Currently, 21-year-olds with challenging ASD are basically supposed to wait unsupervised in their parents’ living rooms for a couple of years for inadequate services to be proposed.
But the truth is that the bar for services has been so low for so long, and we have lost even more ground in the last few years of the Liberals’ austerity, that it’s kind of pathetic how the mere sight of these priorities in print makes my heart quicken with optimism. For my son’s sake, I must expect more than words on paper.
Other than the commitment to reduce by half the wait list for intensive therapies for preschool age, concrete proposals are not easy to identify. The autism plan includes much talk of
Exactly how many trained people and professionals will the government hire in the next five years to work with autistic people?
“establishing guidelines,” “targeting objectives,” and “co-ordinating stake-holders.” I worry that millions will be spent on bureaucracy.
Our son is at a wonderful school for autism that experienced damaging staffing cuts because of government-imposed funding restrictions. I see no new funds earmarked for them, and fear these vulnerable kids will not get what they need.
And because of cuts in the health system, over the past two years we have lost an experienced psychiatrist and a home educator from the rehab centre for our son. In February, when our son was in crisis and had to be hospitalized, there were half as many beds for autistic children as there were two years ago.
When he was discharged, the rehab centre promised thrice-weekly visits to support us with our son’s aggression: In this past month, they have visited once. They have too few staff. I have scrapes and bite marks all over my arms.
So, forgive me if I think this autism plan is part smoke screen. I have one key question that neither the budget nor the autism plan answers explicitly:
Exactly how many trained people and professionals will the government hire in the next five years to work with autistic people? That is what the $29 million a year earmarked for autism must be spent on.
Without more qualified staff to help autistic people in the daycares, schools, rehab centres, in the family home and in the group homes, respite services, job training placements and even hospital wards, progress will be minimal.
The budget does allocate money for hiring more staff in elementary schools, but I am doubtful that there will be much left over for autistic students: There is so much catch up for all our children in the public schools. The $11 million targeted by the autism plan for early childhood (0-5) will be a lost investment if not followed by properly financed primary and secondary education services, including occupational therapists.
I applaud all the advocates who worked so hard to get the government to commit to our autistic children and families. It’s a step in the right direction, but there is still a long road ahead.