First experiences with early intervention: A national perspective
BACKGROUND: Families of young children with disabilities are eligible for early intervention services as mandated by Part C of the Individuals With Disabilities Education Act. Although prior research has shown that families are generally satisfied with early intervention, this research has not been based on a nationally representative sample of families, nor has it systematically examined perceptions of the initial experiences entering early intervention. OBJECTIVE: This study was designed to determine families' initial experiences in determining their child's eligibility, interactions with medical professionals, effort required to obtain services, participation in planning for services, satisfaction with services, and interactions with professionals. METHOD: We interviewed a nationally representative sample of 3338 parents of young children with or at risk for disability. All the children had recently entered an early intervention program operated under the auspices of Part C of the Individuals With Disabilities Education Act. RESULTS: The average age at which families reported a concern about their child was 7.4 months. A diagnosis was made, on average, 1.4 months later, the child was referred for early intervention an average of 5.2 months after the diagnosis, and the individualized family service plan was developed 1.7 months later or at an average age of 15.7 months. Most families were very positive about their entry into early intervention programs. They reported discussing their concerns with a medical professional and finding that person helpful. Families reported relative ease in accessing services, felt that services were related to their perceived needs, rated positively the professionals working in early intervention, and felt that they had a role in making key decisions about child and family goals. A small percentage of families experienced significant delays in getting services, wanted more involvement in service planning, or felt that services were inadequate, and nearly 20% were unaware of the existence of a written plan for services. Minority families, families with limited income, and families with less-educated mothers were more likely to report negative experiences. CONCLUSIONS: We conclude that the beginning of early intervention services generally is highly successful and responsive, a finding that should give pediatricians more confidence in referring families for early intervention services. However, research and local evaluation efforts are needed to develop strategies to assure that all families receive services in a timely and appropriate fashion.