World Down Syndrome Day is a Great Time To Highlight Competitive, Integrated Employment

/ March 21, 2023

By Jawanda Barnett Mast

Happy World Down Syndrome Day!

World Down Syndrome Day is a day recognized by the United Nations, organizations and many countries around the world. It is a day set aside to celebrate and create awareness for people with Down syndrome.  March 21 was selected because March, the third month of the year, symbolizes the three copies of the 21st chromosome and the 21st day represents that 21st chromosome. This is scientifically what causes Down syndrome. A person or their parents do nothing to cause the individual to have Down syndrome. The creation of the triple copy of the 21st chromosome happens at conception. Individuals with Down syndrome are not defective, afflicted or suffering. They are people just like you and me and created perfectly the way they are supposed to be. It is who they are!

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 across all mediums. People love these pictures of our loved ones with Down syndrome and comment on how “they are always so sweet and cute.”

On World Down Syndrome Day, you will see all types of fundraisers and events. You see crazy socks and mismatched socks, walks, runs, proclamations, random acts of kindness, dress up, dress down, Derby days, Get Down for Down Syndrome events, and much more. 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.

The heavy topic of the day for me is the issue of competitive, integrated employment for individuals with Down syndrome and intellectual disabilities. My daughter, Rachel, is 23 and has Down syndrome, so this is something that we’ve been preparing for and dealing with for a while.  Rachel has a good job that she loves at the University of Kansas Hospital. She gets paid holidays and paid vacation and other benefits not usually associated with a part-time job (24 hours per week). This is not the reality for the largest percentage of people with Down syndrome and other intellectual disabilities. The percentage of people with intellectual disabilities employed in competitive, integrated employment is abysmal. The Arc of the U.S. says nationally “80% – 90% of people with IDD of working age were unemployed in the years leading up to 2020.” Employers in some states can still be granted what are called 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. Tennessee, however, has passed legislation to eliminate this practice. Such employers were known as “sheltered workshops,” and the law allowing subminimum wages came about during the Franklin Roosevelt Administration in 1938. Not always, but in some cases, these employers have upper management pulling in six-figure salaries who often lobby hard against changes to these laws.

Employment is Important

Anecdotal data shows that employees with Down syndrome have a positive impact on co-workers and those around them. When appropriately trained and supported, they will do their job well. In general, they take pride in their work, are loyal, engaged, and enthusiastic. I’ve seen this with my daughter, Rachel. She LOVES telling people “I am patient greeter and transport patients at the hospital.” When you ask her why she loves her job, she says, “I love greeting people, and my smile makes people happy. Sometimes I see friends or people I know. I am part of the team.”  She will also tell you, “I love having my own spending money and putting money in my ABLE Account for my pink house.” Competitive, integrated employment and a sense of belonging are important to many individuals with Down syndrome and other disabilities.

There are many barriers to competitive employment and independent living, but one major barrier is the lack of safe, affordable, and dependable transportation. Our family lives in a suburb of Kansas City.  My daughter’s first job was at the Olive Garden, where she worked for three years.  The Olive Garden is a little over 10 minutes from our house, but a ride-share ride was about $17 each way. Restaurant workers often work until business slows down, so it may be two hours or eight hours, but usually it was closer to two. If Rachel paid that, there are many days she would have lost money working.

Complicated Rules are a Major Barrier

Another major barrier is the complicated rules and antiquated income and asset limits associated with programs such as Social Security Income, Social Security Disability Income, Medicaid, Medicaid Home and Community Based Services’ waivers, and others that people with disabilities depend on. The current asset limit to receive SSI is $2,000 ($3,000 for married couples, also known as the marriage penalty). This asset limit was set in 1989 when a gallon of milk cost $2.34. Today, that same gallon of milk costs $4.38. Many individuals and their families are fearful of them working too much and losing Medicaid health insurance or Medicaid HCBS waivers that help them to live, work, and function in their communities.

Clearly, I cannot cover all the issues of employment for individuals with Down syndrome in this blog post, nor is that my intent. But how do we go from awareness to change? We have made and are making progress. We will still post our beautiful pictures and host our events. That will always be necessary, but what can we do to move from awareness to change?

Since grass-roots advocacy is my spiel, I encourage you to get involved in advocacy.  In order to balance the scales, we must change federal and state policies. How can you do this? Join the National Down Syndrome Congress’ National Down Syndrome Advocacy Coalition. You will have educational opportunities and learn how to advocate. Sign up for advocacy action alerts through the National Down Syndrome Congress or other disability organizations such as The Arc.

Some other ideas to foster change:

• Join the inclusion, diversity, and equity committee where you are employed and encourage the committee to include people with intellectual disabilities in the discussion and be strategic in planning to employ those with intellectual disabilities.
• Encourage your employer to evaluate positions and places where people with disabilities can be an asset to your business.
• Support organizations that provide employment training and placement of individuals with Down syndrome and other intellectual disabilities through fundraisers, serve on boards, offer to assist with mock interviews, resume development, and job fairs, or serve on a committee.
• 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.
• Get to know someone with Down syndrome. You will likely learn that you have a lot in common.

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

For more information about competitive, integrated employment, see: Competitive Integrated Employment: Myths and Truths
———————————————————————
I appreciate the passion that Jawanda brings to issue of competitive integrated employment. And I am grateful for her work and her willingness to share her daughter’s experiences. I also love her ideas for ways to advance employment for people with disabilities. If you have questions, you can email me at janet.shouse@vumc.org. Happy World Down Syndrome Day!

 

Jawanda Mast is the grassroots advocacy manager for the National Down Syndrome Congress. Jawanda became involved in disability advocacy and leadership when her daughter, Rachel, was born with Down syndrome almost 24 years ago. Rachel was born in Memphis, where Jawanda became the first executive director of the Down Syndrome Association of Memphis and the Mid-South. She is a graduate of the 2005 Tennessee Partners in Policymaking program. The Mast family moved to Kansas in 2008 and still reside there.