1. DISABILITY AND PUBLIC SHELTER IN EMERGENCIES John Twigg Maria Kett, Helen Bottomley Lin-Tze Tan Hussam Nasreddin University College London (Research Challenges 2009)

2. Contents 1.Good practice (the ideal) 2.Experiences (the reality) 3.Context 4.Ways forward

3. 1. Good practice (the ideal): ensuring equal access shelter staff trained in meeting PWDs’ needs medical and volunteer assistance available promoting and sustaining PWDs’ independence and safety availability of food, including special diets technical support (e.g. refrigeration for medication) appropriate methods of communication appropriate temporary accommodation for those unable to return home immediately involvement of PWDs in shelter planning monitoring and evaluating shelter activity and practice assistance in returning home, or finding temporary accommodation

4. 2. Experiences (the reality): Access Access routes that PWDs cannot use Shelters that are physically inaccessible (location or entrance facilities)

5. ‘Marcie Roth of the National Spinal Cord Injury Association heard reports that American Red Cross shelters were refusing access to people with disabilities. Concerned, she contacted the Red Cross national headquarters. Roth quoted an employee from American Red Cross headquarters as saying, “Our shelters are not for them. There are places for them, run by local health departments, but still busloads of them kept being dropped off at our American Red Cross shelters. We can’t hardly serve the INTACT people” ’. National Council on Disability,The Impact of Hurricanes Katrina and Rita on Persons with Disabilities: A Look Back and Remaining Challenges (2006) Admission – PWDs refused admission to shelters on the grounds that the shelters cannot manage their disability and they should seek specialist facilities (particularly those with psychiatric disabilities)

6. Needs assessment Registration and assessment procedures that fail to pick up special needs Facilities Lack of accessible restrooms, cots, toilets, bathrooms, showers Food Difficulty in getting access to meals. Lack of options for specific dietary needs (e.g. unable to chew, diabetic)

7. Medication Trouble accessing, medication, medical equipment and medical supplies. Problems with assistance in refrigerating medication. Communications Telephone and other communications equipment inaccessible Lack of or inadequate signage, captioning and translation in communicating messages.

8. Personal support: Family members, carers, members of personal support networks discouraged from accompanying them into shelters or denied acc No provision made for service animals, leading to their exclusion from shelters. Marginalisation and discrimination by other shelter users, particularly in crowded shelters

9. ‘The importance of keeping disabled people together with their support network cannot be overemphasized. With the support network in place, an individual may be able to sustain more easily in either a general population shelter or in a medical needs facility … It is only common sense to expect that, deprived of familiar assistance, their ability to sustain independently will decline.’ Clive A, Davis EA, Hansen R, Mincin J, 2010, ‘Disability’. In Phillips BD et al., eds, Social Vulnerability to Disasters (2010): 187-216..

10. Staffing/Management: Acute shortage of shelter personnel trained in planning for PWDs, working with them and dealing with their needs. Lack of co-ordination and communication between emergency managers and between shelters regarding special needs, referrals and acquisition of additional specialist human and material resources. Shelter sites not surveyed with accessible features in mind; staff not trained in how to assess shelters for accessibility. Lack of engagement with DPOs and other specialist disability organizations, both in disaster planning and during events, to understand PWDs’ needs and provide support.

11. ‘A 2002 poll by the Texas Governor’s Committee on People with Disabilities found … Only 30 percent of cities surveyed have training and procedures to accommodate service animals, and fewer than half said they had training and procedures for providing and allowing use of medical equipment such as wheelchairs, walkers, and canes. Only 21 percent said they were prepared to provide specific diets, and 25 percent said they could provide insulin or asthma medications. While 76 percent of cities surveyed said they had telecommunication devices for the deaf (TDDs), 15 percent said they provide no training for shelter staff to use them.’ National Council on Disability, Saving Lives: Including People with Disabilities in Emergency Planning (2005): 25. ‘When people with disabilities were discussed, little concrete action resulted, due to a perceived lack of expertise within most multilateral agencies and international NGOs.’ International Disability Rights Monitor/Center for International Rehabilitation, Disability and Early Tsunami Relief Efforts in India, Indonesia and Thailand (2005): 6.

12. 3. Contextualising shelter management failings Disaster management structures Poor planning for PWDs Confusion about roles and responsibilities Passing the buck (to disability service providers) – linked to ‘medical model’ of disability (i.e. sees PWDs purely in terms of specific disabilities). Repeated failure to learn from past experience.

13. ‘All levels of government experienced systemic failures in their efforts to respond to the needs of the disability and aging populations’. National Organization on Disability, Report on Special Needs Assessment for Katrina Evacuees (SNAKE) Project (2006): 16 ‘many of the problems... are systemic in nature and were not caused solely by the hurricanes. The challenges faced by people with disabilities during and after the hurricanes, while unique in scope and proportion, were similar to the challenges people with disabilities face on a day-to-day basis’ National Council on Disability, The Impact of Hurricanes Katrina and Rita on Persons with Disabilities: A Look Back and Remaining Challenges (2006)

14. Invisibility ‘Most disaster response systems are designed for people who can walk, run, see, drive, hear, speak and quickly understand and respond to instructions and alerts’ Kailes JI, Southern California Wildfires After Action Report (2008): 10. ‘After 9/11 the Center for Independence of the Disabled (2004) reported, people at the Red Cross were polite and interested, but everything had to be brought to their attention.’ National Council on Disabilities, Saving Lives: Including People with Disabilities in Emergency Planning (2005): 40

15. Exclusion PWDs seen as passive recipients of aid. DPOs excluded from planning and implementation. Lack of communication ‘inclusion of disabled people seems to be limited to surveys, receiving relief and aids and equipment, 'and does not involve inclusion in planning, decision- making or management’ Kett M, Stubbs S, Yeo R, 2005, Disability in Conflict and Emergency Situations: Focus on Tsunami- affected Areas (2005): 8 ‘The overwhelming response to the question “What type of resources would be most helpful to better serve people they [New Orleans Center for Independent Living] serve in an emergency or disaster?” was the need better communication and networking at all levels.’ White GW, Fox MH, Rooney C, Cahill A, Assessing the Impact of Hurricane Katrina on Persons with Disabilities (2007): 21

16. 4. Ways forward Standard prescriptions Design and engineering. Organisation and planning (e.g. evacuation, stocking, retrofitting, registries, staff training).... but... ‘It is important to recognize that some of the challenges faced by people with disabilities who sought assistance in shelters are inherent in any disaster response – the initial general confusion, an inadequate number of trained personnel, etc. However many of the most significant problems could have been avoided with more inclusive emergency planning.’ National Council on Disability The Impact of Hurricanes Katrina and Rita on Persons with Disabilities: A Look Back and Remaining Challenges (2006)

17. Legislation, standards, rights Disability equality legislation (e.g. Americans with Disabilities Act) Standards (e.g. Sphere Humanitarian Charter and Minimum Standards in Disaster Response) Rights (e.g. UN Convention on the Rights of Persons with Disabilities)

18. ‘One of the many recorded complaints was that during a hurricane in Alexandria, Virginia, “The disaster volunteer was not trained on accessibility issues. He said that the shelters should be accessible since the law requires it. He didn’t understand the impact of me getting there only to discover that they were in violation of the law” ’ Research and Training Center on Independent Living 2004, cited in National Council on Disability, Saving Lives: Including People with Disabilities in Emergency Planning (2005): 35.

19. Empowering PWDs and DPOs ‘What is needed most is awareness that people with disabilities must be included – and the commitment to do so’. Groce N,‘People with Disabilities’. In Levy BS, Sidel V, eds, Social Injustice and Public Health (2006): 156. ‘Persons with disabilities and their organisations need to be actively involved in decision-making processes concerning situations of humanitarian emergencies and the occurrence of natural and man made disasters and in all the related emergency management activities. This involvement should be fostered by the development of inclusive policies at all levels starting from organizations of persons with disabilities and families, communities up to national and international organisations/bodies.’ “Verona Charter” on the rescue of persons with disabilities in case of disasters: Declaration of the participants in the Consensus Conference held in Verona on 8-9 November 2007

20. ‘effort must be undertaken to raise the awareness of persons with disabilities to the hazards of not being proactively involved in disaster planning at both the personal and community levels. Emergency managers must be willing to reach out to the disability community more aggressively, but it is incumbent on members of the disability community to also reach out to emergency managers if they ignore this opportunity’ Fox MH, White GW, Rooney C, Rowland JL, ‘Disaster Preparedness and Response for Persons with Mobility Impairments: Results from the University of Kansas Nobody Left Behind Study’. Journal of Disability Policy Studies 17 (2007): 196-2005