Children with Special Needs: Epidemiology, Health Services and Outcomes Research
- How do we define and classify the special needs of children?
- What is the prevalence of functional limitations among children with chronic conditions?
- Do children that experience limitations in occupational participation have access to needed therapy and support services?
- Are there disparities in access to services associated with a child’s personal
characteristics, family resources or features of the service delivery system?
- What factors determine whether children’s service needs are met?
- What are the outcomes of therapy and support services provided to children with special needs?
- What constitutes quality service delivery system for children with special needs?
Dr. Benedict and colleagues are using epidemiological, health services and outcomes research methodologies to enhance our understanding of the special needs of children as well as the effectiveness of the delivery system in serving those needs. Through collaborations with UW-Madison faculty in the Departments of Population Health Sciences and Communicative Disorders, as well as UW-Health clinicians, the Waisman Center, and the Centers for Disease Control, several active studies are underway.
Epidemiology of Functional Limitations Among Children with Special Needs
Using epidemiological methods, Dr. Benedict’s research program is addressing methods of classifying and tracking children with special needs, particularly those whose conditions affect their participation in daily life activities. Dr. Benedict is collaborating with the Wisconsin Autism and Developmental Disabilities Surveillance Project (WisADDS), under the direction of Dr. Maureen Durkin, to conduct surveillance of children with cerebral palsy in 10 counties in southeast Wisconsin. This project is part of a multi-site Autism and Developmental Disabilities Surveillance (ADDM) project administered by the Centers for Disease Control. Dr. Benedict, in collaboration with Jean Patz, MS, OTR, have taken the lead on designing a methodology that moves the surveillance beyond case status to determination of a child’s level of function. Reliability and validity studies of the methodology are currently being conducted and tested in four sites across the country. Surveillance of functional level will provide important information for monitoring advances in intervention techniques, understanding changes in the composition of cases over time, and estimating the cost of care for programmatic and policy purposes.
Health Services-Access to and Quality of Therapy and Support Services for Children
Children with special needs and their families typically receive a diverse array of health, educational and social services intended to promote their full participation in home, school and community life. Dr. Benedict’s research examines the determinants and patterns of therapy and supportive service use among children having functional limitations and the role of the service delivery system in meeting children’s needs. Using the National Health Interview Survey – Disability Supplement and the National Survey of Children with Special Health Care Needs, Dr. Benedict has identified disparities in access to therapy and support services associated with characteristics of the child, the family and the service delivery system. Currently, Dr. Benedict’s research team is using a mixed methods approach to better understand which characteristics of the assistive technology (AT) service delivery system promote children’s’ access to quality AT services. Findings of these studies will extend our knowledge of current policies, programs and practices and contribute to initiatives to ensure that children with special needs and their families receive the supports and services they need.
Outcomes of Neurosurgical and Therapy Interventions for Children with Motor Limitations
A third strand of Dr. Benedict’s research focuses on the impact of specific interventions on child and family outcomes. In collaboration with Dr. Leland Albright and the Spasticity and Movement Disorders Clinic at the Waisman Center, Dr. Benedict is leading an interdisciplinary, comprehensive study of the effects of Intrathecal Baclofen Pump (ITB) placement and subsequent therapy on the health, function and quality of life of children or young adults with movement disorders and their caregivers. Using a longitudinal design, measures of each participant’s physiological status, motor control, function, participation, quality of life, and burden of care will be obtained prior to and following the intervention. This work will provide vital information on the effectiveness of neurosurgical and therapeutic interventions for children with movement disorders.