Thank you very much for giving me the opportunity to speak here today.
I do go a little bit fast, but I'll try really hard to work on the pacing.
I have been involved with the Easter Seals for well over 30 years. I am the parent of a young person who was supported and I have lived experience of the ways that young people fall into poverty.
I've come here today with a message around families. The families of children with disabilities thought they would be part of this disability benefit. Because it says “persons with disabilities”, there was an expectation that it might be broader than it currently is. One thing I would look for in the preamble is to see if we can start to talk about how this may be the first stage in terms of supporting people with disabilities.
When I represent families, I see that they come from a place of fear at the very beginning as their child is diagnosed. They learn to advocate for their child in the education system and in the health care system. On a daily basis, these parents face the challenge of coming up with the money to pay for the equipment and programs that their child may need. Easter Seals Ontario tries to fill that gap. With money raised by donors, we assist families with the cost of equipment. Even with the contribution we make, there still can be a gap that the parents can't fill. Some parents will take on additional debt to cover that, and many other families will do without.
The cost of equipment for somebody with a physical disability can be astronomical. We're talking about $40,000 for a power wheelchair. There is some government funding, but it is very much aimed at the base model.
Recently, some young people we're supporting have gone to the wheelchairs that allow them to go from sitting to standing. We've seen the self-confidence and growth when they have access to that kind of equipment.
However, what Easter Seals funds is basic equipment, particularly bathroom equipment, which is not covered by the Government of Ontario, and accessibility equipment to enable a child to get into and out of their home and around their home, whether this be lifts or ramps. We fill in that gap.
Many families do not have enough money to buy equipment, so they have to come knocking at the door of charities. Charities do a wonderful job of filling the gap across the social service sector, but as a parent, it's hard to know that you can't support your child and that you have to go knocking at doors, begging to get extra money.
An additional challenge faced by families is the fear for the future. We're very excited about this bill and the fact that it is going to support working-age individuals or persons with a disability, because we know that one of the family's biggest fears is that there will not be enough money to support the person when they get to adulthood.
Some of the kids that we've supported at Easter Seals have a rosy future. They may be going on to post-secondary education. They have career prospects. However, for the majority, it's going to be a piecemeal of part-time jobs, periods of underemployment and unemployment. In addition, those with very severe disabilities are not going to be able to take part in work but are looking for full participation in the community. All of these kids want to be fully included. When their income is 40% below the poverty line here in Ontario, it's very challenging to get the things that make life worthwhile.
The earlier speakers were talking about having to make choices and families adding their names to the list for affordable housing. As has already been indicated in the previous panel, that can be a wait of many years. In some places it's 20 years, and aging parents are still having to support their child because there is not enough money for the individual child to manage on.
I'm here to talk about those fears and to advocate consideration of a long-term plan to expand the Canada disability benefit to include all people with disabilities, including those under the age of 18 and potentially those over the age of 65.
Do I have any more time?