I have been involved on a voluntary basis in emergency management and preparedness for 15 years in various areas around the country. My passion is getting people with disabilities involved in disaster preparedness because our community knows that during those times, we lose.

Why? Because jurisdictions do not include people with disabilities in their disaster plans. At best we are an afterthought. Because of this, we lose–we are displaced, unnecessarily institutionalized, often far from home, and we die–deaths that could have been prevented but for reaching out and including us in preparedness planning before, during and after disasters.

On the federal level, there are several bad actors responsible for people with disabilities being discriminated against and suffering needlessly during disasters. The Federal Emergency Management Agency FEMA), the American Red Cross, and the Centers for Medicaid and Medicare Services (CMS) are three big players who must be held accountable.

FEMA

According to its mission statement, The Federal Emergency Management Agency is responsible for helping people before, during and after disasters. Unfortunately, this doesn’t include disabled folks. FEMA recently disbanded almost it’s entire cadre of Disability Integration Specialists, who are responsible for ensuring that the disability community is served during this time. In fact, Linda Mastandrea, Director of the Office of Disability Integration and Coordination, effectively told attendees at the Getting it Right 2018 National Inclusive Disaster Strategies Conference in Washington, DC, that we were on our own. Puerto Rico was still reeling from Hurricane Maria and we were getting ready for the season that would include Hurricanes Michael and Florence. To hear this was frightening, indeed! With the subsequent unnecessary deaths of disabled people in those disasters, FEMA has blood on it’s hands and must be held accountable!

American Red Cross

The American Red Cross provides disaster relief, but is best known for running shelters across the United States where people go to when they need to leave their homes during disasters. These shelters are supposed to be accessible to people with disabilities, but we are often turned away, either because the shelter is not wheelchair accessible or shelter managers mistakenly turn away people with service animals. Often, those with complex disabilities are turned away or sent to segregated medical shelters.

Centers for Medicare and Medicaid Services (CMS)

The involvement of CMS is especially egregious. They recently expedited the ability of shelters in South Carolina to send disabled people to nursing facilities, often far away, when shelters can’t handle us and our needs. Once in a nursing facility, it is very difficult to get out. This is in violation of the 1999 Olmstead Supreme Court decision that says unnecessary institutionalization is discrimination under the Americans with Disabilities Act. That CMS is colluding with an agency that actively discriminates against disabled folks is beyond belief!

ADAPT and FEMA

FEMA was to have a meeting on their Strategic Plan (https://www.fema.gov/strategic-plan) with various stakeholders, including some disability groups, however, that plan was written without input from the disability community. In fact, but for a picture, there literally was no mention of us!

Then a meeting with ADAPT was scheduled for November 6th, and we provided our conference call number. But FEMA Administrator Brock Long preferred that we use FEMA’s number. On October 29th, 30th and 31st, ADAPT members from all ten FEMA regions contacted Administrator Brock Long, asking that he postpone the original stakeholder meeting because the disability community was not consulted. Our request was denied so, in good faith, we went ahead with the November 6th call, hoping that at least, we could give input that FEMA would act on.

Administrator Long controlled the call so that we could not speak unless he opened each line. When we were finally permitted to speak after 20 minutes, we told FEMA our grave concerns and chided them for having us on a call where they had no intentions of listening to us. At that point, the call was abruptly ended by FEMA. If there was any doubt that FEMA cared for disabled people or wanted to address disability issues in disaster preparedness, that phone call more than confirmed it!

READI Act

On November 29, 2018, S. 3679, the READI (Readying Elders and Americans with Disabilities Inclusively) for Disasters Act, was introduced by Senator Bob Casey, (D-PA) after hearing from his constituents. It would ensure that older adults and individuals with disabilities are prepared for disasters, and for other purposes.

It will also coordinate efforts between federal, tribal, territorial, state, local and non-governmental agencies during the preparation, response, and mitigation before, during and after disasters.

The READI for Disasters Act will redefine how our government reviews the use of disaster response funds, will create training, and disability and aging technical assistance disaster centers, as well as a program to examine specific issues related to people with disabilities and older adults. This bill will create a National Commission on Disability Rights and Disasters, including Department Of Justice involvement and oversight Committee to review all ADA settlement agreements related to disaster response activities for the years 2005-2017 and to also direct the Government Accountability Office to investigate whether past federal funds have been used to ensure accessibility to emergency programs and services.

The READI Act will be reintroduced in the 116th Congress. Hopefully, due in part, to the hard work of the disability community and our friends in Congress, it, and a House version will pass, it will be signed into law and people with disabilities will no longer be losers in disasters.

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