Improving Developmental Screening Through Public Policy

Good public policy – like good medicine – is part science and part art. The best practitioners excel at both. Public policy decisions matter a lot, affecting virtually every aspect of our health care system – from reimbursement rates to privacy protections and immunization requirements.

Recognizing this connection, a collaborative group in Los Angeles County is using public policy to improve developmental screening. The goal is simple – assuring that all young children receive high-quality developmental screening and that any child needing help receives it at the earliest possible moment. The path to reach this goal is complex, involving many twists and turns, and many choices about where to start, with whom to partner, and which policy tools to use.

The Issue Is Clear & Compelling

Developmental delays, disabilities, and learning, behavioral and social-emotional problems are much more common than most people realize, affecting one in every six children across all economic levels, and all racial and ethnic groups (1). Early intervention works, saving public money and family angst by dramatically improving a child’s health, learning, and social-emotional development (2,3). The science of developmental screening has matured remarkably so that pediatricians now have high-quality tools, such as the parental report Parents' Evaluation of Developmental Status (PEDS), Ages and Stages Questionnaires (ASQ), and Child Development Inventories (CDI) (4). These tools also work well in non-medical settings – for example, in Head Start and other community programs, in WIC (nutrition) centers, in early intervention programs, and even on the Internet.

Yet, medical practice has not kept pace with this new evidence. Few pediatricians always use a screening tool. Most rely on clinical judgment, even though this method identifies less than 30 percent of children with mental retardation, learning disabilities, language impairments, or other developmental disabilities, and less than 50 percent of children with serious emotional and behavioral disturbances (5).

How, though, does one translate the goal of universal screening – and the current lack of it – into policy action?

All Policies Are Personal

Former Speaker of the House of Representatives and master policymaker Tip O'Neill said: “All politics is local.” Similarly, all policies are personal. While facts and figures may identify the right policy track, they rarely ignite the fire in the belly or tenacity required to enact a law or successfully navigate the bureaucratic regulatory process.

To use myself as an example: after working for many years on policies affecting women, children and families, I chose to focus on early identification and help for children with disabilities, developmental delays and learning problems for a very personal reason. My nephew and his wife had an adorable baby girl who developed perfectly normally until she was about 18 months old – starting to speak, returning your gaze with a twinkle in her eye, laughing and engaging everyone around her, including her older brother. Then, suddenly and dramatically, her behavior changed.

While data inform, a human connection inspires.

Finding Partners – the Los Angeles County Early Identification & Intervention Group

But data and inspiration are not enough. You also need partners, a vision and a plan.

In Los Angeles County what has evolved into the Early Identification and Intervention Group began just a year ago with an ad hoc lunch with friends and colleagues from the health, mental health, education, philanthropic, early childhood education and advocacy communities. All had a big stake in the issues, yet each saw them through a very different lens. Over lunch, laughter and discussion – building on relationships already established through the public-private Los Angeles County Children’s Planning Council – we quickly identified common concerns, and leadership sprouted to move from talk to action.

Juggling Across Sectors

Everyone acknowledged the importance of the different perspectives – and we saw how they were reflected in the many programs that might affect a single family. For example:

Schools were especially interested in special education for children with disabilities (propelled by the federal Individuals with Disabilities Education Act – IDEA), noting the high costs of providing services and wondering how much might be saved by earlier and more effective intervention.
In the health sector, while pediatricians are in a perfect position to spot problems early, few always use a high-quality screening tool. Publicly funded insurance and service programs (such as Medicaid/EPSDT and Foster Care) mandate screening but do not provide incentives to follow through. And most physicians are not trained to help families connect with needed services.
Child welfare experts noted that a child in foster care (which is largely funded with federal money) is four times more likely to have a disability than a child living with a parent, and that mandated screenings for these children often fall between the cracks (6).
The early childhood education and child care sector noted that, while the Head Start program requires that participating children be screened, it does not require that they be screened with a high-quality instrument. The result is that many Head Start programs unwittingly use second-rate tools that miss important problems.
The mental health sector saw how early identification could address, and hopefully resolve, social-emotional problems sooner rather than later, noting that many infants and toddlers with unaddressed problems grow up to be teenage mothers or entangled with the criminal justice system.

Efforts by the County’s Chief Administrative Office, the Children’s Planning Council, First 5 LA (tobacco tax funds used to help children from birth to age 5) and others laid the groundwork for many sectors to work together to figure out which policy ball to catch first – a daunting but not impossible task in a place as large as Los Angeles County. (It is hard to exaggerate the scale of Los Angeles County: it has a population greater than 42 states – almost as many people as the entire state of Michigan.)

With a collective will to act, yet so many possible points of intervention, where does one start?

The Devil Is In The Details

One concrete issue immediately emerged: physician reimbursement for developmental screening. We learned that Los Angeles Congressman Henry Waxman, along with Congressman Dave Weldon of Florida and others, was nudging HHS Secretary Tommy Thompson to take the lead to assign, for the first time, a “value” to the diagnostic code for developmental screening (#96110). We drafted comments applauding these improvements and several groups went on record, most notably the Los Angeles County Department of Health Services.

As we jumped in, we learned new jargon. For example, “relative value unit” (“RVU”) is the term used to determine how much physicians get paid for a specific procedure or service.

Perhaps most importantly, these comments provided an immediate way to speak and act jointly. As the letter from Thomas Garthwaite (Director of the LA County Department of Health Services) and Jonathan Fielding (Director for Public Health) said: “Our goal is for every young child in Los Angeles County to receive a high-quality developmental screening, and for those who need early intervention to receive it at the earliest possible moment.”

Working Across Levels of Government

As these comments to the federal Centers for Medicare and Medicaid Services illustrate, we recognized that reaching our goals for developmental screening and follow-up would require intergovernmental maneuvering, even perhaps (gasp!) partnership.

Similarly, at the state level, this past summer the Los Angeles County Early Identification and Intervention Group submitted comments to the California Medi-Cal Managed Care Division. The Group supported MMCD’s broad definition of “children with special health care needs,” which included children at increased risk for problems as well as those with already-identified problems.

The Group also proposed an improvement: that healthcare plans be allowed to use high-quality parental-report tools (such as PEDS, ASQ and CDI) as well as the CAHMI (Child and Adolescent Health Measurement Initiative) tool without having to get further approval from the state. The rationale was that PEDS, ASQ and CDI identify children who are at risk for problems or who have unidentified problems – and that children with already-identified problems (which the CAHMI tool flags very accurately) can be identified by matching administrative data. Face-time or phone-time with parents is a precious commodity that should be used to get information not otherwise available.

Staff Are Gatekeepers

Speaking of face time, few policymakers have the luxury or temperament to delve deeply into even the most important issues, must less read academic studies that meander for pages and never answer their specific questions. Rather, they rely on trusted associates, friends and staff. This is especially true in Congress: while the Representatives and Senators vote, staff, especially committee staff, typically identify the options considered. If staff don’t understand an issue, it is unlikely to be on their list.

Since, in a previous position, I convened bipartisan Washington seminars for Capitol Hill and Administration staff, I recently convinced two colleagues to join me on a “field trip” to talk with some key Congressional staff about standards for developmental screening. One, Frances Page Glascoe, is a well-known authority and developer of the PEDS screening tool. The second, Cynthia Landes (whom I hijacked from her vacation on the premise that she needed “a real Washington experience”), is a health professional in Los Angeles doing developmental screenings through a school-funded program at a WIC site. (WIC, a federal program that supports nutrition education, food supplementation and breastfeeding, reaches 95 percent of all eligible low-income women and children in Los Angeles County.)

Build on What You Learn

As an educational team, we spoke with both Republican and Democratic committee staff members about the importance of developmental screening and explored ways to assure that federal funds support only high-quality screening, not screening with no tool or an inferior tool. Not surprisingly, this was a new topic to most. Yet, across the political spectrum, they were receptive and offered important insights about how to frame a compelling case and identify upcoming legislative windows of opportunity.

With this knowledge, we developed a working definition of what constitutes a “high-quality developmental screening tool” that we are currently vetting and tweaking, so that it will be ready to go when a legislative or regulatory opportunity arises.

The science and art of public policy reflect our democracy – rarely linear, usually downright untidy, balancing a chorus of diverse perspectives, and as often as not propelled by a real or perceived crisis.

In terms of developmental screening, our country truly does have a crisis that is not yet widely perceived. While improved public policy cannot single-handedly resolve this crisis, it can point our country – and hundreds of millions of dollars of public funding – in the right direction. That’s a good start.

Margaret Dunkle is a Senior Fellow at the Center for Health Services Research and Policy, George Washington University, Los Angeles, California.

References

Lavigne JV, Binns HJ, Christoffel KK, et al. Behavioral and emotional problems among preschool children in pediatric primary care: Prevalence and pediatricians' recognition. Pediatrics. 1993;91:649-657. [143]
US Census Bureau, Children and the Households They Live In, Census 2000, page 8 (Table 3, “Characteristics of Children Under 18 by Relationship to Householder: 2000.” All figures are for children ages 5 to 17 years. [218]
American Academy Of Pediatrics. Committee on Children With Disabilities Developmental Surveillance and Screening of Infants and Young Children Pediatrics. 2001;108:192-196. http://www.aap.org/policy/re0062.html [208]
Glascoe, F.P. (2000). Early detection of developmental and behavioral problems. Pediatrics in Review, 21, 272-280. [154]
Shonkoff, J. P., D. Phillips, et al. (2000). From neurons to neighborhoods : the science of early child development. Washington, D.C., National Academy Press. [189]
Boyle, Coleen A., Decoufle, P., and Yeargin-Allsopp, M. Prevalence and Health Impact of Developmental Disabilities in US Children. Pediatrics. 1994: 94(3):399-402. [215]