Access to Care for Youth with Special Health Care Needs in the Transition to Adulthood

Abstract 

Purpose

To describe access to care and identify factors associated with access for low-income young adults who aged out of a public program for children with special health care needs (CSHCN).

Methods

This was a cross-sectional survey of graduates of the Title V CSHCN program in one California county. Subjects were 77 graduates (55% female) aged 21–24 years with ongoing health care needs. Measures of access to care included having the following: a regular source of care for the main health condition; all needed care since turning 21 years of age; any delayed or forgone care in the past 6 months; health insurance; and continual insurance since turning age 21. Individuals lacking any one access measure were defined as experiencing an adverse transition event.

Results

Of the subjects, 24% lacked a usual source of health care, 27% had gone without some needed health care since turning 21, and 39% had delayed needed care. Although 10% of respondents were uninsured at the time of the survey; 40% had a gap in insurance coverage since turning age 21. Overall, 65% reported at least one adverse transition event affecting access to care. Factors associated with experiencing no adverse transition event were receiving Supplemental Security Income (SSI, p = .007), having received special education services (p = .003), and having been born with the main health condition (p = .013).

Conclusions

Insurance gaps and delayed care are prevalent among these low-income young adults despite ongoing health problems. Greater transition support might improve access by linking them with a usual source of care, identifying insurance options, and encouraging regular use of care.

Keywords: Children with special health care needs, Young adults, Access to care, Transition to adulthood