By Greg George
CEO
Spinal Cord Resources Network

For years disabled people have been denied shelter during emergencies, have had their service animals away from the them, and split up families up and force them to be in separate shelters. Spinal Cord Resources Network has been trying to educate the EOC directors and let them know that the disabled have rights under the American’s for Disabilities Act (ADA) that makes it illegal to treat the disabled differently and split up their families. This isn’t just a general idea, but the law and breaking it means that people’s civil rights are being violated. Last June the Department of Justice put out a document describing what is expected from emergency shelters with regards to helpingthe disabled. After four hurricane conferences and eight monthly EOC meetings we found that no one was reading the DoJ document and all felt that the ADA didn’t apply to them during an emergency.

After meeting with Chip Wilson, Statewide Disability coordinator we came to the conclusion that the Governor’s office needed to send out a letter outlining what the state wants from all shelters, regardless of who is running them. The ADA demands that all shelters, even those run by The Red Cross must make reasonable modifications to their procedures so that the disabled can use their shelters. It is hoped that EOC managers across the state will take this letter to heart and start to include disabled people in emergency planning. Mr. Wilson has been a fantastic advocate for the disabled during an emergency and has experienced first hand what happens when shelters are not interested in working with the disabled. The letter from the Governor’s office clearly states that past problems with disability relations will not be tolerated and that we need to get things right before we have a lot of dead people because of stupidity.

We recommend that you read this letter and fax a copy to your local emergency planners for your city and county. Make sure they understand what is expected of them and find out what meetings are available for you to go to. The only way we are going to have equal rights to shelters is if we are right there to let them know what we need and that we expect all entities to follow state and federal law. Don’t be surprised if the managers in your county and city push back on this and state that they don’t have the money or manpower to follow this letter that is ridiculous. If you run into this it is vital that you get in touch with Chip Wilson and Craig Fugate and explain what you are running into. If we don’t push the issue then nothing will be done. Our local officials love spending our money, now is the time to let them know what is required of them in exchange for all that money.

 Link to state document.

By Greg George
CEO
Spinal Cord Resources Network

After the 9/11 attacks, it was obvious that buildings more then 1 story needed to have plans to get disabled people out to safety. Most buildings have no plan to get the disabled out in dangerous situations like fires where you are not supposed to use the elevators. Unless you can find some people to carry you down the stairs you will die in the next building fire. There are wheelchairs like the iBot that can navigate stairs without the need of anyone else but they are expensive and hard to get from the government or insurance carriers. Emergency chairs that are made to navigate down stairs are also available but most building owners don’t want to spend the $20k it costs to purchase one. If you are lucky and the fire department has a ladder that can reach you then you will probably be saved. But if you are above 15 floors or so, the ladders can not reach those heights and you are up the creek without a paddle. This is especially the case for high rise hotels that will routinely put disabled people in rooms over the 15th floor. I was in a hotel several weeks ago for a hurricane and emergency symposium for the disabled and they put me on a 21st story room. I called management and asked how I was supposed to get down from this room to safety during a fire or similar emergency. The manager informed me that the security people had a well documented plan and that they were “highly trained” to do this. I asked if one of those people could come to my room and describe how they were going to get me down to safety. The security manger was a typical “deer staring into headlights” when he was asked for the plan to get the disabled to safety. He first said he would use the elevator. When we reminded him that you shouldn’t use elevators during a fire he then said he would call the fire department and they would use their “highly trained” people to get me down. When I asked if the hotel ever discussed this problem with the fire department they said that it was never a problem so they never did it.

If you are disabled and above the 15th floor during a fire there is an excellent chance that you will die in that fire. There are no plans, no equipment or anyone that is will or able to get you down to the first floor. Evidently we are supposed to either crawl on our stomachs down the stairway or perhaps wheel ourselves off the balcony to fall from 21 stories up.

During the terrorist attacks on the World Trade Center, two men carried a woman who uses a wheelchair down 68 flights to safety moments before the tower collapsed. Other stories have shed light on hardships people with disabilities faced in the aftermath of the crisis, including difficulties they encountered in accessing various relief services. The tragic events of last September have brought into focus the importance of taking into account the needs of all persons, including those with disabilities, in preparing for, and responding to, disasters and emergencies. They have also served to renew interest in how building requirements address accessible egress.

The Access Board develops and maintains accessibility requirements for the built environment, transit vehicles, telecommunications equipment, and for electronic and information technology under several different laws, including the Americans with Disabilities Act (ADA). The Board’s guidelines for facilities address means of egress that are accessible to persons with disabilities. Presented here is an overview of these design requirements. Also included are links to information developed by other organizations on evacuation planning and disaster preparedness.

(See the begining letter to the Governor of Florida on our home page of http://www.spinalcordresources.com/?q=node/613)

——– Original Message ——–

Dear Disability Coordinator Wilson,

Thank you for reading the letter I wrote on my family’s behalf to meet with the Governor during his conference in May on Hurricane Preparedness Wednesday, May 11 - 16, 2008. My husband and I understand that the theme for this year is “Maintaining Vigil While Preparing for the Inevitable.” It is a great idea. But only if you don’t have a disability.

Mr. Wilson, we know you are well aware of our work to address this issue. We also know that you have contact with many people who know of our work. But are you also aware that this story is not just about “the Georges”? Are you aware of The Special Gathering whose community is of cognitive disabilities and has trouble getting to safe haven; or SPARC who works with the Autism community and can’t obtain safe haven for their community or the Baptist Church in Palm Beach who decided that they needed to build an addition onto their church to help their special need community; or the former HOA president who died from Wilma because of stress due to lack of medical care & a safe repaired home to live in; or even the quadriplegic who was sent to three different shelters only to be sent home without safe haven during a hurricane?

Greg and I could have gone and sued Broward County and everyone else involved for refusing us shelter during Ernesto. But we didn’t. Not only did we not do that (like others we both know who prefer that line of thinking), but we went a step further to become involved and be a part of the change by talking to and educating others as well as ourselves as to the process, steps, equipment and other issues that are involved in such an undertaking. We are unusual in that we have accomplished and compiled a knowledge base that we can proudly say no one else can match in all of only two years.

In high school and college we we were taught American Government and about the due process of law. Why is it that when we have contacted, written, called, emailed and tried to repeatedly call out for help and attention to this important and concerning issue - we have been met with silence. This is embarrassing. We are Floridians. We are in the “hurricane state.” We are supposed to keep constant vigil. Personally we learned that when we moved from Michigan only two months before Andrew hit. How are we or others with disabilities supposed to prepare when there is no place to go? When there is “no money for legislation”? When there is no cause for alarm - only a “well we’re not perfect” stated repeatedly over and over again?

To ask for a meeting with the Governor (and yourself hopefully!) should not be considered an inconvenience. It should be considered good fortune and an honor that three constituents (okay so she’s 19 months…but involved none-the-less the entire time of this project - and before) would work so hard using the democratic system to try and gain recognition to a simple idea. The idea that all life, all disabled Floridians deserve equal access to shelter is not worthless but valuable and a worthwhile cause.

Mr. Wilson, I am hoping that even the silence we have endured from you (no emails, no returned phone call) will end here. We clearly understand that the Governor felt you were the best person to represent the disability community in the State of Florida. Please allow us to see what the Governor saw in you, and help us as well as the disability community in Florida who does not have equal access to disaster shelters have the ability to “Maintain Vigil While Preparing for the Inevitable”.

With all due respect,

Laura George
Vice President
Spinal Cord Resources Network, Inc.
“Educate and Advocate”
===========================
“To fight for your beliefs; you must believe in your fights.”

*Note: This letter will be posted to our website: http://www.spinalcordresources.com/hurricanecenter

For those of us in the disability community who actually like to plan ahead, we are finding that the sheltering system should we need to use it is still not any better accessible then last year. The information on the websites is not any clearer, the call-in centers still do not have any updated information, and the publicity in gaining the disability community at-large’s participation and help has not even occurred. In our travels and research over the past year, the stories we have heard and accumulated are mounting. Yet, for the powers that have the ability to take notice of this issue they continue to ignore the seriousness of the issue. Below are some of the items we have learned to date…

• The number one reason we have heard for the disability community to not take refuge in a governmental community provided shelter is: I am afraid that they are not going to be able to handle my medical condition properly and I will come out sicker/in more pain/with more injuries then I already have. Since the risk is equal to that of what I would incur at home - I’ll take my chances.
• The number two reason we hear most often is: They don’t want to help us disabled folk. If they did there would be more information directed to us.
• Number three: I’m leaving the state.

Of course there are other items we have heard…

• Evangelical mental health community on the east side of the state: One of their family had a coach who told them to hide a bathroom for a hurricane with food and a can opener. They took 3 cans of food and an electric can opener.
• Southern Florida: gentlemen was turned away from special needs, the hospital and the rehab center he was sent to. He’s a quad and spent the hurricane alone.
• Northwestern Florida: Autism group took shelter in a special needs shelter and was kicked out. They tried to raise funds for their own shelter and gain further funds from the state. The funds were given instead to a boardwalk project.
• South Florida: Gentleman has to raise internal body temperature to unacceptable levels to gain access to shelter in hospital to accommodate his medical needs.

The responses we have heard that counter the above are..

• There is not enough money in the budget to put laws through in place to address this issue.
• Since the budget there is no ability to purchase additional supplies or obtain additional help.
• But “so-and-so” organization hands out information already to the community. They may also attend meetings on this.
• Lack of accessibility isn’t true…any hospital will take you. No they won’t. (Not the editor’s response here.)
• Shelters (shelters/hospitals/etc.) will never ever be able to fully meet the needs of the disability community. Sorry.
• There are all kinds of police, fire, ems, and volunteers to help out. But there isn’t enough help to upgrade and better meet the needs of the community.

Here are our thoughts…

• The lack of communication between the government and the disability community in terms of disaster preparedness is appalling. Huge leaps and bounds in terms of comfort and ability to dispel the us “vs” them mentality could be cured by taking some time to clarify and elaborate on the secretive points to the disabled accessing shelter.
• Invite the disability community’s participation. They would love to help if given the chance. Since it is overwhelmingly felt that there opinions are of no concern it easy the the disabled to form a negative opinion.
• Invite the college level medical students who need clinical hours to aid during a disaster. Real world experience is often better and more welcomed then sitting in a classroom. Since they are young and eager they tend to be more upbeat in a concerning situation as well. This can also help ease a medically needy population as well.
• Regardless of which organization you think will help shelter you…unless you have it on paper…it’s probably not guaranteed shelter.
• Wherever you take shelter, who is your caregiver and who is helping them?

While Hurricane Season may not officially be thought of until May, here are a list of questions we urge you to ask yourself:

• How long will it take me to set up for shelter? (Include registration and confirmation if the type of shelter you are seeking requires this?)
• How long will it take me to pack for shelter that is outside of my home? (Include travel arrangements.)
• How I can make sure I have enough medication to cover myself for the expected time of the storm?
• How will I get help after the storm? What happens if they can’t gain access to my home?
• Do I have a back-up plan in case any/all of my plans fail?
• Have I stocked up on extra medical supplies (other then medication) that I use on a daily basis?
• Do I need any extra parts to be able to repair medical equipment I use?

The team at Spinal Cord Resources Network and its partners currently are attending meetings and trying to effect change where it is not wanted. In addition community meetings, we will be at informational fairs and conferences in the upcoming weeks. We would like to hear from you regardless of what side of the story you are on. Even if you are outside of the United States. All thoughts are welcome.

Please stay tuned to us for more updates and important issues that address this hidden problem that many are eager to deny of its existence.

In case you did not see our appearance on WSVN (7) January 15 and 16, 2008, please check out the link at WSVN (7) Carmel on the Case: Hurricane Handicapped; Producer Kelli Garlock.

The intro to the introduction paragraph text of the news story says it all – no place to go for shelter during a storm. The hospitals would not take Greg, the shelters (including special needs) would not take Greg, and Red Cross would not have taken Greg. Since that moment in time the officers of this company still stand in those shoes. What we have further learned, is that equal accessibility to the disaster shelters is pretty much non-existent for those who have severe and/or limiting disabilities like those with spinal cord injuries. As this is the United States of America where everyone is supposed to be considered equally, it is amazing how backward in time the treatment and perception of those with disabilities still exists.

Notice that the Director, Ms. Wilson states that asking someone with a disability to move is not a “normal” thing to do. Hmm. We wonder what is normally asked of the disabled when county representatives come out to a home on the pretenses of being interested in a problem with a county shelter. Since it is not something that is “normally” done, then why has there been no apology to the disabled community? Furthermore, shouldn’t there be an open hand extended to the disability community to let them know how welcome they are to the the disaster shelters?

It is nice to know that my husband “can get assistance at a special needs shelter,” but why is he the only one and what is the definition of that. The correct statement should be all persons who come to the disaster shelters that have a disability, will be accommodated. This is what Chapter 7, Emergency Management under Title II (Issued 7/26/07) of the ADA says with respects to shelters accommodating the disabled, and can be reviewed on their website.

Ms. Wilson makes one additional statement with reference to “reduced restrictions” by stating that, “People who do not have to be accompanied by a caregiver, are incontinent.” Let us dissect this comment. First, there should not be restrictions to access a disaster shelter for any reason. (See my above paragraph about the ADA.) For the latter part of the first sentence… those of you who have read, “Eats, Shoots & Leaves”, by Lynne Truss will understand why many who know the situation and myself (included) are shaking our head at her quote. What is she trying to say? Could it be:

• People who do not have to be accompanied by a caregiver, are incontinent.
  • If you come by yourself to the shelter you are probably a person who is incontinent.

• People who do not have to be accompanied by a caregiver, are incontinent.
  • If you do not need a caregiver, it is certainly okay to be a person with incontinence issues.

• People who do not have to be accompanied by a caregiver, are incontinent.
  • If you are accompanied by a caregiver, then you do not have a disability and can use the bathroom normally.

That very clearly defined statement is then followed up by this comment that the “rules do not require a caregiver to help one in and out of a wheelchair. But Miami-Dade will have medical staff to help out.” What will Broward County have? I presume that maybe they will have lots of caregivers staying in the shelters accompanying those who can come use the bathroom normally.

Spinal Cord Resource Network Officers in the News

>>>>UPDATE (1/16/07) - AIR DATE: Tues. Jan. 15 at 10P and Wed. Jan. 16 @6P)<<< Greg George (CEO and spinal cord patient) and Laura George (Vice President) of Spinal Cord Resources Network have been interviewed by Kelli Garlock of WSVN (Miami) to discuss the hurricane preparedness problems in Florida. While we have been working with House of Representatives and Senators trying to fix this problem, things have been moving very slow and there does not seem to be any hurry to fix the lack of equal accomodation in the disaster shelters for the disabled. We are hoping that by bringing in the media we will get better response from from all parties who are involved in making sure that disaster shelters are accessible for everyone in the disability community including the spinal cord injured. So keep your eyes tuned (or set up your Tivo) for January 15th and 16th at 10PM!

We will ask the station if we can get a copy and broadcast it from the site as a podcast for those that are too far away to get WSVN. In the meantime check the story “Hurricane Handicapped” on their site.

The Politics of the Disabled Obtaining Access to a Disaster Shelter - Update from The Mouse

Okay…Getting to the guts of reminding everyone why this is so important to us and it should be important to you too! Back in August of 2006 when the Spinal Cord Resources Network, Inc. President was 6 months into recovery for his injury and I was 9 months pregnant, Hurricane Ernesto was coming towards us and like most good Floridians we tried to prepare and take safety. But as we were horrified to learn, there was no place for us to go! More specifically, those who are pregnant can go to the hospitals, but those who are new to disabilities such as Spinal Cord Injuries or those with severe paralysis (that prevents them from being able to live without help) currently have no place to take haven when a disaster strikes. Since that time I have contacted and worked with the National Spinal Cord Injury Association (God Bless them!), Marc Dubin, Director of Advocacy for the Center for Independent Living of South Florida and Former Senior Trial Attorney for the U.S. Department of Justice Civil Rights Division/Disability Rights Section (1992 - 2005), Representative Martin Kiar’s Office (Florida) and an additional list of others (unfortunately not enough room here to list them all…) who have helped us to raise awareness to this issue and try to bring about change for all would be affected by the lack of access to a disaster shelter.

Yes, we were denied access by the Red Cross, the hospitals and the special needs shelters. If we tried to simply show up to a shelter, the risk was too high for us of either losing our insurance; losing our child; and simply being caught driving in the storm. Fortunately Ernesto was a non-event. But what if it wasn’t? What we have learned and gone through, it is our hope that at Spinal Cord Resources Network, Inc. will cause you to take a step back; question and discuss what you could/would do differently. Currently, there is a 4 week waiting period to be approved for a special needs shelter and that is assuming that you meet the criteria of being accepted and allowed to seek haven. Why don’t we leave town? Because if one needs pain medication, and needs to make sure that they have enough to last them through the storm, they have to wait (according to Florida law) until a Hurricane Warning has been issued before the 30 day time frame is waived and prescriptions can be filled. Another reason is that even if one goes on the road and decides that they do not need medication but still need shelter AND they get caught in traffic their application for a shelter is only good for the county that one lives in. There are many other issues that should be taken into consideration as well such that lack of nursing care that will come out to one’s home before/during or after a storm; most people in most shelters do not know how to work with para/quadriplegics and are not aware that service dogs (by law!) are allowed to accompany them. If there an electric wheelchair is being used, an extra charged battery must be brought as currently they cannot be recharged in the shelters. Another item to keep in mind is the use of a home health agency and their hurricane plans for themselves as well as you patient. Make sure you find out what preparations your agency has or has not made. Let’s not forget our home associations either - they may not want you to destroy the beauty of their neighborhood by installing a portable generator to maintain a comfortable temperature when you cannot sweat. The list of concerns goes on.

We did meet some representatives from the county we live in, presented our concerns and were met with a less then compassionate or even logical response. We in turn chose to take an unorthodox approach to resolving this issue. With assistance from the Centers for Independent Living we have been connected up with the County Emergency Task Force which is now has a Service Modification and ADA Compliance Subcommittee to the Special Needs Task Force for the county in which we live. We are also actively working with our local politicians to see if the current laws can be enhanced or changed to better accommodate those who have para/quadriplegia of some form who might truly need access to a disaster shelter. That not withstanding, you no doubt have noted that we will be appearing on a local news station soon to educate others in the community and raise further awareness to this serious issue.

If you feel that this issue is of concern to you, we ask that you become involved. Speak up to your local politicians and disaster shelter representatives. Find out how they will or will not accommodate you in an emergency. Now is the time to begin preparations especially if you are a person who is new to the disability community; don’t wait until the storm is upon us and you are without the extra comforts you need to live. For us, it is two years later and we still do not have a safe place to go in case of a disaster!

PS. It would be truly helpful if others, from other disability communities could become involved as it is very important for you to speak for those who cannot easily speak for themselves. Please feel free to contact us for more information.