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Planning for Disasters for Children with Special Needs. Children (and Youth) With Special Health Care Needs (CYSHCN).

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Planning for Disasters for Children with Special Needs

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Planning for Disasters for Children with Special Needs

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Children (and Youth) With Special Health Care Needs (CYSHCN)

“Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

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Some Numbers from the National Survey of CSHCN

  • In NC 15.4% of children have special health care needs

  • This is approximately 333,895 children in NC

  • Only about 7.8% of CSHCN report receiving SSI benefits in NC for a disability

  • About 2.4% of CSHCN were uninsured at the time of the survey

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Children are more vulnerable…

  • Skin is thinner and larger surface to mass ratio

  • Inhale larger doses in same period of time

  • Closer to the ground

  • Less fluid reserve--get dehydrated faster

  • Limited motor and cognitive skills

  • Can shift quickly from stable to life-threatening

  • More sensitive to changes in temperature and faster metabolism

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CYSHCN: Condition Specific Concerns

  • respiratory conditions (asthma, cystic fibrosis, bronchopulmonary dysplasia) when exposed to aerosolized biological or chemical agents or environmental contaminants may worsen

  • endocrine disorders when exposed to agents that produce vomiting or diarrhea or in which dehydration would place them at very high risk (congenital adrenal hyperplasia)

  • metabolic disorders or with severe food

    allergies requiring special formula or diet

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Condition Specific Concerns (cont.)

  • neurological disorders whose baseline is difficult to assess without caregiver’s input

  • require medical devices, medical supplies or life-sustaining treatment (nebulizers, chest physiotherapy vests, oxygen, ventilators, dialysis)

  • require medication (insulin, anti-epileptics, inhalers, Hemophilia factor) on a regular


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Condition Specific Concerns (cont.)

  • musculo-skeletal disorders (cerebral palsy, muscular dystrophy) who cannot move independently or require assistance to ambulate

  • cardiac conditions whose exercise tolerance limits the endurance required for walking/running during transport/evacuation

  • require tube or parenteral feedings by trained personnel

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Condition Specific Concerns (cont.)

  • behavioral, emotional or mental disorders whose condition may be exacerbated by separation, transition or anxiety

  • communication disorders (hearing loss, non-verbal or severe speech articulation problems)

  • an immunocompromised state (cancer, HIV/AIDS) due to their medical condition or its treatment, when exposed to infectious


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Families and CYSHCN

Marlyn Wells

Family Liaison Specialist

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Disaster Planning for Families

Allwant assurances our families are safe

before helping others.

Early Preparation is Key

  • Check house for home hazards and repair or fix.

  • Know and practice basic first aid.

  • Develop and practice a communication plan.

  • Collect and store necessary supplies.

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Disaster Planning for Families

Families and Providers Determine Necessary Needs and Supports in Addition to

Basic Preparedness

Behavioral Cognitive

Functional Medical

Motor Sensory

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Disaster Planning for Families

Home Preparedness

Safely stockpile, in addition to extra medicines

  • Sensory

    • Music player, preferred food choices, clothing, etc.

  • Cognitive

    • Communication board or systems, calming objects, etc.

  • Medical supplies

    • Catheters, IV tubing, dressings, ostomy supplies, etc.

  • Functional supplies

    • Diapers, communication systems, toys, clothes, etc.

  • Motor supplies

    • Wheelchair, crutches, braces, slings, etc

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Disaster Planning for Families

Home Preparedness

  • Power Companies and EMS services need to be notified about the presence of CYSHCN in a community.

  • Families need to notify both if their child requires special consideration in the event of emergencies

    – before emergencies happen.

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Disaster Planning for Families

Community Preparedness

Children with special health care needs are now in communities in unprecedented numbers. According to the 2005 US Census, children and youth (5-15 yrs) can be found in the following out of home environments:

Other Parent Siblings

Grandparents Other Relatives

Day Care Nursery/Preschool

Head Start Family Day Care

Non-relative in Other Homes Non-relative in Child’s Home

School Self-Care

Sports Enrichment Activities

Clubs School Care

No Arrangements Multiple Arrangements

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Disaster Planning for Families

Community Preparedness

  • Supplies necessary for at minimum 24 hours of care need to be with CYSHCN in out of home locations

  • Families need to alert community locations of specific long term needs in the event an emergency requires CYSHCN sheltering at that facility

  • Families need to alert EMS of CYSHCN presence in community locations

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Schools and Child Care Settings

Jessica Gerdes, RN, MS, NCSN

Lead State School Health Nurse Consultant

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Some Numbers…..

  • Among children enrolled in public schools in NC, almost 230,000 (17%) have chronic health conditions

  • Almost 30,000 receive medication daily, at school

  • More than 20,000 need specialized interventions at school every day (bladder catheterization, tracheal suctioning, tube feedings)

  • 17% of public school children have special health care needs

    (Source: DHHS, DPH, Annual Survey of School Health Services, 2006-07)

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Schools – addressing chronic health care needs

  • Students come to school with PICC lines

  • Students come to school with central lines (Portacaths®, Hickman® catheters, Broviac® catheters)

  • Students come to schools with “fresh” trachs and G-tubes

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Schools – addressing mental health care needs

  • Students come to school with newly diagnosed and/or severe mental conditions

  • The mental health conditions often require use of medications with dosages that need to be closely titrated to symptoms

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Child Care Centers

  • Mirror the specialized health care needs of school children

    • Almost 43,000 of the more than 250,000 children enrolled in regulated, center-based child care have special health care needs

      Source: NC Division of Child Development – December 2007

  • Have fewer medically-prepared staff to address the needs in case of emergency

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In the event of emergencies in schools and child care facilities

  • The critical question that needs to be addressed in all emergency plans:

    • How to meet the special health care needs of children who are in school or child care when the disaster strikes

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The Keys to Successful Outcomes

  • Planning

  • Communication

  • Coordination

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Institutions and Residential Treatment Facilities

Kim Symonds, RN

Director of Nursing

Tammy Lynn Center for Developmental Disabilities

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Residential Facilities in NC

  • 5 residential facilities in the medically fragile grouping housing children and young adults with developmental disabilities and special health care needs in NC

    • Tammy Lynn Center for Developmental Disabilities – Raleigh

    • Horizons Residential Care Center – Rural Hall

    • Holy Angels Services – Belmont, NC

    • Piedmont Residential Development Center – Concord

    • Carobell, Inc – Hubert, NC

  • Other residential treatment facilities and institutional settings not specifically recognized as “medically fragile” are located in every county in NC and many in very rural areas

  • Importance of identifying residential and institutional facilities on some sort of map to be distributed statewide

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Who are these children?

  • Children living in many residential facilities are there because of medical fragilities that can no longer be handled in the home.

    • Respiratory diseases

    • Controlled and uncontrolled seizure disorder

    • Severe sensory stimulation issues

    • Spasticity and/or immobility that places serious physical limitations on the child

    • Non-verbal and often non-communicative of specific needs

    • Need for total assistance for all activities of daily living

    • Behavioral concerns requiring 24-hour awake supervision and intervention

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  • Notification of Event – many residential facilities may rely on the communities around them for notification of a disaster

  • Establishment of a local call list for areas that are not equipped with notification sirens or alarms

  • Have a clear and concise plan in place for evacuation to pre-determined shelters

    and hospitals

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  • Transportation for multiple children living in long-term care, residential facilities, and institutions

  • In addition to moving all residential clients, ensuring medications, nutritional supplements, essential technology, and trained staff are available to accompany children to shelter

  • Depending on existing direct care staff to stay on job during a crisis that could also involve their own families

  • Communication with parents and guardians to provide them with information related to their children’s post-evacuation location

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Medical Information to accompany each child during evacuation

  • Emergency folders with updated health information, medications, complete list of diagnoses, allergies, etc.

  • Implementation of AAP/ACEP Emergency Information Form on all of our residential and day services children

  • Consent for emergency medical care from parent or guardian

  • Adhering to HIPAA standards and protecting confidentiality of children in our care

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How EMS can help

  • Talking with EMS units across the state who respond to 911 calls from facilities with children to help establish location of those sites

  • EMS units participating in in-service training at facilities and institutions to learn about residential children with special health needs

  • Information sessions provided to each new rotation of EMS providers

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A Priority for Health Care Providers

Gerri Mattson, MD, MSPH

Pediatric Medical Consultant

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Partnering With Families To…

  • Choose a family disaster plan

  • Notify utility companies to provide emergency support and contingency plans for alternative power

  • Maintain medications and equipment if supply is disrupted during a disaster

  • Know how to obtain additional medications and equipment during times of disaster

  • Help family members to learn to assume the role of in-home health care providers if needed

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Portable Medical Summary

  • An up-to-date accessible emergency information form with medical information that goes with the child in all settings

  • Use by families and provider offices (EMR)

  • Linkage with 911 dispatch or EMS squad

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Emergency Information Form for CSHCN (AAP/ACEP)

  • Name, DOB, date of last update, weight, guardian’s name, emergency contact, pediatricians and other health care professionals, primary ED

  • Major chronic illnesses and disabilities, baseline physical and mental status, baseline vital signs and lab studies

  • Immunization history, medications, med allergies, food allergies, and advanced


    (*Most states have advanced directives forms that need to be filled

    out for EMS to honor.)

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Registry: Voluntary Database

  • Practices create a “list” of CYSHCN to do care coordination for their clients and families

  • Can use these registries to create a voluntary database system for emergency situations to access basic health information

  • Make accessible to EMS and hospital


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Disaster Preparedness Plans/Drills

  • Ensuring that children’s issues are addressed as early as possible in the development of disaster preparedness programs, materials, and activities

  • Involving pediatric experts in all levels of disaster planning and response

  • Continuous training drills for communities, professionals, families and registered/retired volunteers who will aid CYSHCN in a


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Additional Considerations….

  • Need to plan for mental health support and resources for children, CYSHCN and their families during and after disasters

  • Need for interpreters for non-English speaking families and for individuals who are hearing-impaired during a disaster

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  • Committee on Pediatric Emergency Medicine. Emergency Preparedness for Children with Special Health Care Needs. Pediatrics 1999;104;e53

  • PEDIATRICS Vol. 117 No. 2 February 2006, pp. e340-e362

  • PEDIATRICS Vol. 116 No. 3 September 2005, pp. 787-795


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  • The State of Florida Family Preparedness Guide:




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Thank You!

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