SNA Goes to Washington

During SNA’s recent spring meeting in Washington, D.C., the focus was on public policy and advocacy. Members learned more about reaching out to their elected representatives, swarmed Congress for a “Day on the Hill,” honored Senator Richard “Tom” Harkin (D-Iowa) for his activism and heard from an array of “inside the Beltway” experts on the state of disability policy.

SNA recognized Senator Harkin’s long championing of disability issues—including introduction of the Americans with Disabilities Act and programs supporting community-based care—with its first Legislative Milestone Award. Andy Imparato, Disability Policy Director for the Senate HELP (Health, Education, Labor & Pensions) Committee, accepted the award on his behalf.

Messages for Congress

(From l.) U.S. Rep. Brad Schneider (IL, 10th District) with SNA members Ken Bloom, Brian Rubin and Benji Rubin.

The morning of the second day of the conference was devoted to learning more about reaching out to elected representatives from public policy experts and seasoned veterans who have worked Capitol Hill. Members were briefed on issues and given tips on how to approach elected representatives and their staffs.

In the afternoon, 45 members of SNA in conjunction with NAELA (National Academy of Elder Law Attorneys) visited Senate and House offices, airing concerns about special needs trusts (SNTs) and offering themselves as resources on disability and benefit issues.

They sought support for The Disabled Military Child Protection Act, which was proposed during the last Congress and which will hopefully be reintroduced this session by Rep. Jim Moran (D-Virginia). The legislation would enable veterans participating in the military’s Survivor Benefit Plan to transfer payouts to an SNT, rather than leave money directly to a child with disabilities. Non-military parents are able to assign retirement benefits to SNTs in order to protect an individual’s eligibility for means-tested government programs.

They also sought to correct an apparent drafting error in OBRA-93 (Omnibus Budget Reconciliation Act of 1993). That legislation, while enabling a person with disabilities to create a “pooled” special needs trust on their own behalf, neglected to grant a similar right to create a first party SNT. Under current law, only a parent, grandparent, guardian or the court may do so. Someone without a family member or guardian to handle this must go through the time-consuming and expensive process of petitioning the court. SNA and NAELA seek clarifying language to enable an individual with disabilities with the requisite cognitive capacity to establish a first party SNT on their own.

Program Focused on Government Services

(From l.) SNA members Richard Kroll and Amy O’Hara speak with a member of Sen. Kirsten Gillibrand’s (NY) staff.

Much of SNA’s spring conference was devoted to various perspectives on the government programs important to people with disabilities.

Mary Andrus, Easter Seals Assistant Vice President for Government Relations, spoke on the Affordable Care Act and the complexities of putting it in place. For the first time, health insurance will be available that covers habilitative services and devices, such as speech and occupational therapy for children with developmental disabilities. But she noted that the “essential services” to be offered by insurance policies sold on state exchanges beginning next year are still being defined. She acknowledged that supporters of healthcare reform are concerned about keeping it “alive and well,” given continued opposition and the targeting of funds needed for implementation.

Eric Ice, Acting Director, Office of SSI & Representative Payee Policy, explained that the Social Security Administration (SSA) is in transition. With an interim commissioner, many retirements and a three-year hiring freeze, there’s much uncertainty. Faced with an increasing workload due to aging baby boomers and the tepid economy, the agency’s resources are stretched. He stressed that SSA plans to assess trust policy and processes with “fresh eyes,” including the possibility of centralizing the highly trained staff needed to evaluate special needs trusts.

In recent months, SNA and other organizations have asked SSA to clarify the effects of various SNT disbursements on means testing for SSI. Ice confirmed that family caregivers can appropriately be paid with SNT funds if they are performing duties that would otherwise be provided by a third party. Third party travel expenses can also be covered by SNTs if they’re related to medical care for the person with disabilities or if the trip is for the purpose of checking on the safety or well-being of an individual in a supported living environment.

Andy Imparato (l.) accepts the Legislative Milestone Award from SNA President Pi-Yi Mayo on behalf of Sen. Tom Harkin.

Later the same day, former Social Security Commissioner Michael J. Astrue spoke of his six years steering the huge agency. When he began working for SSA, the organization was under attack for mounting disability backlogs, which he sought to address by eliminating paper recordkeeping and installing state-of-the art computer systems. A fast-track Quick Disability Determination process uses probabilistic modeling to identify cases with 95+ percent likelihood of approval, often rendering decisions in two weeks or less. SSA is also incorporating artificial intelligence into a national system that will cue examiners on rules, forms and required background information.

He deplored a building “media and legislative frenzy” that suggests SSA has loosened eligibility rules, making disability benefits available to people who do not deserve them. On the contrary, he reports, the number of individuals awarded benefits annually is “almost precisely the number projected 20 years ago,” with growth due, almost exclusively, to baby boomers entering their disability-prone years and greater participation of women in the workforce.

On the other hand, absent Congressional action, the Disability Trust Fund will face shortages in 2016. He insisted that there are many ways money could be saved without cutting entitlements. “We need a civil discussion concerning Title II funding of SSDI.”

Town Hall

On the last day of the conference, two speakers addressed accomplishments and remaining challenges under the Americans with Disabilities Act (ADA). Ari Ne’eman, from the National Council on Disability, cited the “sea change” from a medical approach to disability supports to social and civil rights protections and the growth of a service profession designed to enhance independence. This raises questions about how to replace institutional settings, and he labeled it a conflict of interest when service providers also own group homes. “Are they in real estate or are they service providers?” because filling both roles creates a barrier to firing someone for unsatisfactory care.

Former Social Security Commissioner Michael J. Astrue sharply criticized the media for inaccurately characterizing the granting of disability benefits.

Becky Shipp, a health policy advisor to the Senate Finance Committee, described her experiences working on Money Follows the Person (MFP) and the Family Opportunity Act, both designed to encourage states to provide home- and community-based services. At first, ironically, “no state took us up on it,” so advocates shifted their attention to convincing states to restructure their programs. MFP, she observed, should also act as “an incentive to getting shorter waiting lists.” As of 2012, 45 states had received grants under MFP.

The conference closed with an exploration of top policy considerations by Andrew Sperling, Director of Federal Legislative Advocacy for the National Alliance on Mental Illness; Andy Imparato, Disability Policy Director for the Senate HELP Committee; and Michael Morris, Executive Director of the National Disability Institute.

Among the issues cited were:

  • increased focus on community-based employment, based on the Olmstead decision;
  • how managed care will affect services for people with disabilities;
  • means testing for program eligibility that discourages employment and savings;
  • the need to improve community mental health systems;
  • increased emphasis on measuring the outcomes of government programs;
  • and tax reform’s effect on charitable contributions.

With a nod to Senator Harkin’s retirement plans, Morris declared, “We need to identify the next generation of congressional champions. We need bi-partisan support for our issues.”

Be on the lookout for more detailed coverage of SNA’s Capitol Hill visit and Town Hall guests in the next issue of “Capitol Connection.”