Policy & Advocacy Newsline September 23, 2019

Autism CARES Act Passes Senate and Heads to White House!

Great news! On September 19, 2019, the Autism CARES Act of 2019 (H.R. 1058) passed the Senate unanimously and now heads to the President’s desk for signature. Championed by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House and Senators Mike Enzi (R-WY) and Robert Menendez (D-NJ), the bill provides $1.8 billion over five years and will authorize autism-related programs at the National Institutes of Health, the Centers for Disease Control and the Health Resources and Services Administration. 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. NDSC has been advocating for the passage of this bill along with our coalition partners in the disability community. Thank you to all of the advocates who answered our Action Alert and called their Members of Congress!

Money Follows the Person Granted Temporary Funding but Still Seeking Long Term Reauthorization

NDSC has been advocating for additional funding for Money Follows the Person (MFP), a widely adopted and very successful Medicaid program that has helped more than 88,000 people with disabilities and seniors move from nursing homes and other institutions into the community, and has helped 44 states improve access to home and community-based services (HCBS). The success of the MFP program has been widely recognized and documented as effectively moving individuals from institutional to community-based care settings, reducing waiting lists for HCBS services, and saving states money. Click here for more details.

On August 6, President Trump signed into law the Sustaining Excellence in Medicaid Act of 2019 (H.R. 3253), which provides an extension for MFP until the end of 2019. This bill was previously known as the EMPOWER Care Act in the House but was amended to shorten the funding from the proposed 4.5 years to just a few months (until the end of 2019). We need to keep pushing for long-term funding for MFP. The Senate version of EMPOWER Care Act (S.548) is still before the Senate and seeks a longer funding reauthorization. Please use our Action Alert to contact your Senators and urge a longer-term funding solution.

New Guidance Clarifies That IDEA and Vocational Rehabilitation Funding May be Used to Support Students in Postsecondary Programs

NDSC is pleased to share the U.S. Department of Education (ED) announcement of the release of guidance clarifying that IDEA and vocational rehabilitation (VR) funds may be used to support students with intellectual disability (ID) in postsecondary programs. While federal laws intend such funding collaboration, guidance from ED has sometimes been interpreted to deny services and funding. The new guidance is complex and will require an in-depth review. In an initial read, it appears that ED is clear that VR funds may be used to support postsecondary students with ID. The IDEA funding issue is more complicated and appears to require new state guidance or policies to implement.

This new guidance is in response to a comprehensive report, “Addressing the Policy Tangle: Students with Intellectual Disability and the Path to Postsecondary Education, Employment and Community Living“. The report was prepared on behalf of the Inclusive Higher Education Committee. NDSC Senior Policy Advisor, Stephanie Smith Lee, is the Co-Chair of IHEC and the lead author of the report. Co-authors are Madeleine Will, Member of the NDSC Public Policy Advisory Council, and Denise Rozell, AUCD Director of Policy Innovation. The report outlines the legal and policy background of the issue and the need for new guidance to meet the Congressional intent to encourage postsecondary education and competitive, integrated employment for individuals with ID. There are now 275 postsecondary programs for students with ID listed on the Think College database

We appreciate OSERS Assistant Secretary Johnny Collett and OPE Assistant Secretary Robert King spearheading this effort and the Department issuing guidance. We have issued a joint press release with our partners at The Autism Society and the Association of University Centers on DisabilitiesThe NDSC Policy Team will do an in-depth analysis of this new guidance and comment further in the near future.

Model Accreditation Standards for Postsecondary Programs for Students with Intellectual Disability

NDSC Senior Policy Advisor, Stephanie Smith Lee, chaired an all-day in-person meeting of the Accreditation Workgroup in Washington DC on September 11, 2019. This Congressionally-mandated Workgroup focused at the meeting on finalizing model accreditation standards for postsecondary programs for students with intellectual disability (ID).  The Workgroup made good progress on revising the standards and will report to Congress and the Secretary of Education on new recommendations by September 2020.

ABLE Age Adjustment Act Update

NDSC has been advocating for the passage of the ABLE Age Adjustment Act (S. 651H.R. 1814), which would raise the age of onset of disability from 26 to 46 for people with disabilities to have ABLE (Achieving a Better Life Experience) accounts. ABLE accounts are financial tools that are designed to help individuals with disabilities to save and pay for disability-related expenses (like housing, transportation, personal support services, health care costs, etc) without jeopardizing their public benefits. Right now, to open an account, an individual must have a disability that began before the individual turned 26. An increase in this age of onset to 46 would result in six million additional individuals with disabilities becoming eligible to open an ABLE account. This age increase would also enhance the sustainability of some ABLE programs nationwide by boosting the number of accounts opened. Please use our Action Alert to call on your US Representatives and Senators to cosponsor this bill.

New Bill to Improve Supplemental Security Income (SSI) Re-Introduced

On September 11, the Supplemental Security Income (SSI) Restoration Act of 2019 (H.R.4280) was reintroduced by Representative Raul Grijalva (D-AZ) and 20 other co-sponsors. The bill would raise the asset limit, update the earned and unearned income disregard rules, modernize financial eligibility rules and eliminate penalties for resource transfers, marriage, and state tax credits. Congress has not adjusted these limits in many years, and these improvements are long overdue. For more information about this bill, see this policy brief from Justice in Aging. NDSC supports this bill.

Hill Briefing on Competitive Integrated Employment

The Collaboration to Promote Self-Determination (of which NDSC is a founding member and Heather Sachs serves as the Vice President) is co-hosting a briefing with the National Council on Disability entitled “Successes of People with Disabilities Transitioning to Competitive Integrated Employment.” The briefing has bipartisan support and will feature stories of people who have successfully transitioned from sheltered workshops to CIE jobs in the community. The briefing will be held on Monday, October 28, 2019, 10:00 AM – 11:30 AM in the Rayburn House Office Building, Room 2261.  RSVPs are requested from those planning to attend the briefing. Accommodation information is also available.

NDSC to Partner on the 2020 Disability Policy Seminar

NDSC is excited to announce that we are partnering with The Arc, AUCD, AAIDD, NACDD, SABE, UCP and the Autism Society to host the 2020 Disability Policy Seminar, to be held March 23- 25, 2020 in Washington DC. The Disability Policy Seminar offers the opportunity for passionate advocates, self-advocates, experts, and professionals in the field to come together and learn about key issues affecting people with intellectual and developmental disabilities. The event features two days of informative sessions led by experts in the field and offers opportunities for participants to discuss key issues with others from their same state. On the third day, attendees go to Capitol Hill to speak with their legislators.  For more information, please visit the DPS website. We will let you know when registration opens!

NDSC Policy Team on the Road

NDSC Policy Director, Heather Sachs, (below, left) presented two workshops on grassroots advocacy at the Down Syndrome Diagnosis Network retreat in Nashville, TN, Sept 5-7, 2019.


Meeting of Post Secondary Education accreditation workgroup (above, right).

NDSC Policy Team and NDSC Policy Council Members meet to discuss critical policy issues. Pictured above, left to right: Stephanie Smith Lee, Susan Goodman, Heather Sachs, Ricki Sabia, and Madeleine Will.

NDSC to Collaborate with American University Law School on Disability Policy Event

Save the Date 11.4The NDSC Policy team will be hosting an event with the American University Washington College of Law on Monday, November 4, 2019, from 5:30 PM – 8:00 PM. The event, entitled “It’s Never Too Early to Prepare: A Discussion of Pathways to Workforce Readiness and Employment,” will discuss laws and policies that successfully prepare students for the transition to competitive integrated employment from early school age up through adulthood. Speakers will also review the current state of disability employment policy and proposed future changes. It will contain panels of policy experts as well as self-advocates who will discuss their work experiences. Cost to attend is $21 per person, which includes heavy appetizers and a cash bar. If you’re going to be in the Washington D.C. area on November 4, we would love to see you there! Registration is now open.



State Policies on Seclusion and Restraint

Check out this link for a report titled How Safe Is the Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies.

Response to NDSC Recommendations on State IDEA Implementation Survey

The U.S. Department of Education (the Department) requested comments on an upcoming survey for states regarding their implementation of IDEA. NDSC recently received a letter in response from the Department. There were a few changes based on our recommendations, including the addition of questions about state implementation of Universal Design for Learning (UDL).

“Equity in IDEA” Regulation on Significant Disproportionality

The U.S. Department of Justice has dismissed the Department’s appeal of a federal court ruling finding that Education Secretary Betsy DeVos and the Department engaged in an “illegal delay” of the 2016 Equity in IDEA regulation. The March 7, 2019 decision in a lawsuit to stop the delay now stands and the regulation must continue to be implemented. The lawsuit was filed in July of 2018 by the Council of Parent Attorneys and Advocates (COPAA). The regulation was designed to ensure that students with disabilities or of color are protected from over- and under-identification for IDEA services, excessive segregation and harsher discipline than their peers.

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