Policy & Advocacy Newsline ~ July 22, 2019

NDSC is Working Hard to Protect LRE (Least Restrictive Environment)

Last week, NDSC received word that the US Department of Education (ED) was planning to release guidance in the immediate future that would likely make it more difficult than it already is for children with disabilities to be educated in the least restrictive environment (LRE) under the Individuals with Disabilities Education Act (IDEA). Immediately, the NDSC Policy Team and members of the NDSC Policy Council began to take action to protect the legal presumption in IDEA that all children with disabilities will be educated in the general education classroom; except in the rare circumstance that the child cannot get a satisfactory education in that environment even with the provision of supplementary aids and services.

We began working through high-level bipartisan channels to obtain more information and express our deep concerns and strong opposition to any weakening of the rights of children with disabilities to be educated in the least restrictive environment. Over the past few days, NDSC has met directly with OSERS Assistant Secretary, Johnny Collett, as well as with key Republican and Democratic Members of Congress and their senior staffers to try to stop ED from issuing such guidance. NDSC has also been working closely in coalition with other disability and education groups on this issue. We have signed onto a joint statement.

This past Thursday, we were informed in a meeting with senior ED officials that this guidance does not exist, despite credible evidence to the contrary. In any case, we are pleased and relieved that it is not being released. While laws and regulations are binding on states and districts, guidance documents are used to clarify laws and regulations. Any guidance from ED that modifies the interpretation of LRE could have devastating consequences for the inclusion of students with disabilities in general education classrooms. NDSC will continue to advocate with ED and Members of Congress to stop such guidance from being issued in the future.

NDSC is committed to advocating to retain the LRE provision in IDEA and improve its implementation. This civil right has been a part of IDEA since the first version of the law was passed in 1975 and has been strengthened in subsequent reauthorizations. NDSC’s position policy statement on inclusive education is posted on our website.

Autism CARES Reauthorization

NDSC is advocating for the reauthorization of the bipartisan Autism Collaboration, Accountability, Research, Education and Support Act (also known as the Autism CARES Act). The current Autism CARES Act (S. 427/H.R. 1058), set to expire on September 30, 2019, provides $260 million annually to autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). These programs benefit all people with developmental disabilities, including all people with Down syndrome and especially the approximately 18% of people with Down syndrome who have a co-occurrence of autism.
On July 11, the Health Subcommittee of the House Committee on Energy and Commerce unanimously voted to approve the Autism CARES Act (H.R. 1058); it then passed the full House Energy and Commerce Committee for approval on July 17. Time is running out for reauthorization though. Please contact your Members of Congress through our Action Alert and ask them to reauthorize Autism CARES before it expires on September 30!

Lifespan Respite Care Reauthorization Act

NDSC is also advocating for the passage of the Lifespan Respite Care Reauthorization Act (S. 995/ HR 2035), which would reauthorize the Lifespan Respite Care Program to provide grants to states, help build coordinated state lifespan respite systems, help family caregivers pay for respite or find funding sources, encourage development of new and innovative community and faith-based respite opportunities, and trains respite workers and volunteers. On July 17, along with the Autism CARES Act noted above, the House Energy and Commerce Committee voted favorably to advance this bill to the House floor. Click here for more information about this bill and to join advocacy efforts.

Self-Advocate Perspective, Advocacy Boot Camp at the NDSC Convention

Jessie Smart, self-advocate, talks about her experience at the Advocacy Boot Camp. Jessie served on the event planning committee, and was also a panelist who shared her advocacy tips.

“My name is Jessie Smart.  I had the honor of participating in the 2nd Advocacy Training Boot Camp at the National Down Syndrome Congress annual convention. Even though I was a presenter, I learned so much about how to advocate for myself and others.  I learned that you don’t have to “know” everything about advocacy; I learned that we have a wonderful, extremely knowledgeable policy team that will teach you how to advocate; I learned that there are many “silly” outdated policies that are still laws around our country that need to be changed; and much more.

I have been fortunate to be able to travel to Jackson, MS and to be standing beside Governor Bryant as he signed the ABLE Act.  I traveled to Washington, DC to speak to our legislators about issues that are important to our Down syndrome community.  I live in Olive Branch MS and I work at our local Down Syndrome office in Memphis TN. I think most importantly I get out in my local community and speak to teacher groups about inclusion, I speak to Civitan groups about volunteer opportunities, I go to schools and advocate for “dress down days”, I speak to new parent brunches, offering encouragement and education about their new child who has Down syndrome. 
As a presenter at the Advocacy Training Boot Camp, I shared my story and the things I do to advocate for people with disabilities. I learned that our advocacy team offers not only the information you need to be a good self-advocate but the tools to make it happen.  I encourage everyone to use these resources and learn how to be a good advocate.  You can do it!!!”

Annual Convention Highlights from the Policy Team

 Heaather Sachs, Ricki Sabia, Stephanie Lee Smith

  • Over 125 people attended the Advocacy Training Boot Camp. We had awesome panelists and thoughtful questions from participants. A great morning of learning and sharing!
  • U.S. Department of Education Office of Special Education Programs Director, Laurie VanderPloeg, participated in a Town Hall meeting with members of the National Down Syndrome Advocacy Coalition(NDAC). There was great discussion about topics such as inclusion, results-driven accountability, least restrictive environment, diplomas and more.
  • Our Policy Team was busy doing workshops! We presented on a wide variety of topics including What’s Happening in Washington DC, and What You Can Do, and several workshops on higher education and grassroots advocacy.
  • We had great engagement at the “Ask the Experts” sessions at the NDSC table with our Policy team members. Discussion topics included guardianship and alternatives, independent living, postsecondary education programs, employment, DDA services, and Medicaid waivers.
  • Madeleine Will, a member of the NDSC Policy Advisory Council, received the Sig Pueschel NDSC Service Award for her contributions to the Down syndrome community-at-large. Madeleine is the Founder and President of the Collaboration to Promote Self-Determination (CPSD) and a former Assistant Secretary of the Office of Special Education and Rehabilitation Services (OSERS) in the US Department of Education.  Madeleine has led, and continues to lead, successful bipartisan efforts at the local, state and national levels to improve services for children and adults with disabilities. We are so grateful to Madeleine for all of her great advocacy work on behalf of people with Down syndrome and other disabilities!

     2019 Policy at Convention

     2019 Policy Team at Convention

    Brief on Inclusion for Students Taking an Alternate Assessment

    The TIES Center on Inclusion for Students with Significant Cognitive Disabilities has now posted its new parents brief (co-authored by NDSC’s Senior Education Policy Advisor, Ricki Sabia) titled Taking the Alternate Assessment does NOT Mean an Education in a Separate Setting.

    States that are Exceeding the 1% Cap on Participation in Alternate Assessments

    The US Department of Education sent letters to 14 states with consequences for exceeding the 1% cap on the number of students participating in an alternate assessment, instead of a regular assessment, without receiving a waiver of that provision under the Every Student Succeeds Act (ESSA). The states are California, Colorado, Connecticut, Florida, Hawaii, Illinois, Kansas, Maryland, Minnesota, New Jersey, New York, Oregon, Pennsylvania, Virginia. The letters can be found at this webpage. You have to scroll down until you see “Alternate Assessments of Alternate Academic Achievement Standards Participation Rate Letters”  To see whether you state exceeded the 1% cap (with or without a waiver from the U.S. Department of Education) see the chart. The chart also provides information on whether your state failed to assess 95% of students with disabilities. This is another ESSA requirement and states that did not assess 95% of the students with disabilities (in grades being assessed) were not eligible to get a waiver from the 1% cap.

    Annual Determination Whether Your State Met IDEA Requirements

    The 2019 Annual State Determination Letters (for the grant year 2017-18) that describe whether or not your state is meeting IDEA requirements based on their State Performance Plans have now been posted. The fact sheet with the lists of the states that met IDEA requirements or needs assistance or intervention is here.

    For background information on this process, you can read the NDSC brief on IDEA Monitoring and Results Driven Accountability. As you will see from the brief, NDSC has been advocating for different criteria to be used for making these annual determinations in order to better reflect whether states are properly implementing IDEA, especially for students who take alternate assessments.

    Postsecondary Education

    NDSC and Think College sponsored the first-ever College Fair for students with intellectual disabilities at the NDSC Convention in Pittsburgh, and it was a rousing success! The fair was packed with students and families lined up to speak with the twenty-six postsecondary programs and Think College about college opportunities.

    Register before by August 1 to receive a $50 discount for the State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities that will take place November 13 and 14 in Reno, Nevada.  NDSC is a proud cosponsor of this conference that provides an opportunity for students, families, program staff, college faculty, and others to learn from one another and network. Register here for SOTA and the Student Leadership Conference.

     Stephanie Lee Smith speaking

    NDSC Senior Policy Advisor, Stephanie Smith Lee, presented at the TPSID Project Directors Meeting in Boston to the inclusive Higher education model program directors about federal policy, the reauthorization of the Higher Education Act, and the current status of developing model program standards for postsecondary students with intellectual disabilities.

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