Health Care Transition and Disease Self-Management SIG


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Vision

Our vision is create, through collaboration, research and policy making, a system of health care that supports optimal health of youth and young adults with special health care needs and developmental disabilities during transition to adulthood.

Mission

Our mission is to create a forum to promote discussion, collaboration, research and innovation among scientists, clinicians, advocates, policy makers, as well as youth and families who are interested in improving the health and healthcare of youth and young adults as they transition from adolescence to adulthood, from child health systems to adult health systems.

Goals

The goals of the Health Care Transition and Disease Self-Management SIG are to:

  • Host an annual meeting that promotes discussion and collaboration related to research, clinical care and policy
  • Collaborate with specialty societies and advocacy organizations to encourage discussion and review and promote best practices
  • Maintain a list serve to foster communication among members of the SIG and others interested in Health Care Transition



Annual Report


Co-chairs: 
Lynn Davidson M.D.
Assistant Professor of Pediatrics
Family Care Center/Division of General Pediatrics
Montefiore Medical Center

 Jason Woodward M.D., M.S.
Assistant Professor of Clinical Medicine and Pediatrics
Adolescent and Transition Medicine
Cincinnati Children’s Hospital Medical Center

SIG purpose/mission:
Our mission is to create a forum to promote discussion, collaboration, research and innovation among scientists, clinicians, advocates, policy makers, as well as youth and families who are interested in improving the health and healthcare of youth and young adults as they transition from adolescence to adulthood, from child health systems to adult health systems.

Goals

Current SIG goals:

The goals of the Health Care Transition and Disease Self-Management SIG are to:

  • Host an annual meeting that promotes discussion and collaboration related to research, clinical care and policy
  • Collaborate with specialty societies and advocacy organizations to encourage discussion and review and promote best practices
  • Maintain a list serve to foster communication among members of the SIG and others interested in Health Care Transition


Annual summary:

The 2016 Pediatric Academic Society Health Care Transition and Disease Self-Management (HCT-DSM) SIG in Baltimore featured a theme of "Health Care Transition for youth and adults with intellectual and developmental disabilities (IDD)." The new format included five different presentations on the SIG’s theme and our diverse, expert speakers were well received by attendees. Over 40 individuals attended the HCT SIG meeting and as usual, took advantage of the opportunity to network and discuss possible collaborations with other HCT SIG members. Initial feedback on the theme and presentation format, as well as this year’s speakers, was very positive overall. We also presented framed Wordles to the founding co-chairs Cecily Betz, Megie Okumura, David Wood, and Maria Ferris to express our appreciation for their amazing leadership and dedication to our SIG. 

Matthew Holder, MD, is an internist who is a strong advocate for better healthcare for adults with IDD and President of the American Academy of Developmental Medicine and Dentistry. He described how he was able to start an interdisciplinary clinic for adults with IDD in Louisville, KY. We learned about the type of coordinated services provided in the clinic, and some of the challenges faced in getting his patients appropriate health care. He also provided attendees with the unique perspective of an adult provider who is accepting patients with complex chronic conditions of childhood transitioning into an adult specialty and primary care practice. Dr. Holder discussed how advocacy by providers and guardians allowed for governmental funding of this unique practice.

Our next 2 speakers addressed the HCT training for patients with IDD, families, and providers. Ilka Riddle, Director of the University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD) in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center, utilized external funding support and involved community partners and families in the planning process to plan a yearly, regional "Transition Bootcamp".  The day-long training seminar targeted parents and caregivers of youth with IDD and community service professionals, covered a variety of topics addressing transition to adult life, and included a vendor fair.  Follow up monthly, evening "Booster sessions" focused on specific individual topics for families who wanted more information. The Bootcamp and Booster sessions were well attended and families expressed high satisfaction and learning new information.  Janet Hess is the statewide Project Director for Florida Health and Transition Services (FloridaHATS), an HCT improvement initiative sponsored by Florida's Title V program.  She described the development, activities and tools, and evaluation for "My Health Care," a health literacy and communications training program for individuals with IDD sponsored by the Florida Developmental Disabilities Council.  This program had high participant satisfaction, and showed improvement in pre-post knowledge and self-efficacy scores.  The curriculum is available online, including Learner and instructor materials: www.fddc.org.

Mary Ciccarelli, a Medicine-Pediatrics physician and clinician educator who directs a transition support program (The Center for Youth and Adults with Conditions of Childhood at Indiana University School of Medicine), described the common transition issues for youth with IDD addressed in her consultative clinic model by her multidisciplinary team. Her entertaining talk also described some ways to address the challenges and common health conditions encountered when providing medical care for young adults with IDD.  Peggy McManus from The National Alliance to Advance Adolescent Health and Got Transition took us through ongoing advocacy efforts by Got Transition, the AAP, and others to address payment gaps for delivery of transition services. She utilized case examples to illustrate how to possibly apply certain CPT billing codes for common transition planning activities and coordination services (such as updating care plans, reviewing records, coordinating with other providers, etc.). She recommended we bill for these services even if we aren’t getting reimbursed and provided us with resources from the AAP.  Please visit www.gottransition.org for the new Tip Sheet on Coding and Payment.

All of our authors have been generous to allow us to share a PDF of the presentations with our members. The presentations and some associated resources will be posted on the APA site.

Other groups that work in your area of interest:

APA Complex Care SIG
APA Developmental Behavioral SIG
Health Care Transition Research Consortium
Got Transition
MPPDA - Med Peds Program Director Association
Society of Adolescent Health and Medicine
Society for General Internal Medicine - Adults with Complex Conditions Originating in Childhood
American College of Physicians - ACP Council of Subspecialty Societies
Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, Baylor College of Medicine


Previous Newsletters




Current SIG Co-Chairs:


Lynn Davidson, MD
3444 Kossuth Ave
Bronx, NY 10467
Phone: (646) 327-9460
ldavidso@montefiore.org

Parag Shah, MD, MPH
345 West Fullerton Parkway
Chicago, IL 60614
Phone: (773) -41-4655
parshah11@yahoo.com

Jason Woodward, MD
3333 Burnet Ave
Cincinnati, OH 45229-3026
Phone: (513) 803-4793
jason.woodward@cchmc.org


 

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