When my cousin Joanne was born in1951, her parents were told her life would be short. Back then, the estimated life expectancy for a child with Downs was 12 years; Joanne passed away at age 14. In the 1950s her life expectancy wasn’t the only limiting factor; public schools could simply prevent a disabled child from attending. Joanne attended the local Catholic school instead.
My cousin Mark, born about ten years after, was screened at birth for health conditions associated with Downs Syndrome; but by the time he was school-age, he attended a regular public school and took bus like other children. After graduating from high school, he went on to receive community based employment services; but the resources available to Mark and his family were very limited. In his late 40s Mark was diagnosed with Alzheimer’s, and passed away shortly after.
While the risks of Alzheimer’s are still here, someone born today with Downs syndrome is expected to have a long life— 60 years and often more. Children will have the opportunity to attend regular public school; and are more likely to know their post- graduation options. This new generation uses iPads to help them keep track of their day; software like AVAIL to help them complete tasks independently; and job coaches to help them succeed in their workplaces.
Although we have come a long way in cultivating resources and opportunities, throughout our country— many people with intellectual disabilities are still waiting to access those resources, opportunities, and supports. Families need to be able to count on help from their local schools, community services, and agencies; and those with Downs syndrome need the support of their families, churches, and other community groups.
When the next election comes up, check out the candidates; ask them if they have ideas on how to improve supports for people with disabilities and their families. October is Down Syndrome Awareness Month, as well as other important advocacy-related and awareness themed initiatives related to the IDD community.
This is where each of us can play a connecting role, we can all help. Look around your community; does your church or congregation welcome people with intellectual disabilities? Are those with disabilities equally engaged in events and activities your family participates in? Are their members with disabilities in your associations, clubs, groups, and on your teams?
If the answer to any of these questions is “no,” then it’s time start asking why not.