In a nationally representative sample of 3,338 parents of young children with or at risk of disabilities, most of those entering early intervention services found the process satisfactory, say researchers at the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill.
"Our data suggest that the early intervention system operated under Part C (IDEA) provides a positive and supportive entry into services for the vast majority of families enrolled in early intervention programs," said Dr. Don Bailey, lead author of an article on the study in the April issue of Pediatrics, a professional journal. Bailey also directs the institute.
"Families like early intervention professionals, report relative ease in participating in early intervention programs, believe that services are based on individual needs and feel that they have a role in making key decisions," he said. A few aspects of the process, however, warrant closer examination and possible changes, Bailey said.
"The average time of 5.2 months between diagnosis and referral seems unnecessarily long," he said. "Pediatricians should move from developmental surveillance to a more proactive model of developmental screening of infants and young children, followed by more prompt referral to early intervention."
Other findings from the survey are that:
- A small percentage of families experienced difficulties accessing services, felt the amount of services received were inadequate, and 18 percent were not aware of a written plan for goals and services.
- About 25 percent of children entered Part C services before 7 months of age.
- Almost all families (97 percent) thought that the services they received were somewhat or highly individualized.
- Most families believed that their child was getting the right amount of therapy and other intervention services. About 14 percent, however, wanted more speech, occupational or physical therapy.
- Family characteristics such as ethnicity, household income and caregiver education were related to having more difficulty entering the early intervention system. Although only a small percentage of any group experienced problems, the likelihood of having a negative experience was higher for families who were minority, with limited income or limited education.
- Caregivers reported a relatively short time between first concerns and first diagnosis.
"It appears that the problem lies not in the length of time between concerns and diagnosis, which averaged only about 1.5 months, but rather the time from diagnosis to referral for services, which averaged 5.2 months," Bailey said.
"Also, the length of time from concern to early intervention is much longer for children with developmental delays who enter early intervention at 20 months, a later average age than other children," he said.
Parents of children with developmental delays had more difficulty than parents of children with established conditions or children at risk.
"This may reflect the fact that children qualifying under the criteria of Part C are eligible due to conditions or experiences that are relatively well defined and mandated by legislation at the state level," Bailey said. Children who qualify due to developmental delays must first demonstrate a delay, and pediatricians or other professionals may be reluctant to say that a child is delayed unless the delay is severe, he said.
The study was part of the National Early Intervention Longitudinal Study through a grant from the U.S. Department of Education to SRI International with Kathleen Hebbeler as the principal investigator and in collaboration with FPG Child Development Institute.
Note: Bailey can be reached at (919) 966-4250 or bailey@mail.fpg.unc.edu. This release is available online at http://www.unc.edu/news/newsserv/archives/apr04/little041904.html
FPG Child Development Institute Contact: Loyd Little: 919-966-0867 or loyd_little@unc.edu.
UNC News Services Contact: David Williamson, (919) 962-8596
By LOYD LITTLE
FPG Child Development Institute
Journal
PEDIATRICS