**National Council on Disability**

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**Quarterly Meeting: People with Disabilities and Emergency Management**

National Council on Disability\
1331 F Street, NW, Suite 850\
Washington, DC 20004

# 202-272-2004 Voice 202-272-2074 TTY 202-272-2022 Fax

**John R. Vaughn, Chairperson**

**Quarterly Meeting Report**

**January 29, 2008**

**New Orleans, LA**

**Preface**

NCD is an independent federal agency and is composed of 15 members
appointed by the President, by and with the advice and consent of the
Senate. NCD provides advice to the President, Congress, and executive
branch agencies to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or severity of the disability; and empower
individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects of
society.

In carrying out our mission during our quarterly meetings, we believe it
is vital to hear from communities around the country on what works and
what does not for people with disabilities. NCD held its first 2008
Quarterly public hearing/meeting in New Orleans from January 28 to the
30th. Among the agenda items for discussion were emergency preparedness
issues and the disability community. What follows is a report outlining
key issues raised and discussions from invited subject matter experts in
the field of disability and emergency management and public comment.

This monograph represents the proceedings of our January 2008 quarterly
meeting. It is part of a one-year research project on disability issues
and disasters that NCD is conducting. The information in this monograph
is being released at this time for use by people with disabilities,
first responders, policy makers and communities who are actively
involved in using lessons learned to improve their emergency
preparedness efforts.

**Introduction**

Among the agencies represented at the NCD Quarterly meeting in NOLA were
the American Red Cross, Salvation Army, and other local advocacy
agencies. Following is a summarized brief from each agency.

##### *American Red Cross (ARC)*

Kay Wilkins, Chief Executive Officer of the Southeast Chapter of the
American Red Cross, represented the ARC. She reported the following:

-   There were 1,700 volunteers and 49 staff members at the chapter
    prior to Hurricane Katrina. Currently there are 100 volunteers and
    29 staff members. The Friday before Katrina made landfall, the
    chapter activated the internal phone tree to alert the volunteers
    about the potential evacuation of New Orleans and to move host
    shelter areas above Interstate 12 beyond the area of greatest risk.

-   Prior to Katrina, the chapter worked with the faith-based community
    on a program called Operation Brother\'s Keeper. ARC asked the
    faith-based community and congregations to identify the types of
    transportation opportunities available through their congregation
    and then to connect those in need of transportation with those who
    can provide transportation in the event of an evacuation. Initially,
    the chapter believed Operation Bother\'s Keeper helped prepare them
    and communities for the worst-case scenario. However, as Katrina
    revealed, many people who did not evacuate and were rescued had no
    evacuation options and no transportation out.

-   The Saturday before landfall, the chapter left the New Orleans area
    and moved to the Covington area, about 35 miles away. Volunteers and
    staff began opening the first of what would end up being 27 shelters
    by the time Katrina hit, the flood waters from the levees rose, and
    the days after people were rescued from their houses had started. In
    the 90-year history of the chapter, this is the most number of
    shelters to ever have been opened. The chapter began feeding and
    sheltering evacuees on August 26^th^ and continued feeding in the
    city, including providing hot meals, along with ARC's partner
    organizations like Salvation Army, until April 15th.

-   Katrina taught ARC a lot. Generally speaking, the ARC chapter spends
    about six months out of every year preparing for a hurricane
    evacuation in New Orleans. Despite testing plans as often as
    feasible, there were still lessons learned from Katrina. What the
    chapter failed to do was plan for a catastrophic event that would
    not only inundate the city, but also inundate a state, and by the
    time it was completed, inundate an area that was larger than the
    country of England.

-   Post-Katrina, the chapter is currently working hard with the city of
    New Orleans to identify persons with no transportation, and to talk
    through what types of options may be available to those persons.
    Often, it\'s in that one‑to‑one connection, that one‑to‑one
    conversation, where the chapter can identify support systems and
    help individuals gain control of a situation where they feel they
    have no control.

-   Another lesson learned is the need for a strong exit strategy
    including at the personal evacuation planning level. Every citizen
    of New Orleans needs to have a plan to safely evacuate. This
    includes individuals, business, and organizations. Part of ARC's
    efforts in the recovery phase is to build community resilience and
    emphasize personal evacuation strategies, having a disaster supply
    kit, and identifying and planning with support systems.

-   The chapter is also working with the Mayor\'s Office on Disability
    and partnering with other organizations such as Resources for
    Independent Living to improve planning and advocacy for people with
    disabilities. With Resources for Independent Living, ARC is working
    with case managers to identify recovery assistance needs for people
    with disabilities. In addition, ARC is looking at ways to better
    utilize funds and develop plans incorporating the needs of people
    with disabilities. The chapter has tried to advocate with the
    Governor\'s Office of Disability Affairs and its advisory council.
    The chapter is urging them to establish a preparedness committee.

-   Funding for the recovery efforts are dwindling. The American Red
    Cross\' hurricane recovery program will stop in October of this year
    (2008). There is still much infrastructure that needs to be built,
    but funding is starting to disappear.

-   In sum, the most important lesson learned from Hurricane Katrina is
    that everyone needs to be prepared. This includes making certain
    connections, establishing memorandums of understanding, and making
    sure residents have a disaster supply kit.

##### 

##### *Salvation Army*

The Salvation Army was represented by Major Michael Hawley, an officer
serving as the Greater New Orleans Area Commander. He reported the
following:

-   In New Orleans, The Salvation Army has a four‑story shelter on the
    corner of South Claiborne and Napoleon, within view of the
    Superdome. "At the time of Hurricane Katrina, the shelter was full
    of men and women who chose, for whatever reason, not to evacuate the
    city. In addition to the 200 or so occupied beds, the population
    increased over time as a number of people floating by were picked up
    out of the floodwaters." Ultimately 300 men and women scrounged for
    food and air in the hot, humid environment, but they were relatively
    dry and experienced some level of security on the second, third, and
    fourth floors of that building until they were evacuated from the
    roof by helicopter some days later.

-   Overall, The Salvation Army incident commander had coordinated the
    deployment of hundreds of mobile kitchens from all over the country
    in multiple feeding sites throughout the affected area during the
    initial months. This included the mobilization of thousands of
    skilled and unskilled volunteers, officers, soldiers, and staff from
    all over the United States and Canada. It involved communication, as
    much as was possible, with emergency responders, functioning local
    agencies, vendors, and government through available means and
    ultimately meant we appointed men and women to serve as liaisons.

-   Following the initial relief efforts, recovery efforts started.
    Mobile canteens had served the masses and returned home. Properties
    had been secured and made operational for warehousing, distribution,
    and long-term recovery caseworkers. Thousands of citizens were
    meeting weekly with staff ‑‑ case managers, emotional and spiritual
    case managers, and disaster volunteers. The Salvation Army was
    running multiple distribution centers, where furniture, appliances,
    clothing, mattresses, household and personal items, et cetera, were
    being given to people who had the capacity to use it. The list of
    supplies included wheelchairs, scooters, crutches, walkers, hospital
    beds, and other aids for people with a variety of disabilities.

-   Unfortunately, and despite the need, at times services can\'t be
    provided rapidly enough -- this was especially the case after
    Katrina. Consider the massive destruction: 183,000 homes in
    Louisiana qualified for significant recovery dollars. Even on a good
    day, with the infrastructure of the community solidly intact, you
    may need 120 to 180 days to accomplish what\'s needed to replace or
    do the extensive repairs on a house, much less when you\'re working
    with systems that are broken, volunteer or contract labor pools that
    have to scrounge personally for a place to live so they can serve
    and work, or are constantly changing because their two weeks are up
    and they have to go back to school, work, or play. Each of these
    homeowners has had to make adjustments to their lifestyle, including
    for many of them finding somewhere else to live temporarily until
    their home is repaired.

-   The wealthy had some insulation from the impact of the recovery
    because the damage impacted only a fraction of their holdings, but
    for those living paycheck to paycheck or those who had already been
    living with multiple families in their house because of their
    poverty, they may have to literally start over. There are also
    people who have been displaced, those who were not homeowners or
    landholders at all, who no longer had a place to live, or upon
    returning, found that rates had increased dramatically, effectively
    compelling them to relocate, leaving the familiar for unfamiliar
    territory.

##### *Local Advocacy Centers*

Talatha Denison represented the Mississippi Protection and Advocacy
Center and served as a Katrina Aid Today project manager, a position
that resulted from Hurricane Katrina. She reported the following:

-   The Protection and Advocacy Center (P&A) had many lessons learned
    that were shared at the conference. A primary point is that agencies
    must have an emergency preparedness plan and that plans need to be
    tested and ready to put into action. All plans and exercising of
    plans should include contacting the agency staff, via a phone tree,
    or the chosen method of each agency. Three days after the storm, the
    agency was unable to locate workers. There was no power and they had
    to use radios sparingly to preserve the batteries because there was
    no sense as to how long the city would be without power. Most staff
    reported feeling trapped and stuck. In addition, after a disaster,
    agencies should consider not only reaching out to the local
    community and client-base, but to the larger surrounding
    communities.

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-   The agency also realized that a plan should be in place to protect
    client records, agency records, and a plan to evacuate those records
    if needed. It will be equally important to test the plans (i.e., see
    how well client and agency records can be backed-up and moved)
    before the actual event occurs.

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-   P&A staff members were able to access most of the shelters to locate
    clients and check on accessibility issues and needed services. By
    stating who they were as an agency and what the legal mandates of
    the agency are, it allowed staff to gain access. However, although
    P&A was able to gain access, not all agencies were and it also
    became difficult to coordinate services to people with disabilities
    and be aware to not duplicate those services. Moving forward,
    disability agencies need to plan together, evaluate each situation,
    determine how to provide appropriate services, and ultimately to
    avoid duplication of services. In the beginning of the response, P&A
    was able to work with a few other agencies including LIFE and the
    Coalition for Citizens with Disabilities. Through working together
    as essentially a working group, agencies were able to share
    information regarding services and clients. This was very successful
    and an effort that needs to be continued in every disaster and
    emergency. It should be included in emergency preparedness efforts
    across the board.

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-   Another recommendation from P&A is to encourage disability agencies
    to become active members of the State and local Voluntary
    Organizations Active in Disaster (VOAD). P&A currently has a
    representative on the board of the Mississippi VOAD. P&A is the only
    disability agency at that table. It\'s important that disability
    agencies are a part of the VOAD system because it enables
    organizations to coordinate with other agencies, tap into available
    resources, and become more involved with planning, response and
    recovery.

-   The issue of planning for both short-term and long-term needs is
    prominent concerns as well. Many of the problems caused by Katrina
    have not been resolved and are still prevalent today. For example,
    there was a need for equipment for people with disabilities, an
    immediate need after the storm and in shelters. By working with
    LIFE, P&A was able to obtain equipment in some cases including items
    such as hospital beds.

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-   After Katrina hit, Katrina Aid Today (KAT) was established to
    provide funding and coordination of long-term services and case
    management. P&A, along with many organizations, are an active part
    of KAT. Through the KAT program, the P&A case managers have served
    1,713 individuals with disabilities and their families. This number
    refers to intake and assessments that have been completed. Out of
    the 1,713, about 818 cases have been closed. These cases have been
    closed for various reasons including recovery plans being met.
    Unfortunately, some recovery plans were not met because resources
    were not available and are still not available to meet recovery
    needs. A recovery plan basically charts the progress of what each
    individual will need to return home/stay home such as completely
    rebuilding a home or finding accessible affordable housing. There is
    no accessible affordable housing in Mississippi, so that makes a
    recovery plan addressing that issue impossible to achieve right now.

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-   One hundred out of 1,713 clients from the Gulfport Armed Forces
    Retirement Home, evacuated to Washington D.C. where they remain
    today. The National Disability Rights Network contact P&A to assist
    with some of the clients from the retirement home. However, the only
    assistance the agency was able to provide was information and
    additional answers. The agency was not able to move other types of
    services quicker such as expediting the rebuilding of the Gulfport
    home. Staff met with some of the clients who were relocated to D.C.
    and the number one request was to be able to go home to Mississippi.
    Unfortunately, the home is not scheduled to reopen until May
    of 2010. Staff at P&A fear that some clients will not live that
    long.

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-   Initially, KAT provided enough funding for eight case managers at
    P&A, but funding was reallocated last year and the agency was able
    to hire eight more bringing the total to 16 case managers. However,
    as funding is dwindling, the agency lost eight staff members
    recently. Currently there are seven case managers from Mississippi
    P&A providing recovery case management. Through these KAT services,
    the agency has provided 2,099 referrals: 1,923 referrals have been
    utilized; 634 recovery plans have been developed; and 384 cases have
    been presented to the long-term recovery unmet needs committees by
    our agency. \$504,251 in resources has been received through the
    long-term recovery committees based on those presentations.
    \$1,662,896 and change has been provided in services that case
    managers have advocated for clientele. \$9,858 has been used from
    KAT donated funding for client needs.

-   P&A also received donations, part of which has come from a group in
    Seattle called the Total Experience Gospel Choir, that has adopted
    the group. They\'ve been to Mississippi twice to work directly with
    clients on refurbishing their homes or repairing and rebuilding in
    some areas, and sometimes they just go and visit with them to try to
    lift their spirits.

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-   In addition, a casino made a \$50,000 donation to P&A and other
    agencies in Mississippi. That money is primarily used for direct
    services for clients. Case managers have participated in 12
    long-term recovery committees. To date, of the cases that have
    closed, 322 have been due to achieving their recovery plan. One
    hundred and eighty clients have stated that their primary needs were
    met. Two hundred twenty two of these people were unable to resolve
    due to lack of resources, which is almost half of what has been
    closed. 56 clients withdrew their request for services. 29 cases
    were transferred outside of our KAT consortium, and 43 of our
    clients relocated. Disability agencies in Mississippi have worked
    together following Katrina. LIFE, Coalition for Citizens with
    Disabilities, P&A, and others have worked together to address
    emergency preparedness and the recovery issues. Agencies rely on
    each other to meet the recovery needs of clients.

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-   Agencies consider the status of survivors still in crisis. There are
    11,524 FEMA trailers still occupied in Mississippi. FEMA parks are
    currently closing at a rate of two per month in 2008. There\'s money
    available. The Mississippi Gulf Coast Community Foundation money is
    available through long-term recovery committees in the lower six
    counties. This money is accessible only through the long-term
    recovery committees. Thus it\'s only accessible by case managers
    representing clients. Case managers assess needs; verify needs, and
    present cases to the long-term recovery committees for support and
    for funding. Disaster case management is about to end in
    Mississippi. Katrina Aid Today ends March 31 of 2008. Following
    behind that, in April of this year, some of the long-term recovery
    committee funding for case management also ends. And in Jackson
    County, Mississippi, which is one of the lower three counties, that
    completely wipes out the long-term recovery committee. And funding
    that we have received comes through those committees so it will be
    impossible to access it for recovery. Without disaster case
    managers, cases can\'t be worked and presented for funding.

# 1. Lessons Learned

Clearly there were many lessons learned that came out of the tragic
event of Hurricane Katrina. This experience emphasized the importance
for Cities, counties and individuals all across the country to be
involved in their own personal disaster plan. It is important to
recognize that Katrina was an anomaly and extreme event. Most disasters
in the US differ in scale than Katrina. It is important to keep this
perspective as we move forward and continue to face the challenge of
disaster response and recovery and to learn from each experience. This
section outlines lessons learned from Katrina, as well as from other
recent disasters which panelists discussed during the conference.

### **1.1 Healthcare and General Services** 

This section briefly describes what happened in terms of people with
disabilities during Katrina and why it\'s been so difficult now in terms
of reconnection to services.

According to Kathy Kliebert, Assistant Secretary for the State of
Louisiana Office for Citizens with Developmental Disabilities (OCDD),
during Hurricane Katrina, it is estimated there were approximately
13,000 people with developmental disabilities evacuated from NOLA.
Kliebert estimates that there were closer to 200,000 people with
disabilities, evacuated in a short period of time. Since the evacuation
happened so quickly, obtaining exact numbers of how many evacuees were
people with disabilities is very difficult. It also indicates problems
with the evacuation process and that left people without their medical
records, medicines, adaptive equipment, and assistive technology. As a
result, people were dispersed throughout the nation without essential
information and equipment. Kliebert also reports that hospitals were
severely affected with only two facilities operational during the storm
and for months afterwards. As a result, people did not have access to
many essential services immediately after the storm and for people with
certain disabilities and/or medical conditions; this can have dire
consequences on their health and safety.

Since people were re-located all around the country, it was difficult to
help people reconnect. Many people with disabilities relied on human
service organizations to help them reconnect. Specifically, it has been
difficult reconnecting people with developmental disabilities because of
the level of expertise needed to assist this community. Kliebert
estimates that for the first few weeks, her organization was only able
to locate about 10% of their clients; 10 weeks later, her organization
was only able to account for about 70%. Kliebert states that they had a
very poor tracking system in terms of being able to locate people and
communicating with clients making reconnecting clients to services
extremely difficult.

Currently[^1], it is believed by service providers that many people with
disabilities still have not returned to the New Orleans area. Some
service providers attribute this to housing problems acknowledging that
the housing problems extend to the general population as well. However,
for some people with specific disabilities, housing needs may include
retrofitting homes and accessibility issues as well as access to certain
social and medical support systems (i.e., dialysis centers, physicians,
senior centers, etc.) In addition, some people with disabilities face
needing housing that comes with some sort of voucher system or subsidy.
Kliebert mentions that her agency was successful in obtaining permanent,
supportive housing for people with disabilities. The units were
specifically allocated for people with disabilities. What remain missing
are the vouchers that allow for subsidies. This is particularly
problematic because while there are some supportive, permanent housing,
lack of vouchers and the ability to subsidize prevents people who
receive SSI from actually obtaining the housing. This situation has made
it difficult for some people with disabilities to return.

In addition to housing issues preventing people with disabilities from
returning to New Orleans, there are other issues such as lack of service
providers and workforce issues. It was reported by the developmental
disability providers and community home providers specifically that some
agencies simply have not returned. These agencies have found it
difficult to obtain staff and the appropriate resources needed to
provide services. As a result, some individuals are receiving services
from providers located just north of New Orleans, other parts of
Louisiana, and, in some cases, outside of Louisiana. The workforce has
suffered as well both in terms of healthcare workers and direct support
and personal care attendants for people with disabilities. Part of the
issue has been funding to adequately pay trained staff, an ongoing
issue. While some progress regarding salary increases have been made
through legislation, competition is high in the area making recruitment
and retaining personnel challenging. In addition, it had been reported
that healthcare providers have left the area.

Several entities, such as the Department of Health and Hospitals, have
been focusing intensely on recruitment. A study conducted by the
Louisiana Public Health Institute indicated that, for the most part,
major healthcare professionals have returned in sufficient numbers to
the area. However, there seems to still be a lack of specific
specialties. There are still waiting lists of people in need of
specialists. Kliebert reports that some clients will wait months to see
a neurologist. In addition, all healthcare providers do not accept
Medicaid and clients cannot afford to see other providers. At the time
of this report, Louisiana State University Medical School only has four
neurologists on staff. For the 13,000 or so people with developmental
disabilities, this is a significant problem. Longer wait times for
neurologists also means that primary care physicians may try to medicate
and provide services to a population they may not necessarily have the
exact expertise to provide proper care. For example, a lack of expertise
in developmental disabilities makes some of these practices potentially
dangerous; specialists need to be involved, for example, when
neurologists prescribe medications for those with developmental
disabilities. Finally, there are longer wait times in emergency rooms
and general physician care, which is problematic for people who are
medically frail or have serious medical conditions and require a high
level of attention.

### **1.2 Behavioral/Disaster Mental Health** 

It has been reported there is a major shortage of psychologists and
psychiatrists in the New Orleans area. Again, wait times for those types
of specialties can be upwards of four to six months for an initial
appointment. If a client experiences a mental illness or behavioral
crisis must wait, the potential danger to the client and even to the
larger society may increase. Waiting for mental health care often is not
an option for certain people. This has resulted in an increased need for
inpatient beds for people with mental illness in psychiatric facilities,
which are at a premium right now. There is also an increased incidence
of post‑traumatic stress. This is typical for many people with
disabilities, and specifically in the aftermath of Katrina, there have
been some real traumatic situations that many people with disabilities
faced.

[]{.mark}

It was also reported that mental health issues are still on the rise in
Mississippi as well as Louisiana. The further away from the disaster and
the longer the recovery efforts take, the less hope people seem to have.
Most people have stated they continue to deal with bureaucracy and red
tape. Panelists confer that the changes have not occurred in terms of
including the needs of people with mental illness in addition to the
general disability population.

Kliebert reports the following efforts from her agency, Office for
Citizens with Developmental Disabilities (OCDD):

-   The agency continues to evaluate the healthcare shortages and is
    working to put incentives in place to recruit trained personnel in
    the area of disability. The agency is working with new providers to
    give them some expertise.

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-   The agency has an Operation House Call program that was started
    post‑Katrina. The program trains residents by going into homes of
    people with disabilities and working with the families and learning
    about some of their experiences and understanding what it means to
    be a physician dealing with somebody with disabilities.

    -   Other activities include: pay increases, restructuring hospital
        capacity for home and community based services, an increase in
        federally funded healthcare clinics and other clinics in the
        area that are more community based and will have easier access
        for people with disabilities, an increase for waivers, working
        with school‑based health clinics, and training on post‑traumatic
        stress disorders in people with disabilities.

These types of efforts will provide a foundation on which people can
mount a return with the support that they need. In addition, it will
assist people already in the area who need personal care support or
other supports. It has also been reported that there has been some major
funding to increase both mental health services and beds in this area.
However, the damage to the infrastructure was significant. The ability
to retain and obtain resources for people in this area has been
difficult and is still difficult. The rebuilding has been very slow. One
estimate states it will be 2015 before some of the infrastructure really
comes back to the area.

### **1.3 Post-Katrina Rebuilding Efforts** 

The Advocacy Center from New Orleans works on behalf of individuals with
disabilities to achieve access to public buildings and services and
privately run public accommodations. Charles Tubre, from the Advocacy
Center suggests that as with all other aspects of post‑Katrina
rebuilding, it is important that the physical reconstruction of
buildings be achieved carefully and deliberately with attention to the
needs of the individuals with disabilities. Federal and local laws
require that accessibility and removable barriers for people with
disabilities, that they be a part of the rebuilding process. Physical
accessibility has ramifications beyond access to the structure itself.
FEMA funds are being used to rebuild streets, schools, civic centers,
and privately owned buildings. As rebuilding progresses, attention must
be made to increasing accessibility to the community, to the system of
this city, and other communities rebuilding after the storm. The entire
community benefits as access to public works and structures will
increase access to the employment, healthcare, and independence for
people with disabilities. We must ensure that the federal, state, and
local authorities who operate public buildings will fill their
obligation to comply with the laws; the cost of complying with the
relevant laws later will undoubtedly exceed that of getting it right the
first time.

#### 1.4 Building Capacity at the Local Emergency Management Levels

Most disasters in this country are responded to by local offices of
emergency preparedness and not by federal teams. Although we hear more
about the hurricanes, wildfires, earthquakes, and tornadoes that cause
major destruction requiring federal assistance, these are not the most
frequently occurring disasters that require the attention of the local
offices of emergency preparedness. Charles Tubre from the Advocacy
Center (New Orleans) suggests that it is these local offices where the
experts should be offering guidance, expertise, and financial
assistance. Most, if not all, local, parish, or municipalities\' offices
of emergency preparedness want to respond to all of its citizens in
their communities, yet they are not given the tools and the finances to
do so, especially when it comes to disability issues. The same person
who leads the fire department or the police department runs many of
Louisiana's local emergency preparedness offices. These men and women
are stretched too thin to effectively focus on disability issues. They
do not entirely understand these issues or they\'re afraid to address
them due to lack of resources and fear, possibly unfounded, that they
may not be able to afford them.

# 1.5 Preparedness 

All agencies represented at the conference confer that personal as well
as organizational preparedness are key issues. Advocacy agencies
indicated that people with disabilities need to be more involved with
emergency preparedness training and feel it is still not happening
enough. Preparedness should include the establishment of a database with
people with difficulties and who cannot self‑evacuate. In order to make
this type of a database system work, it has to be maintained well so
that the information remains current and useful. One reason for the
biggest loss of lives of senior citizens and people with disabilities
during Katrina was because no one prior to the storm had planned for
these populations adequately, did not know their locations or how to
reach out effectively to them across the country. In addition, there was
a lack of effective communication between the aging and disability
population who were not able to self‑evacuate. Individual reports
describe people with mobility disabilities (e.g., wheelchairs) requested
rescue from emergency responders who were unable to reach them through
the storm or flood. The loss of life within the disability and aging
communities was devastating, a situation that should have been addressed
prior to impact.

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Preparedness efforts with these populations must include the
consideration of durable medical equipment, auxiliary and assistive
devices, and service animals. For example, a lack of accessible
transportation and rescue transport meant that many were rescued without
their wheelchairs, a debilitating consequence. Losing a wheelchair can
take away from independence and a person's ability to be fully mobile.
Some of these individuals who lost their wheelchairs were left in
staging areas sometimes for days. As a result, secondary health
complications arose and in some cases resulted in death.

Red Cross chapters meet with groups and talk to people one on one,
partnering with local officials and telling the story, the very real
story that the only way you\'re going to be assured of having the
supplies you need to keep you and your family safe and to keep you
independent is if you stock them yourselves. The best way people with
disabilities to continue their own independence is to prepare as best
they can. Some other recommendations include:

-   In New Orleans, it was suggested that people with disabilities
    should let specific agencies know of disaster-related needs and the
    type of assistance necessary for evacuation, such as items like
    wheelchairs that need to remain with the person at all times.

-   It is important to be able to communicate with government and other
    organizations the struggles people with disabilities have in both
    preparing for and recovering from disasters.

-   Ensure agencies and organizations that can advocate get involved on
    a local level with various community supports. Together, these
    organizations can begin to identify who is in the community, who
    will need help, who will not have transportation, etc. As was
    suggested earlier, many areas now have local VOADs that bring
    organizations together for the purposes of disaster planning.

After Katrina, and based on lessons learned, the LIFE organization in
Mississippi began working with and teaching people with disabilities how
to create an emergency preparedness kit so that they will have their
needs met. Mississippi continues to serve those with disabilities unable
to return home. The disaster meant they lost social security and
Medicaid cards, medication, etc. Some did not have Social Security
cards, Medicaid cards, enough medication, durable equipment, et cetera,
with them, all which should be included in preparedness kits. LIFE had
to try to meet all those needs as a result. Although a few organizations
have begun preparedness efforts and are working with people with
disabilities, it seems to not be a wide-spread process, which is
problematic.

# 1.6 Building Trust in the Disability Community

Through testimony in the hearing it was noted that Hurricane Katrina was
not only catastrophic in terms of people\'s lives lost due to the
terrible displacement and the consequences of that for people with
disabilities, but what it did was fracture the fabric of trust that
people with disabilities as well as other citizens have in government
resources in the time of emergency. That trust does not exist anymore or
at best is fragile. Rapid reforms have been promised from the Bush
Administration, but according to those still facing the aftermath of
Katrina and other recent disasters for that matter, there is no or
little evidence of significant gains made post-Katrina. It will take
real reform and decades to improve trust within the disability and other
communities as well.

# 

# 1.7 Post Disaster Funding for the Disability Community

While there was a lot of funding sent to Louisiana post-Katrina, there
was not a lot of money specifically for assisting people with
disabilities. The money was not distributed and prorated in terms of
specific services for people with disabilities except for some limited
resources aimed toward housing. In terms of other resources, additional
funding has gone to healthcare services, but again, not specific to
serve those with disabilities. There was specific funding for people
with mental health issues. However, because infrastructure was so
devastated, it has made it difficult to provide these services. The
infrastructure collapse has made it extremely difficult to utilize that
money in an efficient manner.

[]{.mark}

There are some federal agencies that have assisted with getting
particular processes started.

In terms of health issues, Substance Abuse and Mental Health Services
Administration (SAMHSA) has provided funding through grants. The
non-profit community has also been very helpful especially with getting
healthcare professionals in the Louisiana area. Numerous agencies sent
volunteer professionals such as doctors and nurses. While FEMA will try
to support local areas affected by disaster, it also looks to the state
to assist. The new National Disability Coordinator, Cindy Daniel,
indicated that she will be looking into ways in which funding might
support states regarding special needs.

# 1.8 Transportation Issues

Most panelists at the conference agreed that transportation is always an
issue during disasters, especially for the disability, medical and aging
communities. Transportation issues tend to center around evacuations and
re-entry issues. However, during the recovery phase, if proper
transportation infrastructure does not come back quickly, it can cause
many ongoing issues. A local advocate from the Advocacy Center reported
that transportation has been horrendous for people with disabilities
post-Katrina and is a big issue despite efforts by several agencies.

Coupled with housing, the second most important service severely
impacted after the storm\'s aftermath is public transportation. Prior to
Katrina, there were approximately 360 buses in the fixed route public
transit fleet in New Orleans. As of this conference, there are less than
100. Fleet managers and agencies do not have the resources to maintain
properly the buses. Part of the resource issue is tied into housing. If
there is not enough affordable housing, then people cannot return and
the workforce suffers. Essentially, transportation agencies do not have
the maintenance crews that they had prior to Katrina to maintain the
fleets including maintaining accessible transport. Pre‑Katrina, there
were approximately 124,000 daily riders on fixed routes. Today, there
are only 23,000. New Orleans is supposed to receive 39 new low floor
green diesel buses by the spring. This will hopefully help alleviate
some of the ongoing transportation issues. The buses are more spacious,
easier turning radius, and even if the mechanics of the ramp fail to be
deployed automatically, they can be deployed manually, so you don\'t get
caught on a bus that has some sort of mechanical or electrical failure.
In addition to regular transportation, a majority of people with
disabilities receives public transportation services from Paratransit,
which is also overwhelmed.

During evacuations, which in the case of Katrina happened over a series
of days and phases, there were many struggles to find adequate
accessible transportation to take people to appropriate receiving
centers. Registries are in place in various jurisdictions throughout the
country to help identify people who may need assistance during
evacuation, but registries are complex and don't always meet
expectations. For example, the Houston Center for Independent Living
(HCIL) reported that a plan had been devised to develop a database
registry for evacuees who were seniors and people with disabilities and
needed transportation assistance so that they could be picked up,
brought to a staging area, and then to a receiving city. As reported by
HCIL, the database at first was very medically oriented and intrusive
asking more than transportation needs, such as medication information.
Further there were shortages with accessible transportation, the primary
transportation resource was school buses and MetroLift.

[]{.mark}

# 1.9 Housing 

Housing is a major reason why people with disabilities cannot live as
successfully as they did in New Orleans prior to Katrina. It was
reported at the meeting that approximately 123,000 homes were damaged or
destroyed in New Orleans as a result of the hurricane. 82,000 of those
were rental units. An important fact is that New Orleans is
traditionally a city of renters. Katrina destroyed 55% of rental units
in the city. While there has been much loss, there are several programs
that are just now getting into place that will bring some relief in
terms of affordable housing. The Road Home small landlord rental program
brings federal community development block grant dollars for property
restoration. A small percentage of these units will be designated as
both affordable and accessible. Community Development Block Grants
(CDBG) built such incentives into the landlord programs and tied them to
forgivable loans. Rental units must remain at affordable prices for up
to five years. Eventually, about 10,000 affordable rental units will be
available. A small percentage of those units will be not only affordable
but will be accessible, because built into these programs are incentives
for landlords, forgivable loans, that if they agree to rent their
properties at affordable prices for up to five years, then their loan
under this program will be forgiven.

Housing, along with transportation, are the primary problems people with
disabilities are currently facing in Mississippi. The cost of living has
almost doubled on the coast after Katrina. A one‑bedroom apartment, not
necessarily accessible, rents for \$600 to \$900 post-Katrina. Section 8
rentals are also very limited. This has resulted in some tenants not
being able to afford the increases as landlords have doubled their rents
in some cases. Power bills have also increased. It was reported that
some people have not been able to catch up on their utility bills
following Katrina, especially those with disabilities who live on
limited income.

The most current population counts puts 319,000 citizens back in New
Orleans indicating the population has dropped significantly
post‑Katrina. According to Charles Tubre of the Advocacy Center, a
number of those people were not citizens of the city prior to Katrina.
Some estimate that as many as one-sixth (approximately 40,000-50,000
people) of the 319,000 current population may be those helping to
rebuild the city (rather than returning residents).

Essential services were heavily impacted by the aftermath of Katrina
such as public transportation, affordable housing, accessible housing,
healthcare services, and community‑based support workforce that it has
made returning difficult for many but especially for people with
disabilities. As a byproduct of the lack of affordable housing, the
community‑based care workforce is decimated. Pre‑Katrina, there was a
functioning community‑based care workforce. Post‑Katrina, because of the
lack of affordable housing that specifically trained workforce has not
returned to town. And even those who are here report problems getting to
work because of the reduced number of public bus lines.

Kay Wilkins from ARC mentioned that the FEMA trailer villages are
closing in the New Orleans area. ARC has been working with FEMA and HUD
for the last six months on moving people from the trailers to more
permanent housing. They have been working on holding housing fairs to
bring in other case management agencies as well as HUD to identify
options for these families as they move out of FEMA trailers. ARC
continues to work with FEMA in Louisiana. However, it seems illogical to
close the trailer villages when no one has anywhere to go.

Tony Koosis from the Houston Independent Living Center (HILC) also
reported that housing is an ongoing issue. It was one of the
organization's first points of advocacy specifically working with the
housing committee to establish and provide accessible housing. The ILC
developed a checklist based on the Uniform Federal Accessibility
Standards (UFAS) so that people would have basic entry and ability to
move around. There was a good organized effort to try to find accessible
housing, but in the end, people with disabilities took it upon
themselves to find housing and make modifications later.

Mary Lamielle, Executive Director for the National Center for
Environmental Health Strategies in New Jersey, and public health
advocate stated that she fears for the health and vitality of the city
(NOLA) and residents and land and waterways, fires, sewers, molds,
pesticides, disinfectants, which all can cause a host of chemical
injuries, including asthma in healthy people and chemical sensitivity.
Add to that temporary housing that made people sick by toxic
formaldehyde. It\'s a recipe for continued disaster. And of course no
housing is available for those with chemical or electrical
sensitivities.

The Musicians' Village Project is underway and provides 300 affordable
units for musicians in New Orleans, a vital element of local culture.
Other housing under development includes some tax credit developments,
nonprofit development, and \$500 million planned HUD public housing
mixed income development projects. However, construction will take
several years.

## **1.10 Collaboration**

It is critical that organizations and agencies, both NGOs and government
entities, collaborate prior to, during and after a disaster. In
addition, people with disabilities should be included in the
collaborative efforts as volunteers, staff, planners, and organizations.
For example, the Center for Independent Living (CIL) utilizes people
with disabilities as staff, board members and volunteers. In addition,
the CIL tries to recruit individuals with disabilities as AmeriCorps
volunteers. Recommended organizations to collaborate with include:
Centers for Independent Living (state and local if applicable),
Departments of Rehabilitation Services, relief organizations, and
government agencies (local and state) such as Aging, Disability, MRDD,
etc. Some of these agencies assisted in locating consumers/clients,
access to additional services and resources and equipment. Government
agencies are especially helpful in terms of working with NGOs to gain
access to areas where access would be prohibitive. For example,
government entities can assist with ordering and loading trucks with
necessary items, transportation of these items, and coordination. Since
most government agencies are connected with emergency operations, they
have direct access to many resources as well as the ability to deploy
and coordinate as requested and necessary. Again, as mentioned earlier,
VOAD organizations are also focused on greater collaboration among
organizations in planning for disasters.

## **1.11 Shelters**

Accessible shelters are a critical issue for people with disabilities
during and following emergency evacuations. If people with disabilities
cannot access shelters, a whole segment of the population will have no
safe place to reside temporarily during a dangerous situation. This puts
the lives of people with disabilities at risk. Specifically, some
advocates at the conference argued that it should be the law that all
shelters are accessible and that no one should be denied entry into
disaster shelters. There are specific legal issues that need to be
addressed most especially accessible sheltering. All people should be
entitled to a safe place to stay for the duration of an emergency or
disaster.

NCD heard repeatedly throughout the conference meeting in New Orleans
and as well as previous meetings in Boston and other cities since
Katrina that organizations operating shelters, such as ARC and the
Salvation Army, were either not allowing people with disabilities into
the shelters or not making appropriate accommodations for people with
disabilities. It seems while not all shelters were accessible, others
were. Apparently it was a "mixed bag" in terms of accessibility to
shelters and provision of reasonable accommodations. The Advocacy Center
has been trying to deal with this issue for many years prior to Katrina.
When Katrina hit, it was 15 years post Americans with Disabilities Act
and therefore, many in the advocacy community believe that there is no
excuse for shelters to not be fully accessible to individuals with
disabilities.

The issue of access to shelters is an issue for many disability advocacy
groups as well as other service agencies. In Texas, the Houston Center
for Independent Living spent days trying to gain access to the
Astrodome, and had great difficulty identifying the agency to grant such
permission. When the Houston Convention Center was established the
Houston CIL went directly to the facility, asked to speak to the person
in charge, and was then granted permission. The Houston CIL spent about
the next 45 days there with at least two staff members there full time,
answering questions and providing assistance. There were many gaps in
service that the agency identified as well. Additionally, when the
request for wheelchairs was made to the CIL, they were able to get
private donations of money including a major contribution from the
Wheelchair Foundation of almost 300 manual wheelchairs. The Advocacy
Center of New Orleans reported staff was turned away from local
government and ARC run shelters. Some other organizations reported that
they also offered assistance at shelters in Mississippi offering
resources, DMEs and professional staff with expertise in disability.
Some of the organizations were also turned away in Mississippi because
they were not affiliated with government.

These agencies have experience working with the disability population
and identifying services and resources, and once integrated into the
shelter structure can be a tremendous asset to the recovery effort.

In terms of emergency shelters, it is important to have trained
professional staff especially in the area of mental illness and the
needs of the overall disability population. Providing information about
what an individual with a disability needs to have in time of an
emergency, a list of their medications such that they report to a
staging area, they\'re transported out of harm\'s way to a shelter, the
trained staff there would look at those medications, the list, and be
able to provide the oversight or care of that particular population. It
is hoped that would be true of people with physical disabilities as well
as psychiatric disabilities. All of those issues were not addressed
uniformly across the board no matter what the disability. Even for the
elderly, the shelters were not suitable for their needs in terms of the
kinds of cots they had, and other resources. It just did not work for
fragile populations**.**

The issue of storing necessary equipment and assets for shelters also
was raised during the meeting. Some participants felt that storing
assets locally was the best approach. Others argued against that for
logistical reasons. The counter argument rested on the idea that FEMA
could provide funds to ship items including durable medical equipment
(DME) from storage locations into the impacted area. Otherwise, storing
items like wheelchairs could be problematic because of bulk. Charles
Tubre of the Advocacy Center recommended that it may work better to have
a memorandum of understanding between FEMA and suppliers of such
equipment. If some durable medical equipment goes unused and
unmaintained, it might not even be usable when it\'s needed. Rather than
have regional depositories, have contracts with providers, just like
FEMA does with its emergency transportable housing so that they can get
that kind of thing online quickly. Perhaps a combination of such a
memorandum of understanding coupled with an evacuation plan that would
enable consumers to leave their homes in time of an emergency with their
durable medical equipment would be another approach. Then it\'s not an
issue when you get to the shelter that hopefully would be accessible.

Christy Dunaway, Executive Director from the LIFE organization in
Mississippi reported the following experiences:

-   LIFE staff members were deployed throughout the state to go to their
    local shelters mostly run by either ARC or FEMA in addition to
    "unofficial" shelters, like those in local churches that had been
    set up to meet burgeoning needs. LIFE staff spent time at these
    shelters to assess what the needs of people with disabilities who
    had to evacuate from coastal Louisiana and coastal Mississippi. This
    went on for several weeks. In terms of access to shelters, some
    allowed LIFE staff in while others did not.

-   LIFE staff served well over 2,000 to 3,000 people in the first
    couple of months after Katrina in Mississippi because a lot of New
    Orleans people evacuated to Mississippi. Staff were only able to
    accomplish that because disability organizations were extremely
    generous not because of federal, state, or local governments. For
    example, the independent living program out of Houston contacted
    LIFE and provided funds and medical equipment. LIFE obtained other
    significant donations including 18-wheelers full of durable medical
    equipment, power wheelchairs, manual wheelchairs, hospital beds, and
    walkers. In addition, with assistance help from the Department of
    Rehabilitation Services, Mississippi provided warehouse space to
    store the equipment and helped distribute it. Primary assistance
    came from nonprofits and churches. Since Katrina, organizations have
    not seen any significant changes.

## **1.12 Hurricane Rita**

### 

### Evacuation Issues

Coming off the heels of Hurricane Katrina prompted people to evacuate
even in communities where government officials were saying they didn't
need to evacuate. Within a few hours after the evacuation started, in
Texas authorities made all the highways going in one direction out and
posted guards and sentries to make sure nobody would go the other way.
One specific lesson learned from the evacuation included a need for more
access to gas for refueling, and food locations along the evacuation
route.

Initially, the State of Texas began to utilize the 2-1-1 system[^2] and
encouraged individuals with special needs to use it to register their
location prior to landfall. Two days before the storm, the Center for
Independent Living assigned volunteers and staff members to call all
consumers and to let them know they could register with the 211 system
and request transportation assistance. Unfortunately, 48 hours in
advance of the hurricane, the 211 system had been turned off. This
caused a lot of confusion and tied up local city and county lines. The
State of Texas learned a lot from this experience and now begin the
pre-positioning and pre-storm planning process 10 days in advance.

[]{.mark}

## **1.13 2007 California Wildfires** 

Experts at the conference confer that while there were improvements
during the response and recovery efforts during the 2007 Wildfires, it
still cannot be compared to the events of Hurricane Katrina. The FEMA
National Disability Coordinator, Cindy Daniel, reported that she was
able to put things in place before she was deployed to California during
the wildfire response. The communication was already taking place while
during Katrina, it was not. Working with other groups such as the
Interagency Coordinating Council (ICC), Cindy Daniels was able to
collaborate better including holding daily conference calls regarding
what the needs were within the disability community.

The team was also able to go to shelters to assess the situation as well
as working on obtaining durable medical equipment. People with
disabilities were taken from wheelchairs to cots and sometimes lost
their DMEs. The team worked hard to help people who lost DMEs get them
back as well as work on educating relief workers that people could not
be separated from their wheelchairs, canes, service animals, other DMEs,
etc. In addition, the team was able to establish pet shelters next to
general population shelters. Daniel's reported that there were no
"special needs" shelters because, through collaborative efforts, people
with disabilities were accommodated and provided for in established
shelters. The team was able to transport people back and forth from the
shelter to temporary housing, which was accessible. Currently (January
2008), FEMA has 400 people already with applications and being served.
FEMA provided motorized wheelchairs, manual wheelchairs, raised toilet
seats, grab bars, TTYs, hearing aids, and dentures.

# 2. National Council on Disability: Next Steps 

**2.1 2008-2009 Research Project**

NCD is conducting a one-year research project on disability issues and
disasters. The project has been organized into different discreet topic
areas that will be researched, analyzed and reviewed over the course of
the year. These so-called mini-lit reviews, or chapters, will be drafted
one at a time, and while in review the next topic area will be in
progress, which will allow NCD to identify issues early on that should
be further researched. To conduct the research a multidisciplinary
approach is used to review a wide variety of materials. This means
journals of medicine, journals of emergency management, journals from
human services and social service delivery. It does not mean staying to
one academic discipline but rather stretching it as far and wide as to
potentially capture those references that might have been lost in the
initial review process. This includes a review of existing materials,
new and current materials (incorporated as they are being published),
and after action reports including any disasters that occur during the
course of the project.

The result of this project will be a robust annotated bibliography,
which also includes a synthesis and analysis of the findings and
recommendations. This is the first of it's kind and will be a great
resource, with a wealth of information for furthering the process of
research.

# 

#### 3. Conclusion Analysis

-   There are significant lessons learned resulting from Hurricanes
    Katrina, Rita, and the recent 2007 California Wildfires. Much of the
    information shared during this hearing not only indicates the
    challenges with response directly after Hurricane Katrina, but
    addresses the long term effects as can be documented at the time of
    this hearing, two and a half years later. There is still a pressing
    need for coordinating national efforts with FEMA, Department of
    Homeland Security, and DOJ, among others, to implement the
    identified needed services that people impacted by Katrina once had
    access to but no longer do. During the hearing, there was an
    indication that, to this day, a great deal of anger and
    disappointment is directed at both federal officials and state
    officials and certainly the municipal officials for their failure to
    plan for and respond to its citizens with disabilities after
    Katrina.

-   Though there is new guidance available and new criteria developed
    around special needs planning, via the federal government, this has
    come to the states and locals without funding and resources to carry
    out what is specified in the guidance. The worry is that local
    jurisdictions are being set up to fail and not meet new criteria.
    There is also criticism of the NRF that provides a framework but
    does not set up mandates or provide clear direction to the states
    and local jurisdictions about how to operationalize the concepts.

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-   A theme that emerged from the hearing is the need for greater
    coordination among agencies and particularly more involvement and
    integration of disability organizations in emergency planning
    efforts. The federally funded centers for independent living,
    Statewide Independent Living Councils, P&A services, other
    disability organizations, and others should be at the table when
    disaster plans are being made and when disaster relief is being
    coordinated. These efforts have to be coordinated with local and
    state emergency management officials, to ensure integration,
    collaboration, and cooperation before, during and after emergencies.
    For example, putting MOUs in place prior to the disasters for a
    range of services and resources with agencies including: specialized
    equipment; accessible transportation; access to shelters; providing
    assistance in recovery centers; etc.

-   The importance of personal preparedness was stressed by several
    people through testimony during the hearing. It was stressed that
    people will be able to respond to and recover from disasters if they
    take steps to be prepared. Several suggestions were made that
    organizations and agencies that work directly with people with
    disabilities and other special needs spread the message and actively
    engage their clients in personal preparedness activities.

-   There are many people with disabilities or other special needs that
    are still waiting for equipment, housing, healthcare, and need of
    other essential services, but many of the casework agencies are
    closing. Funding is now limited or no longer available to provide
    the assistance that is still needed.

-   The lack of or limited access to critical infrastructure -- such as
    transportation and housing -- is still keeping people with
    disabilities (and others) from returning home. Without this
    infrastructure coupled with lack of specialized health care, mental
    health services, etc. people are not able to return to NOLA.

**References**

Davis, Elizabeth A., Green, Max, Hansen, Rebecca, & Mincin, Jennifer
(2007). EAD & Associates, LLC's Special Needs Toolkit.

Davis, Elizabeth & Mincin, Jennifer (2005). Nobody Left Behind.

Department of Homeland Security Interagency Coordinating Council:
<http://www.dhs.gov/xprepresp/committees/editorial_0592.shtm>

FEMA: <http://www.fema.gov/about/bios/rpaulison.shtm>

[^1]: This was reported at the time of the NCD Quarterly meeting on
    January 29, 2008.

[^2]:
    > 2-1-1 is an easy to remember telephone number that, where
    > available, connects people with important community services and
    > volunteer opportunities. The implementation of 2-1-1 is being
    > spearheaded by United Ways and comprehensive and specialized
    > information and referral agencies in states and local communities.
    > United Way of America (UWA) and the Alliance for Information and
    > Referral Systems (AIRS) strongly support federal funding so that
    > every American has access to this essential service. For more
    > information, go to <http://www.211.org/>.