Lucy Perlin is 6.5 and was diagnosed with Autism Spectrum Disorder when she was almost 3 years old. She is on the moderate end of the spectrum with cognitive and language delays, sensory challenges, and difficulty following instruction.
After two years of ABA therapy and a school readiness program, Lucy began kindergarten in the fall of 2017 with the Ottawa Catholic School Board. She was supported by an Educational Assistant, shared with 2 other children with higher needs. We decided to move Lucy to a private school when we learned that she was eating her yoga mat everyday at nap time. The busy classroom and lack of one-on-one support was challenging for Lucy and she spent most of her day running around the class, not participating in peer play or educational centres. Lucy didn't have any friends in the classroom and hated school. She developed anxiety and screamed everyday at school drop off.
Since the fall of 2018, Lucy has been attending a private school with a one-on-one ABA therapist who assists her with realizing academic and social goals. We chose a private school not only for the smaller class size, but also so that she would have access to the support that she needed. Her program is specifically targeted to assist her with her specific challenges so that she can attend class independently in the near future. Full-time therapy (both at the school and the house) currently costs approximately $4000 per month. However given the strides Lucy has made in the last 6 months, we anticipate reducing the level of support within the next year. Since starting this program she has been using more functional and conversational language. She now interacts with peers, and follows routine and instructions with limited support. She has started reading, doing mathematics, and drawing. Most importantly Lucy LOVES school. She is driven and motivated to succeed. She is happy, cooperative, and has friends. She is invited to birthday parties and is accepted and included within the school community.
Since starting this therapy and seeing Lucy's gains, I'm not up at night worrying about her future in the same way. I can picture her getting a job and living independently as an adult. Because she is getting the support she needs NOW, I am confident that she will grow up to be a contributing member of society.
Under the new OAP, we will have to pay approximately $40 000 a year out of pocket for Lucy's therapy. This cost has significant implications for our family and our future. I am particularly worried about how this will impact my son who is 8 years old and has mental health challenges. I worry about how long we can keep up with this expense, particularly if Lucy's needs change in the later grades. I also worry about what would happen if my husband or I lost our job or could not longer work due to health reasons.