NDSC has been linked to Down Syndrome Awareness Month literally since the day it was established. In 1984, when President Reagan signed the proclamation creating Down Syndrome Awareness Month, NDSC’s Executive Director and President were in the Oval Office. Both before and since, NDSC has worked to educate the general public, healthcare professionals, educators, and elected officials about what it really means to have Down syndrome in contemporary America.
Recently, our staff traveled to New Orleans to begin preparations for next year’s NDSC Convention, June 25-28. Hosted in one of America’s most unique locations, this year’s event looks to be one of our most memorable “family reunions” with a New Orleans second line parade; free admission to The Aquarium of the Americas, Audubon Zoo, and the Insectarium for all children ages 2-12, with half-price admission for guests age 13 and over; and, free admission to New Orleans City Park and Storyland Theme Park, with unlimited ride wristbands for the first 3,000 guests!
Autism CARES Act Passes Senate and Heads to White House!
Great news! On September 19, 2019, the Autism CARES Act of 2019 (H.R. 1058) passed the Senate unanimously and now heads to the President’s desk for signature. Championed by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House and Senators Mike Enzi (R-WY) and Robert Menendez (D-NJ), the bill provides $1.8 billion over five years and will authorize autism-related programs at the National Institutes of Health, the Centers for Disease Control and the Health Resources and Services Administration.
Mission Moment With NDSC Executive Director, David Tolleson
For most of the country, August means back to school. Because of that, it’s natural to focus on why inclusion is so important. Regardless of how many chromosomes we have, we all do better when we’re included – in school, work, faith communities, and social settings. And it’s not just individuals who benefit. Our society becomes stronger when everyone is included, when everyone can contribute based on their gifts, and when we can all celebrate both our commonalities and differences.
Autism CARES Act: Advocacy Needed Now for Reauthorization!
The Autism Collaboration, Accountability, Research, Education and Support Act (also known as the Autism CARES Act) will sunset (expire) on September 30, 2019, if it is not renewed (reauthorized) by Congress by then. The current Autism CARES Act (S. 427/H.R. 1058) provides $260 million annually to autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). These programs benefit all people with developmental disabilities, including all people with Down syndrome and especially the approximately 18% of people with Down syndrome who have a co-occurrence of autism.
NDSC is Working Hard to Protect LRE (Least Restrictive Environment)
Last week, NDSC received word that the US Department of Education (ED) was planning to release guidance in the immediate future that would likely make it more difficult than it already is for children with disabilities to be educated in the least restrictive environment (LRE) under the Individuals with Disabilities Education Act (IDEA). Immediately, the NDSC Policy Team and members of the NDSC Policy Council began to take action to protect the legal presumption in IDEA that all children with disabilities will be educated in the general education classroom; except in the rare circumstance that the child cannot get a satisfactory education in that environment even with the provision of supplementary aids and services.
What a great time we had in Pittsburgh! It was fantastic to meet so many of you – our team made some wonderful memories with the families in attendance.
Speaking of our team, I’d be remiss if I didn’t give a HUGE shout-out to my NDSC colleagues, our Board of Directors, Convention Planning Committee, the Pittsburgh Host Committee, and the hundreds of volunteers who made our 47th annual convention successful.
Money Follows the Person (MFP) Program Reauthorization Passes House; Calls to Senate Needed Now!
On June 18, the House passed a bill that included 4.5 years of funding for the Money Follows the Person (MFP) program. This is great news, but it is time for the Senate to act! Please call your Senators and urge them to pass the EMPOWER Care Act (S. 548) to reauthorize MFP. You can use our Action Alert.
The Money Follows the Person (MFP) program is a Medicaid program that has helped more than 75,000 people with disabilities and seniors move from nursing homes and other institutions into the community. First authorized in the Deficit Reduction Act of 2005 with strong bipartisan support, the MFP Demonstration program was designed to assist states with (1) supporting Medicaid enrollees who want to transition from institutional settings to community-based settings; and (2) developing infrastructure to promote and enhance access to Home and Community Based Services (HCBS). HCBS provides critical supports to people with disabilities to enhance their ability to be included and integrated into their communities instead of receiving care in restrictive, institutional settings. Each state can decide how to use the MFP funds, which they have used to expand or enhance HCBS programs, reduce waiting lists and fund housing supports.