CORVALLIS, Ore. - Children under age 3 who have or are at risk of a developmental disability are eligible for services to improve cognitive, behavioral and physical skills under the federal Individuals with Disabilities Education Improvement Act (IDEIA).
But many eligible children do not enroll in those services and the rates of enrollment vary in part by which agency at the state level is serving as the lead, or administrator, for the programs, new research from Oregon State University has found.
Enrollment rates tend to be higher when the lead agency is health-focused and lower when the lead agency is education-focused, according to Megan MacDonald, an assistant professor in OSU's College of Public Health and Human Sciences and one of the study's authors.
"There is a big gap between the number of children with disabilities or delays and the number of children enrolled in early intervention services," MacDonald said. "And it seems to be tied, in part, to who is in charge."
The findings were published recently in the Journal of Early Intervention. The lead author is Erica Twardzik, who worked on the project as a student at OSU and now is at the University of Michigan. Alicia Dixon-Ibarra, also of OSU, is a co-author.
The IDEIA is a federal mandate that is implemented by states. It is designed to ensure that children with disabilities through the age of 21 have access to free and appropriate educational services. Programs for children under age 3 are designed to address both diagnosed disabilities as well as delays that could affect a child's school readiness and quality of life, such as speech or motor skills.
"It's really intended to address any aspect of a child's development that is delayed during the critical early years," MacDonald said. "The longer a delay persists, the wider the gap may become. The one thing we know about early intervention is that earlier implementation is better."
Early intervention may also reduce the need for some or all special education services when a child enters school, she said. That may allow for more inclusionary practices at school and also could lead to potential cost savings for states.
However, enrollment in these services is low across the country. While enrollment criteria varies from state to state, the variation alone has not accounted for the differences in enrollment rates, MacDonald said.
In their study, the researchers examined how the role of the administering body might influence enrollment rates. The administering body, or lead agency, plays a variety of roles in the support of the program, including allocating funding, sponsoring trainings and conferences and developing public awareness programs. In most states, the lead agency is either a department of health or a department of education, though in some states the agency may be the department of public welfare, developmental services, economic security or similar.
Using several national data sources, including the U.S. Census, the National Surveys of Children's Health and state agency websites, the researchers found that the odds of a child enrolling in eligible services were significantly higher when the lead agency is health-focused. When the lead agency is education-focused, the odds are lowest.
Education agencies are less likely to come in contact with children until they enter preschool around age 3 or 4, or sometimes even later, at kindergarten. But most children have regular "well child" visits with their doctor and the physicians assess development and conduct initial screenings of children, MacDonald said. That's likely why primary care physicians are the most common source of referral to services for children under age 3.
"For school-age kids, it makes sense that the lead agency providing services is the education department of a state," MacDonald said. "But children who are not in school seem to be better served by a state's health department, according to this study. When the health agency is in the lead, there's a direct connection to service providers for families."
The findings indicate that physicians and health agencies play an important role in identifying children who could benefit from early intervention services and referring them to the appropriate programs, but the finding is only one piece of a larger puzzle about low enrollment, MacDonald said.
Educating parents about the importance of developmental assessments and availability of services is also key to ensuring children get off to a good start, she said.
"The message to parents is that it's OK to have these conversations with your pediatrician or other service providers," she said. "There is no harm in seeking services or getting interventions for your child."