YADSA Administrator

Save The Date – Down Syndrome Advocacy Conference

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Thank you to all affiliates who helped make this year’s advocacy conference a tremendous success!

With over 400 attendees resulting in over 200 legislative meetings, our community made meaningful legislative change on the national level. We are so grateful for the support and leadership of affiliates across the country empowering our community to advocate and share their voices with their federal legislators.

The momentum we’ve built together doesn’t stop here. Keep advocating in your local communities, continue those important conversations with your representatives, and stay connected with us throughout the year.

Mark your calendars for May 11-12, 2026, for our 2026 NDSS Down Syndrome Advocacy Conference and stay tuned for more details! Until then, thank you for being powerful advocates for our community’s needs.

Medicaid Advocacy Update

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Budget reconciliation, a special legislative process, is underway in Congress. As a result of the passionate advocacy from the disability community, a number of proposals that would have drastically changed the way Medicaid is financed did not make it into the current bill. Our collective advocacy has made a significant difference, but it is not over yet!

The House of Representatives has passed a bill that would make several changes to Medicaid, including:

·      Limiting ways for states to pay for their share of Medicaid

·      Reducing Medicaid’s retroactive coverage

·      Instituting work requirements for some Medicaid recipients

While the bill seeks to exempt individuals with disabilities from some of these changes, we remain concerned that these proposals would have unintended consequences for those with Down syndrome and other disabilities.  

The bill will now go to the Senate for a vote. Now is a critical time to make your voice heard! Please share our action alert with your families.

NDSS has been engaging directly with Congressional offices, developing resources, and distributing letters to highlight the unintended negative impacts these proposals could have on individuals with Down syndrome and other disabilities. We are currently collecting stories from individuals with Down syndrome and their families about how Medicaid services impact their daily lives. These firsthand accounts help legislators at the state and federal levels understand the real-world importance of the programs they’re making decisions about. If you know of someone with a story or if your organization is impacted by Medicaid funding, please share our survey here!

2025 York Area Down Syndrome Buddy Walk!

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✨ SAVE THE DATE! ✨
The York Area Down Syndrome Association is excited to share the date of our 2025 BUDDY WALK!
️ Date: Saturday, October 4, 2025
⏲ Time: 11:00 AM – 3:00 PM
Place: John Rudy Park
This year will be our 20th year for the Buddy Walk and boy do we plan to celebrate BIG. We are coming back bigger than before; with more activities, more prizes and more fun. So, get your team together, pick your team name and get ready to come together as a community and have a blast. Look forward to team giveaways leading up to the walk, as well as prizes for the largest team and largest team donation. Will your team earn the opportunity to hold our Buddy Walk banner and lead the walk?
Registration will open in July, but until then follow along for exciting updates, more information and help us build the excitement for The. Best. Day. Ever!

A mom’s wonderful message to anyone just finding out their child has Down syndrome

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The following story is one of many in support of passing the Down Syndrome Protection Act (House Bill 2050 & Senate Bill 1050) because Down syndrome is a life worth living.
To any woman that is faced with a prenatal diagnosis of Down syndrome, may I share with you my experience of having my child with Down syndrome be the absolute best thing that’s ever happened to me.

He is an awesome human being and beyond. No matter what kind of stresses went on in my day, I know that when I see Devin, from the moment he says, “Hello, how are you?” “Hug?” everything is as it should be.
Let me tell you, you don’t know the meaning of unconditional love until these incredible beings are born. What I want parents, grandparents, other children, the community and people all across the world to know is that Down Syndrome is a developmental disability, not a disease, nothing to be afraid of or isolated from. DS is a part of their being but does not define them, their abilities, nor their hopes and dreams.
My child loves to dance, attend school, cook, swim, ride horses, play sports, listen to pop music, especially Michael Jackson, and blushes when he hears the name of girls he likes..Rachel..Beyonce. He tries to look at things he shouldn’t over the internet, pretends to be sick to avoid going somewhere, laying down the law with his other siblings…the full gamut…you name it. He has more in common with a typical teenager than any differences.
I don’t know how far my child will go in this world but he is HERE, and he will determine that and momma bear along with educators and advocates will help to sculpt and foster his future. He will try many new things, and succeed at most. He will work hard in school and at his job. I know that the possibilities are endless. He will be who he is intended to be and more than you imagined.
It may be hard for parents when first confronted with the diagnosis because you think about how cruel the world can be and you feel a loss in what you dreamed them to be. You are temporarily blinded by fear. You can’t forecast what your child with DS can do or who they can be, but you wait, they will eagerly show you and with a smile on their face. They have personalities, determination, and they’re fearless so don’t limit them.
What’s the recipe for that vision board to come to fruition? Early intervention, education, opportunity, and some love. These are some of the things that will help our children to give breathe to their dreams.
Why me? Why was I chosen? I don’t know, but I thank God that I was. How did I get so lucky!
– Tamara, Pennsylvania

Pennsylvania’s Down Syndrome Protection Act would prohibit an abortion of any child solely due to a diagnosis of possible Down syndrome. Estimates show at least 67 percent of families in the United States when given a prenatal diagnosis of Down syndrome choose to abort the baby. And families right here in Pennsylvania have been pressured by medical professionals to have an abortion when given this diagnosis.
Encourage your State Representative and State Senator to support the Down Syndrome Protection Act. To automatically email your elected officials, use our Citizen Action Center: tinyurl.com/ValueAll

A mom’s wonderful message to anyone just finding out their child has Down syndrome