Policy & Advocacy Newsline ~ July 2020

We Need Your Advocacy Help for 4th COVID-19 Relief Package

After passing three large packages and several smaller bills to address the Coronavirus pandemic, the Senate is negotiating terms for the fourth COVID-19 relief bill. The House passed its 4th COVID-19 Relief Package in May, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act (H.R.6800), which contained many positive provisions for people with disabilities. Unfortunately, the HEROES Act is considered by the Senate majority to be a very partisan bill, so the Senate will be drafting its own COVID-19 Relief Bill instead of taking up the HEROES Act as a starting point for negotiations.

You can help by contacting your Senators this week to ask them to include the needs of people with disabilities, which have been largely unmet in the next COVID-19 Relief Bill. In the COVID-19 bills enacted to date, there has been zero increased federal funding for home and community-based services (HCBS) under Medicaid. Dedicated HCBS funding is essential to making sure that people with disabilities can remain in their homes, get the services they need, and ensuring that home health workers, direct service workers, and personal care attendants have the resources they need to support people with disabilities in their homes. Unfortunately, some service providers are on the verge of collapse due to the COVID-19 pandemic, and they desperately need this funding.

We have emphasized to the Senate that waivers under the Individuals with Disabilities Education Act (IDEA) are not warranted, but that additional and dedicated funding for IDEA is much needed. Additionally, we are advocating for expanded eligibility for economic impact payments to adult dependents.

NDSC has put out a new Action Alert identifying these priorities and providing talking points. We encourage you to reach out to your Senators immediately, as these negotiations are happening right now.

HCBS Settings Rule Implementation Delayed

On July 14, the Center for Medicare and Medicaid Services (CMS) issued guidance announcing another delay in the timeline for states to fully implement the Home and Community Based Services (HCBS) Settings Rule, extending the deadline by one year to March 2023. This comes after CMS had previously extended the original March 2019 deadline by three years to March 2022. The HCBS Settings Rule is critical to providing basic protections for people with disabilities and aging adults who receive Medicaid-funded HCBS and ensuring that everyone receiving HCBS can experience the full benefits of community living. The HCBS Advocacy Coalition, of which NDSC is a member, released a statement opposing the delay of this rule. You can find more information about the HCBS Settings Rule on the HCBS Advocacy Coalition website.

Administration Files with U.S. Supreme Court to Overturn Affordable Care Act

On June 25, 2020, the Trump Administration filed a brief with the U.S. Supreme Court in the cases State of California, et al., v. State of Texas, et al. (19-840) and State of Texas, et al., v. State of California, et al. (19-1019) asking the Supreme Court to overturn the Affordable Care Act (ACA) in its entirety. These cases have been ongoing since 2018 when a Texas federal judge struck down the ACA as unconstitutional after Congress eliminated the individual mandate for health insurance. For an explanation of the legal arguments and history of this case, see here. The Supreme Court is likely to hear the case in the Fall.

Eliminating the ACA would end medical insurance for more than 20 million Americans. It would be devastating for the disability community, as it would end the provision prohibiting insurance companies from denying coverage based on pre-existing conditions. NDSC signed onto an Amicus Brief prepared by The Bazelon Center, the Disability Rights Education and Defense Fund, the ACLU, and others that was filed with the .S.U.S. Supreme Court in this case highlighting the crucial protection provided for people with disabilities under the ACA.

Hospital Visitor Policies During COVID-19

Many hospitals have “no visitors” policies in place during the COVID-19 pandemic. This is very concerning as many people with Down syndrome and other disabilities need a parent or other support person with them in the hospital for equal access

Supporting this argument for equal access, the U.S. Department of Health & Human Services recently announced a resolution affirming that federal law requires hospitals and state agencies to modify their policies to ensure that patients with disabilities be permitted to have a support person with them if hospitalized during the COVID-19 pandemic. This resolution addressed a complaint against the State of Connecticut filed by several national disability organizations alleging that denial of in-person supports denies people with disabilities equal access to medical care and effective communication and results in unnecessary harm.

NDSC has created a resource explaining hospital visitation rights based on this ruling, along with suggestions on how to assert these rights if you or a loved one is hospitalized. This document can be found in the NDSC COVID-19 Resource Library on our website and may be downloaded and printed or accessed from a phone if needed.

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 that would devalue the lives of people with Down syndrome and other disabilities. Thanks to advocacy efforts from the disability community, the Office of Civil Rights (OCR) from 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 been closely following this issue and have been filing complaints with OCR on a state-by-state basis as discriminatory policies have come to light. OCR has been weighing in on these complaints very favorably, most recently resolving a complaint against Tennessee hospitals.  A detailed discussion of this issue, along with a complete list of medical rationing complaints that have been filed with the Office of Civil Rights can be found on the Center For Public Representation website.

COMING SOON: School Options Webinar

Tuesday, July 28  ~  1 PM Eastern, REGISTER NOW

As schools prepare for the upcoming year, amid much uncertainty and anxiety, parents are being asked to make decisions now regarding how their child will participate. This webinar will focus on helping parents understand the legal implications of different options, including in-person learning, digital learning, homeschooling, and homebound/home instruction providing ideas on how to maintain certain IDEA rights while maximizing flexibility.

Moderated by NDSC Policy & Advocacy Director, Heather Sachs, with speakers: Andrew Feinstein, Esq. from COPAA and the Feinstein Education Law Group and LaTaasha Byrd, Founder of Countdown to K, Inc.

Convention From Your Couch Follow-Up

The third annual Advocacy Training Boot Camp was held on June 27, with over 300 advocates attending from across the country. Sessions included presentations on the legislative process, engaging with elected officials, how to advocate locally, state coalition, and self-advocate tips. Rachel Mast, one of the presenters, said, “I love helping at the Advocacy Training Boot Camp! It made me proud.”  One participant stated, “This was very informative for me as a beginner advocate- I feel much more prepared to start my advocacy journey.”

Session handouts, presentations, and more advocacy resources can be found here.

TIES Center Webisode on Multi-Tiered Systems of Support for Students with Significant Cognitive Disabilities

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. A new TIES resource of interest is a webisode called Multi-Tiered Systems of Support for ALL: Including Students with Significant Cognitive Disabilities. This webisode can be found on the Council of Chief State School Officers (CCSSO) website.  When asked, enter the password: 2F!F4*n6 to access the webisode.

To stay updated on new TIES resources, follow TIES Center on Facebook. 

New Website Providing Resources for Equity and School Reopening

NDSC is a proud partner of the Educating All Learner Alliance (EALA). EALA is excited to share the launch of a new microsite, equityatthecore.org, which provides resources and support to administrators as they prioritize inclusion and equity in the planning process for school reopening.

NDSC Submits Comments Opposing Waivers of IDEA Requirements in Paperwork Reduction Pilot

The Office of Special Education and Rehabilitative Services (OSERS) sought public comments last month on a proposal that would provide grants to states for the purposes of waiving certain IDEA paperwork requirements. Although there is language in the proposal protecting the requirement that students receive a Free, Appropriate, Public Education (FAPE), disability groups are concerned about how this program would be implemented. NDSC submitted comments that you can read here.

IDEA Funding Bill Introduced by Senators Hassan, Murphy and Van Hollen

The Supporting Children with Disabilities during COVID-19 Act would appropriate $11 billion for state grants under IDEA, $900 million for early childhood education programs, $300 million for personnel development, as well as provide $55 million under the Assistive Technology (AT) Act to help address the increased need for assistive technology. This bill is unlikely to be passed as a standalone bill, but disability groups are advocating for its inclusion in a broader COVID-19 funding bill. The text of the bill is here.  NDSC signed on to disability coalition letter about this bill. 

OSEP’s IDEA Q&A Documents on COVID-19

The Office of Special Education Programs (OSEP) has recently issued a number of Question and Answer (Q&A) documents in response to inquiries concerning the implementation of the Individuals with Disabilities Education Act (IDEA) during the  COVID-19 pandemic (Part C covers birth-age 3 and IDEA Part B covers ages 3-21+). They can be found at the links below as well as on the U.S. IDEA. Department of Education’s COVID-19 resources. https://www.ed.gov/coronavirus/program-information#elsec.

IDEA Part C Evaluation and Assessment Timelines in the COVID-19 Environment (July 6, 2020)

IDEA Part B Procedural Safeguards in the COVID-19 environment (June 30, 2020)

IDEA Part C Procedural Safeguards in the COVID-19 environment (June 30, 2020)

IDEA Part B Use of Funds in COVID-19 Environment Q&A Documents (June 26, 2020)

IDEA Part C Use of Funds in COVID-19 Environment Q&A Documents (June 26, 2020)

Flexibility in Implementation of IDEA Part B Fiscal Requirements (June 26, 2020)

2020 Annual Determinations: Has Your State Met IDEA Requirements?

The U.S. Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) recently released its annual determinations on state implementation of IDEA for the 2018-19 school year.  You can see whether your state meets requirements, needs assistance, or needs intervention by reading the fact sheet.  Individual state letters can be found at https://sites.ed.gov/idea/spp-apr-letters.  The data displays on which the determinations are based have not yet been posted, but will eventually be found at https://osep.grads360.org/#report/apr/publicView

You may not agree with the determination for your state because of the limited indicators OSERS uses for the annual determinations under the process called Results Driven Accountability (RDA). For example, least restrictive environment has never been a focus of these annual determinations, in spite of consistent advocacy by NDSC to add LRE as a component. Also, participation and performance on the National Assessment of Educational Progress  (NAEP) is an important component of the determination, even though NDSC has often pointed out to OSERS that students who take alternate assessments are not included in this assessment. You can see the most recent letter NDSC submitted to OSERS on this topic here.

COPAA Resources on School Reopening

COPAA has released two resources on issues pertaining to school reopening. One document is a position statement on the provision of compensatory education. The other document offers recommendations on the provision of a free, appropriate, public education (FAPE) when parents opt to keep their child with a disability home during the 2020-21 school year.

Guide for Districts to Select and Implement Inclusive Technology During COVID-19

Eleven organizations collaborated on the development of a district guide for selecting and implementing education technology to benefit students with disabilities during the COVID-19 crisis. The guide called “Inclusive Technology During the COVID-19 Crisis” names key stakeholders who should be involved in decisions and provides guiding questions for district leaders.

Equity Tracker Resource for School Reopening

Johns Hopkins University has developed an analysis of school reopening plans in each state. There are 12 factors that are part of the analysis.