Your NDSC Board and Staff recently returned from a very productive few days of meetings in this year’s Convention host city of Pittsburgh. Although it was a bit snowy during our visit, it’s easy to see why your family will fall in love with this beautiful destination come June. Pittsburgh has a spectacular natural setting its compact and easily walkable downtown district lies between the city’s famous three rivers, all ringed by mountains. There are wonderful museums (I even got to see Mr. Rogers’ famous cardigan sweater), attractions, and more restaurants than you can shake a stick at. Of course, within a short drive, there’s even more to see, such as Frank Lloyd Wright’s famous Fallingwater.
The 116th Congress convened on January 3, 2019. The House of Representatives shifted from Republican to Democratic control, and there are over 100 new Members of Congress. We are optimistic that the change in control of the House, which has led to a divided government (as opposed to one party controlling the White House and both chambers of Congress), will present more proactive opportunities to implement NDSC’s policy agenda.
All bills that did not pass during the 115th Congress are finished. Some will be re-introduced and look similar, some will be changed significantly, while others may just be dropped entirely and not re-introduced. Cosponsors will need to be enlisted again, and new members and their staffs need to be educated on the issues salient to our community.
NDSC’s Mission Moment – Reflecting on 2018 and Looking Forward to 2019
with Executive Director David Tolleson
Happy New Year!
This year is off to a great start, as NDSC recently received a grant of $500,000 over three years to expand our ongoing work in rural, tribal, and urban outreach, and to take our renowned Educators Conference on the road. We are so grateful for this wonderful gift and appreciate that the private benefactor recognizes the transformative nature of NDSC’s educational programs for parents and professionals. For nearly five decades, NDSC has been the Down syndrome community’s leading information and advocacy resource–one particularly recognized for its caring, family-oriented approach.
Texas Court Rules Affordable Care Act Unconstitutional
The National Down Syndrome Congress (NDSC) is very concerned by the recent ruling issued by a federal judge in Texas in the case Texas v. United States, which struck down the Affordable Care Act (ACA) as unconstitutional. The Texas court ruled that the ACA’s individual mandate is unconstitutional, and because the mandate cannot be separated from the rest of the law, the rest of the ACA is also invalid. (Legal wonks can read the actual opinion HERE; or a summary HERE)
In striking down the ACA, the Texas judge reasoned that in 2012, the Supreme Court upheld the coverage mandate because of the Congress’s power to tax. In the tax reform package passed by Congress last year known as the Tax Cuts and Jobs Act of 2017, the tax penalty for failing to comply with the individual mandate to maintain coverage was removed. As a result of this removal, the Texas court reasoned that the mandate is no longer a “tax” so the legal underpinning for the ACA has been eliminated. Even more controversial in his ruling was his determination that the mandate is “essential” to the rest of the law, so without the mandate, the entire law becomes invalid. This includes the provisions protecting coverage for people with pre-existing conditions and the ability for young people to stay on a parent’s health plan until age 26.
NDSC’s Mission Moment –Reflecting on 2018 and Looking Forward to 2019
with Executive Director David Tolleson
I love December! The food, the festivities, the family, and the friends – it’s such a great time of year! It’s also a good time to look back on the year that’s drawing to a close and to think ahead to the new one just around the corner.In 2018, your NDSC team focused on expanding service delivery on multiple fronts. This year’s NDSC Convention – already the largest of its type in the world – hit a new attendance record. It is both our joy and privilege to host the Down syndrome community’s largest annual family reunion, and we take that responsibility seriously. Knowing that not everyone can attend the Convention, we’ve begun taking our programs on the road, hosting successful Rural Outreach conferences in California and Michigan. We also made our resource-rich website mobile-ready, so everyone can access its wealth of information easily.
As a result of the midterm elections, the House of Representatives will shift from Republican to Democratic control in the 116th Congress, which will begin in January 2019. The Senate will remain under Republican control with an increased Republican majority. The party that has the majority of members in the House or Senate has substantial power to set the agenda, chair committees, and decide what bills will be considered for hearings and markups. The majority also has more members on each of the committees. The House has significant authority over appropriations and oversight of existing laws and regulations as well as oversight over the executive branch in general.
It is unknown exactly how this divided Congress will impact policy, but we believe that Congress will now be less likely to prevail in efforts to repeal the Affordable Care Act or to cut or significantly alter Medicaid. Continued ideological differences and partisanship could possibly lead to ongoing gridlock, but we are hopeful instead that the new balance of power will lead to more bipartisan action. For an analysis of changes we can expect in House and Senate committee leadership and their impact on policy, see this document prepared by our colleagues at The Autism Society, HERE.
NDSC’s Mission Moment – November is the Time to Give Thanks
with Executive Director David Tolleson
As Thanksgiving 2018 approaches, I find myself reflecting on the past year and the people that I am thankful for in my role as the NDSC’s Executive Director.I am thankful for those who have committed themselves to advancing our mission to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome. We are truly blessed to have such a large network of people focused on executing our vision of a world with equal rights and opportunities for people with Down syndrome.
Advocacy Needed: Help Us Get These Bills Passed in 2018!
The 115th Congress ends in December, and NDSC is working around the clock along with other disability groups to get several bills across the finish line. As explained below, the EMPOWER Care Act (S. 2227/H.R. 5306) and the ABLE Age Adjustment Act (S. 817/H.R. 1874) have the potential to positively impact many peoples’ lives, and their passage in this Congress is important to the sustainability of their programs. Bills that do not pass before the end of 2018 will need to be reintroduced in the next Congress, and the process of adding cosponsors, having committee hearings and trying to find a vehicle for passage starts all over again. We have updated NDSC Action Alerts on these issues. Please take a few moments to call and/or email your elected officials and ask them to support the EMPOWER Care Act and the ABLE Age Adjustment Act and pass them this session!
The month of October was designated as Down syndrome Awareness Month in 1984 by President Ronald Reagan. We’ve seen a lot of changes since then – the average life expectancy of individuals with Down syndrome growing from 25 to 60; inclusive education practices increasing; and self-advocates living independently and working in their communities. Many families use October as a time to bring awareness to their classrooms and communities. At the NDSC we promote Down syndrome awareness every day!
The mission of the National Down Syndrome Congress is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.
Many people view the NDSC as “the convention people”, and it’s true, we have an amazing annual convention – the largest of its kind in the world. However, we also have a staff and board with a vast knowledge base, as well as a Professional Advisory Council that we turn to when we need special expertise. Whether you are a parent experiencing a diagnosis or wishing to make a difference on legislative policy; an adult sibling who has questions regarding guardianship and alternatives; or, a self-advocate wanting to discuss life options – we are here to help you every step of the way. We have a robust website and offer parent webinars and other resources. We provide support and materials to affiliate organizations and medical professionals, so they can help spread awareness and provide accurate and up-to-date information. We are the oldest national Down syndrome organization in the country, well known for reaching out to others and for helping anyone – member or not – because it’s the right thing to do, every month of every year.
Heather Sachs, NDSC Policy Director, and Lauren Camp, NDSC Policy Associate, attended a Congressional Briefing last week hosted by the Global Down Syndrome Foundation at the Rayburn House Office Building in Washington, D.C. Activists, scientists, medical professionals, and legislators discussed the increased risk of leukemia and the decreased risk of solid tumor cancers for individuals with Down syndrome and the need for increased funding into this phenomenon. Thank you to Global for organizing this briefing and taking the lead on this important research.
Pictured: Heather, Lauren, Frank Stephens (self-advocate and Global ambassador) and Michelle Sie Whitten, Global DS Foundation President & CEO
Pictured: Dr. Espinosa, Michelle She Whitten, a clinical medical expert. (Photo Cred: Michael Campbell Photography)