Policy & Advocacy Newsline ~ March 13, 2020

Inclusion of People with Disabilities in COVID-19 Coronavirus Policy and Plans

The COVID-19 coronavirus pandemic not only threatens the health of people with Down syndrome and other disabilities; it threatens their rights and independence across many areas, such as education, independent living, employment, transportation, housing, and even basic day-to-day activities. NDSC, through the Consortium for Citizens with Disabilities (CCD) and our other partnerships and alliances, has been working with legislators on Capitol Hill to make sure that the rights and needs of people with disabilities are included in any legislation addressing the current public health crisis and future crises. Legislation is rapidly evolving and Congress and the Administration are moving quickly. Federal agencies such as the Department of Education and the Center for Medicaid & Medicare Services (CMS) have already issued guidance about providing services to people with disabilities during this outbreak.

NDSC is part of the CCD Emergency Preparedness Task Force and has signed onto this National Call to Action from the Partnership for Inclusive Disaster Strategies, a coalition of experts on disability rights, accessibility and inclusion throughout all phases of disaster operations. We will keep you updated about policy issues relating to COVID-19 and let you know if advocacy from the community is needed.

Disability Policy Seminar in Washington, D.C. has Been Canceled

The 2020 Disability Policy Seminar (DPS), originally scheduled to take place in Washington, D.C., on March 23-25, 2020, has been canceled. NDSC, along with its DPS partners The Arc, AUCD, AAIDD, NACDD, SABE, the Autism Society, and UCP, recognize all of the hard work that so many have put into preparing for DPS and the critical importance of bringing the voices of the disability community to Washington. Unfortunately, the evolving circumstances, which include the World Health Organization declaration of a global pandemic, announcements of travel bans, quarantines make it clear that it would be an unacceptable risk to bring so many people together this month. DPS organizers will be in touch with DPS registrants regarding possible alternate dates and/or virtual advocacy opportunities.

Direct Support Professionals

A bipartisan bill, Recognizing the Role of Direct Support Professionals Act (S. 3369/H.R. 6045), has been introduced in both the House and Senate. This bill would create a separate code for Direct Support Professionals (DSPs) under the Office of Management and Budget. This separate code would allow states and the federal government to collect more accurate data to address the high turnover rate and extreme shortages of DSPs. NDSC has signed onto a letter supporting this bill as a step to mitigating the DSP workforce crisis.

Other bills to address the DPS workforce crisis that NDSC is supporting are:

  • The Direct Creation, Advancement, and Retention of Employment (CARE) Opportunity Act (H.R. 4397), which invests in training and employment advancement opportunities for DSPs.
  • The Ensuring Access to Direct Support Professionals (S. 3220) and the Isaiah Baker and Margie Harris-Austin Act (H.R. 5443), both of which would provide Medicaid coverage for services from DSPs while a patient whom a DSP is supporting is in the hospital.

Electric Shock Devices Banned by the Food & Drug Administration

The U.S. Food & Drug Administration (FDA) has finalized a rule prohibiting the use of electrical stimulation devices (ESDs). These devices have been used for decades by the Judge Rotenberg Educational Center (JRC) in Massachusetts to inflict painful electric shocks on its residents with intellectual and developmental disabilities as a way to punish aggression and perceived misbehavior. Disability advocates have been working for years to abolish this inhumane treatment, and the FDA has finally issued a final rule banning these devices.

Public Charge Rule is in Effect

On February 24th, 2020, the public charge rule went into effect. Issued by the Department of Homeland Security, this rule will allow the government to deny admission to the U.S. or to deny lawful permanent resident status (i.e., a green card) to people with disabilities and may discourage those already in the U.S. from using critical public benefits, including Medicaid-funded home and community-based services. You can learn more about the public charge rule here. Although the rule is now in effect, efforts to overturn it through litigation continue. We will keep you informed of any relevant court decisions.

Key Affordable Care Act Case Going to U.S. Supreme Court

The Supreme Court has granted certiorari in the Affordable Care Act case, formerly known as Texas v. US and now known as California v. Texas, to determine whether or not the Affordable Care Act is unconstitutional. A decision is not expected until next year because the Court declined to expedite the process and hear the case during this term. You can learn more about this case, including media and resources, and the latest updates by visiting the Center for Public Representation website.

Video about Inclusion Advocacy Resources for Students with Significant Cognitive Disabilities

Charmaine Thaner hosts a Facebook live show on her page Visions and Voices Together. On February 27th, she invited NDSC Senior Policy Advisor, Ricki Sabia, to speak about her role as parent liaison for TIES Center on Inclusive Practices and Policies. Ricki’s presentation focused on the advocacy resources she has co-authored for parents to help them address the many myths and obstacles regarding inclusion for students with significant cognitive disabilities. If you missed the live Facebook event you can watch the video in the Visions and Voices Together archived videos library. 

State LRE Data

Data that reports, by state, where students with intellectual disabilities (I.D.)  were educated during the 2018-19 school year has been released. We have provided a chart on our website with this I.D. data listed for each state. The national average shows that only 17% of students in the I.D. category are educated 80% or more of time in general education classrooms, with almost half of these students being educated in the general education class less than 40% of the day. We know from studies that the numbers are far worse for students who take alternate assessments (about 3% inclusion rate for 80% or more of the day).

It is particularly important to advocate in the states that fall below the national average. In the coming weeks, states will release, on their websites, their State Performance Plan (SPP) applications, for public comment, before submitting them to the U.S. Department of Education in May. The SPP evaluates the state’s efforts to implement the requirements and purposes of IDEA. We encourage you to comment on the poor data for inclusion of students with I.D. and ask your state what their plans are to address this issue. We understand that states must submit all public comments with their applications. A brief that contains information about the use of LRE data to improve inclusion can be found here. For information on how the LRE provisions in IDEA are interpreted in your state, see the report by the TIES Center.

Update on State Waivers to Exceed the 1% Testing Cap for Alternate Assessments

The Every Student Succeeds Act includes a requirement that states only test 1% of all students (equals approximately 10% of students with disabilities) using the alternate assessment. This was in response to the practice of pushing too many students, including those with Down syndrome, into the alternate assessment who did not meet the criteria. The Advocacy Institute has been tracking the waiver requests to exceed the cap and the U.S. Department of Education’s (E.D.’s) response. A table posted on The Advocacy Institute website provides information by state on the one percent cap on Alternate Assessments imposed by ESSA and all state info/links to E.D. letters for all years.

Below is additional information from the Advocacy Institute:

  • Requests for one-year waiver extensions have been submitted and are pending action by E.D. for the following states (5): WV, RI, MI, NC, TN.
  • One-year waiver extension requests have been approved for the following states (8): AL, AR, GA, HI, KY, MA, OH, OK.
  • One-year waiver extension requests have been denied for the following states (3): DE, LA, TX (due to failure to show progress)
  • First-time waiver requests have been submitted and are pending action by E.D. (3): MD, VA, VT
  • First-time waivers have been approved for the following states (3): FL, IL, KS
  • The following states have received policy letters from USED notifying them of their continued non-compliance with the 1% cap and the action they are required to take (7): CA, CT, MN, NJ, NY, OR, PA. Two of these states (MN, NJ) received warning of additional enforcement actions regarding this non-compliance, such as placing their State Title I, Part A grant award on the high-risk status if progress is not made.

Waiver letters and Policy letters (see Alternate Assessments of Alternate Academic Achievement Standards Participation Rate Letters) can be found on the Department of Education website.


2020 College Fair Banner

NDSC will hold our second College Fair on June 26th, at the 48th Annual NDSC Convention in New Orleans. This event is a collaboration with Think College and will be an excellent opportunity for self-advocates and families to meet college representatives to learn more about postsecondary programs for students with intellectual disability. No additional fees or registration are required for registered NDSC Convention guests to attend.

We invite all colleges, community colleges, and universities to register below to participate in the event. A flyer with event details can be downloaded and shared.