CHOP Clinicians Present at National Down Syndrome Congress

Clinicians from the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP) joined thousands of families, advocates and educators from around the world at the National Down Syndrome Congress on July 20-23, 2017, in Sacramento, CA.

The annual convention offers an opportunity to learn about current Down syndrome research, share new tools to help individuals with Down syndrome, collaborate with other families and clinicians, and reconnect with old friends.

At this year’s convention:

• Parents learned from internationally known experts about what to expect during the lifespan of individuals with Down syndrome.
• Individuals with Down syndrome joined more than 300 friends from across the world to learn, share and become empowered to advocate for themselves.
• Siblings heard from professionals and each other about ways they could support their loved ones with Down syndrome.

CHOP clinicians presented two sessions at the NDSC conference — one offering a new perspective about the early development of children with Down syndrome, and the second about a new tool available to help older teens and young adults transition to adult healthcare.

The first three years

Heather Ruthrauff, MS, OTR/L, and Helen Milligan, PT, MPT, therapists from CHOP’s Trisomy 21 Program, presented, “Let’s Get Moving: An OT/PT Perspective on the First Three Years of Life.”

The presentation focused on three key topics related to the early development of children with Down syndrome:

• The therapeutic principles behind treatment of the young child with Down syndrome and how to promote proper progression of skills
• The interplay between gross and fine motor skills, visual motor skills and sensory processing skills and how they all impact the development of a child with Down syndrome
• The proper equipment and other therapeutic interventions to be used with children with Down syndrome

Transition to adult medical care

Alyssa Siegel, MD, an attending physician with the Trisomy 21 Program, also conducted a session entitled, “Not a kid anymore: Preparing for the transition from pediatric to adult medical care.”

Transitioning from pediatric to adult healthcare presents specific challenges for teens with special needs and their parents. Bonds forged with long-standing pediatric providers will need to be established with unfamiliar, adult providers. Complete and accurate medical records will need to be transferred. Financial preparations will need to be made, and transportation resources secured. Plans for further education or employment must be made, and matters of sexuality discussed.

Dr. Siegel told convention attendees about the new Trisomy 21 Toolkit for Transitioning to Adult Medical Care developed at Children’s Hospital. The toolkit helps engage teens in the transition process and helps them become better advocates for themselves. It includes downloadable worksheets to help teens prepare for doctor’s visits, identify their goals and medical issues, as well as consider financial and legal issues.

A similar workshop was presented in May at the Canadian Down Syndrome Society Conference, held in Alberta, Canada.

Plans for next year

Make plans to join the 46th Annual NDSC Convention: July 12-15, 2018, at the Sheraton Dallas Hotel in Dallas, TX. Learn more.