Policy & Advocacy Newsline ~ March 26, 2019

NDSC Senior Policy Advisor, Stephanie Smith Lee, Speaks in Trinidad and Tobago for World Down Syndrome Day Conference

NDSC Senior Policy Advisor, Stephanie Smith Lee, spoke in Trinidad and Tobago last week at the UN World Down Syndrome Day Conference. The conference is hosted in part by one of our NDAC Group members, Down Syndrome Family Network.

Stephanie spoke at the U.S. Embassy in Trinidad and Tobago on WDSD to Embassy staff, the media, and non-profit organizations about policy advocacy to create inclusive schools and the lessons learned in the US about how to create truly inclusive schools.  As a featured speaker, she shared her knowledge of the lessons learned in the U.S. about inclusive education and the key role of family and self-advocates in creating positive change. Listen to one of her speeches HERE.

Employment Policy Update

NDSC continues to prioritize employment policy issues for people with Down syndrome and other disabilities. Much of NDSC’s work on employment policy is with the Collaboration to Promote Self-Determination (more info HERE), a coalition of national groups whose mission is to push for major systemic reform of the nation’s disability laws and programs to advance economic security, enhance integrated community participation, and increase opportunities for people with disabilities so that they are able to lead self-determined lives.
NDSC advocates for laws and policies that align with its position statement on employment (view HERE).

Transformation to Competitive Employment Act

NDSC is one of the groups leading the effort to pass the Transformation to Competitive Employment Act (H.R. 873/S.260).  Recently introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation will address barriers to employment and expand opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period. You can find a two-page document about this bill on the Collaboration to Promote Self-Determination website HERE.

Passing this bill is one of our top priorities, but we can’t do it without your help! We are asking you to contact your Senators and Representatives and ask them to sign onto this bill as cosponsors. You can use the NDSC Action Alert HERE.

WIOA Definition of “Competitive Integrated Employment” At-Risk

One of NDSC’s employment priorities is to retain certain key aspects of the Workforce Innovation Opportunity Act (WIOA) law, especially the definition of “competitive integrated employment” (CIE). WIOA defines CIE as work at or above minimum wage, with wages & benefits comparable to, and fully integrated with, co-workers without disabilities. This definition was the result of robust discussions among all stakeholders and has become settled law. Unfortunately, the Department of Education has indicated that it will likely re-open the regulation governing the definition of CIE. When a regulation is “re-opened”, that means that the Department of Education is considering amending it. The public is required to be given notice and the opportunity to comment on potential changes.

NDSC and our allies have been meeting with the Department of Education and sending letters urging them not to re-open the CIE regulations with explanations of why this action would be harmful. (See the most recent letter HERE) Despite our efforts, we are expecting the Department of Education to re-open the CIE regulations any week now. If that happens, we will all need to mobilize to provide comments to the Department of Education to oppose the weakening of the CIE definition.  We will send an Action Alert with all of the information you need to submit comments to the Department of Education to oppose these changes. Please be sure to sign up for NDSC Action Alerts so you get this information HERE.

Money Follows the Person

We are pleased to share that earlier this week, the House of Representatives voted YES on HR 1839, a bill to give the Money Follows the Person (MFP) program an extra $20 million dollars to extend its operations through the fall, pending a longer-term agreement (view press release HERE). The bill now heads to the Senate, where we will advocate for its swift passage.

NDSC has been advocating for additional funding for 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 (See HERE for more details).

NDSC will continue to advocate for a longer extension and improvement of MFP through the EMPOWER Care Act (S. 548/ HR 1372) or another legislative vehicle. NDSC has signed onto a letter of support for the EMPOWER Care Act (View HERE) and recently pushed out an Action Alert for the EMPOWER Act: For more details click HERE. Please contact your Senators and Representatives and ask them to cosponsor the EMPOWER Care Act to reauthorize and improve MFP.

Autism CARES Reauthorization

It is estimated that between 18-39% of individuals with Down syndrome are also on the Autism spectrum. Given this prevalence, NDSC has joined with many national groups to advocate for the reauthorization of the Autism Collaboration, Accountability, Research, Education and Support Act (also known as the Autism CARES Act). The current Autism CARES Act, 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).  Last month, Senators Bob Menendez (D-N.J.) and Michael Enzi (R-Wyo.) and Representatives Chris Smith (R-N.J.) and Mike Doyle (D-Pa.) introduced legislation to reauthorize the Autism CARES Act (S. 427/H.R. 1058). NDSC is supporting this legislation and will be advocating for its passage as soon as possible so that the funding does not expire. For information about the co-occurrence of Down syndrome and autism, please see the DS-ASD Connection at HERE.  For more information about the Autism CARES bill and resources to help with your advocacy for the bill’s passage, please see The Autism Society of America’s page HERE.

ABLE Age Adjustment Act

NDSC continues to be active in the effort to implement and expand the Achieving a Better Life Experience (ABLE) Act of 2014, which enables people with Down syndrome and other disabilities to open tax-exempt accounts to save for their future without jeopardizing their much-needed public benefits. To date, there are forty-two ABLE programs around the country (41 states plus the District of Columbia). Many of these programs are open to qualified individuals nationwide and offer additional benefits like state income tax deductions. Please see the ABLE National Resource Center (ANRC) for information concerning ABLE, www.ablenrc.org. ANRC offers a wealth of information about ABLE accounts and free monthly webinars on various ABLE-related topics.

The ABLE Age Adjustment Act (S. 651/HR to be determined) was recently introduced by Senators Casey (D-PA), Moran (R-KS), Van Hollen (D-MD), and Roberts (R-KS), as well as Representatives Cardenas (D-CA) and McMorris-Rodgers (R-WA). This bill amends the ABLE Act to expand eligibility to anyone who has acquired a disability prior to age 46 (currently it is age 26). The ABLE Age Adjustment Act will allow over six million additional people with disabilities to be eligible for the ABLE program, including one million veterans with disabilities. It will also bolster the sustainability of ABLE programs nationwide. NDSC supports this bill and has signed onto a letter of support for this bill, view HERE. We will be sending an Action Alert on this bill in the near future.

Seclusion & Restraints

Restraints and seclusion are disproportionately used toward students with disabilities and often result in harm to students and teachers. Recently, the House Early Childhood, Elementary and Secondary Education Subcommittee held a hearing examining the use of restraint and seclusion in schools. This hearing laid the groundwork for a bill, Keeping All Students Safe Act (KASSA), which is expected to be introduced in Congress shortly. NDSC recently signed onto a letter to Congress encouraging them to introduce this legislation, view it HERE.

To watch the hearing or review the testimony, see HERE.

KASSA will prohibit seclusion, limit physical restraint to true emergencies, and encourage the use of de-escalation techniques, conflict management and evidence-based positive behavior supports and interventions. For more information about this issue, please see HERE. NDSC will keep you updated as KASSA is introduced.

Higher Education Act Reauthorization Update

The 2008 reauthorization of the Higher Education Act (HEA) of 1965 contained several important provisions that make postsecondary education more accessible and affordable for students with disabilities, particularly intellectual disabilities. Among other positive reforms, HEA created new comprehensive transition and postsecondary programs and provided access to federal student aid. (You can find more information about postsecondary programs for students with intellectual disabilities at www.thinkcollege.net) This bill is due to be reauthorized, and Republican and Democratic staff on the Senate HELP Committee are meeting now to negotiate a bill for reauthorization this session.

NDSC’s Senior Policy Advisor, Stephanie Smith Lee, co-chairs the Inclusive Higher Education Committee (IHEC) and is leading the advocacy effort to retain and improve the parts of HEA that authorize financial aid, model programs, and a National Coordinating Center for postsecondary students with intellectual disabilities. Stephanie and Madeleine Will, NDSC Public Policy Advisory Council member, recently met with senior Congressional staff, US Department of Education Office of Special Education Director Laurie VanderPloeg and Assistant Secretary Johnny Collet on postsecondary matters. We will keep you updated as the negotiations for the reauthorization continue to progress and a bill is introduced.

Advocacy Training Boot Camp at the NDSC Convention

Thursday, June 27, 2019

8 a.m. – 12 p.m.

  • Designed to be an Advocacy 101 mini-course
  • Defining advocacy
  • Overview of basic government processes (state vs. federal, appropriations)
  • Discussion on how to effectively engage with legislators
  • Hear from panels of advocates (including self-advocates) will share their tips and experiences

Hear from NDAC member, Julie Rothholz, about her experience in advocacy and more about the Boot Camp, click HERE to read more.

Free to Convention attendees! Conference registration is now open, be sure to register!

NDSC Convention –June 27-30, 2019, in Pittsburgh, PA

Want D.C.-Based Advocacy Training? Attend the Disability Policy Seminar!

NDSC is a promotional partner for the Disability Policy Seminar (DPS). The DPS is a three- day annual federal legislative conference co-sponsored by The Arc, AAIDD, AUCD, NACDD, UCP, and SABE. The purpose of the DPS is to strengthen federal advocacy efforts by having people from around the country come to D.C., receive training and updates, and visit their Members of Congress. The DPS helps promotes unity, strengthens movement building, and amplifies the concerns of people with intellectual and developmental disabilities before Congress. The 2019 Disability Policy Seminar is April 8-10, at the Renaissance Hotel, Washington D.C.

New Resources on Inclusive Education for Students with Significant Cognitive Disabilities

NDSC Senor Education Policy Advisor, Ricki Sabia, contributed to the first article in a magazine issue dedicated to inclusion for students with significant cognitive disabilities. The IMPACT Magazine is published by the University of Minnesota’s Institute on Community Integration. You can read the inclusion issue HERE.

Every Student Succeeds Act (ESSA) Funding Guidance

NDSC, along with other members of The Leadership Conference on Civil and Human Rights, submitted comments on the proposed ESSA funding guidance released by the U.S. Department of Education. There is concern that the proposed guidance would not ensure that schools with greater need get the resources and funding necessary to provide equitable learning environments for all students. The letter is HERE. The Department’s proposed guidance is HERE.

Principal Inclusive Leadership Initiative and Guide

The Council of Chief State School Officers (CCSSO) has launched an effort with five states that is aimed at improving principals’ knowledge of supporting students with disabilities.
The Advancing Inclusive Principal Leadership State Initiative is working with Arkansas, Colorado, Georgia, Mississippi, and Ohio. Partners in the effort include the federally-funded CEEDAR Center (Collaboration on Effective Educator Development, Accountability, and Reform) and the Oak Foundation, a philanthropy that supports students with learning differences. CCSSO has also published a Guide for Principals on supporting inclusive schools HERE.

Disability Advocates Prevail in Court Decision on IDEA Significant Disproportionality Regulations

On March 7, 2019, the U.S. District Court for the District of Columbia, in a court case filed by the Council of Parent Attorneys and Advocates (COPAA), found that the U.S. Department of Education (the Department) had engaged in an ‘illegal delay’ of the 2016 Equity in IDEA regulations. Those regulations, which were supposed to go into effect on July 1, 2018, implement the Individuals with Disabilities Education Act (IDEA) requirements relating to significant racial disproportionality (e.g. more frequent identification as a student with a disability, more frequent and harsher discipline, and more restrictive placements). The federal court’s ruling requires those 2016 final regulations to immediately go into effect. In 2018 NDSC submitted comments to the Department opposing the delay of these regulations. See the court decision HERE and the NDSC letter HERE. An article by the Former Assistant Secretary of the Office of Special Education and Rehabilitative Services. Michel Yudin, explains why this ruling is so important, view it HERE.

States requesting Extended Waivers of the ESSA 1% Cap on Participation in Alternate Assessments

ID, LA, OK, OH, KY, AR, DE, GA, MA, NE, TN, TX, WV. IN, NC, and MI have all requested extensions of their 1% cap waivers. So far ID, LA, KY, AR, DE, MA, and NE have been approved. In addition, IL, RI, and DC have requested a waiver for the first time. These waivers allow the states to include more than 1% of all students (approximately 10% of students with disabilities) in the states’ alternate assessments. Advocates fought for this cap because when too many students are being tested using alternate assessments, the results do not provide accurate data on student achievement and expectations are not being held as high as they should be. Alternate assessments are supposed to be aligned with grade-level content but the expectation for achievement on that content is different than in the regular assessments.  If your state has been granted a new waiver or an extension it is important to make sure the document that was submitted to the Department for approval is publicly available. It will tell you what steps your state has promised to take to bring participation down below the cap in the future. For the latest information on waivers, click HERE.

President’s 2020 Education Budget

President Trump released his proposed 2020 budget earlier this month. The President has proposed a 10% cut to the overall education budget. There are no proposed cuts to IDEA, Title I funding (for disadvantaged students), or model programs for students with intellectual disabilities, but without consideration for inflation, this “level funding” is considered as having the impact of a cut.

The largest proposed cuts to K-12 education (Every Student Succeeds Act funding) are repeats from past years’ budget proposals: $2.1 billion in Title II grants for programs to improve teaching and leadership through professional learning at the state and district levels 21st Century Learning Center after-school programs, and Title IV grants that provide for everything from arts education to technology. Also, the budget proposes to eliminate funding for comprehensive literacy instruction grants. This section of ESSA contains a requirement to incorporate Universal Design for Learning across subject areas as part of the definition of comprehensive literacy instruction. There is some funding proposed for teacher training through a competitive grant program that would allow teachers to select their own training options. The largest proposed new investments are focused on school choice and school safety. For more details, you can read articles HERE and HERE.

Unfortunately, many other spending programs that benefit people with disabilities will be negatively impacted by the President’s Budget. For a detailed analysis of these cuts, please please see the article prepared by our colleagues at The Autism Society HERE.

Want to See More of our Advocacy in Action?


Sign up to receive our timely, accurate information from the NDSC Policy & Advocacy Team and magnify your voice. Signing up is free and takes less than one minute – simply provide your name, email, address, and zip code. NDSC will not share your personal information and will use it for advocacy communication purposes only.

NDAC – Learn More & Join

The National Down Syndrome Advocacy Coalition (NDAC) is a grassroots advocacy service that is designed to educate individuals with Down syndrome, their family members and other allies about policy issues and give them the advocacy tools and techniques they need to effectively engage with their legislators to advocate for change.

Like the NDSC Policy & Advocacy Facebook page and follow NDSC Policy & Advocacy on Twitter @policyupdates

If you like what you see, please consider making a donation to help us further our Policy Team goals.

Donate and put “Policy” in the Comments section. Thank you!