The SNA Public Policy Committee and SNA’s Public Policy Advisor and Lobbyist, Brian Lindberg, work with Members of Congress and congressional staff to educate and advocate on issues of importance to SNA’s members and clients.The public policy team targets its time and resources toward policies that affect our clients and practices, while promoting SNA’s relationships with key partners and the Hill.

Although issues change, the committee has recently been focused on five priority issues: Financial Security, including SSDI and ABLE; Long-Term Services and Supports, including Administration for Community Living (ACL) programs; Health, including Medicaid; Education, including IDEA; and Developmental Disabilities, Autism, and Family Support. SNA has also been active with the Consortium for Citizens with Disabilities (CCD) to push Congress to address the needs of individuals with disabilities during the pandemic.

In this section you will find some of SNA’s more recent or significant advocacy actions document.

SNA Legislative and Advocacy Highlights

SNA Public Policy tracks numerous bills in the US Congress that would benefit individuals with disabilities and their families. Here’s a quick summary of what we are currently following.
Legislative
Advocacy

SNA Activities on the Childhood Disability Benefit Fairness Act

SNA has been working with Congress to address an unintended flaw in current law which makes individuals with disabilities whose parents die young, are older and retire, or who fail to apply to SSI in time potentially subject to a Medicaid deductible. These faultless individuals may not be able to afford or receive Medicaid benefits as a result. SNA has drafted a legislative proposal to fix this problem and has been working with other members of the Consortium for Citizens with Disabilities to convince Congress to take action.

Documents

Are you aware that a child who does not receive Supplemental Security Income (SSI) before receiving Social Security on a parent’s Social Security record (call Adult Disabled Child Benefits) might face a lifetime of repercussions?  Read the Special Needs Alliance’s Issue Alert to understand the issue and how SNA is actively working to correct it.

One-Page Advocacy Tool for ‘Childhood Disability Benefit Fairness Act

2022-3-28 Letter of Support re Childhood Disability Fairness Act submitted to Senator Stabenow

SNA Testimony Submitted to the Senate Finance Committee on SSDI and the Childhood Disability Benefit Fairness Act

SNA Partner and DC Links

  • Consortium for Citizens with Disabilities
  • Consumer Voice
  • National Governors Association
  • National Conference of State Legislatures
  • National Academy for State Health Policy
  • And More

SNA Legislative and Advocacy Highlights

SNA Public Policy tracks numerous bills in the US Congress that would benefit individuals with disabilities and their families. Here’s a quick summary of what we are currently following.
Legislative
Advocacy

SNA Supports Omitting Food from Social Security In-Kind Support and Maintenance Calculations

Read the April 17, 2023 letter from SNA and the Alliance of Pooled Trusts supporting the SSA’s proposal to omit food from in-kind and support maintenance (ISM) calculations.

SNA Special Needs Trust Improvement Act Becomes Law

The Special Needs Trust Improvement Act (S.4426/HR 8625) is the SNA developed legislation that allows a charitable organization to be named as a remainder beneficiary of a trust that is established for a person who has a disability or is chronically ill.  This legislation was included in both the EARN Act and as part of the Secure 2.0 Act of 2022 and passed in the Consolidated Omnibus Appropriations Act of 2023 Public Law 117-328 (Section 337 on page 915) . It was signed into law by President Biden on December 29, 2022.

Documents

Special Needs Alliance Announces Passing of the Special Needs Trust Improvement Act of 2022
SNT Improvement Act 2023 -FINAL

Special Needs Trust Improvement Act of 2022 – SNA Legislative Alert June 2022

Senators Young and Hassan Press Release on the Special Needs Trust Improvement Act of 2022, Introduced at the Request of SNA

Special Needs Trust Improvement Act of 2022

SNA comments on Proposed SECURE Act Regulations

The Special Needs Trust SECURE Act of 2021 Alert

SNA Letter to Treasury Department on SECURE-May 29, 2020

SNA Activities on the Childhood Disability Benefit Fairness Act

SNA has been working with Congress to address an unintended flaw in current law which makes individuals with disabilities whose parents die young, are older and retire, or who fail to apply to SSI in time potentially subject to a Medicaid deductible. These faultless individuals may not be able to afford or receive Medicaid benefits as a result. SNA has drafted a legislative proposal to fix this problem and has been working with other members of the Consortium for Citizens with Disabilities to convince Congress to take action.

Documents

Are you aware that a child who does not receive Supplemental Security Income (SSI) before receiving Social Security on a parent’s Social Security record (call Adult Disabled Child Benefits) might face a lifetime of repercussions?  Read the Special Needs Alliance’s Issue Alert to understand the issue and how SNA is actively working to correct it.

One-Page Advocacy Tool for ‘Childhood Disability Benefit Fairness Act

2022-3-28 Letter of Support re Childhood Disability Fairness Act submitted to Senator Stabenow

SNA Testimony Submitted to the Senate Finance Committee on SSDI and the Childhood Disability Benefit Fairness Act

SNA Support Letter for Senators Collins and Casey Guardianship Bill – February 27, 2019

As the President of the Special Need Alliance, I write to share our strong support for your work on guardianship issues and specifically your legislative initiative entitled the “Guardianship Accountability Act.”

SNA Press Release on Richard Courtney Energy and Commerce Committee Testimony

September 18, 2015 (Washington, DC) – Just more than a week after the U.S. Senate passed by unanimous consent the Special Needs Trust Fairness Act, Richard (Rick) A. Courtney, CELA, CAP, appeared before the U.S. House Energy and Commerce Committee Subcommittee on Health to testify…

Richard Courtney Testimony on Special Needs Trust Fairness Act September 18, 2015

Good morning. Chairman Pitts, Ranking Member Green, and members of the subcommittee, I congratulate you on holding this hearing to examine ways that the Medicaid program can be strengthened to better serve its beneficiaries.

SNA ABLE Comment Letter to the Internal Revenue Service-September 21, 2015

As the President of the Special Needs Alliance (SNA), I am writing in response to the Notice of Proposed Ruling Making (NPRM) with respect to the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act, codified in part at 26 U.S.C. § 529A.

SNA Comments in Opposition to the Department of Veterans Affairs Pension Regulations

As the President of the Special Needs Alliance (SNA), I am writing in response to the Department of Veterans Affairs’ proposal to amend its regulations governing entitlement to VA pension.

Summary of VA Changes to 38 CFR Part 3 – By Robert L. McClelland, JD, LLM, CELA

Among other things, our Special Needs Alliance is focused on the estate planning objectives to protect public benefits eligibility for clients affected by disability as defined in applicable statutes, regulations, policies and agency interpretations.

SNA Partner and DC Links

  • Consortium for Citizens with Disabilities
  • Consumer Voice
  • National Governors Association
  • National Conference of State Legislatures
  • National Academy for State Health Policy
  • And More

Past SNA Advocacy Activities