“It is important that we value the lives of individuals with Down syndrome and other disabilities no differently than others"
Paul Crowley is a father to a seventeen-year-old son with Down Syndrome and the Co-president of Greater Victoria Down Syndrome Society. Paul shares the importance of including people with intellectual disabilities in healthcare and his vision for future medical care.
"It frustrates [when doctors] ask questions
but don't give them enough time [for my son] to respond and just move on to the next thing. The truth is that as long as doctors are willing to give some time, they can answer the questions. Often, they need the time to process the information before responding." Paul wants doctors to actively
engage with their patients with Down syndrome instead of relying solely on parents or guardians to ask about their conditions.
Paul and his son Sean were grateful to meet the physician who continuously made human connections with Sean when he developed pneumonia at six. According to Paul, "the doctor there was very understanding of Sean's situation. He always directed questions to Sean and was focused on him, and that was certainly rewarding."
Hoping for the future change, Paul and the Greater Victoria Down Syndrome Society are teaching educational assistants and support workers about the importance of taking time to wait for a response.
Moreover, Paul and his group deliver presentations to the medical community and medical schools to raise awareness about the lack of support for those with Down syndrome. One change that Paul would like to see in healthcare is making more equitable decisions. More specifically, in situations such as organ transplant, a 65 years old healthy male would be prioritized over a 40 years old individual with Down syndrome. Paul pointed out that "there are instances where individuals with Down syndrome have basically been put to the back of the list because their lives have been deemed less worthy than somebody who's not disabled."
Also, there should be more assisting systems that ensure that everyone receives necessary treatments. People with Down syndrome are prone to develop Alzheimer's at the age of forty. However, by that time, their parents are likely not there to support them.
During the pandemic, Paul and his group had to work very hard to convince the province to get their vaccines earlier since individuals with Down syndrome are at higher risk of getting the most severe symptoms when infected by COVID-19. However, now that a booster is available, the Down syndrome community faces the same difficulties: "IslandHealth is telling us, no, you guys are at the back of the line again. Even though they're reaching their six month point since the last time they got their vaccination, they're going to have to wait until their age group comes up in another three months before they get their booster shots."
"It is important that we value the lives of individuals with Down syndrome and other disabilities no differently than others," says Paul. He tells us that the US has passed laws to protect people with Down syndrome, while in Canada, there are still many improvements to be made so that they are not "valued any less than any other Canadian.."
To help the Down syndrome community, some doctors have started an app "where an individual with Down syndrome and a family can enter information about their particular conditions. Based on all the information they've collected, [the app] will provide some guidelines for doctors to use when treating that patient" Similarly to this app, Paul hopes to see more measures or even policy changes that can help those with disabilities have better healthcare experiences.
Lack of funding for support for individuals with Down syndrome is a major issue. There is little help for needed services from the province and federal government.
The At Home Program is a platform that provides support from the Ministry of Child and Family Development. "Though it is a great program, it is challenging for families with Down syndrome to qualify" because the bar it sets for the level of disability is relatively high. As a result, very few families other than those with the most significant challenges can receive that funding.
"When you are supporting a child with a disability, having two working parents is difficult," said Paul. Sean is fortunate that one parent can stay home and support him with Paul's military pension. However, single parents or parents who do not have higher-paying jobs can struggle greatly. Also, not all children can receive adequate care. However, "it is not the parent's fault a lot of the time." The chance of having a child with Down syndrome increases with older parents. As parents age, they have difficulties assisting a child.
"There are a lot of incidents of abandoned babies that get put up for adoption or get put into foster care. It can be very mentally challenging to raise a child with any special need, whether it's Down Syndrome, Spina Bifida, or any disability can be a challenge... [It's due to] not only the lack of funding in the medical community but also the lack of opportunities that allow individuals to be more functioning and more included in society just aren't there," says Paul.
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