Open Letter to Lisa MacLeod, Doug Ford and Lisa Thompson:
You don’t know me. And why would you. My life is inconsequential compared to your lives. We don’t have the same friends. We don’t have the same interests. We don’t live in the same city.
However your choices within your job descriptions, are GREATLY affecting my life. Greatly affecting my child’s life. Your declarations and new programs don’t affect your daily lives. They don’t affect your children’s lives. Yet you are directly affecting thousands of families alike.
All of you have single handedly, ripped away the potential of my son receiving an additional 6-12 months of IBI therapy. You have done this. You have destroyed our families hopes and dreams for our son. Elliot is an exceptionally amazing kid. A kid who’s therapists and senior therapist and program manager all say is “their super star”. Elliot has come so far since starting IBI. In his first 6 month block of government funded IBI therapy (therapy that we waited 2 years for on the waitlist), it took him 3 months of that block just to get adjusted to “The Ladies” (as he called them...his therapists). It took them 3 months just for him to not meltdown. And once he became accustomed to them, he began to THRIVE. His charts, graphs, were all showing significant improvement. And once his first block of IBI was finished, I sat down with his team and they told me: as soon as they saw his ABELLS, they knew he would be getting another 6 months.
So here we are, over a year later since he began, and his graphs and charts and abells are all showing the same success. They are all pointing to the fact that he SHOULD continue in IBI therapy, and that had you not ripped this away from him, he would have gotten at least a minimum of another 6 months. And not only have you taken this away from us, but other families currently in service who have waited their turn for therapy.
So now where do we stand? We are all hoping and praying that you LISTEN TO US. That you PAUSE THE PLAN. Because at least if you pause this plan, the kids in service may actually stay in service until a decision or better plan is made.
What kills me the most is actually looking back on my Facebook Memories from a year ago or two years ago or three years ago. Three years ago we were still in diapers. Three years ago he was non verbal. Two years ago he couldn’t tell me what was wrong. Two years ago we were still in pull ups. Two years ago we still had major transition issues.
He started JK in 2017, going every day from 9am-11am, with two EA’s decked out in full Kevlar gear. He started IBI January 2018, going Mon-Wed 9:30-3:30, and fridays 1pm-4pm (this is the schedule we are still on). By the end of JK he was going to school from 9:15-2:30, still two ea’s, but no protective gear. Now he goes to school Thursdays 9-2:30, one EA, no protective gear, and spends 95% of his day in the classroom.
This past March Break, he came to Disney On Ice. And the very next day he WALKED WITH ME in No Frills. Followed instructions, did not melt down, did not run away.
Where does that leave my family right now? Scrambling. Angry. Upset. These massive achievements should be bringing joy, but all I can think about is how badly will he regress. How badly will he regress over the summer months? As his end date for government funded IBI is June 26th, and who knows how much $$ will be in those childhood budgets. Will I have to remortgage my home? Take out a line of credit? Throw a fundraiser?
How much more progress would he have made had you not taken away his healthcare. Would he have been eating? Would he have been speaking more? Would he be able to engage in social situations without assistance? Would he not have to reply on me constantly holding his hand when we are out, in fear of him running away?
You don’t know me, or my family, or Elliot. But just because you don’t know someone, doesn’t mean your actions aren’t directly affecting them. Please, go back to the table, fix this new plan. Elliot is depending on you to fix this plan. He deserves a chance to thrive.