Thread by @ottawa_asd_mum

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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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

4/ it up? You may have waited a year for this spot—maybe you could try to pay privately while you wait for your application letter for a Childhood Budget. But you haven’t the slightest as to when that will be. Will it be within the next 8 months? Or beyond April 2020?

5/ ⏰You call your Regional Provider for some clarification. They have no information about the Waitlist. They encourage you to call MCCSS.

⏰MCCSS can read from a script of predetermined responses—none of them have anything to do with your child, as they don’t have access to

6/ your personal information. They encourage you to call your Regional Provider.

⏰You decide to connect with your Regional again to inquire about the support programs/workshops available to waitlist families. You learn that they are now fee for service, if available at all.

7/⏰September is practically on our doorstep. The school wanted to know in June what your child’s schedule would look like; but we don’t have that information. In the interim, you hope that your child will have access to classroom support, that that support won’t be taken away if

8/ they are called up for service, and hope that special transportation will be able to accommodate you if it does. Because you have a job, and can’t leave midday to transport your child from school to therapy or vice versa.

9/ ⏰Your child continues to struggle. Challenging behaviours are unmanageable and you fight through each & every day for your child. Hoping that soon they’ll get some help. That your family will get some reprieve. That you will get guidance and support to ensure your child can

10/achieve their best possible life: happy, supported, accommodated.

⏰You consider selling your second vehicle. Remortgaging your home. Putting a month or two of private therapy on the line of credit. You weigh your options. You try to make financial decisions blind.

11/ not knowing how long you’ll be on your own to make it work. You try to validate the sacrifice of a family vacation, a new washing machine, contributions to RRSPs, your savings.

⏰You contemplate leaving your job. Are your efforts worth more at home? Could you learn the

12/ skills to teach your child yourself between drop offs & pick ups & paperwork & laundry & meals & housework & appointments & keeping up with changes on the MCCSS OAP website.

⏰You check the site religiously hoping for something to offer clarity, but it’s not updated often,

13/ and largely isn’t reliable.

⏰You glance at the calendar and note that your child has already spent 18 months, 29 months, 42 months on the OAP waitlist, but no worries. We’ve been promised a Needs Based Program to be implemented in 8 months. And your child will receive

14/ service something between today and their 18th birthday.

A promise doesn’t pay the bills, or help with the family budget. It doesn’t coach you through a meltdown or prevent elopement or self injurious behaviour. It doesn’t print, cut and laminate the PECS or cover the cost

15/of sensory materials. It doesn’t have answers at the bank or in a meeting with the school. It doesn’t offer a shoulder to cry on, or comfort during your sleepless nights. It doesn’t wipe away the tears. And although you think it may, it doesn’t offer hope for a

16/brighter tomorrow because today is dark and bleak and uncertain.

There will forever be a gaping hole in the Ontario Autism Program between Summer 2018 and April 2020 where Needs Based Therapy was off the table. Where 10 months of that time was devoid of any service

17/offers at all. This isn’t something that can easily be healed with the promise of something better. Those 10 months translate to lost time that children will never, ever get back. Lost time that may very well impact them for the rest of their lives. Lost time that will

18/Forever leave parents wondering “what if”.

Your next steps should not simply be focused on April 2020, but HOW you get to that point: How you share information, offer support, explain your progress, manage expectations.

And please, kindly, forgive us— As much as we would

19/ love to revel in the amazing news of a forthcoming needs-Based program, it will never ever be that easy. Our patience ran out long before @fordnation took office, and it is damn hard to look back on weeks upon months upon years of challenges and know you’ll be waking up to

that same feeling another 237 times. At least.

Believe us when we say, we want nothing more than to be happy, overjoyed, & outright ecstatic about this, but as of right now, it’s far too big a challenge to add to our already heavy load.

Autism didn’t end at this announcement.

@ToddSmithPC @AmyFeePC @JillDunlop1 @JR_Ottawa @Sflecce @celliottability @fordnation @MTaylorNDP @JoelHardenONDP @maritstiles #autismdoesntendatford #onpoli