NDSC Senior Policy Advisor, Stephanie Smith Lee, Speaks in Trinidad and Tobago for World Down Syndrome Day Conference
NDSC Senior Policy Advisor, Stephanie Smith Lee, spoke in Trinidad and Tobago last week at the UN World Down Syndrome Day Conference. The conference is hosted in part by one of our NDAC Group members, Down Syndrome Family Network.
Stephanie spoke at the U.S. Embassy in Trinidad and Tobago on WDSD to Embassy staff, the media, and non-profit organizations about policy advocacy to create inclusive schools and the lessons learned in the US about how to create truly inclusive schools. As a featured speaker, she shared her knowledge of the lessons learned in the U.S. about inclusive education and the key role of family and self-advocates in creating positive change. Listen to one of her speeches HERE.
Employment Policy Update
NDSC continues to prioritize employment policy issues for people with Down syndrome and other disabilities. Much of NDSC’s work on employment policy is with the Collaboration to Promote Self-Determination (more info HERE), a coalition of national groups whose mission is to push for major systemic reform of the nation’s disability laws and programs to advance economic security, enhance integrated community participation, and increase opportunities for people with disabilities so that they are able to lead self-determined lives.
NDSC is proud to be one of the organizations leading the effort to pass the Transformation to Competitive Employment Act (H.R. 873/S.260). Recently introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation will address barriers to employment and expand opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period.
While other bills have sought to phase out Section 14(c), this bill is unique in that it also includes a systematic approach to expand capacity for competitive integrated employment, particularly for people transitioning out of sheltered workshops. The grants provided under this bill would provide technical assistance and funding to help states and 14(c) certificate holders move to a paradigm of more integrated and innovative approaches to disability employment.
The 116th Congress convened on January 3, 2019. The House of Representatives shifted from Republican to Democratic control, and there are over 100 new Members of Congress. We are optimistic that the change in control of the House, which has led to a divided government (as opposed to one party controlling the White House and both chambers of Congress), will present more proactive opportunities to implement NDSC’s policy agenda.
All bills that did not pass during the 115th Congress are finished. Some will be re-introduced and look similar, some will be changed significantly, while others may just be dropped entirely and not re-introduced. Cosponsors will need to be enlisted again, and new members and their staffs need to be educated on the issues salient to our community.
Texas Court Rules Affordable Care Act Unconstitutional
The National Down Syndrome Congress (NDSC) is very concerned by the recent ruling issued by a federal judge in Texas in the case Texas v. United States, which struck down the Affordable Care Act (ACA) as unconstitutional. The Texas court ruled that the ACA’s individual mandate is unconstitutional, and because the mandate cannot be separated from the rest of the law, the rest of the ACA is also invalid. (Legal wonks can read the actual opinion HERE; or a summary HERE)
In striking down the ACA, the Texas judge reasoned that in 2012, the Supreme Court upheld the coverage mandate because of the Congress’s power to tax. In the tax reform package passed by Congress last year known as the Tax Cuts and Jobs Act of 2017, the tax penalty for failing to comply with the individual mandate to maintain coverage was removed. As a result of this removal, the Texas court reasoned that the mandate is no longer a “tax” so the legal underpinning for the ACA has been eliminated. Even more controversial in his ruling was his determination that the mandate is “essential” to the rest of the law, so without the mandate, the entire law becomes invalid. This includes the provisions protecting coverage for people with pre-existing conditions and the ability for young people to stay on a parent’s health plan until age 26.
As a result of the midterm elections, the House of Representatives will shift from Republican to Democratic control in the 116th Congress, which will begin in January 2019. The Senate will remain under Republican control with an increased Republican majority. The party that has the majority of members in the House or Senate has substantial power to set the agenda, chair committees, and decide what bills will be considered for hearings and markups. The majority also has more members on each of the committees. The House has significant authority over appropriations and oversight of existing laws and regulations as well as oversight over the executive branch in general.
It is unknown exactly how this divided Congress will impact policy, but we believe that Congress will now be less likely to prevail in efforts to repeal the Affordable Care Act or to cut or significantly alter Medicaid. Continued ideological differences and partisanship could possibly lead to ongoing gridlock, but we are hopeful instead that the new balance of power will lead to more bipartisan action. For an analysis of changes we can expect in House and Senate committee leadership and their impact on policy, see this document prepared by our colleagues at The Autism Society, HERE.
Advocacy Needed: Help Us Get These Bills Passed in 2018!
The 115th Congress ends in December, and NDSC is working around the clock along with other disability groups to get several bills across the finish line. As explained below, the EMPOWER Care Act (S. 2227/H.R. 5306) and the ABLE Age Adjustment Act (S. 817/H.R. 1874) have the potential to positively impact many peoples’ lives, and their passage in this Congress is important to the sustainability of their programs. Bills that do not pass before the end of 2018 will need to be reintroduced in the next Congress, and the process of adding cosponsors, having committee hearings and trying to find a vehicle for passage starts all over again. We have updated NDSC Action Alerts on these issues. Please take a few moments to call and/or email your elected officials and ask them to support the EMPOWER Care Act and the ABLE Age Adjustment Act and pass them this session!
Heather Sachs, NDSC Policy Director, and Lauren Camp, NDSC Policy Associate, attended a Congressional Briefing last week hosted by the Global Down Syndrome Foundation at the Rayburn House Office Building in Washington, D.C. Activists, scientists, medical professionals, and legislators discussed the increased risk of leukemia and the decreased risk of solid tumor cancers for individuals with Down syndrome and the need for increased funding into this phenomenon. Thank you to Global for organizing this briefing and taking the lead on this important research.
Pictured: Heather, Lauren, Frank Stephens (self-advocate and Global ambassador) and Michelle Sie Whitten, Global DS Foundation President & CEO
Pictured: Dr. Espinosa, Michelle She Whitten, a clinical medical expert. (Photo Cred: Michael Campbell Photography)
NDSC Calls on Secretary DeVos to Issue New Guidance Regarding Postsecondary Education and Employment Funding for Students with ID
NDSC issued a press release calling on U.S. Department of Education Secretary Betsy DeVos to issue new guidance clarifying that federal special education and vocational rehabilitation funds may be used to support postsecondary students with intellectual disability (ID). The media statement was released in conjunction with a letter from 71 local, state, and national organizations requesting that Secretary DeVos issue this guidance. A comprehensive report, “Addressing the Policy Tangle: Students with Intellectual Disability and the Path to Postsecondary Education, Employment and Community Living” accompanied the letter. It outlines the legal and policy background of the issue and the need to meet the Congressional intent to encourage postsecondary education and competitive, integrated employment for individuals with ID.
LRP Publications published an article on this issue and other news outlets have expressed interest. Disability Scoop just published an article yesterday. NDSC is the lead organization in this effort and is pleased with the tremendous support from other organizations.
Please help us to pass the ABLE Age Adjustment Act (S. 817/HR 1874) this session of Congress! The ABLE Age Adjustment Act would amend Section 529A(e) of the Internal Revenue Code to increase the eligibility threshold for ABLE accounts for onset of disability from before age 26 to before age 46. This increase would result in millions of additional individuals with disabilities becoming eligible to open an ABLE account, which is an important savings tool to empower individuals with disabilities to achieve and maintain health, independence and quality of life.
Steve Sabia and Eli Lewis have been best friends for over a decade. In April 2016 they achieved their dream of moving into their own apartment. They live in a regular community apartment building with 500 residents, which offers all the amenities two young men could want. They call this place their “Bachelor Pad.” They have a low-income housing voucher to help them pay for the rent. The apartment building is very close to the metrorail and buses, which the guys use for work, recreation and sometimes for classes at the local community college. Steve and Eli both work in the mornings, but from 2pm until after dinner they have support staff, paid for by Medicaid, to help them with grocery shopping, cleaning, laundry and cooking dinner. They also have Medicaid-funded support staff on weekends to help them get to the activities in the community that are not accessible by public transportation.
Steve and Eli were interviewed about their journey, listen HERE. Steve said “My favorite thing is hanging out with Eli.” Eli said “My favorite part is eating dessert with Steve. My favorite thing in the apartment is the walk-in closet.” Steve said, his best advice to give other self-advocates living with a roommate is, “..to respect each other.”