Down Syndrome Awareness Is Great, But...

Sunday, March 21 was World Down Syndrome Day. Through the years, the Down syndrome community has done all kinds of things to raise awareness of Down syndrome. You see beautiful pictures of people, often babies and children, with Down syndrome. People share them. People love these pictures of our loved ones with Down syndrome who are always so “sweet and cute.”

You see all types of fundraisers. You see crazy socks and mismatched socks (that one always makes me scratch my head.) There are all kinds of walks and runs and dress up, dress down, Derby days, Get Down for Down Syndrome events, and much more. Twenty-six years ago, the National Down Syndrome Society started the Buddy Walk, which in my opinion, is the single most impactful event ever for the Down syndrome community. I even wrote a blog about it – Buddy Walk: Game Changer for the Down Syndrome Community.

I think it is difficult for younger families to imagine, but there was a time when we did not have all this social media to stay in touch or the ability to readily access programs from others across the country. In addition to the Buddy Walk, we now have all kinds of Down syndrome walks. The original mission of the Buddy Walk was to promote positive public awareness of individuals with Down syndrome. A by-product has been the funds raised. You can impact change without money, but it is a lot easier when you have some money. I can attest to that from my days in Memphis working with the Down Syndrome Association of Memphis and the Mid-South.

All those cute pictures, awareness events, and fundraisers are needed and important. But there must be more. This is the more I want you to think about today.

Heavy on my heart is the issue of competitive, integrated employment* for individuals with Down syndrome and intellectual disabilities. This has hit me smack in the face the past few years as my daughter Rachel is now 21 years old. It has become a striking reality that full-time employment with benefits, which has always been our goal, is going to be really hard to attain. We have not given up, and I have been trying to write a blog about employment realities since January. I am just being honest and sharing some of our realities in our journey.

The percentage of people with intellectual disabilities employed in competitive, integrated employment is abysmal. The pandemic has made those numbers even more dire. The Arc of the U.S. says “80 – 90% of people with IDD of working age were unemployed in the years leading up to 2020.” Employers can still be granted 14C certificates from the federal government that allow them to pay people with disabilities pocket change for doing what we are required to pay others minimum wage to do. Not always, but in some cases, these employers have upper management pulling in six-figure salaries, and some lobby hard against changes to these laws.

Research shows that employees with Down syndrome have a positive impact on co-workers and those around them. When properly trained and supported, they will do their job well. In general, people with Down syndrome take pride in their work, are loyal, engaged, and enthusiastic. I have seen this up close and personal with my daughter Rachel. She loves telling people “I am a hostess at the Olive Garden.” When you ask her why, she says, “I love greeting people and seeing my friends. I love working with people I know and making friends with them. I love having my own spending money and putting money in my ABLE Account for my pink house.” Sounds like all of us, huh? Competitive, integrated employment is important.

There are many barriers to competitive employment and independent living, but in my opinion, one of the biggest is the lack of safe and affordable transportation. Think about it. Uber to and from Rachel’s job at the Olive Garden, a little over 10 minutes from my house, is about $17 each way. Restaurant workers often work until the decline of business. If Rachel paid that, there are many days she would lose money working.

I cannot hit on every piece of the puzzle in this blog, but I will say another significant barrier to employment is the education system. For the purposes of this discussion, I am not even addressing the transition to adult programming in schools. Dr. Erik Carter, Vanderbilt University Professor of Special Education, is one of the leading researchers in the area of transition to life after high school. He says, “Early segregation does not merely predict but almost ensures future segregation.” Despite the law saying so and research saying so, many, if not most, of our friends with Down syndrome are sent to segregated classrooms as the first option of placement. This is in direct violation of the LRE (Least Restrictive Environment) provision in IDEA (Individuals with Disabilities Education Act. Other families exhaust themselves or go broke fighting the system that still segregates people with Down syndrome as “best practice.”

By the way, if your school district thinks they are doing a great job because students with Down syndrome visit the regular classroom for specials or they allow them to be a manager for the dance team or allow them to be in the regular classroom until middle school and high school when “we don’t do it that way in high school and middle school” is the standard rule, they are not doing a great job. They are not following best practices or proven research. Enough said.

Now that I have all of that off my chest, where do we go from here? How do we go from awareness to change? We are headed there. We are making progress. We will still post our beautiful pictures and host our events. That will always be necessary. Today, I ask, what will you do, or can you do?

Will you:

• Be like my friend Sadye who reached out and said I have been thinking about Rachel and employment. Can we talk because I might have ideas?
• Be like my husband’s employer Sedgwick and employ people with Down syndrome and support organizations working on behalf of those with intellectual disabilities?
• Be like Rachel’s friends Hanna and Allie who have known and loved her for so long and who are troubled that she sometimes has fewer opportunities than they do? So much so that they went to Washington, D.C. and told Senators and Representatives why they need to change laws so people like Rachel will have the same opportunities.
• Be like our friends who have never sent a letter to or called an elected official but did because they have walked this journey with us, and they think Rachel is worth it.
• Be like my friend Tracy and call and say, “I think our office has a job that might be a perfect fit for someone with Down syndrome. Who should I call to try to make that happen?”
• Be like the manager at the Olive Garden who said to Rachel, “You’re hired! Everyone on our team needs support. I think our team will support you, too.”
• Think outside of the box about how you might be able to make a difference? Maybe that means offering transportation to a person with Down syndrome or another intellectual disability or serving on a committee to help change the community.

Or will you simply continue to say people with Down syndrome are so sweet and cute and like their images on social media?

I am closing with my latest favorite video “The Hiring Chain” from the Italian Down syndrome organization CoorDown. Down syndrome awareness is great, but what will you do to be part of the Change or Chain?

*As defined by WIOA (The Workforce Innovation and Opportunity Act)

• Competitive – Individuals with disabilities are paid the same as people without disabilities for doing the same or similar work. The law specifies that competitive pay cannot be less than minimum wage.
• Integrated – Individuals with disabilities have opportunities to interact with co-workers without disabilities in the workplace to the same extent as any other employee performing the same or similar work. The focus is on interacting with non-disabled co-workers, not with supervisors or disability support providers.
• Employment – Employment means full or part-time work, including self-employment.

For more information – Competitive Integrated Employment: Myths and Truths