Policy & Advocacy Newsline ~ October 22, 2018
Advocacy Needed: Help Us Get These Bills Passed in 2018!
The 115th Congress ends in December, and NDSC is working around the clock along with other disability groups to get several bills across the finish line. As explained below, the EMPOWER Care Act (S. 2227/H.R. 5306) and the ABLE Age Adjustment Act (S. 817/H.R. 1874) have the potential to positively impact many peoples’ lives, and their passage in this Congress is important to the sustainability of their programs. Bills that do not pass before the end of 2018 will need to be reintroduced in the next Congress, and the process of adding cosponsors, having committee hearings and trying to find a vehicle for passage starts all over again. We have updated NDSC Action Alerts on these issues. Please take a few moments to call and/or email your elected officials and ask them to support the EMPOWER Care Act and the ABLE Age Adjustment Act and pass them this session!
EMPOWER Care Act: Money Follows the Person
NDSC Action Alert on EMPOWER Care Act: HERE
NDSC recognizes the importance of Medicaid-funded HCBS to individuals with Down syndrome and is working closely with other disability groups to pass the EMPOWER Care Act (S. 2227/H.R. 5306) to reauthorize the Money Follows the Person program by the end of the year. The EMPOWER Care Act, introduced in the House by Representatives Guthrie (R-KY) and Dingell (D-NY) and in the Senate by Senators Portman (R-OH) and Cantwell (D-WA), would extend and improve the Money Follows the Person (MFP) Demonstration Project for five years. A version of this bill has passed the House Energy & Commerce Committee but it would only reauthorize the MFP program for one year. We are aiming for a five-year reauthorization, which is contained in the Senate version of the bill.
The MFP Project was enacted by President Bush in 2005 with strong bipartisan support. States have discretion in how to use the funds, which they have used to expand or enhance home and community-based services (HCBS) programs, reduce waiting lists and fund housing supports. At the end of 2015, more than 43 states and the District of Columbia were participating in the MFP demonstration program, with over 85,000 individuals with disabilities and seniors transitioning from institutions back into the community. However, the funding for the MFP program expired in 2016. Without reauthorization by Congress, states will lose access to this funding which helps many people with intellectual and developmental disabilities transition out institutional settings into the community-based care setting of their choice. For more information on MFP, please see HERE.
ABLE Age Adjustment Act
NDSC Action Alert on ABLE Age Adjustment Act: HERE
NDSC continues to be one of the leaders in the effort to pass the ABLE Age Adjustment Act (S. 817/HR 1874) this session of Congress. The ABLE Age Adjustment Act would amend Section 529A(e) of the Internal Revenue Code to increase the eligibility threshold for ABLE accounts for onset of disability from before age 26 to before age 46. This increase would result in six million additional individuals with disabilities becoming eligible to open an ABLE account, which is an important savings tool to empower individuals with disabilities to achieve and maintain health, independence and quality of life.
Not only is passing the ABLE Age Adjustment Act important from an equity perspective, but data from the National Association of State Treasurers (NAST) shows that passage of the ABLE Age Adjustment Act is critical for the sustainability of some ABLE programs nationwide. Passing the ABLE Age bill would greatly expand the pool of potential ABLE account holders and boost enrollment across ABLE programs nationwide. See the NAST Sustainability Report HERE.
For more information about ABLE programs, please visit the ABLE National Resource Center (www.ablenrc.org).
An Update on Medicaid
Last December, when Congress passed the Tax Cuts & Jobs Act, NDSC expressed concerns that the massive tax cuts contained in the bill would land Medicaid and other public benefits programs on the chopping block to pay down the national debt (See our former Action Alert explaining these concerns HERE). Recent comments by Senate Majority Leader Mitch McConnell (R-KY) about cutting entitlement programs like Medicare, Medicaid and Social Security to lower the record-high deficit have sounded alarms once again, and we anticipate that such entitlement reform will be prominently on the Congressional agenda in 2019 (see HERE). NDSC remains committed to protecting public benefits programs upon which many people with Down syndrome and their families rely and will fight against these cuts.
At least thirty states have recently submitted proposals to the Center for Medicare & Medicaid Services (CMS) to cut Medicaid. For a snapshot of proposals to limit Medicaid in approximately thirty states, see HERE.
Many of these proposals are in the form of work requirements. NDSC opposes Medicaid work requirements as we believe that they will negatively impact some people with disabilities and their caregivers. See our joint letter by the Collaboration to Promote Self-Determination (CPSD) and the Association Promoting Supported Employment (APSE) explaining this position (HERE).
In two of the states that have imposed work requirements in their Medicaid systems, Kentucky and Arkansas, health care and human rights advocates have joined together and filed lawsuits challenging the legality of these restrictions. See http://www.healthlaw.org for more information about these lawsuits. NDSC is closely monitoring these cases and will report on any decisions.
National Disability Employment Awareness Month
October is National Disability Employment Awareness Month (NDEAM). Sponsored by the US Department of Labor’s Office of Disability Employment Programs, the theme for this year’s NDEAM is “America’s Workforce: Empowering All.” Observed each October, NDEAM celebrates the contributions of workers with disabilities and educates about the value of a workforce inclusive of their skills and talents. For more information and resources about NDEAM, visit ODEP’s website at https://www.dol.gov/odep/topics/ndeam/.
New Disability Employment Report Released
A new report on disability employment has been released by the National Council on Disability: view HERE. The report recommends a phase out of 14c and a moratorium on new 14c certificates. It also includes an analysis of the Workforce Innocation Opportunity Act (WIOA) and the WIOA regulations. It recommends that the Department of Education NOT reopen the WIOA regulations for public comment. It also includes a recommendation to modernize AbilityOne. NDSC supports these recommendations and is grateful to NCD for putting together such a comprehensive and timely report.
NDSC Hosts Congressional Briefing on Competitive Integrated Employment (CIE)
NDSC, through the Collaboration to Promote Self-Determination (www.thecpsd.org), took a leading role in planning for a Congressional briefing on Competitive Integrated Employment (CIE) entitled “Success of Youth with Disabilities Transitioning From School to Competitive Integrated Employment.” This briefing was held on Wednesday, Sept. 26 at the Longworth House Office Building, and was sponsored by CPSD together with the National Council on Disabilities, in collaboration with Representatives Harper (R-MS) and Langevin (D-RI), co-chairs of the House Bipartisan Disabilities Caucus, Senator Bob Casey (D-PA), Senator Jerry Moran (R-KS), Senator Maggie Hassan (D-NH), Rep. Cathy McMorris Rodgers (R-WA), and Rep. Seth Moulton (D-MA).
The briefing showcased how states are helping youth with disabilities succeed as they transition from high school and enter the general workforce. It was attended by Dan Habib, nationally recognized filmmaker, who shared a clip from his new film Intelligent Lives, highlighting the experiences of people with disabilities transitioning from school to work. The materials and handouts from this briefing are available for download HERE.
NDSC is proud to have collaborated with Dan Habib, the filmmaker of Intelligent Lives (https://intelligentlives.org/) to develop an informational brief explaining the relationship between IQ testing and the Individuals with Disabilities Education Act (IDEA). You can read the brief HERE.
Public Charge Rule
On October 10, the U.S. Department of Homeland Security announced an expansion of the “public charge” rule. This proposed rule would amend the standards for when a person may be considered a “public charge”, which would make it significantly harder for people with disabilities to enter the U.S., immigrate to the U.S. or to become legal permanent residents. Under current law, non-citizens who are deemed to be a “public charge” can be denied entry to the U.S. if they are likely to use cash benefits like Social Security Income (SSI) or Temporary Assistance for Needy Families (TANF), or if they live in an institution. The new rule vastly expands the list of programs and benefits that would be disqualifying for entry into or permanent legal status in the U.S. See here for more information: https://medicaid.publicrep.org.
NDSC believes that the expanded scope of the “public charge” rule is discriminatory to people with Down syndrome, in that: admission to the United States – including travel for a medical procedure or to the NDSC Annual Convention – could be denied solely on the basis of having a child with Down syndrome or another disability. See NDSC’s statement HERE.
Fiscal Year 2019 Budget
In last month’s Newsline we outlined key education budget details as the bill made its way through Congress. That bill, called the Department of Defense and Labor, Health and Human Services, and Education Appropriations Act of 2019, has now passed the House and Senate and has been signed by the President. See details of the education budget in the September Newsline HERE.
New OSEP Director
The U.S. Department of Education has announced its new Director of the Office of Special Education Programs, Laurie VanderPloeg. We will be reaching out to her as soon as she is available for meetings. The announcement is HERE. There is also an Edweek article with some additional information HERE. To access Edweek articles like this one about the new OSEP Director you can sign up and get 3 free articles per month. We often post links to Edweek articles because they are always the first to publish critical education policy stories.
OSERS blog posts from 2 NDAC Members
NDSC is so proud to have two NDAC members whose blog posts are featured by the U.S. Department of Education on its Office of Special Education and Rehabilitative Services (OSERS) blog! Rachel Mast, self-advocate (pictured right) writes about why she loves her life, read HERE. Courtney Hansen was also featured, and wrote about how It Takes A Village, her article can be read HERE.
New OSERS Framework
The U.S. Office of Special Education and Rehabilitative Services (OSERS) released a new framework for rethinking special education, found HERE. Few details have been released on this framework and its implementation. However, advocates are expressing concerns like those raised in this article HERE.
Helsinki Commission Briefing on Building an Inclusive Society
NDSC is collaborating with the federally funded TIES Center on Inclusive policies and practices for students with the most significant cognitive disabilities (https://tiescenter.org/). The director of this Center, Dr. Sheryl Lazarus, spoke at the Helsinki Commission Briefing. You can read her testimony HERE.
Reports on the Every Student Succeeds Act (ESSA) and Equity
Two recent reports call out numerous state ESSA plans for not emphasizing the performance of student groups (such as the disability subgroup) and therefore not adequately holding schools accountable for the academic performance of these students. The report from the Alliance for Excellent Education can be found HERE. This report concludes that many state accountability plans for ESSA do not do a great job of incorporating the performance of vulnerable subgroups of students, such as racial minorities, English-learners, and those with disabilities. The report from the National Center for Learning Disabilities (NCLD) comes to the same conclusion and also analyses other aspects of state plans that affect students with disabilities. The NCLD report can be found HERE. State advocates should encourage their state departments of education to address these concerns. This issue of inadequate accountability for student subgroups has also been raised at Congressional hearings and in coalition letters to the U.S. Department of Education that NDSC has signed.
ESSA Parent Guide
The U.S. Department of Education recently released a parent guide and a presentation on the ways in which the Every Student Succeeds Act provides your state and district with flexibility. You can find both of these tools HERE under ESSA Flexibilities. NDSC has a concern with the way the alternate assessment is described in the guide, but the rest of the guide may be useful to parents. We have contacted the U.S. Office of Special Education Programs with our concerns.
NDAC Member Spotlight, Dria Law
Dria Law, one of our NDAC members from New Jersey, recently decided to run for her local school board. We got the chance to hear from her about the experience thus far. Check it out!
What motivated for you to run for the school board?
Never in a million years did I think my name and the word “election” would ever be used in the same sentence! However, I have always had a passion for education and have been involved in my children’s activities and our school district for years. And more recently, with the help of NDSC and many experienced parents and self-advocates, I became inspired by and involved with disability advocacy. Particularly with our current challenging political and legislative landscape, I felt it was time to step off the sidelines.
How have you found the process to be thus far? Is it time consuming? Easier or harder than you expected? What has been the hardest part? Most rewarding?
I am very excited and hopeful about the prospect of serving on our Board of Education, should I get elected. However, I have to admit that campaigning is a bit outside of my box! But nonetheless, so far it has been an informative, exhilarating and rewarding process. The hardest part has been learning to deal with some of the drama that seems to inevitably accompany the campaign process, but I’ve committed to stay above it and focus my energies on staying true to myself and my purpose for running. The most rewarding part hands-down has been the support and kind words I’ve received from so many in our community. And, regardless of the election outcome, I feel proud of the example I’m providing for my children and hope that it may in some way inspire their future advocacy as well.
What are you most looking forward to focusing on if you are elected?
Like many of us within the NDAC community, I am a strong advocate of inclusion, not just in education but in life, and if elected, I look forward to sharing that vision with others in my community. The first bullet point in my campaign is: “I believe that ALL students should have opportunities to be successful and feel valued and I will advocate for a culture of inclusion within our district and our community.”
Any advice for someone who is considering running?
Arm yourself with lots of information, recruit a group of core supporters and then Just Do It!
NDSC played the lead role in writing: Addressing the Policy Tangle: Students with Intellectual Disability and the Path to Postsecondary Education, Employment and Community Living.
- This comprehensive report (click HERE) is included in the inaugural issue of a new academic journal, the Journal of Inclusive Postsecondary Education. This peer-reviewed journal will focus on research within inclusive postsecondary education for students with intellectual and developmental disabilities (view HERE).
- The National Association of State Directors of Developmental Disabilities Services NASDDDS newsletter, Community Services Reporter, included an article on the report, with the recommendations and a link to the full report.
NDSC is a proud cosponsor of the The State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities (click HERE) that took place October 10th and 11th in Syracuse, New York. The conference is an opportunity for students, families, professionals, program staff and others to learn from and network with one another. 400 attended the conference from as far away as New Zealand, including 150 Student Leadership Conference attendees. Check out the student leader’s advice (click HERE) on how to get involved in campus and how to advocate.
NDSC Senior Policy Advisor, Stephanie Smith Lee, gave two well-attended presentations at the conference on “How You Can Make a Difference in Federal and State Policy” and “Program Accreditation: Current Status and Next Steps” and led a technical assistance session on these topics.
Stephanie Smith Lee, NDSC Senior Policy Advisor is pictured right, presenting at the conference.
Did you miss our webinar about the upcoming midterm elections?
“Why You Should Care About the Midterm Elections” – You can watch the recording HERE!
A reminder to get out and VOTE!
It is important for every self-advocate to exercise their right to vote. Find out more information about your voting rights and how to become informed HERE.
Another opportunity to learn about key disability issues in this election and what is at stake for persons with disabilities is a webinar on October 25 hosted by Think College and presented by NDSC Senior Policy Advisor, Stephanie Smith Lee, titled “Washington Outlook: What Difference Will the Election Make for Persons with Disabilities?” For the webinar description, time and registration, click HERE.
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