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Emergency Care Plans for Children with Special Health Care Needs. 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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Emergency Care Plans for Children with Special Health Care Needs
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
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 (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
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)
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
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: Many Conditions • Respiratory conditions • Cardiac conditions • Endocrine disorders • Genetic disorders • Hematology and cancer disorders • Immune disorders • Kidney disorders
More Conditions • Metabolic disorders • Severe food allergies • Neurological disorders • Developmental disorders • Mental health disorders And the list goes on……
Common Themes Across Conditions • 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 basis
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
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
Some Helpful Responses • Identifying children with special needs • Generating a portable medical summary • Including these children in registries for care coordination
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
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, 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.)
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
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
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
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
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?
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
How Does It Work? • KIDBase brochure for families • KIDBase medical information form • KIDBase enrollment postcard • KIDBase window cling for ID
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
How Does It Work? • Scenario • Who needs to be involved in the program to make this scenario work? Family • Child’s primary care provider • Public Service Answering Point/Dispatcher • EMS personnel - EMS Training Officers
How Does It Work? • Important component: Reach out to families of CSHCNs • Exceptional Children’s Program, Family Voices, non-profit children’s 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
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
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
How Can EMS Use This in The Community? • How to get KIDBase materials? Gloria Hale, MPH (919) 855-3953 gloria.hale@ncmail.net • Downloadable on web: www.ncems.org/emsc/kidbase.html
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
References • 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. Pediatrics 1999;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
Resources • 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
Thank You!Gloria Hale, North Carolina Office of EMS, EMS-C Coordinator gloria.hale@ncmail.net Gerri Mattson, MD, MSPHPediatric Medical Consultant,Children and Youth Branch, North Carolina Division of Public Healthgerri.mattson@ncmail.net