Excerpted from The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions, edited by Robert E. Nickel, M.D., & Larry W. Desch, M.D.

Copyright © 2000 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

For many children with disabilities and chronic conditions, evaluation by an experienced team of professionals is necessary for accurate diagnosis and optimal treatment planning. Evaluations by individual disciplines may result in incorrect diagnoses, inappropriate treatment recommendations, and increased cost of care. Parents are essential participants on the team with regard to both diagnostic and treatment decisions. Specialty teams include the child development, craniofacial, spina bifida, and neurodevelopmental teams. The following paragraphs highlight the importance of team evaluations for both diagnosis and management planning.

1. Diagnostic evaluations

   Children who are suspected of having autism, children with developmental delays and behavior problems, and children with severe behavior problems should be evaluated by an experienced child development team composed of a developmental pediatrician, a speech-language pathologist, and a psychologist. Other staff may be needed (e.g., an occupational therapist), depending on associated concerns. Care coordination should be provided by the medical social worker on the team or by the referral source if comprehensive care coordination is available. An accurate developmental diagnosis depends on the sharing of performance information across disciplines. The child's communication and cognitive abilities are critical components of an accurate diagnosis. Furthermore, care coordination in such cases involves medical, educational, and behavioral services. Decisions about the use of medication must be based on a thorough understanding of the functional intent of the problem behavior.

2. Management planning

   Children with certain known diagnoses (e.g., cleft lip and palate, spina bifida, cerebral palsy) require ongoing care by a team of experienced specialists who consult with the primary care physician and parents for the purposes of updating the management plan and handling specific management concerns. In these instances, the treatment recommendations of one professional directly affect those of another. Decisions about the timing of orthodontic care for children with cleft lip and palate may depend on the treatment recommendations of the pedodontist and the plastic surgeon and are assisted by information from the speech-language pathologist regarding voice quality and the need to address palatal insufficiency as part of the treatment plan. Recommendations for continence programs or therapy services for a child with spina bifida and a recent change in continence and gait depend on information from professionals in several disciplines. The child may have a symptomatic tethered cord and require surgical release before other treatment is begun. Similarly, treatment decisions with regard to children with cerebral palsy often require information from an orthopedist, a developmental pediatrician, and a physical therapist. Team evaluations promote appropriate care, long-term cost savings, and overall higher-quality care. Some children (e.g., children with human immunodeficiency virus [HIV] infection) may receive nearly all of their care related to their disability or chronic condition at a tertiary care medical center.

3. Care coordination

   Liptak and Revell described the following components of care coordination, which mirror the competencies for providing secondary-level health services:

   • Identify and assess the needs of children and their families (needs assessment)
     
   • Plan and arrange for medical and nonmedical services (comprehensive care planning)
     
   • Facilitate and coordinate services (including the training of community providers)
     
   • Monitor services and patient progress (follow-up)
     
   • Counsel, educate, train, and support patients and their families (empowerment) (1989, p. 465)

   
   

   Regular exchange of information among the primary care and other service providers is critical for the effective coordination of services. A sample form (the Health Information Questionnaire for Children Receiving Early Intervention/Early Childhood Special Education [EI/ECSE] Services; Nickel, 1998) for the exchange of written information between the primary care office and early intervention (EI)/early childhood special education (ECSE) staff is provided in the Appendix at the end of this chapter. The Health Information Questionnaire was designed so that the health professional can provide important information to EI/ECSE staff with limited use of the health professional's time. The primary care provider should review the child's individualized family service plan (IFSP) or individualized education program (IEP) regularly and contribute health information to the development of the IFSP or IEP as needed. The IFSP and IEP are summaries of the child's educational and related services.

   Care coordination may be available from exceptional needs care coordinators (ENCC) of managed care plans, nurses in state MCH programs (services for children with special health care needs), local EI and school staff, developmental disabilities care coordinators, and other agencies. It is important for the primary care physician and the nurse to be aware of local resources and to provide adequate time for care coordination in their office to collaborate fully with parents and community service providers.

4. Enabling services

   Children with disabilities and chronic conditions and their families may require a variety of enabling or family support services. Without such supports, many families may be confused and overwhelmed by the complex and at times conflicting treatment recommendations of different service providers, miss appointments, and fail to follow up with needed services (Cooley, Olsen, & McAllister, 1994). For these families, enabling services are necessary to ensure optimal medical outcomes. Enabling services include

   • Respite care and child care
     
   • Transportation to appointments
     
   • Contact with other families who have children with similar disabilities or conditions (e.g., the Parent-to-Parent program of The Arc of the United States: A National Organization on Mental Retardation [more commonly called The Arc; formerly known as the Association for Retarded Citizens])
     
   • Parent support groups (e.g., state and national chapters of the Spina Bifida Association of America, local autism parent groups)
     
   • Advocacy and legal aid (e.g., state and national chapters of The Arc)
     
   • Financial services (e.g., SSI)
     
   • Counseling
     
   • Assistance with care coordination
     

   
   

5. Counseling the child and the family

   A particularly challenging role for the primary health care professional is counseling the parents of an infant or a child when the diagnosis of a developmental disability is first made. Health professionals must schedule adequate time, listen, be respectful and compassionate, provide information clearly and in understandable terms, and acknowledge the parents' reactions. Parents may be upset, confused, or angry. These reactions may be expressions of anxiety related to the start of the mourning process for the feelings of loss that they are experiencing (MacKeith, 1973; Nelson, 1989).

   If possible, both parents should be present for the conference with the primary care physician regarding initial diagnosis, and other family members may be present also if the family so desires. Information should be shared completely yet in small amounts, with frequent checks to make sure that the parents understand it. The physician or nurse should also emphasize the child's positive aspects and strengths. The following list is a step-by-step guide for presenting the child's parents and other family members with information about the diagnosis: Begin with a review of the parents' concerns and observations.

   • Review the results of the studies and evaluations that established the diagnosis.
     
   • Ask the parents to compare these results with their observations.
     
   • Discuss the natural history of the child's condition and associated problems as well as the prognosis, if appropriate.
     
   • Recommend any further studies as needed to clarify the diagnosis or treatment recommendations.
     
   • Review the child's IFSP or IEP with the family (AAP, Committee on Children with Disabilities, 1992), discuss medical treatment options, and make recommendations for the initial management plan. Clarify the responsibilities of the primary care office, the school, and other service providers.
     
   • Discuss family support service needs and provide information about community services, including a parent-to-parent network.
     
   • Review your office procedures for children with disabilities and chronic conditions. State clearly that the primary care physician and the parents are partners in the care of the child and that the parents will be involved in all treatment decisions.
     
   • Provide written information about the condition and recommended treatments as well as resources for further information.