Assessing Children/Young Adults with Special Health Care Needs: A Survey of the Parent/Guardian Perspective

Stephanie Ivy, MPH1, Beryl W. Polk, PhD, MS, CPM2, Jason Brown, MHSA2 1 2 Mississippi Department of Finance and Administration Mississippi State Department of Health

BACKGROUND
The Childrens Medical Program (CMP), Mississippis Title V Children and Youth with special healthcare needs (CSHCN) program, provides care coordination and assists with access to specialty services for enrolled children at the public health district level. The prevalence of children with special healthcare needs is 15.1% nationally and 16.4% in Mississippi. Gaps in services for children and youth with special health care needs in Mississippi need to be identified. A survey tool was developed for inquiry into parent/guardian concerns.

RESULTS
Two-hundred and twenty-five surveys were completed. The mean age of the child/young adult was 10 years of age. 78% of the respondents had Medicaid/CHIP insurance coverage.

LIMITATIONS
Respondents were limited to patients enrolled in the Childrens Medical Program and present for an appointment during the administration of the survey Survey questions may have been misinterpreted

OBJECTIVES
Evaluate utilization of health care and support resources Assess barriers to healthcare utilization Assess parental satisfaction

Health Care/Support Services and Communication 44% of respondents reported they didnt know or werent sure about available support services. 95% of respondents reported satisfaction with their involvement in making decisions with the healthcare team. Communication with the healthcare providers rated at least good by 86% (very good-53%, good-33%).

CONCLUSIONS
Respondents reported high levels of satisfaction and
communication regarding their child/young adults healthcare. Clinic services were well utilized although the child/young adult had to travel long distances to receive medical care/treatment. Medicaid was the primary payment source for health care services; however, some respondents had issues with limited coverage for needed services. Most respondents reported that they were referred for non-medical services, but some community-based services were not as well known or utilized.

METHODS
The CYSHCN in Mississippi Parent/Guardian Survey included 15 quantitative and qualitative items. The survey was administered from August 2010 to May 2011 at specialty satellite clinics and Blake Clinic, a multidisciplinary clinic. The parent/guardian completed a survey for each child/young adult who was receiving CMP benefits.

Health Care Services Utilization Patients visited Specialty Care Physicians (SCP) an average of six times per year, with an average distance of 71 miles between their home and SCP. Primary care physician (PCP) visits occurred, on average, seven times per year, with an average distance of 16 miles to the PCP from the home. On average, patients lived 14 miles from their pharmacy and traveled there 10 times per year.

RECOMMENDATIONS
Understanding the needs of Mississippis CYSHCN is critical in promoting positive health outcomes. Recommendations for future improvement of program services include: 1) Evaluate the satellite clinic needs in each public health district 2) Increase knowledge and utilization of support services 3) Collaborate with medical providers on the development of a guide for transitioning adolescents from pediatric to adult services 4) Expand and revise the survey based on current results and national data for future administration

Qualitative Perceptions Parents/guardians provided comments on Medicaid, financial, and insurance coverage limitations, support and satisfaction related to staff/clinic, location/transportation issues, health status of child/young adult, and other concerns.

Figure 1: Location of CMP Satellite Clinics