I couldn't agree more with you about supporting families. It's so powerful, Alison, when you speak about this. If the families aren't supported, the person living with the disability will not be successful as well. You have hit a very big nail on the head.

A letter was sent to the committee, and I asked the clerk to make sure that I was allowed to use her name. She has written in multiple times. Her name is Megan. Megan is an autistic Canadian living in Sudbury, Ontario, and she has a lot of concerns. One of her big concerns is, “Will the bill consider anyone working or is it going to discriminate based on age? If so, that's not okay and will leave thousands of Canadians left out.”

Alison, as a mom of somebody who is living with a disability, you know that “working age” is different for somebody with a disability. How do you feel about Megan's concerns and what do you think needs to be changed in the bill to ensure the safeguards are there to make sure it's executed properly?

6 p.m.

Senior Manager, Advocacy and Family Engagement, Easter Seals Ontario

Alison Morse

Thank you very much for allowing me to comment.

In terms of amendments, right now this bill says that it's the Canada disability benefit, and then in the small print, it says it's for working-age Canadians. I think we need to be thinking bigger in terms of who's going to be included in this Canada disability benefit, and then work on each sector separately.

The working age is probably the group that jumps to mind because there is an expectation that families can take care of their kids, but the experiences that I've had and seen amongst the parents supported by Easter Seals is that it's a major struggle. I would like to see an amendment that acknowledges that people with disabilities are of all ages.

Further, as we get to the regulations, there needs to be lots of input on them to see whether there is a way to look at a lifelong disability. When you're diagnosed as a baby or a preschooler with a disability that is going to affect you permanently for the rest of your life, there needs to be a way to provide the Canada disability benefit to that person. I realize that's not what the thinking was in terms of the early stages of this bill, but I think it's an important direction to recognize and work towards.

In terms of other amendments, families are very concerned about the process for applying. We need to have it so that it's user-friendly, that it is not complicated, that there are people to assist with the process, and that there is an appeal or a dispute resolution mechanism to allow families and other people with disabilities to have an appeal to find out why they were denied or why their benefit was potentially reduced.

I think those would be some important amendments to consider.

6:05 p.m.

Conservative

Michelle Ferreri Conservative Peterborough—Kawartha, ON

Those are excellent amendments, and I hope this committee puts those forth.

To go back to Megan's letter, which I was referring to earlier, she touched on exactly what you just suggested, Alison. One of the things she said in her letter to the committee was this: “Is the government going to allow doctors to bill this to their individual provinces so that Canadians can get them filled out for free?”

What is the cost that's going to be associated with this?

I think you hit a nail on the head with regard to navigating the system, which is a problem we see over and over again with a lot of programs. The intention is good—that's great—but where is the execution in terms of making sure that it is accessible and easy to navigate? Sometimes this is hard even for somebody who doesn't have an intellectual disability. It is sometimes a big challenge for somebody who doesn't have that, so this is another barrier put in place if we don't get this right in the bill. I really appreciate your bringing that up.

6:05 p.m.

Liberal

The Chair Liberal Bobby Morrissey

Ms. Ferreri, we're well over your time, but these are important issues.

Now we go to Mr. Van Bynen for six minutes.

6:05 p.m.

Liberal

Tony Van Bynen Liberal Newmarket—Aurora, ON

Thank you, Mr. Chair.

I'm happy to see Easter Seals Ontario with us today. I've been engaged with the Easter Seals society for almost 30 years, mostly through the Persechini Easter Seals Run/Walkathon. We've been able to raise in the range of about $3 million to support Easter Seals kids in Ontario.

However, it shouldn't have to be that way. I think that's what's so important about what we're considering today in terms of providing support. What I've heard is that there are a number of very complicated dynamics that need to be considered as we go forward: the availability of housing, how this fits with the national housing strategy, how it provides a basic income. There are additional needs beyond the basic income, and those are support programs for personal support workers, equipment, etc.

I think it's really important that we actively engage the disabled community in developing the program, the mechanisms, the applications and the appeal processes.

My first question is for Easter Seals Ontario.

I know that Ontario has regulations different from those of any other province, some of which I think are disappointing and include a clawback. How would an organization such as yours be engaged in helping develop the program through these regulations on a provincial basis?

6:05 p.m.

Senior Manager, Advocacy and Family Engagement, Easter Seals Ontario

Alison Morse

Easter Seals Ontario would be very pleased to be engaged in those discussions. We would like to have our voice at the table so that we can think about the children and the futures they face, futures that may be limited by poverty. I think it's really important to be able to talk about that and be at the table.

Easter Seals would be very pleased to do that, and not just people who are staff. We have a number of affected parents who would like the opportunity to participate in the process, as well as some young adults with lived experience who would really like to talk about it.

I think we could contribute voices who need to be considered and also some of the ideas that need to be shared.

6:05 p.m.

Liberal

Tony Van Bynen Liberal Newmarket—Aurora, ON

Are you aware of provincial organizations that would be able to provide province-specific inputs that need to be considered as we develop these regulations?

6:05 p.m.

Senior Manager, Advocacy and Family Engagement, Easter Seals Ontario

Alison Morse

The problem is that when you're talking about the disability community, it's a really wide range of people and disabilities. There are a lot of aspects to it. We've been listening to presenters about gender. We've been hearing about the challenges of housing. I think it needs to be a coalition of groups that can speak to various aspects and then for that group to assist with the discussions at the provincial level. You're right; it will vary province to province.

6:10 p.m.

Liberal

Tony Van Bynen Liberal Newmarket—Aurora, ON

The other concern that I have is this: How do we recognize the unpaid supports that families are providing that are not covered? First it's to recognize that it's going on and how important that is, but my concern is that if the parents pass on, how are we going to provide for these children who have had these supports without any cost to the government?

6:10 p.m.

Senior Manager, Advocacy and Family Engagement, Easter Seals Ontario

Alison Morse

I would say it's a major issue. Aging parents are very, very concerned. You might be concerned when your child is 15, but by the time your child is 45 or 50, you're definitely alarmed, especially if you're the major person providing the care. One of the things that we really need to be talking about is long-term planning and helping the families access a variety of resources so that their child is ready to leave the home well before the parent is incapacitated and no longer able to provide them with care.

We've talked about providing a Canada disability benefit to individuals, but it has to be part of a broader strategy to improve the services and supports that are available to people with disabilities. That includes help with the cost of equipment, but it also includes the cost of programming, including the personal care support workers who are needed by many, many individuals with a disability.

6:10 p.m.

Liberal

Tony Van Bynen Liberal Newmarket—Aurora, ON

You mentioned earlier the cost of a wheelchair, the accessibility and having to modify the bathroom for a family. What would you say the costs for those would be?

6:10 p.m.

Senior Manager, Advocacy and Family Engagement, Easter Seals Ontario

Alison Morse

I mentioned the cost of a wheelchair. A power wheelchair can be up to $40,000. A manual wheelchair can cost as much as $15,000. We're not just talking about a plain wheelchair that's off the shop floor; these are customized wheelchairs that have the appropriate headrest and the appropriate lumbar support. They may have additional features that support the movement of the arms or the legs or stabilize them.

Putting in a bath lift to enable a parent to move their child from their wheelchair into the bath is $2,300 to $4,000. A ramp into the house can be $8,000. A van lift to get your child into an accessible van can cost as much as $35,000, and that's in addition to the cost of the vehicle that can be modified to include the van lift.

A simple shower commode chair is the chair you put the child in to be safe when they are being bathed in the shower. It needs to be able to support their trunk and head, to make sure that they are safe while they are being bathed.

One of the devices we're seeing being increasingly prescribed is a stander. A stander puts a child in the upright position and mimics the way that the rest of us stand. It has a huge positive potential in supporting the child to bear weight through their bones, which strengthens their bones. It also puts their muscles in a different position. It can reduce contractures. Most excitingly, it can put the child face to face with their peers.

6:10 p.m.

Liberal

The Chair Liberal Bobby Morrissey

Thank you, Ms. Morse.

Thank you, Mr. Van Bynen. Your time is up.

Madame Chabot, you have six minutes.

6:10 p.m.

Bloc

Louise Chabot Bloc Thérèse-De Blainville, QC

Thank you, Mr. Chair.

Thank you very much to the witnesses.

I'd like to pay special tribute to the Quebec Intellectual Disability Society. I'd like to thank its representatives for accepting our invitation to appear before the committee.

In Quebec, the Quebec Intellectual Disability Society does a very good job of representing people with intellectual disabilities.

A number of things are interesting. I don't have much time to ask my questions, but I'll still have time to ask some of them.

I'd like to clarify that the modalities of the basic income program will go into effect on January 1, 2023. Admittedly, this has taken a lot of work on your part.

You talked about important elements, and I want to ask a few questions about them.

In talking about individualizing benefits, you said that this could serve as a basic parameter for the Canadian benefit.

Why is that important?

Is it an important principle to include in the preamble of the bill?

6:15 p.m.

Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society

Samuel Ragot

The individualization of benefits is fundamental. In fact, it's a prerequisite for the benefit to be functional.

Today, a number of people have said that women with disabilities, in particular, are more likely to experience domestic violence and be financially dependent. Obviously, this is not desirable; it's a situation we want to avoid. In fact, Quebec has begun to address this problem.

As for the federal benefit, that's an issue that can be addressed now, whether it's through the preamble or the regulations. In my view, it's necessary to do so.

6:15 p.m.

Bloc

Louise Chabot Bloc Thérèse-De Blainville, QC

I'm going to talk to you about a concern that has been raised by a number of witnesses, by a minister and by the government, and I would like you to tell me if it's a concern for you as well.

The Canadian benefit should be offered as a complement to provincial programs. In the current framework bill, the regulations will be entirely for the benefit of people with disabilities.

As we know, there are as many programs as there are provinces and territories. So it's not the same thing to work in Quebec or in your province as it is to work across Canada, because the programs are different.

Are you concerned that this dynamic will result in some provinces being tempted to make cuts to their own programs?

6:15 p.m.

Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society

Samuel Ragot

It's certainly one of our concerns. It will be important as part of the negotiations to ensure that the provinces and territories do not use federal money to cut or privatize their own social programs. Access to health care and social services is becoming increasingly difficult. It's obviously one of our concerns.

That said, the negotiations that have taken place in other situations, such as with day cares, have been successful. We still feel that there is an openness to this and that we want it to work. That's what we've seen in informal discussions with cabinet members. We think it's something that's feasible that is actually desirable for everybody. It's desirable for governments to see the importance of supporting people and not making this a divisive issue.

6:15 p.m.

Executive Director, Quebec Intellectual Disability Society

Amélie Duranleau

I'd like to add that it's important that this not be done at the expense of quality universal public services. Complementarity must also be seen in this light.

6:15 p.m.

Bloc

Louise Chabot Bloc Thérèse-De Blainville, QC

I'd like to make a quick comment. With respect to early childhood education services, we followed the example of the Quebec model that has been around for 25 years. So it would have been difficult not to make the necessary transfer.

As far as the bill is concerned, the situation is a bit uncomfortable for us as parliamentarians. We need to establish a base amount, eligibility criteria and conditions, and we are being asked to pass the bill quickly. When we asked the minister about this, she talked to us about a minimum of three years. It's important to be aware of what that means.

Despite all that, would there be any parameters, guidelines or amendments that would already be desirable to put in place to guide the discussions? Is there something that already has consensus?

If you don't have the answer right away, you can submit it later.

6:15 p.m.

Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society

Samuel Ragot

I would say that the only desirable amendment, if there is one, would be the effective date of the benefit. It's the only amendment that would be desirable right now, for a really simple reason. I'm on a public policy panel that deals with these issues. We've been meeting for a year and a half, and we still haven't worked out some of the details of what we would like to do.

I'm told that a panel likes to discuss details, but these are details that are sometimes very technical. It may be easier to work out such details in longer consultations than in a consultation on the reading of a bill.

6:20 p.m.

Liberal

The Chair Liberal Bobby Morrissey

Thank you, Ms. Chabot.

We have Madame Zarrillo for six minutes, please.

6:20 p.m.

NDP

Bonita Zarrillo NDP Port Moody—Coquitlam, BC

Thank you, Mr. Chair.

I'm going to ask Ms. Gammad about some of the work that was done on basic income, but before I do, Ms. Duranleau, when the basic income happened, you mentioned that there was four years to make regulations. Was there a starting point? Was there a previous agreement on what the amount should be or what the eligibility should be and what the timelines would be? You mentioned there was something around timelines. Was there a predetermined consensus on the eligibility and amount before you started the conversation on basic income in Quebec?

6:20 p.m.

Executive Director, Quebec Intellectual Disability Society

Amélie Duranleau

Thank you, Ms. Zarrillo.

The question is for me, but I'll let my colleague Mr. Ragot answer it. He has been involved since the beginning, so he's very familiar with the history.

6:20 p.m.

Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society

Samuel Ragot

Indeed, some of the details were included in an action plan to fight poverty. The basic income program in Quebec is really intended for people who have been severely restricted in their employment for a long time and who benefit from the social solidarity program, which has very limited access but is a good program otherwise.

There were already some starting points, but we are now seeing that the consultations that the federal government has done are also kind of leading us to that starting point. The consultations that have been conducted by large organizations like Inclusion Canada suggest that we are in a position to know a little bit about what that starting point would be.

6:20 p.m.

NDP

Bonita Zarrillo NDP Port Moody—Coquitlam, BC

Thank you.

Ms. Gammad, you mentioned the gender lens, diverse genders and trans persons with disabilities. This voice is often not involved in the making of legislation and is often not at the decision-making tables. I also note that LEAF is doing some work around basic income. I'm wondering if you have any best practices or things that you can share with us about how we can get those voices included.

Right now what's in Bill C-22 doesn't necessarily regulate or ensure that those voices will be part of the co-creation. I'm wondering how we can ensure as legislators that those voices are included in the making of regulations and make sure that this voice is not missed.