Serge is over 6 feet tall, he weighs around 215 pounds and has multiple diagnoses including autism and, “profound developmental delay”. He displays self-injuring behaviour and while he will threaten others, he will rarely follow through. Caring for Serge has taken an immense toll on his parents and sister, who have suffered health problems as a result. In 2011, his family reached out to the local Developmental Services Ontario office seeking support. Following this, several service agencies refused to provide respite, because their staff were not trained to see to Serge’s diabetes. Months, and eventually years, went by without a placement as the situation at home progressively worsened. In April of 2013, Serge’s mother wrote the Ministry the following message,
“We have been following the rules for years. We need a placement now, or else our son will end up homeless in a crisis. We are not able to care for him any longer. I am on sick leave from work as I am unable to function any more. PLEASE HELP.”
On April 30th, 2013 Serge’s parents abandoned their son to the Developmental Services Ontario office in Ottawa, relinquishing their care of him to the system. Over a period of 16 months Serge was shuffled through temporary placements, as a result of an absence of any province-wide mechanism. Serge did not have a full-time placement until August of 2014.
Serge’s story is not atypical. Adam, a survivor of neglect, did not receive funding and residential placement for a period of two years. Similarly, Layla found herself in 20 temporary locations over a period of 34 days while trying to escape and abusive home. Moreover, Stella who has both a developmental disability and a complex medical condition does not have access to any compatible local placements (as of 2016), due to a lack of coordination across ministries. According to a report by Ombudsman Ontario, “the present demand for services far outstrips the supply.” While these cases represent the most extreme situations, they also highlight the failings of a system that had lead to cases of abandonment, homelessness, incarceration, abuse and families in crisis.
In less extreme cases, the governmental support for adults with developmental or intellectual disabilities in Ontario still demonstrates a need for improvements. The Select Committee on Developmental Services released a report in 2014 in which they acknowledge a number of serious barriers to support. These include:
“long waitlists for many services; repeated, onerous, and invasive assessments; the abrupt termination of children’s services at the age of 18 and school-based services at age 21; unmet health needs due to inadequate primary and dental health care; and a serious lack of services and supports in northern, remote, and First nations communities.”
As is, many individuals and families who require government support are forced into crises as they find themselves spending years on waitlists. Moreover, the access to important services is not evenly distributed across boundaries of geography, class, and race. There is a lack of affordable day programs for young adults with disabilities, there are too few supports in rural areas, and affordable respite options are extremely limited. In addition to this, in First Nations communities there is very limited access to assessment and early diagnosis, and without this people with developmental disabilities are not eligible for many services including the Ontario Disability Support Program. This lack of services is devastating, especially when combined with the current socioeconomic disadvantages facing indigenous communities.
The current status of adults with developmental disabilities in Ontario contradicts the official position of the Canadian federal government which states on its website that in ratifying the Convention on the Rights of Persons with disabilities it seeks to ensure that persons with disabilities are, “full and equal members of society.” Nation wide, over 75% of adults with intellectual disabilities living on their own are in poverty. Working-age adults with developmental disabilities have lower levels of education attainment and are four times more likely not to have completed a high-school degree. Their median personal income is less than one third of the able population’s. This is not illustrative of a government that strives to ensure that persons with disabilities are, “full and equal members society.” Full and equal members of society should not have to face widespread poverty because of inadequate systems of income support. They should not have significantly lower levels of education attainment and employment. In Ontario’s apology to former residents of regional centres for people with developmental disabilities, Kathleen Wynne opened by saying, “One of a government’s foremost responsibilities is to care for its people, to make sure they are protected and safe.” In this we are failing one of our most vulnerable populations.
I chose to write about this issue, because it is one that few people are aware of, and even fewer understand. It concerns a group of people who, for the most part, cannot advocate for themselves. My older brother has autism. He is intelligent, capable, and kind. He is not a problem to be solved, a burden, or a mistake. He is someone I am proud to call my family not despite his disability, but because of his strength in light of it. I wish our wider society could see him and others like him the way I do. School services stopped for my brother at the age of 21, despite the fact that his education was not yet complete. My parents live and work on an adjusted schedule in order to meet his needs. I have no idea what my brother’s future will look like, what will happen when he ages out of his current program, when my parents grow old, if things become more complicated. I have no idea where we will turn or what we will do.
During the 2016 federal election campaign, a mother of a child with autism asked the now-Prime Minister to commit to a national autism strategy, and rather than do so he said,
“We recognize that education and health-care delivery are very much a responsibility for the province. But there is more that the federal government can and is going on the research side, on the advocacy side, and on the support side”
Research, advocacy and support are important, but in order to create meaningful change in the lives of those with developmental disabilities we need national standards. We need programs that co-ordinate education and health services both within and across provinces. We need to consider caregivers and how to support them in order to keep families together and prevent abandonment. We need to make it so that services are accessible to everyone of all socioeconomic backgrounds, especially within indigenous communities. We need to acknowledge that financial support is not the only kind of support and that accessible and affordable community programs are essential to create an inclusive society. Lastly, we need to acknowledge the diversity that exists within this community. These are people, and like everyone else they are varied and complex. Any effective system needs to reflect this diversity in order to truly serve all who depend upon it. I will close this essay with one of my brother’s favourite quotes: it is about not giving up on people who need you because, “after all a person’s a person. No matter how small.”