Over the past ten months, NDSC has been working closely with the broader disability community to defeat various Congressional proposals that aim to repeal the Affordable Care Act (ACA) and make massive cuts to and impose caps on Medicaid spending. The most recent proposal to be defeated was the Graham-Cassidy bill, for which NDSC submitted written testimony in opposition, found here. These successful advocacy efforts to defeat Graham-Cassidy and its predecessors have been attributed to people with disabilities, their families and allies who made their voices heard and shared their personal stories. THANK YOU FOR PARTICIPATING IN THESE ADVOCACY EFFORTS – THE DOWN SYNDROME COMMUNITY HAS MADE A HUGE DIFFERENCE!
Unfortunately though, the threats to Medicaid and health care from both Congress and the Administration continue through different avenues: the budget process and Executive Orders.
On October 5, the House passed the 2018 budget resolution that includes plans for trillions of dollars in spending cuts over a decade in Medicare and Medicaid (read here for more information). The Congressional Budget Office defines a budget resolution as: “A concurrent resolution (adopted by both Houses of Congress) that sets forth a Congressional budget plan for the budget year and at least four outyears. The plan consists of targets for spending and revenues…” (Source: https://definedterm.com/budget_resolution).
The Senate just passed its own budget resolution on October 19. It includes $5.71 trillion dollar cuts over the next decade from domestic programs, including $1.7 trillion dollar cuts to Medicaid. Because the Senate and House plans are not identical, they will either need to go to a conference to be reconciled or the House may just decide to accept the Senate budget as-is, which would further expedite the tax reform process. These tactics will allow the Senate proceed to a reconciliation bill that will enable the budget to be passed with just 51 votes, not the usual 60 needed for major bills. The Congressional Budget Office defines a reconciliation bill as “A bill reported pursuant to reconciliation instructions in a congressional budget resolution proposing changes in laws that, if enacted, would achieve the budgetary goals set forth in the budget resolution.” (Source: https://definedterm.com/reconciliation_bill). Once Congress approves a budget, it will then start writing a tax bill based upon the passed budget. We are very concerned that Congress will use deep cuts to Medicaid to finance tax reform through this process.
We are also very concerned about an Executive Order signed by President Trump on October 12 that aims to create cheaper health care plans with weaker protections. Although this Executive Order is about private health insurance and not Medicaid, it is likely to impact people with pre-existing conditions, including people with disabilities. Such health plans have the potential to increase the cost of health care for people with serious health conditions (including disabilities), and insurers may leave the marketplace, resulting in market destabilization. (read here for more information)
It appears that Congress may share these concerns about this Executive Order, as there is a bipartisan effort by Sen. Alexander (R-TN) and Sen. Murray (D-WA) to broker a deal that would provide subsidies to insurance companies for two years to help stabilize the market. (read more) However, both President Trump and Speaker of the House Paul Ryan (R-WI) are opposed to the agreement which makes passage unlikely. (read more)
The fight to protect our health care and Medicaid is not over. NDSC will continue to advocate on the front lines for these issues along with the broader disability community. We will keep you informed when urgent action needs to be taken. In the meantime, please continue to share your personal stories with your elected officials about how much Medicaid means to you and people with disabilities, as well as how much you rely on health care that does not discriminate against people with pre-existing conditions.
On October 15, NDSC received notification from the family of Sean Cross about a discriminatory incident upon a United Airline’s flight. The next day, NDSC’s Executive Director, David Tolleson, sent a letter to United Airline’s CEO and Customer Care department. The letter, which can be found here, outlined the incident upon the flight and reiterated United’s policy according to their website. The crew members did not ask Sean if he was capable of providing assistance to others in an event of an emergency and he was asked to move simply because of his appearance. The crew also refused to speak to Sean directly and made very loud, rude and public announcements to the whole airplane full of passengers. NDSC has suggested that United review its diversity sensitivity training as well as send an apology to Sean and his family.
Brenda Cross, Sean’s mom, sent this follow-up to NDSC:
“On behalf on my son Sean and our entire family I want to thank you for your advocacy in regard to the incident on United flight 783. I am reminded once again how fortunate we are to have such a strong support network through our local and national groups. As parents who have been lifelong advocates for our son Sean, we were shocked at the behavior of the flight crew, and disappointed in the reaction from other passengers. Due in large part to the advocacy of the National Down Syndrome Congress, advances in education, employment, and social acceptance have had a positive impact on the lives of our children with Down syndrome. I didn’t expect this type of situation to occur in 2017. My hope through our continued focus on this issue is that United – and other airlines –will establish a formal training process to address how they treat all individuals with special needs. Specifically, how to use people-first language and to treat everyone with respect. I want to thank you again for reaching out and fighting for the rights of my son, and all individuals with Down syndrome.”
Every Student Succeeds Act (ESSA-replaced No Child Left Behind -NCLB)
Almost all of the 17 ESSA plans that were submitted to the U.S. Department of Education in April and May have received approval. The remaining 34 states and Puerto Rico submitted their plans in September and October, and are ready for review. NDSC has been reviewing the approved plans and the newly submitted plans. We are concerned that most of these plans are missing required provisions or have provisions that are not in compliance with the law. We have shared our concerns with Congressional staff. You can view submitted and approved plans by clicking on the state name here.
There was a Senate hearing on October 3, 2017 in which a witness, Dr. David Steiner from the Johns Hopkins Institute for Education Policy, mentioned a number of the problems with state plans that NDSC has identified in its analyses. You can view the hearing video here and read Dr. Steiner’s testimony here. NDSC will continue to advocate for accountability under ESSA regarding the academic performance of students with disabilities and other historically marginalized students.
Edweek has developed a resource to help keep advocates informed about the status of ESSA state plans. View it here.
National Technical Assistance Center for Inclusive Practices and Policies
The U.S. Department of Education has awarded a five-year, $10,000,000 grant to the National Center on Educational Outcomes and its partners to establish a new Center on Inclusive Practices and Policies. NDSC is thrilled to announce that its Senior Education Policy Advisor, Ricki Sabia, will serve as a Parent Advisor and Liaison to this Center. The primary outcomes of the Center are to provide assistance to states and districts to improve the quality of instruction for students with significant cognitive disabilities in inclusive environments through the use of existing curriculum and instructional materials and to provide models and coaching to both general education and special education teachers to create more inclusive opportunities. For details about the goals to support these outcomes see the announcement.
Universal Design for Learning
On October 3-4, NDSC attended and presented at a National UDL Policy Council meeting. NDSC shared two of its resources at this meeting. One resource is called ESSA Requirements and Local Education Agency (LEA) Advocacy Tips, it can be found here. This resource explains the requirements in ESSA regarding the development of LEA (school district) ESSA plans and describes the opportunities for advocacy regarding UDL and inclusive education, as part of this process. We also shared a Google document in which the UDL language from each state’s ESSA plan is pasted. This document will be updated as plans are approved and can be found here.
For the remainder of the meeting, NDSC acted in an advisory capacity as decisions were made regarding the UDL Credentialing and Certification Initiative. This is an initiative to develop a UDL credentialing and certification process to recognize best practices in education program design, product development and classroom instruction. You can read more about this initiative at http://www.udlcci.org/.
NDSC Works on Endrew F. Amicus Brief for 10th Circuit Court
In March 2017, the U.S. Supreme Court delivered its opinion for the case Endrew F. v. Douglas County Schools District. The Court ruled that Individualized Education Programs (IEPs) must give students with disabilities more than a de minimis, or minimal, educational benefit. This is an important improvement in the standard by which free, appropriate, public education decisions must be measured. The Endrew F. case was remanded (sent back) to the 10th Circuit to be decided using the Supreme Court opinion as a guide.
The Bazelon Center for Mental Health Law filed an amicus brief with the 10th Circuit Court, which was signed by other organizations, including NDSC, and former U.S. Department of Education officials, including NDSC Senior Policy Advisor Stephanie Smith Lee (former Director of the Office of Special Education Programs) and NDSC Policy Advisory Council member, Madeleine Will (former Assistant Secretary of Education). An amicus brief is a legal document filed in court cases by organizations and individuals who are not parties in the case, but have a strong interest in the subject matter. Stephanie Smith Lee, Madeleine Will and Ricki Sabia also provided input into the brief as it was being developed. You can read the 10th Circuit amicus brief here.
Self-Advocate Spotlight: Madison Essig
Madison Essig is a sophomore in the Mason LIFE program at George Mason University in Fairfax, Virginia. She is a member of Campus Democrats, Hillel, and Gamma Phi Beta sorority, and serves as the Mason LIFE representative to the GMU Student Government. She lives on campus with two roommates and takes three university classes along with LIFE program classes. Photo credit: Ruby’s Rainbow (rubysrainbow.org)
What problem did you address at George Mason?
Last year, after serving as a Mason LIFE representative to the GMU Student Government, I decided that I wanted to run for a position as a Student Senator. I submitted the required materials but was told that I could not run because as a student in the LIFE program I was not a regular undergraduate student. This was not the first time that I learned that Mason LIFE students were not fully included at GMU. I sought to rush a sorority last year and was told that I would not get a bid because I was not a “Mason Student” but a “Mason LIFE student.” I advocated to have the status of Mason LIFE students changed. I explained to GMU leadership that it was not fair to me to exclude me from joining a sorority and that I should be allowed to be a part of all campus activities. At the end of the school year, GMU changed the status of Mason LIFE students to “Mason Students” so that we can participate in Greek life. For Student Government, I had to advocate further, as the Student Body Constitution required that students be “undergraduate” students in order to run for office, vote in student body elections or hold a position.
How did you advocate to change this?
I talked to Student Senators about the need to change the rules to allow Mason LIFE students to participate fully in Student Government. The Constitution said that the Senate represented “all students” at GMU, but that was not true. The GMU students in the LIFE program were not included. I came up with a plan to formally amend the Constitution. I worked with some Senators to draft proposed language to amend the Student Body Constitution. There was a public hearing on the proposed language. I spoke at the hearing to say why it is important for all students to be able to have a vote and run for office. The proposed language then went to a first reading and was referred to a committee. It passed the committee and became “Madison’s Bill”. The bill then went into a second reading and was again debated. I again spoke on behalf of the bill. Some students spoke out against the bill. Their comments made some LIFE students feel that they were not valued equally. Madison’s Bill was then voted on by the Senate and passed by a 16-3 vote. The final step to amending the Constitution was a student body vote on Madison’s Bill.
What was the outcome?
Madison’s Bill was voted on by the GMU Student Body on October 4, 2017. It passed by majority vote. Mason LIFE students can now vote in Student Body elections, run for office and hold positions. I am proud to have made this change so that Mason LIFE students are now recognized as full members of the GMU student body. I hope other colleges and universities do the same thing and recognize all students as equal.
NDSC Sponsors SOTA Conference
NDSC is a proud sponsor of the State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities, which will take place November 15 & 16, 2017 in Syracuse, New York. This outstanding conference brings together students, family members, university and college faculty, program staff and others to learn from one another and network. NDSC Senior Policy Advisor, Stephanie Smith Lee, was instrumental in developing the conference and serves on the Executive Planning Committee on behalf of NDSC.
Limited scholarships are still available for family members. See: http://www.sotaconference.com for more info. See below for info about the Student Leadership Conference, which will be taking place at the same time.
NDSC Policy Staff Attend Briefing on Disability Employment
NDSC Policy & Advocacy Director Heather Sachs and NDSC Senior Policy Advisor Susan Goodman attended a Congressional briefing in celebration of National Disability Employment Awareness Month that was sponsored by the Collaboration to Promote Self-Determination (www.thecpsd.org), of which NDSC is a founding member. The briefing, entitled “The Workforce Innovation and Opportunity Act (WIOA) of 2014 Advisory Committee Recommendations and Legislative Opportunities,” reviewed the key findings of the WIOA Advisory Committee and highlighted state, employee, and employer perspectives and best practices. Speakers included Dr. David Mank, Chairman of the WIOA Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities; Charles Hill, General Manager of Embassy Suites Washington DC Convention Center, Patti Killingsworth, Assistant Commissioner and Chief of Long-Term services and Supports and Laura Kustner, Consumer Products Safety Commission.
The handouts, written testimonies and other materials from the briefing are available here.
The RAISE Family Caregivers Act (S. 1028/H.R. 3759) Advances to the House
The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act (S.1028/ H.R. 3759) has unanimously passed the Senate and has gone to the U.S. House of Representatives. There are an estimated 40 million family caregivers nationally who spend countless hours assisting parents, spouses, children and adults with disabilities, or other loved ones with activities such as medical tasks, meals, transportation and other services that enable them to live as independently as possible at home and in their communities. NDSC supports this bill, which would lay the groundwork for the development of a national plan to address the needs of family caregivers – including those who support people with Down syndrome and other disabilities.
ADA Education and Reform Act of 2017 (H.R. 620)
NDSC has joined with over 250 disability groups in a letter of opposition to H.R. 620, the Americans with Disabilities (ADA) Education and Reform Act of 2017. The bill would require someone who faces discrimination or illegal lack of accessibility to a public accommodation to give written notice to the owners of the non-compliant public accommodation and a sixty-day window to the owner to research the issue and plan for improvements before the aggrieved individual with a disability can file a lawsuit. Aimed at targeting frivolous lawsuits, NDSC along with our allies believes that this bill would place an undue additional burden on people with disabilities and sets a bad precedent for civil actions under the ADA. Instead, we argue that Congress should consider legislation that would help businesses to comply with the ADA. Unfortunately, this bill has gained traction in the House. On September 7, the bill was voted out of the House Committee on the Judiciary and will now be scheduled for a House floor vote. The bill continues to gain cosponsors and the support of businesses and trade associations. To date, there is no companion bill in the Senate.