Announcing The National Down Syndrome Advocacy Coalition
The National Down Syndrome Congress (NDSC) is thrilled to announce the launch of a new nationwide grassroots advocacy program, the National Down Syndrome Advocacy Coalition (NDAC). NDSC was founded in 1973 as a membership-based organization dedicated to an improved world for individuals with Down syndrome, whose purpose is to promote the interests of people with Down syndrome and their families through advocacy, public awareness and information. NDAC will provide another NDSC member service – educating its members and allies about policy issues and giving them advocacy tools and techniques they need to effectively engage with their legislators to advocate for change.
“NDSC’s Policy and Advocacy Team has unparalleled expertise and experience in policy issues across the lifespan of people with Down syndrome such as early, elementary and secondary education, transition, postsecondary education, employment and the critical adult support systems such as Medicaid, health care and housing,” says NDSC Executive Director David Tolleson, and “NDAC will provide a formal mechanism to engage individuals – regardless of level of advocacy experience – in these efforts in order to maximize the power of our community’s voice.”
Led by NDSC’s Policy and Advocacy Team, NDAC will consist of three types of members: Members, State Leaders and Group Members. NDAC Members are volunteer advocates of all abilities and levels of advocacy experience. NDAC State Leaders are NDAC Members who have advanced advocacy experience and will serve in a volunteer capacity as NDSC’s main grassroots organizers for their states. State Leaders will be selected by NDSC staff through a rolling application process starting in January 2018. NDAC Group Members are local, statewide or national groups that are Down syndrome-specific, cross-disability, other disability-specific or other allies who are interested in working together with NDAC on outreach, messaging and sharing information.
NDSC is currently accepting applications for NDAC Members [HERE] and NDAC Group Members. Please email firstname.lastname@example.org if you are interested in becoming a group member. NDSC will begin accepting applications for NDAC State Leaders in January 2018. All NDAC Members and State Leaders must be members of NDSC. Please visit Frequently Asked Questions for more information. We hope you will join NDAC and help us to fight for equal rights and opportunities for people with Down syndrome.
Action Alerts Now Available- please sign up!
NDSC has recently added the technical capability to offer turnkey, simplified Action Alerts to our members and allies. This will help bring our grassroots advocacy to the next level by enabling the NDSC Policy & Advocacy Team to send you targeted alerts, match you up with your elected officials, and guide you through an easy process of sending messages to your legislators on important policy issues. It will also allow you to share NDSC’s Action Alerts with your networks easily & more effectively.
SIGN UP HERE to receive timely, accurate information from the NDSC Policy & Advocacy Team and to 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. Together, we can continue to advocate for laws and policies that will remove barriers and increase opportunities for individuals with Down syndrome. Please join us in these advocacy efforts and sign up today!
NDSC would like to thank Mitch and Julie Rothholz for their generous financial donation to license the Voter Voice system that allows for these Action Alerts. Mitch serves as an NDSC Board Member and is a Co-Chair of the NDSC Public Policy Advisory Council. Both he and Julie are passionate advocates, and we are honored to have them, and their son, Evan, as part of our NDSC community. We are so grateful!
Tax Reform Bills Update
The House version of the Tax Cuts and Jobs Act, H.R. 1, just passed the House on Thursday by a vote of 227-205 (See here). Last night, the Senate Finance Committee approved the tax proposal that was introduced on November 9, 2017. The Senate version is likely to be voted on right after Thanksgiving. The bills will then go to a conference between the House and Senate so that differences can be worked out before it goes to the President for signature.
There are some significant differences between both versions of the bill (e.g., the Senate version does not repeal the medical expense deduction often relied upon by individuals with disabilities), but both bills dramatically increase the federal deficit by $1.5 trillion dollars over 10 years (see here).
Although the current tax proposals themselves do not cut Medicaid, the road to cuts has already been paved by the budget resolution for Fiscal Year 2018.
The budget resolution allows the Senate to cut $5 trillion dollars in spending during the next decade, including more than $1 trillion dollars in cuts to Medicaid. The cuts authorized in the budget resolution will have a devastating impact on all federal programs that help people with Down syndrome throughout their lifespan — to be educated, develop job skills, attend post-secondary and other transition programs, and to live and work in the community.
The situation is changing every day as new amendments are introduced. On November 14, a provision repealing the individual mandate in the Affordable Care Act (ACA) was added to the Senate tax bill, essentially turning it into a health care reform bill. The Congressional Budget Office said this week that repeal would result in 4 million people losing their health insurance in the first year and 13 million in a decade. The House bill had no such provision.
We are greatly alarmed by this latest attempt to repeal the ACA by inserting repeal language into the Senate tax bill, and we recently issued an Action Alert [here] asking constituents to call their Senators and urge them to oppose any tax bill that includes this health care reform attempt. As always, NDSC is working with other national disability groups to monitor and analyze developments regarding the bill. We will continue to keep you updated and encourage you to call your Senators!
Left to right – Madeleine Will (NDSC Public Policy Council Member),
Heather Sachs, Stephanie Smith Lee, Ricki Sabia
Secretary of Education’s Proposed Priorities for Discretionary Grants
On October 13, 2017 the Secretary released a document that proposed 11 priorities for discretionary grant funding and related definitions. Stakeholders were given until November 13, 2017 to provide comments. NDSC developed detailed comments recommending amendments to all of these priorities. These recommendations would provide greater consideration of individuals with disabilities and the strategies that benefit them (e.g. Universal Design for Learning, customized employment, Positive Behavioral Interventions and Supports, etc.). They also address specific issues that impact postsecondary programs for students with disabilities. You can read NDSC’s comments here. Priority 1 of the Secretary’s proposed grant priorities deals with educational choice. The NDSC comments make it clear that certain issues, including accountability and civil rights under federal laws, must be addressed before federal funds can be used for private schools or private educational programs. The reasons for these concerns are discussed in an article available here.
Amicus Brief for 9th Circuit Case Involving a Child with Down Syndrome
NDSC, two state Arc chapters and the Association of University Centers on Disabilities, as well as NDSC Senior Policy Advisor Stephanie Smith Lee (as former Director of the Office of Special Education Programs) and NDSC Policy Advisory Council member, Madeleine Will (as former Assistant Secretary of Education) signed onto an amicus brief filed by the Bazelon Center on October 30, 2017 in the 9th Circuit Court of Appeals. Stephanie, Madeleine and Ricki Sabia provided input into the brief.
The brief is in support of a child with Down syndrome in Arizona and his parents. The case is a result of the parents’ efforts to have their son included in general education classes in the Gilbert Unified School District. This case is important for many reasons, including the fact that it will give the Circuit Court an opportunity to interpret the Endrew F. Supreme Court case. The Endrew F. case raised academic expectations for students with disabilities by saying that a free, appropriate public education (FAPE) must mean much more than minimal educational benefit, which was the standard for FAPE previously used by many courts. You can read the full brief here.
NDSC Letter to Secretary DeVos on Rescinded Guidance Documents
President Trump issued an Executive Order last winter, which created a task force at each federal agency that would be responsible for combing through existing guidance documents and regulations to determine which ones can be repealed or modified as outdated, unnecessary or ineffective. Guidance documents and regulations provide details to states and districts on how they should be implementing federal laws. Guidance documents can be rescinded without formal procedures, but regulations require a more involved process that includes stakeholder comment. The difference is because regulations are legally binding, whereas guidance describes the Department’s current thinking on an issue.
In October the task force at the Department of Education rescinded more than 500 guidance documents that were deemed to be outdated. Since very little information was provided about some of these documents and the reasons for their rescission, it is impossible to be certain of the impact. However, it does appear that most of these documents were outdated and/or have been replaced with more current materials. NDSC’s primary concerns are the lack of transparency in the process and the need for stakeholder input before the task force moves on to make determinations that any guidance documents or regulations are unnecessary or ineffective, which is the next phase of the process.
NDSC sent a letter expressing these concerns to Secretary of Education DeVos, with a copy going to the Acting Assistant Secretaries for the Office of Special Education and Rehabilitative Services, the Office of Elementary and Secondary Education and the Office of Postsecondary Education. You can read the letter here.
NDSC Joins with Advocates to Urge the Secretary Not to Approve the ESSA Plans for Florida, New York and Texas
Both the Florida and New York ESSA plans egregiously violate the assessment and accountability provisions of the law in ways that would set a terrible precedent for other states. Therefore, NDSC joined other national organizations to oppose the approval of these plans by the Secretary of Education. You can read the letter regarding the New York plan here and the Florida plan here.
In addition, NDSC signed on to a letter from Texas advocates to the Secretary about the Texas Education Agency’s lack of responsiveness to stakeholder concerns about their state ESSA plan. The letter asks the Secretary to send the plan back for revisions. The Texas letter can be found here.
NDSC and Kansas Advocates Express Concerns about ESSA Accountability
NDSC and Kansas advocates Jawanda Mast and her daughter Rachel are featured in a public radio article that discusses how the Kansas ESSA plan will exclude almost half of its schools from accountability for students with disabilities. This issue, called N-size, is a problem in many state plans. You can learn more about N size by reading the article here. In addition, you can listen to a great audio clip of Jawanda and Rachel, as well as Rachel’s principal, talking about accountability and inclusion. Click on the “Listen” button under the photo at the beginning of the article to hear the interview.
New ESSA Advocacy Tool Regarding Alternate Diplomas
NDSC and the Advocacy Institute have created a tool to help advocates know what should and should not be in policies regarding a state-defined alternate diploma for students who take alternate assessments under ESSA. If your state is planning to develop an alternate diploma, check out the advocacy tips here.
Did you know that Down syndrome is stillone of the least-funded genetic conditions at the National Institutes of Health (NIH), despite being the leading cause of development delay in the US and in the world?Members of congress, internationally recognized researchers and leaders in the Down syndrome community testified today before theU.S. House of Representatives AppropriationsSubcommittee on Labor, Health and Human Services, and Education.
The hearing began with words from Representative Pete Session (R-TX) and Cathy McMorris Rodgers (R-WA), who both are parents to individuals with Down syndrome. Cheri Bustos (D-IL) also spoke as the Co-Chair of the Democratic Policy and Communications Committee.
The committee then heard from a panel that included:
Michelle Whitten, President & CEO of the Global Down syndrome Foundation
Dr. William Mobley, Executive Director for the Research and Treatment and Florence Riford Chair of Alzheimer’s disease Research
Dr. Joaquin Espinosa, Executive Director, Linda Crnic Institute for Down Syndrome
Frank Stephens, Quincy Jones Advocate, Global Down Syndrome Foundation
The committee heard powerful testimony from Frank Stephens, which brought the room to tears. “I am a man with Down syndrome and my life is worth living.” You can listen to his testimony here.
Down syndrome research provides unique opportunities to examine the extra chromosome inindividuals. People with Down syndrome are more likely to develop Alzheimer’s disease, less likely to develop tumorous cancerous and very rarely have heart attacks. However, 50% of babies are born with a chromosomal defect and juvenile leukemia has an increase likelihood. Research into these special circumstances could help lead to medical breakthroughts for not only individuals with Down syndrome, but everyone. The committee and panel made sure to point out, this research is not to find a cure or eliminate the prevalence of Down syndrome, but find cures to conditions that are associated with Down syndrome- such as Alzheimer’s disease.
Thank you to the Global Down Syndrome Foundation for organizing this hearing and the many advocates that came from all throughout the country. The room was so packed that there was an overflow room.
The entire hearing was recorded by CSPN and is available here.
Pictured left: Heather Sachs, Michelle Sie Witten and her daughter, Sophia, Debbie Revels (ED of DSA of Jacksonville FL) and Dr. Espinosa.
Pictured right: Advocates from numerous states with Frank Stephens, who gave testimony during the hearing.
Self-Advocate Spotlight: Frank Stephens
As mentioned above, Frank, who is from Virginia, delivered powerful testimony at an NIH hearing this month. The video of his testimony has since gone viral- shared throughout the world and by thousands of people.
How did you prepare for the testimony?
I only had a few days’ notice of the hearing, so I had to work faster than usual. I was speaking for the Global Down Syndrome Foundation. I asked Michelle Whitten of Global what was most important to them. I then looked for parts of speeches I had written before that I wanted the subcommittee to hear. The hardest part was making it only five minutes long. When I knew what I wanted to say, I practiced speaking it aloud until I was comfortable with it. Then I had my Dad time me. I had to cut some parts to get it down to five minutes. It was a little longer at the hearing, but that was because people laughed and applauded. The Committee did not seem to mind.
What do you believe was the most important point you addressed with the subcommittee during the hearing?
Because it was an Appropriations Subcommittee, the most important point was that they need to give funds for research. No matter how many people see the testimony, only the subcommittee can put funds in the budget. I also believe it is important every time I speak to make sure that people understand that people with Down syndrome lead good lives. We live, love, laugh, and work just like everyone else. Our lives are worth living.
The video of your testimony has now gone viral. Did you imagine that it would be shared across the globe? How has this experience impacted you?
No one could have expected how this testimony has spread. I did not expect it, but I love it. I am a big ham and I love attention. I am so happy that millions and millions of people have seen the testimony and are thinking and talking about the value of our lives.
What advice do you have for other self-advocates who are interested in getting more involved in advocacy? How did you get started?
I have been speaking in public for almost fifteen years. Advocates should figure out what they do best and work hard at that. The best advocacy is living a full life and showing the world how much you can do. Whatever you do to advocate, you must be willing to work very hard at it. You must practice, practice, practice. I think I was born to perform. It is what I love. I think of every speech I do as a performance. That doesn’t mean what I say is not true. It just means that I want to have the most impact that I can. Every time I speak, I think about the audience and how I want to “make them laugh, make them cry, and make them think.” I’m pretty sure it worked this time.
State of the Art Conference
NDSC is pleased to co-sponsor the State of the Art Conference that is taking place this week at Syracuse University. We are represented by NDSC Past President Marilyn Tolbert, NDSC Program Director Jolie Ganley, and Senior Policy Advisor Stephanie Smith Lee (speaking at a plenary session). Almost 400 are attending the conference, including 90 students and attendees from four foreign countries.
ABLE Act Update
NDSC is a founding member of the ABLE National Resource Center (“ANRC”) and continues to actively participate in ANRC’s informational campaigns and outreach. The NDSC Policy Team will be participating in a Congressional briefing on ABLE Act Implementation on December 4, 2017 from 10:00am – 12:00pm in Washington DC. The briefing will be hosted by the ABLE National Resource Center (ANRC), sponsored by Senator Robert “Bob” Casey, Representative Pete Sessions and Representative Cathy McMorris Rodgers, in collaboration with the Consortium for Citizens with Disabilities (CCD) Financial Security Taskforce and the National Association of State Treasurers (NAST) ABLE Committee. It will explore account owner demographics, number of accounts open, contribution levels and other significant data points. It will also highlight successes, examine implementation challenges, and look into the future with respect to legislative recommendations to strengthen ABLE. Members of Congress, their staffs, disability advocates and other ABLE stakeholders are invited to attend this briefing – click here to register.
We are happy to report that ABLE account holders will be able to save even more money in their accounts starting in 2018. Due to inflation adjustments recently announced by the Internal Revenue Service, the annual contribution limit to ABLE accounts will be raised from $14,000 to $15,000 beginning in January 2018. This will enable people to save more funds in their ABLE accounts without jeopardizing much-needed benefits such as Medicaid and Supplemental Security Income.
There are nearly thirty states that have already launched ABLE programs, most of which are available to qualified individuals with disabilities nationwide. (See www.ablenrc.org for more details).
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.
Policy & Advocacy Action Alert | September 22, 2017
We all need to take action, and we need to do it NOW. The Graham-Cassidy health care billwill have devastating effects on the Down syndrome and broader disability community. People with pre-existing conditions will suffer from less coverage and higher premiums, and there will be drastic cuts to Medicaid and the community supports upon which people with Down syndrome rely. See here for more information.
Things will move very quickly over the next week and advocates need to act aggressively to defeat this bill. Majority Leader Mitch McConnell has announced his intention to bring this bill to a vote on the Senate floor next week. If it passes the Senate, it will go immediately to the House for a vote and Speaker Paul Ryan has said he would pass it without amendments. President Trump has stated that he will sign it. If we do not act quickly, this bill could become law.
We realize that at least two Republican Senators, Senator McCain (R-AZ) and Senator Paul (R-KY) have recently issued formal statements of their intentions to vote NO. Do not let this stifle our advocacy efforts. In fact, we need to push harder to bring some others to come out as firm NO’s. We cannot back down!
1. CONTACT YOUR SENATORS AND REPRESENTATIVE AND ASK THEM TO OPPOSE THIS BILL OR ANY OTHER BILL THAT WOULD CAP AND CUT MEDICAID! Calls are best, but email and social media is also effective.
Go to www.protectourmedicaid.org for a call script, talking points and a social media toolkit.
Please call today and every day until September 30. Leave messages and call back if the line if busy or the mailbox is full!
Use hashtags #SaveMedicaid, #ProtectOurCare, #NoCutsNoCaps, #KillTheBill
2. SUBMIT TESTIMONY TO THE SENATE FINANCE COMMITTEE IN OPPOSITION TO THE BILL
The Finance Committee will be holding a hearing on the Graham-Cassidy bill on Monday September 25 at 2:00pm. The hearing record needs to be filled with strong statements of opposition from organizations and individuals who share their personal stories about the potentially devastating impact of this bill.
Use this as an opportunity to tell your personal story; include photos in the document as well!
This testimony should be typewritten, single-spaced and not longer than 10 pages in length.
The following information must be included on the first page of your statement:
Title Of Hearing: Graham-Cassidy Bill Hearing
Date of the Hearing: September 25, 2017
Full Name (of individual or organization)
Copy your Senators and Representatives or their staff on your testimony.
3. SHOW UP AT HEARINGS, RALLIES, PROTESTS AND OTHER EVENTS
For those who live in the DC area, please consider attending next week’s press conferences, protests and hearings. For those outside of the DC area, find a local event (or create one!). You can find a list of events here. There is power in numbers!
4. PARTICIPATE IN THE NATIONAL DISABILITY CALL-IN DAY TO SAVE MEDICAID ON MONDAY, SEPTEMBER 25
Join people with disabilities, families, and advocates around the country as we make sure our Senators’ phones are ringing off the hook with opposition to the Graham-Cassidy bill on Monday September 25. Call the Senate switchboard at: 202-224-3121 and use the sample talking points here. You can also register for this event through Facebook here.
Please share this information widely and encourage your friends and family to advocate against this bill. Together, we can defeat it but we need to ACT NOW. Thank you for your advocacy efforts!
NDSC Policy & Advocacy Team Transitions to New Leadership
September was a month of big changes for the NDSC Policy Team. Heather Sachs has joined the team as NDSC’s new Policy & Advocacy Director. Heather has spent over a decade advocating for the rights of individuals with Down syndrome and was formerly the Vice President of Advocacy & Public Policy for the National Down Syndrome Society. She also serves as the Senior ABLE Advisor for the ABLE National Resource Center. Heather is the parent of a 12-year old daughter with Down syndrome and has been collaborating with members of the NDSC Policy Team on many issues for years. Heather states, “I am thrilled to join NDSC and am grateful to Interim Policy Director, Stephanie Smith Lee, for her diligence in laying the groundwork for this transition, streamlining many processes, and creating new initiatives such as the NDSC Public Policy Advisory Council.” Heather is honored to be working with some of the “superstars” of the disability community and states, “The level of expertise and professionalism of NDSC’s Policy Team is unparalleled, and we all share the same passion and commitment to helping people with Down syndrome and their families break down barriers and open doors to opportunities to maximize their full potential.”
Pictured from left to right: Susan Goodman, Stephanie Smith Lee, Ricki Sabia and Heather Sachs
Other members of the NDSC Policy Team include Senior Policy Advisor, Stephanie Smith Lee, whose experience with post-secondary education is unmatched; Senior Education Policy Advisor, Ricki Sabia, who tirelessly works to improve legislation for K-12 students (including ESSA at both the national and state levels); and, Senior Policy Advisor, Susan Goodman, whose efforts have greatly impacted the self-determination movement for individuals with disabilities to live independently. Susan has led the policy and advocacy efforts of NDSC for over 16 years and will retire at the end of 2017. She will stay involved as a founding member of NDSC’s Public Policy Advisory Council.
Along with a new leader, NDSC has officially changed the name of the Governmental Affairs Team to the Policy & Advocacy Team. You’ll notice that this name change is also reflected in the title of the Newsline and the NDSC dedicated advocacy Facebook page, NDSC Policy & Advocacy. We believe that this new name more accurately reflects what we do and how we have been serving the Down syndrome community. The term “Governmental Affairs” typically implies engaging public officials on issues of importance to an organization – essentially, lobbying. While we certainly lobby and engage public officials, we do so much more that was not reflected by the former name. We proactively influence Policy through our expertise across many subject areas and our emphasis on cross-disability collaboration, and we strive to educate individuals with Down syndrome and their families about how policy impacts or has the potential to impact their lives. “Advocacy” is always at the forefront of our actions, both as parents and as disability professionals – we tell our personal stories and the stories of our constituents, and we work with people with Down syndrome and their loved ones to teach them how to effectively tell their own stories to effect change at all levels of society.
Medicaid and Health Care Fight is Back ON!
Just when we thought that Congress’ proposals to repeal the Affordable Care Act (ACA) and make massive cuts and caps to Medicaid had been defeated and Congress was working towards bipartisan reforms on health care insurance market stabilization, Senators Graham (R-SC), Cassidy (R-LA), Johnson (R-WI) and Heller (R-NV) introduced an amendment on September 13, 2017 that includes devastating cuts and per capita caps to the Medicaid program. The home and community-based services through Medicaid upon which people with Down syndrome rely to live and work in the community are particularly at risk because they are “optional” services that are likely to get cut first. You can read the text of the bill here and get detailed information about this bill and the advocacy efforts to defeat it here.
NDSC, along with the broader disability community, is on high alert again and has reactivated our advocacy efforts to defeat this latest Graham-Cassidy bill. Read our alert here. We urge our community to step back into this fight by calling your Senators and Representatives, interacting with them on social media and meeting in-person with them and their staff to share your personal stories and state why such a restructuring of Medicaid would be devastating. Tell them to oppose the Graham-Cassidy bill or any other bill that cuts, caps and/or block grants Medicaid and diminishes protections for pre-existing conditions.
Children’s Health Insurance Program (CHIP) Extended for Five Years
On September 12th, the Senate announced a bi-partisan agreement to extend the Children’s Health Insurance Program (CHIP) for five years. The funding for this program runs out at the end of September. This program was passed in the 1980’s for children in families that are over the income limit and cannot qualify for Medicaid, but whose income is not high enough to afford other coverage. It affects insurance coverage for children with disabilities. Read more here.
Every Student Succeeds Act (ESSA)
States have been developing their plans to implement ESSA, the law that replaced the No Child Left Behind Act in December 2015. These state ESSA plans are very important for students with disabilities because they determine how schools will be held accountable for the academic performance of all students, as well as specific subgroups—including the disability subgroup.
Sixteen states and D.C. submitted ESSA plans to the U.S. Department of Education (ED) for approval in April and May. Most of these plans have now been approved. You can find the approve plans and other information by clicking on the state names here. The other state plans were required to be submitted to ED on September 18, 2017. However, some extensions have been granted because of the hurricanes.
For the past year, NDSC has been raising concerns with state departments of education about provisions in their plans, which we believe weaken accountability for students with disabilities, and in some cases violate the law. You can read the NDSC and Advocacy Institute analyses here.
NDSC is also concerned that even after submitting their ESSA plans to ED, states may request waivers from some of the accountability and assessment rules under ESSA. It is important for you to know that your state must provide the public with notice and a reasonable opportunity to comment and provide input on any waiver request. The state must also submit the comments and input to the Secretary of Education, with a description of how the state addressed the comments and input. Florida and New York have already announced plans to submit waiver requests and NDSC has been helping state affiliates with advocacy in opposition to these potential waivers. Read more here and here.
Regulatory Rollback of Important Guidance – Executive Order 13777
Earlier this year, President Trump signed Executive Order 13777 to alleviate “unnecessary regulatory burdens” and establish agency-by-agency task forces to review existing regulations (rules that guide implementation of laws). The U.S. Department of Education (ED) requested input on “regulations that may be appropriate for repeal, replacement, or modification.” They are also looking at rescinding non-regulatory guidance. NDSC submitted comments on our own, and also as part of a disability coalition and a broader civil rights coalition, to oppose this process, which could rollback large numbers of critically important regulations and guidance documents.
In the NDSC comments we stressed that the Civil Rights Act of 1964, the Individuals with Disabilities Education Act (IDEA, the Rehabilitation Act Rehabilitation Act of 1973 (particularly Section 504), the Every Student Succeeds Act (ESSA), the Higher Education Act (HEA), the Americans with Disabilities Act (ADA), the Workforce Investment and Opportunity Act (WIOA) amending Title 1 of the Rehabilitation Act, and other laws that impact education are civil rights laws and, as such, require federal regulatory and oversight authority. We also pointed out that regulations and non-regulatory guidance provide details on how states are expected to implement a law and are essential to assuring states and districts fulfill their obligations to children with disabilities and their families. In conclusion, we urged ED not to repeal, replace, or modify any regulations or guidance under these laws. The regulations have already been subjected to extensive review and public comment under the Administrative Procedures Act.
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. To date, there is no companion bill in the Senate.
Back to School!
September is here and school has started. At NDSC we love to see all the back-to-school photos shared on Facebook. Great resources for navigating the school year ahead may be found on the Wrightslaw.com website. Particularly helpful is their most recent newsletter. “Strategies and Tips for a Successful School Year” outlines key steps for positive advocacy and your child’s success.
Tips for High School Seniors and their Families about College
By Stephanie Smith Lee
Are you a high school senior and thinking about going to college next year? Here are some tips for what you can do this year.
Communication: Do you have a cellphone? Be sure you know how to text and “drop a pin” to show where you are, and make sure key people are in your contact list. Know how to receive and send emails and open attachments.
Manage your schedule and calendar, with a paper schedule or electronics such as a cell phone.
Find out more about your learning style and what helps you learn.
Write down the jobs you have had, extracurricular activities, sports, community activities and favorite classes.
Think about whom you would like to ask to write you a letter of recommendation.
Talk with your family about:
Would it be best to live at home or at college?
What type of location would be good – nearby, in your state, in another state and would you like a suburban, urban or rural area?
What size college appeals to you?
Finding the right fit:
You may want to take one class at a community college, college or university, or you may wish to enroll in a comprehensive program for students with intellectual disabilities. To find a list of options, see the college database on the Think College website. Click on links to specific programs of interest to learn more. Admissions requirements differ.
Call, email, and/or visit your top choices and get your complete application in on time.
Federal financial aid:
Families can fill out the Free Application for Federal Student Aid (FAFSA) for next school year starting on October 1, 2017 and experts advise submitting it right away to have the best chance for federal aid.
Due to advocacy by NDSC, other organizations, and many advocates, students with intellectual disabilities attending approved programs at colleges or universities may now receive federal grants and work-study jobs (but not loans). Read herefor more information and the list of approved programs.
Good luck with your senior year and the college search process!
Spotlight on Grassroots: #321Advocate Facebook Group
Social media – and particularly, Facebook — is a very powerful tool to connect with other advocates and mobilize for a common cause. There are some very large Facebook groups that provide a forum for Down syndrome advocates to learn and connect with one another on specific issues, such as Inclusion for Children with Down syndrome (over 13,000 members), Educational Strategies for Children with Down syndrome (over 6,000 members) and Behavior Intervention for Children with Down syndrome (over 4,000 members). These are helpful and informative but their large size and broad membership often dampen their advocacy efforts.
A new closed Facebook group that sprung up in May 2017 for individuals with Down syndrome and their family members has gained traction and praise for its focused, respectful and effective grassroots mobilization efforts. The Facebook group #321Advocate, which has grown to nearly 500 members, was started by parent-advocate Jawanda Mast initially as a quick way to get out information and alerts about the proposed repeal of the Affordable Care Act and Medicaid cuts (the group also covers other topics affecting the Down syndrome community). Jawanda, along with other volunteer moderators Julie Ryan-Silva and Chris Newlon, diligently ensure that that the group stays on-topic (advocacy-related posts only), that members have a constructive, respectful dialogue, and that the forum not be used for solicitations or personal attacks on individual legislators or groups. The NDSC Policy & Advocacy Team is very active in this Facebook group.
The members of #321Advocate are passionate and jumped right into the healthcare fight. One member who is a documentary film producer, Daniel Sheire, sent out a request to the #321Advocate members to share their personal stories about Medicaid and created a short video to #SaveMedicaid. Daniel explained, “When we released our video on Facebook, #321Advocates immediately started sharing it. Those shares ended up getting our message to over 400,000 views in just a couple of days.” He added, “It would have never gotten that kind of reach if the group hadn’t engaged with such enthusiasm.”
Are you an individual with Down syndrome or a family member who is interested in advocacy? If so, then please consider joining the #321Advocate Facebook group, even if you have very little experience with advocacy. There is much to learn from each other and many more battles to fight. Forums like #321Advocate help advocate as a Down syndrome community – we are stronger together!
Your advocacy is needed again to defeat a last-ditch effort to repeal and replace the Affordable Care Act (ACA) and gut Medicaid by restructuring it to a block grant and cap/cut system that has gained momentum again on Capitol Hill. Senators Graham (R-SC), Cassidy (R-LA), Johnson (R-WI) and Heller (R-NV) introduced an amendment on September 13, 2017 that includes devastating cuts and per capita caps to the Medicaid program which are substantially the same as the health care proposals that were defeated earlier this summer, and we need to reinvigorate our advocacy efforts immediately. Things are moving very quickly and a vote could come as early as next week!
Once again, we need the entire Down syndrome community to flood Senate offices with calls, emails and reach out via social media to oppose #GrahamCassidy and to #SaveMedicaid and make sure there are #NoCutsNoCaps. Not only are people with pre-existing conditions in jeopardy due to this latest bill, but the home and community-based services through Medicaid upon which people with Down syndrome rely to live and work in the community are particularly at risk because they are “optional” services that are likely to get cut first. You can read the text of the bill here and get detailed information about this bill and the advocacy efforts to defeat it here.
Go to www.senate.gov to find your Senators and here to find their Twitter handles. Call to tell them to oppose this amendment and to continue to work in a bipartisan manner on health care and Medicaid reforms. Tell them that you are the parent of a person with a disability or a self-advocate and why Medicaid supports are or will be important to your family. We also encourage you to set up appointments with your Senator and Representative’s district offices as the Members will be home for a few days later in the week. It is important to connect with your Representatives too as this bill will move very quickly to the House if it passes the Senate (and will likely go straight to a vote).
Talking points are:
Oppose the Graham-Cassidy bill or any other bill that cuts, caps and/or block grants Medicaid and diminishes protections for pre-existing conditions.
Support the bi-partisan efforts around health insurance market stabilization and the Children’s Health Insurance Program (CHIP).
The home and community based services (HCBS) on which people with disabilities rely to live in the community and be employed are especially at risk because they are optional and could be eliminated.
People with disabilities and their advocates oppose any bill — be it a healthcare bill, the budget, or tax reform — that cuts or caps Medicaid or compromises coverage for people with pre-existing conditions.
Senators listed below are considered top and high priority. However, all Senators should be contacted.
Maine: Senator Collins (DC: 202-224-2523; local 207-780-3575)
Alaska: Senator Murkowski (DC: 202-224-6665; local 907-271-3735)
West Virginia: Senator Capito (DC: 202-224-6472; local 304-347-5372)
Arizona: Senator McCain (DC: 202-224-2235; local 602-952-2410)
Ohio: Senator Portman (DC: 202-224-3353; local 513-684-3265)
Arkansas: Senators Cotton and Boozman (Cotton – DC: 202-224-2353; local 501-223-9081; Boozman – DC: 202-224-4843; local 501-372-7153)
Colorado: Senator Gardner (DC: 202-224-5941; local 303-391-5777)
Indiana: Senator Young (DC: 202-224-5623; local 317-226-6700)
Iowa: Senators Grassley and Ernst (Grassley – DC: 202-224-3744; local 515-288-1145; Ernst – DC: 202-224-3254; local 515-284-4574)
Kansas: Senator Moran (DC: 202-224-6521; local 913-393-0711)
North Carolina: Senator Tillis (DC: 202-224-6342; local 704-509-9087)
North Dakota: Senator Hoeven (DC: 202-224-2551; local 701-250-4618)
Tennessee: Senators Alexander and Corker (Alexander – DC: 202-224-4944; local 901-544-4224; Corker – DC: 202-224-3344; local 901-683-1910)
PLEASE CALL TODAY AND EVERY DAY UNTIL SEPTEMBER 30 TO DEFEAT THIS BILL. Ask your friends and family in these states to make calls also. Thank you for your advocacy efforts!