Policy & Advocacy Newsline ~ September 2020

Update on COVID-19 Relief Bills

Congressional negotiations in the Senate on the next major COVID-19 relief package have hit a standstill, but we are hopeful that increased pressure from the White House on the House leadership to move on a COVID-19 bill will reinvigorate the discussions. As the days pass, the chances for a standalone COVID-19 Relief bill grow slimmer.

In May, the House passed its 4th COVID-19 Relief Package and the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act (H.R.6800), which contained many positive provisions for people with disabilities, but the Senate has not taken up this bill. In late July, the Senate proposed its own COVID-19 relief package known as the Health, Economic Assistance, Liability Protection, and Schools (HEALS) Act. The HEALS Act contains some positive provisions for people with disabilities but is wholly insufficient to meet our needs during this pandemic. The latest Senate proposal, the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act (referred to as the “skinny” COVID proposal), was recently voted down in the Senate along party lines 52-47. Senator Rand Paul (R-KY) joined the Democrats to reject this bill, thus preventing it from moving forward. This bill did not include our top priorities of increased funding for Medical Home and Community-Based Services (HCBS) and special education funding for implementing the Individuals with Disabilities Education Act (IDEA), neither of which received dedicated funding in previously enacted COVID relief bills. The Center for Public Representation created a comparison of how disability priorities are addressed in the HEROES Act, the HEALS Act, and the latest “skinny” proposal.

We ask that you contact your Senators and Representatives to express your disappointment that these funding priorities for people with disabilities have been neglected and urge them to find a solution to these shortfalls. You can use our Action Alert for an easy call script and more information. You can find contact information for your elected officials at https://contactingcongress.org.

Civil Rights Commission Releases Report on Subminimum Wage

The U.S. Commission on Civil Rights (USCCR) has released a report regarding, Subminimum Wages: Impacts on the Civil Rights of People with Disabilities. This report has determined that Section 14(c) of the Fair Labor Standards Act – which permits employers to pay less than minimum wage to individuals with disabilities – is “inconsistent with the civil rights protections to which people with disabilities are entitled.” It also recommends a phase-out of Section 14(c) along with capacity building for competitive integrated employment while reconceptualizing employment for people with disabilities. A summary of key recommendations found in the report can be found in a recent press release by the USCCR.

Last November, NDSC Policy Director Heather Sachs testified before the USCCR in favor of responsibly phasing out Section 14(c) while putting supports in place to ease the transition. The NDSC firmly believes that all individuals with Down syndrome should have the same rights and opportunities as everyone else. Like many other disability organizations, NDSC views Section 14(c) of the Fair Labor Standards Act as outdated, discriminatory, and reinforcing a life of poverty, segregation, and dependency on public support for people with disabilities. We recognize and respect that there are individuals in our community who are content with their current placements and are reluctant to make this transition. The USCCR has taken this into consideration and recommends key steps that Congress and the federal government can take to phase out Section 14(c) responsibly while reconceptualizing employment opportunities for people with disabilities.

The NDSC strongly supports the findings in the report and encourages Congress and the federal government to act to implement its recommendations. NDSC’s full statement and more details of the report can be found on our website.

Medical Rationing Complaint Resolutions

The Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services continues to resolve complaints about discriminatory rationing of medical care filed by our colleagues at the Center for Public Representation and other national disability groups. Recently, OCR announced a favorable resolution to a challenge to Utah’s Crisis Standard of Care Guidelines that states hospitals must provide information on the full array of available treatments and that they cannot issue blanket Do Not Resuscitate (DNR) policies. The OCR also weighed in on the discriminatory impact of several other provisions common in many states’ rationing plans. To learn more about the resolution of this Utah complaint and other medical rationing complaints visit the Center for Public Representation’s website.

Expanding Food Assistance

As a result of the pandemic and the worsening economic situation, more people are signing up for food assistance. Many people with disabilities rely upon the federal government’s Supplemental Nutrition Assistance Program (SNAP). NDSC has been advocating to give states and individuals greater flexibility during this time and to better ensure that those on SNAP are able to use their benefits for things such as delivery and online ordering. As well, we are advocating to make it easier for people with disabilities who may need SNAP in the near future to enroll in the program. NDSC recently signed onto a letter of support for two new pieces of legislation, the Pandemic Child Hunger Prevention Act (H.R.7887) and the Emergency SNAP Flexibilities Extension Act (H.R. 7794), to address these concerns. NDSC Policy Director Heather Sachs serves as a Co-chair of the Financial Security & Poverty Task for the Consortium for Citizens with Disabilities, which has been very engaged in this issue.

Advocacy in Action: NDAC Member, Deborah Tomai

NDAC member and Executive Director and Founder of Rio Grande Valley Down Syndrome Association, Deborah Tomai, of Texas, spoke on our recent National Down Syndrome Advocacy Coalition (NDAC) Quarterly Update Call about her firsthand experience with community advocacy.

She introduced herself and told her story; My name is Deborah Tomai.  I’m a mom of three and the co-founder of the Rio Grande Valley Down Syndrome Association.  I recently had the opportunity to advocate for change in my local school district.  At a school board meeting, before the year started, a board member made reference to “special ed” in a derogatory manner.  I reached out privately to the board and the superintendent through email, but it’s election season, so the press got involved.

Over the last several years, RGVDSA has built some strong partnerships with other local disability organizations.  We have sponsored events, worked together on conferences, and shared resources.  Because the relationships were in place already, it was easy to unite to advocate for change in the district.  Ultimately, fifteen organizations signed onto a statement.  I was able to meet with the offending board member privately, along with two other advocates.  We presented the letter with suggestions for the district, ranging from disability awareness training to establishing a Special Education Advisory Committee.  Since then, the board has received training on disability and diversity, and they have voted to move ahead with the Special Education Advisory Committee.   While I’m disappointed that a board member made an insulting comment, I’m excited to see our district moving in a positive direction.

Kudos to Deborah for turning a bad situation into positive change. We also appreciate Deborah telling those in attendance on the NDAC webinar that many of the tips and techniques she used to diffuse and turn around the situation were those she learned at NDSC’s Advocacy Training Boot Camp.

If you are interested in learning advocacy techniques and how to use your voice to bring about positive change, please become a member of NDSC’s nationwide grassroots advocacy program, the National Down Syndrome Advocacy Coalition. Membership in NDAC is free and we welcome advocates of all abilities and levels of experience!

NDSC Helps CCD Submit Comments on IDEA Paperwork Reduction Waivers

NDSC’s Senior Policy Advisor, Stephanie Smith Lee, took the lead, along with Candace Cortiella of the Advocacy Institute, in drafting a letter to the Consortium for Citizens with Disabilities (CCD), which raised significant concerns about the U.S. Department of Education’s proposed IDEA paperwork reduction program. This program would allow waivers of certain paperwork requirements under IDEA, which could potentially impact the Free, Appropriate, Public Education (FAPE) of students with disabilities. To date, no states have submitted applications under the proposed waiver program.

New TIES Center Briefs on the General Education Curriculum

NDSC’s Senior Education Policy Advisor, Ricki Sabia, co-authored two new TIES Center briefs. The TIES Center is the federally funded Center on inclusive policies and practices for students with significant cognitive disabilities. TIES Brief #4 describes what access to and progress in the grade-level general education curriculum means for these students. There is also a simplified version of the document, which will help parents determine whether their child with significant cognitive disabilities is being provided with meaningful access to the grade-level general education curriculum. Visit the TIES website for many more resources, including numerous distance learning articles and resources.

New U.S. Department of Education Resources on Student Learning and Transition Services During COVID-19

The U.S. Office of Special Education Programs (OSEP) released a new resource to help parents support learning during the COVID-19 pandemic. It is a multi-media learning module that provides tips to get students ready to learn, strategies for reading and math instruction, support for social and emotional well-being, and considerations for the parents of struggling learners and students with disabilities.

The U.S. Office of Special Education and Rehabilitative Services (OSERS) sent a letter to special education and vocational rehabilitation administrators across the nation addressing transition services during the pandemic. Recognizing that COVID-19 has resulted in students accessing educational services differently than in the past, whether it be virtual, in-person, or a hybrid approach, the importance of the provision of transition and pre-employment transition services has not changed.  In addition to the letter, OSERS also recently released an updated 60-page transition guide that is meant to help students with disabilities and their families understand the process and the options available to them as they prepare to leave public education.

Federal Courts Strike Down Federal Rule for Distributing CARES Act Funding to Private Schools

The U.S. Department of Education confirmed that its rule directing how pandemic relief must flow to private school students is “no longer in effect” across the country after a federal court struck it down last week. It is possible that the court decision could be appealed. The rule, which was finalized in July, ordered public school districts to send a more significant share of their CARES Act funding to private school students than is typically required under federal law. This rule would have cost public schools over $1 billion. In addition, school districts have been hesitant to spend their CARES funding because they were unsure of how much was supposed to go to private schools

Read an article about the issue is at

TPSID Project Directors Meeting

Stephanie Smith Lee, NDSC Senior Policy Advisor and Chair of the Think College Accreditation Committee, spoke during the recent TPSID Project Directors virtual meeting. She discussed the development of model accreditation standards and what these standards mean to the future of college programs for students with intellectual disabilities. Madeleine Will, NDSC Policy and Advocacy Advisory Council member, spoke about the past and future for these programs. The Think College National Coordinating Center (NCC) brings together project directors and key staff from Transition Programs for Students with Intellectual Disabilities (TPSID) model programs to network and share promising practices regarding postsecondary education programs for students with intellectual disability.

To review the twenty-nine videos from this meeting, visit https://fast.wistia.net/embed/channel/j6twyzc07f.

SOTA Conference

While the 2020 State-of-the-Art Conference on Inclusive Postsecondary Education and Individuals with Intellectual Disability has unfortunately been canceled due to COVID-19, the Student Leadership portion of the conference and the college fair are moving to a virtual platform to take place on October 8-9 and will be available to view later.

This free online Student Leadership conference is designed for high school students nearing graduation, students who have graduated from high school interested in going to college, and current college students.  The event will feature student-led presentations, social events, and karaoke.

Register for the Student Leadership Conference at

Students are also invited to the free virtual College Fair that will take place live on October 7 and will be available to view throughout the year. The event will showcase dozens of inclusive college programs offering options for students with intellectual disability from around the country.

Attend the virtual College Fair

Voting is so important!  It is your chance to ensure that your voice is heard and how you take part in choosing the people that will run our government. Our government makes laws, decides how money is spent, and much more. Who is elected to run the government could make a big difference for people with disabilities and their families.

Do you know how to vote? Did you know guardianship can affect your voting eligibility? Are you aware of the process and deadlines involved for mail-in voting or absentee ballots? Do you know who the candidates are in your state, and what their viewpoints are?  Let us help answer all your questions and more!

We are excited to announce the NDSC Your Voice, Your Vote Campaign.  We have added a NEW NDSC Voter Resource Library to our website, where you can find the resources you need.  Follow us on Facebook to get answers to your questions, see feature self-advocates and guest bloggers, and find helpful videos and more information. We will help you stay informed about state registration deadlines, share voting facts, election information, everything you need to know to cast your vote.

NDSC Your Voice, Your Vote: What to Know Before You Cast Your Ballot Webinar
YVYV Webinar

Join NDSC’s Policy and Advocacy Team on Tuesday, October 7, 2020, at 2:00 PM EST as we break down the November elections and help you make informed decisions. What is at stake in terms of the political landscape of Washington, D.C? Learn the questions can you ask candidates to determine their position on disability policy priorities and why is voting so important. In this webinar, self-advocate Connor Long will join the NDSC Policy Team to discuss his passion for voting and his recent work on the self-advocate-led voting project, “Our Vote Counts.”