- 1. Planning for Disasters for Children with Special Needs
2. 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.
3. Some Numbers from the National Survey of CSHCN
- 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
4. Children are more vulnerable
- Skin is thinner and larger surface to mass ratio
- Inhale larger doses in same period of time
- 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
5. CYSHCN: Condition Specific Concerns
- 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
6. Condition Specific Concerns (cont.)
- 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
7. Condition Specific Concerns (cont.)
- 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
8. Condition Specific Concerns (cont.)
- 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
9. Families and CYSHCN Marlyn Wells Family Liaison Specialist
10. Disaster Planning for Families
- All want assurances our families are safe
- 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.
11. Disaster Planning for Families
- Families and Providers Determine Necessary Needs and Supports
in Addition to
12. Disaster Planning for Families
- Safely stockpile, in addition to extra medicines
-
- Music player, preferred food choices, clothing, etc.
-
- Communication board or systems,calming objects, etc.
-
- Catheters, IV tubing, dressings, ostomy supplies, etc.
-
- Diapers, communication systems, toys, clothes, etc.
-
- Wheelchair, crutches, braces, slings, etc
13. Disaster Planning for Families
- 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.
14. Disaster Planning for Families
- 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:
- GrandparentsOther Relatives
- Day CareNursery/Preschool
- Head StartFamily Day Care
- Non-relative in Other HomesNon-relative in Childs Home
- SportsEnrichment Activities
- No ArrangementsMultiple Arrangements
15. Disaster Planning for Families
- 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
16. Schools and Child Care Settings Jessica Gerdes, RN, MS, NCSN
Lead State School Health Nurse Consultant 17. Some Numbers..
- 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)
18. Schools addressing chronic health care needs
- 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
19. Schools addressing mental health care needs
- 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
20. Child Care Centers
- 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
21. In the event of emergencies in schools and child care
facilities
- 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
22. The Keys to Successful Outcomes
23. Institutions and Residential Treatment Facilities Kim
Symonds, RN Director of Nursing Tammy Lynn Center for Developmental
Disabilities 24. Residential Facilities in NC
- 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
- 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
25. Who are these children?
- Children living in many residential facilities are there
because of medical fragilities that can no longer be handled in the
home.
-
- 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
26. Evacuation
- 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
27. Evacuation
- 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
28. Medical Information to accompany each child during
evacuation
- 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
29. How EMS can help
- 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
30. A Priority for Health Care Providers Gerri Mattson, MD, MSPH
Pediatric Medical Consultant 31. Partnering With Families To
- 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
32. Portable Medical Summary
- 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
33. 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 and lab studies
- Immunization history, medications, med allergies, food
allergies, and advanced
- (*Most states have advanced directives forms that need to be
filled
34. Registry: Voluntary Database
- 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
35. Disaster Preparedness Plans/Drills
- 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
36. Additional Considerations.
-
- 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
37. 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.
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
38. Resources
- www.mass.gov/eohhs/MassSupport
- The State of Florida Family Preparedness Guide:
www.doh.state.fl.us/rw_webmaster/prepareenglish042.pdf
- http://www.aap.org/advocacy/emergprep.htm
-
http://client.blueskybroadcast.com/AAP/AAP_Peds_21/index.html
39. ThankYou! Questions for the panelists???