Statement of Marcie Roth, Executive Director, National Spinal Cord Injury Association

House Committee on Ways and Means

Statement of Marcie Roth, Executive Director, National Spinal Cord Injury Association, Bethesda, Maryland
Testimony Before the Subcommittee on Oversightof the House Committee on Ways and Means
December 13, 2005
http://waysandmeans.house.gov/hearings.asp?formmode=printfriendly&id=4574
Good Afternoon Chairman Ramstad, Ranking Member Lewis, and distinguished committee members. Thank you for inviting me to testify on issues regarding the response by nonprofit organizations to the needs of Hurricane Katrina survivors.
My name is Marcie Roth and I am the Executive Director and CEO of the National Spinal Cord Injury Association (NSCIA). NSCIA is the nation’s oldest and largest civilian organization serving the needs of people with spinal cord injuries and spinal cord diseases since 1948.
I am here representing NSCIA, but I want to be very clear that in our disaster relief efforts we have been working on behalf of ALL people with disabilities, including those with sensory and intellectual disabilities and those with mental illness and other psychiatric disabilities.
And, although we are focusing on efforts to assist Americans with disabilities in disasters, we are also wholly committed to working with others who are addressing the needs of ALL people with disabilities in disasters in other parts of the world.
I want to thank my colleagues in the private sector and those representing government, who have given those of us who are experts on the additional needs of people with disabilities before, during and after a disaster the opportunity to work alongside you over the past fifteen weeks as we have shared our knowledge, resources and a deep commitment to meeting the critical needs of as many hurricane survivors with disabilities as we possibly could. I am grateful to those individuals who have joined us around the clock, for many weeks, in a shared commitment to do what no one else was doing, despite their legal and moral obligations, to meet the additional needs of hurricane survivors with disabilities.
On September 13, 2001, I first became involved in navigating between the Federal systems and the private sector in an effort to address the very urgent disaster related needs of people with disabilities who had survived the terrorist attacks in New York City two days earlier. I quickly learned that a lifetime of knowledge of the additional needs of people with disabilities was being called into action as I found myself in the breach, navigating between the very real needs of very real people and the limited public and private systems poorly designed to address those needs.
I was shocked when I discovered how ill prepared the major disaster relief agencies were, and I became actively involved in efforts to assist those relief agencies and communities across the US to better plan for the additional needs of people with disabilities. In the months and years after those terrible days, I also participated in efforts to assist people with disabilities to prepare for another emergency. I saw the creation of the US Department of Homeland Security, the relocation of FEMA and the National Disaster Medical System, and many printed and internet published materials on preparedness for people with disabilities, workshops and conferences on the topic, and many other visible signs that indicated to me that high level planning for the next national disaster was in good hands. I did my part, made recommendations when the needs of people with disabilities were being overlooked and voiced my concerns when it seemed that plans were unrealistic. Even when the ideas of disability and disaster experts were being met with a surprising amount of resistance and exclusion, I trusted that even though I couldn’t always see it, we were “ready”. Just like most Americans, I assumed that the Red Cross and the other major relief organizations were building on something far more durable than sand when they published guides and booklets and held meetings and workshops on emergency preparedness for people with disabilities.
And then, in the last week of August, I joined much of America as we watched with more than a little alarm as Hurricane Katrina took a bite out of FL and then made its way into the Gulf.
On the morning of August 29th, I received a call that I will never forget and once I tell you about it, I hope you will never forget it either. My friend and colleague, former appointee to the Social Security Administration, Susan Daniels called me to enlist my help because her sister-in-law, Benilda Caixetta, a New Orleans resident who was quadriplegic, paralyzed from the shoulders down, had been unsuccessfully trying to evacuate to the Superdome for two days. Despite repeated requests to be evacuated, in her power wheelchair, which is a vital tool for mobility and independence, the paratransit system that serves the transportation needs of people with disabilities never showed up. Even calls to 911 had been fruitless. She was still in her home, she had not been able to evacuate, despite her very best efforts. In my naiveté I thought a few phone calls to the “right” people would help, and I was sure I knew who to call. I was wrong. After many calls to the “right” people, it was clear that Benny, was NOT being evacuated.
I stayed on the phone with Benny for most of the day, assuring her that I was doing all I could to make sure help would be coming as soon as possible. She kept telling me she had been calling for a ride to the Superdome for three days, but, despite promises, no one came. The very same paratransit system that people with disabilities can’t rely on in good weather was what was being relied on in the evacuation. It’s no surprise that it failed.
I was on the phone with her that afternoon when she told me, with panic in her voice, “the water is rushing in” and then her phone went dead.
We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair.
Sometimes things like this can’t be prevented. Despite the magnitude of the catastrophe, this was not one of those times. Benilda did not have to drown.
I am here today to say some other difficult things, and while there are many organizations worth comment, I will focus almost exclusively today on one of the biggest, best funded and most beloved non-profit organizations of all, the American Red Cross. It feels almost blasphemous to criticize the Red Cross, almost like criticizing one’s own grandparents. But, for hundreds of thousands of people with disabilities, the Red Cross has frequently failed to meet the greatest needs while simultaneously diverting donations and other resources from small organizations left to address a myriad of often complex unmet needs. Not only has this hurt people with disabilities and the organizations that serve them, but it has also added an untold burden on every taxpayer in this country, through costs associated with preventable secondary complications in disaster survivors, unnecessary hospitalization and institutionalization and failure to maximize limited resources to meet needs.
Over the past 100+ days, while the rest of America and the world watched on TV, millions of Gulf region residents desperately tried to survive not only the weather, but the many human failures to follow. For 25-30 % of those people, the additional challenges of disability, poor planning and low expectations made the unimaginable crisis much, much more dangerous.
As the parent of two children with significant disabilities and as the legal guardian for an Iraqi child who was spinal cord injured in an accidental US artillery bombing two years ago, I am acutely aware every day of the unmet needs of 56 million Americans with disabilities and hundreds of millions of people with disabilities worldwide. I am also acutely aware of just how rare it is that the unmet needs of people with disabilities are ever considered by the people who have the most power and the best resources to maximize positive outcomes for a minority population that encompasses a sizable portion of the general population of the United States. According to the U.S. Census of 2000, people with disabilities represent 19.3 percent of the 257.2 million people ages 5 and older in the civilian non-institutionalized population. Another 2.2 million Americans are institutionalized in nursing homes and long-term care facilities. And, it is necessary to point out that these are all people with disabilities. People don’t go to nursing homes because they are old; they go to nursing homes when their community fails to meet their additional needs.
Some areas of our country have an especially high percentage of people with disabilities. As it happens, the areas most severely impacted by the hurricanes were also areas with especially high percentages of people with disabilities living in their communities.
According to the 2000 Census:
In Biloxi, Mississippi, 10,700 people (25% of the residents) are classified as people with disabilities.
In Mobile, Alabama, 43,000 people (24% of the residents) are people with disabilities.
In the New Orleans metropolitan area, 250,000 residents (21.3 %) described themselves as disabled.
Because people with disabilities are…
disproportionately below the poverty line,
often less mobile than the general population,
disproportionately more dependent on outside assistance, and
often misjudged as less capable
… this population felt the impact of Hurricane Katrina quite severely.
For most of my career, since the 1970’s, I have worked primarily for non-profit organizations. For most of this time, serving people with disabilities, we have struggled to meet complicated needs with extremely inadequate resources. As the executive director of a non profit organization for the last four years, I am sure I have often fallen short. Due to the magnitude of need, the shockingly limited resources made available to invest in the needs of people with disabilities and the never changing bigotry of low expectations regarding the value and contributions of Americans with disabilities, I anticipate that the needs of my constituency will remain under-met for the foreseeable future. And, as long as Congress fails to ensure the enforcement of laws to educate children with disabilities, fails to address the institutional bias in Medicaid, fails to pass Money Follows the Person, MiCASSA, the Christopher Reeve Act and the Family Opportunity Act, fails to fund adequate housing, mental health parity, access to quality health care, equipment and services and considers legislation that will limit the human and civil rights of one in five Americans, no real progress will be made in maximizing limited Medicaid, Medicare, private insurance and other resources. This is both wrong and it is foolish public policy.
There are many fine examples of nonprofits who have actively sought to meet needs by using limited resources that were intended to serve people who are in the greatest need even when the weather is fine. Some organizations, like mine have been very fortunate to have come to the attention of true heroes who quietly find a way to make a real difference. Thanks to a very generous donation from Robert and Ita Klein, who recently established the Brian Joseph McCloskey Hurricane Katrina Survivors with Disabilities Fund, my organization, the National Spinal Cord Injury Association, is able to replace wheelchairs, hospital beds, household goods, repair homes, and pay rent and mortgages for as many people with disabilities as our fund will stretch to serve. The Kleins’ company, Safeguard Properties, Inc. has been playing a significant role in disaster and housing related services, and they wanted to make a generous donation to meet an otherwise entirely unmet need. Their recognition of the unmet needs of hurricane survivors with disabilities is a shining exception to the fairly bleak picture. Yet another is the Disability Funders Network which raised over $100,000 that it is distributing to small non-profits in $5,000 grants to meet unserved needs. Many disability organizations have had to tap their own limited resources to meet the needs of constituents who have lost everything. When we were desperate to send replacement equipment like wheelchairs and hospital beds to people who had to have them to preserve their health and we couldn’t get the Red Cross or any of the other large relief organizations to provide funds for drivers, trucks and insurance, we were very fortunate to find an unlikely ally. The Muslim Public Affairs Council stepped in with funding to help Portlight Strategies to get trucks full of donated durable medical equipment and supplies on the road and into the hands of those who had lost theirs.
As wonderful as these stories are, with not more than a few exceptions, the needs of people with disabilities, and their stories have been almost entirely overlooked by the general public. Even house pets have fared far better! I would be remiss if I didn’t thank Joe Shapiro, a wonderful reporter with National Public Radio who was one of the very, very few to report about people with disabilities. And, another shining example of high quality non-profits would be the formerly all volunteer Disaster Medical Assistance Teams, a part of the crown jewel known as the National Disaster Medical Systems.
Most organizations like mine exist in the shadow of high profile non-profits like the American Red Cross. In the days after the hurricanes, the American Red Cross has received a reported $1.68 billion dollars in donations while Gulf coast residents with disabilities have hardly benefited because many were excluded from their shelters and relief assistance services.
Sadly, we have attempted to help the Red Cross and other disaster relief leaders to see that they have been in a key position to address this inequity since 2001, but instead, people with disabilities are still turned away from the Red Cross and other charity-run shelters.
As well as the disability community has come together to try to take care of “our own”, we have been excluded from the larger relief community, sometimes told that we would just be “in the way” and “make things worse”. We were told to leave the relief efforts to those who “know what they are doing”. At the same time, we received report after report about the Red Cross shelters turning people with disabilities away or separating them from caregivers and service animals, then sending them to nursing homes when they couldn’t maintain their independence.
We had many reports of people with disabilities arriving on busses from New Orleans and being forced to remain on the bus while everyone else was invited in. Then they were driven from shelter to shelter for sometimes hundreds of miles before being taken in.
When disability experts showed up at the shelters to offer their assistance, they were frequently turned away, and we’ve been told that this was because they hadn’t completed the “required training”. This was an interesting disconnect from another conversation I had.
When I inquired about the sheltering needs of people with disabilities, once I was finally able to reach a National Red Cross Operations official, she told me “we aren’t supposed to help those people, the local health departments do that. We can’t hardly deal with the “intact” people (this term is considered highly offensive to people with disabilities). Don’t you understand that we’re taking volunteers off the street to run these shelters?”
I am told that just last week, a Red Cross official told meeting attendees at an AARP meeting that the Red Cross does not serve people with disabilities. I would have dismissed that comment entirely as mere gossip if I hadn’t had a similar conversation.
There are many stories, but a few stand out as especially egregious.
One woman in Alabama, a college graduate who survived a spinal cord injury 10 years ago but was living independently until the hurricane struck told me she went to the Red Cross shelter as soon as it became clear that her home was about to flood, but she was turned away. She was directed to a “special needs shelter” but that shelter was so overcrowded with people who all needed additional help that she ended up sleeping in her wheelchair for days on end. This caused a serious skin condition to develop, landing her in a hospital and then a nursing home. Despite the $1.68 billion raised by Red Cross, she never received any assistance from them.
In one town, also in Alabama, after waiting all day in line for assistance, residents of the Red Cross shelter were told that the only way to register for assistance was to leave the Red Cross shelter and travel to another town. But there was no accessible transportation offered so those with mobility disabilities were unable to seek assistance.
Jason and his mom, displaced from New Orleans to Dallas, sent us the following email three weeks after the hurricane:
“To Whom It May concern:
Presently, Jason (SCI, 11 years post) and I are homeless and living in a Salvation Army Shelter due to Hurricane Katrina. We had to leave our home, and all of Jason's medical equipment (i.e. his hospital bed, electric wheelchair, hoyer lift, etc.) Since I am in a public place using one of the laptops that they have made available to us, I will not be able to write a long letter explaining all of our business. But I am writing now because we need some financial help.
Because we don't live in one of the shelter sites, we are out of the loop of things that are going on. We have not been able to secure clothes or any basic funding. FEMA is taking a long time to help and we are missing out on everything because we're not able to get around. Jason is using an old manual wheelchair and I have to push him everywhere. This has been a strain on me also.
If you can help us, please contact us. Any help we can get would be appreciated. We are desperate, so I'm grasping at any and all past contacts. Normally, I would never find myself in this sort of begging position. But this has been anything but normal. People's lives were totally shattered. Families were torn apart. Please help us.”
Jason ended up in the hospital for weeks as a result of the lack of medical equipment and supplies.
We worked around the clock for weeks to try to get disability experts into the shelters to assess the needs of people who couldn’t hear the announcements over loud speakers, or see the signage that directed them to assistance, people who were losing critical stability because they didn’t have access to medication to treat their mental illness, people whose eyes and kidneys and hearts were being attacked because they didn’t have insulin, people who didn’t understand what they needed to do to get food and water because of an intellectual disability and people who couldn’t stand in line for seven hours, or even seven minutes because they had lost their wheelchair during the evacuation. People housed in alternative settings were excluded from the myriad of relief programs at the shelters and unable to gain equal access to resources vital to survival and prevention of secondary complications.
People without their wheelchairs, walkers and canes couldn’t stand on line. In the heat, many people were unable to wait for hours to be assisted and so those with the direst needs often had the least assistance.
Some people, who need additional supports to maintain their independence, were forced to go to special needs shelters while family, other caregivers and even service animals were denied access to offer assistance. Once independence was compromised, people were institutionalized. I am told that many, many of these people have still not been located!
One man in east Texas told us about having to drive from a shelter to the local hospital for weeks, every time he had to go to the bathroom because the bathroom at the shelter was not wheelchair accessible.
In a recent report by the National Organization on Disability: “The most underserved group [in shelters] were those who were deaf or hard of hearing.”
Less than 30% of shelters had access to American Sign Language interpreters
80% did not have TTYs
60% did not have TVs with open caption capability
Only 56% had areas were oral announcements were posted. “This meant that people who are deaf or hard of hearing had no access to the vital flow of information.”
(Report on SNAKE Project, Oct. 2005)
There are no estimates of the numbers of people with disabilities who were turned away from the shelters, those who were sent to nursing homes and institutions and those who were able to evacuate to locations other than shelters, sometimes further isolating them from the vital services they needed to protect their independence and their health.
Recently, when I asked people how much financial assistance they received from the Red Cross, 70% told me they had not received any assistance and of those who had, most reported receiving $360. The highest amount received was reported by one man who received $680.
And while thousands remain homeless and in need of financial assistance to cover mortgage payments, rent, utilities and basic necessities, just recently, I learned that $66,000 in foreign donations have been given by FEMA to the United Methodist Committee on Relief (UMCOR) and the National Voluntary Organizations Active in Disaster (NVOAD).
The case management program, promises to “assist disaster survivors with unmet needs” but none of the $66M can be used to meet those unmet needs, rather the $66M will be used to hire paid staff who will hire volunteers to provide “case management” to 100,000 hurricane survivors. No efforts seem to have been made to reach out to disability service provider experts to participate in this project, and in fact, the website for the project and the instructions for responding to the RFP are not accessible, even though accessibility is required. Even the telephone is a problem for many as it is a New York number and there is no 800 or TTY line. I have to wonder if the $66M would have been better allocated to pay rent and child care so people can get back to work and get on with their lives instead of meeting with more volunteers. And, for people with disabilities, I wonder how skilled volunteers will be at navigating complicated systems that regularly confound experts. I have to wonder if this plan will decrease or increase unnecessary institutionalization!
Along with everyone else, I have learned over the past three and a half months that for all of the planning that has gone on, people with disabilities are not in good hands and without immediate and bold steps, their needs will remain entirely unmet just as soon as the next disaster strikes. I wish that generic systems were capable of holding the very specific and often complex needs of people with disabilities in the foreground as they make quick and sweeping decisions, but in a country that still thinks nursing home placement trumps community based care for people with disabilities on a sunny day, it is obvious that we can’t rely on generic decision makers to make smart decisions about the needs of people with disabilities in the midst of disaster.
We have learned that just as we can’t expect well-intentioned medical and public service personnel to adequately address the complex needs of people with disabilities in day-to-day situations, without a deep and thorough understanding of the tenets of independent living and self-determination or absolute clarity about the human and civil rights of people with disabilities, we also can’t expect these dedicated community members to understand the complexities of meeting the additional needs of people in the midst of disaster.
However, with some smart investments, not only can people with disabilities begin to trust that their needs will be better met in future disasters, taxpayers, generous donors and the general public can rest assured that we are maximizing limited resources and minimizing unnecessary waste.
In fact, amidst all of the projections of huge additional costs to meet the real needs of our citizenry in a disaster, there is clearly an opportunity for visionary policy makers to SAVE tax dollars while maximizing limited resources, now, who could possibly argue against that! Thanks to you Chairman Ramstad, the needs of people with disabilities, and the hope of visionary leadership hasn’t been lost. I know you will invite your colleagues to join you in prioritizing the needs of hurricane survivors with disabilities as next steps are taken.
Recommendations to the Red Cross
Issue additional guidance to shelters regarding their legal and ethical obligation to serve people with disabilities.
Establish an Office on Disability, and staff it with disability experts known to the disability community as strong leaders with a track record of meeting the additional needs of people with disabilities in a disaster. Give that Office direct access to the CEO of Red Cross, power and adequate funds, support staff and other resources.
The in-take forms used for people coming into shelters must be revised so that disability-specific information is collected.
Training and leadership is urgently needed to provide guidance to Red Cross employees and volunteers regarding their obligations to serve people with disabilities.
Actively pursue partnerships with disability related organizations.
Every shelter must have at least one volunteer on duty at all times who is knowledgeable about identifying individuals with disabilities when they arrive at the shelter, helping to identify that individual’s needs and then helping with or directing those individuals to appropriate assistance.
People with disabilities must be carefully tracked, and so must their equipment. When they leave a shelter, there must be information kept on file about where they were sent.
Nursing homes and institutions must be alternatives of last resort and never used for more than temporary shelter for previously independent people, and those receiving their supports and services in the community.
In the future, why not put all shelter services in the same building, rather than separating people with additional needs from their family and limiting natual supports tat may mean the difference between dependence and independence.
The American Red Cross needs to increase its capacity to use technology at all levels.
The very same housing crisis that has kept hundreds of thousands of people across the US in restrictive living environments is now putting previously independent and self-sufficient disaster survivors in hospitals and nursing homes for lack of appropriate housing that allows them to use a bathroom and sleep in a bed. We are still working to get to the tables where key decisions are being made about temporary and permanent housing. We have been trying to get to those tables with powerful housing non-profit organizations who have access to substantial funds for rebuilding. We are trying to talk about universal design, accessibility and visitability. We’ve been attempting this since it first became apparent that housing would be a critical need. Yet, even today, housing decisions are being made that will result in discrimination, further limited options and institutionalization of people who could and should be in our communities and in our workforce.
Additional Requests:
Please encourage the appropriate Committees in both the House and Senate to hold additional oversight hearings on topics within their jurisdiction. For example, Medicaid would be an important topic for an oversight hearing.
Many non-profit organizations that already operate without adequate resources have had to use their limited funds to address the needs of disaster survivors with disabilities as well as their usual constituency. Supplemental funds need to be given to these groups to support their continued viability to serve our communities now and in the future. These organizations, independent living centers, local chapters of national organizations, protection and advocacy systems, etc. are at the heart of the solution. We know this; let’s make sure we support what IS working.
PLEASE do not allow ANYONE to convince you to compromise the hard-won civil rights of people with disabilities. Our rights remain fragile even today, and these rights are easily overlooked or dismissed in a time of emergency. This is illegal but if that isn’t enough it’s also costly. Be good stewards of tax and donor dollars! Just say no to limiting or violating the civil rights of people with disabilities!
Hurricane survivors are afraid that the rest of us are getting “Katrina Fatigue”. I encourage you to join me in assuring our fellow citizens that while THEY are entitled to Katrina Fatigue, they can count on the rest of us to stay focused and keep things moving forward.
It is in Benilda’s memory and with deep appreciation towards those who have worked tirelessly over the past fifteen weeks in the Gulf States, in Washington, in cyberspace and around the country that I will close with the following Chinese proverb:
The best time to plant a tree was 20 years ago. The second best time is now.
Thank you for the opportunity to speak to you today.