Emergency Preparedness in a Sample of Persons with Disabilities

1. Emergency Preparedness in a Sample of Persons with Disabilities PAS Center July 23, 2013 Robyn Gershon, MHS, DrPH Philip R. Lee Institute for Health Policy Studies University of California, San Francisco

2. Acknowledgements Co- Authors • Lewis Kraus • Victoria Raveis • Martin Sherman • June Kailes • Funding provided by NIDRR

3. Introduction • Study to characterize emergency preparedness in a convenience sample of 253 community residents with cognitive and/or physical disabilities • All received some form of personal assistance services • Cross section web-based survey • Main outcome measure was Emergency Preparedness, measured using a 7-item construct.

4. Background Info • Disaster events are increasing. • General community-level preparedness still remains suboptimal. • Data, while sparse, indicate that persons with disabilities may be similarly sub-optimally prepared. • Persons with disabilities are known to have higher rates of morbidity and mortality associated with disaster events. • There is also an increase in adverse outcomes in the post event phase (e.g., loss of housing) in the post-event phase.

5. Background Info • To improve community response to disaster events- large investments have been made over the past decade. • Yet, overall rates of preparedness of general public remain sub-optimal • Recent surveys indicate that only 20-30% of the public has even the basic elements of preparedness (evacuation plan, “go-bag”, supplies of food and water, battery operated radio, etc.)

6. Background Info • Preparedness planning within the disability community is equally sub-optimal: • A 2009 study found that only 26% of participants reporting a disability were “very prepared” for an emergency, 53.3% were “somewhat prepared”, and 21% were “not at all prepared” • Another study found that while persons with transportation-related special needs were more likely to have located a shelter or packed a go bag compared to people without a disability- • they were no more likely to have food/water supplies on hand, know evacuation routes, have an emergency plan, or intend to evacuate – even under government order

7. Background Info • Similarly preparedness of home health and personal care agencies is problematic • 2012 study of agencies showed planning and response capabilities was very limited • Default position of most agencies: “expect to have clients’ families and local emergency responders assist their clients when necessary” • Preparedness at the individual care giver level also very limited • 2010 survey of care givers found that: • 57% of caregivers (N=374) were unwilling to report to duty to client home during a disaster • 62% had competing obligations that would make this difficult

8. Study Rationale To improve our understanding of preparedness in persons living with a disability: • To determine degree of preparedness in a convenience sample of persons living with a disability • To identify factors associated with preparedness/lack of preparedness • To determine the role of past emergency events on level of preparedness

9. Methods • Survey was developed with input • Advertised on list serves • 6 week data collection summer 2011 • Analyzed using SPSS • Inclusion criteria: disability status, receipt of PA services • 37-item questionnaire • Four domains: • Demographics • Disability and care-giver status • Emergency preparedness elements • Prior emergency experience

10. Emergency Preparedness Planning Elements • Personal emergency plan • Evacuation plan • Go-bag with critical items (meds, supplies) • Emergency back up supplies in home (food, water, batteries) • Communication plan for contacting PA • Emergency Contacts List • Back up plan for personal assistance

11. Results • Demographics • 67% white • 49% females • 12% Hispanic • Mean age 48yrs, mode 55yrs, range 8-87 • Disability status • 69% mobility • 14% vision • 5.5% hearing • 59% ADL difficulties • 59% serious difficulties with bathing, dressing • 53% required help with chores, errands • 21% difficulties in concentrating, remembering, making decisions

12. Results • Personal care assistance status • 20% >40hrs a week of PAS • 24% < 8hrs a week of PAS • 40% hired their own, 28% thru govtagency, 14% private agency, 6% other source

13. Results • Emergency preparedness planning • 7-tems: (range= 0-7), mean=2.32, mode=0, Cronbach=.93 (1) 47% had an emergency plan, of these, 63% had involved PA in the plan, 15% shared with all PAs • Reasons for “not sharing”: “PA will be busy with own family,” PA is not that dependable,” “I might not be with PA during an emergency,” “Experience tells me I cannot count on them,” “She is not family” • Of those that developed plan with PA- overall score on EP was significantly greater (2) 35% had an evacuation plan (3) 28% had prepared a go-bag (4) 32% had emergency supplies in house (5) 29% had a way to communicate with PA (cellphones, landlines, text, emails, social network, pager, two-way radio, ham radio) (6) 34% had an Emergency Contacts List (7) 26% had made back- up plans for PA

14. Results • Prior emergency event experience was significantly associated EP (OR= 4.42, 95% CI 2.45-7.99) • 63% had one or more such experiences • Natural disaster: storms (28%), hurricanes (20%, earthquakes (11%), tornadoes (8%), tsunamis (4%), cold waves (4%). • Fires (11%) • Terrorist attacks (1%) • Warnings • No warning 38% • Short warning:29% • At least a day 29%

15. Results • During past emergency event • PA assistance • 62% PA was with them (most stayed) • 28% PA came later (several hours to days later) • - Other sources of help • Family (including young children, National Guard, FEMA, fire department, state school for blind, etc.) • - Other details • 61% were able to stay at home due to preplanning • Some said they were forced to stay due to lack of preplanning • If evacuated off site: • Shelters (6%), other locations (hotels, family, friends, fire station, military base, PA home)

16. Results • Community issues: • Only 21% reported that their community had an early warning alert system in place • 14% were unsure if such a system was in place • Only 1 person reported that they had been involved in community emergency drills.

17. Changes and Recommendations Made Based on Past Emergency Experience Results • Made changes to “go-bag” (money, meds, list of meds, important documents) • Made a relocation plan (including plan for pets, wheelchairs, shelters in area) • Made changes to home (generator, back up plan for PA, landline)

18. Participants’ Recommendations to Other People with Disabilities • Let local fire department know you may need assistance • Have several back up plans for PA • Write out your plan and keep it updated • Always communicate your plan to all PAs • Hire PAs who agree with your plan • Practice and drill your plan • Know your local community's emergency plan and where shelters are located • Share your plan with the agency and make sure they agree to it • Train others in your special care needs (e.g., feeding tube) • Have your own supplies and equipment ready to take to relocation • Have at least two transportation options • Heed the emergency alerts and weather advisories • Stay calm and have patience!

19. Conclusions • Suboptimal preparedness documented. • Involving PA and having had disaster experience does seem to result in higher emergency preparedness scores. • Disconnect between agencies and individuals’ preparedness. • Many resources available for advice - but where will resources come from? • Inclusion of persons with a disability in community level preparedness is the best approach for ensuring appropriate assistance.

20. Thank You For more information, please contact: Robyn Gershon or Lewis Kraus Robyn.gershon@ucsf.edu or deputy@adapacific.org