Policy & Advocacy Newsline ~ April 14, 2020

Federal Coronavirus Legislation Update

The worldwide COVID-19 pandemic has upended everyone’s lives in many ways, but it appears that the disability community has been disproportionately impacted. Congress has passed three significant bills to address this crisis, yet many priorities of the disability community have not been adequately addressed. NDSC is working with our partners in the Consortium for Citizens with Disabilities to advocate for these priorities. We have also joined over 200 disability, civil rights, faith-based, and health advocacy organizations led by the American Association for People with Disabilities in sending a letter to Congress outlining our priorities and imploring Congress to include them in the next COVID-19 bill.

The first bill, known as the Coronavirus Preparedness and Response Supplemental Appropriations Act, became law on March 6, 2020, and included $8 billion in emergency funding for existing health and human services spending. 

The second bill, known as the Families First Coronavirus Response Act, became law on March 19, addressed issues such as paid sick leave for parents with children under the age of 18 who are home from school, expanded unemployment benefits, Medicaid funds, nutrition assistance, and insurance coverage of COVID-19 testing.

The third bill, known as the Coronavirus Aid, Relief, and Economic Security Act, or CARES Act (S. 3548/H.R. 748), was signed into law on March 27. This $2 trillion package included cash payments (Recovery Rebates), extra unemployment benefits, a temporary extension of the Money Follows the Person program to November 30, 2020, housing benefits, education grants to states, small business loans, voting assistance, and more nutrition assistance. While these provisions are generally positive for the disability community, they fall drastically short of addressing many of our main priorities.  Our colleagues at the Center for Public Representation have provided and continue to update a list of disability community priorities that are included and are not included in the CARES Act.

Congress is now negotiating a fourth COVID-19 bill. We are working hard to ensure the following priorities are included in this bill:

  • Increased funding of $20 billion to the Centers for Medicare & Medicaid, Home and Community Based Services so that people with disabilities can receive the resources and supports necessary stay in their homes and communities.
  • Increased funding of $12.5 billion for IDEA to support school and related service personnel in the provision of special education supports and services to students through virtual and distance learning.
  • Congress must also ensure that student/parent rights under IDEA are protected. There is sufficient flexibility already provided by U.S. Department of Education guidance.

Additionally, we are advocating for Congress to include these other priorities in the next COVID bill or for the Administration to issue guidance:

  • Designating Direct Support Professionals (DSPs) as “essential workers” so that they have adequate access to Personal Protective Equipment and childcare benefits.
  • Expanding Paid/Sick Leave to all caregivers who have to leave their job to care for an adult with a disability whose program has closed or their DSP becomes ill.
  • Protecting the rights of people with disabilities from discriminatory rationing of healthcare.

We ask that you call your Senators and Representatives and ask them to include these priorities in any new COVID-19 legislation. You can also make these requests by tagging them on social media using the hashtag #WeAreEssential in your social media advocacy. See our Action Alert!


CARES Act Provisions Related to K-12 Education

The CARES Act, which provided funding for many sectors of society. also included provisions related to K-12 education. The key provisions include:

  • $13.5 billion in dedicated aid for K-12 schools was provided, as well as billions more for childcare and nutrition services. This funding will be distributed by states to school districts and is to be used for all students, including those with disabilities. There is no specific earmark for IDEA funding, which creates an advocacy opportunity at the state/district level, to ensure the funding is used to benefit ALL students, including students with disabilities. NDSC is advocating for IDEA specific funding to be put in the next stimulus bill.
  • The Act gave the Secretary of Education limited waiver authority under the Every Student Succeeds Act. These waivers have a very streamlined process with no opportunity for public comment. Fortunately, advocates were able to keep this waiver authority from being broader and longer in duration (e.g., the original bill allowed for a year waiver with another year extension). The CARES Act waivers only apply to the 2019-2020 school year. 

NDSC played a key behind-the-scenes role in ensuring that the broad IDEA waiver authority in the original bill was not included in the final bill. Although there are no IDEA waivers in the CARES Act, the law requires Secretary DeVos to report within 30 days to Congress, if she thinks any additional waivers are necessary for IDEA, as well as ESSA, the Rehabilitation Act, and the Carl D. Perkins Career and Technical Education Act, to provide schools with “limited flexibility”.

NDSC prepared an in-depth analysis of relevant sections of IDEA, U.S. Department of Education guidance, and proposed waiver requests, which has been shared with Capitol Hill, the U.S. Department of Education, and other disability organizations. This analysis shows that broad waivers of IDEA are not necessary and would diminish fundamental civil rights. NDSC is working in collaboration with other disability organizations in opposition to such waivers. You may view a brief summary of the CARES Act for K-12 education.  The report from Secretary DeVos, discussed above, was not included in this summary.


Discrimination in Medical Treatment Rationing

The COVID-19 pandemic has overburdened the U.S. healthcare system and may create situations where rationing decisions may need to be made. NDSC, along with the rest of the disability community, is extremely concerned about the potential impact on people with disabilities if the government or hospitals make rationing decisions in a discriminatory way that would devalue the lives of people with Down syndrome and other disabilities. These concerns were validated as some states began developing medical rationing plans with language that clearly violated federal law as discriminatory towards people with disabilities, leading several advocacy organizations to file complaints with HHS’ Office of Civil Rights. OCR has been reviewing these complaints and, in the Alabama case, has already issued a favorable resolution.

Thanks to advocacy efforts from the disability community, the U.S. Department of Health and Human Services (HHS) issued a bulletin on March 28, emphasizing the federal civil rights laws that protect people with disabilities from discrimination. Several national disability organizations have issued guidance for states based upon this bulletin. For more information on this issue, visit the Center for Public Representation.


NDSC, along with the Global Down Syndrome Foundation and the National Down Syndrome Society, hosted a webinar on this topic on Tuesday, April 14, at 2:00 PM EDT. Visit the NDSC website to receive a link to the recording to listen to at your leisure.


Paid/Sick Leave Under COVID-19 Bills

The Families First Coronavirus Response Act included resources for paid sick leave but neglected to add support for caregivers of people with disabilities who are over 18 who have lost their usual source of care. In response to advocacy from the disability community and providers, the Department of Labor issued a temporary rule on April 6, expanding paid sick leave to parents of adults with disabilities. Unfortunately, this rule does not go far enough in that it still does not include other adult caregivers such as siblings. For several weeks, the Department of Labor accepted comments on paid sick leave for caregivers of people with disabilities. NDSC submitted comments asking that coverage be extended to other caregivers in addition to parents.


Coronavirus Stimulus Payments Under the CARES Act

Under the CARES Act, the federal government made payments (Recovery Rebates) available to many people whose adjusted gross income was less than $75,000 for an individual or $150,000 for a married couple filing jointly. The full payment is $1,200 for individuals and $2,400 for married couples who filed jointly. There is also a $500 supplemental payment per child age 16 or younger available. Undocumented people, those who lack Social Security numbers, those who file with an Individual Taxpayer Identification Number, or adults previously claimed as dependents are not eligible for the rebates.

Because these payments are like tax rebates, the government has specified that asset and income limits do NOT apply. This means that people with disabilities can accept these payments without putting Supplemental Security Income (SSI), Social Security, Supplemental Nutrition Assistance Program (SNAP), and other benefits at risk. Our colleagues at The Arc of the United States have prepared a helpful fact sheet about Recovery Rebates.

There has been confusion about how to request these payments, and how and when these payments will be made. We have been working with the Administration and Congress to make these payments automatic for people on SSI. Initially, the Department of Treasury was going to require people on SSI to file tax returns (even if they showed no income). The department has recently confirmed that payments to people on Social Security will be automatic. Rebates will be issued by the Internal Revenue Service (IRS). Non-filer information that would have been obtained through a tax return may be submitted through a portal developed by the IRS. The development of the portal is a step in the right direction but still poses barriers to people with disabilities, their families, and service providers, especially those with limited internet access. Please visit irs.gov/coronavirus for the most up-to-date information.

Non-Fliers May Submit Information to the IRS Portal Here

U.S. Department of Education COVID-19 Guidance

In March, the U.S. Department of Education published several documents related to COVID-19 and K-12. The general COVID-19 pages are specific guidance documents related to the provision of services to students with disabilities. The initial Q&A was released but was soon followed by a supplemental fact sheet a few days later. These documents address the fact that while distance learning may need to be done differently for certain students with disabilities, FAPE still applies, and educators need to make distance learning accessible to all students. An additional fact sheet was also released March 16, by the Office of Civil Rights.


Education Resources

NDSC COVID-19 Webinars on IDEA Implementation


On April 9, NDSC and the Council of Parent Attorneys and Advocates partnered to present a webinar to address issues with IDEA implementation during COVID-19 school closures and answer parent questions. NDSC Senior Education Policy Advisor, Ricki Sabia, discusses guidance issued by the US Department of Education on the provision of services to students with disabilities during coronavirus related school closures. In addition, frequently asked questions about COVID-19 and parent/student rights are answered by COPAA Legal Director, Selene Almazan.

Listen to Recorded Webinar

Download Webinar Slides 

NDSC Parent Webinar Series: Online Learning


NDSC also hosted a 3-part webinar providing insight for parents and educators adjusting to online learning. The three sessions addressed:

  1. Preparing Yourself, Your Family, and Your Home for Online Learning
  2. The ABCs of K-12 Online Learning for Students With Disabilities
  3. Practical Tips and Tools for Online Learning

Access Webinar Series

NDSC is a Partner in the Educating All Learners Alliance

EALA represents a dynamic alliance of non-partisan groups deeply committed to the success of students with disabilities. On April 8, EALA launched a website that serves as a hub of curated tools, strategies, tips, and best practices for supporting students with disabilities.

Upcoming features of this site may include social media events, interactive access to the community, expert webinars, and “office hours” for educators to connect with leaders and colleagues. The goal of the site is to provide educators with:

  • Case study exemplars that will help with lesson planning and instruction that scales research-based approaches
  • Templates and tools helpful to advancing learning in remote environments  
    Educator guides for effective use of tools for differentiated instruction and the implementation of accommodations and accessibility for students with disabilities in online learning
  • A resource library for administrators and educators to quickly set up best-in-class support practices (e.g., online teletherapy to teleconferencing) 
  • A community platform for special educators and others to share resources  

TIES Center is Creating Distance Learning Resources

TIES Center is the federally funded center on inclusive practices and policies for students with significant cognitive disabilities. NDSC’s Ricki Sabia is the parent liaison for this center. Recognizing that inclusion right now means meaningful participation in the general education curriculum that is being offered through distance learning, TIES is creating unique resources for students with significant cognitive disabilities. Current resources can be found on the landing page of the TIES website, search the link for distance learning on the right side of the page.  Check back often to the TIES site as more resources are yet to come.

The Center for Accessible Educational Materials (AEM)

The Accessible Educational Materials (AEM) site was designed to help educators learn the basics of accessible materials and technologies. Through the website, you may register for and view webinars and presentations from AEM events, and discover AEM publications to dive deeper into AEM.


Is it Time You Become an Advocate?

The National Down Syndrome Advocacy Coalition (NDAC) is a member service of the National Down Syndrome Congress (NDSC). NDAC is a grassroots advocacy service designed to educate individuals with Down syndrome, their family members, and other allies about policy issues and provide advocacy tools and techniques needed to effectively engage with their legislators to advocate for change.

 In a note from the Executive Director of NDAC Group member organization Down Syndrome Alliance of the Midlands, Leah Janke writes about NDAC: