Policy & Advocacy Newsline ~ July 26, 2018

ABLE Age Adjustment Act

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.

Not only is passing the ABLE Age Adjustment Act important from an equity perspective, but recent data from the National Association of State Treasurers (NAST) shows that passage of the ABLE Age Adjustment Act is critical for the sustainability of some ABLE programs nationwide. Enrollment across ABLE programs is lower than anticipated, and passing the ABLE Age bill would greatly expand the pool of potential ABLE account holders. See the NAST Sustainability Report HERE.

NDSC, along with nearly 160 other groups, has signed onto a letter of support for passage of the ABLE Age Adjustment Act (click HERE to view) and has issued Action Alerts to call your congressional members to cosponsor this bill.

Our most recent Action Alert, “Celebrate the 28th Anniversary of the ADA by Helping to Pass the ABLE Age Adjustment Act,” encourages advocates to honor the 28th anniversary of the enactment of the Americans with Disabilities Act (ADA) by calling on their legislators to support this bill. We encourage you to take a few minutes to make calls or send emails today. Click HERE for talking points and an easy email template you can use. Thank you for helping us to advocate to #ExpandABLE and pass the #ABLEAgeAdjustment Act.

Organizations Requested to Sign on to Letter to Secretary DeVos

NDSC and the Association of University Centers on Disabilities (AUCD) released a comprehensive report on problems in some states with using federal IDEA and vocational rehabilitation (VR) funding for postsecondary students with intellectual disabilities (ID). Local, state and national organizations are encouraged to sign on to the Inclusive Higher Education Committee (IHEC) letter to Education Secretary DeVos accompanying the report. Click HERE to read and sign on to the letter. The deadline for signing the letter is July 31, 2018.

The report, Addressing the Policy Tangle: Students with Intellectual Disability and the Path to Postsecondary Education, Employment and Community Living may be read HERE. It was prepared on behalf on the Inclusive Higher Education Committee. NDSC Senior Policy Advisor, Stephanie Smith Lee, is the Co-Chair of IHEC and the lead author of the report. Co-authors are Madeleine Will, Member of the NDSC Public Policy Advisory Council, and Denise Rozell, AUCD Director of Policy Innovation.

It outlines the legal and policy background of the issue and need to meet the Congressional intent to encourage postsecondary education and competitive, integrated employment for individuals with ID. The regulation preambles for both IDEA and WIOA clearly express this Congressional intent. However, more recent guidance, or interpretation of guidance, is leading to the denial of services in some states. Please join us in encouraging Secretary DeVos to issue new guidance clarifying that IDEA and VR funds may be used to support postsecondary students with ID.

Self Advocate Spotlight: Madison Essig, GMU ‘22

Madison, an NDSC Public Policy Advisory Council member, shared with us the following: 

“This summer, I have an internship on Capitol Hill in the office of Virginia Senator Tim Kaine. At the request of the National Down Syndrome Congress, I attended a Congressional Briefing in the Capitol Visitors Center on July 19, 2018 that addressed how the Supreme Court case Olmstead v. L.C and E.W (1999) has impacted public policy for services for people with disabilities. The briefing was part of an all-day symposium on the history and future of the Americans with Disabilities Act (ADA) and the Olmstead decision.

The briefing was sponsored by Senator Bob Casey of Pennsylvania and facilitated by Tia Nelis, Director of Policy & Advocacy for TASH. The panelists were:

  • Judy Gran, a partner at Reisman Carolla Gran LLP
  • Jenny Lengyel, a parent and executive director for Total Living Concept;
  • Tony Records, President of Tony Records & Associates, Inc.
  • Ross Ryan, the Plaintiff in Lane v. Brown
  • Anil Lewis, a board member of the National Federation of the Blind.

As explained in the briefing, the Olmstead case ruled that the ADA required that people with disabilities should have the right to receive services and supports in the “most integrated setting.” Up until 1999, state and federal policy allowed people with disabilities to be served with segregated supports or in segregated institution. Following the Olmstead decision, states and local governments were required by law to provide services and support that enabled people with disabilities to live and work in their communities. For example, Medicare and Medicaid issued a Home and Community Based Settings Rule, which requires services to be provided in integrated community settings and gives people with disabilities the right to have an important say in how their services and supports are provided.

In 2014, Congress passed, with bipartisan support, legislation called the Workforce Innovation and Opportunity Act, Public Law 113-128. This act recognized that barriers continued to exist for people with disabilities who want jobs in integrated settings with competitive pay.  The briefing touched on the use of 14(c) waivers to hire workers with disabilities and pay them less than the minimum wage (“subminimum wage.”) Paying people with disabilities a subminimum wage does not treat them equally and is not consistent with the Olmstead decision. The Lane case brought by Mr. Ryan was a class action that challenged sheltered workshops that pay subminimum wages to people with intellectual and developmental disabilities in segregated environments (HERE is more information about the Lane case).

The topics discussed during this briefing personally impact me because I am an intern in Senator Kaine’s office. I work alongside with my peers without disabilities. I have the same responsibilities and am treated in all respects like the other interns. I am also paid the same amount. If it were not for Olmstead and all of the work done over the years to ensure that people with disabilities have the opportunity to live and work in the community in the most integrated setting, I would not have had the opportunity to work in Senator Kaine’s office.”

Sean McElwee to Speak at State of the Art Conference — Early Bird Deadline is August 1

The State of the Art Conference planning committee confirmed today that Sean McElwee of Born This Way fame will be the keynote speaker. Deadline for Early Bird discounted registration for the State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities is August 1! Click HERE to register. Limited scholarships for family members are available on a first come basis.

The conference will be held in Syracuse, NY on October 10 & 11, 2018 and provides an excellent opportunity to network and learn from families and professionals in the field from across the country. Registration is also open for the parallel Student Leadership Conference.

TPSID Project Directors Hear from NDSC Expert

The annual meeting for the project directors and staff of the federally funded Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) projects was held July 16 & 17 in Albuquerque New Mexico. NDSC Senior Policy Advisor, Stephanie Smith Lee, spoke at the meeting about model accreditation standards and the status of the Higher Education Act reauthorization and its impact on students with intellectual disability.

Status of National IDEA Technical Assistance Centers

In May the U.S. Office of Special Education and Rehabilitative Services (OSERS) requested input on options for funding IDEA technical assistance to help states and districts with implementing the law. NDSC submitted comments to support keeping the funding for the national technical assistance centers, rather than cutting or eliminating funding to these centers and dividing it among the states. Our comments can be found HERE.  We also asked advocates to submit comments. As a result of all the comments received by OSERS, it was recently reported that they have decided to maintain funding for the national technical assistance center system. Thank you to everyone who submitted comments!

2018 IDEA State Performance Plan (SPP) and Annual Performance Report (SPR) Letters

The U.S Department of Education recently released its response letters to states’ SPP and APRs. These letters determine which states have met IDEA requirements and which need assistance or intervention based on 2016-17 school year data. You can find your state’s determination letters HERE.  A fact sheet listing the states that fall in each category is HERE.

Delay of Significant Disproportionality Regulations Compliance Date

On June 29, 2018  the U.S. Department of Education (Department) placed on public inspection in the Federal Register a final rule concerning the Department’s significant disproportionality regulations published December 19, 2016. With this publication, the Department postponed the compliance date for implementing the significant disproportionality regulations by two years, from July 1, 2018, to July 1, 2020. The Department has also postponed the date children ages 3 through 5 must be included in the analysis of significant disproportionality, from July 1, 2020, to July 1, 2022.

NDSC is very concerned about the Department’s decision to delay the compliance date for the significant disproportionality regulations. This decision was made even though the vast majority of the public comments submitted on the proposed regulation, including those submitted by NDSC, opposed the delay. This regulation was originally issued in 2016 to address the fact that too many students of color were being placed in special education, especially in certain categories of disability, and were also disproportionately subject to disciplinary actions and educated in more restrictive environments. You can read the NDSC comments HERE.

Recently, the Council of Parent Attorneys and Advocates (COPAA) filed a lawsuit in federal district court alleging that Secretary DeVos’ two-year delay of the rule violates the Administrative Procedure Act, the law that governs the regulatory actions of federal agencies. You can find COPAA’s complaint HERE.

Administration Proposal to Merge the U.S. Departments of Education and Labor

The Administration has proposed consolidating the U.S. Departments of Education and Labor as part of a broader plan to overhaul the government. This plan can be found at https://www.whitehouse.gov/wp-content/uploads/2018/06/Government-Reform-and-Reorg-Plan.pdf. One of many articles on the topic appeared in the Washington Post (read it HERE). NDSC has grave concerns about this plan and the impact it would have on the students with disabilities. However, such an action would require Congressional approval and it is our understanding from a variety of sources that such approval would be highly unlikely. An article describing how this proposal would impact the different offices of the U.S. Department of Education can be found HERE.

Senate Career and Technical Education Act Bill

A bipartisan Career and Technical Education Act reauthorization bill was passed by the Senate this week and was also quickly passed by the House. While we have some concerns about the amount of state discretion in the bill, it is a major improvement over the original House version.  NDSC is particularly pleased to see new provisions that increase focus on students with disabilities as well as provisions regarding Universal Design for Learning (UDL) for training and professional development of teachers and other staff. We advocated for this language along with our coalition partners on the Consortium for Citizens with Disabilities and the National UDL Task force. We applaud the Democrats and Republicans on their bipartisan effort.

Endrew F Settlement

The family of Endrew F. has received a $1.3 million settlement from the school district after their case went all the way to the Supreme Court. The Supreme Court clearly held that the lower court had applied too low a standard for determining whether Endrew had received a free appropriate public education (FAPE). After the case was sent back to the lower court, the Supreme Court ruling was applied and this time the court decided the case in favor of Endrew.  Read more HERE.

ESSA State Plan Approval Update

Oklahoma, Utah and California have received federal of their state ESSA implementation plans, leaving Florida as the only state without an approved plan.

Convention Update, Dallas 2018

Advocacy Training Day

Our first Advocacy Training Day was a huge success with over 175 participants. We had a packed room full of eager advocates who are just beginning their policy journey. Lead by the NDSC Policy & Advocacy Team, Stephanie, Ricki and Heather, sessions included the following (all presentations are linked if available):

Thank you to Jawanda Mast, NDSC Advocacy Training Day Consultant, Founder of #321Advocate and disability advocate for all your hard work. In addition, we would like to thank Global Down Syndrome Foundation for their sponsorship of this event and Chris Masey of Coalition of Texans with Disabilities for their assistance in planning this event. Also, thank you to all the speakers who participated: TX State Rep. Victoria Neave (D-107th), TX State Rep. Linda Koop (R- 102nd) , Daniel Chaplin, Chris Newlon, Julie Gerhart- Rothholz, Christopher Bennett, Lauren Camp, Frank Stephens, and Michelle Whitten of Global.

Mark your calendars for the NDSC Annual Convention in Pittsburgh, PA; June 27 -30, 2019!

We also want to thank those of you who signed up to be members of the National Down Syndrome Advocacy Coalition (NDAC). We have at least doubled our membership! Please sign up if you have not done so already, click HERE.

Self-Advocate Toolkit 

During the Advocacy Training Day, Christopher Bennett presented and unveiled his Self-Advocate Toolkit that he created with the help of NDSC. He had been hard at work on this for months before the convention. The toolkit includes information on how a bill becomes a law, tips when meeting with legislators, ways to become involved, and much more. Each training participant received a hard copy. This toolkit contains valuable information for self-advocates or anyone interested in beginning advocacy. Click HERE to view an online version.

Thank you to the Bennett family for covering printing costs.

Policy Team Presentations, Events and Ask the Experts

Heather, Ricki and Stephanie of the NDSC Policy Team were busy presenting at several sessions throughout the weekend. A listing of their sessions is below. In addition, the team attended the Connections Reception on Thursday evening where they met with NDAC members and families interested in policy. It was a great chance to meet some new faces and catch up with those we knew!

  • What’s Happening in Washington DC and What You Can Do (Heather, Ricki and Stephanie)
  • Be an Informed Education Advocate: The Future Depends on It! (Ricki, Stephanie)
  • Tips for Preparing for College and Finding the Right Fit (Stephanie)
  • Workshop: Empowering Effective Grassroots Advocates: Uniting Our Voices for Change!  (Heather, Jawanda)

Throughout the weekend the Policy Team also held multiple “Ask the Experts” sessions within the exhibitor area. This was a chance for conference attendees to come up to meet the team and ask any policy or advocacy related questions. Thank you to everyone that stopped by!


On Friday evening, Susan Goodman received the Sig Pueschel NDSC Service Award (watch video HERE). In accepting the award, Susan emphasized “If I’m going to choose a hill to die on, it’s going to be fighting for people to live their lives working, living and enjoying life in the community.” Thank you, Susan, for your nearly two decades of service to NDSC. We are lucky to still have you on our NDSC Public Policy Council!

In addition, Christopher Bennett received the Christian Pueschel Memorial Citizen Award. This award honors self-advocates who have made strides to be role models in the Down syndrome community. His award received press attention, you can read the article HERE.

Congratulations to Susan & Christopher!

Medicaid Update: Work Requirements

More and more states are seeking waivers from the Center for Medicaid & Medicare Services (CMS) to tie Medicaid eligibility to work requirements. NDSC opposes these work requirements, as we believe that they will negatively impact some people with disabilities and their caregivers. While some individuals with disabilities, including Down syndrome, would be exempt if they are on Supplemental Security Income (SSI) or SSDI, others who are not receiving SSI could be subjected to the onerous and detailed work requirements (For explanation of how work requirements will harm some people with disabilities, see here: https://www.cbpp.org/research/health/how-medicaid-work-requirements-will-harm-people-with-disabilities-and-serious). We have signed onto a joint letter by the Collaboration to Promote Self-Determination (CPSD) and the Association Promoting Supported Employment (APSE) explaining this position (See HERE).

CMS has already approved requests by Kentucky, Indiana, New Hampshire and Arkansas to add work requirements as a condition of enrollment in Medicaid. At least eight other states have similar requests awaiting approval by CMS, and other states like Michigan are taking steps within their legislatures to push work requirements.

Kentucky Case

Kentucky’s work requirements were recently blocked by a federal judge in the court case Stewart v. Azar. In this case, the judge criticized the work requirements and ruled that they did not adequately consider the coverage losses that would affect Medicaid enrollees. In response to this ruling, Kentucky Governor Matt Bevin announced that his administration would cut dental, vision and transportation coverage for 460,000 Medicaid recipients. Health advocates asked CMS to reject these cuts, and CMS just announced that it would re-open a 30-day comment period on Kentucky’s plan. Facing intense public pressure from the cuts, Governor Bevin just reversed his cuts and will reinstate the enrollees’ coverage. We will be watching closely how CMS handles these work requirements going forward. After the 30-day comment period, an appeal of the decision could reinstate them and impact other states seeking work requirements. We encourage you to reach out to your Governor and state legislators to urge them NOT to make work requirements part of your state’s Medicaid waiver applications.

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