E.K. Shriver Center Emergency Preparedness/Response Projects

AUCD NCBDDD Health Grantees

Emergency Preparedness Call

September 1, 2011

Sue Wolf-Fordham, J. D., Senior Project Manager

E.K. Shriver Center, University of MA Medical School 1

Online Survey: Parents of Children with Disabilities & Emergency Preparedness

Hypothesis: Families affected by disability/SHCN aren’t well prepared for emergencies

Research Objectives: •Self-assessment of preparedness

•Assessment based on key preparedness steps

•Perception of EP importance; training and support needs

Goal: Develop intervention to increase family resilience

2

Funded by the University of Massachusetts Medical School and through a grant from the

Administration on Developmental Disabilities

Method

• Survey Monkey online survey to parents of children with disabilities/SHCN (0-21 years old)

• Convenience sample

• IRB exemption

• Survey Dates: January-March, 2009

• Final analysis include 314 respondents of children 1-21 from 35 states

• Disability = Developmental disability/delay, intellectual disability, and/or Autism Spectrum Disorder w/ or w/o another condition

3

Shriver Parent EP Survey

15%

26.0%

39%

14%

5 %

0

20

40

60

80

100

120

140

1 Very Unprepared

2 3 4 5 Very Prepared

Nu

mb

ers

of re

sp

on

de

nts

Self- Assessed Preparedness Level

Approx. 37% reported experiencing emergency or disaster

Majority self-assessed a “medium” level of preparedness

(mean=2.7) 4

Number of Preparedness Steps Taken By Preparedness Level

1.2 1.8

3.2

4.3 4.7

0123456789

1011

1 VeryUnprepared

2 3 4 5 VeryPrepared

Mean

nu

mb

er

of

ste

ps

Preparedness Levels

5

Even most prepared took less than half the recommended number of steps

Implications & Limitations

• Implications: – Parents of children with disabilities aren’t as prepared as

they could be

– Design training: (1) 99% of respondents: training is “very important” or “important;” (2) Supports: talking with an expert; help recording plan; help implementing plan; visit a shelter; advance meeting with emergency managers

• Limitations: Convenience sample

Sample limited to those with computer + internet access

Sample limited to those with English proficiency

Weighted heavily toward MA residents (~39%)

Survey didn’t address quality of EP steps taken

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Emergency Preparedness Training for Parents of Children with Disabilities

• Pilot: In-person training

• Toolkit: Resource Notebook, Family Emergency Plan template (hard copy + flash drive), PowerPoint® slides

• Development: Collaboration w/ parents + responders; geared to broad reading audience

• Focus: “What if” thinking and planning & sharing “need to know” information

• Goal: For parents to leave the training with at least a portion of a written emergency plan

• Evaluation: Statistically significant gains in knowledge, self-efficacy and response efficacy; majority finished at least ¾ of their plans

Funded through a research award from the Deborah Munroe Noonan Memorial Research Fund,

Bank of America, N.A., Trustee 7

FILL OUT 1ST FILL OUT 2ND

8

Emergency Information Form

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Example: Emergency Information Form Instructions

and Checklist

1. Autism: easily overwhelmed by sensory input (bright lights like police car lights, loud noises like sirens,

strong smells, crowds) which may cause him to panic; doesn’t understand other people’s facial expressions;

may run toward danger such as fire or a body of water.

2. Generally compliant but has trouble understanding and may be slow to follow directions.

3. Needs to have his green stuffed bear with him at all times for comfort.

4. Can walk independently; has some problems handling small things with his hands.

5. Flaps his hands when upset. Don’t try to stop him when he is doing this; this calms him.

Communication: Spanish and some English; speech not always clear, speaks slowly and sometimes off-topic; may repeat what you say or repeat one word over and over again to calm himself. Don’t try to stop him.

Key personality characteristics: Makes lots of non-speech sounds; generally content; doesn’t show different facial expressions. When upset may scream. Talk slowly and calmly to him. Don’t touch him unless

absolutely necessary. Give him time to adjust to new situations as much as possible.

Key signs of normal function: Walking in circles, shaking his head back and forth, talking to himself.

Potentially life threatening conditions: None

Conditions needing constant attention/supervision: Needs almost constant supervision from caregiver.

Medicine: __X_N/A ____Takes medicine. See separate list on Medical Information Form.

Life sustaining medicines: OK for my child to skip a dose of these medicines:

Medical or adaptive equipment: _X_ N/A ____Uses specialized equipment. See equipment list on Medical

Information Form.

Special diet __X_N/A ____See diet info on Medical Information Form.

My child ___X_is ____ is not wearing a Medical Alert. Medic Alert attached to left shoe.

Planning documents for life threatening condition: N/A

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Example: Emergency Information Form Critical Information Box

Training for Self-Advocates with ID/DD

• Design: Collaboration with a self-advocate

who now leads the trainings. Built off a ME curriculum (SUFU).

• Topics covered

• Trained over 200 people with ID/DD

• Developed DVD

• Local ARC Emergency Preparedness Day

• Audience expanded to include people with head injury; provider agency staff; DDS staff; DDS Training Council meetings; DD Council

11 Funded by the University of Massachusetts Medical School and through a grant from the Administration on Developmental Disabilities

Example: What can happen if you lose heat or

electricity?

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LEND Fellow Emergency Preparedness (EP) Day

• Annual full day training for federally funded graduate LEND fellows

• Components: lecture; panel discussion and lunch; simulation

• Themes: – EP as public health issue – Potential vulnerabilities and strengths of disability

community in emergencies – Preparedness as a health behavior – Individual and family preparedness – Provider agency preparedness – Public policy: disparity/equity

13 Funded through a grant from the Administration on Developmental Disabilities

Example: LEND Fellow Simulation

1. Pick a role; divide into teams

2. Watch PPT w/ “TV broadcasts, ” “decision points”

3. After team discussion, make decisions based on role and team

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Decision Point: There is A Mandatory Evacuation

Order: What Do You Do?

• Do you evacuate at this time? Why or

why not? • If yes, how do you decide where to go? • How do you find out about a local mass

care shelter? • Will the shelter be accessible? • If you don’t evacuate what will you do? • Will responders come to get you later if

you need help? • Responder interaction: Taking a

wheelchair

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CEEPET Online Course for Healthcare First Responders

• Project: Develop an online training about emergencies/disasters and people with disabilities

• Audience: Health care personnel, EMS, long term care facility personnel, community health center personnel

• UMMS Center of Excellence for Emergency Preparedness and Training (CEEPET) project http://ceepet.org/accounts/110/homepage/

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CEEPET is supported through a contract with the Emergency Preparedness Bureau at the

Massachusetts Department of Public Health, with funding from the Assistant Secretary for

Preparedness and Response (ASPR) Hospital Preparedness Program

Active Planning for Mass Care Sheltering and Evacuation of People with Disabilities

• Need: Eliminate lack of communication between local response and disability communities; close gaps in emergency plans and planning

• Project: (1) Develop and implement in-person training for local

emergency response personnel (2) Develop and implement Community Forum for

local emergency response personnel + disability community to share information and review local emergency plan

Funded through a grant from FEMA through the MA Department of Public Safety. This document

was prepared under a grant from FEMA’s Grant Program’s Directorate, U.S. Department of

Homeland Security. Points of view expressed in this document are those of the author and do not

necessarily represent the official position or policies of FEMA’s Grant Programs Directorate or the

U.S. Department of Homeland Security.

Active Planning

Develop tools for local plan review: local needs assessment, gap analysis, gap closing tools for use at Community Forum

Audience: Local emergency personnel + local disability community

Design: Volunteer stakeholder collaboration

Review committee with local responders/managers/disability community members

Pilot + feedback discussion

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Hazmat/Radiation Decontamination Drill Consultation

• US hospitals required to hold drills

• Decontamination process not designed with people with disabilities/SHCN in mind

• Shriver Center volunteer “victims” help responders practice; provide feedback about equal access & accommodations

• Link to UMASS Memorial drill and related press and video

http://www.umassmed.edu/news/education/2011/emergency-preparedness-drills.aspx

Funded through a grant from the Administration on Developmental Disabilities 19

NASDDDS Online Emergency Planning Tool

http://rtc.umn.edu/erp/main/

Shriver Center participation in this project funded through the Massachusetts Executive

Office of Health and Human Services 20

Cross-Disability Collaboration

Massachusetts Task Force on Emergency

Preparedness and People

Requiring Additional Assistance

Available on the Massachusetts Office on Disability website

http://www.mass.gov/?pageID=afmodulechunk&L=4&L0=Home&L1=Employment

%2c+Equal+Access%2c+Disability&L2=Oversight+Agencies&L3=Massachusetts+

Office+on+Disability&sid=Eoaf&b=terminalcontent&f=mod_community_erprepared

ness&csid=Eoaf

Shriver Center participation funded through the University of Massachusetts Medical

School and through a grant from the Administration on Developmental Disabilities

Sue Wolf-Fordham, J.D.

E.K. Shriver Center/UMASS Medical School

200 Trapelo Rd.

Waltham, MA 02452

Susan.Wolf-Fordham@umassmed.edu

(781) 642-0275

http://www.umassmed.edu/shriver/service/emergency-preparedness-initiative.aspx

Contact Information

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Acknowledgements

• Linda Bandini, PhD • Robert Bass, PhD • John Broach, M.D. • Carol Curtin, MSW • Patrick Gleason, M.A. • Charles Hamad, PhD • Lynda Kahn, M.A. • Charmaine Lo, M.P.H. • Mary-Elise Manuell, M.D.,

M.A., FACEP • Melissa Maslin, M.Ed.

• Erin McGaffigan, M.A., MSW

• Teresa Mitchell, PhD • Timothy Moloney, MSEM

John Rochford, M.S. • Nancy Shea, J.D. • David Stowe, MSEM • Nathaniel Trull, Self-

Advocate • Lee Vorderer, M.A.

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Larger Print Version of Slide 10: Critical Information Box (in 4 slides)

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Larger Print Version of Slide 10 (1 of 4 slides) The most critical information to know about my child is:

1. Autism: easily overwhelmed by sensory input (bright lights like police car lights, loud noises like sirens, strong smells, crowds) which may cause him to panic; doesn’t understand other people’s facial expressions; may run toward danger such as fire or a body of water.

2. Generally compliant but has trouble understanding and may be slow to follow directions.

3. Needs to have his green stuffed bear with him at all times for comfort.

4. Can walk independently; has some problems handling small things with his hands.

5. Flaps his hands when upset. Don’t try to stop him when he is doing this; this calms him.

25

Slide 10, Part 2

Communication: Spanish and some English; speech not always clear, speaks slowly and sometimes off-topic; may repeat what you say or repeat one word over and over again to calm himself. Don’t try to stop him.

Key personality characteristics: Makes lots of non-speech sounds; generally content; doesn’t show different facial expressions. When upset may scream. Talk slowly and calmly to him. Don’t touch him unless absolutely necessary. Give him time to adjust to new situations as much as possible.

Key signs of normal function: Walking in circles, shaking his head back and forth, talking to himself.

Potentially life threatening conditions: None

Conditions needing constant attention/supervision: Needs almost constant supervision from caregiver.

Slide 10, Part 3

Medicine: __X_N/A ____Takes medicine. See separate list on Medical Information Form.

Life sustaining medicines:

OK for my child to skip a dose of these medicines:

Medical or adaptive equipment: _X_ N/A ____Uses specialized equipment. See equipment list on Medical Information Form.

27

28

Special diet __X_N/A ____See diet info

on Medical Information Form.

My child ___X_is ____ is not wearing a

Medical Alert. Medic Alert attached to left

shoe.

Planning documents for life threatening

condition: N/A

Slide 10, Part 4