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 email@example.com 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).