Family of 3 children with autism fears for future after funding change

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Jimi and Unseok have three loving boys with ASD. Their oldest is 9 years, the middle child is 6 years and the youngest is 5 years. Each one of their sons are on different points on the spectrum making it extremely challenging for the family to interact with them in a predictable manner. The love and dedication however is commendable, not only from the parents, but also from the grandparents. Their acceptance and understanding of ABA and IBI for their children has contributed to substantial gains in their children; thanks to the funding provided by Ontario government.

Their oldest son is a very loving child but has difficulties in group settings and when interacting with peers. He is also sensitive to loud sounds and has a limited vocabulary. The youngest son is extremely affectionate and has difficulties with staying in one spot, attending, and self help to name a few. The middle son Daniel has challenges with his physical abilities, language, attending, and many other areas of functioning. What we take for granted is what these children strive to learn each day. Therapy has been a life changing experience for the children and their families. Without the funding, therapy would not have been possible, and these children would loose the possibility to grow.

Daniel, the middle child, could not walk when he first came to AIM Children’s Charity and parents had given up hope in his ability to walk. They accepted a life which involve dependency and a life in a wheelchair. They dreamed but their dreams seemed far fetched and impossible. But just like any child that comes through our doors at AIM, we saw the possibility, we saw the potential, and became committed to making the possibility a reality. Suki Choi, the Service Director; Vicente Melgoza, Daniel’s senior therapist, and the team saw potential that Daniel could walk given the right support. Suki conducted research and invited a physiotherapist to work with Daniel in collaboration with our IBI therapists. We can proudly say that after months of work, Daniel is now able to take some steps with support. Although he still cannot walk independently and needs full-time support; he has made tremendous progress and renewed hope where it was lost.

Daniel’s parents believed in him but found it hard to see possibility in the face of his physical challenge. They were helpless, powerless, stressed, and much more amidst the dream, love, dedication, and care for their children. It was through support, hope, faith, belief in the government, in the team, and in the possibility that Daniel will walk; that he made such tremendous progress. Therapy gave Daniel that second chance, therapy which was possible due to the financial funds and the vision that AIM had of Daniel’s future.

But while Daniel made progress and continuing to struggle to move forward, his funding from Ontario Autism Funding will end in a few months. Currently with Daniel’s funding from the government, he receives one to one therapy at AIM from 9am to 3:30pm. With the cut in funding, he will go from full time service, to less than half of the service hours. And like other impacted families, this family will have no choice but to send Daniel to school full-time.

Daniel will go to a public school and it is likely that he will spend his entire day in a wheelchair; due to the lack of support and no teachers with a comprehensive understanding of his needs. When he was first learning to walk, he was exhausted trying to stand. But he never gave up, he was driven. At AIM, the impossible once again became possible where he went from sitting in a wheelchair to using a walker, to walking a few steps independently. He has gone from being non-verbal, to vocalizing. He can also transform his needs and wants into request using Proloquo-2-Go to communicate.

Imagine seeing your impossible dream become real and then having it snatched away from the very government that assisted with making this dream real through financial support.

Daniel’s parents are terrified. They fear that the progress he made towards being independent at AIM will be in vain. They fear that he will be pushed around in a wheelchair at school and his ability to walk that the team and him worked so hard to achieve will be lost. His muscles will get weak, his drive will disappear, his independence will be taken away. They fear his ability to request with his iPad will be lost because it is unlikely the assistant or teachers in his classroom will have the time or the skill to use his communication program.

This family is also scared about the future of their other children who are also diagnosed with ASD.

The family has applied for the AIM IBI subsidy program; so we can try to offer as much one-to-one therapy as possible to their children. But even with that subsidy program, which the organization provides through fundraising and donor support; Daniel will not receive the service recommended to continue supporting his progress. Their youngest child will not receive full time therapy as well and will also need a placement in a public school. His parents fear what that will look like, since he can only sit still for about two to three minutes. Their nine-year old has very serious sensory issues and no group readiness skills which will also make public school difficult for him.

These are the very real effects of the changes that the Ford government has made to the Ontario Autism Plan. Parents will pay what they can, of course everyone wants the best for their children, but there are VERY few families in the province who can pay 60-80 thousand dollars a year without going into debt or bankruptcy. The other option is to not give a child the support they need to achieve independence and forced them to be dependent on government social programs for the rest of their life. The Ford government is giving parents an impossible choice. Where AIM focuses on making the impossible possible, the government is focused on making the possible impossible.

Please click here for the interview of Jimi and Suki at CTV Your Morning show.

 

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