NDSC E-News ~ August 2020

Mission Moment

Over the last few months, our staff has been working harder than ever to support your family with the critical informationDavid Tolleson, NDSC Executive Director and advocacy you need. Last week, in conjunction with our national partners, we released the third iteration of our Q&A on COVID-19 and Down syndrome in both English and Spanish. We have increased our virtual learning opportunities to prepare parents for uncertain times – most recently, a webinar to help parents navigate back-to-school options without unintentionally voiding their child’s IDEA rights. We are developing more free webinars, as well as a low-cost Fall Learning Series and virtual Educators Conference. Our Policy Team is working hard on COVID-related issues ranging from financial remedies for self-advocates to educational protections for children with IEPs.

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NDSC E-News ~ June 2020

Mission Moment 
with Executive Director David Tolleson

Disability rights are civil rights. As an organization that promotes equal opportunity, access and treatment for all people, the NDSC stands with the Black community in rejecting the systemic racism in our society. We also recognize that, as an organization, we have fallen short in our outreach to underserved communities and pledge to do better.

As Martin Luther King, Jr. said, “Injustice anywhere is a threat to justice everywhere.” We all have a role to play, both in rejecting injustice and in finding solutions. To that end, NDSC will host a Town Hall on Race Relations: How do we all do better?, Monday, June 15th, at 7:00 PM ET. I hope you will join us as we listen, learn and explore actions that will make a difference in our organization and beyond.As our community knows, inclusion means breaking down barriers and welcoming everyone. We’re better all together and all together better.

David Tolleson, NDSC Executive Director

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NDSC E-News ~ May 2020 ~ Convention From Your Couch

Mission Moment
With NDSC Executive Director, David Tolleson

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.

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 48ª Convención Anual del NDSC|27 de junio al 30 de junio de 2020|Nueva Orleans, LA!

 48ª Convención Anual del NDSC|25 de junio al 28 de junio de 2020Nueva Orleans, LA!

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.


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Programas De Convenciones

La Convención General cubre a través de tres días de talleres y ponencias, todas las etapas de la vida de la persona con síndrome de Down. La Convención del NDSC brinda conocimientos e información que servirán como herramientas a padres, familiares y profesionalesLa Convención General cubre a través de tres días de talleres y ponencias, todas las etapas de la vida de la persona con síndrome de Down. La Convención del NDSC brinda conocimientos e información que servirán como herramientas a padres, familiares y profesionales.

La Conferencia de Jóvenes y Adultos es el corazón y el alma del fin de semana. Está diseñado para ser una experiencia divertida, enriquecedora y empoderante para los autogestores (individuos con SD) de 15 años o más. Es necesario registrarse por separado para asistir a la conferencia de Y & A.
Kids’ Camp provee los medios para que los padres dejen a sus hijos en horarios designados durante el fin de semana en un ambiente seguro, estructurado y divertido. Kids’ Camp está disponible para niños con síndrome de Down desde los seis meses hasta los 14 años de edad y sus hermanos de edades de seis meses hasta los estudiantes de tercer grado (los estudiantes de 4to grado pueden inscribirse en la Conferencia de Hermanos). Cinco sesiones separadas. El registro es necesario para cada sesión.

Otros eventos 

  • Cafe Latino – El Jueves por la tarde, de 7 a 9 pm, los asistentes pueden disfrutar de refrigerios mientras trabajan en red con las familias en áreas designadas de interés común.
  • Viernes – Luego de la Sesión Plenaria el viernes, sigue la Recepción de apertura y el 321 Dance™. Es una tarde llena de energía y diversión. Durante la recepción se podrán adquirir bebidas y postres (Compras en efectivo).
  • Sábado – Este es un evento de entradas, que incluye cena y entretenimiento ambiental durante toda la noche. Se requiere un boleto para asistencia y debe comprarse durante el registro. Los boletos no serán vendidos en el sitio. Inmediatamente después de la Cena, habrá una gran oportunidad para todos los asistentes a bailar toda la noche. No se requiere boleto para este evento. Las puertas se abren al final de la cena, aproximadamente a las 8:30 p.m.


Para preguntas, contacte a Mateo en Matthew@NDSCcenter.org

Policy & Advocacy Newsline September 23, 2019

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.

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Policy & Advocacy Newsline ~ July 22, 2019

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.

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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.
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.

How to Help

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!

We encourage you to stay engaged in our advocacy efforts by:

(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

NDSC E-News ~ February 2019

NDSC’s Mission Moment

with Executive Director David Tolleson 

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.

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2 niñas que podría haberse ahogado gritan mientras son arrastradas fuera del mar – Entonces el adolescente con síndrome de Down se zambulle en la agua.

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