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From a sibling’s perspective

Deane is my brother.

He is physically and developmentally disabled and he is about to lose most of the support services that help him live a healthy, engaged life. Why? Because he will soon age out of the school system.

That’s right. When Deane and thousands of disabled young people like him reach the age of 21, the majority of support services provided by our society stop. Families like mine will be left with only their abiding love because there are few to no activities, facilities or programs to meet their children’s extensive needs.

Soon, my exams begin and Deane graduates high school. Graduating is a big deal for Deane and an even bigger deal for my parents because my brother’s future is so uncertain. Going into post-school life is hard for anyone. When I graduate I will have many choices of what to do with my life. Deane’s choices are limited by his disability.

The plan right now is that he will stay at home with my mom and dad until he makes it to the top of a 5-to-25-year waiting list for a place in a special care home. The challenges are endless. One of my parents may have to stop working, meaning one less income. And, what will they do all day – day after day – to keep Deane stimulated and learning? Getting out and about is not easily done. Neither mom nor dad can lift Deane by themselves and his mobility lift can’t go everywhere with him.

Deane went to a day program outside the city as a test to see how he liked it, and whether he and the program can fit together. He said that he at least liked it a little bit. I guess it will take a while for him to get used to it. Perhaps he will try this next year but because it is such a far commute it is a temporary fix, not a solution.

As difficult as this situation is, my parents and I are a loving, positive team. We are not wealthy but we have some resources. When I imagine being a single parent who doesn’t speak much English, who has a developmentally disabled child, I despair. When I imagine a support system that would help Deane and all disabled people throughout their lives, I wonder why it does not exist in our wonderful Canada.

We need all levels of government to recognize this, and put into place a re-defined support service system that helps the disabled and their families lead lives of joy, security, and comfort. We need post-secondary education options for these people who now have nowhere to go. We need support services that do what parents, siblings, and un-paid caregivers often can’t do by themselves.

Please bring the plight of maturing disabled people and their families to the attention of your representatives at all levels: municipal, provincial, and federal. Tell them that getting your vote depends on how well they support all the people of Canada. Deane and I know that’s how democracy works.

Rayne

Editor’s note: Please add your own comment to the story I have shared and share it with your MPP and anyone else you think needs to hear this message. You can find your MPP here: https://www.ola.org/en/members/parliament-42

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