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To the Editor.—
In their article regarding early-intervention services provided through Part C of the Individuals With Disabilities Education Act, Bailey et al1 express concern that the length of time is excessive between the identification of a child with a possible disability and referral for intervention services. However, whether this delay in referral for intervention is harmful totally depends on whether the interventions available are effective.
The Part C program serves a large number of children with a variety of disabilities or risk factors, and the effectiveness of the interventions differs with the disability involved. For example, for children diagnosed early with hearing loss, the effectiveness of early intervention is well-supported by existing data, and a delay in referral for intervention may have a substantial negative impact on the future development of the child with hearing loss.
Depending on how risk is defined, varying numbers of children, perhaps a majority, who might be referred for early-intervention services because they have been deemed at risk, will develop normally even if early-intervention services are not provided. For such children, it can be argued that immediate referral for intervention services is not warranted, especially when the availability of intervention services is limited.
Another group of children is those who have a documented delay but for whom intervention services have not been shown conclusively to be effective. For example, should a 3-month-old child with Down syndrome be referred immediately for physical therapy with the expectation that early intervention will improve muscle tone and result in the child achieving the ability to roll and sit unsupported at an earlier age? Should the same child be referred to speech therapy? Currently, data do not exist demonstrating the effectiveness of such interventions.
Until there are more data available regarding the effectiveness of early-intervention services, no broad generalizations can be made regarding delays in referral to intervention services provided by the Part C program.
REFERENCE
Kathleen Hebbeler, PhD
Donna Spiker, PhD
Sangeeta Mallik, PhD
SRI International,
Menlo Park, CA 94025
In Reply.—
The efficacy and desirability of early intervention for children with disabilities have been debated in various forums for >40 years. Based on logic, data, and assumptions from a variety of areas (eg, neurobiologic development, concepts of critical and sensitive periods, attachment theory, infant learning paradigms, the incredible amount of change that occurs in human development during the first years of life, research on family stress and coping), a national program of early-intervention services became a reality for infants and toddlers with disabilities with the 1986 passage of Public Law 99–457, now Part C of the Individuals With Disabilities Education Act. Several recent reviews from the fields of medicine, psychology, and education reach a similar conclusion about early-intervention efficacy: early intervention can result in significant and measurable benefits for both children and families.1–4 Recognizing the potential value of early intervention and the accompanying need for earlier identification, the American Academy of Pediatrics has recommended that pediatricians incorporate systematic screening of all children rather than relying on more passive surveillance of development.5
In a recent Pediatrics article,6 we reported data based on the initial experiences of a nationally representative sample of families whose children had recently enrolled in Part C early-intervention programs. Most families were very positive about their entry into early intervention. However, we reported an average delay of 5.2 months between initial diagnosis and a referral for early intervention. We suggested that the average time between diagnosis and referral seemed "unnecessarily long," speculated as to possible reasons for this delay, and suggested future research that could help explain this more fully.
In response to this article, Dr Cunningham argues that the extent to which this delay constitutes a problem cannot currently be determined because of lack of research on the effectiveness of early intervention for children with different types of disability. We agree with the basic premise that more focused research is needed to look at a wide range of outcomes for children who vary widely in terms of the nature and cause of their disabling condition. Particularly critical would be research to determine if advancing identification of disability and referral for services by 6 to 12 months would have marked benefits for children and families, and the field will always be served well by additional research on how to improve the effectiveness of intervention services.
However, it is clear that earlier identification and referral could result in a number of benefits to children, families, and society. We know that earlier identification could 1) provide earlier access to a nationally available program of services that parents almost uniformly endorse as positive and helpful for them and their children; 2) prevent the loss of confidence in parenting competence that occurs when parents are assured that nothing is wrong with their child but they continue to experience difficulty in parenting a child with delayed development or challenging behavior; 3) prevent the financial and emotional costs of the "diagnostic odyssey" that can occur when parents make multiple visits to physicians, psychologists, and other specialists to determine validity of their concerns about their children; 4) support the development of children with conditions with a high probability of resulting in a delay, such as Down syndrome, so that these children’s developmental trajectories can stay closer to typical development; 5) provide ongoing assistance and information to the parents of these children as they cope with learning how to parent an infant with a disability. Also, for children with inherited disorders, an earlier diagnosis provides important information for families regarding reproductive risk. We suggest that these benefits are sufficiently compelling to warrant concern about current delays in both identification of children with disabilities and in referral to early-intervention services.
REFERENCES
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