A Different Kind of Test

Margaret Dunkle is a senior fellow with the Health Insurance Reform Project at George Washington University, in Washington. She lives primarily in Los Angeles, where the California Endowment and the Annie E. Casey Foundation support her work on autism policies and as an adviser to the Los Angeles Children’s Planning Council. Dr. Louis Vismara, a retired cardiologist, is a parent of four children, one of whom has autism. He works as a consultant with the California state legislature and serves as a commissioner on the California First 5 Commission.

An important part of ensuring that every child enters school ready to learn is to identify problems early and then address them before they become overwhelming. As a country, we now have the capacity to do a better job than ever before of taking this important “stitch in time.” The growing focus on young children is propelled by an explosion of knowledge about early brain development. The public’s commitment to making the most of these breakthroughs is epitomized by state actions such as California’s “First 5" commissions, which use tobacco-tax money to help children up to age 5.

We have the tools, and increasingly the will, to identify disabilities, delays, and disorders in infants and preschoolers. But all too often the mental- health, learning, and behavioral problems of the very young fester unattended, missing the critical womb-to-5 window of opportunity when a child’s brain, body, and behavior change at the most astonishing rate. Late identification forces states, schools, and taxpayers to foot the bill for expensive special education fixes to problems that could have been cured, or at least treated more effectively and more cheaply, during the preschool years. Consider these facts:

Many people think the problem is that we don’t know how to spot problems in very young children. But they are wrong. Good screening instruments now exist—tools that are valid, reliable, sensitive, and specific. These screening tools work well and consistently, they correctly detect children with problems, and they do a good job of identifying children without problems.

• An estimated 5 percent to 8 percent of children under age 5 have some sort of disability or chronic condition, such as autism, cerebral palsy, diabetes, epilepsy, mental retardation, or orthopedic problems. In fact, more than 5 percent of 3- to 5-year-olds nationwide are in special education programs. The American Academy of Pediatrics cites a much higher figure, saying that from 12 percent to 16 percent of children have developmental or behavioral disorders.

• The number of children with autism, where early intervention is essential, is soaring. (Autism is a neurological disorder that causes serious problems with communication, learning, and social interactions.) A January 2003 editorial in the Journal of the American Medical Association estimates that nationwide, one in every 170 children is affected by an Autism Spectrum Disorder. The number of people with autism in California’s Developmental Services System doubled between 1998 and 2002.

• Early detection and intervention work. As the National Academy of Sciences said in its influential 2000 report “From Neurons to Neighborhoods": “Compensating for missed opportunities, such as the failure to detect early difficulties or the lack of environments rich in language, often requires extensive intervention, if not heroic efforts, later in life.” Although economists quibble about the exact numbers, study after study shows that intense preschool services and treatment produce huge academic, social, and economic benefits—including savings to society of $30,000 to $100,000 per child. And dollars saved are surely not the only measure of value, especially to the one in 25 households with a preschooler with a disability.

• White children with disabilities are often identified and helped at much younger ages than ethnic- or language-minority children. A recent study of Pennsylvania children covered by Medicaid found that white children were diagnosed with autism more than a year earlier than their African-American or Latino counterparts—the average age was 6 years and 3 months for white children; 7 years, 9 months for African-American children; and 7 years, 4 months for Latino children.

In a 2001 policy statement, the American Academy of Pediatrics identified several high-quality parental-report screening instruments that take only a few minutes to administer. The 10-question PEDS, or Parents’ Evaluation of Developmental Status, can be used from birth to 8 years and takes two minutes. The Ages and Stages Questionnaires can be used from birth to 5 years and take seven minutes. The Child Development Inventories can be used from 3 months to 6 years and take 10 minutes. The American Academy of Neurology and the Child Neurology Society also recommend these three instruments for screening children for autism.

The recommendations confirm what most of us already know: Parents are the best experts on their children. These parental-report tools provide an effective way to capture what parents know and share it with doctors and other medical professionals. In fact, pediatricians who use one of these simple instruments identify from 70 percent to 80 percent of children with problems. Repeated or “periodic” screenings increase these percentages. That’s the “good” news.

The bad news is that, at most, only 15 percent of pediatricians always use a screening tool, according to a not-yet-published American Academy of Pediatrics study. Seven out of 10 simply rely on their clinical judgments—even though this method identifies fewer than 30 percent of children with mental retardation, learning disabilities, language impairments, and other developmental disabilities, and fewer than 50 percent of children with serious emotional and behavioral disturbances. In other words, physicians who simply “eyeball” their youngest patients—as most do—miss half the problems that a two-minute screening tool would catch immediately.

The number of children and families whose lives could be improved by better early identification is staggering. If every child had a high-quality developmental check-up—and communities followed up with services and treatment—thousands of children with problems would have better lives. Also, parents of children who get “no problem” screening reports would be stronger partners with health-care providers and better able to identify any danger signs that emerge.

To look at our home state of California: At least 124,000 California children under age 5 have or will develop a disability or mental or behavioral disorder, assuming a conservative 5 percent disability rate. If a good screening instrument were used with all of these children, 75 percent—93,000 kids—could be identified and get needed help early, when it could do the most good. With repeat screenings, this number would go up even more. But as things stand, fewer than half—56,000—will be identified as needing help, much less get it.

These numbers take on special importance as Congress reauthorizes the 1975 special education law—the Individuals with Disabilities Education Act—which promises children with disabilities a “free, appropriate public education” in the “least restrictive environment.” Much of the current IDEA debate centers on the economic cost of educating more than 6 million students with disabilities nationwide—almost 13 percent of all students. This long-term cost is ratcheted up every time a child enters kindergarten or 1st grade with problems that could have been—but weren’t—addressed during the preschool years.

Our country’s pathetic record of identifying young children who need early help could be turned around in a couple of years if school leaders, policymakers, and communities set their minds to it. Here are five practical steps that would make a big difference:

With good ideas, strategy, and the public behind them, schools and communities can change what happens in doctors’ offices: They can supply local newspapers with informative letters and editorials, send fliers home with older siblings, sponsor speeches on screening and development at meetings of local civic and social groups, and partner with the local health department and similar agencies stressing infant health and development. The school board or local city or county council can hold hearings to learn how good a job the community is doing in identifying and helping very young children with problems.

• Insist that pediatricians check every child with a good screening instrument—not just once, but regularly throughout the preschool years. The best screening tools include the three parent-based instruments—PEDS, the Ages and Stages Questionnaires, and the Child Development Inventories—mentioned above. Parents need to know that they have the right to expect doctors to use a good tool and not just “eyeball” their children during well-child visits. Pediatricians need to know that these tools exist, that they work, that they are inexpensive, and that their receptionists can be trained to help parents fill out the forms.

Early identification is the essential first step to providing infants and preschoolers who have problems with the services and treatment they need in order to grow and learn. Let’s get started by making it a priority to assure that every infant and preschooler get screened—early and often—with one of the parental-report screening tools that the American Academy of Pediatrics highlights.

• Increase the payments physicians receive for screening for developmental delays and problems. Like it or not, much of the health care all of us get is driven by insurance and billing: A reimbursable service or procedure is more likely to be done than one that isn’t. Several members of Congress—Reps. Dave Weldon, R-Fla., Henry A. Waxman, D-Calif., Christopher H. Smith, R-N.J., and Mike Doyle, D-Pa.—have tackled this issue by asking U.S. Secretary of Health and Human Services Tommy G. Thompson to work with the American Medical Association to assign a “value” to the billing code for screening. This accounting adjustment would make explicit the importance of early identification. It would also push insurers to increase reimbursement for high-quality screening, rewarding health-care providers who do a good job of identifying developmental delays and problems.

• Train parents, child-care workers, and others to use the parent-based screening tools, rather than depending entirely on doctors and other professionals to flag problems. With a little training (adult education classes, workshops, seminars, and the like), child-care providers, teachers, social workers, Sunday school teachers, family members, and others can effectively administer, for example, the PEDS test. Such tools help parents clearly describe concerns about their child’s learning, development, and behavior—and this information can enable doctors and other professionals to zero in quickly on the most important issues and guide the child and family to effective interventions.

• Provide stronger incentives in the IDEA for states and communities to identify and help young children with emerging disabilities and developmental delays. For example, Congress could show that “no child left behind” is more than a slogan by increasing the federal contribution to special education funding for preschoolers, which enrolls almost 700,000 3- to 5-year-olds. Currently, the federal per-child contribution for preschool children with disabilities is less than half that for school-age children, and the gap is widening. For infants and toddlers, Congress could revamp the rules for IDEA early-intervention programs, to nudge states and schools to do a better job of finding and helping children from birth to age 2 who have problems. Even as we have learned more about the importance of the first years, the federal contribution for these youngest children has dropped by more than $150 per child since 1992. As they move through elementary and high school, more of these children should be able to participate in regular rather than “special” education classes—a boon to schools, communities, and taxpayers, as well as to the families of children with disabilities.

• Integrate early identification and treatment of mental-health, learning, and behavior problems into core educational standards. Some states and communities are already taking concrete steps to emphasize that social and emotional well-being directly affects learning: It is much more than “plays well with others.” For example, the Los Angeles County Children’s Planning Council and First 5 Los Angeles are working together to identify countywide indicators of school readiness that include the degree to which preschool children needing special education actually receive it. And a new Illinois report on children’s mental health recommends that the legislature require that the state board of education incorporate social and emotional standards into the Illinois Learning Standards.

Some problems—like some disabilities—are not fixable, at least not yet. But the solution to our country’s poor record of identifying infants and preschoolers with problems is at our fingertips. We just need to do it.

Margaret Dunkle is a senior fellow with the Health Insurance Reform Project at George Washington University, in Washington. She lives primarily in Los Angeles, where the California Endowment and the Annie E. Casey Foundation support her work on autism policies and as an adviser to the Los Angeles Children’s Planning Council. Dr. Louis Vismara, a retired cardiologist, is a parent of four children, one of whom has autism. He works as a consultant with the California state legislature and serves as a commissioner on the California First 5 Commission.