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!