Emergency Care Plans for Children with Special Health Care Needs

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Emergency Care Plans for Children with
Special Health Care Needs
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Objectives

• Describe 3 examples of emergency needs that
  providers will encounter
• Describe the benefits for use of an emergency
  care plan
• Describe KIDBase and one way to implement a
  KIDBase program in your community

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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
(2005-06)

• 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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More Numbers from NC Schools.

• Among children enrolled in public schools
• in NC, more than 237,000 (17) have
• chronic health conditions
• More than 30,400 medication orders are on file in
  schools
• More than 24,000 school children need specialized
  interventions at school every day (bladder
  catheterization, tracheal suctioning, tube
  feedings)
• (Source NC DHHS, NC DPH, Annual Report of School
  Health Services,
• School Year 2007-08)

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And more numbers from NC child care

• Almost 43,000 of the more than NC 250,000
  children enrolled in regulated, center-based
  child care have special health care needs
• Source NC Division of Child Development
  December 2007

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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 Many Conditions

• Respiratory conditions
• Cardiac conditions
• Endocrine disorders
• Genetic disorders
• Hematology and cancer disorders
• Immune disorders
• Kidney disorders

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More Conditions

• Metabolic disorders
• Severe food allergies
• Neurological disorders
• Developmental disorders
• Mental health disorders
• And the list goes on

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Common Themes Across Conditions

• 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
• basis

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Common Themes (cont.)

• Often cannot move independently or require
  assistance to ambulate
• Exercise tolerance limits the endurance required
  for walking/running during transport/evacuation
• Require tube or parenteral feedings by trained
  personnel

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Common Themes (cont.)

• Condition may be exacerbated by separation,
  transition or anxiety
• Communication issues
• An immunocompromised state due to their medical
  condition or its treatment, when exposed to
  infectious agents

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Some Helpful Responses

• Identifying children with special needs
• Generating a portable medical summary
• Including these children in registries for care
  coordination

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Portable Medical Summary

• Emergency folders with updated health
  information, medications, complete list of
  diagnoses, allergies, etc.
• Implementation of AAP/ACEP Emergency Information
  Form on all special needs 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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Emergency Information Form for CSHCN (AAP/ACEP)

• 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, physical findings and neurological
  status
• 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.)

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AAP/ACEP (cont.)

• Primary language and language constraints
• Signature and consent
• Prostheses, appliances, and advanced technology
  devices
• Baseline labs and other studies
• Foods to be avoided and procedures to be avoided
  and why
• Common presenting problems and findings with
  specific suggested managements

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Hitchcock Care Plan

• Nickname
• Assets and strengths
• Challenges (list behavioral, communication,
  sensory, stamina/fatigue, learning, etc.)
• List of specific equipment and assistive tech
• School system and child care
• Special circumstances/what would like to know

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Palmetto Primary Care Plan

• Different approach to how to identify language
  spoken and communication concerns
• Requires pre-cert/auth
• Family members
• Pharmacy and DME supplier
• Dose, time and route for meds and special formula
• Key community contacts

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Registry Care Coordination

• Practices create a list with some info on
  CYSHCN to do care coordination by condition or
  issue
• Practices and communities can use info to create
  a database system for emergency situations to
  access basic health information
• Selected information on CSHCN from this list
  can be made accessible to EMS, health
  departments, hospital staff, SMAT, etc.
• with parental consent

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KIDBase

• Kids Information Database Access System for
  Emergencies
• What is it?
• Who does it benefit?
• How does it work?
• How can EMS use it in the community?

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What is KIDBase?

• NC EMSC Program helps ensure that children with
  special health care needs receive the care they
  need in medical emergencies.
• A way to keep emergency medical care personnel
  informed of the special needs of a special health
  care needs child so that appropriate and timely
  care can be provided

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What is KIDBase?
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How Does It Work?

• KIDBase brochure for families
• KIDBase medical information form
• KIDBase enrollment postcard
• KIDBase window cling for ID

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KIDBase Medical Information Form
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KIDBase Medical Information Form
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How Does It Work?

• Scenario
• 911 call involving child with a tracheostomy
  tube who is in respiratory distress
• Dispatcher notifies local EMS, This is a
  KIDBase child and he/she has an emergency care
  plan.
• EMS arrives and asks for KIDBase form or other
  portable medical summary
• Assists EMS with assessment and treatment
• Copy of KIDBase form or summary taken with EMS
  for ED

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How Does It Work?

• Scenario
• Who needs to be involved in the program to make
  this scenario work?
• ? Family
• Childs primary care provider
• Public Service Answering Point/Dispatcher
• EMS personnel - EMS Training Officers

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How Does It Work?

• Important component Reach out to families of
  CSHCNs
• Exceptional Childrens Program, Family Voices,
  non-profit childrens disease specific groups
• Pediatricians offices, family practice offices
• Neonatal intensive care units
• Hospital social services departments, child life
  specialists
• Schools, child care, local health departments,
  faith-based organizations

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How Does It Work?

• Outreach resources available, NC EMSC
• Parent/caregiver letter
• Primary Care Provider letter
• Dispatcher letter
• Community Based Services Agency letter
• FAQs
• Promotion Tips

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How Can EMS Use This in The Community?

• Convene meeting of stakeholders, i.e. folks in
  scenario, representatives of organizations who
  may be willing to do outreach
• Provide materials
• Do outreach to identify families to participate

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How Can EMS Use This in The Community?

• How to get KIDBase materials?
• Gloria Hale, MPH
• [phone]
• gloria.hale_at_ncmail.net
• Downloadable on web www.ncems.org/emsc/kidbase.h
  tml

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How Can EMS Use This in The Community?

• Web-based KIDBase medical information form is
  in interactive pdf form
• KIDBase materials will also be in Spanish
• Remember that parents/caregivers are the
  experts on their child

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Questions?

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References

• http//www.amchp.org/topics/a-g/emergency.phpdef
  
• http//www.amchp.org/topics/a-g/emergency_trans.ph
  p
• Committee on Pediatric Emergency Medicine.
  Emergency Preparedness for Children with Special
  Health Care Needs. Pediatrics 1999104e53
• 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_con
  tact.asp

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Resources

• www.redcross.org
• www.mass.gov/eohhs/MassSupport
• The State of Florida Family Preparedness
  Guide www.doh.state.fl.us/rw_webmaster/prepareeng
  lish042.pdf
• www.childhealthdata.org
• http//www.aap.org/advocacy/emergprep.htm
• http//client.blueskybroadcast.com/AAP/AAP_Peds_21
  /index.html

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Thank You! Gloria Hale, North Carolina
Office of EMS, EMS-C Coordinator
gloria.hale_at_ncmail.net Gerri Mattson, MD,
MSPHPediatric Medical Consultant,Children and
Youth Branch, North Carolina Division of Public
Healthgerri.mattson_at_ncmail.net