Policy & Advocacy Newsline ~May 2020

Invitation to Attend NDSC Advocacy Training Boot Camp

NDSC’s virtual Convention from Your Couch has begun, but there is still time to register and receive all of the workshop recordings. NDSC’s Policy & Advocacy Team invites you to attend the NDSC Advocacy Training Boot Camp, a free event for all Convention from Your Couch registrants. Aimed at beginner advocates this two-hour LIVE session, to be held on Saturday, June 27, from 1:00 PM ET – 3:00 PM ET will feature presentations from effective self-advocates, parent advocates, and the expert NDSC Policy & Advocacy Team. Learn what advocacy is, the basics of the legislative process, how to engage and build relationships with elected officials, and how to utilize social media in your advocacy efforts.  You will also receive other important resources and tips all from the comfort of your own home. We hope to “see” you there!

Federal Coronavirus (COVID-19) Legislation Update

The Coronavirus (COVID-19) pandemic has been the main focus of legislative efforts in Congress. As of May 18, there have been three major Coronavirus bills signed into law, with a fourth bill being passed by the House of Representatives.

  • 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.  It addresses issues such as paid sick leave for parents with children under the age of 18 who, 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 (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.
  • Congress also passed the Paycheck Protection Program and Heath Care Enhancement Act on April 24, 2020, to refill the CARES Act’s Paycheck Protection Program and provide more funds for small business loans, health care, and COVID-19 testing.

These bills contained some positive provisions for the disability community but did not do enough to address our major priorities. Specifically, the first three major COVID-19 bills did not provide adequate funding for Home & Community-Based Services through Medicaid, nor did it specifically earmark funds for special education provided under the Individuals with Disabilities Education Act (IDEA). Our colleagues at the Center for Public Representation have provided a detailed analysis of the disability community’s priorities, as addressed in the first three major COVID-19 bills enacted.

Fourth COVID-19 Bill Passes the House: the HEROES Act

A fourth major COVID-19 bill, known as the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act (H.R. 6800), just passed the House of Representatives on May 15. A summary of the $3 trillion HEROES Act is available here. This bill includes many of the disability community’s most important priorities, including additional funding for HCBS, Medicaid, housing programs, and hazard pay for direct service providers. The bill also includes $90 billion for the State Fiscal Stabilization Fund for education, with 65% to go to K-12 and the remaining to higher education. These funds may be used for special education but are not explicitly earmarked for it. The Center for Public Representation has provided a detailed analysis of this bill. 
The HEROES Act is a step in the right direction towards prioritizing people with disabilities in the next COVID-19 relief package but is not bipartisan and has many hurdles to overcome. Senate leadership has not yet expressed any intention to “take up” this bill, so we need to continue to reach out to our Senators to keep our priorities at the forefront of the agenda. Please use NDSC’s Action Alert to contact your Senators.

IDEA and V.R. Waivers

The third bill, the CARES Act, required the Secretary of Education DeVos to report to Congress if she thinks any waivers are needed to IDEA and several other laws to provide “limited flexibility” during the pandemic. An in-depth NDSC analysis showed that significant flexibility already exists and waivers are not needed. We are pleased that the Secretary’s Report strongly affirmed the rights of students with disabilities and recommended only two waivers.

  • One would allow the extension of the evaluation timeline for children served under Part C (birth to 3) to Part B (3 to 21+) and allow those children to continue to receive services under Part C. It is important that these children continue to receive services; however the funding needs to be worked out.
  • The other is a technical fix that would allow flexibility for Personnel Development Scholars to have an extended time to fulfill employment requirements since schools are closed.

The fourth bill passed by the House, the HEROES Act, did NOT include any IDEA waivers so that IDEA rights would remain intact under this bill. It is important to continue using our action alert to the Senate requesting that they do not waive IDEA. If your Senator(s) are on the Senate HELP Committee or the Senate Leadership please consider setting up a virtual meeting with their staff to urge that they do not waive IDEA. We are happy to assist you.
The Secretary’s Report recommended several waivers to Vocational Rehabilitation (V.R.).

  • The first would allow the “carry over” of current V.R. funds for one year, until September 30, 2021, and is a reasonable request.
  • The second recommends waiving the requirements that:
    • States reserve not less than 15% of funds to provide pre-employment transition services (Pre-ETS) to students with disabilities.
    • States reserve and spend half the supported employment (S.E.) services funds for youth with the most significant disabilities.
    • States provide a 10% non-Federal match for these services to youth with the most significant disabilities.

NDSC opposes the second V.R. waiver request and is working closely with the Collaboration to Promote Self-Determination on this issue. We are particularly concerned that a new Department of Education Report shows that $2.5 million in supported employment funds were not spent in Fiscal Year 2017, indicating underlying problems that need to be addressed.

Extending COVID-19 Stimulus Payments to Adult Dependents
Under the CARES Act, the federal government made payments (called “Recovery Rebates” or “Economic Impact Payments”) available to many people whose adjusted gross income was less than $75,000 for an individual or $150,000 for those married filing jointly. The full payment is $1,200 for individuals and $2,400 for married couples who file jointly. Also available was a $500 supplemental payment per child age 16 or younger. The IRS has already distributed most Economic Impact Payments, to those who qualified.   Payments were transmitted via direct deposit to bank accounts. You can find more information about these payments at www.irs.gov/coronavirus.   
Unfortunately, families with adult dependents with disabilities were excluded from receiving these supplemental payments under the CARES Act. NDSC has been working with other groups and allies on the Hill to expand the limited definition of “dependents” specified in the CARES Act so that more families are eligible to receive payments for dependents over the age of 17.  NDSC is pleased that this expanded definition was included in the HEROES Act, but, as mentioned earlier, the HEROES Act has a long way to go through the legislative process and is unlikely to become law in its current form. NDSC has signed onto an advocacy letter through the Consortium for Citizens with Disabilities, where you can find more information about this issue.

Expanding Flexibility in SNAP Benefits
People with Down syndrome and other disabilities and their families compared to people without disabilities are more likely to experience hunger and food insecurity. The COVID-19 pandemic creates specific issues for people with disabilities when it comes to nutrition assistance as well as the need for self-isolation or quarantine. NDSC supports boosting SNAP benefits and expanding the SNAP Online Purchasing Pilot to ensure that people with disabilities can utilize SNAP benefits to obtain groceries safely while self-isolating. Because of the prevalence of high-risk factors for complications from COVID-19 for people with disabilities, access to online ordering of needed supplies and groceries is critical. NDSC has signed onto a letter through the Consortium for Citizens with Disabilities which outlines our support for several current pieces of legislation to improve SNAP benefits during this pandemic. If you would like to take grassroots action on this issue, please check out these SNAP advocacy resources developed by our colleagues at Respectability.

NDSC Signs Onto Amicus Brief Supporting Affordable Care Act

In the Fall of 2020, the U.S. Supreme Court will hear the case formerly known as Texas v. U.S. and now known as California v. Texas. The case involves a challenge by Texas and other states to the constitutionality of the Affordable Care Act (ACA)’s “individual mandate” to have health insurance. Texas argues that the mandate is unconstitutional and that the entire law must be struck down. Provisions of the Affordable Care Act that are critical to people with disabilities, such as protections for those with pre-existing conditions, Medicaid expansion, and the ability for children under age 26 to stay on their parents’ insurance, hang in the balance.

NDSC signed onto an Amicus Brief prepared by The Bazelon Center, the Disability Rights Education and Defense Fund, the ACLU, and others that were recently filed with the U.S. Supreme Court highlighting the crucial protection provided for people with disabilities under the ACA.

Discrimination in Medical Treatment Rationing

NDSC is extremely concerned about the potential impact on people with disabilities if the government or hospitals make medical rationing decisions in a discriminatory way. We have been working with allies and other stakeholders to push back against many states’ medical rationing plans that violate federal law as discriminatory towards people with disabilities. 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, and complaints against discriminatory rationing policies are being filed with the Office of Civil Rights. For more information on this issue, visit the Center for Public Representation’s website.
NDSC, along with the Global Down Syndrome Foundation and the National Down Syndrome Society, hosted a webinar on this topic. NDSC Policy Director, Heather Sachs, also spoke about this issue, as well as hospital visitor policies, on a podcast hosted by Dr. Kishore Vellody, NDSC Board President and Medical Director of the University of Pittsburgh Medical Center Children’s’ Hospital Down Syndrome Center. We will continue to stay engaged in this issue to make sure that people with Down syndrome and other disabilities are treated equitably in health crisis situations.
Hospital Visitation Policies
Many hospitals have put a “no visitors” policy in place during the COVID pandemic. This is very concerning as many people with Down syndrome and other disabilities require a parent or other support person with them in the hospital for equal access. The Health and Human Services’ Office of Civil Rights guidance on medical rationing makes clear that states and hospitals have legal requirements to provide reasonable accommodations to ensure people with disabilities have equal access to medical care. NDSC has signed onto a letter asking governors to issue guidance for their states’ hospitals. To assist stakeholders in evaluating their state or individual hospital visitor policies, several disability advocacy groups have put together this Evaluation Framework for Hospital Visitor Policies. Advocates are working state-by-state to analyze individual hospital visitation policies and make modifications to allow for the accommodation of a support person in the hospital. We encourage you to connect with your state’s Protection & Advocacy (P&A) organization for information about the status of this issue in your state and whether you can help advocate for changes to overly restrictive policies. You can find your state’s P&A organization here.

Postsecondary Education

If you are interested in postsecondary education for students with intellectual disabilities (I.D.), now is your chance to contact community colleges, colleges, and universities near you to encourage them to apply for a TPSID grant.  The TPSID grant will be used to develop or expand a model postsecondary program for students with I.D. The grant application announcement may be found here.
If you are a student, family member, or staff for one of these programs, you can access a helpful resource: Teaching and Learning Online: Strategies for Supporting Students with I.D. provided by Think College.

NDSC Resource for State/Local Education Funding Advocacy

NDSC and The Advocacy Institute collaborated on a resource to help families advocate for COVID-19 related education funding to be used to benefit students with disabilities.

So far, additional funding for education has not included dedicated funding for IDEA, although there is language stating that funding should be used for all students, including students with disabilities. More advocacy is required at the state and local levels to ensure students with disabilities benefit in a meaningful way from the additional funding. NDSC continues to advocate for IDEA funding to be included in the next COVID-19 bill.