Down Syndrome isn’t an issue - law syndrome is

Imagine not being able to fulfill your dreams of a career, get married or even live an independent, productive life because antiquated laws discourage you from fulfilling your life’s potential. It’s not because you’re incapable. In fact, capability is the least of your worries. It’s because you’re an individual with Down syndrome or another disability.

The realization is that people with Down syndrome want to go to college, want careers, want to be taxpayers, want to get married and want to live full, meaningful lives. However, individuals with Down syndrome are disincentivized from pursuing meaningful careers because of the fear of losing access to life saving benefits like Medicaid.

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Today, the National Down Syndrome Society, the leading human rights organization for all individuals with Down syndrome, is bringing community leaders, self-advocates, parents and employers to Capitol Hill, to launch our latest advocacy campaign – Law Syndrome. This new national campaign affects 100 percent of people with Down syndrome. A series of out-of-date laws forces people with Down syndrome to choose between a job and independence or risk losing their critical Medicaid benefits – and we, at NDSS, are setting a platform to end #LawSyndrome with the assistance of several incredible congressional leaders.

The current system is marked by obsolete laws and discourages all people with Down syndrome from fulfilling their professional potential. NDSS is leading this historic national effort by showcasing to the world that Down syndrome doesn’t stop people with Down syndrome – it’s Law Syndrome that holds them back. The poverty rate for working-age people with disabilities is 22.3 percent higher than those without disabilities. Despite the efforts of key civil rights laws, including the Americans with Disabilities Act and the Stephen Beck Jr., Achieving a Better Life Experience Act, individuals with Down syndrome still face barriers to living as full, contributing members of their communities.

Law Syndrome doesn’t stop at a public awareness campaign – NDSS is teaming up with Congressional leaders like Rep. Cathy McMorris RodgersCathy McMorris RodgersThe Hill's Morning Report — Sponsored by Better Medicare Alliance — Dramatic battle looms after Kennedy’s retirement Immigration overhaul on life support in the House Vulnerable House GOP leader takes lead on family separations bill MORE (R-Wash.), a proud mother of her son Cole, who has Down syndrome; Rep. Pete Sessions (R-Texas), a proud father of his son, Alex, with Down syndrome who works at Home Depot; Assistant Democratic Leader Jim ClyburnJames (Jim) Enos ClyburnThe Hill's Morning Report — Sponsored by Better Medicare Alliance — Protests and anger: Washington in turmoil as elections near NYT editorial board: Time for some young Dem leaders Crowley stunner sets off new scramble among House Dems MORE (D-S.C.); Democratic Caucus Chairman Joe Crowley (D-N.Y.); and Rep. Gregg Harper (R-Miss.), a proud father of his son, Livingston, with Fragile X to roll up their sleeves and break down barriers that unjustly prevent people with Down syndrome and other disabilities from living the American dream.

In the coming days, these congressional leaders will announce and begin meeting on a new bipartisan effort to help the disability community tackle these archaic, outdated laws that continue to prevent individuals with disabilities from seeking out meaningful, competitive employment opportunities while maintaining and improving access to high quality benefits like Medicaid. By launching Law Syndrome, NDSS is calling our congressional leaders to join our fight to reform these complex laws—and help us change Law Syndrome.

NDSS’ Law Syndrome campaign will give all individuals with Down syndrome, their families, the larger disability community and the general public a voice in confronting these dated beliefs and provide a platform to encourage congressional leaders to act.

Employment is a basic human right. We must do all we can to challenge and change that which prevents any individual from reaching their full potential. To join us or learn more, I encourage you to visit www.LawSyndrome.org.

Sara Hart Weir, MS, is president and C.E.O. of the National Down Syndrome Society based in New York City and Washington, D.C.