“He only takes those type of patients on certain days”: Specialty care access for children with special health care needs

Rebecca Feinstein Winitzer, M.S., M.S.W., Joanna Bisgaier, M.S.W., Ph.D., Colleen Grogan, Ph.D., Karin Rhodes, M.D., M.S.

Disability and Health Journal




Expansions to public and private coverage opportunities under the Affordable Care Act and the Children’s Health Insurance Program are meant to provide greater access to medical services, particularly for the 10 million US children with special health care needs (CSHCN).


We used qualitative methods to explore the nuanced processes of obtaining access to specialty care for publicly and privately insured CSHCN.


From May 2009 to February 2010, 30 in-depth qualitative interviews (60-90 minutes in length) were conducted with English-speaking family caregivers of CSHCN covered by public insurance (n = 15), private insurance (n = 6), or both (n = 9) in Cook County, IL. We used purposive quota sampling techniques to recruit parents from a group of 102 respondents from a related telephone survey who agreed to follow-up contact. All audio transcriptions and field notes were entered into Atlas-Ti software and analyzed by the authors through a thematic coding scheme.


Respondents varied in their success in obtaining requested specialty care. Several themes emerged that shape access to specialty care for CSHCN in this study: marked differences based upon insurance type, the acuity of a child’s health condition, and the presence of language and cultural barriers in scheduling and attending appointments.


Qualitative interviews with families illuminated current perceptions of inequities in access to outpatient specialty care for CSHCN. Such findings generate questions and concerns about parity across public and private coverage systems for vulnerable children and suggest areas for future research and policy consideration for ensuring access to both primary and specialty care.