Disaster Preparedness Advocacy for Special Needs Children and Families

7/29/2019 Disaster Preparedness Advocacy for Special Needs Children and Families

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Advocacy Morning Report

Benjamin Dowse, PGY1


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Example Case

3 yo girl with complex medical history:

DiGeorge syndrome, 22q11 deletion [athymic, SCID,interrupted aortic arch type B, VSD, large PDA, smallLVOT s/p Yasui repair, Hypocalcemia,Hypoparathyroidism]

SCID s/p BMT matched sibling donor 5/12

Trach dependence

Fungal colonization Failure to thrive, GJ tube dependent

Currently doing well at home


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Technology Dependent Children

Any child who requires some item of

technology to stay alive

Not necessarily minute-to-minute (pump

dependence), although it can be (ventilator

dependence)


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So what happens with these children

when

A Natural Disaster like an Earthquake happens

OR


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Disasters

Earthquakes

Flooding

Tornado

Snow (freak 4 foot snowfall)

Shooting

Terrorism

Economic/government collapse

Cyberwarfare

http://community.seattletimes.nwsource.com/archive/?date=19930124&slug=1681641


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Preparedness

The National Center for

Disaster Preparedness

less than half the general

public has an emergencyplan

only one-third felt

prepared for a disaster.

Despite public health

education efforts and

mass media coverage of

disasters, levels ofdisaster preparedness

appear to have changed

little over time.

Baker LR, Cormier LA. (2012). Disaster Preparedness and Families of Children with

Special Needs: A Geographic Comparison. J Community Health, Jul 22. [Epub ahead

of print].


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Preparedness

ESPECIALLY Important when children with specialhealth needs and/or disabilities are involved!

A disastrous event often involves the loss ofelectrical power.

All critical life-support devices should include aninternal battery back-up, a power-failure alarm, and a

secondary means of back-up power. Lack of access to medications, water, food, shelter,

and transportation should also be considered.


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What can we do to

help our patients tobe prepared?

Talk to allfamilies

about family disaster plans

especiallythose withtechnology-dependent

children.

information and forms that parents can print and use at

www.ready.gov

FEMA: Federal Emergency Management Agency Dr.CharlesLau

ghead
http://www.ready.gov/http://www.ready.gov/


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What can we do to help our patients

to be prepared?

However, for complicated, technology

dependent children, this may not be enough

information.

Policy Statement in Pediatrics in 2010

regarding Emergency Information Forms and

Emergency Preparedness for Children With

Special Health Care Needs

American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and Council on Clinical Information Technology,

American College of Emergency Physicians and Pediatric Emergency Medicine Committee. Emergency Information Forms and

Emergency Preparedness for Children With Special Health Care Needs. Pediatrics 2010;125;829; originally published online March 29,

2010;


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to be prepared?

Philip Chaffe, Emergency Manager forUniversity of Utah hospitals:

Many neighborhoods have systems of door

tagging in the event of a disaster. Ask parents of technology dependent children if

they know of this system and encourage them toget involved in advocating for their children.

Medical alert door tags for rescuers are yet to bedeveloped, but may be helpful in suggesting to firedepartments and police that there are special needs tobe met in those homes.


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We can advocate for this!

All families should have 96 hour kits at home which

should include food, clothing,water, bedding, first aid, etc.

easy to find good

comprehensive lists online Appropriate to bring up as

part of anticipatory guidanceat well visits.

FAMILIES with a SPECIAL

NEEDS CHILD NEED TORECOGNIZE THAT Rescuers may not be able to

bring help even to specialneeds kids for several days!


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to be prepared?

Other important considerations

Communication

Cellular/land line/internet backup systems

Emergency radios

Phone lists

Out of town contacts

Emergency transport plan

Power backup plan

Generator

Extra batteries


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Case Study

During routine visits, our complex 3 year olds

PCP can take the opportunity to advocate for

her well being in the case of a catastrophe:

Help her parents to complete emergency forms

and have a family plan in place

Help parents learn how to advocate for her in

neighborhood emergency planning Help parents plan to include her needs in a 96

hour kit


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Acknowledgements

Thanks to Dr. Chuck Pruitt and PhilipChaffe for their help and support


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References

Baker LR, Cormier LA. (2012). Disaster Preparedness and Families of Children withSpecial Needs: A Geographic Comparison. J Community Health, Jul 22. [Epubahead of print].

Emergency Preparedness 7.1 Packaging Wisdom: A Family Centered CareCoordination Notebook Wyoming Family 2 Family Health Information Center

American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and

Council on Clinical Information Technology, American College of EmergencyPhysicians and Pediatric Emergency Medicine Committee. Emergency InformationForms and Emergency Preparedness for Children With Special Health Care Needs.Pediatrics 2010;125;829; originally published online March 29, 2010;

What to Do, EXACTLY, in a Disaster Affecting Our ED talk by Doug Nelson, MD.

http://community.seattletimes.nwsource.com/archive/?date=19930124&slug=1681641

Ready.gov YouTube.com

http://livewellutah.org/files/uploads/Emergency_72_96_hours.pdf

http://www.chrisjohnsonmd.com/2008/08/13/technology-dependent-children/

Documents

Disaster Preparedness Advocacy for Special Needs Children and Families