Beyond Referral: Pediatric Care Linkages to Improve Developmental Health

Executive Summary

Introduction
A growing body of evidence highlights the importance of early development, and points to the need for both actively promoting healthy development and systematically addressing developmental, behavioral, and psychosocial issues early in life. However, many children with or at risk of developmental issues are not being identified early enough, and are not consistently linked to the services and supports they need Pediatric health care providers have an important role to play in providing developmental care and linking children to needed services and resources within the broader community. While multiple strategies are being tested by pediatricians and others working in child health, to date there has been no study with a primary focus on how pediatric practices link young children and their families to developmental services and supports. This report provides a first step in reviewing the current state of the art on pediatric linkages for developmental care. More specifically, the report:

• describes the context in which pediatric developmental care and linkage takes place;
• provides working definitions and a typology for describing linkage strategies;
• identifies and discusses key linkage strategies used by exemplary practices; and programs.
• provides recommendations and next steps for improved linkage.

Defining Linkage: A Closer Look
As used in this report, linkage is defined as: connecting the child to needed services and supports while also staying connected to the child. More specifically, linkage indicates the act of connecting the child and family to needed developmental services and supports, whether within the practice setting or beyond.

Linkage Typology
A major problem in studying linkages for developmental care is that there is not yet a common language or typology for describing linkage strategies. As a result, it is difficult to systematically identify, assess, and advance these efforts.

This report provides an initial typology of linkage strategies for pediatric developmental care. The typology organizes linkage strategies into three broad categories:

• Level I, or practice-wide systems change strategies;
• Level II, or service provider partnership strategies; and
• Level III, or community-wide systems change strategies.

For each level, key strategies are listed that are common across practices and programs. In total, the typology delineates nine key strategies.

Key Findings
Key findings from the study review of innovative linkage strategies are as follows:

Level I—Practice-Wide Systems Change Strategies


• Within the field of pediatrics, efforts to improve developmental care tend to take the form of in-house practice change, which is often implemented as part of a quality-improvement/systems change process.
• Routine surveillance, screening, and anticipatory guidance; and a referral/linkage point person and follow-up system are prerequisite for good linkage to services both within the practice and in the community.
• Adding new, in-house staffing and services eases the transition to new services for children and families, and keeps primary care in the loop. But this approach has limitations: at some point for some children and families, needs will exceed practice capacity (for example, when the intensity of the need requires daily, one-on-one interventions). In addition, an exclusive in-house focus cannot optimize the use of practice or community resources.
• Practice-wide systems change strategies can improve the quality of primary care.

Level II—Service Provider Partnership Strategies


• The three service provider partnership strategies—co-location, co-management, and networking/information sharing—help use existing resources more effectively and improve the quality of care by: reducing barriers to care; promoting early referral, linkage, and follow-up; promoting cross-discipline problem-solving and family-centered care; and reducing duplication and fragmentation of services.
• Service provider networking and information sharing can help uncover gaps in services and can also set the stage for collaborative efforts to address gaps (e.g., coalitions to change policies and programs).
• Initiating and maintaining regular, multi-sector or multi-agency service provider networking sessions generally exceeds the capacity of individual pediatric practices, requiring commitment and funding from others in the community or beyond.

Level III—Community-Wide Systems Change Strategies


• New community or statewide programs can improve linkage and fill gaps in needed developmental services. Among the most needed services are: mental health care; centralized referral/linkage resources; mid-level assessment services; and intervention services for children at-risk and with mild-to-moderate delays.
• From a community systems perspective, as more mid-level assessment and intervention services become available, more high-end services can be freed up for children with the greatest needs. Thus, the alignment between needs and services can be improved. In addition, over time, increases in mid-level, secondary prevention services can result in fewer children needing more intensive care.
• Among community-wide programs there is a move to reach out to parents, child care workers, and others who touch children's lives on a regular basis. These programs help establish a shared understanding of child development and a shared responsibility for both promoting development and identifying and addressing developmental needs.
• Systemwide training programs for pediatric primary care practices improve developmental care and linkage by: 1) providing information to enhance developmental expertise, 2) introducing a practice-wide systems change approach, and 3) stressing the importance of linking to other community services and systems. Similarly, systemwide training programs for medical residents, nurse practitioners, and other trainees prepare the next generation for improved developmental care and linkage.
• Systemwide policy changes can jump-start and/or sustain individual practice change.
• Reimbursement/financing systems for developmental care and linkage are crucial.

Recommendations
The final section of the report incorporates seven broad recommendations for enhancing developmental care linkages in communities, states, and nationwide. Each recommendation is followed by a short set of more detailed "next steps" for implementation. The recommendations are as follows:

1. Use quality improvement (QI) approaches to achieve developmental care systems change at the practice level.
2. Rethink and reorient the well-child component of pediatric primary care so that pediatric practices can substantially contribute to the promotion of healthy development.
3. Engage professional associations and umbrella agencies in identifying and linking developmental resources in their communities.
4. Promote co-location of public sector services in pediatric practices, as well as other innovative and cost-effective ways to deploy existing public sector resources for developmental care.
5. Promote mid-level developmental assessment and referral/linkage capacity at the community or regional level.
6. Support training for pediatricians and other primary care providers to help them implement practice-based systems change focused on developmental care.
7. Identify and promote key policy changes, including policies that improve financing and sustainability of community systems for developmental care.