PROBLEM: "Children with special health care needs are particularly vulnerable to service fragmentation, financial barriers, and the acute care orientation of the health care system because of the breadth and complexity of their needs from a developmental perspective. The historic lack of coordination between medical, social services, mental health, and educational systems, coupled with a pattern of categorically funding services as opposed to meeting the needs of the whole child, has tended to lock families and their special needs children into a world view characterized by confusion, frustration, and limited opportunities." - 1997 Oregon Health Plan (OHP) Parent Satisfaction Survey. Families of children with special health needs (CSHCN) often need community services such as social, respite, recreational, and educational supports in addition to health care services. These non-medical supports and services have a major impact on the family's and the child's overall health. Because of the lack of communication among the health, education and social service organizations, families commonly need to act as messengers, translators and even as mediators. Frequently, families are ill-equipped to serve their child in these roles and the child's access to needed services is dramatically compromised.
In 1991 the Community Connections Network (CCN) was launched to develop a system of multidisciplinary community based teams plan for the health, education, and social concerns of children with special health care needs 0-21 years old clinics serving rural Oregon. But the 1994 advent of Oregon's Medicaid managed care program had a significant impact on medical care for children with complex chronic illnesses and disabilities. The 1997 Title V Needs Assessment of CSHCN identified major problems: less than 50% of the parents consistently participated in a partnering relationship with their child's health care providers; only 40% consistently received meaningful and complete information about their child's condition; and less than 50% have a consistent trusting relationship with their child's health care providers. Primary care providers often do not understand how non-medical supports fit into their plan of care, leaving families alone to negotiate a maze of fragmented and sometimes unresponsive services. This is especially true when considering private pediatric practices dealing with multiple Managed Care Organizations (MCO5) and always-evolving public resources.
Since the change to managed care, CCN has worked to promote partnerships with MCOs in communities across the state. MCOs are beginning to understand the extra time and resources needed to adequately address the needs of children with chronic health conditions. However, increased awareness has not yet translated into the provider reimbursement for time spent in
providing the enhanced care coordination that characterizes a true Medical Home for children with special health care needs or that is necessary for developing sustainability for CCN.
GOALS AND OBJECTIVES: In this Practice Based Community Connections (PBCC) Pilot Project it is proposed that the activities of CCN be moved into a private practice setting, and that a Medicaid MCO's case manager be included as a member of the team. MCO participation may prove to be the necessary impetus for establishing reimbursement for comprehensive care coordination services.
The PBCC Pilot Project will improve the current structure for solving complex medical issues for children with special health care needs within managed health care systems by exploring innovative partnerships with the child's primary care practice, MCO, parents, state, and community resources. The ways in which this project will accomplish this goal are:
1. Provide a primary care office based practice with an effective team approach for
managing the care of children with complex chronic illnesses and disabilities
2. Improve communication between primary care physicians and families, specialists,
MCOs, and any other health and service providers involved in the child's care
3. Organize community-based services and supports for families (special education
services, respite, parent support, transportation, etc.)
4. Create better systems for identifying CSHCN, evaluating outcomes, and improving
quality within the collaborating MCO.
METHODOLOGY: In the first nine months of this project, an appropriate and willing primary care practice with access to a number of CSHCN who are also members of managed health care organizations will be identified. An office nurse/care manager within the practice, and a case manager within the major Medicaid MCO of the area will also be identified and trained. For the next two years the Project will operate monthly care coordination meetings for patients and their families within the practice; connecting them with the medical/community resources needed to optimize health; collecting utilization, outcome, cost and satisfaction data.
COORDiNATION: As the State CSHCN agency, the CDRC is knowledgeable about the successes and difficulties in implementing this project through the normal reporting procedures already in place for CCN. Activities, successes and difficulties will be included in the annual Title V Block Grant report which is disseminated regionally and nationally.
EVALUATION: Effectiveness of the Practice Based Community Connections Pilot Project will be evaluated both locally and at the program level utilizing outcome and process indicators. Outcome indicators will measure patient/parent/provider satisfaction with access, care coordination and adequacy of information. Process indicators will evaluate the role of the partners, training, marketing, and quality assurance.