Medical Team Resource
Caring for children and youth with special health care needs requires a team effort. Good communication is essential for successful teamwork: Working collaboratively toward the best medical care benefits every member of the team, most notably the patient. While each team may vary in its composition, below is a list of possible team members and their roles:
Patient, whose medical, developmental, social, educational, and other needs form the basis for the team’s activities.
Family includes the parents and sometimes extended family. Around the child, it forms the central core of the medical team. The family’s input is vital to achieve the best care for the child. See Role of the Family resource for more information.
Primary Care Physician (PCP) leads the team, directs the medical decisions, and synthesizes recommendations from the other team members regarding the best care for the patient. See Role of the PCP resource for more information.
Sub-specialists are physicians that have expertise in one specific area of the child’s care, make recommendations to the PCP, and collaborate with other team members.
Care Coordinator is usually a nurse, social worker or skilled administrative person who coordinates care for the patient in an effort to facilitate the best care. The care coordinator performs many, varied activities, including scheduling appointments, arranging for medical transportation, ordering supplies, arranging for home nursing, interfacing with insurance companies, interfacing with schools, and attending to patient and family needs. In more complex cases a care manager may be involved to help integrate the management plans between many different providers.
Social Workers help the family to address their social needs by directing them to emotional support services, financial resources, and educational resources. Because financing of health care can affect access to needed medical services, the social worker’s assistance with applications to federal, state, and other support programs may be crucial in the care of the child. When involvement of child protective services is needed, social workers have a central role in the interaction between the family and the child protection service.
Psychiatrist/psychologists can assist in many situations to support or treat the emotional and psychological needs of parents and patients. Support groups and individual counseling can help everyone cope with the stress of illness.
Nutritionists help determine a child’s caloric and other nutritional needs. They are able to tailor nutritional recommendations to the often unique nutritional needs of children and youth with chronic illness based on the specific illness, disease process, or metabolic status. In addition, the individuals’s physical capabilities/ restrictions and activities of daily living will be considered in nutritional planning. If an illness or disease process increases metabolic requirements or causes specific nutrient deficiency, the patient will need caloric or nutrient supplementation. Other children may be unable to metabolize specific nutrients and must have these nutrients restricted in their diets. Many children and youth with special healthcare needs are non-ambulatory and have low caloric expenditure. These children are at risk for excessive weight gain unless caloric intake is moderated. The nutritionist also provides important support and nutritional management for children and youth who must be fed by gastrostomy or other enteral feeding methods or who may require intravenous nutrition.
Physical Therapists (PT) help with the treatment and management of children with a variety of developmental, neuromuscular and skeletal diseases. Most treatments focus on gross motor skills, balance, coordination, strength and endurance. PTs also assist in fitting patients for splints, MAFOs (molded ankle foot orthotics), and appropriate wheelchair and assistive devices. Some examples of patients that would benefit from PT are the following:
- Children with cerebral palsy
- Range of motion exercises to prevent contractures
- Fitting for hand splints/MAFOS
- Wheelchair assessments
- Children with developmental delay—assisting in skill acquisition
- Children with muscle weakness
- Strengthening exercises
- Weight bearing
- Children with a sports injury— regaining strength and endurance
- Children with developmental delay
- Facilitating developmental progress
- Teaching how to navigate their environment
- Wheelchair bound patients
- Positioning in and propulsion of the wheelchair
- Adapting the home for wheelchair use
- Improving communication and independence with assistive devices