Sara Hart Weir, MS, is the President of the National Down Syndrome Society based in Washington, DC and New York, NY and is also the Co-Founder of the ABLE Alliance for Financial Empowerment

On March 21, the entire Down syndrome community will celebrate World Down Syndrome Day (WDSD). WDSD allows us to come together as a Down syndrome community to celebrate the accomplishments and milestones of individuals with Down syndrome. And while this is a day of celebration, it continues to be an important reminder of the critical advocacy that must happen in our country and around the globe.
On this WDSD, NDSS will be celebrating in many different ways:

One of my favorite parts of serving as the National Down Syndrome Society (NDSS) President is meeting with self-advocates, parents, affiliate leaders, professionals, family members and friends that make up our wonderful Down syndrome community. We all have the opportunity to make a difference in the life of one person - and all people, for that matter - with Down syndrome. At NDSS, we recognize that everyone has something to offer, advocate for, and contribute, which helps directly support our mission as the leading human rights organization for all individuals with Down syndrome.

NDSS was at the forefront of the passage of the landmark and historical Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, which helped to create tax-free savings accounts for people with Down syndrome and other disabilities. Today, this law is hailed as the most significant legislation for the disability community since the Americans with Disabilities Act over twenty-five years ago.

After the landmark passage of the ABLE Act in December 2014, we quickly shifted our advocacy efforts to the states. To date, we worked to enact 48 state ABLE laws (plus the District of Columbia), and we now have 18 states offering ABLE programs, including the incredible ENABLE Savings Program – and several more states are expected to come online this year. NDSS is pleased with the swift rollout of each ABLE program and has been an active partner across all ABLE programs in their efforts to launch.

As of December, according to Strategic Insight, more than 4,065 ABLE accounts were opened with investments of $14 million in assets deposited – all to fund a variety of essential expenses including medical and dental care, education, community based supports, employment training, assistive technology, housing and transportation for individuals with Down syndrome and other disabilities.

Eliminating the state residency requirement in December 2015 was essential to achieving our initial goal – to ensure all individuals with Down syndrome have access to ABLE accounts. Now that anyone with Down syndrome can open up an ABLE Account in any state, our fundamental focus continues to be providing the necessary education to individuals with Down syndrome and their families on how the ABLE program can be utilized and we continue to collaborate with like-minded organizations through our ABLE Alliance for Financial Empowerment.

ABLE continues to be a game-changer for the disability community. However, our work isn’t done. We continue to strive to make improvements to it in order to increase the amount of assets that can be put into ABLE accounts and increase the amount of people who are able to open these accounts. We are looking forward to working with our ABLE Congressional Champions to reintroduce the ABLE Improvement Package in the 115th Congress – the ABLE to Work Act which helps expand work opportunities for individuals with disabilities by allowing beneficiaries to save their paychecks into an ABLE Account up to $11,700 per year; the ABLE Financial Planning Act which would allow tax-free rollovers of amounts in qualified tuition programs (529 plans) to qualified ABLE programs; and the ABLE Age Adjustment Act to extend the age of the onset of a disability from 26 to 46 years old for ABLE Account eligibility. 

At NDSS, we want to encourage people with Down syndrome and their families to speak up, speak out and help us make the world a better place for people with Down syndrome. Our team is prepared to remain on the front lines to advance proactive policies and legislation, like the ABLE Act, to ensure that all people with Down syndrome have the same rights afforded to every other American.

This WDSD, NDSS invites you to join our mission and become part of this movement, which will redefine what having Down syndrome means for decades to come.