The NDSC annual convention is fast approaching (online registration closes June 29th). Join the NDSC policy team, parent and self-advocate leaders, and other experts in Sacramento, July 20-23. Register now!
Policy team members will be leading convention workshops focused on advocacy and key policy issues:
Empowering Effective Federal, State, and Local Advocates to Speak Up
What’s Happening in Washington, DC and What You Can Do
Universal Design for Learning (UDL): The Path to Meaningful Inclusion
Be an Informed Education Advocate: The Future Depends on It!
Intro to Inclusive Higher Education: What You Need to Know
Postsecondary Education Outcomes: The Future is Bright
Action Needed Today on Bill that would Dismantle Medicaid!
The Senate version of the American Health Care Act (AHCA) will be voted on as early as June 26th. Reports from Capitol Hill indicate that the Senate bill will look very much like the bill passed by the House of Representatives. That would be devastating to children and adults, with Down syndrome and other disabilities. Republican and Democratic governors are calling for a bi-partisan bill. The Senate bill is being drafted in secret with no transparency, no hearings or testimony from experts and will be released to other Senate members with very little review time before a vote.
It will change Medicaid from an entitlement system (everyone who meets the current eligibility requirement will be eligible to receive services) to a system in which the states would decide who receives what services and what they will receive. Services that individuals with disabilities need to live and work in the community could be lost. See the latest NDSC Action Alert (updated).
Advocacy in Action
“Advocacy can appear daunting. A task best left to those who know what they are doing, right? But here is the secret: No one knows how to do this better than you and me, the parents.”
Raquel Ross tells her story in the Summer issue of Down Syndrome News. See page 24 to read more!
Every Student Succeeds Act (ESSA)
ESSA, the federal law governing the education of all students, requires each state to develop a plan that describes how the state intends to identify schools needing improvement and what the state will do to help schools improve. States continue to release draft ESSA plans that will be submitted to the US Department of Education (ED) on September 18, 2017. NDSC and the Advocacy Institute have developed a guide with advocacy tips to help state advocates review their draft plans and submit public comments to strengthen them. A strong accountability system in your state ESSA plan will ensure that steps are taken to improve the academic achievement of underperforming students with disabilities. The guide is available here. We have been sharing this guide, through our fellow national organizations, with Parent Centers, Disability Rights organizations, University Centers for Excellence in Developmental Disabilities, the Arc, and other key disability organizations that are present in every state. However, it would still be helpful for you to share it directly with any statewide organization that you think will be engaged in the ESSA plan development process.
NDSC and the Advocacy Institute recently presented a webinar for the Association of University Centers for Disability (AUCD) to provide an overview of key ESSA provisions important to ensuring equity for students with disabilities, share issues identified in our analyses of many of the state ESSA plans and offer tips that are found in our plan review guide. You can view the webinar at https://www.youtube.com/watch?v=0Tv-AC8H6Fo&feature=youtu.be
ED has been reviewing the ESSA plans that were submitted in April. The peer reviewer comments and letters from ED to a few states have already been made public. You can use the interactive map to see which states have submitted plans. When you click on a state you will be taken to a page with a link to the state plan and any peer review comments and feedback from ED. Although it is good to see that ED is requiring a few positive changes to submitted plans, there are critical issues that ED is not asking states to change. Therefore, it is essential that stakeholders advocate for needed changes in the plans before submission.
IDEA Full Funding Act Introduced in the House
The bipartisan Individuals with Disabilities Education Act (IDEA) Full Funding Act (H.R. 2902) has been introduced in the U.S. House of Representatives by Reps. Jared Huffman (D-CA), David McKinley (R-WV), Timothy Walz (D-MN), David Reichert (R-WA), Kurt Schrader (D-OR), and John Katko (R-NY). Senator Chris Van Hollen (D-MD) is expected to introduce the bill in the Senate. This bill would increase spending over the next decade to bring the federal share of funding for special education up to 40 percent, the amount committed to when the law was first enacted in 1975. NDSC supports this legislation.
#AbleToSave Month is Coming in August!
NDSC will be participating in the August 2017 #AbleToSave ABLE Awareness campaign, spearheaded by the ABLE National Resource Center (ANRC), to blanket the country with information about ABLE and spur individuals with disabilities and their families to open ABLE accounts. ABLE accounts are tax-advantaged savings accounts that have the potential to significantly increase the independence and quality of life of individuals with disabilities without jeopardizing much-needed benefits such as Medicaid and Supplemental Security Income. There are nearly two dozen states that have already launched ABLE programs, most of which are available to qualified individuals with disabilities nationwide.
The primary goal of the #AbleToSave campaign is to increase awareness and education about ABLE accounts and to accelerate the amount of ABLE accounts opened across the country in the short- and long-term. All ABLE programs which have already launched or will launch in the near future will be participating in this information drive, as well as most national disability organizations. The campaign will consist of informational videos, webinars, social media messages and other resources to spread the word about ABLE accounts.
The ABLE National Resource Center is a collaborative among over 25 national disability groups and run by the National Disability Institute (NDI). It is an information clearinghouse about ABLE laws and programs, provides technical assistance to ABLE programs, serves as a liaison to federal agencies and financial institutions, and provides extensive resources on its website relating to ABLE. NDSC is proud to be one of the original members of the ANRC and is pleased to participate in this informational campaign!
Governmental Affairs Action Alert ~ June 13, 2017 (updated June 20)
NDSC attended a meeting on June 13 on Capitol Hill with Senator Bob Casey (D-PA) and key staffers who are working around the clock to try to save Medicaid. Since then we have continued to meet with Republican and DemocraticCapitol Hill staff and the latest information is that a vote could take place in the Senate as soon as June 26. Here is the resounding message:
“We are no longer in fire drill mode, we are in fire mode!”
The Senate version will not be made public until at most 24 hours before it comes to the Senate floor for a vote. At this point, it will be too late.
The Senate version will mirror the House version of the AHCA in many respects, including fundamentally changing the Medicaid system to cap and cut funding that the federal government will provide to the states.
Once the Medicaid structure is changed in this way, there will be no turning back. This will mean that states can decide who will receive Medicaid services and what services they will receive, and waitlists will grow exponentially. This means that the services that individuals with Down syndrome rely on to live and work in the community could disappear. It will greatly diminish funding available to pay for early intervention, therapy and other services in schools.
Changing the Medicaid structure will also mean that both Congress and the Administration can start to siphon off Medicaid funds every year, leaving the system in shambles.
The whole process of getting this “invisible bill” passed is set to start on June 26. That means we have 10 days to band together to prevent this “travesty of justice.” (as one staffer put it).
Here is what you need to do:
Call, email, tweet your Senators. Include a photo of you or your loved one who relies upon Medicaid and a brief explanation of how these cuts will hurt you or your family. Use the hashtags #NoCapsNoCuts and #SaveMedicaid
Go to your Senator’s local offices. Meet with staff. Print out your story and leave it with them.
Call your relatives and friends in other states and ask them to take action on your behalf. Main target states are: Alaska (Sen. Murkowski, Sen. Sullivan), Nevada (Sen. Heller), Maine (Sen. Collins), West Virginia (Sen. Capito).
Additional targets are Arizona (Sen. Flake), Colorado (Sen. Gardner), Ohio (Sen. Portman), Pennsylvania (Sen. Toomey), Louisiana (Sen. Cassidy), Arkansas (Sen. Cotton). ALL Republican Senators should be blanketed with calls and emails, though. We only need a handful of Republican Senators to break with party lines and vote against this bill.
One call or contact is not enough. Call them EVERY. SINGLE. DAY. for the next 10 days.
This is not a false alarm. As Senator Casey emphasized this morning, “This is one of the most important periods in history to band together to stop a terrible result for the American people.”
Ten days are all we have left to save the services that give people with disabilities true independence, productivity and a chance to have the opportunities that people without disabilities have.
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!
We need YOUR voice to join in the fight against the current attempts to drastically change the health care structure and Medicaid funding mechanism that would be devastating for our loved ones!
The National Down Syndrome Congress (NDSC) has joined with other national disability groups to aggressively fight the fast and sweeping health care reform efforts occurring on Capitol Hill. NDSC has prepared a detailed analysis of how the American Health Care Act (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.
WHY THE URGENCY?
Yesterday, the Congressional Budget Office (CBO) released its score (estimated cost and impact of proposed legislation) of the version of the AHCA that passed the House of Representatives on May 4, 2017 and is currently being considered by the Senate. Similar to the original score of the AHCA in March 2017, the updated score estimates that $834 billion will be cut from Medicaid over the next decade, and that 23 million more people would be uninsured. People with pre-existing conditions such as Down syndrome are likely to be limited in their choice of health care plans, pay much higher premiums, and lose many essential health benefits that are currently covered (click here for more information).
NDSC is hearing that, like in the House version of AHCA, the Senate is seriously considering removing the entitlement from Medicaid and restructuring the Medicaid program to a block grant or per capital cap model. This will significantly diminish the quality of life for individuals with Down syndrome and other disabilities, who will receive fewer:
Supports to live and work in the community, such as assistance with the activities of daily living (such as eating, bathing, dressing, preparing meals, housekeeping, preparing medication), as well as home health services, transportation and supported employment services; and
Special education-related services in schools since schools rely upon Medicaid for reimbursement for services such as physical therapy, speech therapy and occupational therapy.
The Senate is not likely to hold public hearings on this bill, so our voices need to be loud and clear – #NoCutsNoCaps! and #SaveMedicaid!
WHAT CAN YOU DO?
Make your voice heard by calling your Senators’ offices today! You can find contact information for your Senators here: https://www.senate.gov/senators/contact/
Request to schedule an in-state meeting with staff (or the Senator herself when they are home next week for Memorial Day recess)
Ask if there are upcoming town hall meetings and SHOW UP!
Tell Your Senator or Staff:
You are a constituent and you are calling on behalf of yourself or a loved one with Down syndrome;
Any block grants or caps to Medicaid will cause states to strip away critical supports upon which you or your loved one with Down syndrome will need to learn, live and work in the community, so you are urging your Senator to look for other ways to finance health care reform efforts instead of restructuring Medicaid.
Call the Senate offices, send emails, fax letters, use social media (tag the Senator and use the hashtags #NoCutsNoCaps and #SaveMedicaid). DO SOMETHING AND DO IT NOW!! Once the Medicaid entitlement is removed, it will be gone forever. This could set the Down syndrome community back decades!
At this time, rooms at the NDSC Convention rate at all three contracted hotels are sold out for most nights of the convention. While there is no guarantee rooms will open up, the NDSC is managing a waitlist to assist families attending the convention in securing a reservation. Again, we cannot guarantee a room meeting your needs will become available; however, when and if a cancellation occurs we will notify you in the order in which your application has been received. Traditionally, cancellations have occurred in late June or early July, so your patience is appreciated. As a reminder, only families registered for the convention are able to reserve a room at the convention rate. If you would like to register for the waitlist, please click here.
PRE-CONFERENCE SPOTLIGHT: Careers in Entertainment and Media
Talent Agent, Gail Williamson and Producer, Brian Donovan will be in Sacramento presenting on what it takes to break into the entertainment industry. Come hear first-hand from industry professionals on how to best advocate for your future movie star, singer, songwriter, film producer, etc. This pre-conference requires a separate registration and is open to parents, siblings, grandparents and self-advocates. Click here for more details on this and our other pre-conference offerings.
SOUVENIR JOURNAL – Advertising Starts at Just $75
Looking for a way to spotlight your child with DS or advertise your product? The Souvenir Journal reaches every attendee, exhibitor, and sponsor participating in the convention and is a perfect opportunity to send a message. Messages may provide information, recognition, good wishes or may memorialize an individual. Messages start at just $75. Click here for the application.
FULL-DAY EDUCATOR CONFERENCE – Friday, July 21
Did you know the NDSC is hosting its 2nd annual Educator Conference? On Friday, July 21 from 8:45 am to 4:15 PM at the Sacramento Convention Center, teachers, paraprofessionals and administrators working with students with Down syndrome will have the opportunity to participate in this full day experience. Experts on behavior, technology, literacy and modifications and accommodations will provide attendees with proven strategies and research-based content. CEU’s and lunch will be provided. Click here for more details on the speakers and topics or to register. Parents, please help us spread the word by passing this on to your child’s teachers and administrators!
REGISTRATION IS STILL OPEN
If you haven’t registered yet or have started a registration but haven’t paid, there is still time to take advantage of best value pricing. Click here to register now. Or, if you have completed your registration but want to add a pre-con, sapphire celebration tickets, t-shirts, recordings, etc., please call the NDSC office from 9 AM to 5 PM Eastern, and they will be happy to assist you at (800) 232-NDSC.