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Valuable Resources for Families with Down Syndrome

Updated: Dec 5, 2023

50 linked resources to support your self-advocate's independence journey

During Gwendolyn's independence journey, we've gathered some amazing resources - experts, websites, books, podcasts, and more. Now we highlight some of the best for you...

Each section includes select resources along with our most popular subject articles and episodes from our YouTube series.


10- YouTube: March to Independence - Introduction


11- YouTube: March to Independence - Health & Wellbeing


6- YouTube: March to Independence - Safety & Social


5- YouTube: March to Independence - Work

6- YouTube: March to Independence - Continuing Education


5- HIPP Program (medical premium reimbursement)- Google HIPP for your state

9- YouTube: March to Independence - Financial & Benefits

10- YouTube: March to Independence - Legal Protection


5- YouTube: March to Independence - Housing


Many more resources can be found in The Essential Guide for Families with Down Syndrome, as well as our Resource page on our website.

Independence doesn't have to be overwhelming. These resources can help your family get all the resources and opportunities your self-advocate deserves!


I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!

The Essential Guide provides step-by-step support to:

  • Inspire mindset shifts toward one of independence and possibilities

  • Foster independence building blocks from the earliest age

  • Highlight health risks and financial resources every family must know

  • Detail education and work options to promote community inclusion

  • Evaluate family- and community-based home options including the search process

The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.

“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas

Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.


Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!


Get the latest on The Essential Guide, speaking engagements, and our weekly blog articles and resources when you subscribe to our free website.

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