How Americans Can Come Together
By Sara Hart Weir
The ABLE Act, one of the most bipartisan bills ever passed, provides a roadmap for how to move forward today.
Six years after the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act was signed into law, it has improved the lives of more than 75,000 Americans with disabilities.
The ABLE Act allows families to create tax-free savings accounts for individuals with disabilities. Modeled after the state 529 program, it excludes funds from the $2,000 cap on assets that is a current requirement to remain eligible for Medicare, Medicaid, and other critical government support. The funds in the account can be used for essential expenses, including medical and dental care, education, community-based supports, employment training, assistive technology, housing, and transportation. To date, 43 states and the District of Columbia offer ABLE programs, and anyone with a disability (that occurs before the age of 26) can open an ABLE Account.
As the past president and C.E.O. of the National Down Syndrome Society (NDSS), I was proud to play a role in shepherding the ABLE Act through Congress and working with state treasurers and 529 administrators across the country to stand up their life-changing ABLE Programs. NDSS and many other disability organizations also dug deep for this landmark legislation. It passed due to the bipartisan leadership of many U.S. Senators and Representatives and the hard work of advocates and self-advocates who stepped up to make their voices heard on Capitol Hill.
The best ideas for policy transformation come from real Americans—not from Washington—and the ABLE Act journey is a powerful illustration of how advocates can speak out for change. Indeed, the concept for the ABLE Act began around a kitchen table, where several parent advocates from the Down Syndrome Association of Northern Virginia were discussing the inequities families faced when it came to saving money for their sons and daughters with Down syndrome.
Families with a child or adult with a disability, such as autism or Down syndrome, face enormous expenses and, depending on the disability diagnosis, may need life-long care and assistance. Autism Speaks, a nonprofit that addresses the needs of individuals with autism and families, estimates the cost to raise a child with autism or an intellectual disability at $1.4 to $2.4 million, versus an estimated $233,610 to raise a child to age 17, as reported by the U.S. Department of Agriculture.
People with physical and intellectual disabilities are eligible to receive federal and state aid for healthcare, special education, as well as occupational and physical therapies to help them live full lives. However, families and caregivers could not access these benefits if they had more than $2,000 in assets at any given time until the ABLE Act’s passage in late 2014. This amount has not been increased to account for inflation in more than 50 years.
Building a Bipartisan Coalition
The ABLE Act took approximately eight years and four Congresses until it successfully reached President Obama’s desk, and in large part reached this monumental legislative hurdle because of the groundswell of support gained from Republicans and Democrats on Capitol Hill. Today, it might be hard to imagine a piece of legislation with cosponsors ranging from Representative Jim Jordan (R-OH) to Senator Bernie Sanders (I-VT) and everyone in between. Ultimately, the bill garnered the support of 381 U.S. Representatives and 78 U.S. Senators. It was likely the first, and last time, both Senators Harry Reid and Mitch McConnell agreed to cosponsor and announce their support for any piece of legislation—on the same day.
Is it even possible to replicate such a scenario in today’s politically polarized environment, to pass useful and essential legislation? Yes, it is. But how?
When we created the roadmap to get this legislation through, we were realistic about what we needed, the legislative price tag, and the political reality to push the bill across the finish line. But, most importantly, we demonstrated the passion and need for the ABLE Act through the voices of people with disabilities, their families, and caregivers.
We told the stories of how Americans would be affected by the life-changing legislation, using their words and actions to sway hearts and minds. Sara Wolff of Moscow, PA, showed people what was possible. Sara, who has Down syndrome, worked as a law clerk in nearby Scranton and was a powerful proof point of what people with disabilities could achieve, with a little help.
And we also reverted to old-fashioned politicking. We understood that those on the right, and those on the left, shared the same values of wanting to improve the lives of individuals with disabilities and their families. It’s easy to believe that political polarization infects areas of our lives where it doesn’t. We need to give people who we disagree with on some issues the benefit of the doubt on others. We need to assume people are decent and will want to do the right thing.
Just like the ABLE Act, there are hundreds, if not thousands, of issues that we can come together and solve. We can de-escalate issues with creative thinking that removes points of conflict, so long as the end result is the same or similar. All it takes is working and talking together.
Sara Hart Weir is the former President & C.E.O. of the National Down Syndrome Society (NDSS), and most recently a candidate for US Congress in Kansas’ Third Congressional district. She is a member of Engage’s Steering Committee.
Weir believes that people with disabilities deserve access to careers, not just jobs. She established the first-ever national employment program for the Down syndrome community, the #DSWORKS® Program, which partnered with companies from Main Street to Wall Street to create career opportunities for people with disabilities. She also co-founded The U.S. Future of Work For People with Disabilities Commission” – Tapping People with Disabilities who are Ready, Willing and ABLE to Work with fellow CEOs from Voya Financial and SHRM and worked on the landmark ABLE Act.
Weir has a Bachelor of Arts in Psychology and Political Leadership from Westminster College and a Master of Science in Public Policy and Management from Carnegie Mellon University’s Heinz College.
More information on ABLE Accounts
The ABLE Act amended the U.S. tax code to establish Section 529A “ABLE” Accounts, which allow people with disabilities to save money above resource limits (generally a $2,000 asset cap) and invest in their future without jeopardizing their eligibility for many means-tested public benefit programs, such as Medicaid, Social Security, HUD, and other benefits. For the first time, individuals with disabilities can accumulate assets and wealth as account holders. These accounts empower people with disabilities to work and live more independent lives.
Adults with disabilities may open and manage their own ABLE account; and minors and adults who need assistance to manage their accounts can have an authorized representative open and manage their ABLE; and parents of minors, legal guardians, custodians, or someone with power of attorney may manage an ABLE account on behalf of someone else. Currently, an ABLE Account may receive $15,000 total in a calendar year from all sources (i.e., the account owner, friends, family, and nonprofits). The $15,000 contribution limit is subject to the federal gift tax exclusion. Moreover, in 2017, Congress passed the ABLE to Work Act which allows working adults with a disability “account owners” may save up to an additional amount equal to the total of their wages, or the poverty limit whichever is less, as long as they are not participating in a retirement plan through their job.
ABLE accounts can be used to pay for expenses that improve the health, independence and quality of life of the account owner, including:
- Health, prevention and wellness
- Housing and other basic living expenses
- Assistive technology
- Personal support services
- Employment training and support
- Financial, administrative, legal fees
You can open an ABLE Account online in the state you live in or through any state who offers a national program. You can learn more by visiting the National Association of State Treasurers’ website.