Down Syndrome Awareness

October is Down Syndrome Awareness Month. So, let’s get that bit out of the way: Down syndrome is a thing, my oldest child has it, so…be aware.

This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m craving something more this year. The internet links families and individuals with Ds in very powerful ways, and as I’ve said on this blog in the past, it’s time to harness that voice and move past the awareness script our community seems to be stuck repeating.

People are aware that Down syndrome exists. Many people are aware that those with Down syndrome are human beings worthy of respect. (Unfortunately, I can’t say all people are aware of that pretty basic truth.)

But are they aware of the following?

• The unemployment rate for people with disabilities is nearly twice the rate for the typical population. Note that this figure only includes individuals who were working in the community and subsequently lost their job.
• The overall percentage of individuals with disabilities (age 16-64) who work is only 26.8 percent. We can do better. We must do better. Want your own kid to work in the community some day? That groundwork is laid today.
• The Individuals with Disabilities Education Act (IDEA), the federal law that ensures children with special education needs receive an education, is currently funded at only 14.9 percent. (40% is considered “fully funded” in terms of federal contribution.) Many states also do not fully fund their own portion, leaving districts to scramble to find the funds to appropriately serve students and ensure everyone receives an education.
• Over 30,000 individuals with disabilities still live in state-run institutions. (This statistic does not include smaller-scale group homes.) Only 11 states have closed all of their institutions, despite de-institutionalization efforts spanning nearly 40 years.
• 450,000 people work in sheltered workshops. (You read that right – that’s nearly half a million.) I do not advocate for the immediate closure of all workshops, but I do advocate for employment or community involvement of an individual’s choice – something that is often not possible when a workshop refuses to fulfill its reason for being: to help people with disabilities find meaningful community engagement. (Contrary to popular belief, workshops were not originally intended to be places where nearly every worker that c0mes through their doors stay indefinitely to work for pennies an hour.) Vermont hasn’t had a sheltered workshop in over 10 years. Read more about what’s happening there.
• Despite Down syndrome being the most common chromosomal abnormality, money allotted for research into the extra chromosome’s effects is an absolute pittance. It is the least funded genetic condition.
• Voter ID laws across the country place an undue burden on individuals with disabilities who wish to vote. Even voting itself can involve many barriers, such as transportation to and from their polling place or navigating the ballot itself.
• There is currently no federal law protecting all students from dangerous seclusion and restraint practices. Some states have enacted their own laws, but student safety should not depend on where they live. School safety should be a right. (There is a proposed bill sitting in Congress right now called the Keeping All Students Safe Act. Click here to read more.)
• Due to restrictions in the Social Security and Medicaid programs, many people with disabilities live in poverty. The allowable asset limit has not been changed in 25 years. The ABLE Act, designed to allow people to save for disability-related expenses and still access critical services like Medicaid, is poised to pass this fall. Read more about the bill and action you can take here. But beyond the ABLE Act, our system needs an incredible overhaul. The ABLE Act is a bandaid on a much bigger problem: that we expect so little from those with disabilities, that we care so little for their physical, mental, and emotional well-being that we have allowed decades to go by without changing a thing. Without creating a system that is nimble and agile enough to meet needs while allowing for self-determined lives. It’s time for major systems change.

I could go on, but I’m certain my point is clear.

This month, while we share our pictures and anecdotes and facts, let’s also raise awareness for these important issues. These kinds of institutionalized ableism do more every day to deny our children a future of their choosing than any misunderstanding of Down syndrome itself.  We can make crucial systems change if we work together.