In Their Own Words: Improving the Care Experience of Families with Children with Special Health Care Needs

With the early implementation of the Affordable Care Act and mounting energy in California and other states to address systemic issues facing CSHCN, opportunities to develop and test new models have emerged. To inform these new efforts, 10 focus groups of parents of children with special needs were conducted. Fifty-two parent participants talked about their lives with children with special needs and their experiences obtaining needed services. Participants offered their recommendations for improving the current system of care.

Each group was asked the following three questions:

• What are your children’s special needs and how do these affect their health, well-being, functioning and development? How do they affect the rest of the family?
• How well are your children’s needs being met? What about the system of care is working well for children and families? What is not working well?
• What specific recommendations do you have about how the system of care can better meet your children’s needs?