Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities

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.