top of page
Writer's pictureSteve Friedman

Empowering Dreams Through the ABLE Act

PART OF OUR RESOURCE 2024 SERIES: Expanding your options and your community


Featuring guest blogger, parent, advocate, Jawanda Mast.


Empowering Dreams Through the ABLE Act

My daughter Rachel was born just over 25 years ago, and with her arrival came the incredible joy of becoming a mother. We knew before her birth, through a prenatal diagnosis, that she would be born with Down syndrome. Almost immediately, however, we started hearing that Rachel could not have more than $2,000 in assets without risking the loss of government supports that she would likely need to live independently. To safeguard her future, we were told we would need to set up a special needs trust—a sometimes expensive and complex process. I remember thinking how ridiculous that all sounded.


Then came the ABLE Act

This year, we celebrate the 10th anniversary of the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act (Public Law 113-295). The ABLE Act is one of the most significant pieces of legislation for individuals with disabilities and their families in decades. ABLE accounts allow individuals with disabilities to open tax-advantaged savings accounts without jeopardizing federal benefits like Supplemental Security Income (SSI) and Medicaid. These accounts, similar to 529 college savings plans, enable families to save and invest for disability-related expenses, including housing, transportation, healthcare, and education.


Before the ABLE Act, individuals with disabilities were trapped by asset limits that had not changed since 1989 - the same year I got married. These limits, like the $2,000 asset limit cap for individuals and $3,000 for couples on SSI, force people with disabilities into a cycle of poverty, preventing them from saving or planning for the future. The ABLE Act offers an option for individuals to save, invest, and work toward greater financial independence without the fear of losing essential benefits.


The ABLE Act was born at a kitchen table in a Virginia suburb. Yes, a group of regular parents, some who worked on the Hill, others in ordinary jobs but the common theme was they each had a child with a disability. They were vocal about these asset limits and rules that basically relegate people with disabilities to live in poverty. I was not at that first table, but I got involved soon after. I met with our U.S. Senators, Representatives, and anyone else who would listen, sharing our personal story of how this legislation could empower Rachel and others like her. It became a priority for our family to advocate for the passage of the ABLE Act.


Self-Advocating for Dignity and Respect

Rachel started going with me to Washington DC and the home offices of our Congressional Delegation. A theme we focused on was dignity and respect. Wouldn’t you agree that Rachel should be able to work and save so that she could live her dreams just like other Americans? Her presence and voice made a powerful impact. It was on her first trip to Washington DC and in the office of Senator Jerry Moran that she proclaimed, “Senator Moran, you need to sponsor the ABLE Act because I want to live in a pink house!” That moment was unforgettable. Rachel’s pink house became a symbol—not just for her, but for many other individuals with disabilities who dream of independence.


We were not alone in our efforts. Advocates, families, and supporters from all over the country worked tirelessly to move the ABLE Act forward. Thanks to their dedication, the ABLE Act passed Congress with strong bipartisan support in 2014, and President Obama signed it into law on December 19th of that year. The law was named in honor of my friend, Steve Beck—a fellow parent and passionate advocate. Steve was there at that first kitchen table, leading the charge as a key volunteer. Sadly, he passed away before he could see the ABLE Act signed into law, but his legacy lives on in the impact it has made for countless individuals with disabilities.


After the federal bill passed, the work did not stop. States had to pass their own ABLE legislation, and advocates immediately began working on ABLE improvements such as the ABLE Age Adjustment Act which will raise the age for onset of disability from 26 to 46 allowing many more individuals with disabilities to benefit from ABLE Accounts.

In practical terms, how does ABLE help someone like Rachel? In January 2017, she opened the very first Kansas ABLE savings account. Since then, she has been able to save for her future without the fear of losing benefits. Each month, she has part of her paycheck directly drafted from her bank account to her ABLE Account. She has money she earns from her speaking engagements sent to her ABLE Account. In Kansas, where we live, there is a tax break for contributions to ABLE Accounts that we take advantage of. When she graduated high school, we invited friends to make gifts to her ABLE Account, and they did! If we did not have ABLE, she would have no real financial independence. She continues to dream—about her pink house, living on her own, and maybe even getting married one day. She is proud, and she should be.


ABLE Proves the Possible

ABLE has been a hard-won victory, but it is only one piece of a much larger puzzle. The benefits system remains complex and full of roadblocks, yet ABLE provides a crucial ray of hope—a tool that helps individuals with disabilities plan for their futures. Beyond offering a way to save, ABLE is an example of grassroots advocacy at its best. Ordinary people sharing personal stories, refusing to give up, and pushing persistently for change made all the difference. As our former Congressman Kevin Yoder once said, “Sometimes we can become cynical about the legislative process and the ability of real people to be heard in the halls of Congress. On this bipartisan vote, we ensured that Rachel’s voice—and millions of other families’ voices—were heard.”


As the Grassroots Advocacy Manager for the National Down Syndrome Congress, I continue to work with others to push for change, for laws that will help people like Rachel live the lives they choose. I am proud of the work we have done, and I am grateful for the advocates—those I know and those I do not—who helped make ABLE a reality.

On December 19th, the 10th anniversary of the ABLE Act, we will celebrate. I plan to take that day to celebrate and not think about all the other policies that need “fixed.” I will whisper a thank you to Steve Beck, to the countless advocates who made it possible, and most of all, to Rachel. She believed in the dream, and she made it real.


And the pink house? It is still in her future, and one day, I know she will be living there.


Learn more about how you can get engaged in advocating for policies important to individuals with Down syndrome at https://www.ndsccenter.org/political-advocacy/take-action-stay-informed/.

To learn more about ABLE Accounts, go to https://www.ablenrc.org/.

 

 

Guest BIO: Jawanda Barnett Mast

Twitter:@sassysutherngal

IG: thesassysoutherngal

 

 

Jawanda Mast is the NDSC Grassroots Advocacy Manager. She has been involved in disability policy advocacy since her daughter Rachel was born with Down syndrome almost 25 years ago. Jawanda has graduate and undergraduate degrees from the University of Arkansas and was honored with the 2017 Alumni Community Service Award for her body of advocacy work.  She and her daughter Rachel spent eight years advocating for the passage of the federal ABLE Act and have spoken around the country on ABLE, Advocacy, and Inclusion. Her daughter Rachel opened the first Kansas ABLE Account. She has provided written and oral testimony on a variety of federal and state policy issues and has served on many state-appointed committees.  Jawanda believes we all have a story and we can use those stories to impact change at all levels. She is passionate about the meaningful inclusion of individuals with Down syndrome and other intellectual disabilities in all aspects of the community and has presented at many conferences.  Jawanda says her work is a #laborofloveandconviction


Want to Learn More?

  • Check out our diverse blogs split out by age ranges

  • Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.

  • Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.

  • Got more questions? Join our FREE live virtual webinar in January or February. Find out more and register here!


 


The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!





The Essential Guide provides step-by-step support to:

  • Inspire mindset shifts toward one of independence and possibilities

  • Foster independence building blocks from the earliest age

  • Highlight health risks and financial resources every family must know

  • Detail education and work options to promote community inclusion

  • Evaluate family- and community-based home options including the search process

The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.

“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas

Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.


GET YOUR COPY HERE!




Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!


 

Get the latest on The Essential Guide, speaking engagements, and our blog articles and resources when you subscribe to our free website.


Sometimes this blog may get hidden amongst your Facebook posts or buried inside a Facebook Group. Don't miss any blogs filled with steps to help us all advocate for our adults with Down syndrome. Subscribe today!*



Get your

FREE

Letter of Intent Template

when you subscribe.


This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.


Get your free template today and give yourself the peace of mind you deserve.



"I appreciate and value your trust. I never share emails or send spam."

Comments


bottom of page