DSAA Consortium Kicks-off with What Really Matters

On Friday, March 9, the Down Syndrome Consortium, made up of the Down Syndrome Association of Atlanta, the National Down  Syndrome Congress, GiGi's Playhouse, the Emory Down Syndrome Clinic and the Adult Disability Medical home, kicked off its first event, What Really Matters? 

Dr. Amy Talboy of the Emory Down Syndrome Clinic and Dr. Andrea Videlfsky of the Adult Disability Medical Home, discussed the top concerns parents have throughout their child's lifecycle.

Here are a few key takeaways:

Emory Down Syndrome Clinic

  • There are 4-5 babies born with Down syndrome each month in the 8 metro counties surrounding Atlanta
  • Your initial visit to the Emory clinic should be between 2-8 months, but only after any critical media issues have been addressed first.
  • After the initial visit, you should return to the clinic annually.
  • A visit to the clinic should include:
    • History (initial visit)
    • Genetics (initial visit)
    • Physical Exam
    • Developmental assessment
    • Referrals & Resources
    • Q&A

Adult Disability Medical Home

  • While there are published guidelines that doctors have access to for children with Down syndrome, there are no such guidelines as they transition to adulthood.
  • At age 18 your child ages out of the Deeming waiver
  • At age 21 they age out of the pediatrician
  • At age 22 they age off the parent's insurance
  • The Adult Disability medical Home is a medical clinic that provides an interdisciplinary team of doctors that work collaboratively on behalf of your adult child's care
  • Your visit to the ADHM clinic includes seeing:
    • Social worker
    • Physicians
    • Dieticians
    • Family counselor
    • Patient advocate
  • During the visit, the team will address education and vocation, transition, medical systems, behavior, medication and aging


Our next consortium event is on 3/21 at the Capitol as we learn more about the legislative issues that affect our families.