Affiliations: Departments of Medicine and Pediatrics, Indiana
University School of Medicine, Indianapolis, IN, USA | Indiana University Center for Youth and Adults with
Conditions of Childhood, Indianapolis, IN, USA | Cincinnati Children's Hospital Medical Center,
Cincinnati, OH, USA | Departments of Public Health and Pediatrics, Indiana
University School of Medicine, Indianapolis, IN, USA
Note: [] Corresponding author: Mary R. Ciccarelli, %Indiana University
School of Medicine, Departments of Medicine and Pediatrics, Center for Youth
and Adults with Conditions of Childhood. Riley Hospital for Children, Room
5850, 705 Riley Hospital Drive, Indianapolis, IN 46202, USA. Tel.: +1 317 948
1999; Fax: +1 317 948 7577; E-mail: mciccare@iu.edu
Abstract: PURPOSE: Significant gaps in care and limited existing models
establish the need to innovate systems of care for youth with special health
care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support
program was created. University and community partners explored needs and
adopted a strategic plan and funding sources. The existing consensus statement
provided a framework. A team was hired, policies were piloted and the initial
ambulatory consultative transition service for youth with special needs ages 11
to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with
intellectual disability and/or physical disability (average 16.74 years, 46%
female). Services include routine and focused co-morbidity screening and
recommendations, care coordination of complex health and community service
needs, and support for families. The evolving transdisciplinary team adapted
their methods to collaborate with a growing population of youth and primary
care providers. CONCLUSION: A statewide transition support program is a
viable delivery model to provide needed resources for youth, families and
primary care practices. Weekly improvement meetings continue to adapt services
to sustain family satisfaction and community provider satisfaction.
Keywords: Adolescent health services, implementation science, intellectual disability, physical disability, transition to adult care, consultation and referral, program development, youth with special health care needs
