planning for disasters for children with special needs

1. Planning for Disasters for Children with Special Needs

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.

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

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

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

allergiesrequiring special formula or diet

neurological disorders whose baseline is difficult to assess without caregivers 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

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

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

agents

All want 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.

Families and Providers Determine Necessary Needs and Supports in Addition to

Basic Preparedness

BehavioralCognitive

FunctionalMedical

MotorSensory

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

Home Preparedness

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

Families need to notifybothif their child requires special consideration in the event of emergencies

beforeemergencies happen.

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 ParentSiblings

GrandparentsOther Relatives

Day CareNursery/Preschool

Head StartFamily Day Care

Non-relative in Other HomesNon-relative in Childs Home

SchoolSelf-Care

SportsEnrichment Activities

ClubsSchool Care

No ArrangementsMultiple Arrangements

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

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)

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

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

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

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

Planning

Communication

Coordination

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

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 childrens post-evacuation location

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

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

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 obtainadditionalmedications and equipment during times of disaster

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

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

Name, DOB, date of last update, weight, guardians 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

directives*

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

out for EMS to honor.)

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

Ensuring that childrens 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

disaster

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

http://www.amchp.org/topics/a-g/emergency.php#def

http://www.amchp.org/topics/a-g/emergency_trans.php

Committee on Pediatric Emergency Medicine. Emergency Preparedness for Children with Special Health Care Needs. Pediatrics1999;104;e53

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

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

http:// ncchildcare.dhhs.state.nc.us/general/mb_contact.asp

www.redcross.org

www.mass.gov/eohhs/MassSupport

The State of Florida Family Preparedness Guide: www.doh.state.fl.us/rw_webmaster/prepareenglish042.pdf

www.childhealthdata.org

http://www.aap.org/advocacy/emergprep.htm

http://client.blueskybroadcast.com/AAP/AAP_Peds_21/index.html

planning for disasters for children with special needs

Documents

families families

special needs

home locations families

facility families

public school children

hours of care

medical condition

necessary needs