Children with Special Health Care Needs: Evaluating Care Coordination Services for Children Diagnosed with An Autism Spectrum Disorder

Background: Due to technological advancements and changes in society’s attitude, children with special health care needs, in particular those with Autism Spectrum Disorder (ASD), have more treatment options available to them. These children are more likely to reside in private homes, attend public schools, and to utilize a variety of different medical and educational services. As a result, the medical care of these children has become more complicated and the shift to managed care health plans has resulted in administrative issues that must be addressed in order to receive services. The lack of a single entry point linking systems of health care, social services, education, public health services, and home services makes coordination of care difficult (AAP, 1999). Emerging electronic information sharing systems (EIS) hold particular promise for improving the coordination of care of children with ASD.

Objectives: The purposes of this investigation are to evaluate professional perception of effort in coordinating services for children who have a diagnosis of an ASD, to evaluate professionals’ satisfaction of care coordination services they provide to families of children with an autism diagnosis and to determine the usage of electronic medical records or electronic information systems for providing care coordination services. The data obtained in the study will be used to identify factors that may promote successful care coordination and identify areas where additional supports would benefit children with a diagnosis of an ASD, their families, and professionals.

Methods: Eight hundred participants from four groups: a) the Autism Treatment Network; b) the Autism Special Interest Group of the Association for University Centers on Disabilities; c) the Leadership Education in Neurodevelopmental and related Disabilities network; d) the University Center for Excellence in Developmental Disabilities network received an on-line survey examining:  Demographics, Background, Current Disclosure Practices, Barriers to Effective Disclosure, Recommendations, Electronic Medical Record Use, Care Coordination with EMR/EIS, Care Coordination Practices, and Transitions. The survey was designed after thorough literature review and qualitative data gathered through focus groups and then stringently tested and reviewed for its face and content validity by 10 subject matter experts in the field of ASD. Participants’ responses to the survey were analyzed through quantitative statistical methods (i.e., descriptive statistics, including percent, mean response levels, range of responses), as well as qualitative methods (i.e., review and analyses of written responses).

Results: Preliminary data analysis revealed that considerable variability in care coordination practices continues to exist and significant barriers in communication among providers in health care, financial and school settings and in accessing information about community resources prevail. Satisfaction with care coordination for children with ASD was associated with the scope and extent of electronic information system use. EMR use facilitated decision-making, receiving immediate responses to problems, and assistance with treatment plan implementation and transition planning.

Conclusions: Use of EIS and EMR must be increased to assure family-centered care and improved care coordination enhancing health and functional outcomes of children with ASD.