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Dynamic Community Partnerships with Disability Stakeholders –
Practical Approaches to Engagement with Emergency Management, Public Health, and VOADs
EnableUS Conference - Philadelphia - September 2009
Maggie Kare-Elestwani, RN ● Lex Frieden
Texas Collaborative for People with Disabilities
Dynamic Community Partnerships with Disability Stakeholders
Over a long distance, you learn about the strength of your horse; over a long time, you learn about the character of your friend.
-Asian Proverb
If we are together nothing is impossible.
-Winston Churchill
Dynamic Community Partnerships with Disability Stakeholders
Humanitarian Response to Complex Geographic Settings (HRCGS)
Novel Influenza A (H1N1) – the Challenge A (H1N1) and the Disability Connection -
Wellness and Health A (H1N1) At-Risk Disability Overlap A (H1N1) Personal and Community Preparedness and
Response Essential Collaboration – Initiatives and Reports Dynamic Community Partnerships
Outline
Dynamic Community Partnerships with Disability Stakeholders
Novel A (H1N1) -
Where are we on the HRCGS all hazards map?
Humanitarian Response in Complex Geographic Settings(HRCGS), (Elestwani, 2008)
All Hazards Threat Cascades
Tactical Response Filter
Population Filter-Dynamic Location-Demographics-Dynamic Wellness and Health Status-Logistics/Network
Collaborative Command
& Control –
NRF/NIMS
Complexity/ Human Factors Filter(Deconstruction of Murphy’s Law)
Includes: Emergence – Competition & Cooperation – Pattern Formation including Self-organizing Behavior, Scale of Complexity – Interdependence – Scale of Behavior by individual/group/agency, Complexity Description, Evolution (change over time, i.e., hierarchical, horizontal, strike team, self& immediate group)
Collaborative, Integrated Incident Response
=Temporary partial to complete support of Med CI
with components 1-8
* Pre-existing Unified Command
Medical CI
Expanding Incidents):
Geo/ Time/ Threat/
Response
Dynamic Community Partnerships with Disability Stakeholders
http://www.cdc.gov/H1N1FLU/
Novel Influenza A (H1N1) – the Challenge
Dynamic Community Partnerships with Disability Stakeholders
Novel Influenza A (H1N1) – Illness/ Morbidity
Percentage of Visits for Influenza-like Illness (ILI) Reported by the U.S. Outpatient Influenza-like Illness Surveillance Network (ILINet), National Summary 2008-2009 and Previous Two Seasons
(Posted August 28, 2009, 6:00 PM ET, for Week Ending August 22, 2009)
Dynamic Community Partnerships with Disability Stakeholders
Total U.S. 2009 H1N1 Flu Hospitalizations and DeathsPosted September 4, 2009, 11:00 AM ETData reported to CDC by September 3, 2009, 9:00 AM ET
Reporting States and Territories*53
Hospitalized Cases 9,079
Deaths593
*Includes the District of Columbia, American Samoa, Guam, Puerto Rico and the U.S. Virgin Islands.
The number of hospitalized 2009 H1N1 cases and deaths presented in this table are an aggregateof reports received by CDC from U.S. states and territories and will be updated weekly eachFriday at 11am. For state level information, refer to state health departments.
Novel Influenza A (H1N1) – Hospitalizations and Deaths/ Mortality
Dynamic Community Partnerships with Disability Stakeholders
Healthy People 2010 Objectives for People with Disabilities
http://www.cdc.gov/ncbddd/dh/hp2010.htm
H1N1 Disability Connection - Wellness
Dynamic Community Partnerships with Disability Stakeholders
Medicare Adult Diagnoses Medicare Pediatric Diagnoses CSHCN Diagnoses
H1N1 Disability Connection – Primary Conditions
Dynamic Community Partnerships with Disability Stakeholders
A generally understood and clinically applicable definition of secondary conditions is still in development.
Secondary conditions have been defined as "Those physical, medical, cognitive, emotional, or psychosocial consequences to which persons with disabilities are more susceptible by virtue of an underlying condition, including adverse outcomes in health, wellness, participation, and quality of life" (Hough, 1999, p. 186).
“Although some secondary conditions can be prevented or decreased by a combination of health maintenance practices, removal of environmental barriers, and improved access to effective medical care, others are inevitable components of certain types of disabilities and can be managed but not prevented. Some of the more common secondary conditions include depression, hypertension, chronic pain, skin sores, fractures, contractures, urinary tract infections, respiratory infections, unwanted weight gain, excessive fatigue, and social isolation” (Simeonsson & McDevitt, 1999 book).
-M. Nosek, BCM CROWD
H1N1 Disability Connection – Secondary Conditions
Dynamic Community Partnerships with Disability Stakeholders
A (H1N1) and Disability – Venn Diagram
A (H1N1)
At-Risk
Groups
Disability and DisabiltyHealth
A (H1N1)
At-Risk
Disability Overlap
Dynamic Community Partnerships with Disability Stakeholders
http://www.flu.gov/
A (H1N1) – Personal Preparedness
Dynamic Community Partnerships with Disability Stakeholders
Surveillance/ Monitoring for Illness Vaccination Promotion of non-vaccination community
hygiene Promotion of other non-vaccination community
measures like social distancing depending on the Pandemic Severity Index (PSI)
Collaborative Response
A (H1N1) – Community Preparedness and Response
Dynamic Community Partnerships with Disability Stakeholders
http://www.nod.org/index.cfm?fuseaction=Page.viewPage&pageId=1564
Emergency Preparedness Initiative (NOD)
Dynamic Community Partnerships with Disability Stakeholders
http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm
Saving Lives (NCD)
Dynamic Community Partnerships with Disability Stakeholders
Effective Emergency Management: Making Improvements for Communities and
Individuals with Disabilities
http://www.ncd.gov/whatsnew.htm
NCD 2009 - Collaborative Emergency Preparedness Report – a Menu
Dynamic Community Partnerships with Disability Stakeholders
Approach: Practical, Familiar, and Friendly
First Task – Collaborative Collaborative Team Training Build a Strategy of Working Relationships Together Train Together Exercise Together Communicate to the Disability Community How to
Prepare Together Communicate & Celebrate Success!
Dynamic Community Partnerships with Disability Stakeholders
Scale (Local, county, state, territory, tribal nation, nation)
Geography Community Mosaic Socioeconomics How you work together – the Bottom Line
Every Community is Individual
Dynamic Community Partnerships with Disability Stakeholders
Come together as a collaborative (emergency management – public health – VOADs – disability stakeholders – other stakeholders)
Identify community issues Identify all hazards issues Look at “the menu” of approaches Set collaborative goals
First Task – Collaborative Goal-setting
Dynamic Community Partnerships with Disability Stakeholders
What’s after Novel A (H1N1) -
What would your collaborative like to tackle next?
Humanitarian Response in Complex Geographic Settings(HRCGS), (Elestwani, 2008)
All Hazards Threat Cascades
Tactical Response Filter
Population Filter-Dynamic Location-Demographics-Dynamic Wellness and Health Status-Logistics/Network
Collaborative Command
& Control –
NRF/NIMS
Complexity/ Human Factors Filter(Deconstruction of Murphy’s Law)
Includes: Emergence – Competition & Cooperation – Pattern Formation including Self-organizing Behavior, Scale of Complexity – Interdependence – Scale of Behavior by individual/group/agency, Complexity Description, Evolution (change over time, i.e., hierarchical, horizontal, strike team, self& immediate group)
Collaborative, Integrated Incident Response
=Temporary partial to complete support of Med CI
with components 1-8
* Pre-existing Unified Command
Medical CI
Expanding Incidents):
Geo/ Time/ Threat/
Response
Dynamic Community Partnerships with Disability Stakeholders
Local approaches for local issues Understand the big picture and help shape the approach
– We are all planners! Practical, Familiar, Friendly Leverage your strengths, work to mitigate and build
broad team support for areas of challenge Partnership demands persistence, time, and a team
approach Partnership is a growth process, but with the
understanding that this is a long-term commitment, it is a nurturing and honest friendship also.
Take Homes
Dynamic Community Partnerships with Disability Stakeholders
If we are together, nothing is impossible.
-Winston Churchill
Dynamic Community Partnerships with Disability Stakeholders
Thank you!
Maggie Kare-Elestwani, RN
(832) 744-1558
Principal Analyst
Resilient Services Group (RSG)
Agoric Source, LLC
Texas Collaborative for People with Disabilities
ILRU Memorial Hermann TIRR ● Houston CIL ●
BCM CROWD ● Resilient Services Group
Lex FriedenProfessor of Health Informatics, Professor of Rehabilitation, University of Texas at Houstonwww.shis.uth.tmc.eduSenior Vice President, TIRRDirector, ILRU www.ilru.orgProfessor of Rehabilitation, Professor of Community Medicine, Baylor College of Medicine www.bcm.edu (713) 520-0232 x124(713) 520-5785 Faxmailto:[email protected]://www.lexfrieden.com