Policy & Advocacy Newsline ~ December 2020

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COVID-19 Vaccine Distribution

The U.S. Food and Drug Administration (FDA) has approved both the Pfizer/BioNTech and Moderna COVID-19 vaccinations for immediate, emergency use. Vaccines are now being shipped across the country and given to essential health care workers, with other high-risk individuals such as those in nursing homes to follow.

NDSC has been advocating for all people with intellectual and developmental disabilities (IDD), their caregivers, and support personnel to be given priority in vaccine allocation and ensure that vaccine allocation is done in an equitable, accessible way.  According to a recent Science Magazine report, people with Down syndrome, in particular, are ten times more likely to die from complications from COVID-19, and people with IDD have been disproportionately impacted in many other ways. The Centers for Disease Control and Prevention (CDC) have issued guidelines for distributing the vaccine, but it is ultimately up to the states to develop individual plans. A compilation of all state plans can be found on the Council of State Governments website.  Many plans are still being finalized, so you are encouraged to reach out to your Governor’s office and state Department of Health to urge them to give people with Down syndrome and IDD priority in vaccine distribution.  To see the plan for your state and for information on how to contact your state health officials, visit your state’s Department of Health website.

NDSC helped develop a joint position statement with the Academy of Developmental Medicine & Dentistry (AADMD) and other medical and disability advocacy organizations urging the prioritization of people with IDD in the allocation of vaccinations. Included in the statement are the following NDSC recommendations:

  • Individuals with intellectual and developmental disabilities who live in group homes or other community residential settings should be considered at equivalent risk to older adults who live in congregate settings and thus be included in equivalent phases of vaccine allocation;
  • All direct support professionals (DSP), including group home staff aiding persons with intellectual and developmental disabilities, should be considered essential health care workers and should be included in the appropriate phase of vaccine allocation; and
  • Given increased rates of serious illness and death from COVID-19 in people with intellectual and developmental disabilities, persons with this diagnosis or condition should be explicitly included in the list of high-risk diagnoses used to determine vaccine priority. Individuals with IDD and those who live with or provide their care must be included in the same vaccine allocation phase, regardless of living setting.

Additionally, NDSC has signed onto vaccine distribution principles from the Consortium for Citizens with Disabilities and the Leadership Conference on Civil and Human Rights.  We have also signed onto a statement from the Autism Society of America that encourages people with IDD to get vaccinated and urges priority for this population in vaccine distribution.

The CDC’s Advisory Committee on Immunization Practices (ACIP) has just released recent phased vaccine allocation recommendations. Unfortunately, most people with IDD (except those living in long term care facilities) are not included in the top tier of priorities but are specifically named in Phase 2. These are only recommendations, though, and it is up to the individual states to set their own allocation plans.

At this point, we are aware that all people with IDD (regardless of where they live) have been named a Phase 1 priority in a handful of states, including Indiana, New York, Ohio, and Pennsylvania. In the upcoming weeks, federal, state, and local entities will continue to update their guidance and plans related to the distribution of the COVID-19 vaccines. NDSC will continue to advocate for federal, state, and local leaders to prioritize people with IDD and equitable and accessible vaccine distribution.  We highly encourage you to reach out to your state public health officials to share information about the impact of COVID-19 on people with IDD and the need for this population to receive priority in vaccinations.


Update on COVID-19 Relief Bill

Congress has passed a $900 billion COVID-19 relief package, which President Trump is expected to sign into law. This aid package was attached to a $1.4 trillion “omnibus” appropriations bill that will fund the federal government through September 30, 2021. This COVID relief bill will provide additional relief to small businesses, more money for vaccine distribution and health care workers, and offers a new round of stimulus checks to paid workers. Our colleagues at the Center for Public Representation have provided a comparison of this latest bill to previous COVID-19 relief proposals. Some noteworthy inclusions and exclusions are:

  • Direct stimulus payments: The new COVID-19 relief bill will provide additional stimulus payments of $600/individual, $1,200/married couple, and $600/child dependent to people who qualified under the CARES Act for the first round of payments. Unfortunately, despite our advocacy efforts and the inclusion of bipartisan language in recent previous versions of the bill, Congress has again limited the dependent tax rebate to dependents under age 17, excluding the more than 400,000 individuals who claim adults with disabilities as their dependents.
  • Funding for Home and Community Based Services (HCBS:) Although Home and Community Based Services (HCBS) have been a top priority for NDSC and many of our colleagues, none of the COVID-19 relief bills to date have contained any dedicated funding for it. Thank you to all who acted on the recent NDSC  Action Alert.  Although we were initially optimistic when funding for HCBS was included in recent versions of this bill, we were very disappointed to learn that this funding did not make it into the final COVID bill.
  • Education: The COVID-19- relief bill contained an additional $82 billion for schools and universities. While the bill states that this funding may be used for students with Individualized Education Programs (IEPs), it is unfortunately not explicitly earmarked for this use.
  • Nutrition and housing: On a positive note, the COVID-19 relief package included an additional $13 billion to boost Supplemental Nutrition Assistance Program (SNAP) benefits for six months and $25 billion for rental assistance.
  • Unemployment Insurance: The COVID-19 bill also included $300/week additional unemployment aid for three months; unemployment benefits were also expanded for gig/contract/unemployed workers.
  • Money Follows the Person (MFP): NDSC is pleased that the omnibus funding bill includes a 3-year reauthorization of the MFP program that assists people with disabilities to transition from institutional to community-based settings. This is very encouraging news as MFP has gone through a series of very short-term reauthorizations, which has created much instability and uncertainly in the state MFP programs.

Thank you to everyone who contacted your Members of Congress to advocate for NDSC’s bill priorities. We will continue to push for more COVID-19 relief for our community when Congress’s next session begins in January 2021.


Administration Transition

The Electoral College has now confirmed the presential election results. Joe Biden will be the next President of the United States, with Kamala Harris serving as the next Vice President. Transition teams have been named for a number of federal agencies and departments, and planning is well underway. NDSC has been communicating with various Biden transition teams as well as the congressional leadership to share our policy priorities for the next Administration. NDSC participated in drafting and editing the final policy recommendations of the Consortium for Citizens with Disabilities (CCD) for the incoming 117th Congress and the Biden-Harris Administration, outlining the needs of people with disabilities and their families.


U.S. Department of Education Transition

President-elect Joe Biden is rapidly announcing cabinet choices for his incoming administration. CNN reported on December 21 that President-elect Biden is planning to nominate Miguel Cardona, the Connecticut education commissioner, as his Secretary of Education. Previously, most news sources cited Lily Eskelsen Garcia as one of the top two contenders for the position.

NDSC and a coalition of national advocacy organizations developed a letter to the Biden Transition Team Nominations Committee expressing serious concerns about the potential nomination of Lily Eskelsen Garcia. The letter addressed the positions previously taken by the National Education Association (NEA) while Garcia served as president. The letter concluded with encouragement “that any nominee for Secretary of Education has a strong track record of supporting the inclusion of and ensuring high standards for students with disabilities​.” The letter was cosigned by many local, state, and national organizations.

The Biden Education Transition Team is responsible for reviewing current projects and initiatives and making recommendations on political appointments. NDSC Senior Policy Advisor, Stephanie Smith Lee, was invited to attend a meeting with this team and several other disability organization representatives to share NDSC priorities for the U.S. Department of Education under the next Administration. An NDSC memo to the team outlined our recommendations, including an increased focus on inclusion, support for inclusive higher education, addressing the impact of COVID-19 on students with disabilities, and other priorities.


Congress Approves Lifespan Respite Care Act Reauthorization

A bill to reauthorize the Lifespan Respite Care Act (H.R.8906) has passed the House and Senate and is now awaiting President Trump’s signature. The Lifespan Respite Care Program, through grants to states, helps build coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with disabilities. This program helps family caregivers pay for respite or find funding sources, encourages the / development of new and innovative community and faith-based respite opportunities, and trains respite workers and volunteers. NDSC has supported and advocated for the passage of this bill. To obtain more information about respite services or locate respite care services in your community, check out the ARCH National Respite Network.


Law Enforcement Training Bills

A new package of bills called the Law Enforcement Education and Accountability for People with Disabilities (LEAD) Act was introduced by Senator Bob Casey (D-PA). The Safe Interactions Act (S.4989) will address training for both new and veteran law enforcement officers on interactions with people with disabilities. Another bill, called the Human-services Emergency Logistics Program (HELP) Act (S.4987), would enhance the 2-1-1 regional networks to divert non-criminal calls away from law enforcement. NDSC supports these bills, which will be reintroduced next Congress.


Subscribe to TIES Newsletter

TIES Center is the federally funded center on inclusive practices and policies for students with significant cognitive disabilities. NDSC Senior Policy Advisor Education and TIES parent liaison, Ricki Sabia, is concerned that families ( and their children’s educators/administrators)  are not aware when new resources have been posted. To stay up to date and ensure that you are not missing new information, you can subscribe to the TIES newsletter by visiting the TIES website and completing the short form at the bottom right of the TIES landing page (https://tiescenter.org/)

Two recent additions to the TIES parent video library include

Helping Your Child with Routines at Home  https://youtu.be/nr53dGswN_w
Helping Your Child with the Foundations of Communication at Home  https://youtu.be/PNOPYBZSmwg

Additionally, TIES released a new blog explaining why its mission is so vital to IDEA implementation for students with the most significant cognitive disabilities.


GAO Report on Distance Learning for Students with Disabilities

The General Accounting Office (GAO) has published a report on the challenges of distance learning for students with disabilities and English learners. The Report examines obstacles posed by remote learning such as lack of access to technology and specialized equipment, language barriers, shortened school hours, diverse student needs, and family challenges.


Restraint and Seclusion in Schools

The Council of Parent Attorneys and Advocates (COPAA) has released a paper entitled The Crisis of Trauma and Abuse in Our Nation’s Schools to support the recent introduction of the Keeping All Students Safe Act (KASSA), which would set minimum standards in the use of restraint and prohibit the use of seclusion in all schools that accept federal education funds. The comprehensive report makes a compelling argument for a new federal law (KASSA) aimed at managing the crisis and describes how our nation’s federal special education laws can work both for and against children who are traumatized by their experiences with seclusion and restraint.