Valuable Resources for Families with Down Syndrome

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.

GENERAL

1- The Essential Guide for Families with Down Syndrome

2- CQP Podcast

3- T21 Moms Podcast

4- CPG Webinar

5- Mallett & Michelle Podcast

6- Speaking Engagements

7- ARTICLE: 10 Pillars of Independence Made Simple

8- ARTICLE: Start Your Independence Plan Early...and How

9- ARTICLE: Independence Can Be Scary!

10- YouTube: March to Independence - Introduction

HEALTH

1- Down syndrome clinic directory

2- Dual Diagnosis: DS and ASD

3- A New Course (Dual Diagnosis) - Teresa Unnerstall

4- Medical Care Guidelines for Adults

5- Mental Health Counseling- No Limits

6- Mental Health Counseling - Rose Reif

7- Dementia Screening

8- Down Syndrome Research - LuMindIDSC

9- ARTICLE: 5 Common Health Risks to Prepare for Now

10- ARTICLE: Down Syndrome & Dementia: How We All Can Help

11- YouTube: March to Independence - Health & Wellbeing

RELATIONSHIPS

1- Best Buddies

2- Social Relationships - Madhatter Wellness

3- Success in Special Needs Divorce

4- ARTICLE: Sibling Relationships & Responsibility

5- ARTICLE: What's Going On In Their Head?

6- YouTube: March to Independence - Safety & Social

WORK & SCHOOL

1- Workforce Commissions Job Assistance Directory

2- Communication Support in the Workplace - For All Abilities

3- Inclusive College Program Directory

4- ARTICLE: Overcoming Down Syndrome Plateaus

5- YouTube: March to Independence - Work

6- YouTube: March to Independence - Continuing Education

FINANCIAL & LEGAL

1- Financial Advisor - Solutions for Special Needs Families

2- Social Security

3- ABLE Accounts

4- SNAP Program

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

6- ARTICLE: This Just Can't Way...Resources Due You!

7- ARTICLE: 3 Legal Documents You Should Have in Place Now

8- ARTICLE: Guardianship & Alternatives

9- YouTube: March to Independence - Financial & Benefits

10- YouTube: March to Independence - Legal Protection

INDEPENDENT LIVING/HOUSING

1- Independent Living Community - Marbridge

2- Housing Directory

3- Housing & Community Options - Together for Choice

4- ARTICLE: Red Flag Warnings During Your Housing Search

5- YouTube: March to Independence - Housing

AND MORE...

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!

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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.

GET YOUR COPY HERE!

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!

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