Policy & Advocacy Newsline ~ December 23, 2019

Happy Holidays from the NDSC Policy Team!

As 2019 comes to a close and we welcome in a new decade, we would like to take this opportunity to thank you for your interest in policy and recognition of its importance. Laws that are passed or regulations that are modified or repealed, on the national and state level, will have an impact on our loved ones with Down syndrome and their families for many years to come. It is our job as the NDSC Policy Team to partner with you, utilize our expertise and experience, leverage our relationships, and collaborate with allies to advocate for equal rights and opportunities for people with Down syndrome. Your involvement at the grassroots level is key. The voices of constituents are the most powerful, and we need you to use yours to help us achieve our policy goals.

Policy is of paramount importance to every aspect of our lives and we thank those of you who have responded to our Action Alerts, joined the National Down Syndrome Advocacy Coalition (NDAC), met with your elected officials in-person, or just shared our social media policy-related posts to inform others in 2019. To those of you who have not yet engaged, we implore you to do so, and we welcome you with open arms.

Why not make it a New Year’s resolution to ramp up your advocacy efforts in 2020? Your efforts can be as simple as responding to an Action Alert or attending a town hall meeting in your hometown with your Member of Congress.  If you are ready to get more involved in our policy efforts, consider attending the Disability Policy Seminar in Washington, D.C. this March or the NDSC Advocacy Boot Camp at the NDSC Convention in New Orleans next June. You can also support our team by making a donation through the NDSC website and indicating “Policy” in the comments section. Whether your resolution to support the NDSC policy effort is by giving your time or financial support, please know that it is appreciated.

We wish you all very happy holidays and hope that we can advocate together in 2020 and beyond!

Best wishes,

Heather, Stephanie, Ricki, and Lauren

Policy Team

Federal Spending Package

The House and Senate have passed a bipartisan $1.4 trillion spending package to fund the federal government through September 2020. This bill was signed by the President on December 20, 2019, thereby avoiding a looming partial government shutdown. As was the case in the previous year, many programs that affect the disability community were level-funded or received increases in 2019. Learn more about the appropriations process, by visiting the Committee for a Responsible Federal Budget website.

Of particular note are appropriations for the following programs that impact people with disabilities:

  • The bill included level funding of $11.8 million for the Postsecondary Programs for Students with Intellectual Disabilities (the TPSID programs under the Higher Education Act) and to continue the work of the National Coordinating Center (NCC) (currently Think College).
  • IDEA funding received a relatively small increase of $400 million, but this amount will likely be eaten up by increased annual enrollment and/or inflation.
  • Special Olympics education programs received $20.1 million, an increase of $2.5 million above the 2019 level. (The President’s budget initially proposed to eliminate this program.)
  • Funding for the University Centers for Excellence in Developmental Disabilities Education (UCEDDS), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs, Developmental Disability Councils and Protection and Advocacy organizations received slight increases above their 2019 levels. See here for the exact amounts.
  • Family Caregivers Services provided by the Administration for Community Living (ACL) received $196 million, an increase of $5 million above 2019.
  • The bill included $202 million for Housing for Persons with Disabilities, $17.8 million above the 2019 enacted level and $45 million above the President’s budget request. This includes $40 million for new construction.
  • The bill also included another short-term reauthorization for the Medicaid Money Follows the Person program, which will now be funded at its current level until May 22, 2020.

A press release issued by the Committee for Appropriations provides more detail about these appropriations and bills.

Court Ruling on the Affordable Care Act

The Fifth Circuit Court of Appeals has issued a ruling in the case of Texas v. United States, finding the individual mandate of the Affordable Care Act (ACA) unconstitutional in light of Congress’ elimination of the tax penalty to enforce it. The Court did not invalidate the entire law but rather sent the case back to the lower court to determine whether the other parts of the ACA can legally stand. Provisions such as protections for those with pre-existing conditions, Medicaid expansion, and the ability for children under age 26 to stay on their parents’ insurance hang in the balance. This case will likely wind up in the Supreme Court, but timing is uncertain.

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ABLE 5 Year Anniversary and ABLE Age Adjustment Act

December 19 marked the five-year anniversary of the passage of the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (Public Law 113-295).  The ABLE Act amended the Internal Revenue Service Code of 1986 to create tax-free savings “ABLE” accounts for people with disabilities. ABLE accounts are financial tools that are designed to help individuals with disabilities save and pay for disability-related expenses such as housing, transportation, personal support services, health care costs, and more, without jeopardizing certain public benefits. Since 2014, over 50,000 individuals have opened ABLE accounts, allowing members of the disability community to save for health care, housing, education, and other needs. NDSC advocated for the passage of the ABLE Act for nearly a decade and enjoyed celebrating this milestone at a recent Hill event.

There are currently 45 state ABLE programs, most of which are available nationwide. Unfortunately, the current ABLE law imposes a requirement that an ABLE beneficiary must have obtained their disability prior to their 26th birthday which disqualifies millions of otherwise-eligible people with disabilities from opening ABLE accounts. NDSC has joined with other disability groups to advocate for the passage of the ABLE Age Adjustment Act (S. 651H.R. 1814). Passage of this bill would raise the age of onset of disability from 26 to 46 to have ABLE accounts and would enable six million more people with disabilities to become eligible to open an ABLE account.  It would also greatly enhance the sustainability of all ABLE programs nationwide.

Please use our Action Alert to call or email your U.S. Representatives and Senators and ask them to cosponsor this bill.

ABLE 5 yr Anniversary celebration

ABLE 5 Year Anniversary celebration on Capitol Hill. Maryland delegation with Senator Chris Van Hollen (D-MD)

Reauthorization of Money Follows the Person

NDSC has been advocating for additional funding for Money Follows the Person (MFP), a widely adopted and very successful Medicaid program that has helped over 90,000 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.

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NDSC, along with many coalition partners, has been seeking long-term reauthorization of this program but Congress has continued to issue only short-term renewals. Short-term reauthorizations are not the solution as many states have stopped providing services under MFP because of the uncertainties surrounding MFP funding.

NDSC recently joined with our coalition partners in a National Call-In Day and issued an Action Alert calling for a permanent renewal of MFP, which was included in a bipartisan drug pricing proposal on the Senate side. Unfortunately, this bipartisan agreement for permanent reauthorization was changed to another short-term renewal as a 5-month reauthorization and was included in the recent House appropriations package.

Please use our Action Alert to continue to push for a longer or permanent reauthorization as the program will expire again in May 2020.

IDEA Funding Bills

Since its enactment in 1975, the Individuals with Disabilities Education Act (IDEA) has proposed that federal funds should cover up to 40% of the excess cost of educating students with disabilities. However, the excess cost actually appropriated (put in the budget) by Congress still stands at just 16%. Bills to fully fund IDEA are introduced in every Congress but they have never gained traction.

S. 866  and HR 1878  are the most recent IDEA full funding bills. Two other bills that combine fully funding IDEA and Title I of the Every Student Succeeds Act (ESSA): S. 1172 and HR 2315.

Title I of ESSA benefits students with disabilities as well as other subgroups of students. All of these bills would gradually increase the funding for IDEA to $43,312,845,000 or 40% of the excess costs, whichever is greater, by 2029.

We will participate in the IDEA Full Funding Coalition to ensure that we receive the latest news and will alert advocates if it looks as though any of these bills will gain traction, and are likely to move forward.  It is good that increasing appropriations does not require the reauthorization (amendment) of IDEA.  We do NOT want Congress to reauthorize IDEA at this time because we would likely lose critical federal rights and oversight.


CCD 2020 Appropriations Letter

NDSC signed on to a letter from the Consortium for Citizens with Disabilities (CCD) Education Task Force to the majority and minority leaders of the Senate Appropriations Committee and Health, Education, Labor and Pensions Committee. The letter urged these leaders to work with the House of Representatives to increase investments in the federal education programs that serve students with disabilities, their families, and educators within the Departments of Labor, Health and Human Services, Education and related agencies.


Alternate Assessment Report

The National Center on Educational Outcomes (NCEO) recently published a report that provides an updated review of state criteria and guidelines for participation in the alternate assessment. The report analyzes state criteria for participation and factors not to use as the basis for decision-making, as well as how states define students with the “most significant cognitive disabilities.”


Accreditation Workgroup Meeting

The Think College Accreditation Workgroup, chaired by NDSC Senior Policy Advisor, Stephanie Smith Lee, met in November. The workgroup is currently updating the model accreditation standards for college programs for students with ID. During this meeting, two college programs presented on issues that have arisen regarding student code of conduct and Title IX sexual harassment and shared how their programs have collaborated with students, families and other campus offices to ensure students receive necessary information and support.

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Registration is OPEN for the Disability Policy Seminar

NDSC has partnered with The Arc, AUCD, AAIDD, NACDD, SABE, the Autism Society and UCP to host the 2020 Disability Policy Seminar. The Disability Policy Seminar, which will be held March 23 – 25, 2020, features two days of informative sessions led by policy experts and offers opportunities for participants to discuss key issues with others from their same state. On the third day, attendees will attend a breakfast on Capitol Hill with Members of Congress and then meet with their elected officials to speak about the high-priority issues that affect them most. Registration is now open; we hope to see you in March in Washington, D.C.!