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Breakout Session Discussion Summary: Services for CSHCN and their families will be organized in ways that families can use them easily in managed care settings.

Renee Schwalberg, Health Systems Reserch, Inc. - Group Facilitator

1. Contributions of Grantees

• The group discussed efforts to develop systems of care that are organized in ways that families can use them easily. These efforts included strategies for coordination of care at both the client level (through individual-level care coordination) and the system level (through interdisciplinary and interagency coordination), and the group agreed that ongoing efforts at both levels are necessary to assure that care is provided in a coordinated fashion. Examples of client-level coordination included:

• Advocare. This behaviorial health organization in Tennessee has begun to hold care coordination meetings with families, schools, government agencies, and care coordinators present. The participating organizations share in the financing of these meetings, and they allow for all of the organizations to communicate and coordinate with families simultaneously.

• Boston Medical Center (Mass General). Their program has teams working with predominantly low-income families to address social and educational services. These community care coordinators often address such practical issues as helping families to get food stamps, find housing, and address problems in school, problems that medical providers do not have the time or expertise to address. In general, the concerns of providers in high-risk communities include the need for help with social problems; the ability to recognize acute mental health problems and refer parents and children to appropriate services; access to preventive menal and physical health services; and addressing problems associated with chronic illnesses.

On the systems level, the efforts of the grantees included:

• ABC for Health. This project has instituted monthly meetings through which providers and administrators can share information and address problems within the managed care organization=s network. These meetings have allowed participants to address a range of administrative issues and to coordinate the financing of services.

• University of Texas, San Antonio. This project=s coalition on care coordination issues has conducted a needs assessment of case managers, who are employed under private contracts with the State of Texas through the state=s Medicaid managed care program. The privatization of case management services has resulted in a vast array of disciplines with licensure to be case managers, including nurses and social workers. The project=s needs assessment showed that a need for education for case managers so as to provide a common set of skills and knowledge across disciplines and programs; this led to the development of a 10-month educational program for case managers, which is evaluated by the University of Texas through surveys before and after the program.

2. Challenges

The grantees noted a number of specific challenges associated with the development of organized, comprehensive systems of care for children. These included the following:

• Carve-outs of mental health services are a major barrier to coordination of services. Physical and behavioral health care must be coordinated for systems to be coordinated.

• In many cases, financing systems present a barrier to coordination of services. For example, managed care networks may not include all providers in an institution, so primary care providers may not be able to refer children to psychiatric services within the hospital. Conversely, because different payers have different provider networks, children who receive services through both the medical and educational systems may have to go to different providers for the same therapies.

• Effective care coordination depends on the ability to gather and share information. However, actually obtaining service data from managed care plans can be a challenge, as CSHCN represent a small proportion of their total enrollee population and these data requests may not receive high priority from plans= MIS departments.

• Finally, the diversity of benefit packages offered by the various plans and payers can be confusing and frustrating to care coordinators, who may not always understand exactly what is covered for their clients.

3. Lessons Learned

The group offered a number of suggestions for overcoming these challenges, including the following:

• To help to assure the commitment of managed care organizations to the care coordination project, it is helpful to have a signed letter from someone with authority within the plan committing the plan to the project for a defined amount of time. The project also requires the commitment of a dedicated staff person, but having the name of someone in authority in writing supporting the project can be essential to assuring the continued commitment of resources even as the ownership of a plan changes. In advocating for the importance of care coordination within a plan, the assistance of the plan=s medical director can be critical as well.

• To assure continued access to data, it can be helpful to tie care coordination programs to quality assurance efforts. Plans are required to conduct quality review studies every year, and analysis of access to care for CSHCN could provide one of these studies.

• On the state level, having a champion within the state legislature can help to assure continued funding for and attention to a care coordination program.

• To address the challenge of maintaining commitment from diverse partners, grantees recommended frequent communication and the provision of meaningful data describing the results of the project.

Finally, the grantees agreed that the sustainability of care coordination efforts depends on the projects' ability to demonstrate the success of their programs in terms that are meaningful to providers, payers, and families. While one grantee has been able to show cost savings due to care coordination, this is often a critical challenge and an area for future research.

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