December 11, 2018
Alex M. Azar II
United States Department of Health and Human Services
330 C Street SW
Washington, DC 20416
Dear Secretary Azar,
I write on behalf of the National Council on Disability (NCD) -- an independent federal agency with the mission to advise the President, Congress and other federal agencies on disability policy issues – to thank you for sending a representative to participate in the October 5th roundtable discussion of federal agency responses to the Achieving a Better Life Experience Act (“ABLE”) Act and to request a follow-up meeting between our staff and your staff in the very near term.
The ABLE Act creates tax-free savings accounts for individuals with disabilities, funds in an ABLE account can be used to cover qualified expenses such as education, housing and transportation. These funds are meant to supplement benefits such as Medicaid, supplemental security income and other means-tested programs and therefore are not factored in as an “asset” for purposes of determining eligibility for such means-tested programs. Although ABLE Accounts have the potential to lift individuals out of poverty, participation in state ABLE programs has lagged behind expectations. Although there may be numerous reasons for this, anecdotally we know that some families have been given incorrect or confusing information about whether or not participation in ABLE could threaten their receipt of other critical federal benefits. This presents an opportunity for federal agencies to revisit their efforts to ensure that accurate information is disseminated to frontline staff and that they are making an effort not only to answer questions about ABLE in a meaningful, accurate and appropriate way but also, to the extent possible, that they are proactively getting information out to potentially eligible individuals and their families.
NCD was recently asked by Congress to serve, “…as an interagency coordinator with respect to the ABLE Act to ensure consistency across federal agencies and programs.”  This new charge stems from the fact that participation in state ABLE programs has, overall, been less than expected and this may be partly the result of inconsistent guidance provided to ABLE-eligible individuals and their families from federal agencies that administer needs-based assistance programs. We appreciate your agency’s commitment to working with us to improve the implementation of ABLE by federal agencies across the board and to encouraging people with disabilities and their families to avail themselves of this opportunity to save money to pay for disability-related expenses allowed under the ABLE Act.
During NCD’s ABLE meeting on October 5, all federal agencies in attendance discussed individual agency measures taken to clarify ABLE Act requirements to its stakeholders. ACL offered ideas including pairing ABLE Act talking points with its SHIP model for use by volunteers to educate stakeholders. In addition, ACL proposed that it could leverage its financial literacy efforts in the form of private-public partnerships with financial institutions; create website posts; and leverage its aging and disability networks to increase awareness and opportunity. NCD greatly appreciated ACL’s participation in the October 5 meeting and the many excellent ideas brought to bear during the discussions.
NCD conducts quarterly meetings across the country, and we will be holding information sessions regarding ABLE at each of these locations in the coming year. We will also gather feedback from stakeholders who have interacted with various federal agencies and bring information about their experiences back to you so that your agency can ensure that policies, procedures, guidance, and other activities pursued at the agency level can be calibrated and targeted to ensure that people with disabilities are able to benefit from this exciting opportunity to save money and avoid or lift themselves out of the long-term poverty that is the reality for far too many people with disabilities. We look forward to partnering with you in the coming year to make sure that ABLE can achieve the goals that Congress had in mind when they passed this groundbreaking legislation and meeting with you in the near term to discuss these opportunities.
Please have your staff respond to Phoebe Ball, NCD Legislative Affairs Specialist, at firstname.lastname@example.org, as soon as possible to schedule a meeting for December or January with NCD. Thank you in advance.