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North Carolina Is Assuring Better Child Health and Development

The States in Action quarterly newsletter identifies and describes innovative state health-related programs across the country. It is intended to help policymakers, administrators, and researchers as they work to stretch health care dollars and meet the needs of their residents.

States in Action is part of a new Commonwealth Fund initiative on state innovations. The initiative aims to increase understanding about state health system performance, identify and measure the effects of policies intended to improve performance, and spread information about promising practices. For more information about the program, send an e-mail to [email protected].

We also welcome those involved in state efforts to expand coverage and improve care and efficiency to send an e-mail about their efforts to our state innovations address.

Profiles: In-Depth Looks at Initiatives that Are Making a Difference

North Carolina Is Assuring Better Child Health and Development

Summary: North Carolina's Assuring Better Child Health and Development (ABCD) program aims to improve identification of potential developmental disorders in children and engage families and community stakeholders in the process. It utilizes an inexpensive, validated, and easily administered screening tool, provides opportunities for interactions with and education of family members, and involves a variety of community members. The program has had several positive outcomes. In areas using ABCD, the referral rate for early intervention services is at least double the statewide average and the screening rate has increased from less than 20% to more than 85%. In July 2004, the success of the ABCD program led to a change in state Medicaid policy. Providers are now required to screen children for developmental disorders at specific time periods with a standardized screening tool, following the ABCD model.

The Issue
Nationally, approximately 16% of all children have some form of disability, including speech and language delays, mental retardation, learning disabilities, and emotional/behavioral problems. The numbers are even higher for low-income children. Taking into account psychosocial problems, between 20% and 25% of all U.S. children may have a developmental or behavioral disorder. In pediatrics, this has been called the "new morbidity."[1]

Only 30% of these cases are detected prior to school entrance, meaning that there are many missed opportunities to intervene early to address problems.[2] The federal government requires that states establish early intervention programs, and research shows that children who participate in such programs prior to kindergarten are more likely to graduate from high school, hold jobs, and live independently, and to avoid teen pregnancy, delinquency, and violent crime.[3] The savings for these outcomes are substantial, ranging from $30,000 to $100,000 per child. According to one study, for every $1 spent on early intervention, society saves up to $7 through avoided teen pregnancy, delinquency, violent crime, and social services.[4]

Like other states, North Carolina faces the challenge of serving an increasing number of children in Medicaid and the State Children's Health Insurance Program (CHIP). The state also has had a large increase in referrals to their early intervention system.[5] In the fall of 2000, North Carolina was one of four states to be awarded a grant from The Commonwealth Fund's Assuring Better Child Health and Development (ABCD) initiative, which seeks to build the capacity of state Medicaid programs to provide child development services.

The ABCD project began as a pilot initiative at three pediatric practices in Guilford Child Health, Inc. (GCH), one of Medicaid's Community Care networks in Guilford County. After six months, it had expanded to three more practices in the network. After a year, it had spread to more than six practices in two new counties, Gaston and Forsyth. In the following year, the ABCD project was in an additional seven counties and more than 100 practices. Now, the program is statewide for all Medicaid primary care physicians who provide Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) services to children.

Process of Change
North Carolina's Medicaid Agency turned over leadership of the ABCD project to the Office of Rural Health in partnership with GCH, which took a two-pronged approach to improve child development services:
  1. Developing a "best practices" comprehensive community model for screening, surveillance, and referral in well-child care that could be replicated. This physician-driven community model is characterized by two major components:
    • Introduction and integration of a standardized developmental screening tool at selected well-child visits; and
    • Collaboration with local and state agency staff and families in developing this system for identifying and serving children.
    • Forming a state advisory group comprising leaders from key agencies who have the capability of making policy changes.Participating physicians chose the Ages and Stages Questionnaire (ASQ), a validated parent survey of child development. The questionnaire is written at a fourth- to sixth-grade reading level. It is inexpensive, with a one-time cost of $199 for a kit. After purchasing the kit, practices can make unlimited copies of the questionnaire.

      The ASQ helps detect potential problems in five developmental areas: communication, gross motor, fine motor, problem solving, and personal/social. It consists of 30 questions and can be offered up to 19 times to parents of children between four and 60 months. In the ABCD pilot project, providers chose to offer the ASQ at six key stages of development: six, 12, 24, 36, 48, and 60 months. The questionnaire takes about five to 10 minutes for parents to complete and two to three minutes for a doctor or nurse to score. After scoring the ASQ, providers discuss the results with parents and, if necessary, arrange referrals for full evaluations. Such evaluations are performed by a Children's Developmental Services Agency or Preschool Program, depending on the age of the child.

      Prior to ABCD, the average developmental screening rate for children across Medicaid systems in North Carolina was approximately 15.3%. This low rate was partially attributable to the fact that the most common screening was untenable: it took too much time to administer and relied on assessments made in doctors' offices rather than parents' observations. After the new screening tool was adopted, screening rates soared to more than 70% within the model practices by 2002. As of March 2005, the screening rate was up to 85%.[6]

      In addition to raising screening rates, North Carolina wanted to improve relationships between providers and parents. The ABCD program creates opportunities for clinicians to involve parents in a dialogue about their children's health and development, even when children do not receive an "at risk" score on the ASQ. According to Marian Earls, M.D., medical director at Guilford Child Health, Inc., parent-completed questionnaires such as the ASQ are "more family-centered, engage parents as partners in care, and are more reflective of the child's true skills." Sherry Hay, ABCD project coordinator, adds that "instituting a system for developmental screening and surveillance into primary care not only helps in making the care more family-centered but can also make the well-child visit more time efficient."

      The model also helps to forge relationships between providers and community partners. These relationships are facilitated by community care coordinators within Medicaid networks. The coordinators—usually social workers or nurses—oversee the program at its various sites, provide support to families, and help with referrals. In some areas, such as Guilford County, the coordinator is also certified as an early intervention specialist (EIS). As the program has expanded, networks have been creative in developing the care coordinator role. A few networks have an EIS, others use their own care coordinators, and some counties have other early childhood community agency staff members who provide support to practices.

      The ABCD model has been disseminated in several ways. In some cases, Community Care Medicaid networks directly adopted the initiative after the success of the ABCD pilot. The model has also spread through physician practice trainings endorsed by the state chapters of the American Academy of Family Physicians and the American Academy of Pediatrics. Seven trainings were held in 2002 and five to six in 2004. Physicians receive continuing medical education credits for attending. In addition, program administrators have distributed educational materials to parents and a DVD to practices that explains the rationale for screening and surveillance, how to integrate the activity into office flow and billing, and how to collect process and referral (performance) data. And in 2004, North Carolina mandated that all practices that serve Medicaid-enrolled children use a standardized screening tool.

      Since 2000, North Carolina's ABCD program has had success:

        In July 2004, the success of the ABCD program prompted a change in state Medicaid policy. Medicaid providers are now required to use a standardized screening tool, such as the ASQ, that meets specific sensitivity and specificity levels at the six, 12, 18 (or 24), 36, 48, and 60 month well-child visits.[9] In addition, providers must now list a specific code on their Medicaid claim form to indicate that these services have been rendered.

        Lessons and Next Steps
        According to Hay, implementation of the new state policy is going well because "the groundwork was done early, and the change is physician-driven. It makes a big difference to have physicians who have implemented [the ABCD practice] providing support, as opposed to the policy coming down from the state. It is not a punitive approach, but an educational approach."

        Earls believes the approach can work for populations outside of Medicaid and CHIP. "Once physicians begin this in their practices, they do it with all their patients; it's easier to do that than to have a separate flow," she says. "Also, physicians are aware of the recommendations from the American Academy of Pediatrics and know this should be available to all children." She adds that involving parents is crucial; physicians must "respect and react to what parents have to say because they are often the first to spot problems."

        [1]Saxe, J. "Assessing and Addressing Development: A 21st Century Frontier." NC Family Physician, Spring 2005. [2] Glascoe FP, Shapiro HL. "Introduction to Developmental and Behavioral Screening." May 27, 2004 (revised August 10, 2005). Available online: [3]The states are mandated under Public Law 99-457, also known as the Individuals with Disabilities Education Act, Part C. This law amended Public Law 94-142 by offering services to three- and four-year-old children as well as creating an entitlement program of services to eligible infants, toddlers, and their families. [4] Glascoe, 2004. [5] According to data from the State Early Intervention Program, physician referrals into the early intervention system increased 17% over the previous year in North Carolina. [6]From Medicaid claims data. It is suspected that the screening rate may be even higher, since the data are manually entered and human error is likely to be a factor. [7]Statewide referral data that reflect the new state policy are not yet available. [8]The ABCD workgroup, lead by Earls, Hay, and others, did provider surveys in 2001, 2002, and 2003. An expanded evaluation in 2004 looked at ABCD and non-ABCD providers. [9]The Denver Developmental Assessment, which had previously been recommended by the North Carolina Division of Public Health, was not included on the new list of standardized tools. The ASQ, as well as other screening tools such as Parents' Evaluation of Developmental Status (PEDS), are on the list.

        For More Information: See ABCD: Lessons from a Four-State Consortium, Helen Pelletier and Melinda Abrams, The Commonwealth Fund, December 2003
        Contact: Sherry Hay, ABCD Project Coordinator, [email protected]

        Marian Earls, M.D., Medical Director, Guilford Child Health, Inc., [email protected]

      • The screening rate has increased from less than 20% to more than 85% in areas using ABCD.
      • The referral rate (for early intervention services) is 7% among practices that initially adopted the ABCD model, compared with 2.9% statewide.[7]
      • Many families receive counseling from the care coordinator even though their children's ASQ scores do not identify any risks. Care coordinators may help with referrals to Head Start, assist with identifying quality child care, or provide counseling regarding typical development.
      • In a referral cohort followed in the evaluation process, 94.5% of all children screened and referred completed their referrals by having appointments arranged. Among those referred, 55.3% began early intervention services.
      • Surveys have found widespread support for ABCD among health care providers; a 2003 survey found that 77% of providers recommended the ASQ, 74.3% thought parents were good reporters on the questionnaire, and 71% used the tool as a guide when talking to parents. Also, parents told providers that they appreciated the tool as a guide for developmental milestones for their children.[8]

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