Presentation by Pat Pound,
First Vice Chairperson
National Council on Disability

Mapping the Landscape

Hello, my name is Pat Pound and on behalf of the National Council on Disability (NCD), I would like to thank you for inviting us to present today.

NCD is an independent federal agency, composed of 15 members appointed by the President and confirmed by the Senate. NCD's purpose is to promote policies and practices that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability, and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and integration into all aspects of society.

I’d like to share a story of how NCD became involved in this issue, and then to share some key findings and promising practices and recommendations we have for making improvements for communities and people with disabilities. After 9/11 we became interested in how people with disabilities are faring during emergencies. We had some survivor stories from 9/11 including an organization serving blind individuals located in one of the towers. They all evacuated safely, largely because they had drilled extensively on how to do so. Other stories were not as positive. We looked into what was published on this subject in 2004 and found very little, so we published a report in 2005 called Saving Lives, Including People with Disabilities in Emergency Planning. We included what research existed along with stories from people with disabilities about their experiences. We also conjectured what might happen to people with disabilities if a catastrophic hurricane hit the gulf coast. We published that report in April of 2005 which of course was the year that Hurricanes Katrina and Rita hit. Congress called us “eerily prophetic”. Fast forward to today—we have published a new report entitled Effective Emergency Management: Making Improvements for Communities and People with Disabilities. As you can see, the size has increased considerably—and this is because a lot more research has been done and activities undertaken on this issue.

Fortunately, the nation seems poised at a critical turning point, with greater determination than ever to move forward in reducing disasters and building capacities of those at risk.

To support this trend NCD offers our new report.

The new NCD report is divided into three sections:

1. the life cycle of comprehensive emergency management;
2. emergency managers and voluntary organizations; and
3. promising practices.

Some of the report findings include:

1. We’re making progress but still have a long way to go
2. There is a lack of evidence based research on the best ways to assist people with disabilities during disasters
3. The greatest amount of work has been done in the area of preparation but there’s need for more regarding education/training, planning, design of warnings, and sheltering services.
4. Emergency managers are often not prepared for serving people with disabilities due to burdens on minimal staffing; people with disabilities often are not prepared for disasters due to their challenging life circumstances.
5. Most emergency management planning occurs without input from disability organizations or people with disabilities.
6. We need more research into the best ways to assist people with disabilities especially in the area of search and rescue.
7. More attention needs to be given to the needs of:
   1. People in nursing homes
   2. People who do not drive or do not have cars
   3. People who need general or functional needs shelter services
8. Some areas need to be addressed in the disability community and then implemented in emergency management
9. People with disabilities trying to recover from disasters experience:
   1. Difficulty finding temporary accessible housing
   2. Lack of Insurance coverage for specialized disability needs
   3. Gaps in Federal assistance d. Loss of access to health care
   4. Disruption of caregiver networks
10. Very little work has been done in the area of mitigation although this offers the greatest opportunity for decreasing the impact of disasters.

Promising Practices

In our report we include many promising practices. We describe the practice, link to it if there is information on the Internet, and then we provide a bulleted list telling what we thought was valuable about this practice. This way there is ample information to both learn more about the program and to determine why we believe it is a promising practice.

Here are a few promising practices that relate either to technology, to communications or to involving people with disabilities or disability organizations.

Oklahoma’s Weather Alert Remote Notification (OK-WARN) for deaf or hard of hearing residents offers emergency alerts through email, pager, or text messages. Using a FEMA grant, the Oklahoma Office of Emergency Management (OEM) was able to provide this service free to deaf and hard of hearing individuals who have their own pager, email address, or cell phone, and who fill out an application form on the Oklahoma OEM Web site. Critical messages are delivered repeatedly and are also archived for the long term (http://www.ok.gov/OEM/Programs_&_Services/ Preparedness/OK-Warn_for_the_Deaf_and_Hard-of-Hearing/index.html).

Weather Alert 2000 provides text to wireless phones and pagers during inclement weather (Wood and Weisman 2003). “The device can activate a strobe light and an alarm tone when it receives warnings via a satellite signal, and can be programmed to receive weather alert information for up to 16 counties anywhere in the United States” (p. 193). While this technology is more expensive than the monthly fees incurred by weather pagers, it is able to transmit messages during storms, when weather pagers cannot.

The Kansas Association of Local Health Departments (2007) developed a Special Needs Assessment Tool Kit for pandemic influenza mapping and outreach. The tool kit provides detailed instructions on how to assess the needs of the elderly, people with disabilities, non-English-speaking people, and people living in congregate settings (homeless shelters, institutional settings, etc.). Tool kit items include agency and household assessments.

The University of Kansas Research and Training Center on Independent Living created an online course to train hospital staff, health care workers, emergency personnel, and other workers to assist people with disabilities during disaster events. The online training is currently available to 22 states and the Medical Reserve Corps, including a version in large font. The course, “Ready, Willing, and Able” is eligible for continuing education credit by the Kansas Nurses Association and is available free at the Public Health Foundation’s Train National website (other disability and emergency courses are also available on the site; see www.train.org).

The Louisiana School for the Deaf used their Web pages, text paging capabilities, and social networks to find and support students who were displaced. Emerging technologies that connect to younger students are also promising for people with disabilities. The University of Maryland at College Park recently set up a Facebook group for emergency preparedness and other information, an effort that has been emulated by Purdue and Notre Dame. In January 2009, FEMA launched its Twitter account, FEMA in Focus, “to highlight the value of social media tools in emergency management and disaster response.”

Recommendations

This report offers recommendations for Federal, State, local and individual levels. Here are some that will allow us to map the landscape.

Preparation

Policies focusing on disaster preparedness should strive to protect and maintain the independence of people with disabilities. This includes addressing issues such as appropriate warning systems, transportation services, and sheltering options—to name a few.

Strengthen compliance with FCC policies on emergency communications, closed captioning, and similar tools for disseminating warning messages.

Response

Policymakers should address public funds earmarked for civil defense sirens and use some monies for alternative warning systems. Avoid mandating registries without sufficient resources for staff time to ensure that such lists are regularly updated

Recovery

Executive Order 12311 on the Disaster Portal requires language specific to disability issues.

The Individual Assistance program needs to specify that assistive devices and durable medical equipment can be included as qualified items. Specific examples of items that qualify should be included.

Mitigation

Upgrade the FEMA mitigation video series to current technologies and formats, such as downloadable videos. Expand the coverage beyond medical facilities to include congregate care facilities, schools, retirement communities, public housing, and individual housing. Specifically address the value of mitigation activities and measures with and for people with disabilities.

Thank you all for listening, please know that the full report is available on the NCD website, and if you desire is also provided on thumb drives.

Should you desire a print copy with tabs please feel free to contact the NCD office. Our Web address is www.ncd.gov.