NEXT STEPS: The Oregon Spina Bifida Project

Building A Community-Based Health Delivery System
For Children With Special Health Care Needs

FINAL REPORT
October 1, 1993 - September 30, 1997
Mark J. Merkens, M.D.
Principal Investigator
#MCJ-415087

funded by:
Maternal and Child Health Improvement Projects
for Children with Special Care Health Needs
Habilitative Services Priorities

The Spina Bifida Program
Oregon Services for Children with Special Health Care Needs
Child Development and Rehabilitation Center
Oregon Health & Science University
Portland, Oregon

ANNOTATION

NEXT STEPS is a project to develop a system of expanded services in the home communities of the more than fifty children with spina bifida residing in rural areas of Oregon. This model program shifts the focus of the Oregon Spina Bifida Program, and services for children with complex chronic health conditions, into the community where they reside and where most services originate. The underlying philosophy is the recognition of the limits of treatment for chronic health conditions by experts based solely in the tertiary center, as well as the need for enhanced expertise in rural communities. Training is provided to community-based health, education, and social service professionals about the needs of these children and their families. With collaborative linkage to continued service provision at the tertiary center, community-based services better address needs such that outcomes (health status, impact on family, utilization) improve through enhanced referral, coordination, and liaison.

KEY WORDS

spina bifida
children with chronic health conditions
training
liaison
community-based services

Project title: NEXT STEPS: THE OREGON SPINA BIFIDA PROJECT; Building a community-based health delivery system for children with special health care needs.
Project Number: #MCJ-415087
Project Director: Mark J.Merkens, M.D.
Grantee: Child Development and Rehabilitation Center
Oregon Health Sciences University
Address: P.O. Box 574, Portland, OR 97207-0574
Project Period: October 1, 1993-September 31, 1997
Total Grant Award: $560,000

PURPOSE

The NEXT STEPS is a project to develop a system of enhanced services for children with complex health care needs in their home communities at great distance from the tertiary medical center. In Oregon more than 50 children with spina bifida live at least 200 miles from tertiary facilities and the Cascade Mountains are a barrier. Addressing these children's needs solely at the tertiary center leaves gaps in services, and children with other chronic health conditions face similar gaps. Out model extends the focus of management from tertiary centers into the communities where these children and their families reside. Community-based professionals with expanded skills are collaboratively linked to the tertiary center. Addressing the needs of these children in this way improves their medical status and family outcomes.

The NEXT STEPS model strengthened Maternal and Child Health Block Grant programs in Oregon. It could be easily replicated in other rural Western states or in other population centers that are distant from needed specialized services. The model might also successfully replicated by subcontracting liaison and training with MCH funding in states where Services for Children with Special Health Care Needs (SCSHCN services) are purchased (rather than directly provided).

GOAL

To develop a system of enhanced services for children with complex health conditions in the community in which they reside, with linkages to a tertiary care center.

OBJECTIVES

Expand the Spina Bifida Program of the Child Development and Rehabilitation Center (CDRC) to include three rural clinic sites to provide community-based services which are comprehensive, coordinated, family-centered and culturally competent.
Provide training in their home communities to pediatricians, nurses, therapists, educators, and social service professionals about the unique needs of children with spina bifida and other chronic health conditions.
Develop linkages among the CDRC, Oregon Health Sciences University, community providers and service agencies, and among families, in a fashion to facilitate professional communication, care coordination, and inter-family support.
Expand the scope of the clinics to address care of children with other complex health conditions at each community-based site.

METHODOLOGY

Spina Bifida Program clinics were expanded to three sites in eastern and southwestern Oregon - Pendleton, La Grande, & Medford. A CDRC-based office was staffed by an administrative assistant and nurse coordinator. They managed the project, coordinated patient care, provided training, promulgated standards of care, and facilitated linkages. We carried out needs assessment through community participatory planning conferences. Collaboration with existing community programs enhanced linkages and efficiencies while meeting the unique needs and cultural setting of each region. Community professionals were trained by the Pediatrician, Nurse, Physical Therapist and Social Worker through clinical mentoring and didactic formats.

Each child was seen annually at the tertiary center and also annually at the community site. Originally children were seen by each professional pair (consultant and local participant) separately with coordinated staffings later in the day; later a group evaluation was found to be more efficient and conducive to coordination and learning. During the last year of the project, clinics focused on children with other complex chronic health conditions. NEXT STEPS staff participated in the community clinics during a two-year startup sequence, and remained available for consultation and liaison thereafter.

EVALUATION

The Oregon Institute for Public Policy carried out the following evaluation activities:

A Needs Assessment surveying families and community-based key informants before start-up and after two years.
An assessment of professionals' objective clinical knowledge about spina bifida before start-up.
A qualitative analysis of program activities and outcomes.

RESULTS & OUTCOMES

A total of seventy visits in twenty clinic sessions were held in the three sites. In each community six clinic sessions served children with spina bifida and one focused on feeding problems; one additional clinic at one site focused on autism. Thirty-three training presentations were given to audiences from six to over one hundred by NEXT STEPS staff and consultants from OHSU.

Benefits extended to children and professionals alike. Health status of children with spina bifida improved as a result of early identification of complications, enhanced skills of community-based professionals, improved education services, advocacy by parents, and new ways of delivery of care in local communities and at the tertiary center. Service utilization was more focused. Collegiality and respect was generated among participants. Community professionals reported a new mantel of credibility. The greater visibility of Neural Tube Defects and the increased access to services had a ripple effect, fostering liaison with non-participating providers and agencies.

The Spina Bifida Program CDRC also benefitted. As Program staff became more sensitive to the unique social and cultural characteristics of each distant participant community, they were able to provide more practical prescriptions and plans. A clinical experience with school personnel yielded a significant insight which was presented at a national professional meeting. Community participation of an Orthotist showed the benefits of addition of that profession to our Medical Center team.

We learned other lessons. A key to effectiveness was recruitment of professionals; we sought collegiality and accessibility. In a community with two Health Management Organizations, potential competition was diffused by recruiting a pediatrician from each. Despite our best efforts, a Community teams was decimated by professional mobility.

PUBLICATIONS AND PRODUCTS

Lectures were video taped. Brochures, a Novelle (comic book format widely used in Mexico) and audio tape about Folic Acid prevention of Neural Tube Defects were produced. Software templates were generated for computerized medical record summary, Clinic Visit summary, and Individualized Family Services Plan. A World Wide Web site posts information on spina bifida and describes NEXT STEPS, and is cross referenced with the Center for Policy on Children, University of Florida.

DISSEMINATION

A poster was presented at the Society for Research in Hydrocephalus and Spina Bifida, July 1996, and was published as a brief report in European Journal of Pediatric Surgery, December, 1996. Final results will be submitted to other societies. The Project Director is co-authoring an article comparing this project with a similar effort in Norway for publication in public health literature.

FUTURE PLANS AND FOLLOWUP

Two community sites have been transferred to Community Connections, a permanent program at CDRC. The third site team may continue, depending on local needs. We will share our experience within the University's Department of Pediatrics to emphasize the importance of liaison, coordination, mentoring, and responsiveness to community sociocultural characteristics.

REPLICATION

Chief costs of replication are project staff time and travel expenses. Our model underwrote a developmental pediatrician, nurse, social worker, and physical therapist. Travel costs are for tertiary-based specialists to participate in clinics, mentor, and teach. To launch this model, the first step is to evaluate community needs and stimulate interest. Thoughtful identification of volunteer participants follows. Many components could be replicated by a smaller project staff with contracted subspecialists skilled in interdisciplinary care and sociocultural community sensitivity.