Emergency Care Plans for Children with Special Needs

North Carolina Division of Public Health

Children and Youth Branch

Emergency Care Plans for Emergency Care Plans for Children with Special Children with Special Health Care NeedsHealth Care Needs



ObjectivesObjectives

Describe 3 examples of emergency needs that Describe 3 examples of emergency needs that providers will encounterproviders will encounter

Describe the benefits for use of an emergency Describe the benefits for use of an emergency care plan care plan

Describe KIDBase and one way to implement Describe KIDBase and one way to implement a KIDBase program in your communitya KIDBase program in your community



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

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



Some Numbers from the National Some Numbers from the National Survey of CSHCN (2005-06)Survey of CSHCN (2005-06)

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

This is approximately 333,895 children in NCThis is approximately 333,895 children in NC

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

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



More Numbers from NC Schools….More Numbers from NC Schools….

Among children enrolled in public schools Among children enrolled in public schools in NC, more than 237,000 (17%) have in NC, more than 237,000 (17%) have chronic health conditionschronic health conditionsMore than 30,400 medication orders are on file in More than 30,400 medication orders are on file in schoolsschoolsMore than 24,000 school children need specialized More than 24,000 school children need specialized interventions at school every day (bladder interventions at school every day (bladder catheterization, tracheal suctioning, tube feedings)catheterization, tracheal suctioning, tube feedings)

(Source: NC DHHS, NC DPH, Annual Report of School Health Services, (Source: NC DHHS, NC DPH, Annual Report of School Health Services, School Year 2007-08)School Year 2007-08)



And more numbers from NC child And more numbers from NC child care…care…

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



Children are more vulnerable…Children are more vulnerable…

Skin is thinner and larger surface to mass ratioSkin is thinner and larger surface to mass ratioInhale larger doses in same period of timeInhale larger doses in same period of timeCloser to the groundCloser to the groundLess fluid reserve--get dehydrated fasterLess fluid reserve--get dehydrated fasterLimited motor and cognitive skillsLimited motor and cognitive skillsCan shift quickly from stable to life-threateningCan shift quickly from stable to life-threateningMore sensitive to changes in temperature and More sensitive to changes in temperature and faster metabolismfaster metabolism



CYSHCN: Many Conditions CYSHCN: Many Conditions

Respiratory conditions Respiratory conditions

Cardiac conditions Cardiac conditions

Endocrine disordersEndocrine disorders

Genetic disordersGenetic disorders

Hematology and cancer disordersHematology and cancer disorders

Immune disordersImmune disorders

Kidney disordersKidney disorders



More ConditionsMore Conditions

Metabolic disorders Metabolic disorders

Severe food allergiesSevere food allergies

Neurological disordersNeurological disorders

Developmental disordersDevelopmental disorders

Mental health disordersMental health disorders

And the list goes on……And the list goes on……



Common Themes Across ConditionsCommon Themes Across Conditions

Baseline is difficult to assess without caregiver’s Baseline is difficult to assess without caregiver’s inputinput

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

Require medication (insulin, anti-epileptics, inhalers, Require medication (insulin, anti-epileptics, inhalers, Hemophilia factor) on a regular Hemophilia factor) on a regular basisbasis



Common Themes (cont.)Common Themes (cont.)

Often cannot move independently or require Often cannot move independently or require assistance to ambulateassistance to ambulate

Exercise tolerance limits the endurance required for Exercise tolerance limits the endurance required for walking/running during transport/evacuationwalking/running during transport/evacuation

Require tube or parenteral feedings by trained Require tube or parenteral feedings by trained personnelpersonnel



Common Themes (cont.)Common Themes (cont.)

Condition may be exacerbated by separation, Condition may be exacerbated by separation, transition or anxietytransition or anxiety

Communication issuesCommunication issues

An immunocompromised state due to their An immunocompromised state due to their medical condition or its treatment, when medical condition or its treatment, when exposed to infectious agentsexposed to infectious agents



Some Helpful ResponsesSome Helpful Responses

Identifying children with special needsIdentifying children with special needs

Generating a portable medical summaryGenerating a portable medical summary

Including these children in registries for care Including these children in registries for care coordination coordination



Portable Medical SummaryPortable Medical Summary

Emergency folders with updated health information, Emergency folders with updated health information, medications, complete list of diagnoses, allergies, medications, complete list of diagnoses, allergies, etc.etc.Implementation of AAP/ACEP Emergency Implementation of AAP/ACEP Emergency Information Form on all special needs children Information Form on all special needs children Consent for emergency medical care from parent or Consent for emergency medical care from parent or guardianguardianAdhering to HIPAA standards and protecting Adhering to HIPAA standards and protecting confidentiality of children in our careconfidentiality of children in our care



Emergency Information Form for Emergency Information Form for CSHCN (AAP/ACEP)CSHCN (AAP/ACEP)

Name, DOB, date of last update, weight, guardian’s Name, DOB, date of last update, weight, guardian’s name, emergency contact, pediatricians and other name, emergency contact, pediatricians and other health care professionals, primary EDhealth care professionals, primary EDMajor chronic illnesses and disabilities, baseline Major chronic illnesses and disabilities, baseline physical and mental status, baseline vital signs, physical and mental status, baseline vital signs, physical findings and neurological status physical findings and neurological status Immunization history, medications, med allergies, Immunization history, medications, med allergies, food allergies, and advancedfood allergies, and advanceddirectives*directives*

(*Most states have advanced directives forms that need to be filled(*Most states have advanced directives forms that need to be filled out for EMS to honor.)out for EMS to honor.)



AAP/ACEP (cont.)AAP/ACEP (cont.)

Primary language and language constraintsPrimary language and language constraintsSignature and consentSignature and consentProstheses, appliances, and advanced Prostheses, appliances, and advanced technology devicestechnology devicesBaseline labs and other studiesBaseline labs and other studiesFoods to be avoided and procedures to be Foods to be avoided and procedures to be avoided and whyavoided and whyCommon presenting problems and findings Common presenting problems and findings with specific suggested managementswith specific suggested managements



Hitchcock Care PlanHitchcock Care Plan

NicknameNickname

Assets and strengthsAssets and strengths

Challenges (list behavioral, communication, Challenges (list behavioral, communication, sensory, stamina/fatigue, learning, etc.)sensory, stamina/fatigue, learning, etc.)

List of specific equipment and assistive techList of specific equipment and assistive tech

School system and child care School system and child care

Special circumstances/what would like to Special circumstances/what would like to knowknow



Palmetto Primary Care PlanPalmetto Primary Care Plan

Different approach to how to identify language Different approach to how to identify language spoken and communication concernsspoken and communication concerns

Requires pre-cert/authRequires pre-cert/auth

Family membersFamily members

Pharmacy and DME supplierPharmacy and DME supplier

Dose, time and route for meds and special Dose, time and route for meds and special formulaformula

Key community contactsKey community contacts



Registry: Care CoordinationRegistry: Care Coordination

Practices create a “list” with some info on CYSHCN Practices create a “list” with some info on CYSHCN to do care coordination by condition or issue to do care coordination by condition or issue

Practices and communities can use info to create a Practices and communities can use info to create a database system for emergency situations to access database system for emergency situations to access basic health information basic health information

Selected information on CSHCN from this “list” can Selected information on CSHCN from this “list” can be made accessible to EMS, health departments, be made accessible to EMS, health departments, hospital staff, SMAT, etc. hospital staff, SMAT, etc. with parental consentwith parental consent



KIDBaseKIDBase

KKids ids IInformation nformation DDatabase atabase AAccess ccess SSystem for ystem for EEmergenciesmergencies

What is it?What is it?

Who does it benefit?Who does it benefit?

How does it work?How does it work?

How can EMS use it in the community?How can EMS use it in the community?



What is KIDBase?What is KIDBase?

NC EMSC Program helps ensure that children NC EMSC Program helps ensure that children with special health care needs receive the with special health care needs receive the care they need in medical emergencies.care they need in medical emergencies.

A way to keep emergency medical care A way to keep emergency medical care personnel informed of the special needs of a personnel informed of the special needs of a special health care needs child so that special health care needs child so that appropriate and timely care can be providedappropriate and timely care can be provided



What is KIDBase?What is KIDBase?



How Does It Work?How Does It Work?

KIDBase brochure for familiesKIDBase brochure for families

KIDBase medical information formKIDBase medical information form

KIDBase enrollment postcard KIDBase enrollment postcard

KIDBase window cling for IDKIDBase window cling for ID



KIDBase Medical Information FormKIDBase Medical Information Form



KIDBase Medical Information FormKIDBase Medical Information Form




ScenarioScenario– 911 call involving child with a tracheostomy tube 911 call involving child with a tracheostomy tube

who is in respiratory distresswho is in respiratory distress– Dispatcher notifies local EMS, “This is a KIDBase Dispatcher notifies local EMS, “This is a KIDBase

child and he/she has an emergency care plan.”child and he/she has an emergency care plan.”– EMS arrives and asks for KIDBase form or other EMS arrives and asks for KIDBase form or other

portable medical summaryportable medical summary– Assists EMS with assessment and treatmentAssists EMS with assessment and treatment– Copy of KIDBase form or summary taken with Copy of KIDBase form or summary taken with

EMS for EDEMS for ED




ScenarioScenario– Who needs to be involved in the program to make Who needs to be involved in the program to make

this scenario work?this scenario work?

FamilyFamily Child’s primary care providerChild’s primary care provider Public Service Answering Point/DispatcherPublic Service Answering Point/Dispatcher EMS personnel - EMS Training OfficersEMS personnel - EMS Training Officers



How Does It Work?How Does It Work?Important component: Reach out to families Important component: Reach out to families of CSHCNsof CSHCNs– Exceptional Children’s Program, Family Voices, Exceptional Children’s Program, Family Voices,

non-profit children’s disease specific groupsnon-profit children’s disease specific groups– Pediatricians offices, family practice officesPediatricians offices, family practice offices– Neonatal intensive care unitsNeonatal intensive care units– Hospital social services departments, child life Hospital social services departments, child life

specialistsspecialists– Schools, child care, local health departments, Schools, child care, local health departments,

faith-based organizationsfaith-based organizations




Outreach resources available, NC EMSCOutreach resources available, NC EMSC– Parent/caregiver letterParent/caregiver letter– Primary Care Provider letterPrimary Care Provider letter– Dispatcher letterDispatcher letter– Community Based Services Agency letterCommunity Based Services Agency letter– FAQsFAQs– Promotion TipsPromotion Tips



How Can EMS Use This in The How Can EMS Use This in The Community?Community?

Convene meeting of stakeholders, i.e. folks in Convene meeting of stakeholders, i.e. folks in scenario, representatives of organizations who scenario, representatives of organizations who may be willing to do outreachmay be willing to do outreach

Provide materialsProvide materials

Do outreach to identify families to participateDo outreach to identify families to participate




How to get KIDBase materials?How to get KIDBase materials?

Gloria Hale, MPHGloria Hale, MPH

(919) 855-3953(919) 855-3953

[email protected]@ncmail.net

Downloadable on web: Downloadable on web: www.ncems.org/emsc/kidbase.htmlwww.ncems.org/emsc/kidbase.html




Web-based KIDBase medical information Web-based KIDBase medical information form is in interactive pdf formform is in interactive pdf form

KIDBase materials will also be in SpanishKIDBase materials will also be in Spanish

Remember that parents/caregivers are the Remember that parents/caregivers are the experts on their childexperts on their child



Questions?Questions?



ReferencesReferences

http://www.amchp.org/topics/a-g/emergency.php#defhttp://www.amchp.org/topics/a-g/emergency.php#def http://www.amchp.org/topics/a-g/emergency_trans.phphttp://www.amchp.org/topics/a-g/emergency_trans.phpCommittee on Pediatric Emergency Medicine. Emergency Preparedness for Children with Special Health Care Needs. Pediatrics 1999;104;e53PEDIATRICS Vol. 117 No. 2 February 2006, pp. e340-e362 PEDIATRICS Vol. 117 No. 2 February 2006, pp. e340-e362 PEDIATRICS Vol. 116 No. 3 September 2005, pp. 787-795 PEDIATRICS Vol. 116 No. 3 September 2005, pp. 787-795 http://ncchildcare.dhhs.state.nc.us/general/mb_contact.asp http://ncchildcare.dhhs.state.nc.us/general/mb_contact.asp



ResourcesResources

www.redcross.orgwww.redcross.orgwww.mass.gov/eohhs/MassSupportwww.mass.gov/eohhs/MassSupportThe State of Florida Family Preparedness Guide: The State of Florida Family Preparedness Guide: www.doh.state.fl.us/rw_webmaster/prepareenglish04www.doh.state.fl.us/rw_webmaster/prepareenglish042.pdf2.pdfwww.childhealthdata.org www.childhealthdata.org

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

http://client.blueskybroadcast.com/AAP/AAP_Peds_2http://client.blueskybroadcast.com/AAP/AAP_Peds_21/index.html1/index.html



Thank You!Thank You!

Gloria Hale, North Carolina Office of Gloria Hale, North Carolina Office of EMS, EMS-C Coordinator EMS, EMS-C Coordinator


Gerri Mattson, MD, MSPHGerri Mattson, MD, MSPHPediatric Medical Consultant,Pediatric Medical Consultant,

Children and Youth Branch, North Children and Youth Branch, North Carolina Division of Public HealthCarolina Division of Public Health


Documents

Emergency Care Plans for Children with Special Needs