Dynamic Community Partnerships with Disability Stakeholders –

1. 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

2. Dynamic Community Partnerships with Disability Stakeholders If we are together nothing is impossible. -Winston Churchill 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

3. Dynamic Community Partnerships with Disability Stakeholders Outline • 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

4. Dynamic Community Partnerships with Disability Stakeholders Novel A (H1N1) - Where are we on the HRCGS all hazards map?

5. Humanitarian Response in Complex Geographic Settings (HRCGS), (Elestwani, 2008) All Hazards Threat Cascades Expanding Incidents): Geo/ Time/ Threat/ Response Tactical Response Filter Collaborative, Integrated Incident Response =Temporary partial to complete support of Med CI with components 1-8 Population Filter -Dynamic Location -Demographics -Dynamic Wellness and Health Status -Logistics/Network Collaborative Command & Control – NRF/NIMS * Pre-existing Unified Command Medical CI 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)

6. Dynamic Community Partnerships with Disability Stakeholders http://www.cdc.gov/H1N1FLU/ Novel Influenza A (H1N1) – the Challenge

7. 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)

8. Dynamic Community Partnerships with Disability Stakeholders Novel Influenza A (H1N1) – Hospitalizations and Deaths/ Mortality Total U.S. 2009 H1N1 Flu Hospitalizations and Deaths Posted September 4, 2009, 11:00 AM ET Data reported to CDC by September 3, 2009, 9:00 AM ET Reporting States and Territories* 53 Hospitalized Cases 9,079 Deaths 593 *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 aggregate of reports received by CDC from U.S. states and territories and will be updated weekly each Friday at 11am. For state level information, refer to state health departments.

9. Dynamic Community Partnerships with Disability Stakeholders H1N1 Disability Connection - Wellness Healthy People 2010 Objectives for People with Disabilities http://www.cdc.gov/ncbddd/dh/hp2010.htm

10. Dynamic Community Partnerships with Disability Stakeholders H1N1 Disability Connection – Primary Conditions • Medicare Adult Diagnoses • Medicare Pediatric Diagnoses • CSHCN Diagnoses

11. Dynamic Community Partnerships with Disability Stakeholders H1N1 Disability Connection – Secondary Conditions 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

12. Dynamic Community Partnerships with Disability Stakeholders A (H1N1) and Disability – Venn Diagram A (H1N1) At-Risk Disability Overlap Disability and DisabiltyHealth A (H1N1) At-Risk Groups

13. Dynamic Community Partnerships with Disability Stakeholders http://www.flu.gov/ A (H1N1) – Personal Preparedness

14. Dynamic Community Partnerships with Disability Stakeholders A (H1N1) – Community Preparedness and Response • 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

15. Dynamic Community Partnerships with Disability Stakeholders http://www.nod.org/index.cfm?fuseaction=Page.viewPage&pageId=1564 Emergency Preparedness Initiative (NOD)

16. Dynamic Community Partnerships with Disability Stakeholders http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm Saving Lives (NCD)

17. Dynamic Community Partnerships with Disability Stakeholders NCD 2009 - Collaborative Emergency Preparedness Report – a Menu Effective Emergency Management: Making Improvements for Communities and Individuals with Disabilities http://www.ncd.gov/whatsnew.htm

18. Dynamic Community Partnerships with Disability Stakeholders – One Way Forward

19. 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!

20. Dynamic Community Partnerships with Disability Stakeholders Every Community is Individual • Scale (Local, county, state, territory, tribal nation, nation) • Geography • Community Mosaic • Socioeconomics • How you work together – the Bottom Line

21. Dynamic Community Partnerships with Disability Stakeholders First Task – Collaborative Goal-setting • 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

22. Dynamic Community Partnerships with Disability Stakeholders What’s after Novel A (H1N1) - What would your collaborative like to tackle next?

23. Humanitarian Response in Complex Geographic Settings (HRCGS), (Elestwani, 2008) All Hazards Threat Cascades Expanding Incidents): Geo/ Time/ Threat/ Response Tactical Response Filter Collaborative, Integrated Incident Response =Temporary partial to complete support of Med CI with components 1-8 Population Filter -Dynamic Location -Demographics -Dynamic Wellness and Health Status -Logistics/Network Collaborative Command & Control – NRF/NIMS * Pre-existing Unified Command Medical CI 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)

24. Dynamic Community Partnerships with Disability Stakeholders Take Homes • 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.

25. Dynamic Community Partnerships with Disability Stakeholders If we are together, nothing is impossible. -Winston Churchill

26. Dynamic Community Partnerships with Disability Stakeholders Thank you! 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:lfrieden@bcm.eduhttp://www.lexfrieden.com Maggie Kare-Elestwani, RN melestwani@msn.com (832) 744-1558 Principal Analyst Resilient Services Group (RSG) Agoric Source, LLC maggie@agoric.com