“I want my son to be able to access the world around him” – what the new changes mean for children on the autism spectrum and their families

Angela is a proud mom to a 13-year-old boy named Misha – he loves ice-skating, summer camp, recently was the recipient of his school’s Perseverance Award and lives with severe autism. Because of ABA therapy, Misha developed the skills he needed to live an ordinary life.

“There’s this quote that really resonates me: parents of kids without special needs want their kids to live extraordinary lives, and parents of kids with special needs want their kids to be able to live ordinary lives,” Angela shares.

But it is going to get harder for kids like Misha to be able to live ordinary lives – last month Ontario Conservative Minister Lisa Macleod revealed plans to change the province’s autism program. These changes have been largely criticized by not only the autism community but by experts and professionals in the field.

Angela explains that her son has been on-and-off the waitlist for years since he was diagnosed at 18-months. Misha first came off the waitlist when he was 3 went back on when he was 6. He received intensive and life-changing ABA therapy – therapy that would have cost around $80k out of pocket per year. The new Conservative plan does not fully cover any child’s therapy but instead offers what many families consider to be insufficient relief.

Once Misha was back on the waitlist, Angela and her husband worked full-time to be able to afford his treatment. 100% of her paycheck and a significant portion of her husband’s helped pay for this speech and ABA therapy as well as homecare. Angela not only worked full-time job but also designed the programs, managed the staff, and stayed up every night until 2am to learn more about the best treatments.

Unfortunately, this lifestyle was unsustainable – Angela reached her breaking point. She left her job and took measures to address her own health. Her family cut corners and implemented an even-more stringent budget to make-ends-meet. Life was manageably unmanageable – a reality too common for families coping with autism who do not have access to the resources they need.

Luckily, in April 2018, Misha came off the waitlist. He was able to get the therapy he needs – lifting a huge weight off Angela’s shoulders.

“I want my son to be able to access the world around him,” Angela shares – and with the help of years of fully-funded therapy, he can. Recently, Misha attended an overnight school trip – a trip he could only take because of the accommodations made and also because of the ABA therapy he has had. Despite his severe autism, Misha can put on his own clothes, can communicate effectively and has developed coping mechanisms when he feels overwhelmed.

Many consider the waitlist to be less than ideal but also reference it as a source of hope – without the possibility of fully-funded therapy, life with autism is extraordinarily bleak. This is why Angela and a group of parents have organized – they attended rallies, contacted their MPPs and organized their community demanding the government to not go through with these changes.

Angela recently spoke with her MPP Roman Baber when she shared Misha’s story with him and urged him to stand up for her family and families like hers. To her disappointment, Angela was met with hollow words of sympathy and an MPP who was steadfast in supporting his government.

Angela notes that Misha is not in the worst position. Children who are younger than him and their families will have little support. The new program no longer fully covers the ABA therapy Misha received as a child.

The repercussions and the fallout of this cut will affect thousands. Children living with autism will be integrated into a school system that is not ready for them. Many will not be able to afford the ABA therapy that has changed Misha’s life and these families will have to cope with financial and personal strain. The reverberations will be felt by many – affecting everything from classrooms to the mental health of families who cannot access the supports they need.

“It’s infuriating when the Ford Government says they’re for the people – if you’re for the people, then is my child not a person?” Angela expressed.

 

*Edits have been: other versions of this article misspelled MPP Roman Baber’s name.

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