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Children and Youth with Special Needs


Pediatricians Can Improve Preparedness Planning for Children and Youth with Special Needs

Pediatricians can help improve preparedness by being strategic in the way they communicate with others about children at risk. When counseling families with children and youth with special health care needs (CYSHCN), it is important to encourage the development of written preparedness plans in the event they are faced with a sudden emergency or disaster.

Family-Centered Medical Home Approach
A family-centered medical home is not a building, house, hospital, or home healthcare service, but rather an approach to providing comprehensive primary care. In a family-centered medical home, the pediatric care team works in partnership with a child and a child's family to assure that all of the medical and non-medical needs of the patient are met. Through this partnership, the pediatric care team can help the family/patient access, coordinate, and understand specialty care, educational services, out-of-home care, family support, and other public and private community services that are important for the overall health of the child and family.

Written Plans
In a disaster, the child and their family will benefit from having a clear, written comprehensive care plan. A comprehensive care plan includes a medical information plan, an emergency plan, and a working care plan.

Medical Information Plan
The medical information plan includes general information such as:
- Family and emergency contact information
- Primary care physician, specialist, and consultant contact information
- Medical history, including any allergies, hospitalizations, and recurrent problems
- Current diagnosis, treatment plan, medications
- Critical equipment and transport requirements
- Assets and challenges unique to the individual child
- Other information the family wants caregivers to know about their child

Emergency Plan
An emergency plan is a quick reference with child-specific information that can be used in an emergency. This plan should address the child's specific needs, medication that might be needed in an emergency, personal care requirements, adaptive equipment, transportation, and communication challenges. A child with multiple, complex conditions and/or recurrent life threatening events may need an emergency treatment plan that is more details and includes baseline physical and laboratory data.

Working Care Plan
A working care plan identifies issues opportunities for improvement or current focus areas for the child and care coordinator. This plan can be as simple as a written note developed during a visit, a more detailed plan of care developed during a meeting of the family, care coordinator, and clinician or a comprehensive, integrated care plan developed by the pediatric care team. The main components of the working care plan are:
- A prioritized list of main concerns and goals for improvement
- The current clinical, educational, and social information pertinent to the concern/goal
- The current plan or suggested intervention for that concern/goal
- The person(s) responsible for each intervention
- The due date for the intervention

Compiling all of this information in a Care Notebook could be valuable.

Coping and Adjustment
Emergencies or disasters are difficult for most families, but for those with special needs, the ability to manage or cope can be even more challenging. When children are exposed to circumstances that are beyond the usual scope of human experience (eg, a terrorist attack, natural disaster, or acts of violence), they may have difficulty understanding and coping with the events and may develop a range of symptoms, including trauma symptoms, depression, anxiety, or, if deaths are involved, bereavement. The AAP’s Promoting Adjustment and Helping Children Cope Web page offers more information and helpful resources related to coping and adjustment.

Additional Considerations
When treating CYSHCN, it is important to connect with Emergency Medical Services and other responders in advance to notify them if the child has a particular need for equipment that requires electricity. It is also important to consider the types of medications (asthma-related and others) and supplies (eg, inhaler) that a child might need to have unexpectedly. Because different regions may utilize different approaches to care, it is important to determine what resources are available and how to access them, especially if hospitalization or transportation is required.

It is also important to prevent CYSHCN from being exposed to situations where they might become even more vulnerable. One examples relates to seasonal influenza. Children with chronic medical conditions, such as asthma, diabetes mellitus, immunosuppression, or neurologic disorders are at a greater risk of influenza complications, hospitalization, and perhaps even death. It is important to ensure that the children at highest risk for developing influenza complications receive the seasonal influenza vaccine as soon as it is available and are treated early and aggressively if they develop influenza-like illness (ILI). The best way to prevent influenza is for children to get a seasonal influenza vaccine every year. Children with neurologic conditions should only get the intramuscular injection, not the intranasal vaccine.