As part of our ongoing efforts to expand effective public policy efforts, NDSC is very pleased to announce a new advisory group consisting of a self-advocate and parents who are outstanding experts in public policy impacting individuals with Down syndrome and their families. The Public Policy Advisory Council will offer NDSC advice on public policy positions, priorities for advocacy, and grassroots strategies.
The Council held its first meeting on May 24 and provided valuable insights on policy issues such as health care and education, as well as advocacy strategies.The chair, Tonia Ferguson, stated, “This an exciting time for NDSC in creating this new advisory group and I look forward to chairing this group of distinguished thought leaders.” Other members are: Madison Essig, Connie Garner, David Hoppe, Nadine Maes, Heather Sachs, Marilyn Tolbert, Madeleine Will, and Valerie Williams. NDSC staff and consultants involved include: David Tolleson, Susan Goodman, Stephanie Smith Lee, and Ricki Sabia.
NDSC Calls on Down Syndrome Community to Unite Against AHCA Proposals
Your voice is urgently needed to fight against the current attempts to drastically change health care and dismantle Medicaid contained in the House-passed American Health Care Act (AHCA)! Read our action alert here. We have prepared a detailed analysis of how the AHCA and proposed restructuring of Medicaid will negatively impact the Down syndrome community, as well as a basic glossary to help you understand many of these terms.
The Congressional Budget Office (CBO) estimates that the AHCA would cut Medicaid by $834 billion over ten years, which will have a dramatically negative impact on health care, employment and community services for individuals with Down syndrome and their families. Senior Education Policy Advisor, Ricki Sabia, was interviewed by LRP Publications’ SpecialEd Connection about the impact of the Medicaid cuts on students with disabilities and schools. “The need is still there, and there are costly consequences of not providing critical services, unless you ignore the need,” Sabia said. She added that without sufficient Medicaid funding for critical employment and independent living supports as students transition out of school, opportunities to pursue college and competitive integrated employment will be greatly diminished. “This impact on post-school outcomes would undermine the purpose of the IDEA, the ESSA, and the Workforce Innovation and Opportunity Act,” Sabia said.
Advocates Make a Difference!
Julie M. Gerhart Rothholz spoke eloquently at a press conference at the US Capitol with US Bob Senators Casey and Maggie Hassan regarding potential Medicaid changes and the negative impact these changes would have on services provided in the schools to students with disabilities. Julie’s son is a kindergartner who happens to have Down syndrome. She spoke about her belief in the possibilities for Evan in the future and the importance of school-based services, paid for by Medicaid, that will help Evan achieve those dreams.
To watch on YouTube (Julie’s part starts at 13:36): https://www.youtube.com/watch?v=kohYvBqN_kc
NDSC Leads State and Local ESSA Implementation Advocacy
At the end of 2015, the Every Student Succeeds Act (ESSA) replaced the No Child Left Behind Act (NCLB) as the federal law governing the education of all students, including those with disabilities. ESSA requires each state to develop a plan that describes how the state intends to identify schools in which all students, and/or student subgroups (like the disability subgroup), are not receiving a fair, equitable and high-quality education and what the state will do to help schools improve. A strong ESSA plan will help encourage meaningful implementation of the Individuals with Disabilities Education Act (IDEA), the federal special education law.
State Tools Provided by NDSC:
In recognition of the importance of these state ESSA plans, NDSC has been monitoring their development. You can find out about your state’s status with respect to its plan, as well as any public input opportunities, in this NDSC document. Seventeen states have submitted their ESSA plans to the U.S. Department of Education (ED) for review. See the list and links to plans at https://www2.ed.gov/admins/lead/account/stateplan17/statesubmission.html.
The rest of the states will wait for the next submission date, which is September 18, 2017.
NDSC, in partnership with the Advocacy Institute (AI), has been analyzing many of these state plans to inform the US Department of Education and Congress about the ways in which states are not following the letter of the law, as well as failing to meet the equitable goals of ESSA for historically underserved students, like those with Down syndrome. We are also sharing these analyses with parents and disability organizations to help them with their state advocacy efforts, as well as submitting the analyses directly to the state departments of education. The analyses can be found here. In addition, we are in the process of developing a detailed guide to help disability organizations in other states analyze their draft plans and advocate for improvements. NDSC and AI are also responding to requests from Members of Congress and their staff for information about what we are are discovering in our analysis of the state plans.
Local Tools Provided by NDSC:
Schools districts will also have to develop ESSA implementation plans, which will provide another opportunity for advocacy. NDSC and AI have developed a document describing key requirements for the LEA plan and providing advocacy tips. It is posted at http://www.ndsccenter.org/wp-content/uploads/ESSA-LEA-advocacy-5-1-17.pdf.
What Can Advocates Do?
ESSA plans are required to be developed with meaningful stakeholder consultation. Parents individually, or together with disability and civil rights organizations, can provide comments on their states’ draft plans and ensure their state is considering the input of the disability community in the final version. Sample NDSC comments can be found here. Even if important strategies, such Universal Design for Learning (UDL) and best practices for inclusion, do not make it into the state plans, parents can continue to advocate that these strategies will help the state implement ESSA. UDL is specifically mentioned in the ESSA law. Parents should also provide input on their district’s LEA plan with the help of the LEA tool described earlier.
For another successful Advocacy story, from NDSC member, Raquel Ross, see the next issue of Down Syndrome News, coming out next month!
Comments on idea.ed.gov Website
Recently the US Department of Education requested that the public provide comments on the ED website that contains important information about IDEA. NDSC commented as follows:
“The National Down Syndrome Congress (NDSC) supports all the recommendations made about the idea.ed.gov website by the Consortium for Citizens with Disabilities (CCD) Education Task Force. Read about it here.
In addition, NDSC offers the following recommendations: The CCD comments discuss linking various U.S. Department of Education (ED) web pages together through the idea.ed.gov website. We recommend adding the IDEA monitoring web pages to this list. We also recommend that ED maintain and update the topic briefs, video clips, training materials, dialogue guides, Q&A’s, presentations and webcasts, as well as add these tools for new topics. These tools help families and educators understand complex legislative and regulatory language as it relates to real-world practice.”
NDSC Calls for Improvements to IDEA Monitoring of IDEA
In response to a U. S. Department of Education Opportunity to comment, NDSC called for special education monitoring to increase the focus on inclusion and competitive integrated employment, and to improve transparency and parental involvement in developing and evaluating monitoring at the state and local level. Read the full NDSC comments here.
Policy Implications of Upcoming Film on Intelligence
Filmmaker Dan Habib, who also created the films Including Samuel and Who Cares About Kelsey, is working on a new film with the working title of Intelligent Lives. The completed film will feature three young adults, including one who has Down syndrome, to explore how our narrow views of intelligence have led to the ongoing segregation of people with intellectual disabilities. You can see a preview of the film at https://iod.unh.edu/projects/intelligent-lives.
NDSC recently participated in a summit with Dan and a group of disability advocates, including self-advocates, to discuss the potential implications of the film for education, transition and employment policy. The plan is to engage many different audiences including public policy makers and to provide education and outreach materials for educators, employers, youth, families, and other stakeholders. Stay tuned!