• Steve Friedman

Valuable Insights from NDSS' Virtual Adult Summit

Updated: May 21

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


Following are impactful lessons from the first half of the Summit:

Decline in Skills and Regression in Adolescents and Adults with Down Syndrome (Dr. Brian Chicoine, Medical Director at Advocate Medical Group Adult Down Syndrome Center)

  • Described "Regression syndrome" as a condition where individuals regress or lose various cognitive or social skills over time. Chicoine indicates this can occur due to physical conditions such as endocrine disorders, chronic pain (spine, gastrointestinal, cardiovascular) which could be worsening of life-long conditions or new conditions experienced due to aging or other exposure.

  • Regression syndrome can also result from post-traumatic stress disorder (from death of a loved one, moving locations, or other abrupt life changes).

  • Regression syndrome most often occurs in 15-30 year olds with special needs and can last three or more months causing loss of cognitive or social skills. This can be temporary if the source (physical or mental) is properly addressed or it can be permanent. Early identification and consultation with medical professionals, ideally experts in Down syndrome, is critical.

  • The individual my feel unsafe or unstable due to sudden changes. Many are challenged to understand the issue, let alone communicate their feelings. As a result, conditions may continue unaddressed and the individual suffers due, in part, to an inability to cope with these changes.

  • A proper level of independence and challenge for individuals with Down syndrome can help mitigate this decline. The key is that such change should be customized to the individual - too limit can lead to complacency or depression and too much can overwhelm the individual and present considerable anxiety.

  • Dr. Chicoine warns not to assume such declines are a result of early onset of Alzheimer's. Proper family and medical attention can often slow or reverse these declines.



Research Update: Down Syndrome & Alzheimer’s Disease (Dr. James Hendrix, Chief Scientific Officer, LuMind IDSC Foundation)

  • While 12% of adults over 65 in the general population contract Alzheimer's, 95% of adults with Down syndrome have contracted the disase by 68 (50% by age 55, 70% by 55-60). This heightened risk (really reality) is because the gene lies on the 21st chromosome which people with Down syndrome have an extra, 3rd, chromosome.

  • There are many efforts to find treatment for those with Alzheimer's. Some focus on the Down syndrome community. Most are aimed to prevent or mitigate the affects once signs are identified. There does not appear to be any likely cure or reversible treatment. It will be important to test any treatments within the DS community to make sure it has the same affect and doesn't cause complications given other common conditions of those with Down syndrome.

  • Dr. Hendrix noted several factors that could increase the likelihood of contracting Alzheimer's in general, perhaps especially at earlier ages including education/learning/challenge, hypertension, obesity, hearing loss, depression, diabetes, physical inactivity, smoking, low social contact, and sleep apnea. Many of the conditions are common within the DS community and thus we should all take action to help mitigate/delay the onset of Alzheimer's.



Planning for the Future (Jerry Hulick, Senior Planner, The Washington Group Special Care Planning Team Caring Consulting Group)


Session focused on financial planning at various life stages. Though some benefits don't begin until adulthood, registering for them as early as birth is critical to gain the resources you need, when you need them. The following is very brief recap:

  • At Birth- state benefit waivers (to support school, therapy, and residential needs of adults), Social Security, Legal orders (including Special Needs Trust)

  • Age 3- Medicaid for health care, IEP (for preparing school lesson plans and transitions)

  • Age 15- Transition Planning (from public secondary schooling)

  • Age 18- SSI benefits, Medicare/Medicaid, Social Security Survivor Benefits, Guardianship, College, SNAP/TANF/CHIP, ABLE accounts

  • Age 22- SSDA, Residential options, Employment options, Social integration/engagement

  • Parents 65- SSDA, Children's Disability Benefits, Medicare

  • Parents death- Estate distribution

Most parents are unaware of many of these benefits. Many find out late, missing out on years of service and thousands of dollars of resources. It is critical to understand and manage each option. Many items vary by state or county. Consult a special needs lawyer early on to be best prepared.



Life with Down Syndrome: A Sibling’s Journey (with Embry Burrus, Sibling)


A very moving session in which Embry recalls time with her sister, Margaret, who has Down syndrome. Embry, the junior sister by about 2 years, shared the closeness they experienced throughout childhood. Margaret was a very active, cheerful, and caring young lady. When their mother died, Embry became the caregiver. Margaret had many setbacks after their mother's death and moving to a new location without the usual surroundings. Dementia soon set in for Margaret, leading to diminished capabilities including depression, OCD, defiance, and hitting. This has certainly changed the role for Embry as well.


As a father of a 25-year-old daughter with Down syndrome, Embry's moving story was a reminder of the frailty of life and the risks of dementia, especially within the Down syndrome community. We should support our family members with Down syndrome to reach for their dreams but at the same time making plans for a variety of paths throughout their life. Margaret appears to have taken advantage of every opportunity in life with the loving support of Embry and their mother.



Becoming a Sexual Self-Advocate (with Katherine McLaughlin, M.Ed., Elevatus Training and Jennifer Katz, NDSS Job Coach and Office Assistant, Partners in Policymaking Graduate)


Interesting session in which Katherine and Jennifer discuss an often taboo subject in general and special needs society...sexual advocacy. This subject doesn't just apply to physical intimacy, but to relationships in general. Keys shared:

  • Self-advocates are adults and should have information from parents or appropriate teacher about relationships and intimacy, including kindness and abuse

  • Self-advocates have the same needs and desires of everyone else

  • Open communication of interests and limits should be shared by both parties always

  • Parent and caregiver should be kind and caring, but over-protection may deprive self-advocates of the spice of life. Resistance to discuss or support doesn't stop the interest, just the communication.



Build Your Life…Live Your Dream (with Self-Advocates Mary Borman, Megan McCormick, Eden Rapp, Candace Whiting, and Colleen Hatcher, NDSS Community Outreach and Engagement Manager)


Exciting and uplifting sharing by four self-advocates who shared their amazing personal stories. They are government lobbyists, models, authors, college graduates, business owners, motivational speakers, special Olympic athletes, girlfriends, pizza makers, and dreamers.


Their message is uplifting for parents of newborns and inspiring for older self-advocates and parents that they can do anything they wish with the support and love of family, and their own determination, intelligence, and personality. A great session to close the week!


Your comments and questions are welcome on our Facebook page or by email. Look for highlights of the second half of the Summit at the end of the month.