Emergency Care Plans for Children with Special Health Care Needs

1. Emergency Care Plans for Children with Special Health Care Needs

2. 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

3. 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.”

4. 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

5. 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)

6. 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

7. 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

8. CYSHCN: Many Conditions • Respiratory conditions • Cardiac conditions • Endocrine disorders • Genetic disorders • Hematology and cancer disorders • Immune disorders • Kidney disorders

9. More Conditions • Metabolic disorders • Severe food allergies • Neurological disorders • Developmental disorders • Mental health disorders And the list goes on……

10. 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

11. 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

12. 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

13. Some Helpful Responses • Identifying children with special needs • Generating a portable medical summary • Including these children in registries for care coordination

14. 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

15. 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.)

16. 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

17. 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

18. 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

19. 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

20. 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?

21. 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

22. What is KIDBase?

23. How Does It Work? • KIDBase brochure for families • KIDBase medical information form • KIDBase enrollment postcard • KIDBase window cling for ID

24. KIDBase Medical Information Form

25. KIDBase Medical Information Form

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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

33. Questions?

34. 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

35. 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

36. 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