• Steve Friedman

Caregivers of Adults with Down Syndrome Need This Info - NDSS' Virtual Adult Summit (2nd Half)

In light of Coronavirus-related lockdowns and social distancing, the National Down Syndrome Society converted its annual Adult Summit to a virtual series throughout May.


There is a tremendous amount of information available through the conference. I've tried to distill the information down to a handful of key learnings.

#ndss #ndssAdultSummit2020 #BeyondDownSyndrome #TheUPLiftingGuidebook


Here's my biggest takeaways:

  • Most adults with Down syndrome wear uncomfortable shoes leading to gait abnormalities in 50% of cases.

  • NDSS' #DSWorks program is a great resource for advocates and employers

  • 98% of adults with Down syndrome will be afflicted by Alzheimer's, 50% by age 50! And decline is must more rapid (often only 2-4 years to death)

  • 5 great tips to promote a healthy life were shared with self-advocates

  • 64,000 ABLE accounts are open. Learn more about this important instrument.

  • Congenital Heart Disease is not just a concern for their first year. Gain some critical advice and resources.


Read on for impactful lessons from the second half of the Summit:


If the Shoe Fits (Dr. Marc Colaluce, All Florida Podiatry)

  • Most adults with Down syndrome wear uncomfortable shoes resulting in 50% having gait abnormalities, skin/nail problems, and/or bone deformities.

  • Technology and markets progressing toward foot scanning to provide customized shoes. "Smart" shoes are also becoming available which can adjust to your feet through iPhone apps. Options are available online. Pricing is expensive and most don't accept Medicaid/Medicare at this time.

  • In the meantime, best "over the counter" fit tends to be New Balance (800 Series+) or else Merrells, Vans. Orthodics are of great benefit in these shoes and should mold to the foot are often durable for the life of the shoe.

  • Special Olympics can help through their "Fit Feet" program.

  • Best advice is to see a podiatrist first as they can help with best fit and address other issues like bunions, nail fungus, flat feet, and other issues.



Pathways to Inclusive Employment (David Egan, Self-Advocates with Matteo Lieb, NDSS Program Manager)

  • Our community has a right to real jobs for real wages.

  • Work is more than a paycheck but a social connection, a learning opportunity, and a huge source of pride.

  • NDSS' #DSWorks program helps prepare individuals and facilitate job search

  • Local government agencies can/should assist with interviewing skills, job search, and training, but often the best resources are your local Down syndrome association and parents taking the lead on the process.



Long and Winding Road: Down Syndrome, Alzheimer's, and Advanced Care Planning (Jane Boyle, sibling)

  • What a moving, heartbreaking story of Ellen by her sibling Jane Boyle. Jane shared the closeness of the sisters and then the sudden decline given the onset of dementia and Alzheimer's.

  • Early signs included forgetfulness, lack of motivation, belligerence, difficulty with transitions and non-routine activities, and physical discomfort with normal daily activities.

  • Unfortunately, there are no cures or treatments for dementia/Alzheimer's. Ellen's last month likely included strokes and seizures as her mind and body broke down.

  • The National Task Group has proven to be a valuable resource. They also have a checklist that you can assess periodically to detect the onset of dementia.

  • Jane recommended a Medical Order for List Sustaining Treatment (legal doc which varies by state). Also, guardianship is critical for such decisions.

  • While most populations suffering from Alzheimer's decline over a 7-12 year period, adults with Down syndrome decline much more rapidly and usually pass within 2-4 years. 98% of adults with DS are afflicted, 50% by age 50!

  • Having caregiver discussions (parents, siblings, others) starting from the time the individual is 30 are important to ensure everyone's wishes, certainly considering those of the adult with Down syndrome as well, are part of a feasible and caring plan.



Siblings: What We Need to Know (various siblings)

Several siblings of adults with Down syndrome shared their stories of kinship and support. Half of them are dealing with adults with dementia. All emphasized the importance of family and planning, by the parents and siblings together.



Living a Healthy Life! 5 Ways to Promote Your Health (Self-Advocates facilitated by Laura Chicoine and Katie Frank, Advocate Medical Group - Adult Down Syndrome Center)

Several self-advocates discussed 5 ways to promote health:

  1. Eat Healthy- fruits and veggies at every meal; whole grains, grilled over fried, portion control

  2. Drink Water- 64 ounces of water and/or sugar-free water drinks each day

  3. Sleep- getting 7-9 hours per night with a regularly scheduled bedtime

  4. Active- through sports, dance, weights, stretches.

  5. Relaxation- when stressed, pause and use relaxation tools (calm breathing, pets, stretches, coloring, music, talking) to help



Ending #Law Syndrome (with the NDSS Policy Team)


An informative session on some key initiatives:

  • ABLE Act- providing tax-free savings mechanisms that don't affect other benefits like SSI, Medicaid/Medicare. Funds can be used in a wide variety of ways. It is important to keep receipts and check terms to ensure proper usage. There are currently over 64,000 ABLE accounts in most states across the country. You do not necessarily have to use a bank in your state. NDSS.org website provides an evaluation of a variety of ABLE funds. In my opinion, all families should have an ABLE account.

  • Ending Sub-Minimum Wage- many initiatives underway to end sub-minimum wage through federal policy with funding provided to companies to ease their transition without deterring them from continuing to employ special needs staff.

  • Benefits Protection- initiatives developing to protect SSI, Medicaid/Medicare, etc benefits for special needs individuals when they get married. Today, incomes are pool which often reduce/eliminate some benefits when community members get married.

Remain informed or get involved at www.ndss.org.



The Heart of Caring, The Art of Compassion - Straight from the Heart (with Dareen Bestolarides, RN)


Lots of information about congenital heart disease (CHD) and the need to remain vigilant throughout the life cycle as new conditions may develop given the different genetic makeup of those with Down syndrome as well as potential complications over time from surgeries administered early in life to address pre-natal conditions. Conditions could include leaky valves, arrhythmias, pulmonary hypertension, bacterial endocarditis risks, and others.


Full slide pack is available at https://spaces.hightail.com/space/t8CvDiUix8 . The most important point is to ensure your adult with Down syndrome remains under the care of a cardiologist, but more specifically one specializing in CHD.


Contact Adult Congenital Heart Association (www.achaheart.org) for more info.

Speaker Doreen Bestolarides, RN also administers a Facebook Group (H.E.A.R.T. 21).



I am now participating in some of the National Down Syndrome Congress' (NDSC) Convention From Your Couch in June. I will share highlights of these sessions in June.



Your comments and questions are welcome on our Facebook page or by email.

Look for updates on The UPLifting Guidebook Project on our website.