Caring for our most vulnerable children: How is California doing?

Background: The California Children's Services Program (CCS) provides diagnostic and treatment services, medical case management, and physical and occupational therapy services to children and youth with specified special health care needs (CSHCN) who meet financial eligibility criteria. CCS covers many complex medical conditions, including cancer, cystic fibrosis, hemophilia, cerebral palsy, traumatic injuries, and infectious diseases. In 2010, surveys were completed by families with children covered by CCS and by physicians paneled by CCS to care for these children to identify strengths and weaknesses of CCS and the challenges facing those involved with CCS. Methods: Web-based surveys were developed and links to the surveys were distributed to CCS families and physicians via local county CCS programs, family advocacy organizations, the state CCS program, and professional organizations. Results: 417 family surveys and 142 physician surveys were completed. The majority of families are very satisfied (45%) or somewhat satisfied (39%) with the CCS program. 17% of families report problems accessing primary care; 28% report problems accessing specialty care, with delays getting appointments with specialists being the most common problem; and 40% of families needing mobility aids or devices for their children experience delays in getting this equipment. For physicians, time consuming paper work (78%), delays receiving payments (66%), and low reimbursement rates (60%) are the most important barriers to participation in CCS. Conclusions: While families are generally satisfied with CCS, the program remains challenged by shortages of specialty physicians and medical equipment providers, complex paper work and low reimbursement rates.