1/ I am the parent of autistic children and I need to stop watching Question Period in the Ontario Legislature.
I need to stop putting myself within earshot of redundant, scripted talking points that may sound good on paper, that may yield an MPP an “attaboy” (or girl) from
2/ someone on the sidelines who doesn’t know any better, that may earn someone political points for “making good” on promises their opponents failed to keep.
But I know better.
I know that best intentions from professionals were put on paper then twisted beyond recognition
3/ by bureaucrats who care nothing about the people they are paid to serve, and everything about the bottom line.
I have 2 school aged autistic children in Ontario. So I tune into Question Period to see if the Opposition delivers on holding government to task. I hope they will
4/ grasp onto the right words to fire across the aisle and truly capture how much trauma the @fordnation has subjected upon families who were already in crisis before the program they depend on was quite literally demolished.
I need to stop listening to Question Period. Because
5/ it hurts to think that the people elected to help us are so impossibly far off the mark—and that they think they’re right.
The new “Needs Based” Ontario Autism Program is a disaster. In 2019 @MacLeodLisa loudly and repeatedly, pummelled the @OntLiberal, bellowing across the
6/ aisle, chastising them for allowing a Waitlist to grow to 23k children. Today that Waitlist is more than 50k children long. And while true that some will require support where others won’t (by the time their number is called), 50k children must first go through an
7/ administrative process that will take take. And so many families were out of time the day they registered for the Ontario Autism Program.
I have to stop listening to Question Period.
I can’t listen to continuous rhetoric that talks about how “good” things will be, versus
8/ focusing on the 50k kids that need help now. 50k kids that require TIME SENSITIVE help now. Kids that spent more than half their lives on waitlists who will be penalized for being too old once they get to the front of the line.
I can no longer listen to the daily, televised
9/ gaslighting that the Minister & Premier don’t even bother to show up for.
Sure, lump sum payments were dealt out to families, who then couldn’t access therapy on account of the pandemic or the massive capacity crisis in our province only made worse when @fordnation cut off
10/ the funding that kept their doors open. Funding shrouded in misinformation and red tape. Funding distributed without plans, guidance or even a reliable contact for assistance. Funding to seek out non-existent health care supports in the private sector. Funding that is all but
11/ useless to marginalized families and those Northern, rural or remote areas.
I am not hopeful. Tomorrow a child will be diagnosed and will automatically be faced with a Waitlist of 50k children before them. Autistic children are not supported. Families have been adrift for
12/ years waiting for actual, meaningful support. Anything out of the mouth of @fordnation et al. may be a nice idea, but is an outright misrepresentation of what is going on, and how families are actually affected by these policy changes. Meaningful, evidence-based clinical
13/ services have been put on hold unnecessarily for 2 and a half years. There is no getting that time back. And instead of focusing on the colossal mess that grows bigger every day—we hear about “the new program” that very well may be “needs based” but will cut severely affected
14/ children off at the knees, that is discriminatory and aged based, that makes zero promise and takes no assurances to ensure that needs will be MET, that is still an utter mystery after years, that is an EXPANDED VERSION OF THE @MacLeodLisa TRAINWRECK that @ToddSmithPC
15/ admitted was A MISTAKE.
50k children have parents and grandparents and aunts and uncles and friends and therapists and teachers and I hope to whoever you believe in that they remember the unnecessary pain, confusion and helplessness that @fordnation inflicted on families
16/ when it comes time to vote in 2022.
I am angry. Disappointed. Demoralized.
I am frustrated. I am desperate. I am outright enraged.
I feel nothing more than vitriolic disgust for @OntarioPCParty.
I am sick of the lies. The misleading of the public. The dancing
17/ around both the issues and the stories that are hard to hear.
I am STILL looking at my watch.
And I have to stop watching Question Period. My tolerance for bullsh*t has been exceeded.
1/ Offering peace of mind to 25% of children will not placate 29k desperate families.
A year ago, thousands across the province rallied against a generalized funding program that would meet the needs of some, create waste where unneeded and leave many without the support they
2/ desperately require; particularly those with severe needs and those who are over the age of six.
After years of waiting, immediate funding, even if it falls far short, may very well be “better than nothing”. Families in crisis may prefer to take something for fear that they
3/ will otherwise remain on a waitlist forever. This is survival mode after years of disappointment and desperation.
Get help to families immediately. Urgency is required, but also in a method that doesn’t force 29k kids into one category or another, sending a message that this
1/ Today is November 19, 2019. And we are still waiting for a plan from the Ontario Government.
Advocates, parents, researchers, therapists, stakeholders have reiterated to the @fordnation government, time and again, that urgency is critical.
And here we are.
2/ going on 10 months since @MacLeodLisa flogged us with her “plan” to remedy the Ontario Autism Program we are no better off than where we were.
Throughout the summer, while @ToddSmithPC was touring the province ‘listening’, the consistent answer to our questions was that
3/ ‘The Panel’ was hard at work on their recommendations, which we saw come to fruition just shy of November. The Panel recommended Needs Based Therapy. The Panel recommended Urgent Response Services. The Panel recommended reverting back to a chronological waitlist. The Panel
1/ Tonight, maybe three blocks away from where I sit, a Santa Claus parade is still chugging it’s way down the Main Street in Barrhaven, #Nepean. I was there. But I had to leave.
My husband left maybe 10 minutes before I did. My son Jack has severe autism, and each year we try
2/ our luck with the parade, and each year, it’s no better than the last. Too late, too many flashing lights, too many bad memories from the year before. This year may have been the nail in the coffin. He doesn’t have many words to tell us, but it’s clear this “fun” Christmas
3/ activity just isn’t for him. My husband took him ahead home leaving me with my daughter who is also on the autism spectrum.
The Parade has been cause for reflection for me. A year ago, we stood roadside, and with just the right amount of happenstance, @MacLeodLisa’s
1) Hi @ToddSmithPC. I hope you can find a moment for this, and I’m willing to try every avenue to reach you, as this is important.
I’ve spent the past year trying to advocate for services for my family. I have two children with ASD and had the opportunity to tell you about them
2) In person on July 3 in Ottawa, and again on August 19. I’m tired, @ToddSmithPC, but I’m privileged and I know it. I have a partner who stands equally beside me in every aspect of parenting. I have extended family who have been ready and willing to support us both
3) financially, and with extra sets of hands when needed. I was able to leave my job to care for our family. We accessed tens of thousands of dollars in savings, and tens of thousands of more in credit to buy early intervention for our kids. We are tired,
1/ Suppose we woke up tomorrow morning feeling 100% optimistic and satisfied in the @fordnation government’s promise for the Ontario Autism Program. The anger is gone, the trust is there, and come April 2020, our kids will begin transitioning into a Needs Based Program. Cool.
2/ For the first time in a year we wouldn’t feel compelled to protest, rally or advocate constantly for the well-being of our kids. I bet it would feel good, just to trust, to relax, to appreciate what we’ve been promised.
Let’s sit with that for a moment.
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...
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3/ Ok. Now what?
⏰If your child is on the list, you’ll wait for a call. Or a letter in the mail. If you had a waitlist rank before April 1, it doesn’t mean much anymore.
⏰A private therapy centre calls and has an opening for your child. Should you take it? Should you pass
If in Ontario, and your child is diagnosed with Autism, you will need:
1. Savings. If you’re hoping to purchase the bare minimum of health care services for your child.
2. Credit. Because savings will run out in a matter of months, if not weeks.
3. Collateral. As therapy can span years. Selling a car or remortgaging a home so your child can learn basic life skills is a reality.
4. Six-figure salaries. And even this isn’t the answer; no one has an extra $80k lying around to pay for clinically recommended services.
5. Family with Money. If you’re lucky, your support system will come to the rescue to help out for a month or two.
6. Time. Because @fordnation and governments that came before felt that a 2, 3, 4+ year wait for service, that is intended to be delivered in early years,