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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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children and youth with special health care needs cyshcn
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.”

some numbers from the national survey of cshcn
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
children are more vulnerable
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
cyshcn condition specific concerns
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

condition specific concerns cont
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


condition specific concerns cont7
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
condition specific concerns cont8
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


families and cyshcn

Families and CYSHCN

Marlyn Wells

Family Liaison Specialist

disaster planning for families
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.
disaster planning for families11
Disaster Planning for Families

Families and Providers Determine Necessary Needs and Supports in Addition to

Basic Preparedness

Behavioral Cognitive

Functional Medical

Motor Sensory

disaster planning for families12
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
disaster planning for families13
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.

disaster planning for families14
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

disaster planning for families15
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
schools and child care settings

Schools and Child Care Settings

Jessica Gerdes, RN, MS, NCSN

Lead State School Health Nurse Consultant

some numbers
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)

schools addressing chronic health care needs
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
schools addressing mental health care needs
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
child care centers
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
in the event of emergencies in schools and child care facilities
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
the keys to successful outcomes
The Keys to Successful Outcomes
  • Planning
  • Communication
  • Coordination
institutions and residential treatment facilities

Institutions and Residential Treatment Facilities

Kim Symonds, RN

Director of Nursing

Tammy Lynn Center for Developmental Disabilities


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

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


  • 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



  • 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

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

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
a priority for health care providers

A Priority for Health Care Providers

Gerri Mattson, MD, MSPH

Pediatric Medical Consultant


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
portable medical summary
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
emergency information form for cshcn aap acep
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.)

registry voluntary database
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



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


additional considerations
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
  • 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
  • The State of Florida Family Preparedness Guide:
thank you

Thank You!

Questions for the panelists???