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Improving the Lives of Young Children:

Opportunities for Care Coordination and Case Management for Children Receiving Services for Developmental Delay

Carrie Hanlon
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Document date: December 30, 2010
Released online: January 24, 2011

Abstract

Services that support healthy development in the years before starting school can reduce the incidence of disorders that have high costs and long-term consequences for children's health, education, and well-being. State policy choices can affect the extent to which Medicaid- and CHIP-eligible children receive developmental screenings and follow-up treatment. Unfortunately, access to follow-up care, such as Early Intervention services, continues to be a challenge. This brief examines states' Medicaid and CHIP policy choices that will be available under health reform and other federal legislation to develop a well-coordinated system of care for children receiving early intervention and other ongoing services.

The text below is an excerpt from the complete document. Read the entire report in PDF format.


Executive Summary

Services that support healthy development in the years before starting school can reduce the incidence of disorders that have high costs and long-term consequences for children's health, education, and well-being. As previous briefs in this series have demonstrated, state policy choices can affect the extent to which Medicaid- and CHIP-eligible children receive developmental screenings and necessary assessment and follow-up treatment. Unfortunately, access to follow-up or referral services continues to be a challenge even with appropriate referral. Often, significant time passes from when a problem is identified to when the child receives appropriate follow-up care, such as Early Intervention services, which are federally defined support, education, and related services to meet the developmental needs of eligible young children (birth to age two) with disabilities and their families.

This brief examines states' Medicaid and State Children's Health Insurance Program (CHIP) policy choices and new opportunities that will soon be available under health reform and other federal legislation to develop a well-coordinated system of care for children receiving early intervention and other ongoing services. It then outlines how early childhood and early intervention providers could potentially support the development of effective care coordination and case management policies. Three other briefs in this series discuss other important components of effective services for children at risk of developmental delays: improving screening, improving referral and follow-up care, and addressing parents' health needs.

Children with developmental delays living in low-income settings or households often interact with multiple programs and sectors, including medical (e.g., Medicaid or CHIP, primary care/pediatrician practices), early intervention, and early childhood programs such as Head Start and child care. This document uses "care coordination/case management" to refer to activities that help connect children and families to the services they need, improve communication between families and providers, and do so efficiently. These activities are particularly important for young children with or at risk of developmental delays because timely linkages to needed services can mean the difference between healthy development and lifelong health challenges. However, primary care providers do not necessarily have established relationships with service providers or sufficient knowledge of the available resources in the child's community to ensure that these linkages occur.

A person who stays with a family through this process can provide the support families and providers need to make vital connections to community supports more seamlessly and less stressfully. In a well-coordinated system of care for children, primary care providers (PCPs) would receive confirmation that referrals were completed, along with pertinent information such as results of any follow-up tests and lab work and related follow-up services. PCPs would also receive comparable information about patients who receive developmental screening or a referral to early intervention services through other channels (e.g., Head Start). Early childhood providers would know about (or have a resource to find out about) available support services in the community and link families to them. In such a system, children and families would receive timely and appropriate care, including early intervention and support services.

Medicaid and CHIP Rules Provide Platforms for Care Coordination and Case Management
Medicaid and CHIP together provide health care coverage to half of low-income children and therefore are in a prime position to promote improvement. For children under age 21, federal Early and Periodic Screening, Diagnosis and Treatment (EPSDT) requirements establish a set of covered services and a medical necessity definition that are common for all state Medicaid programs. Medicaid can pay for care coordination/case management services in several ways:

  1. Directly through case management aspects of EPSDT. For example, EPSDT includes services such as informing eligible families about EPSDT, providing or arranging for screening services, and arranging for assessment and follow-up.
  2. Directly through targeted case management (TCM). TCM is an optional service that provides assistance to help a specific, defined group of Medicaid beneficiaries access care, most commonly groups of beneficiaries with complex care needs.
  3. Through primary care case management (PCCM). PCCM is a type of managed care that states can implement for adults or children. It means that a participating primary care provider (such as a pediatrician's office) agrees to deliver primary care services, manage access to specialty services, and coordinate care. In return, the provider receives a monthly fee beyond the payments for specific services.

States can also support effective care coordination through performance improvement activities (e.g., external quality review) and the use of information systems. States with separate CHIP programs may adopt similar policies if they so choose. These Medicaid and CHIP rules create platforms for care coordination and case management by giving states the opportunity to

  • enhance the ability of primary care practices to coordinate care;
  • provide case management staff who are not affiliated with a primary care practice;
  • provide tools and resources to support communication among families and medical, early care and education, and early intervention providers;
  • assess the effectiveness of care coordination/case management services to identify ways to better target resources and improve systems of care;
  • and use health information technology to ensure that primary care providers are aware of all services a child is receiving.

Variation in States' Use of Federal Policy Platforms for Care Coordination and Case Management
Many states are already using the above mechanisms to support care coordination and case management. In Oklahoma, Medicaid and CHIP programs require primary care practices to provide care coordination and case management services in order to be recognized as a medical home in the state; recognition as a medical home in turn allows practices to qualify for incentive payments. In North Carolina, payments are made by Medicaid to community-based networks that support medical home practices with services (such as care coordination) that a single practice could not afford alone. Through contracts between the state and such local entities as county public health agencies, states like Colorado, Iowa, and Arkansas have dedicated staff in communities assisting primary care providers and linking families to the resources they need. In addition, states like Connecticut and Illinois have promoted data sharing across agencies and programs that serve young children, while Oregon is linking these efforts to broader statewide health information technology or exchange activities to promote the use of electronic health records for children and help measure care coordination/case management.

Challenges Exist, Yet So Do New Federal Opportunities
Key challenges that have arisen in implementing care coordination and case management for low-income children with developmental delays include program and system fragmentation, limited provider and service capacity, and inadequate funding. The sectors involved in promoting children's healthy development were developed separately and typically operate autonomously. For this reason, they are often unfamiliar with one another and have different funding streams, data systems, cultures, definitions, and protocols. Additionally, in many places, primary care providers lack sufficient resources to provide care coordination and case management, and the number of providers delivering children's developmental services is limited. Finally, care coordination/case management has historically been underfunded, and states may be hesitant to reimburse these services given that certain case management services have been challenged by the federal government.

Fortunately, recent federal stimulus funding, CHIP reauthorization, and health care reform offer new opportunities for states to make policy choices that promote care coordination and case management and learn from other states' experiences implementing these policies. As part of the 2009 legislation reauthorizing CHIP, the federal government awarded grants to states to improve child health quality by evaluating care coordination models. The American Recovery and Reinvestment Act of 2009 contains unprecedented funding and capacity-building for health information technology and exchange, and the Patient Protection and Affordable Care Act of 2010 provides several opportunities to support pediatric care coordination and case management, particularly via the medical home.

Early Care and Education Providers Can Play Key Roles
Within the aforementioned platforms in Medicaid and CHIP as well as new federal opportunities, early care and education providers can promote greater care coordination and case management. State experience (and research) working through these providers is limited, but early care and education providers are important partners for states to consider, given their frequent interactions with and knowledge of low-income children receiving early intervention and other developmental services. Potential roles for early care and education providers include serving as Medicaid or CHIP-funded care coordinators, interacting with existing care coordinators, informing or advising Medicaid/CHIP-funded care coordination/case management activities, and engaging families.

While ensuring that children with developmental delays complete referrals and access appropriate and timely follow-up services continues to be a challenge, current and future opportunities in Medicaid and CHIP can support greater care coordination and case management. In addition, states can potentially implement these opportunities in ways that bring together early childhood and health providers to take advantage of each partner's unique strengths. States have already begun to implement these opportunities for care coordination and case management, yet further refinement and testing of alternative service delivery and payment methods at the state level is critical. Such experimentation will enhance researchers' knowledge of appropriate care coordination/case management measures and generate data on the effectiveness of these strategies.

End of excerpt. The entire report is available in PDF format.



Topics/Tags: | Children and Youth | Health/Healthcare


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