December 11, 2018
Centers for Medicare and Medicaid Services
7500 Security Blvd.
Baltimore, MD 21244
Dear Commissioner Verma,
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.
In September of 2017, CMS issued guidance on ABLE that directed state Medicaid directors to disregard the assets in an ABLE account for purposes of determining initial or continued eligibility for Medicaid. The letter also advised that qualified distributions from an ABLE account were not to be considered income. At the meeting in October, there was general consensus that this guidance was extremely helpful, but that due to a lack of volume in instances in which the guidance was relied upon by SSA field offices, nationwide ABLE program coordinators continue to report that the default actions of SSA field representatives often continues to be in error – to disqualify applicants on the basis of ABLE resources. Additionally, participants in the October meeting urged CMS to strive to communicate with ABLE-eligible Medicaid recipients regarding the benefits of ABLE in the course of their interactions with social security applicants. Finally, meeting participants identified that permissive estate recovery provisions may pose a significant concern for families considering setting up or contributing to an ABLE account for a disabled individual. NCD looks forward to discussing each of these barriers and opportunities with CMS in an upcoming meeting.
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 email@example.com, as soon as possible to schedule a meeting for December or January with NCD. Thank you in advance.
 H.R. Rep No. 115-862 (2018)
 See National Council on Disability, National Disability Policy: A Progress Report - October 2017