Policy & Advocacy Newsline ~ April 23, 2019

Transformation to Competitive Employment Act

NDSC continues to advocate for the passage of the Transformation to Competitive Employment Act (H.R. 873/S.260) and we need YOUR help! 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. View a two-pager about this bill on the Collaboration to Promote Self-Determination website.

Why is passing this particular bill so important? Read a blog by disability employment policy expert David Mank to discover why. Passing the Transformation to Competitive Employment Act is one of our top priorities, but we can’t do it without your help! We are asking you to contact your Senators and Representatives and ask them to sign onto this bill as cosponsors. Go to Action Alert: Transformation to Competitive Employment Act.

Money Follows the Person

We are pleased to share that earlier this month, Congress passed the “Medicaid Services Investment and Accountability Act of 2019” (HR 1839), a bill to give the Money Follows the Person (MFP) program an extra $20 million dollars to extend its operations through the Fall, pending a longer-term agreement. The bill was signed into law on April 18, 2019. NDSC has been advocating for additional funding for MFP, a widely adopted and very successful Medicaid program that has helped more than 88,000 people with disabilities and seniors move from nursing homes and other institutions into the community, and has helped 44 states improve access to home and community-based services (HCBS). The success of the MFP program has been widely recognized and documented as effectively moving individuals from institutional to community-based care settings, reducing waiting lists for HCBS services, and saving states money. For more details, visit this link.

NDSC will continue to advocate for a longer extension and improvement of MFP through the EMPOWER Care Act (S. 548/ HR 1372) or another legislative vehicle. NDSC has signed onto a letter of support for the EMPOWER Care Act and recently pushed out an Action Alert for the EMPOWER Act. Please contact your Senators and Representatives and ask them to cosponsor the EMPOWER Care Act to reauthorize and improve MFP.

Medicaid Work Requirements

NDSC remains committed to protecting public benefits programs such as Medicaid upon which many people with Down syndrome and their families rely and will fight against cuts. At least thirty states have recently submitted proposals to the Center for Medicare & Medicaid Services (CMS) to cut Medicaid. View a snapshot of proposals to limit Medicaid in approximately thirty states.

Many of these proposals for cuts are in the form of work requirements. NDSC opposes Medicaid work requirements as we believe that they will negatively impact some people with disabilities and their caregivers. See our joint letter by the Collaboration to Promote Self-Determination (CPSD) and the Association Promoting Supported Employment (APSE) explaining this position.

In two of the states that have imposed work requirements in their Medicaid systems, Kentucky and Arkansas, health care and human rights advocates joined together and filed lawsuits challenging the legality of these restrictions. Earlier this month, these groups prevailed as a federal court for the District of Columbia struck down Medicaid work requirements in these states, which resulted in 18,000 people losing Medicaid coverage (view the court ruling).  There is a third lawsuit pending regarding New Hampshire’s Medicaid work requirement. Visit this link for more information about these lawsuits. NDSC is closely monitoring these cases and will report on any decisions.

Update on Texas v. United States Affordable Care Act Case

The future of the Affordable Care Act (“ACA”) and the health care for millions of people with pre-existing conditions hangs in the balance pending important court decisions on the ACA’s legality. In December 2018, a federal judge in Texas in the case Texas v. United States struck down the ACA as unconstitutional. The Texas court ruled that the ACA’s individual mandate is unconstitutional, and said that 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 by visiting this link); or a summary.

This lawsuit was brought in February 2018 by the states of Texas and Wisconsin (who has now asked to withdraw as a Plaintiff and is awaiting a decision from the Fifth Circuit). These states were joined by the states of Alabama, Arkansas, Arizona, Florida, Georgia, Indiana, Kansas, Louisiana, Maine (who later withdrew as a Plaintiff), Mississippi, Missouri, Nebraska, North Dakota, South Carolina, South Dakota, Tennessee, Utah, and West Virginia. In an unusual move, the US Department of Justice (DOJ) filed a statement of support for these states against the existing ACA law. Because the federal government refused to defend its own law, nearly twenty other states (led by California) have intervened in the lawsuit to defend the ACA. They argue that if Congress intended to repeal the entire law, it would have done so. Instead, Congress limited its repeal to the individual mandate tax provisions and the rest of the law should stand.

In January 2019, as expected, this ruling was appealed to the Fifth Circuit Court of Appeals. The DOJ recently took another usual step in sending a letter to the Fifth Circuit Court in which the DOJ said it fully agrees with the December 2018 lower court decision and is no longer asking the Court to reverse any part of the decision. The DOJ said is requesting that the entire ACA be struck down, including the provisions that protect pre-existing conditions (more information about the Fifth Circuit appeal).

NDSC is very concerned by the latest attack on the ACA by the DOJ and expects this case to go up to the Supreme Court.  We have recently signed onto an Amicus brief in this case, asking to overturn the district court’s ruling in this case. We will continue to keep you posted. NDSC is committed to working to preserve access to affordable health insurance for people with Down syndrome and their families.

Advocacy Training Boot Camp at the NDSC Convention

Thursday, June 27, 2019
8 AM – 12 PM

  • Designed to be an Advocacy 101 mini-course
  • Defining advocacy
  • Overview of basic government processes (state vs. federal, appropriations)
  • Discussion on how to effectively engage with legislators
  • Hear from panels of advocates (including self-advocates) will share their tips and experiences

Hear from NDAC members, Jawanda and Rachel Mast, as they explain more about the Boot Camp.

Free to Convention attendees!
NDSC Convention –June 27-30, 2019, in Pittsburgh, PA
Conference registration is now open, be sure to register!
 Register Here Button

Education Legislation Overview

NDSC is a member of a large disability coalition, Consortium for Citizens with Disabilities (CCD). One of the Task Forces focuses on education. This document provides a good overview of the key pieces of education legislation.

States Exceeding 1% Cap on Alternate Assessment Participation Without a Waiver

For the past year, NDSC has repeatedly asked the U.S. Department of Education to explain how it will address the fact that there are states exceeding the 1% cap on participation in alternate assessments under the Every Student Succeeds Act without being approved by the U.S. Department of Education for a waiver of this rule. One of the reasons this happens is that a state cannot get a waiver if it doesn’t assess at least 95% of its students with disabilities who should be assessed. At this time there is no public information at the Federal level about which states are exceeding the 1% cap without a waiver. Therefore, advocates would have to ask this question at the state level. On March 28, the Department finally sent a letter to the states with the following statement and list of consequences.

If a State did not receive a waiver for the 2017-18 school-year and assessed more than 1% of assessed students in reading/language arts, mathematics, and/or science, in the state with an alternate assessment, the state is out of compliance with the Every Student Succeeds Act (ESSA). Based on the state’s context and information, such as the extent to which the state exceeded the 1.0 percent cap, the Department will consider one of the following actions:

  1. Sending a letter notifying the state that it has assessed more than 1% of tested students with an alternate assessment and requiring the state to submit a plan to come into compliance with the 1% cap.
  2. Placing a condition on the state’s Title I Part A grant award. As part of the condition, a state would be required to submit a plan to assess no more than 1% of students with an alternate assessment in each subject.
  3. Imposing high-risk status on the state’s Title I Part A grant award. A state with such a high-risk status would be required to submit a plan to come into compliance with the 1% cap and to participate in joint Office of Elementary and Secondary Education (OESE)\/Office of Special Education Programs (OSEP) monitoring calls while the state works to meet the requirement.
  4. Withholding Title I Part A state administrative funds. If the Department withholds funds, a state would be required to submit a plan to come into compliance with the 1% cap and participate in joint OESE/OSEP monitoring calls while they work to come into compliance.

9th Circuit Inclusion Case

The Ninth Circuit Court of Appeals heard arguments on April 11 in a case (R.M. v. Gilbert Unified School District) centered on placement and the Least Restrictive Environment (LRE) for an elementary school student with Down syndrome. NDSC joined the Bazelon Center and other groups in submitting a brief to the Court in support of the family. In addition, Stephanie Smith Lee, an NDSC Senior Advisor, and Madeleine Will, a member of the NDSC Policy Advisory Council, also signed the brief in their capacities as former U.S. Department of Education officials. NDSC National Down Syndrome Advocacy Coalition (NDAC) member, Courtney Hansen, summarized the oral arguments in her Inclusion Evolution blog post.

School, Climate Resources from the U.S. Department of Education

The U.S. Department of Education recently released resources on improving school climate. The only reference to students with disabilities is related to Positive Behavioral Interventions and Supports (PBIS). PBIS is important, but not the sole concern. During our advocacy related to ESSA, NDSC strongly recommended that Least Restrictive Environment implementation in academic and extra-curricular settings should be considered an important component of school climate, but that is not reflected in these resources. There is also no policy reflected in these resources that would address disproportionate disciplinary actions for students of color and students with disabilities (except for a mention of a study on restorative practices to target disparities).

Bill to Fully Fund IDEA and Title I of ESSA

On April 11 Senator Chris Van Hollen (D-MD) and Representative Susie Lee (D-NV) introduced the Keep our Promise to America’s Children and Teachers (PACT) Act for the 116th Congress. The PACT Act would increase funding to Title I of ESSA and the Individuals with Disabilities Education Act (IDEA) incrementally over the next ten years and reach full funding by 2029. A similar bill has been introduced many times in the past. Read more about the bill. The bill has not yet been assigned Senate and House numbers for the 116th Congress nor has the text been posted. However, in 2018 Senator Van Hollen introduced the PACT Act as S. 3699 and the text of that bill.

Advocacy Training in Virginia

 Heather Sachs, NDSC Policy Director, and Lauren Camp, NDSC Policy Associate spoke with families from the Down Syndrome Association of Northern Virginia (an NDAC Group Member) in March for an informational roundtable. Participants learned about current and upcoming legislative actions supporting individuals with disabilities and how to take action to create change.

Pictured: Lauren Camp, Mary Ford (DSANV Executive Director), Heather Sachs

2019 State of the Art Conference Registration is Open!


NDSC is a proud sponsor of this conference and Stephanie Smith Lee, NDSC Senior Policy Advisor, is one of the conference organizers.

State of the Art is heading out West! Please join us in Reno for engaging breakout sessions, thought-provoking keynotes, important networking opportunities and more. One of the largest conferences in the field, State of the Art brings together stakeholders from inclusive programs across the country, as well as support organizations, policy makers, non-profits, students and families to discuss the latest research, challenges, best practices and goals in inclusive higher education for individuals with intellectual disabilities.

The primary conference will be held at the Silver Legacy Expo Center, and we’re bringing the SLC portion to the beautiful University of Nevada, Reno campus! There will still be opportunities for the conferences to be together.

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New for 2019: College Fair for Students with Intellectual and Developmental Disabilities on November 12! Join us on the eve of the conference for our first ever College Fair.

A Message from Global Down Syndrome Foundation, an NDAC Group Member

Global Down Syndrome Foundation (Global) thanks its 100+ Global Member Organizations
and the NDSC for supporting its leadership in increasing federal funding for Down syndrome research and medical care. Global is happy to report definitive success – the National Institutes of Health (NIH) Down Syndrome Research funding has made a historic increase from $35M in FY2017 to $58M in FY2018, AND with an anticipated $80M in FY2019! This success took nearly ten years of hard work, advocacy, and partnership with Congressional Champions including Reps. Cathy McMorris Rodgers and Cheri Bustos, Chairwoman Rosa DeLauro, Ranking Member Tom Cole, the entire LHHS and Education Appropriations Committee, Senator Roy Blunt, and many others. One of Global’s most convincing leaders is Global Ambassador Frank Stephens – and numerous self-advocates – who supported the hallmark congressional hearing arguing for increased funds that will surely increase lifespan and improve the quality of life for people with Down syndrome. Global is deeply grateful to Dr. Francis Collins, the director of the NIH and his key officers, Drs. Lawrence Tabak, Diana Bianchi, and Gary Gibbons, who have created a new funding mechanism for Down syndrome research and are dedicated to helping us in our mission.

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NDAC – Learn More & Join

The National Down Syndrome Advocacy Coalition (NDAC) is a grassroots advocacy service that is designed to educate individuals with Down syndrome, their family members and other allies about policy issues and give them the advocacy tools and techniques they need to effectively engage with their legislators to advocate for change.

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