We’ll be there for you!
First and foremost, I hope this finds you and your family well. We know that these are challenging times, but I want you to know that we are here for you. Over the last few weeks, our work has continued – and in some ways increased. As always, we remain committed to bringing you resources, programming, and information that is useful to you and your family.
As we step into the hustle and bustle of the Holiday Season, and we prepare for the New Year, the National Down Syndrome Congress is hoping for “A little something extra” from you, our generous donors, for 2020!
Cada año, miles de personas de todo el mundo asisten a la Convención anual de síndrome de Down. La mayoría van para escuchar la información más reciente de expertos de renombre mundial. Para otros, son unas increíbles vacaciones. Sin embargo, para casi todos, es la sensación única de la gran reunión familiar del NDSC que contagia el fin de semana de la convención. Pero entendemos que cuando planifica un viaje puede ser estresante, así que utilice esta guía para planificar el viaje perfecto a una Convención NDSC.
Para preguntas, contacte a Mateo en Matthew@NDSCcenter.org
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.
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.
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.
Background
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.
The MFP program has been widely adopted – with 47 states participating since its inception – and has helped states to make significant progress on “balancing” their long-term services and supports systems to improve access for HCBS. The success of the MFP program has been widely recognized and documented, both in terms of effectively moving individuals from institutional to community-based care settings, reducing waiting lists for HCBS services, and savings states money (See Empower Care Act for more details).
Congress had passed stop gap funding for the MFP program in January 2019, but those funds will run out in September.
You can help support the passage of the EMPOWER Care Act by calling the main Capitol line at: (202) 224-3121 (voice) or (202) 224-3091 (TTY) and click HERE to send an email to your Senators. They must hear that their constituents strongly support the Money Follows the Person Program and need them to vote YES on the EMPOWER Care Act to #FundMFP!
Thank you for your advocacy efforts!
The NDSC Policy & Advocacy Team
• I am a resident of [Town, State] and your constituent. [I/my child/sibling/friend/co-worker, etc] is a person with a disability.
• I am calling to express my concern about the expiration of the Money Follows the Person (MFP) Medicaid program, and I am asking you to pass the EMPOWER Care Act and reauthorize Money Follows the Person through 2022
• MFP has enabled over 75,000 seniors and people with disabilities living in institutions to transition back to their communities.
• MFP is fiscally responsible – it has improved the quality of life for thousands of individuals while saving states money.
• The MFP program expired over a year ago, and states are running out of money for these services and already having to scale back. Congress had passed stop-gap funding in January 2019, but that funding will run out by September 2019. Without new funding, states will have to completely eliminate this program.
• Please help keep people with disabilities and the elderly in their homes and in their communities and reauthorize the Money Follows the Person program!
(1) Registering for NDSC Action Alerts- click “Quick Sign Up”
(2) Subscribing to the NDSC Policy & Advocacy Newsline
(3) Joining our national grassroots advocacy program, the National Down Syndrome Advocacy Coalition
(4) “Liking” NDSC Policy & Advocacy on social media Facebook and Twitter
Happy February!
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.
Valerio catoia, de 17 años de edad, ganó la medalla campeón de natación olímpica Stefano Battistelli. El adolescente, que tiene síndrome de Down, recibió la medalla junto con un plato de coraje y generosidad de Luca Lotti – el Ministro de deportes de Italia. El adolescente salvó la vida de un niño ahogado en la playa de Sabaudia.
Catoia comenzó a nadar cuando tenía tres años, ya que su familia quería que desarrollara fuerza muscular y resistencia. Le encantaba nadar y pasaba su vida entrenando y participaba en las Olimpiadas especiales. También se entrenó para rescatar a la gente del mar.
Las habilidades de natación de catoia le ayudaron a salvar las vidas de dos niñas que se ahogaban en el océano. El adolescente estaba disfrutando de algún tiempo con su familia en la playa de Sabaudia cuando ocurrió lo inesperado. Oyó a dos chicas pidiendo ayuda.
Las mareas oceánicas arrastraron a las niñas de 10 y 14 años de regreso al mar mientras intentaban llegar a la orilla. Catoia y su padre se zambulleron en el agua para rescatar a las chicas.
El adolescente administró una técnica de salvamento que aprendió durante un curso de primeros auxilios. La palabra de su acto heroico fue viral y fue honrado por el ex primer ministro y Ministro de deportes italiano.
Via: Worthy to See