Disaster Case Management: Developing a Comprehensive National Program Focused on Outcomes

Disaster Case Management: Developing a Comprehensive National Program Focused on Outcomes

Testimony of John R. Vaughn, Chairperson
National Council on Disability (NCD)

Ad Hoc Subcommittee on Disaster Recovery

Homeland Security and Governmental Affairs Committee
U.S. Senate

"Disaster Case Management: Developing a Comprehensive National Program
Focused on Outcomes"

Wednesday, December 2, 2009 342
Dirksen Senate Office Building 2:30 P.M.

Ms. Chairwoman, Ranking Member Graham, and Members of the Senate Homeland Security and Governmental Affairs Ad Hoc Subcommittee on Disaster Recovery:

On behalf of the Members of the National Council on Disability, thank you for your consideration of the following written testimony for inclusion in the written record.

National Council on Disability

NCD is composed of 15 members, appointed by the President, with the consent of the U.S. Senate, and a staff that supports the Council's work. The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and integration into all aspects of society. To accomplish this, we gather stakeholder input, review federal programs and legislation, and provide advice and recommendations to the President, Congress and government agencies. Much of this advice comes from timely reports and papers NCD releases throughout each year, such as our recently released Effective Emergency Management: Making Improvements for Communities and People with Disabilities report.

NCD's Role in Emergency Preparedness Policy

NCD developed a keen interest in emergency preparedness policy following the September 11, 2001 attacks. Finding very little published on emergency preparedness as it pertained to the unique considerations of people with disabilities, NCD embarked on a research project that culminated in the release of a report in April 2005 entitled Saving Lives: Including People with Disabilities in Emergency Planning (/publications/2005/Saving Lives). The Saving Lives report brought what little research existed on the topic to the fore, pairing it with stories from individuals with disabilities about their personal experiences in times of emergencies. The report also presented a "what-if" scenario of a major hurricane striking the Gulf Coast. In the report, NCD proposed steps the federal government should take to ensure that the needs of people with disabilities be appropriately incorporated into emergency preparedness, disaster relief, and homeland security plans. Hurricane Katrina struck just four months after the report's release.

Subsequent to issuing Saving Lives, NCD issued two other evaluations. In July 2006, NCD released a paper titled, The Needs of People with Psychiatric Disabilities During and After Hurricanes Katrina and Rita: Position Paper and Recommendations (/publications/2006/peopleneeds). In August 2006, NCD issued The Impact of Hurricanes Katrina and Rita: A Look Back and Remaining Challenges (/publications/2006/hurricanes_impact). In both papers, like the earlier report, while the focus is on the emergency preparedness and response to Hurricanes Katrina and Rita, many of the problems addressed are systemic in nature and were not caused solely by the hurricanes.

In 2006 the Homeland Security Appropriations bill's Post-Katrina Emergency Management Reform Act (H.R. 5441) charged the FEMA Administrator to work with NCD on specific tasks. These tasks involved: appointing a Disability Coordinator; interacting with stakeholders regarding emergency planning requirements and relief efforts in case of disaster; revising and updating guidelines for government disaster emergency preparedness; evaluating a national training program to implement the national preparedness goal; assessing the Nation's prevention capabilities; identifying and sharing best practices; coordinating and maintaining a National Disaster Housing Strategy; developing accessibility guidelines for communications and programs in, shelters, and recovery centers; and, helping all levels of government in the planning of evacuation facilities that house people with disabilities.

Based on its ongoing policy and research work in the area of homeland security, NCD identified a major gap in the government's knowledge base. That gap involves the availability and use of effective practices for community preparedness and response to the needs of people with disabilities in all types of disasters. In 2008, NCD began to review the spectrum of available studies and defined a set of best and promising practices for emergency management across the life cycle of disasters (preparedness, response, recovery, mitigation) and geographic areas (urban to rural locations). In addition, NCD collected more information about promising practices from emergency management presentations, a public consultation, and public testimony received in writing and at Council meetings held throughout the country. On August 12, 2009 NCD released the report entitled Effective Emergency Management: Improving Communities for People with Disabilities at the National Citizen Corps Program annual meeting in Alexandria, VA. Since the August 12, 2009 release of that report, NCD has continued to extensively distribute the report as a resource across the country to several hundred emergency management agencies at the state and local levels.

Although the Council's recent report offers analysis and policy recommendations regarding the entire life cycle of a disaster, we limit our written testimony here to the recovery phase of a disaster and the topic of disaster case management as it affects people with disabilities. The testimony first outlines several of the areas of paramount concern to people with disabilities during the recovery phase of the disaster life cycle and explains the weighty implications each of those areas can have unique to people with disabilities. After establishing an overview of these unique concerns ripe for case management services, the testimony focuses on the topic of case management itself, making several pointed recommendations for how development of a mitigation- and recovery-oriented system of case management could ensure that the needs of people with disabilities are met.

Disaster Recovery for People with Disabilities

The recovery time period is the least well researched phase in the emergency management life cycle. Coupled with a noted dearth of studies on people with disabilities, it is not surprising that only minimal efforts have been made to address disaster recovery for this population. The technical reports, testimony, and other materials that do exist strongly suggest that the recovery phase is a problematic time for people with disabilities.

As Hurricane Katrina revealed, considerable post-disaster challenges exist for people with disabilities, including:

• Difficulty finding temporary accessible housing;
• Lack of insurance coverage for specialized disability needs;
• Gaps in Federal assistance;
• A loss of access to health care; and Disruption of caregiver networks upon which many rely

Housing Concerns

Perhaps surprisingly, housing is one of the least examined areas of recovery research, despite its importance. Low-income housing tends to take a disproportionate "hit" during a disaster because it is likely to be older and less likely to comply with the standards of modern building codes; located in a floodplain or other hazardous area; and less structurally able to withstand an event (such as manufactured housing). Thus, seniors and people with disabilities at lower incomes presumably bear a higher risk of displacement from their homes.

Public housing can be problematic when it has been affected, particularly in locations that are approved through the Section 8 Housing Choice Voucher Program. Although the Department of Housing and Urban Development (HUD) maintains lists of available units across the nation, those units may not be located nearby. In past disasters, HUD and local housing authorities have identified and verified appropriate locations for replacement rentals. After the California wildfires in 2007, HUD established a new National Housing Locator System. The system invited prospective landlords and property owners to list units. Approximately 26,000 units were identified within a 300-mile radius of San Diego County. The list included the ability to search for accessible units, although additional concerns remained, including proximity to work, family, health care, transportation, banking, pharmacies, and other routinely accessed sources of support.

In New Orleans, public housing units remain unavailable while they are being rebuilt by HUD and area housing authorities. Concern has been expressed by local residents that the new units, which will be in mixed-income ranges, will displace or deter lower income residents. Finding housing near vital support systems needed by people with disabilities, the elderly, and people with medical conditions is also of concern. For example, relocation 100 miles away from a familiar senior center or dialysis center would be problematic.

After Hurricane Katrina, FEMA failed to provide temporary trailers that were accessible. In Brou v. FEMA (the Department of Homeland Security was also named in the suit), successful plaintiffs argued in a class action discrimination suit that the federal agency had not provided accessible trailers (e.g., with wheelchair ramps, maneuvering room, or grab bars), resulting in a longer wait for temporary housing. As another example, housing advocates have noted in conference presentations that mitigation elevations along the Gulf Coast displace people with mobility disabilities and senior citizens. Some organizations report that some of these people have been forced to choose congregate care over independent living.[i] Brou v. FEMA was one of several efforts by the disability community that have resulted in changes at FEMA when it comes to disaster response and recovery. In another example, FEMA is incorporating disability-specific ideas and language into its National Disaster Housing Strategy and Plan.

Disrupted Education for Children with Disabilities

In NCD's 2006 The Impact of Hurricanes Katrina and Rita on People with Disabilities: A Look Back and Remaining Challenges[ii] paper, NCD noted that Hurricane Katrina displaced approximately 247,000 students from Louisiana, 125,000 from Mississippi, and 3,000 from Alabama; additionally, Hurricane Rita displaced about 86,000 students from Texas' schools.[iii] Over 200,000 school age children, 135,000 of whom are from Louisiana, have been rendered homeless because of Hurricanes Katrina and Rita.[iv] Some estimates indicate that 12 percent of the displaced students have disabilities.[v]

Advocacy, Inc., of Texas estimated that Hurricane Rita displaced about 2,200 children with disabilities under the age of five - many of those children will need early intervention services - and about 5,000 school-aged children with disabilities.[vi] One of the most crucial challenges for disaster recovery efforts is to continue the education of student-evacuees while rebuilding educational services in the Gulf Coast.

After major disasters, many schools struggle to reopen for protracted periods of time. As a result, many student-evacuees integrate into new school systems. Nevertheless, the temporary nature of shelter or emergency housing has caused many students to be transferred from school to school numerous times.

For student-evacuees with disabilities, the transfer to other school systems has been particularly problematic. Some student-evacuees with disabilities were unable to register for school because they had not secured housing in the evacuation area and therefore could not provide documentation. However, the McKinney-Vento Homeless Assistance Act[vii] allows students to attend school despite the lack of formal documentation. However, for many student-evacuees with disabilities who did not bring documentation about the nature of their disability or about their IEPs when they fled from the hurricanes, some schools denied them the provision of necessary special education services.[viii]

The state of Alabama was an exception to this phenomenon. After Katrina, it decided to "take the parents at their word" and provided special education services to evacuees to the best of the schools' abilities, despite the lack of formal documentation.[ix] Similarly, Fort Worth district officials temporarily waived documentation requirements. Several Texas school districts hired additional staff in anticipation of an influx of students with special needs, estimating that between 10 and 15 percent of student-evacuees would have some type of learning disability.[x] On a federal level, Congress and the President jump-started various efforts to help children with disabilities return to school as quickly as possible, releasing millions in aid to help displaced children.

Financial Recovery

The financial impact on people with disabilities who endure disasters is unknown, but it seems self-evident that for low-income households, which are more prevalent among people with disabilities, the impact is considerable. Hurricane Katrina, though not the typical disaster, illustrates a number of problems. Because people with disabilities were displaced and relocated throughout the country, accessing specific services-such as Medicare and Medicare Part D prescription coverage, veterans' benefits, Social Security checks, and Supplemental Security Income (SSI)-was difficult, if not impossible in some instances. People experienced disruption of work and personal life, often the types of activities that give a sense of stability during stressful periods. People also lost access to their bank accounts to which monthly checks were being sent. The widespread displacement across the country meant that local, familiar social service and health care providers were not available. Case managers could not find their clients. The impact and extent of the disruption is not known, but it is clear that the effects were profound.

Medical and Health Impacts

An example of the profundity of the disruption is seen in one survey among those with one or more chronic conditions. Of those surveyed, 21 percent cut back or terminated their health care.[xi] Affected persons were usually elderly, uninsured, and/or isolated. Reasons for cutting back included the following: 41 percent lacked access to a physician; 33 percent could not afford or obtain medications; 29 percent had financial problems; and 23 percent lacked transportation to health care. The finding that these conditions affected seniors (disability prevalence increases dramatically with age) coincides with reports from caseworkers.

Other barriers to receiving health care and health problems for disaster victims include[xii]:

• Loss of medication or medical devices
• Finding time to seek medical care
• Paying for medical care
• New health problems
• Worsening health problems

When the health care infrastructure is itself affected, barriers and poor health outcomes escalate. For instance, following Hurricane Katrina, several medical centers and hospitals were forced to close or underwent extensive staff losses. As a result, one study reported the following health concerns among adults in New Orleans two years after the storm:

• More than 4 in 10 adults reported worse access to health care.
• In Orleans Parish, one in four adults reported being uninsured.
• Seventy percent of the uninsured were black.
• More than 1 in 10 adults ranked their health as fair or poor.
• Four in 10 said they had been diagnosed with a chronic disease

Considerable disruption to medications and mental health services occurred as a result of Katrina as well as other disasters. After Hurricanes Ike and Gustav, for example, people remained away from their homes, providers, and pharmacies, and missed out on medications for weeks at a time. Under these circumstances, significant health problems can manifest from withdrawal symptoms or disrupted medication routines.[xiii] Special needs shelters and other locations are increasingly addressing these concerns, but challenges remain at many shelter locations. Long-term studies of the consequences of these circumstances should be generated to better inform both policy and practice. Long-term and mobile outreach to affected, displaced populations needs to be further investigated.

Disaster Case Management and People with Disabilities

All of the experiences outlined above undermine the ability of people with disabilities to recover in the short and long terms. Exacerbating these detrimental experiences, emergency managers and non-governmental organizations (NGOs) often work side by side in a disaster context to provide relief and recovery assistance, yet they often remain distant from people with disabilities and disability organizations.

A Lack of Focus on Human Recovery

Although we know that disability non-governmental organizations (NGOs) deliver services to support human recovery after disasters have ended, no formalized system of services or operating plan exists to that end. Current federal and state guidance lacks a focus on human recovery, offers virtually no protocols on how to implement human recovery (particularly for those who have the fewest resources pre-disaster), and provides little support for long-term case management. Further, disability-related NGO roles have not been formalized or integrated into local and state planning and recovery efforts. Despite Emergency Support Function (ESF) and National Incident Management System (NIMS) provisions that articulate the need for health-related services to support human recovery (e.g., ESF-6 focuses on mass care and ESF-14 on long-term recovery), there is a lack of clarity in terms of how to make this guidance operational, and there is no standard alignment of resources with these functions.

Developing a Mitigation-and Recovery-Oriented Service System and Operating Plan

NCD believes there is a great need to develop both a mitigation-oriented and recovery-specific service system and an operating plan to guide human recovery and to integrate and formalize disability-related NGO roles and responsibilities into relevant federal policies and guidance. Developing such a service system and operating plan should directly involve people with disabilities throughout all stages, and explanation of that involvement should be reflected in formal state plans.

Development of a mitigation-oriented and recovery-specific service system and operating plan would involve several steps. First, clear federal guidance or templates outlining how disability-related NGOs should be involved in the plans for human recovery via ESF-6 and ESF-14 and supported by specific language in the Stafford Act must be established. Second, case management must be specifically addressed, as it is one of the key roles and responsibilities NGOs provide is case management. Case management, as currently defined by the Stafford Act, is for "services, to victims of major disasters to identify and address unmet needs."[1]

Expanding the definition of case management to include direct services may help address short- and long-term recovery needs by ensuring their consistent coverage. Lawmakers could also add language to the Stafford Act to provide for disability-related NGO capacity assessment for human services, directions for state and local governments to integrate disability-related NGOs into planning and service delivery, and guidance for how to publicly fund the designated services.

Katrina Aid Today, a disaster case management approach that is unfortunately no longer funded, represented many best practices. Katrina Aid Today used local social workers and established procedures to guide individuals through the recovery process. The joint efforts of government officials and disability organizations and advocates were particularly helpful in identifying problems and recommending solutions that work.

Disability Specialist Case Managers

In addition, within such a system and operating plan, NCD recommends developing a corps of pre-identified disability specialist case managers who are uniquely equipped with both the competence of and familiarity with circumstances and service needs common to people with disabilities. This level of competence and familiarity will ensure that the demand of clients with disabilities can be met quickly and appropriately.

This corps of disability case managers should include people with disabilities from the state and/or local community affected by the disaster and could draw from established state and/or local community-based organizations (e.g., Centers for Independent Living, Protection and Advocacy Organizations). Employees of such organizations are already well-versed with the disability population of the area, local conditions, and resource networks that will play vital roles in effective human recovery.

NCD has noted in its studies that there the lack of trained support personnel is an ongoing challenge in emergency management services for people with disabilities. As a result, it will be important to ensure that the corps of disability case mangers obtain the appropriate, on-going training needed to be "uniquely equipped with both the competence of and familiarity with circumstances and service needs common to people with disabilities." It will also be necessary to ensuring that the corps of disability case managers maintain their training to serve people with disabilities and that the organizations from which they provide services are able to maintain their capacity to support those disability case managers.

A National Program Focused on Outcomes

Measuring the outcomes of disaster case management, such as individual life outcomes that result from an individual having a case manager is difficult. Part of the challenge is due to the complexity of the human services system particularly one related to a natural disaster. The federal government has spent $231 million of FEMA and HUD funds for Post-Katrina case management work according to the Government Accountability Office (GAO).[2] GAO also reported that evaluations of FEM-A and HUD-funded pilot programs in the Gulf Coast for Post-Katrina case management work did not focus on program outcomes or client results,[3] notwithstanding a previous recommendation by GAO to conduct an outcome evaluation of the pilot case management programs.[4] Federal agencies have, however, reported that they will rely on third-party evaluations of the current pilot programs, and that the evaluations will include program outcomes.[5]

Measuring the outcomes of case management, such as individual life outcomes that result from an individual having a case manager, is challenging. Part of the challenge is due to the complexity of the human services system particularly one related to a natural disaster. It is hoped that the case management service effectiveness outcomes (e.g., delivering the appropriate service at the right time, decreased duplication of services, Reduction of disaster services/human services), as well as valued client outcomes (e.g., access to assistive technology, replacement of durable medical equipment, improved post-disaster health status, avoidance of institutionalization, achievement of client disaster recovery goals, client satisfaction with services and supports).

Admittedly, some outcomes may be difficult to quantify and/or prove that they are a result of case management intervention supplied through the two federally-funded pilot programs. Further, there is a risk to suggesting that case management can be accountable for program and/or client outcomes that in fact are dependent on the larger human services system (e.g., city or county wide) in which the case management service is delivered. Indicators, specific to case management then, will need to be carefully selected and implemented in order to avoid wrongly attributing to case management results that are dependent on the service system upon which the case management pilot programs rest.

Conclusion

The challenges faced by people with disabilities, seniors, and residents of low-income households following disasters often demonstrate considerable overlap. Planning for and accommodating people with disabilities throughout all phases of a disaster, including recovery, and specifically within case management, often means being better equipped to serve all people.

As a final note, in addition to the recommendations regarding case management NCD provides in this testimony, NCD's Effective Emergency Management report contains a plethora of additional recommendations not only for the recovery phase, but for all phases of the disaster life cycle, which may further inform this Committee's work.

On behalf of the Members of NCD, thank you again for the opportunity to contribute testimony to the written record.

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[1] 42 U.S.C. 5189d § 426, Case Management Services
[2] Disaster Assistance: Improvements in Providing Federal Disaster Case Management Services Could Help Agencies Better Assist Victims, GAO-10-278T, p. 5, December 02, 2009
[3] Ibid, page 13
[4] Disaster Assistance: Greater Coordination and an Evaluation of Programs' Outcomes Could Improve Disaster Case Management GAO-09-561, July 8, 2009
[5] Disaster Assistance: Improvements in Providing Federal Disaster Case Management Services Could Help Agencies Better Assist Victims, GAO-10-278T, p. 13, December 02, 2009

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[i] Cahill, A. (2006). Planning tools you can use to meet the needs of people with disabilities in an emergency: What to do, what not to do, and what difference does it make? Paper presented at the Working Conference on Emergency Management and Individuals with Disabilities and the Elderly, Washington, DC.
[ii] newsroom/publications/2006/hurricanes_impact
[iii] Bush Administration, Congressional Republicans Mismanage Hurricane Recovery, supra at note 60.
[iv] Education Rights of Displaced and Homeless Children, Council of Parent Attorneys and Advocates (September 5, 2005), http://www.copaa.org/news/hurricane.html (last visited July 19, 2006).
[v] Principles for Preparedness, Consortium for Citizens with Disabilities (December 20, 2005), http://www.c-c-d.org/Final%20Principles.pdf (Last visited July 19, 2006), at note 72.
[vi] Advocacy, Inc. Report to Texas Equal Access to Justice Foundation, Advocacy, Inc. (October 15, 2005) report on file.
[vii] 42 USC § 11431
[viii] Education Rights of Displaced and Homeless Children, supra at note 75.
[ix] Elizabeth A. Greczek, How to Weave Through the Special Education Maze in the Wake of Hurricane Katrina, Disability Law Resource Project at ILRU (September 28, 2005), http://www.ilru.org/html/training/webcasts/handouts/2005/09-28-Greczek/transcript.txt (Last visited July 19, 2006)
[x] Eva-Marie Ayala, CLASSROOM COPING: Schools addressing special needs of some evacuees by adding more specialized staff, Star-Telegram (September 22, 2005) http://www.jfanow.org/jfanow/index.php?mode=A&id=2571
[xi] Kessler, R. (2007). Hurricane Katrina's impact on the health care of survivors with chronic medical conditions Journal of General Internal Medicine, 22(9), 1225-1230.
[xii] Curry, M. D., Larsen, P. G., Mansfield, C. J., & Leonardo, K. D. (2001). Impacts of a flood disaster on an ambulatory pediatric clinic population. Clinical Pediatrics, 40(10), 572
[xiii] Berggen, R., & Curiel, T. (2006). After the storm: Health care infrastructure in post-Katrina New Orleans. New England Journal of Medicine, 354(15), 1549-1552.

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