Mr. Speaker, today I rise to speak about autism spectrum disorder, and in particular, about its impact on individuals and families in our communities.
I would like to begin by commending the great work of the member for Edmonton—Wetaskiwin when it comes to raising awareness about the needs of individuals affected by autism spectrum disorder.
While today is specific to autism spectrum disorder, I want to raise the fact that many people in our communities face challenges in seeking treatment and proper support for caregivers of loved ones with serious disabilities. I hear from many people at the door, in my office, and in various situations about their challenges.
My daughter has had the opportunity to volunteer as part of a reverse integration project at the Beverley School in Toronto. Some of the students at Beverley School have been diagnosed with autism spectrum disorder. Beverley School teaches students from JK to grade 8, and the philosophy of the school is a team approach to supporting the educational needs of students who have developmental and/or physical disabilities.
I mention this because spaces like the Beverley School are so important to younger students with autism spectrum disorder. One student, okay, my daughter, wrote the following about the school on its blog:
Beverley isn't a place of work nor a place where you have to go to take tests or to have to be forced to learn something you don't want to learn. You are surrounded by supportive and helpful friends, in gym class, H and E would walk in a circle holding hands and then we would try to throw the rainbow ball into the hoop and it turns out S is quite good at basketball. We had fun and that is, in my opinion what Beverley does best, making work that could be tiresome and changing it and making [it] more fun and comprehensible, something a lot of schools are missing and that Beverley excels at.
I have highlighted the Beverley School, because it is one example of the bright lights for children with disabilities and their families. Today I would like to focus on that aspect of today's motion. How can we support people with autism spectrum disorder and their families or caregivers?
I talked with a family in my community that includes two children with the diagnosis of autism spectrum disorder. The boys have been students at Beverley School. The challenges highlighted by their story are similar to what I have heard from many similarly situated families, not just with autism spectrum disorder but also with severe disabilities. The challenges are financial, and there is a need for caregiving assistance.
I would like to describe the concerns raised in the parents' own words:
Since [both boys] are physically able and indeed physically precocious boys, we are stretched to the absolute limit of our endurance to look after them. While we are fortunate enough to be able to afford in-home private support, this, in combination with our expenditures on camps and special programs, costs us about $50,000-$60,000 each year.... As we grow older, we are worn by our sons' disabilities. We worry about their future and our future.... [The boys] cannot be looked after in a home setting as they grow older without professional and motivated caregivers present for 16 hours each day (assuming that they are not in school). There are no publicly provided solutions for a problem like this. We are faced with group home care, which is largely unavailable, or a quite startling financial burden.... [The] publicly supported responses to this sort of disability long ago turned away from institutionalization. We cannot say that we disagree with this. The resulting vacuum, however, has left us in a completely untenable situation.
The reason I wanted to read that part of that family's testimony is that we need to give voice to some of the people who are directly impacted by the issues we are debating today. It is important for us to take into account their perspectives on the needs we must meet.
Today is about autism spectrum disorder, but the general question of supporting individuals with disabilities and their families or caregivers should also be part of this discussion. The issues raised by the person I quoted earlier are similar to many other disabilities as well.
Last week, I saw the play The Boy in the Moon at the Crow’s Theatre in my community. The play is based on Ian Brown’s book about raising his son, Walker, who has a rare genetic disorder. It pointed to some of the same challenges: parent or caregiver fatigue, financial concerns, wanting proper opportunities for a child, and concerns about a child's future as the parents or caregivers age.
I would like us to consider this universality when we consider such issues as family or caregiver supports where a child has been diagnosed with autism spectrum disorder. I would like us to also consider how we can create a framework that includes all individuals with more severe disabilities and their families.
Today I am advocating for such an inclusive framework, a way to ensure that individuals with severe disabilities who will not be able to live independently, and their families, have proper supports.
I had the opportunity recently to hear from Sister Sue Mosteller, of the Sisters of St. Joseph, as part of a consultation on a national poverty reduction strategy. She provided a moving presentation on supporting people with disabilities and their families. She told the story of a family she was working with. Two sons had chromosome disorders. They required constant supervision, and the parents were exhausted. She flagged the need for parent respite and supporting these families.
A common theme that also arises is a concern about long-term care for individuals who will never be able to live independently. What will happen as parents age and cannot look after their adult children? On this point, I would like to tell members what I heard from someone in my community who wrote to me. He wrote:
Unlike children who grow up and become active members of the work force, a severely disabled person, like our son will never be able to do this. This results in increasing costs for our care of him, not decreasing costs like most families. Combine this with the fact that as he turns 18-21, much of the infrastructure we have relied on, disappears or changes.
Years ago, the system chose to migrate children of this ilk to the home from institutions. I have no doubt that this change has resulted in a better quality of life for the children and families. Frankly, I can't imagine it having been any other way, but the system has not provided enough support to those of us at home. My wife can't work as she has to care for our son, I am still taxed at 50%, even though our mandatory expenses can become debilitating.
...the system is awash with good intentions and poor outcomes.
The question today is how we move beyond good intentions to get to good outcomes. I have heard from many people today about the funding that has gone to science to find means of early detection, diagnosis, and treatment. We have heard about how the government is supporting initiatives to better understand multiple factors that can influence autism spectrum disorder, as well as about the projects that are being undertaken to understand autism's development over the course of a person's life.
All of this is important, and I am happy to see these steps being taken to support this research. However, today I would like us to also consider the issue of how to deal with the vacuum that has been pointed out by people in my community. What support are we providing to individuals with severe disabilities, specifically those people who will not be able to live independently, and what supports are we providing for their families? As we have moved away from institutionalization, which I applaud, how will we make sure that across our country, the future for these individuals is secure and that the families are supported?
I look forward to working with my colleagues on both sides of the aisle to move beyond good intentions to good outcomes.