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What the ADA Means to Our Family

Co-Authored by Alison Nodvin Barkoff, Director of Advocacy at the Center for Public Representation and Evan Nodvin, Member of the Georgia Council on Developmental Disabilities

July 26th is the 28th anniversary of the Americans with Disabilities Act (ADA), a civil rights law aimed at bringing people with disabilities from the shadows to fully participate in society.  This anniversary provides an opportunity to think about where we’ve been and how far we still have to go.

When my brother, Evan, was born with Down syndrome almost 40 years ago and a decade before the ADA, expectations for people with disabilities were abysmally low. Doctors said that Evan would never learn, hold a job, or participate in activities with peers and that the best option for him was an institution. My parents refused to listen and instead tirelessly advocated to create a rival image for his life. They fought to give Evan the same opportunities my sisters and I had: to participate fully in school, be a valued member of our community, and pursue fulfilling employment. Most importantly, they taught each of us to advocate for what we wanted and had the same high expectations for all of us.

Evan, like others with disabilities, often experienced discrimination based on misinformation and stereotypes. That was why we fought so hard for the ADA, a game changer in the lives of those with disabilities and their families. This civil rights law makes discrimination based on disability illegal and assures equality of opportunity, full participation and economic self-sufficiency.

Evan recently spoke about his life before a large audience at a national conference in Washington, D.C. in a speech titled “My Life and Dreams”:

I want to tell you about my life in my community and how important it is to me to be an independent man.

I graduated from Chamblee High School in the class of 2000. I was in the marching band and got to play and march at all the football games. I made a lot of friends.

Transitioning from child to adult services is very difficult. My family and I had to fight hard for what I wanted – to get a job and live independently. But laws like the ADA and Olmstead help people like me get the services I need to be successful and reach my goals.

After graduation, I started working at the Marcus Jewish Community Center of Atlanta. I have worked there for 18 years in different jobs. I now work in the Health Club. I check the clients in on the computer. I make sure the equipment is in good working order and collect used towels and fold the clean ones. Most of all, I love to talk to the many people who come to the health club. I know all their names, love greeting them, and enjoy joking with so many people.

My co-workers have become some of my best friends. They help me when I need some extra help. We eat lunch together and sometimes go out together on the weekends. I have even been the best man at my co-worker’s wedding!

I live in an apartment with a friend I chose as a roommate. I do all the things a single man does like grocery shopping, cooking and cleaning the apartment, paying my bills and managing my checkbook.

I am able to be an independent man because I get help from my Medicaid Waiver. My Medicaid Waiver provides me with needed transportation, a terrific job coach, and a personal consultant that helps me with independent living skills. I continue to learn new things that make me so proud. I receive SSDI and that, along with my paycheck and Medicaid Waiver, allow me to be independent.

I enjoy music, playing computer games, playing sports, exercising with a trainer, and hanging out with my friends. I have a girlfriend and like going out with her. I also enjoy acting and perform in a theater group.

Alison and Evan with Senator Tom HarkinI am proud to be a member of the Georgia Council on Developmental Disabilities. I attend Council meetings and get to present at national conferences. I learned how to be a self-advocate from a program called Partners in Policy Making. I have met with my elected representatives in Washington, D.C. and in Georgia. I like to follow the news and vote in every election.

My parents and sisters are happy to see me living my dreams. They tell me that these are their dreams, too.

As you can see, my life is very full. I work, live, and play in the community. My dream is to continue this healthy and useful life.

The ADA has helped make Evan’s life a reality. But we still have far to go before the ADA’s promise of community inclusion and economic independence are a reality for all people with disabilities. Thousands of people with disabilities who want to live in the community are stuck in institutions. Over 500,000 people are on waitlists for the community services they need to live meaningful lives. Most people with disabilities want to work, but less than 20 percent have a job.  We can and must, do better. That’s why the Center for Public Representation and the Georgia Council on Developmental Disabilities are fighting so hard to expand opportunities for community living, competitive integrated employment, and inclusive education.

On this 28th anniversary of the ADA, we hope our family’s story reminds you of how far we have come and motivates you to keep advocating for progress. Look for a forthcoming article through the LEAD Center about how you can advocate for employment in your community.  Happy ADA anniversary!   

Bios:

Alison Barkoff is the Director of Advocacy at the Center for Public Representation.  She works on policy and litigation related to community integration and inclusion of people with disabilities, including Olmstead enforcement, Medicaid policy, employment, housing, and education.  She is a co-chair of the Long-Term Services and Supports Task Force of the Consortium of Citizens with Disabilities and served as an appointed member of the Federal Advisory Committee for Competitive Integrated Employment of People with Disabilities.  From 2010 to 2014, she served as Special Counsel for Olmstead Enforcement in the Civil Rights Division of the Department of Justice.  During her time with the federal government, Ms. Barkoff also worked with the Centers for Medicare & Medicaid Services and the Department of Labor on disability issues. She has previously worked at the Bazelon Center for Mental Health Law and at a number of other public interest organizations on disability litigation and policy.

Evan Nodvin is a proud member of the Georgia Council on Developmental Disabilities as one of seven Georgia self-advocates on the Council. Evan works at the Marcus Jewish Community Center of Atlanta as a Courtesy Assistant at the Health Club at the MJCCA. He is a graduate of Partners in Policy Making, a past Buddy of the Year for the Down Syndrome Association of Atlanta, a co-chair of the Special Friends Sabbath Inclusion Program at Congregation B'nai Torah in Atlanta and a gold medal Special Olympian in Power Lifting and Bocce Ball. He graduated Chamblee High School in the class of 2000. Evan belongs to several social groups and enjoys bowling, yoga, cooking classes, dances, tennis, kickball, acting through Habima Theater and biking. He lives in an apartment with a roommate of his choice and gets supports through his Medicaid Waiver. He takes pride in speaking to small and large audiences about employment and self-advocacy.

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