Well, Happy New Year, everyone! I’ve been away for quite awhile, because work has been very busy and I’ve been trying to get some other projects finished in January…and it’s been tough to be away, because there has been so much that’s need commenting on, including:

• The disabled Indigenous women in the Hacienda facility in Arizona who gave birth after being raped being a nurse without any staff realizing she was pregnant
• New York State’s controversial new abortion legislation
• Trump’s shutdown
• Politicians suddenly realizing that blackface isn’t okay.
• The state of affairs as we go full-steam ahead into the campaign for US Election 2020.

I’ll probably talk about all of those things at some point. But today I want to talk about something that’s happening in Ontario, the Canadian province in which I live. Conservative Member of Provincial Parliament Amy Fee has made changes to how funding for services for Autistic Children are allocated to Ontario families, and parents are outraged.

Image Description: “Autism” in uppercase letters, various colors, against a black background.

Content Note: ABA, ableism, applied behaviour analysis, cutbacks,  Doug Ford,
acceptance vs cure, wait lists

Too Long a Wait

Amy Fee is the Member of Provincial Parliament for the riding of Kitchener South-Hespeler and Parliamentary Assistant to Lisa McCleod (Minister Children, Family and Youth Services.)

(Doug Ford, the current Premier and a former City Councillor for Toronto, once called a group home for autistic youth in his ward a “nightmare for the neighbourhood,” but I digress.)

Amy Fee plans to eliminate the current wait list of 31 weeks on average for treatment therapies like Assisted Behaviour Adaptation, currently standing at 23,000.

Before we get into this, let’s establish for newer readers that when it comes to autistic children, I’m much more for “acceptance” than I am for “cure”, and have trouble getting behind ABA programs. But I’m not a parent at all, let alone a parent of an autistic child – I’ve worked with autistic children, but I got to go home at the end of the day. I’ve also worked in Ontario’s developmental services sector, and the constant erosion of governmental supports for disabled individuals and their families as a general trend irritates me to no end. Whatever your feelings on autism treatment therapies, this is an important story to talk about.

What Amy Fee Plans to Do

I’ve been out of the field for a while and I didn’t know until I started researching this story that the wait lists for services for autistic children in particular had gotten so high, and then decreased a little bit under the Kathleen Wynne’s Liberals when they brought in a sort of personalized funding option that allowed for some flexibility for families in how support funding was spent – but limited to ABA intervention and parent training, and getting a wait list of 28 000 children down to 23 000 while only 8400 children are in service isn’t good enough.

So now Doug Ford’s administration is taking a stab at addressing the wait list issue. The details of the Amy Fee plan, known as the new Ontario Autism Program, were announced in early February. The bones of the program are:

• Doubled funding – 5.5 million dollars over 2 years – for Ontario’s five autism diagnostic hubs, to diagnose the 2400 children on the list waiting for a publicly funded diagnosis.
• A move away from needs-based funding for select families managed by government agencies to direct funding for all families to spend on the supports that they want. Families with an autistic child under the age of 6 can receive up to $20 000 a year, and families with an autistic child over the age of 6 can receive up to $5000 a year. A child enrolled in the Ontario Autism Program for their whole childhood can receive a lifetime maximum of $140 000 in funding; a child enrolled at 6 years can receive a lifetime maximum of $55 000.
• Means-testing to determine a family’s funding level. Lower income families are more likely to receive funding. Families of autistic children whose families make more than $250 000 a year won’t receive funding.
• A broader definition of “supports” than under the Liberals, as long as the providers appear on a list of professionals approved by the Ontario government (to be released by April 1st.)
• More centralized application infrastructure. The nine regional service agencies to which families currently apply for publicly funded behaviour therapy (or the funding to purchase services from private services) will be replaced by one central intake agency.
• The one intake agency is ultimately in charge of how much of the allowed money to a family gets allocated to them. However, since allocation based on which families have the highest need is no longer an issue, there is no need for the behaviour assessment that is currently required – family income and child age determine the amount of money each a family gets, and the intake agency will help families work out a childhood budget that is used to make allocation decisions.
• Yearly reassessment.

I’m Not Going to Lie…

Some of this sounded okay as I was first reading through it.

It’s certainly positive to want to take action to decrease waiting lists for any sort of funding for supports. I remember the tyranny of waiting list from my time in the field, and of filling out applications for funding with parents knowing that they weren’t going to get it because the pot was frozen, making the argument that we should do it anyway to “demonstrate need in the area.” It’s a terrible thing to put people through, and the limbo of being on these wait lists is hellish for families badly in need of services.

It’s not (to my mind) a bad thing to make means-testing a part of the formula that determines whether or not families are eligible for funding to pay for very expensive testing and support.

But should it be one of the main determinants of whether people get it? This is a whole other question, and I think this is where the Amy Fee plan will blow up in the Conservatives’ collective faces – it’s not even in place and it’s already happening.

See, the thing is…

Image Description: Words made up of bright and varied colours on a white background: Fair isn’t everyone getting the same thing. Fair is everyone getting what they need in order to be successful.

Why Amy Fee’s Plan Won’t Work

It’s admirable that Ford’s administration wants all families with autistic children (or those that that make fewer than $250 000 a year, apparently) to have a piece of the funding pie, but there are several assumptions about autism and autism services at work here that, while they may make allocations to families look equal, they won’t be equitable:

• Early intervention is the only thing that makes a difference in terms of how autism manifests in a child, so funding any sort of intensive intervention after age 6 doesn’t make sense – Some children aren’t even diagnosed as autistic until age six or older, and will still benefit from interventions that $5000 a year makes impossible to access.
• Supports are affordable for the average family, even with just $5000 help and especially with $20 000 help – If funding is meant to cover “behavioural services such as assessments and consultations, family/caregiver capacity building and training, respite services, technology aids, and travel,” even $20 000 a year won’t go far – ABA can cost up to $80 000 a year – and $5000 certainly won’t. It seems inevitable that a two-tiered system will develop, where well-off families will use their our money to purchase services for their autistic children and autistic children from families who can’t afford to purchase them will go without.
• All autistic children have the same needs – Autism manifests in many, many different ways, and support needs between 2 autistic children could be drastically different. An autistic 6-year-old might not need even $5000 in supports, or might need significantly more than $20 000, depending on any number of factors. Allocating funds according to the belief that “one size fits all” support needs for autistic children, removing a needs-based aspect to allocating funds, means that some families may not get what they need while others may get much more – the developmental service sector system’s current method of allocating funding to those who need it most when they need it (as opposed to “everyone gets the same amount when they get there”) is there for a reason, just as it is in the Canadian health system. Unfair? It may seem so, yes – until you’re the one that needs help the most but you can only get $5000 to help your child in crisis as opposed to the $20 000 you got last year because they’re now seven years old. Funding should be allocated at least in part based on who needs it most to thrive, not on a desire to have everything look equal.

And stakeholders know this.

Reaction to Amy Fee’s Plan

The Ontario Autism Program goes into effect on April 1. PC staffer Bruce McIntosh has already quit over it.  The former head of the Ontario Autism Coalition, McIntosh called the Amy Fee plan “indefensible”, and that it will reverse all of the progress that the Liberals made toward decreasing wait times and clearing the current wait list:

“But now that’s all been thrown away for something that’s not going to work and isn’t equitable,” 

Bruce McIntosh

McIntosh told the CBC that needs-based funding is “absolutely critical.”

Concerned parents have been picketing outside Amy Fee and Lisa McCleod’s office, and the offices of other MPPs in the province.

Some of Windsor, Ontario families involved in the consultation process feel like their input into what they’d like from the new program was miscontrued (Listen to an interview with one of the Windsor parents in the linked article.)

KidsAbility CEO Linda Kenny shares Bruce Mcintosh’s fears that the money available to distribute to families will be spread too thin, and that the plan actually removes choices for families rather than increasing them.  

Public agencies that provide supports will also lose money – KidsAbility will lose 20% of its base funding.

The Amy Fee Plan is Going Into Action – Soon

The Ford government is in a hurry to implement this. The Toronto Star reports that “government officials will help families register for the new childhood budgets, although it is not yet clear how they will get access to the wait lists, which are currently held by the nine regional service agencies. Nor is it clear how newly diagnosed children will be registered.”

These details will all be settled for April 1, when all of this goes into effect, the government assured the Toronto Star.

I’m not holding my breath on that, nor am I at all convinced that the Amy Fee plan for making sure that autistic children in Ontario get their needs met will work.

Let’s hope I’m wrong.

Learn more about the new Ontario Autism Program

The post Amy Fee Has Revamped The Ontario Autism Program appeared first on Girl With The Cane.