Research-Occupational Therapy Program
Epidemiology|Health Services|Outcomes
Ruth Benedict, Dr.P.H., OTR
rbenedict@education.wisc.edu
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.
Related publications:
Arneson, C., Durkin, M., Benedict, R.E., Kirby, R.S., Yeargin-Allsopp, M., Van Naarden Braun, K., & Doernberg, N.S. (2009). Prevalence of Cerebral Palsy-Autism and Developmental Disabilities Monitoring Network, Three Sites, United States, 2004. Disability & Health, 2 (1), 45-48.
Oftedahl, E., Benedict, R., & Katcher, M. L. (2004). National survey of children
with special health care needs: Wisconsin-specific data. WMJ, 103(5), 88-90.
Benedict, R. E., & Farel, A. M. (2003). Identifying children in need of ancillary
and enabling services: a population approach. Social Science & Medicine, 57(11),
2035-2047.
Benedict, R. E., Farel, A. M., & Howell, E. (1999). Estimates of children with
special needs in North Carolina. (Statistical Brief No.
18). Raleigh, NC: North Carolina State Center for Health Statistics.
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.
Related publications:
Benedict, R. E. (2008). Quality medical homes: Meeting children’s needs for
therapeutic and supportive services. Pediatrics, 121 (1), e127-134.
Benedict, R.E. & Baumgardner, A. (2009). A population approach to understanding children's access to assistive technology. Disability & Rehabilitation, 31 (7), 582-592.
Benedict, R. E. (2006). Disparities in use of and unmet need for therapeutic and
supportive services among school-age children with functional limitations: A comparison
across settings. Health Services Research, 41(1), 103-124.
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.
Grant No. R-788-09 (Benedict, PI) 1/1/2009-12/31/2010 $100,000
Source: Cerebral Palsy International Research Foundation
Title: Outcomes of Interventions for Spasticity Management among Children and Young Adults with Cerebral Palsy and their Caregivers
Grant No. (Benedict, PI) 1/1/2009-12/31/2009 $20,000
Source: Pedal-with-Pete Foundation
Title: Extension of Outcomes of Interventions for Spasticity Management among Children and Young Adults with Cerebral Palsy and their Caregivers