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Am J Public Health. 2005 November; 95(11): 1928–1932.
PMCID: PMC1449461

Developmental Stages of Developmental Screening: Steps to Implementation of a Successful Program

Abstract

Through the use of 2-stage screening strategies, research studies have shown that autism spectrum disorders and other developmental disabilities can now be detected reliably and with greater validity and in children as young as 18 months of age. Screening and diagnostic practices in the medical and educational arena lag far behind clinical research, however, with the average patient age at time of diagnosis being 3 to 6 years.

We discuss the challenges of instituting universal developmental screening as part of pediatric care and present 2 models of existing or planned programs of early screening for autism spectrum disorder and developmental disability (1 in a community-based setting and 1 in a pediatric setting), and discuss the pros and cons of the different strategies.

JUST AS CHILDREN DEVELOP and mature over time, improvements in health care practices also develop. One area ready for cultivation is developmental screening. Excellent, well-vetted, low-cost screening instruments exist. However, few pediatricians use them, although the high payoff from effective early intervention is now well known.

We reviewed the importance of early developmental screening to identify very young children with developmental delays, disabilities, and behavioral, social-emotional, and learning problems. Autism and autism spectrum disorders (ASDs) are highlighted in large part because there is now clear evidence that effective, early intervention can improve the lives of these children. We next summarized the standards of care and practice parameters for developmental screening. Statements by medical associations consistently recommend that all children, not just those with suspected problems, should be screened periodically with a high-quality developmental screening tool.

With this background of compelling evidence, we have shown the barriers preventing implementation of universal screening from the perspective of the pediatric provider and effective steps to overcome these barriers. Examples of implementation strategies from 2 very different sites, 1 in a community setting and 1 in a pediatric setting, are provided, which are at various stages of implementing developmental screening.

The first, was a community-based program that was appended to a Women Infants and Children (WIC) program in Los Angeles County. This unique partnership among the school system, WIC Centers, and Cedars Sinai Medical Center was initiated to reach more children, train staff, and add a research component to document the effectiveness of developmental screening in a community setting. The second program was a more mature and still-evolving statewide effort in North Carolina. With an Assuring Better Child Health and Development (ABCD) grant from the Commonwealth Fund, developmental screening and surveillance was introduced as a quality improvement initiative, engaging key policymakers from the outset. The following results are impressive: the percentage of children aged 0–24 months who had a developmental screen increased from 15.3% in 2000 to 75% in 2004.

IMPORTANCE OF EARLY DEVELOPMENTAL SCREENING

Identifying developmental problems and disabilities, including autism, in children as early as possible and providing effective interventions is a public health imperative. As described by the National Academy of Sciences in From Neurons to Neighborhoods, “Compensating for missed opportunities, such as the failure to detect early difficulties or the lack of exposure to environments rich in language, often requires extensive intervention, if not heroic efforts, later in life.”1(p384)

Studies have shown that intervention prior to kindergarten has huge academic, social, and economic benefits, including savings to society of $30 000 to $100 000 per child.1 Although substantial, the money saved is not the only measure of value—especially to the 1-in-25 households with a disabled preschool-aged student.2 Late identification of children with developmental delays and disabilities forces states, schools, and taxpayers to pay for expensive special education programs for problems that could have been resolved, or at least treated more effectively and at a cheaper cost, during the preschool years. At least 5% to 8% of children under the age of 5 years have some sort of disability or chronic condition such as autism, cerebral palsy, diabetes, epilepsy, mental retardation, or orthopedic problems. The American Academy of Pediatrics cites much higher figures, stating that 12% to 16% of children have developmental or behavioral disorders.3

Nationwide, more than 5% of children aged 3 to 5 years are enrolled in special education programs.4 The number of children with autism, for which early intervention is essential, is rapidly rising. A 2003 editorial in the Journal of the American Medical Association stated that, nationwide, 1 in 170 children is affected by an autism spectrum disorder.5 The number of people with autism in California’s Developmental Services System doubled between 1998 and 2002.6

STANDARDS OF CARE FOR DEVELOPMENTAL SCREENING

The first critical step to diagnosing and providing help for children with autism, developmental delays, learning problems, or other disabilities is for health care providers and early education providers to perform high-quality first-level developmental screenings on all children, not just those with suspected problems. The quality of screening instruments has improved dramatically in recent years, reflecting studies showing that parental reports of skills and concerns about language, fine-motor, cognitive, and emotional-behavioral development are highly predictive of true problems.7

In addition to being highly accurate, parental-report tools have several advantages: they are relatively inexpensive, and the process of examination is relatively brief, from 2 to 15 minutes. Most parents can fill out the forms on their own, and office staff can read or translate the items for parents who have low-literacy levels or language barriers. As parents answer the questions, they learn about development and become active partners in evaluating and helping their children.

Pediatricians now have readily available standardized developmental screening tools that are practical and easy to use in the office setting. Successful early identification of developmental disabilities (DDs) requires the pediatrician to understand screening techniques, actively seek parental concerns about development, and create links with available resources in the community.

Universal first-level developmental screening with a high-quality instrument is especially important for children with conditions such as autism. While studies of ASD provide evidence of a strong genetic component, currently there is no medical test that can unequivocally diagnose ASD.8 At the same time, almost all autistic children will be flagged for referral by even the simplest high-quality parental-observation screening tool. If the physician or the parents wait until there is sufficient concern to request a screen for ASD or another specific disability, identification and intervention will surely be delayed by months, perhaps even years.

This protocol is one of many that have been proposed by various pediatric organizations for either general or condition-specific developmental screening. There is considerable evidence, however, that few medical practices follow these protocols.915 As described in the next section, there are indeed barriers impeding implementation of universal developmental screening, yet there are also successful and promising strategies for overcoming these barriers.

BARRIERS TO IMPLEMENTING SCREENING

Traditionally, the pediatric provider performs developmental screening and surveillance, because this is often the only routine, formalized, and longitudinal contact a child has with a health care professional in his or her first few years of life. Despite this acknowledged responsibility, as well as research documenting that valid and well-standardized tools exist for the screening and diagnosis of DD and ASD, most physicians, in practice, do not routinely do high-quality developmental screenings. In fact, approximately one-fifth of providers use formalized screening instruments, thereby frequently under-detecting significant developmental delays.16,17 The majority of providers are committed to delivering high-quality care to their patients.18 However, multiple systemic problems contribute to poor compliance and detection.

First, the lack of provider training in development starts long before medical school. Most students that enter medical school have backgrounds in the sciences, with minimal training in education, child development, or psychology. In medical school, the curriculum on child development is variable, and during a 3-year pediatric residency, the minimal requirement for formal behavior and development training is 1 month.19 Despite this paucity of training, pediatricians are expected to be the authority on child development and behavior.

Lack of time is often cited as a significant obstacle to formalized screening. Pediatric providers are expected to do more in less time, and items and tasks are simply squeezed out of the schedule. A recent study found that pediatric providers would need to devote at least 2.2 hours a day to meet the requirements of the United States Preventive Services Task Force recommendations.20 Lack of time to perform all necessary tasks, and the subsequent guilt that arises from not performing those tasks, is a frequently cited reason for physician burn-out and dissatisfaction with medical practice.21

Exacerbating this situation is the lack of adequate reimbursement for performing screenings, which is usually included as part of a routine well-child or preventative visit. The cost of administering a screening test is $11 to $82 per screen, not including follow-up consultation and treatment.12 Even if performed as a separate visit, the reimbursement is variable and often minimal. “Pediatric providers, already feeling pressured by short well child visits, are unlikely to integrate additional services without adequate reimbursement.”12(p921)

A more challenging obstacle is the provider’s fears of having a positive screen. After developing a relationship with a family, the discomfort of giving bad news to a parent arises. Conversely, providers may worry that overreferring a false-positive screen will cause unnecessary family distress and anxiety. Many physicians believe, often incorrectly, that follow-up services are not available. Also, few physicians have the background, skills, or time to help families successfully navigate the fragmented and confusing network of services a child might need.

In addition, providers may not see any real or immediate benefit to performing routine developmental screenings. Teaching providers that the performance of a developmental assessment has been linked to more age-appropriate anticipatory guidance, a higher rate of satisfaction with the care, and higher ratings for the interpersonal quality of the provider may encourage them to perform developmental assessments.22

In the following section are 2 instances of implementing developmental screening, each at a different stage in the process of development, and each in a different venue.

DEVELOPMENTAL SCREENING IN A COMMUNITY-BASED SETTING

In 2002, the Los Angeles County Office of Education (LACOE), the nation’s largest regional education agency serving 81 separate schools districts, received a federal allocation for the Early Advantage program to maximize the learning experiences of young children in at-risk communities. For the last 2 years, LACOE has partnered with specific supplemental nutrition programs for WIC sites to increase school readiness for children under the age of 5 years. WIC is a federally funded nutrition education, food supplementation, and breastfeeding support program.

By offering the Early Advantage program in WIC waiting rooms, low-income parents and their children have weekly opportunities to learn and practice fundamental skills critical for school success. In addition to early learning activities, the Early Advantage staff provides information on child development, school readiness, literacy, child safety, and parental concerns such as appropriate discipline. In addition, referrals are made for developmental concerns to the Regional Centers, Early Start, Head Start, and preschool special education programs.

Early Advantage is in a unique position to pilot a developmental screening program in a community-based setting, providing parents with knowledge and referrals that can help them work more effectively with their child’s physician. To implement this model, Los Angeles County intends to use a high-quality parent-response developmental screening tool to screen all children at a particular WIC site on specific days each week. Although the ultimate goal is to implement this program in as many WIC sites as possible, the project will begin with a pilot study in two WIC sites, owing to funding and staffing considerations.

Early Advantage staff will train WIC staff in basic child development, provide them with information about relevant community resources, and teach them how to score the developmental screening tool. Before and after completing the screening, parents and children will both have an opportunity to participate in early learning activities.

When a positive screen occurs, a secondary screen, typically, will be performed. In addition, families whose children receive a positive screen will be counseled by an Early Advantage child development professional, a follow-up plan will be created, and case management will be provided to help the family navigate the health care systems to obtain appropriate services.

Implementing a developmental screening program in a WIC setting highlights some interesting similarities to screening in a pediatric setting. For example, both pediatric and WIC sites have a proscribed periodicity for visits depending on the age of the child. Also, both WIC and pediatric community clinics often provide unique opportunities for the colocation of relevant services (e.g., out-stationed Medicaid eligibility workers, literacy programs, and information and referral providers). However, in contrast to many pediatric settings in Los Angeles, WIC has some unique and potentially value-added characteristics that should facilitate a successful developmental screening program.

First, many Early Advantage WIC sites have a very high volume of patients and provide an opportunity for screening many children. In fact, in Los Angeles, 95% of all WIC-eligible individuals are serviced by WIC. Second, WIC is a very trusted institution in Los Angeles. Many WIC offices are staffed by former WIC participants, which places WIC in an esteemed position—it is perceived not only as an entity for the community but also of the community. Additionally, Early Advantage staff developed rapport and trust with the WIC staff and with the WIC participants. Third, in an informal needs assessment, WIC participants often reported asking WIC staff for information and referrals about child development, community resources, and education. Therefore, offering more formal screening on site is responsive to the concerns already raised by many families. Finally, Early Advantage has been in place for 1 to 2 years in the targeted WIC sites. The early learning activities provide a rich and nonthreatening opportunity to observe children and parent–child interactions in a familiar setting. These observations can help Early Advantage staff talk comfortably with parents about their child’s skills and make the most appropriate suggestions and referrals.

Certainly, there are distinct challenges for a community-based developmental screening program at a WIC site. In order to meaningfully add to the discussion of developmental screening, this program should be set up as a research project in order to document the program’s effectiveness. As such, the protection of human subjects must be considered, institutional review board (IRB) approval sought, and an informed consent developed. Because the process of pursuing IRB approval is unfamiliar territory to some community partners, and because the prospect of signing an informed consent for a developmental screening at WIC is foreign to some WIC participants, appropriate education and support will be needed to allay potential concerns in this area.

Confidentiality must also be considered. Sharing data, integrating data systems, and tracking referrals all present important confidentiality challenges. When a referral is generated as a result of a screen, creating and facilitating linkages to the child’s primary care provider (PCP) are essential. Depending on what is discovered upon further assessment, the PCP may be a key player in helping the family access services. As such, alliances with PCPs in the areas proximate to target WIC sites need to be created and nurtured.

Lastly, although the link between good nutrition and healthy child development is clear, developmental screening is not the primary mission of WIC, nor should it be. It is crucial that outside funding, such as the LACOE federal allocation or other monies, cover the added costs of screening, referral, and systems navigation that are created by this partnership.

DEVELOPMENTAL SCREENING IN THE PEDIATRIC SETTING

North Carolina is 1 of 4 states funded by the Commonwealth Fund to develop and implement a program, ABCD, to enhance child development services. This project is characterized by two major components: the introduction and integration of a standardized, validated screening tool, such as the Autism Screening Questionnaire (ASQ) or the parent-response developmental screening tool, at selected well-child visits; and collaboration with local and state agency staff and families to develop this system for identifying and serving children.

Preliminary research indicated that, among children receiving Medicaid, the average rate of routine developmental screening in pediatric primary care was low; only 15.3% of children aged 0–24 months were screened at a well-child visit. Also, the percentage of children eligible for Early Intervention Services was much higher than the percentage actually receiving services.

The investigators in North Carolina developed a “best practices” comprehensive community model for replication, building on North Carolina’s “physician driven,” enhanced primary care case management program, Community Care of North Carolina. Developmental screening and surveillance was introduced as a quality improvement initiative (as were asthma and diabetes protocols).

An important step in the project was the formation of a State Advisory Group, which was comprised of leadership from key agencies that has the capability to make policy changes. In addition, the researchers focused on the pragmatics of office process to ensure successful implementation, including:

  • Assessing current protocols for developmental screening
  • Identifying a physician champion within each practice who would promote the project
  • Selecting a screening tool
  • Mapping the office workflow
  • Identifying existing system supports for children who screen positive for developmental delay or autism
  • Conducting staff orientations

The researcher team then developed low-cost anticipatory guidance and practice materials for families and physicians. The team developed the physician curriculum in conjunction with the North Carolina Pediatric Society, the Academy of Family Physicians, the Family Support Network, the state Early Intervention (EI) Program, and the North Carolina Interagency Coordinating Council. The course is now offered in multiple locations throughout the state, and the curriculum is structured to encourage networking between physicians and nurse practitioners and local providers of EI, family support, and therapeutic services.

Between August 2000 and August 2004, the program expanded from one county with six pilot sites to 10 counties with more than 150 physicians. Overall, more than 16 000 developmental screens have been completed. As a result of this initiative, the overall rate of developmental screening among children in North Carolina rose to 75% in 2004 and is even higher among participating practices at the designated well visits.

From the outset, the ABCD project aligned goals with the EI Program. For several years, members of the North Carolina Early Intervention Program (Part C of Individuals with Disabilities Education Act [IDEA]) have been working to discover ways to facilitate the earlier identification of children for the Infant-Toddler Program. In particular, the state Interagency Coordinating Council has had an active committee directed at outreach to physicians. One goal of the EI Program is to increase the referral rate to at least 5% statewide. In the last several years, the percentage of referrals from physicians has increased, and the average age at referral has gone down. In the communities in the project in which the referral increase has been measured, service availability has not diminished. However, after all practices in the state have implemented screening and surveillance as of July 2005, it is expected that some smaller communities in particular will experience difficulty with capacity. This will clearly illustrate need and will support enhancement of funding and services.

In addition, the referral rate to the Early Intervention Program has increased from 2.6% to 7–8 %. The research team has documented improved early identification. As part of the program evaluation, follow-up diagnostic work-up and services received were assessed for a sample of children who screened positive for developmental concerns. Seventy-five percent of those children who received a subsequent diagnosis of autism had been referred for services by the age of 2 years.

Perhaps the most significant change is that of North Carolina’s Medicaid policy regarding developmental screening and surveillance. Since July 1, 2004, Medicaid has required that all medical practices implement regular developmental screening using a formal, standardized developmental screening tool. Starting in July 2005, this requirement was linked to payment. The schedule endorsed by North Carolina Pediatric Society includes screening at 6, 12, 18, and 24 months of age and 3, 4, and 5 years of age and mandates that medical records contain developmental test results.

Data have been collected via periodic surveys to understand the response of parents and providers to this new initiative. Two parent phone surveys have been performed to collect qualitative data for improvement purposes. The first phone survey was done in 2001 using a random sample of 250 persons; 58 parents completed the survey. In 2002, 129 respondents of a random sample of 250 persons completed surveys. Parents reported that they found the developmental information provided helpful in raising their children, and they wanted to receive such information from their provider. Discipline and nutrition were the most often listed topics of interest. The parents reported reading the developmental and behavioral materials given to them by the staff.

Two provider surveys were conducted: the first with the pilot practices and the second covering two counties and including 71 providers. The respondents agreed that the ASQ was an effective tool and would recommend it to other providers. They reported using the completed questionnaire as a guide for discussing development with parents and that, for the tool to be used properly, attention must be given to office flow—when and where the questionnaire is given to parents. Finally, they reported that parents appreciated the time spent discussing their child’s development.

CONCLUSION

The science of developmental screening has dramatically matured over the past 15 years. It is now possible to do high-quality and low-cost developmental screenings in community-based settings as well as in health clinics and medical practices. However, current practice lags far behind the research. Integration of routine developmental screening into pediatric primary care is still an unrealized goal. Improving current practice requires understanding this research and then having the will and wisdom to implement effective changes. The compelling rationale for change is clear: promising and effective approaches are available to ensure that all young children receive high-quality, first-level screening.

Acknowledgments

This work was supported by the Centers for Disease Control and Prevention (grant UC10-CCU320394) and the Commonwealth Fund.

We acknowledge Margaret Souders, Nancy Wiseman, and Rebecca Landa of the National Center for Birth Defects and Developmental Disabilities Symposium on Improving the Identification of Children with Developmental Disabilities and Autism Spectrum Disorders.

Human Participation Protection
Appropriate approval was obtained from all participating institutions, including the University of Pennsylvania, the Children’s Hospital of Philadelphia, the Guilford Child Health Clinic, the Cedar Sinai Medical Center, and the Children’s Clinic.

Notes

Peer Reviewed

Contributors
J. Pinto-Martin originated the idea for the symposium on early identification of developmental disabilities and autism spectrum disorders (presented at the National Center for Birth Defects and Developmental Disabilities conference in Washington, DC, July 26–28, 2004). M. Dunkle identified additional participants for the symposium through her work on early identification of developmental disabilities and autism spectrum disorders, including M. Earls from the Guilford Child Health Center in North Carolina, D. Fliedner from the Children’s Clinic in Los Angeles, Calif, and C. Landes from Cedar Sinai Medical Center in Los Angeles, Calif. All authors participated in the writing and revising of the article.

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