Have you ever wished you lived closer to a specialized Down syndrome medical clinic? Have you had to rely on healthcare providers who—even if they are well-meaning—lack the expertise or experience to provide knowledgable care for your loved one? Well, we’ve got good news for you, and it’s called CARE Down Syndrome. This new initiative from the National Down Syndrome Society is a free online education and resource hub designed to equip any healthcare professional with the knowledge, tools, and confidence needed to deliver exceptional care to adults with Down syndrome.

And this is so needed! Most of us rely on primary care professionals who often have limited experience with Down syndrome and may have received minimal training in medical school on how to provide appropriate care. CARE Down Syndrome enlisted more than 40 experts, including Brian Chicoine, MD, of Advocate Medical Group Adult Down Syndrome Center, to extend their expertise to primary care professionals worldwide. Most importantly, CARE Down Syndrome supports better health outcomes for adults with Down syndrome regardless of their proximity to a specialized healthcare provider.

So, if you have a doctor who wants to learn more, please share this exciting new resource with them. Most doctors and nurses have to take continuing education courses anyway. This hub is not only free, but it makes getting those continuing education credits easy. It’s flexible and self-paced. They can start and stop courses at leisure, they can get credit for reading articles, and they have access to an in-depth resource library of relevant subjects all in one place. And did we mention, it’s free?

So spread the word! Because every adult with Down syndrome deserves quality healthcare, regardless of where they live.

Links:

CARE Down Syndrome https://careds.org/

Project Echo https://www.dsmig-usa.org/project-echo

Down Syndrome Medical Interest Group (DSMIG) https://www.dsmig-usa.org/

About Kandi Pickard, CEO of National Down syndrome Society https://ndss.org/meet-our-staff

About Dr. Brian Chicoine, Medical Director of the Adult Down Syndrome Center (Advocate Medical Group) https://adultdownsyndrome.org/team-member/brian-chicoine-md/

We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

Jadene, Kristin, and Molly look back and share what they recall were the earliest signs of dementia in their loved ones. They discuss which symptoms were the same and which were different between the three of them, the importance of documentation, and personal insights into when they each knew the diagnosis was real.

Mentioned in this episode:

Early Detection Screen for Dementia (screening tool) https://www.the-ntg.org/ntg-edsd/documents

Down Syndrome & Alzheimer’s online support group http://Facebook.com/groups/dsalz

We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

John Nadworny—a retired Certified Financial Planner with over 30 years of experience working with families of individuals with special needs—reveals how true succession planning goes beyond financial security and legal documents. Succession planning takes into consideration the various things that are required for your loved one’s life to continue with fulfillment and joy after you’re gone. John shares practical strategies including a letter of intent, building a trusted team, and fostering ongoing conversations that future-proof your loved one’s care. He also emphasizes that planning isn’t a one-and-done task, it’s a continuous lifelong process that honors your loved one’s happiness as well as security. Discover how to start today, adapt as life unfolds, and ensure your loved one continues to thrive—no matter what tomorrow brings.

In this episode we talk about the emotional, practical, and relational layers of planning:

- Thinking through roles and responsibilities of who will take over when a parent is no longer here, or unable to continue being the caregiver.

- The importance of emotional acceptance when planning, and the difficult feelings that often come along with it.

- Selecting the right guardians or trustees—even if you’re starting late, or are unsure who in your circle to choose.

- Starting the difficult conversations and creating an ongoing process.

- Establishing a vision for your loved one's future so they can continue doing the things they love.

John Nadworny is the co-author of The Special Needs Planning Guide (Brookes Publishing, 2007 and 2022), and was a Certified Financial planner and Wealth Advisor for decades. He’s a father of three—James, Alex, and Ben. James is 35, has Down syndrome, and lives with John and his wife Susan. His other two children, Alex and Ben, worked with him as financial advisors, until 2023 when John retired. Their family company was acquired by Sequoia Financial Group because of Sequoia's commitment to working with families of individuals with special needs. Alex and Ben continued on with Sequoia so they could focus on planning with families rather than managing a company.

Links:

Future Planning: A Roadmap: https://drive.google.com/file/d/1r4ol8DYIXZMJbedITh5boRl2-Dufihjm/view?usp=sharing

Sequoia’s special needs planning resources

https://specialneedsplanning.com/resources/

We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com