April 10, 2018
William B. “Brock” Long
Federal Emergency Management Agency
500 C Street SW.
Washington DC 20024
Dear Administrator Long:
I write on behalf of the National Council on Disability - an independent, nonpartisan federal agency charged with providing advice to Congress, the President, and other federal agencies on matters affecting the lives of people with disabilities - to offer specific recommendations to improve the outcomes of people with disabilities before, during, and after a major disaster. Specifically, NCD recommends restructuring the Regional Disability Integration Specialist roles and responsibilities; supporting Congress in efforts to modify the Stafford Act to eliminate the inclusion of medical expenses for grant max totals, and implementing policies to improve data collection on the outcomes of people with disabilities in the aftermath of a major disaster.
The Post Katrina Emergency Management Reform Act (PKEMRA) required that NCD and FEMA work closely with each other to improve the outcomes of persons with disabilities before, during and after major disasters. NCD has served as a liaison within the disability community and FEMA in working to achieve that goal. Our recommendations are derived from meetings and discussions with the disability community in which they voiced concerns regarding these issues.
Restructuring of Regional Disability Integration Specialist Roles
PKEMRA called for the creation of the Office of Disability Integration and Coordination (ODIC) and established the position of Regional Disability Integration Specialists (RDIS) charged with enforcing disability integration laws before, during, and after a major disaster. The hope was that the RDIS position would complement and assist ODIC in carrying out its mission. In its current form, RDISs are not systematically placed. Instead, regional offices determine the department the RDIS will be housed which may result in a lack of consistency in the specific roles and responsibilities of the position and differing expectations for that position. Additionally, RDIS’ do not report to nor is that position held accountable at the federal level. This current structure creates a disconnect from the federal level as well as a lack of uniformity regarding its roles and responsibilities, which in turn may present as ineffective leadership in the field during a major disaster. NCD recommends the restructuring of the RDIS so that all are housed within the same department in each region, share the same roles and responsibilities, and complement and assist ODIC in fulfilling its mission.
Disaster Recovery Reform Act (HR 4460)
The Stafford Act includes a provision which provides financial assistance to individuals and households who have been impacted as a direct result of a major disaster. These funds are used to supply temporary housing and/or to repair one’s current residence. The provision also supplies funds for other needs such as medical, dental, childcare, and funeral expenses. The current maximum financial assistance an individual or household may receive from FEMA is $33,000 per major disaster. On paper that seems like a lot of money for a person with a disability, that money can be exhausted if a wheelchair must be replaced or due to new housing requirements the home requires costly modifications to ensure access. As was the issue post Hurricane Sandy, most of the destroyed homes were required to elevate their foundation in order to qualify for FEMA assistance which forced those with mobility restrictions to incur yet another monetary burden in the form of an elevator. As reference, a residential elevator starts at approximately $25,000 and a complex power wheelchair starting price is approximately $30,000. A person with a disability can easily exhaust FEMA funds on needed DME equipment or access needs, leaving zero grant money left to repair their home.
In order to level the playing field, NCD recommends FEMA support congressional efforts to amend the Stafford Act (The Disaster Recovery Reform Act (HR 4460)). The proposed amendment would ensure that funds provided to persons with disabilities used to purchase goods and services specifically required because of a person’s disability would not be counted towards the maximum allowable FEMA grant money. By doing so, persons with disabilities would have access to the same monetary benefit to repair their home as everyone and would eliminate the need for a person with a disability to choose between much-needed medical equipment or a functional home to live in.
Data Collection and Data Usage
Unacceptable outcomes for people with disabilities were revealed after 2017’s hurricane season. In Texas, people with disabilities living in the community prior to the hurricane were transferred to institutional settings because of a shelter’s inability to provide required services or lack of post shelter housing options. Additionally, many people with disabilities reported difficulties navigating disaster recovery registration and access to programs. These complaints and issues are recurring regardless of the disaster or the state in which it occurs.
The Office of Disability Integration and Coordination’s (ODIC) mission is to achieve whole community emergency management, inclusive of individuals with disabilities and others with access and functional needs, by providing guidance, tools, methods and strategies to establish equal physical, program and effective communication access. As the above issues reveal, people with disabilities still do not have equal access to FEMA programs. This is due in part by the method in which FEMA collects and collates data.
Current data collection begins when a person applies for FEMA assistance – which means people with disabilities who have difficulty accessing FEMA assistance or are placed in institutions because of inaccessible shelters are not included in any FEMA data collection.
It is critical for FEMA to be able to access qualifying data to review and analyze so it can continue to improve the outcomes of persons with disabilities before, during, and after a major disaster. NCD recommends FEMA revisit its methodology for data collection by modifying the onset of data collection and the phrasing of questions to eliminate ambiguity; provide training to FEMA personnel to improve their ability during intake to identify hidden disabilities; shape follow-up questions to ensure that all persons with disabilities are provided accommodations required in order to access FEMA programs; provide public outreach to communities to stress the importance of accurate data collection pertaining to disability to ensure access to all FEMA programs; and retain collected data and analyze outcomes post disaster to improve the access to FEMA programs in subsequent major disasters for people with disabilities. Improved policies pertaining to data collection would give FEMA the ability to assess the specific outcomes of people with disabilities and proffer recommendations to mitigate the same or similar results in future disaster relief recovery efforts.
These recommendations are prudent and timely given the havoc wreaked by Hurricane Harvey, Irma, and Maria this past hurricane season and it is critical they be addressed before the next disaster strikes so as not to place the well-being of people with disabilities in jeopardy again. NCD has enjoyed a long history of working with FEMA and ODIC to improve the outcomes of persons with disabilities in the wake of major disasters. The Council is headed to Texas in May to hear first-hand about the institutionalization of persons with disabilities following Harvey.
We look forward to discussing our recommendations with you further. Please have your staff contact my lead emergency preparedness staff, Amy Nicholas, at firstname.lastname@example.org to set up a time for us to meet.
Neil Romano Chairman