Independence Resources for Adults with Down Syndrome

It's never too early, nor too late, to plan for independence

Through the Beyond Down Syndrome blogs over the last 3 years, we've covered a wide variety of topics from what independence means to you to financial resources due you to residential living options for adults with Down syndrome. I encourage you to check out the articles here.

Gwendolyn helping plan her own independence!

Three principles have emerged:

1. It's never too early, nor too late, to plan: independence for our adults with Down syndrome takes a lot of preparation for your child and the family as well. It requires support, an open mindset, and plenty of resources. Even from day 1, there are steps families should take. But if you are like many families with adults with Down syndrome in their 40s and 50s, it is not too late to prepare. As a matter of fact, it's urgent to start the process now.

2. Equal opportunity support: as with our other children, we need to have faith that our kids/adults with Down syndrome can grow, succeed, make mistakes, and flourish if we only give them a chance. We need to include them in future planning. We must ensure their environment is safe and secure. We also need to recognize that if we don't enable their independence, they will never find their true ceiling.

3. Independence for all: this plan for independence is not just for our blossoming adults with Down syndrome. It is for the whole family - parents and siblings alike. After a bit of an adjustment period, most parents celebrate a job well done when their last kids leave the nest. This should include our kids with Down syndrome. When you reach this point, you have fostered independence and confidence, and you are enabling unprecedented growth and happiness in your child. It's time to celebrate and enjoy your own independence.

I'm thrilled to share plans for 2024! In addition to a new-look website focused on providing essential resources for families with Down syndrome, I will also be offering several Live Independence Webinars online. Be sure to visit our new website in the new year for all the details.

These are important principles, but they are not easy tenets to follow. It takes time, focus, effort, leaps of faith, and planning. During the past year, many of you have participated in our parent's survey to learn a bit more about your child with Down syndrome, your hopes and their dreams, your biggest concerns and their greatest joys.

Below are 8 findings and how they relate to the path ahead:

Most of these common hobbies may sound familiar. How can they now prepare to safely socialize outside the school framework?

Many respondents noted common medical issues like heart defects, hypothyroidism, obesity, and sleep apnea. Did you know 98% of adults with Down syndrome will be afflicted with Alzheimer's, 50% by age 50! What can we do to prepare, delay, or prevent?

Many teens and adults are learning valuable independent skills. How can we further prepare them for adult life - home skills, working, transportation, and security?

Almost 95% of our adults with Down syndrome live at home or with relatives...

...yet many families hope their adult with Down syndrome can live in a more independent community.

Many envision their child moving out in their 20s or 30s but what is most shocking is that nearly half haven't really thought about it! What is holding us back?

The single largest obstacle is the lack of guidance. There are hundreds of books to address the needs of babies, toddlers, and school-aged kids with Down syndrome, but parents struggle to find guidance for adulthood.

Besides guidance on the steps toward independence, the next largest obstacle is financial resources. However, there are a wide variety of public and private residential living options to consider. And we also must ensure we are receiving all the resources available to us as early as possible...

There is also a lack of a comprehensive list of resources available to people with Down syndrome and their families. Only 52% are either on waiting lists or actively receiving Medicaid Waiver program benefits. What is available? When should we apply? How can we apply?

The 21st century has unleashed huge opportunities for our kids with Down syndrome, from work to college to independent living. The opportunities are evolving rapidly, but the resources to understand and pursue options are not. Many parents just don't know the questions to ask or the first places to look. Families need answers and concise, reliable information.

Kissing Gwendolyn goodbye as she settles in to her new independent life!

As many readers know, this is a personal passion for me. Our daughter, Gwendolyn, finally achieved her dream of independence this fall at a fabulous residential living community. Now we want to pull together what we've learned along the way, broaden it to assist families across the nation, and provide that comprehensive guidebook.

Our research and writing culminated in The Essential Guide for Families with Down Syndrome, published in early 2023.

Meanwhile, we continue to share insights, answer your questions, and welcome your ideas through our website, email address, social media, and our in-person and virtual workshops.

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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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