Karen H. Toker, MD, FAAP
Barbara J. Kruger, MPH, PhD, RN
In January of 2003, a team of professionals, facilitated by an American Academy of Pediatrics CATCH planning grant received by Karen Toker, MD and Barbara Kruger, MPH, PhD, RN, studied the system of care for children with special health care needs in Northeast Florida. This article summarizes some of our results, the desired outcomes which were developed as a result of our investigations, and the initial first steps toward the attainment of these outcomes.
One of the main objectives of our study was to assess the capacity of our community to provide a "Medical Home" to children with special needs. A "Medical Home" is a quality approach to providing health care services in a cost-effective manner, delivered by a primary-care physician or nurse practitioner, where health providers, families and related professionals work as partners to identify and access medical and non-medical services to help children and their families achieve their maximum potential. It has 7 components: accessible, family-centered, comprehensive, continuous, coordinated, compassionate, and culturally-competent care.
We spoke with physician, parent, educator, childcare provider and agency groups in order to educate them about the Medical Home and to assess where our community was in terms of this concept. We particularly wanted to emphasize the need for medical professionals, non-medical professionals, and families to work together to make the Medical Home a reality. We distributed written surveys to physicians and parents to determine their perception of what was already being done in the community. We also surveyed agencies in the community to identify those who felt that they were providing case management / care coordination to these children / families.
Results of Physician and Parent Surveys:
Surveys were sent to 195 physicians, mostly pediatricians, in Northeast Florida. Response rate for the physicians was 24% and demographics of the group showed that 70% were primary care physicians, 51% in private practice, 23% in community or public health centers, and 81% were in Duval County, 11% in Clay County. There was an equal distribution of males and females, and 68% reported being Caucasian, 11% Latino, 8% Asian. No African-Americans participated in the survey or chose to identify their race (13% of respondents left the race question blank). The mean percent of time reported spent caring for any special needs children was 26%. Many physicians (70%) said that they would provide a medical home for CSHCN and 53% said they would care for children with Medicaid insurance.
Surveys were completed by 75 parents of special needs children (a large percentage with developmental disabilities), most of whom had children age 3 years or over, and had pediatricians for medical providers; 55% were from Duval County, 20% from Clay County, 9% from St. Johns County with the rest from Baker, Nassau and other counties.
Accessibility: Physicians described their practices as having good accessibility, but not many provided weekday evening appointments or weekend appointments. All had good telephone accessibility but most did not use fax, voice mail, or e-mail for communication with families. However, 87% of parents felt that their physicians were accessible to them by office or phone most of the time when they needed them. Despite lower weekday evening and weekend appointment availability (compared to what is generally available nationally) parents we surveyed felt good about their accessibility to their physician.
Family-centered: Physicians said that their families played a central role in care coordination; 70% felt they helped families identify coping strategies and build on strengths "most" or "some" of the time. Parents, on the other hand, felt that their physicians asked about family strengths and helped families build on these strengths less often, and we identified this area as one for physicians to try to be more aware of in developing care plans for children with special needs.
Comprehensiveness: Eighty-one percent (81%) of the physicians provided preventive and primary care to CSHCN (11% pediatric specialists answered the questionnaire), but there was less involvement with non-medical services (only 53% referred to non-medical services "most of the time"). A lack of contact with schools was particularly noted. On the physician survey 19% said they never contacted the school about the child's health and educational needs. Only 49% said that they assessed social, emotional, educational and health status at each visit "most of the time." Only 23% linked families to support/parent resources most of the time, while 45% occasionally did this. Parent surveys were generally consistent with these findings, although 39% of parents said that their physicians never tell them about parent support groups. Some parents felt that communication with the school was not a responsibility of their physician.
Coordination: Although 74% of the physicians said they were the primary coordinator of medical care for the children with special health care needs in their practices, only 15% had a written care plan "most of the time" and 30% never participated in the IFSP or IEP process. Meanwhile, 13% of the physicians left the question about the IFSP and IEP blank which suggests that pediatricians and family physicians may not be aware of what these are and how important it is for them to be involved in these processes. There were also concerns from the physicians that the Children's Medical Services' nurses had case loads which were so high as to render it difficult for them to be effective in care-coordination. Lack of physician time, reimbursement, and office staff were listed as the main barriers for not doing care-coordination in the office. Parent surveys showed about 64% saying that their physician or staff managed all their child's health care needs, but only 48% said their physician helped them find or get the services they need.
Cultural-competency: Multiple barriers were identified from physician and parent surveys with having translators available for families who do not speak English, and the availability of written materials in other languages.
The major community need identified by the physicians was the perceived lack of mental health resources.
Outcomes developed as a result of this assessment include:
-Parents will be referred to peer support services
-Family as Partner Model will be a standard of care
-Families will be involved in training of professionals
-Families will have access to information in their primary language
-Transitions will be facilitated by providers
-Communication among all providers will improve
-Health and other services will be coordinated across systems
-CSHCN will have access to primary and specialty health care
-Timely communication will occur across the system
-Mental Health Services will be available
-CSHCN will have access to equipment and supplies
Develop CSCSN as the lead non-profit agency to collaborate with families, professionals and agencies in Northeast Florida to develop family-centered, comprehensive, coordinated system of care for children with special needs.
Health Committee has been established under the umbrella of the CSCSN to address needs identified in the CATCH grant. Two projects identified for 2004 are:
1) Disseminate a newsletter to inform the health community about issues relating to children with special needs
2) Plan a study of school nurses who care for CSHCN
Partner with the Jacksonville Parent-Leader Forum to identify barriers that impede matching parents of children with special needs with other parents and develop solutions.
Family strategies that are awaiting more resources are:
a. Educating providers about resources for parents
b. Networking with United Way 211 information line
c. Creating the Family as Partner model
d. Identifying major ethnic groups and language resources, and other activities to enhance cultural sensitivity
Partner with academic institutions to encourage interdisciplinary preparation of medical, nursing, and social service students to collaboratively care for children with special needs and their families.
Achievement of these outcomes will require the involvement of many community groups
Special thanks to...
The physicians and parents for survey participation, CATCH work teams for facilitating grant objectives,
and UNF nursing students for service hours.
Karen H. Toker is a pediatrician and Urban Child Health Consultant in Jacksonville Florida. She also serves as the Chairperson of the Commission on Services for Children with Special Needs Health Committee.
Barbara J. Kruger is an assistant professor at the University of North Florida, College of Health, School of Nursing. She teaches community/public health nursing and has a special interest in research related to children with special needs.