Policy & Advocacy Newsline ~ November 2020

Newsline banner

Administration Transition
The presidential election results will not be confirmed until the Electoral College votes in December, and any lawsuits are settled. However, as is traditional, President-elect Joe Biden is quickly naming individuals, to start on January 20, 2021, to serve as senior White House officials, and is moving forward with transition efforts regarding other political appointments and policy priorities. Transition teams have been named for a number of federal agencies and departments. These teams will review current projects and initiatives and make recommendations on political appointments. The NDSC policy team is closely following transitions in key departments.

NDSC Senior Policy Advisor Stephanie Smith Lee shares her insights on what to expect regarding the prospects for education in the Biden Administration in an article published by Education Dive.


Educating Students with Disabilities During COVID-19
As the coronavirus continues to spread, many schools, students, and families struggle with distance learning. While remote instruction is working well for some students,  many teachers and parents struggle to support their students through distance learning.  For many students, especially students with disabilities, distance learning just is not working well. The challenges are compounded when districts do not follow the U.S. Department of Education’s guidance on educating students with disabilities.

NDSC Senior Policy Advisor, Stephanie Smith Lee, presented the challenges students with disabilities face during the pandemic to the U.S. Office of Special Education Programs (OSEP) Director at a Consortium for Citizens with Disabilities Education Task Force listening session. Following the session, she polled parents through the National Down Syndrome Advocacy Coalition (NDAC) and #321Advocate Facebook pages and compiled a report for OSEP on specific challenges parents and students are facing and recommendations for addressing those challenges, including increased monitoring.


Update on COVID-19 Relief Bills
The election is behind us, and Congress is currently in what is known as a “lame duck session.” Congress and the Administration have re-engaged in negotiations for a COVID-19 relief package, but time is running out to make a deal as the 116th Congress winds down. NDSC continues to advocate for dedicated funding for Medicaid Home and Community-Based Services (HCBS) to be included in this relief package, as well as additional and dedicated funding for the implementation of the Individuals with Disabilities Education Act (IDEA) during the COVID-19 pandemic. NDSC is also advocating for expanded eligibility for economic impact payments to adult dependents and expanded paid/sick leave for caregivers who can’t work because they are caring for an adult with a disability. Please continue reaching out to your Senators and U.S. Representatives to urge them to include funding for HCBS in the next COVID-19 bill.



COVID-19 Vaccine Distribution
There has been significant progress made toward a COVID-19 vaccine, and we are hopeful that a vaccine will soon become available. We are concerned, though, that if there is not a sufficient vaccine supply to implement a widespread vaccination campaign immediately, the needs of people with disabilities and direct care workers would be delayed.  As part of the Consortium for Citizens with Disabilities Health Task Force, NDSC has signed onto a set of principles to be considered when developing a distribution plan or allocation framework.  We also submitted a public comment for the October 2020 meeting of the Advisory Committee on Immunization Practices (ACIP) at the Centers for Disease Control and Prevention (CDC). In short, we are advocating for the CDC to include all residents of congregate facilities in the first allocation phase, to protect people’s civil rights in allocation decisions, and ensure that the vaccine’s physical distribution and administration are accessible to people with disabilities.

However, CDC guidance is non-binding, and your advocacy is needed on the state level.  We recommend that everyone do their part by taking the following actions:

  • Review your state’s distribution plan for COVID-19 vaccines – most state Departments of Health will have this publicly available on their websites.
  • Reach out to your Governors, State Departments of Health, and state legislators and urge them to place people with disabilities and their support personnel in the priority category.

Feel free to use language from the CCD principles and comments in your letters.


Keeping All Students Safe Act Re-Introduced
The Keeping All Students Safe Act has been reintroduced by Rep. Beyer (D-VA), Rep. McEachin (D-VA), Chair Scott (D-VA), Senator Murphy (D-CT), and Ranking Member Murray (D-WA). This bill would make it illegal for any school receiving federal funds to seclude a child. It would also prohibit schools from physically restraining children, except when necessary to protect students and staff.  Lastly, the bill would better equip school personnel with the training they need to address challenging behavior with evidence-based, proactive strategies. NDSC is a member of the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) and has signed onto a letter of support for this bill from the CCD Education Task Force. For more information, visit the Stop Hurting Kids website. www.stophurtingkids.com.


U.S. Supreme Court Case on the Affordable Care Act
On November 10, the U.S. Supreme Court heard oral arguments on the Affordable Care Act (ACA) ‘s constitutionality in the consolidated cases California v. Texas and Texas v. California. At issue is whether Texas and individual plaintiffs have the standing to bring a lawsuit to challenge the ACA’s individual mandate, whether the individual mandate was rendered unconstitutional by the elimination of the tax penalty by the 2017 Tax Cuts and Jobs Act, and if the individual mandate is ruled unconstitutional, whether the rest of the ACA can survive. See here for a detailed explanation of the cases.

The ACA is critical to people with disabilities. It helps people get health insurance and requires that plans can’t exclude you or charge you more based on preexisting conditions, and bans benefits caps (annual and lifetime caps). The ACA also requires all plans to cover “essential benefits” and provides financial assistance for low-income people to access healthcare. Our colleagues at The Arc of the United States explain why these aspects of the ACA are vital to people with disabilities. NDSC has signed on to an Amicus Brief to support upholding the ACA.

Various legal analysts and media sources are hopeful that the Court won’t strike down the entire ACA based on their questioning, but a decision won’t be announced until Spring 2021. We will continue to keep you informed about the status of the ACA and any advocacy opportunities for it that arise.


COVID-19 Hospital Visitation Resource
Around the country, COVID-19 cases are continuing to rise and overburdening our health care systems. Many hospitals and facilities have put in place strict no-visitor policies to minimize exposure to COVID-19.  These policies have prevented patients with disabilities from receiving support from family members or other staff necessary to receive equal access to medical treatment and effectively communicate with medical personnel.  In June 2020, the U.S. Department of Health & Human Services Office of Civil Rights issued guidance that clearly outlines that states and hospitals have legal requirements to provide reasonable accommodations to people with disabilities, including permitting them to have a family member or support person with them.  This summer, NDSC created a resource summarizing this guidance and giving patients with disabilities and their families talking points should they need to go into the hospital.


TIES Center Resources
NDSC Senior Education Policy Advisor, Ricki Sabia, works with the TIES Center on parent briefs and other tools for the inclusion of students with significant cognitive disabilities. The TIES Center continues to create new resources for educators, parents, families, as well as state, district, and school administrators that support inclusive education and system change.

Recently, NDSC Policy Director Heather Sachs joined TIES Center professionals in her capacity as a parent to discuss one of their latest resource briefs, “Pivoting Between Paraprofessional Support in Inclusive Schools and Distance Learning.” This discussion was featured as part of the NDSC Parent Webinar Series. The webinar’s recording and slides can be found on the NDSC website under the Resources & Education tab – Parent Webinars.  To stay updated on new TIES resources, follow TIES Center on Facebook.