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    Emergency Preparedness for People with Disabilities in New York

    September 2004


Summary of Report


Section 1: The Center for Independence of the Disabled in New York‘s Response to

    the World Trade Center Disaster

Section 2: How the Impact of Disasters on People with Disabilities Differs from the

    Impact on the General Population

    o Example 1: Access to the Frozen Zone After 9/11

    o Example 2: Mental Health Needs

    Section 3: Learning from Experience Successful Strategies from 9/11 and the

    2003 Blackout

Section 4: Learning from Experience -- Lessons that Should Have Been Learned

    Before September 11

Section 5: Recommendations


    Center for Independence of the Disabled in New York Page 1 of 34


    Emergency Preparedness for People with Disabilities in New York

    September 2004


There were a number of lessons learned during and immediately after 9/11 about preparation and

    accommodations for people with disabilities. The most prominent and disturbing conclusion was that --

    despite the fact that many of these lessons had been learned before 9/11 -- systemic preparation

    conceived of or conducted by mainstream emergency responders and relief agencies did not consistently

    take into account the specific needs of people with disabilities.

Every individual is entitled to equal access to available services, particularly those related to emergency

    response and recovery activities. As such, relief agencies and other service providers are responsible for

    ensuring appropriate accommodations that allow people with disabilities the same chance as other

    members of the public to survive and recover from disasters. To achieve this equity, the following

    recommendations are made:

? Emergency responders, as well as relief and other service agencies, must incorporate

    into their planning and operations an appropriate strategy for ensuring equitable access

    to response and recovery services. Emergency planning by individual employers, landlords and

    organizations should include purchasing and training staff in the use of evacuation and other

    emergency equipment appropriate for people with disabilities. Emergency professionals should rely

    on the disability community to advise them on which types of equipment are best.

? Relief agencies cannot wait until they are in the middle of a disaster to start training

    their staff in disability awareness. Train volunteers and staff ahead of time in basic disability

    awareness and etiquette, and in how to accommodate needs that commonly arise for people with


? The day after a disaster is too late for agencies to start doing outreach to make their

    services known to people with disabilities. It is necessary to communicate with members of

    the disability community:

    - On an ongoing basis, as part of a preparedness outreach effort;

    - Before an event, to warn about an emergency;

    - During an event, to give information and instruction about the emergency; or

    - After an event, the give information about recovering from the emergency.

? During the recovery phase, there must be a priority to restore or address those services

    and needs most critical to people with disabilities, especially related to access to home

    attendants, assistive equipment, medication, accessible transportation and temporary

    shelter, and food delivery.


    Center for Independence of the Disabled in New York Page 2 of 34


Any disaster will, by definition, disrupt lives. Still, some response and recovery issues are predictable,

    common to many disasters and crisis situations: these are the ones that can be successfully minimized

    through pre-crisis planning and preparation.

For people with disabilities, however, existing disaster response and recovery measures are significantly

    less successful, given that little systemic preparation is conceived of or conducted by mainstream

    emergency responders with their specific needs in mind. In fact, most of the planning related to

    emergency measures for people with disabilities consists of lists of things that consumers and their

    advocates should do a practical first step, but one that clearly requires additional substantial support by

    emergency responders who have incorporated into their planning and operations an appropriate strategy

    for ensuring equitable access to response and recovery services.

The Center for Independence of the Disabled in New York (CIDNY) supports all efforts to help people

    with disabilities prepare themselves for emergencies, an approach that coincides with its fundamental

    mission of assisting consumers in achieving maximum independence. CIDNY has distributed thousands

    of brochures with advice and checklists on disaster preparedness to consumers and sister agencies

    working with the disability community. CIDNY actively provides technical assistance to government and

    other social service agencies on ways in which to assist people with disabilities during and after

    emergency situations. To strengthen this effort, this report focuses on what relief agencies and other

    service providers can do -- and have done -- to give people with disabilities the same chance as other

    members of the public to survive and recover from disasters.

     [Former Executive Director] Scheer says CIDNY has realized it has a

    large constituency of people with disabilities who are not traditionally

    considered independent living consumers.

    We‘ve come to know a lot of people,‘ she says, ‗who were doing their

    own things and had successfully created their own support networks. When

    their support systems crumbled -- as they so dramatically did [on 9/11] --

    many still thought they could work things out themselves. But as things

    dragged on, they found they needed assistance.

    ―9-11 Offers Important Lessons in Disaster Preparedness,‖

    By Richard Petty, ILRU Network, January 2002


    Center for Independence of the Disabled in New York Page 3 of 34



Like most New Yorkers, Susan Scheer, the former Executive Director of CIDNY, remembers September th very clearly: 11

    When the first plane hit, we were in a staff meeting at CIDNY. We heard something about the

    World Trade Center before we went into the meeting. When we came out, there was all this

    news about the building being on fire and people evacuating. Everybody got on the phone to call

    our consumers, and I had the staff print out everything they could I had a feeling we might not

    be able to get to the computers for a while. We wrote down each other‘s phone numbers and

    beeper numbers. Then I told people they could go home. Those who couldn‘t make it home

    arranged to stay with staff members who lived nearby.

It quickly became clear that, as the independent living center closest to the World Trade Center, CIDNY

    would be the leading service coordinator for people with disabilities who were affected by the September th 11attacks. In addition to helping individuals with disabilities -- whether they were disabled before or as

    a result of the WTC incident -- CIDNY became a leading source of information on disability issues for the

    many private and public entities participating in the massive response and recovery effort.

     thCIDNY was located just inside the border of the so-called ―Frozen Zone. On September 12, CIDNY staffers were not allowed back in the building that housed their office until late in the day. There were

    no phones, no electricity.

    ―For the first few days,‖ Scheer recalls, ―we were just ‗putting out fires.‘ We began hearing from our consumers, and then they started telling us about other people in their buildings who were in trouble….

    All our deaf consumers showed up right away, to find out what was happening. There was this chaos on

    TV and they didn‘t understand what it meant.‖

    Traumatized, forced to evacuate their own headquarters and limited by

    disrupted phone services and other utilities, CIDNY‘s staff was in no position

    to launch an immediate emergency response. At the same time, state

    agencies that Williams [Executive Director of the New York State Independent

    Living Council] thought would be involved in responding to people with

    disabilities during the crisis seemed to be waiting for someone to tell them

    what to do. Frustrated, Williams called the National Council on Independent

    Living (NCIL) for help.

    NCIL‘s Marcie Roth called the White House disability liaison who, in

    turn, began contacting federal agencies and the New York governor‘s office.

    Finally, Williams says, the state agencies kicked into gear ten days to two

    weeks after the attacks.

    ―NYSILC Crisis Response Plan Focused on Communication, Coordination–

    And Returning Control as Soon as Possible,‖ in ILRU Network, January 2002


    Center for Independence of the Disabled in New York Page 4 of 34

In immediate response to the disaster, CIDNY played a central role in gathering information about the

    needs of people with disabilities and communicating that information to the media and to agencies and

    authorities controlling the delivery of disaster recovery services. CIDNY further advised local hospitals

    treating survivors of the attack to refer those who were newly disabled to the agency.

CIDNY‘s small staff was stretched to its limit by the addition of so many new consumers with urgent and

    complex needs. Soon, volunteers were recruited, along with a dedicated coordinator, to manage CIDNY‘s

    disaster recovery efforts, including the logistics of storing and distributing an outpouring of donated

    assistive equipment and medical supplies. Several new counselors were hired, and other staff diverted

    much of their time to counseling and other activities related to the WTC incident.

     th still counted on the agency Meanwhile, hundreds of consumers not directly affected by September 11for assistance. According to Sharon Shapiro, CIDNY‘s then Assistant Director, it was a struggle to maintain the agency‘s regular programs during the initial disaster recovery period.

    ―Landlords didn‘t stop evicting tenants, and hearings with Social Security and HRA kept coming up,‖ stated Ms. Shapiro. She also noted that CIDNY‘s regular clients those who were not directly involved

    in the disaster were fearful and had a greater need for counseling after the attack, mirroring the

    unease and anxiety experienced by all New Yorkers.

The agency rapidly developed a Disaster Relief Services program, encompassing three major activities:

    ? Direct services, particularly case management for people with disabilities affected by or who were

    newly-disabled by the WTC incident;

    ? Education, training and technical assistance to relief and other service-providing agencies; and

    ? Outreach to people with disabilities who did not come forward seeking help in the first weeks or

    months after the attack.

     thDirect Services for People with Disabilities Affected by September 11

    1. Case management and other direct services

CIDNY‘s staff provided a broad array of services in assisting people with disabilities in the aftermath of

    the WTC incident:

    ? Comprehensive situational assessments of consumer needs, in such areas as health care,

    finances, mobility, transportation, assistive technology, child care, family relations, emotional and

    mental health, employment, and legal matters.

    ? Crisis intervention, providing immediate assistance in urgent situations, including service

    coordination for accessing federal, state, and private disaster relief programs.

    ? Peer counseling and referrals to specialized mental health services, as needed.

    ? Referral and advocacy for consumers and their families for appropriate benefits, entitlements and

    services provided by other governmental and private agencies.

    ? Home visits to consumers requiring peer support and/or needing help to complete applications

    for disaster relief and environmental clean-up services.


    Center for Independence of the Disabled in New York Page 5 of 34

    KR, a 21-year-old woman with an existing traumatic brain injury, was expecting a visit from the Homebound Unit of NYC‘s Human Resources th, to determine her eligibility for public Administration (HRA) on September 11assistance. She lived close enough to the site to see the attack and was highly

    traumatized by what she saw. Just when she needed assistance the most,

    HRA cancelled its visit because of the disaster.

    She contacted CIDNY in early October 2001, needing emergency food and cash assistance. The agency sent a volunteer to her apartment, bringing

    food and money, as well as helping her apply for assistance from various relief


    Within two weeks, the Red Cross gave her food, clothing, and a ―comfort kit,‖ and agreed to help her find alternative housing. In the

    meantime, they did not assist with rent in her existing apartment, so she ran

    the risk of eviction. CIDNY assisted KR with obtaining rental assistance from

    FEMA and signing up for Section 8 housing, which normally has a waiting list

    of up to 10 years. She was not eligible for emergency income replacement

    because she had no income before the disaster.

    CIDNY consumer case file

2. Services for Newly Disabled People

Newly disabled people faced social isolation, often stemming from mobility issues and mental

    health concerns like depression, anxiety and stress. Those who found their way to CIDNY were

    advised about making housing adaptations; using the vocational rehabilitation system; assistive

    technology; managing medical concerns and costs; learning to consider accessible facilities and

    transportation in planning daily life; and acquiring re-training or assistance with basic activities

    like personal care, household tasks, communication and travel.

    NM was a temporary employee located in a World Trade Center office. thShe never arrived at work on September 11; she was trampled by the

    escaping crowd, which knocked her unconscious, broke her collarbone, and

    badly bruised her legs and back.

    At first, NM managed, on her own, to obtain Disaster Unemployment benefits, a month‘s rent and $50 for food from the Red Cross, as well as

    coverage for her prescriptions from the Crime Victims Fund. She contacted

    CIDNY a week after the attack, asking for help in applying for Disaster Relief

    Medicaid; at this point, she felt overwhelmed by the physical and emotional

    effects of her ordeal and unready to navigate the bureaucratic process of

    seeking additional assistance. She had not yet thought about long-term needs

    for health coverage, transportation, and finding new employment.

    CIDNY consumer case file


    Center for Independence of the Disabled in New York Page 6 of 34

    JC is a 45 year old, Hispanic man who was working as a hotel employee

    in the World Financial Center on September 11, 2001. The father of four, JC

    became unemployed after the WTC incident, not only because of the

    destruction of his place of employment, but also due to a severe injury to his

    legs and the exacerbation of an existing liver condition caused by the attacks.

    His health was further worsened by the onset of post-traumatic stress.

    At the time he was referred to CIDNY, JC‘s case had been closed by

    another disaster relief agency due to that agency‘s determination that he had

    failed to comply with a service plan. Over the course of three months, CIDNY

    assisted JC in (1) successfully reapplying for disaster relief funds from Safe

    Horizon, (2) completing an application for the American Red Cross Additional

    Assistance Program, and (3) receiving information and counseling about

    refinancing his mortgage with a low-interest rehabilitation loan. In addition,

    as JC begins his transition from disaster relief assistance to longer-term case

    management, CIDNY continues to work with him on issues related to Social

    Security Disability recertification and access to public health insurance for

    himself and his family.

     CIDNY consumer case file

    3. Removing Barriers to Full Integration by Relief and Service-Providing Organizations

    From the outset, lack of appropriate access and accommodations for people with disabilities seeking response and recovery services in the aftermath of the WTC attack was evident, reflecting, among other factors, methods of program administration that disregarded needs specific to those with physical, medical, cognitive or psychiatric conditions. Through its work with WTC consumers, CIDNY identified a series of administrative procedures that resulted in inappropriate service denials with a wide range of public and private agencies. CIDNY also observed that agencies lacked disability-related information.

    In particular, people with disabilities effected by the WTC attack were unable to access services because, for example: they could not read signs, they lacked access to ASL translation at service and disaster sites, there were no TTY system set up for reaching specific hotlines, there was a disregard for reimbursement of assistive technology destroyed in the attack, and there was a lack of effort to make visits to homebound consumers to assist with disaster relief paper work.

    CIDNY received a call from a displaced Battery Park City resident with

    a mobility impairment. She had called FEMA to register and assess damage to

    her apartment. FEMA regulations required that she meet the FEMA

    representative at her apartment to assess damage. For the consumer, this

    was physically impossible, particularly given debris and other barriers situated

    around the vicinity of the WTC attack. When she was unable to comply, FEMA

    closed her case. CIDNY successfully advocated with FEMA to establish a

    waiver of this requirement for people with mobility impairments.

    CIDNY consumer case file


    Center for Independence of the Disabled in New York Page 7 of 34

    MR, a person living with mental illness and an orthopedic disability,

    lived downtown. She had received the offer of a new job in the downtown th. area and was on her way to a meeting about the job on September 11When the attack occurred, MR was near the collapsing buildings and knocked

    over by people fleeing the scene, sustaining back and ankle injuries that

    exacerbated her existing orthopedic condition. Moreover, MR and her son

    were displaced from their apartment for many months, which was covered

    with dust and debris from the disaster.

    MR came to CIDNY in late September 2001. Due to her physical

    disability, it was impossible for her to register for assistance with the Red

    Cross, as applicants were expected to stand in long lines to meet with relief

    workers in person. She had asked for an accommodation, but was told that

    she would have to wait with the other applicants if she expected help. In

    response, CIDNY arranged for MR to be registered at the Carmine Center, the

    only accessible site of all the locations dispensing disaster relief assistance.

    CIDNY consumer case file

Education, Training & Technical Assistance to Other Relief Agencies

As indicated, through direct services to consumers -- and from inquiries and reports from other service

    providers -- CIDNY was able to track systemic and policy issues affecting service delivery to people with

    disabilities. The agency responded to these issues by:

    ? Participating in the United Services Group (USG), a coalition of disaster relief and service-providing

    agencies that met periodically to share information, discuss policy, and plan actions. CIDNY

    participated in the USG‘s Case Management Working Group, Technology Committee, Training

    Committee, Public Relations Committee and Service Coordinator Steering Committee.

    ? Creating and distributing basic informational materials to other agencies about disability issues,

    benefits and resources, as well as materials specific to serving ―hard-to-reach‖ populations.

    ? Offering education and training workshops to other agencies, and assisting them in integrating

    materials on disability awareness and the impact of having a newly-acquired disability into their own

    training and orientation programs.

    ? Answering questions from individual service coordinators at other agencies about disabled World Trade

    Center consumers among their caseload, and accompanying consumers to meetings with other service

    or benefits providers as their advocate.


    Center for Independence of the Disabled in New York Page 8 of 34

    In the first months after the attack, CIDNY conducted daily conference

    calls with FEMA and the Red Cross. One major issue was the need for

    accommodations at the Disaster Assistance Centers, where people applied for

    assistance from dozens of government and private relief agencies. Multiple

    visits were often required. Many people with disabilities were unable to apply

    for benefits because they could not stand on line for the long periods of time

    required. At the start, there were no chairs at centers, and people were not

    allowed to send representatives to file applications on their behalf, even if

    they were homebound prior to the attack.

    FEMA did not see a need for accommodations because, as one CIDNY

    staffer recalled, ―They said they had received 10,000 applications and none

    were from people with disabilities. But they had taken the question on

    disability out of their screening interviews to save time.‖ Eventually, FEMA

    restored the disability screening question, making it possible for them to track

    applications from people with disabilities.

     CIDNY staff notes

    One relief agency sponsored a support group for survivors and family

    members experiencing post-traumatic stress disorder (PTSD). Meetings were

    held in a location that was not accessible to wheelchair users. CIDNY advised

    the agency on how to serve people with both mobility impairments and PTSD,

    including strategies for attaining cooperation of the building management in

    making meeting space accessible or relocating the meetings, as well as the

    benefits of telephone-based support groups for those unable to attend in

    person due to psychiatric symptoms.

    CIDNY staff notes

    People at the Red Cross were polite and interested, but everything had

    to be brought to their attention. Their volunteers were from all over the

    country. They didn‘t understand transportation issues for people with

    disabilities in New York City. They would say, ―Can‘t they get a neighbor to

    drive them?‖ and we‘d have to keep telling them that the neighbors don‘t

    have cars.

    Recollection from Susan Scheer, June 24, 2004


    Center for Independence of the Disabled in New York Page 9 of 34

    Outreach Activities

    CIDNY‘s outreach activities reflected four principal strategies: direct outreach to potential consumers and

    their advocates; media outreach through articles and public service announcements; distribution of ―tip

    cards‖ offering key information; and outreach through the internet.

    1. Direct outreach: After the first few weeks, it became clear that many people with disabilities

    were not coming forth for assistance, for reasons CIDNY identified as:

    ? being more isolated than the public at large, due to limited access to communication and to

    mobility impairments;

    ? not feeling welcome at organizations that make no obvious effort to reach or include them; and

    ? not considering themselves to be ―people with disabilities,‖ despite needing and being entitled to

    services or benefits based on a disabling condition.

CIDNY began outreach to identify consumers and engage them in services. In late October, efforts

    were made to identify overlooked groups of elderly and/or disabled people living in the downtown/

    Chinatown area. In November, several Mandarin-speaking volunteers were recruited, and written

    outreach materials began to be translated into Mandarin. CIDNY staff explained disaster relief issues

    for people with disabilities to groups of employees from other agencies, including those at a Disaster

    Preparation Conference held at the Manhattan Veterans‘ Administration Hospital and to caseworkers

    attending a conference of the United Services Group, both in January 2002. Other efforts included:

? in-person distribution of written materials related to disaster relief programs and CIDNY services

    in the lobbies of housing facilities, as well as to building management offices, health clinics and

    neighborhood community centers;

    ? discussions with building managers to help identify tenants known to them to be homebound or

    disabled and then distributing disaster relief materials to those persons;

    ? attending consumer-initiated group meetings to provide support and disaster relief information;

    ? working with the American Red Cross and FEMA representatives to arrange to identify dedicated

    liaisons on their staff to work with elderly and/or disabled Lower Manhattan residents; and

    ? distribution of letters with instructions on how to register with the EPA for environmental

    inspections and assistance to every person in CIDNY‘s consumer records database residing in

    designated zip code areas.

Other outreach sites included hospitals and clinics specifically serving World Trade Center-affected

    populations, including several large hospitals providing health screening and medical care to World

    Trade Center recovery and volunteer workers with emerging respiratory difficulties, skin lesions, post-

    traumatic stress syndrome and other problems. CIDNY worked closely with Mt. Sinai‘s Selikoff Center

    for Occupational and Environmental Medicine, whose social workers began to refer consumers to

    CIDNY‘s WTC Service Coordination Program and benefits-related workshops.

    2. Media and public relations: Articles and public service announcements were targeted to media accessible to consumers of varying sensory capacity, including those with speaking languages other

    than English. CIDNY assisted reporters covering the disaster.

? Newspapers: The Wall Street Journal, the New York Times, ABLE

    ? A story recounting ongoing issues for a CIDNY consumer was broadcast on 44 New York State

    radio stations on September 10, 2003. The story was picked up by CBS Radio News Network and

    broadcast nationwide on another 726 stations.

    ? Information posted on CIDNY‘s and other metropolitan New York independent living centers‘

    websites, as well as on the USG‘s public website.


    Center for Independence of the Disabled in New York Page 10 of 34

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