Disclaimer:  The following is the un-edited raw output of the real-time CART taken during ILRU’s Webcast/Teletraining . Although the CART output is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors. It is posted as an aid to understanding the proceedings at the session, but should not be treated as an authoritative record.

ILRU September 14, 2005 

>> Sharon Finney:  Welcome to today's webcast and teleconference, Disaster Relief Strategies for Individuals with Disabilities presented by Lex Frieden with the National Council on Disability and Mark jopson at the shepard center.
My name is Sharon Finney, I'm with IL Net, one of your sponsors for today's event I'll be moderating the webcast and presenting your questions to the presenters, as well as Richard Petty.
 I want to remind you about sending questions, for those of you on the teleconference.  Chad, will give you instructions.
To submit a question, you'll need to click the submit a question button at the bottom of your video player screen.
Or you can simply email it to webcast at ILRU .ORG.
Please send your questions now or at any point during today's presentation.
Those questions will be posed to the presenter.
Now, I'd like to introduce our operator Chad, who'll give those of you on the teleconference instructions for cueing your questions.
Chad?

>> At the conclusion of the presentation if you would like like to ask a question, please press the star key followed by the one key on your touch tone phone at that tomb.
Questions will be taken in the order they're received.
If you want to remove yourself from the questioning queue star two, to ask a question it's star one,  to cancel question, it's star two.  

>> Sharon Finney.
You can call us at 7135200232 if you have any problems.
We'll be talking about disaster relief strategies.
 I I'm pleased to introduce Richard petty, program Director for ILR Net.  

>> Good afternoon, everyone, welcome to our webcast.
Today we're going to discuss strategies for getting assistance during rekroif from hurricane Katrina.
Our presenter is Lex Frieden head of ILRU and Council of Disabilities.
Lex has personal experience with disaster.
In 19  excuse me, in 2001 he was a victim of the flood in Houston when tropical storm Alison flooded much of Houston.
And from that experience, Lex learned a great deal that will be helpful to anyone who is going through the difficulties caused by hurricane Katrina.
He also has been active nationally. As far as work with hurricane Katrina, so Lex Dr. Barbara Haskins a variety of perspectives that will be useful as we talk today.
Also with us is Mark Shepard  excuse me, Mark Johnson who is advocacy director at the Shepard center in Atlanta.
Mark is a long time member of ADAPT and a national advocacy leader in the Disability Community.
And Mark will be adding comments as we talk today.
Lex, if you'd begin with your personal perspective, please.  

>> Thanks, Richard I'll try to be brief, I know there's a lot of questions there that people have trying to deal with people who have evacuated with and in the process of evacuating from this disaster.
 I think it's important to note that for people with disabilities, the disaster has not ended.
The press sometimes would have you believe that we're through the evacuation stages, even some of the emergency personnel would have you blooe that we've completed the evacuation and the rescue.
But, in fact, many people with disabilities are still in need of certain type of rescue and they will be, for some time to come.
In my own experience, 2001 topical storm Alison, the water came in and it just kept coming.
It eventually engulfed all of my wheelchairs and I was actually in one of them.
In that storm 20 people actually lost their lives.
In this storm, perhaps as many as two to four thousand will be documented as having lost their lives.
So the porportionate comparison is substantial.
I want you to know that.
But, nonetheless, my level of anxiety, frustration, fear and need was extraordinary high given the fact that my support mechanisms were broken down.
I wasn't ail to stay in my home due to the mold immediately from the flooding and a number of other circumstances.
 I can identify very well with many of the people that have been affected by this flood that have disabilities, in fact yesterday spent most of the day in one of the larger shelters in downtown Houston.
Visiting with people with disabilities who are cure ray just now in their desire to get back to some level of normalcy in their lives, to regrain some bit of dignity and independence in the process.
It'll be a long arduous process.
What I'd like to talk about today is some of the things we can do to help these folks.
 I would like for Richard and Mark to help me with that.
And if we can, just sort of pick off some of the issues we're aware of and try to get some of your questions in as well.
Before I turn it over to Richard there,  is one thing from a global perspective I'd like to say, and that is, within the systems that are available, there are some very capable, caring people.
Working for FEMA, probably for American Red Cross and other organizations.
These people are few and far between.
Most people are working this disaster are not trained at this stage and most of them do not understand and can't appreciate or identify with nor solve the problems of people with disabilities.
And we believe there are approximately two hundred thousand people with disabilities who have been affected by this disaster.
 I can tell you, a good portion of them are in Houston now, and I feel like those are the fortunate ones, because we have a great infrastructure and those people are generally getting good service now despite some of the snafu in the first three days.
In many places across the region, people with disabilities are isolated, they're isolated within large shelters.
Some of them are isolated having been evacuated to places where there are no helpers, there are no information resources.
There are no transportation and so on.
Richard, let's get to some of the issues 

>> Richard: Let's begin by asking both Lex and Mark.  If you're someone who's experienced the disaster, or if you're a center for independent living helping someone, who's the first step you need to take?

>> In my opinion, people that experience the disaster need to get registered with FEMA.
Regardless of how it goes today, eventually in the next two to three, four weeks, they will be able to access a system, they'll be able to get considerable assistance if they can define clearly their needs.
FEMA is working and their policy efforts going on in Washington, even in Congress to help insure a transition for people with disabilities.
But it won't be a smooth transition.
The first thing to do though is to get on the FEMA list.
It's very, very important.
It's critical.
And the second thing to do is to call an independent living center or to find another agency where someone can function as a kind of advocate or case manager to help make phone calls on your behalf.
Because, very likely, will not have the ability, energy, the numbers to call or the opportunity to make many calls that need to be made on your behalf.
So some other organization, some advocate is going to have to help people with disabilities.
And that of course, Richard, leads to the role of the centers for independent living.
We as independent living advocates and service personnel are going to address, during the this week and the weeks and months to follow, issues that we have never been confronted with before.
Unique issues from people who have very special circumstances and who have suffered immensely.
We have to deal with them as we would any unique circumstance and that is one at a time, try to identify clearly what the issues are and begin to work through them.
Fortunately, some of the issues that people will bring to us are those we are well familiar with.
Most of those issues will involve housing, durable medical equipment needs and attendant service needs.
We know about those problems.
And we certainly need to continue pushing for more resources.
To the extent that we have them available, obviously, we're going to refer people to them and get them in to appropriate accommodations with appropriate service needs met.
But, it will be a struggle because the resources are so limited in the region, at this point in time, I think many people will eventually find themselves located in the other parts of the country.
Go ahead, Richard.  

>> A Richard: A lot of people have called the toll free numbers for FEMA or registered on the web site.
They have an eight digit number from FEMA.
But at this point, what do they do with that number?

>> Lex: Well, at this point they just hold on to number.
The number is their ticket.
Eventually the benefits will be associated with that number.
FEMA, for example, has funds available to help people with temporary assistance.
They can pay for apartments, motels, and other kinds of temporary housing.
They can also provide portable housing in the form of trailers.
Kind of which are accessible at this point, to my knowledge.
But many of which will eventually be provide FEMA follows through with recommendations that have been made to them.
Richard, the number is the ticket.
When they have the opportunity to actually exercise the ticket depends on when they can actually get face to face to a knowledgeble FEMA caseworker or talk to one on the telephone.
This for the next few days is going to be very, very challenging.  

>> Mark: I'd like to echo some of Lex's comments.
 I think it's important for folks working evacuee s is to document their experiences here.
 I know some of the folks I've been working with, they'll pull out their wallet or purse and they'll have multiple cards with multiple pieces of paper with multiple names and phone numbers.
Something as simple as an address book or journal to put this all in one place.
There's a lot of names and a lot of acronyms and letters and phone numbers coming at people.
So, not only.

>> Richard: Not only calling the FEMA number important but also getting to a FEMA center in their area is also important.
Is that right?

>> Lex: I think it's critically important for them to get to a center provided they can find an expert.
Each one of those centers should eventually include someone that's an expert on disability related issues and special needs.
Some of the smaller resource center may not have that person on board yet.
Eventually, FEMA should have, if everything goes to plan and theory, at least one expert in at east each one of the resource center.
Those folks can be invaluable for hook folks up for what they need.
 I wouldn't stand in an immense line hoping to find that person unless I had someone to go with me to carry a lot of ice and water.
It is really like the bread lines of the 1930s, at this point in time, the best thing to do is to stay in the airconditioning, if you've got that and just keep calling until you can get through.
Hopefully, then be refered to an expert on the telephone that's not even a promise or assure answer at this point time.
Because, again, they are trying to deal with immense numbers of people who are in the same situation.
Although, I don't think they're appropriately making provisions to move those folks with extraordinary needs to the top of the list 

>> Mark: I think give an example of how Lex is able to kind of work with some of the independent living folks and infrastructure out thereto really make things more user friendly.
 I reached out to some folks in nursing homes, one of them got transported yesterday to Houston, the independent living center was at the airport, they took them to the center Lex and them had been working the most with.
He was able to do his applications, he's back again today doing some more stuff.
So there's a role for the independent living centers and human rights group to play and some of that is to help streamline this and help make it more friendly, to help reduce the stress 

>> Lex, what if someone has lost durable medical equipment, wheelchair.
Is FEMA the resource or is there another resource they should tap in to?

>> Lex: Really, Richard, this is a practical matter.
People should get those things replaced or at least find temporary replacement for those things by catch or catch can.
Wherever they can.
If there's a voluntary organization, a church member.
A red cross worker.
An independent living center who ever can respond to their need for use of some kind of temporary mobility, wheelchair, whatever.
Other DME that they need.
They just need to get it from wherever they can get frit, for the time being.
In some cases, I must say, in my own case, during the flood in 2001, the independent living center got me a wheelchair within 72 hours during the time before that, I mean I was either in my bed, fortunately I could stay there long enough to get out of there.
And we got out three days later when I finally got a wheelchair.
The next time, that temporary wheelchair finally got replaced by the assistance of vocational rehabilitation agency.
 I did not happen to be a client at the time, but I was able to go through the process and get registered through the extraordinary circumstances of that disaster.
And many people may find themselves in the same situation.  There's no right answer to finding those things you need now.
Just get 'em wherever you can, as soon as you can.
Then deal with  if it's something you have to pay for and you have the means to pay for it, do as Mark suggested, keep your receipts and keep your lists.
Eventually that may well be reimbursed by FEMA.
Again, this is a problem for many people who didn't have cash on hand and may not now because they're not employed.
And other situations, you know, you're going to have  some people will have to depend ton goodwill of others to survive this, frankly.  
>> Do either of you know, this is a question from the web.
Are 211 services, the 211 is number in local areas are they being updated with resources for people with disabilities?
Do they have any knowledge that's useful there 

>> Lex: In the larger communities they are being, to my knowledge.
In Houston 211 has been very helpful in identifies housing and other resources including transportation.
 I would suspect those 211 systems are not even up in many of the smaller communities where people are 

>> Mark: It's the same experience here in Atlanta.

>> We have access to some people in FEMA's office of the civil rights.
We have taken it to those levels.
There are a number of partnerships happening right now, but I think Lex, you know, really nailed the head  whatever he said, how ever you say that.
Hit the nail on the head 

>> Sharon Finney: Could I make one more quick comment 
 just one more thing.
We're learning a lot from this.
And that whose lesson of some people have gone and gotten trained as Red Cross volunteers.
Some people have worked with their state on accessing nursing home.
Infrastructure that you may or may not have had a relationship with already, now they can help you gain access.
There's some of that mainstream stuff that we just didn't have relationship with.  

>> Richard: Let's take one more comment from – 

>> The comment I'd like to make is really to the Disability Community as a whole in this country.
The response and the generosity from our community has been absolutely tremendous here in the state of Mississippi.
And we're so greatful and so thankful for the many donations of medical equipment.
Durable medical supplies.
Cash, household items, etc., that we have received here at our center.
And I guess, for anybody out there listening and can hear me and has made a donation or sent supply douns here to us, we're incredibly gradeful for that.  
>> Richard: We're incredibly greatful for those in the centers to be front line.
We know you're takeing the brunt of this and we all thank you for what we're doing.
Sharon, Finney, question from the web?
Could you give us just a couple of those, please 

>> This comes from Tira, Texas.
How do we get people registered for American Red Cross services when they're not in an urban area.
In the rural areas, it seem it is American Red Cross does not have chapters in all of the counties and so they're not registering with people.
FEMA renl strags is complete 

>> Lex: I understand, the question, Sharon.  If they don't have chapters, if they're not on the ground in those communities then registering is going to be irrelevant.
The most important registration is with FEMA.
Red Cross is only going to be of assistance if they have people on the ground in that community.
So if you're in a rural area, where there are no retsdz workers, American Red Cross shelter or American Red Cross service centers set up.
It's meaningless to register in larger communities, again, it's a very frustrating process because they don't have the line or the people available to answer the lines to take all the registrations that are out there.
And, American Red Cross chapters are dealing with that differently.
Some of them  in my experience with the flood in 2001 and again, bear in mind, this was a little flood compared to what's happened here in the south.
In that flood it took American Red Cross two weeks, literally twoweeks to get a team to my home.
Now, if this disaster is a hundred times larger than the one I suffered, how many might it take, I have no idea.
So, I wouldn't hold my breath waiting on American Red Cross, if they happen to be there, use them, get them, they'll do the best they can.
But they are overmatched on this one 

>> Richard: Let's take another web question and then go back to the telephone 

>> Sharon: This come from Mississippi and question is, should centers for independent living be made a point of contact for FEMA, American Red Cross, emergency services and what can do we to insure that it's the case in the future?

>> Lex: We talked to Kristy about that a little bit.
Among other agencies, independent living centers should be made a point of contact.
 I don't think they can be the only point of contact, because frankly, we cannot staff centers at a level that's necessary to meet the demand of disasters like this one.
But, we should have full access and we should be a known quantity to those first line agencies that received first calls.
We should be one of the early referrals and we should do everything we can to meet the needs.
The center in the gulf cost are doing that now.
And most of them have been identified by their local agencies at this stage now, twoweek in to this thing as points of contact.
But, some of them need to continue to make their services  make agencies aware of their services, that's something you can do on the telephone, by letter, fax or email.
That's another way to reach the shelters, by the way.
Some of the shelters are available, even if you can't get in to them by other means.
And, simply making them aware by those means that your services are available at a certain phone number I've even herd of a center that took sign down to the shelter and put the signs up inside with their phone numbers on it, because they didn't have the staff to be at all the centers, but at least they got the numbers out there for folks that wanted to call them.
The point of contact is surely an issue, it will be in the future.
It will not die with this particular disaster and hopefully we'll be on the front lines in time.  

>> I understand, finally, in Louisiana that center staff were allowed in to shelters in Louisiana and I know that has been quite a battle for them there as it has been in other areas.
But I know that finally there, they are in the shelters now.
Chad, if we could take some question from the telephone 

>> Chad: We currently have no question in the cue.
It's the star key followed by the one key 

>> Sharon, do we have more web questions?

>> Yes.
This also refers to FEMA I've heard that people with disabilities need to notify FEMA that they have a disabilities  that's because they would be eligible for additional assistance for services?

>> Lex: By the way, I don't work for FEMA but I can share my knowledge after having experienced them and reading all their rulesment FEMA does have the ability to provide assistance for people with special needs and people with disabilities beyond that that they might provide to people with out those special needs.
FEMA services are generally based on particular needs.
And if everything is working, the way it's theoretically should work, each one of the benefit packages that people receives are going to be customized according to the particular needs of that individual.
So, yes, it's definitely important to indicate when you register, or at least on a future  that do you have extraordinary or unique needs that are a function of a disability 

>> Lex, this is Richard, let me interject a question.
Let's say a person has been able to make it to a local FEMA center and they're sitting across the table from someone who's providing them some assistance and is in the procession of registering them and determining what supports FEMA can provide, and that person isn't aware of what you just described and how FEMA could make some adjustments or provide additional assistance that are related disability.
What should that person do when they get stuck in that situation?

>> Lex: Let me explain what generally happens when a person gets to those resource centers.
People stand in one long line or several long lines getting to the "first desk" and that's, you know, what we would call an intake queue.
And the people working on the manytake queue are generally not the most knowledgeable FEMA representatives.
They're basically referring folks from that queue to other queues.
So once you get to the front of that line and you're going to express housing needs and needs for equipment replacement and maybe you have other circumstances.
Personal property that you lost and so on.
They will then put you in the next line and they'll tell you go to this desk over here and that's the desk where they're processing housing assistance.
When you get to that desk, the person at that desk is going to be more knowledgeable about that they can provide in terms of housing than the person at the intake desk or more knowledgeable than anyone you talk on the telephone.
When they send you to the desk of individual and family grant which are given by states with FEMA support to help family replace what they've lost, the person there is probably going to work with the state health department and knowledgeble about their grants.  There may be table there from the rehabilitation agencies and others where you're directed to in the course of that visit.
If you, at some point, discover that the people don't seem to be responding to the particular needs of your particular needs that result in the disability, ask to speak to the supervisor.
Ordinarily, the supervisor in resource centers will be the most knowledgeable informed person in the whole deal and they should be the ones that would be able to assure that you get the unique and special services that you need.  

>> Richard: What if someone encounters a supervisor that doesn't appear to know.
Is there another level that someone can ask that supervisor to contact  is there another way to get to this.  

>> Lex: I encountered that circumstance at one of the resource center in Houston in 2001, frankly, I just started crying.
At some point, you lose it.
The people have that have been affected by the disaster are living 
on the edge daily because they have disabilities.
And now they're even close tore the edge.
Frankly, that's what happened to me.
 I lost it.
And fortunately, the supervisor that was there had enough empathy for nae she gave me a card and said, I'm sorry, I really don't know everything, I wish I did, here is my card, you call me tomorrow at this number and this is my private line, I will be able to refer you to some expert who can help you.
That's exactly what happened, from then on it was like being on a sled downhill.
But until you get in to the expert cue, so to speak.
It's going to be somewhat frustrating 

>> So the short answer is keep pushing?

>> Lex: Yeah, pushing to the extent that you can.
It's good to have an advocate working on your behalf as well.
Because people, under these circumstances, I think are not psychologically prepared to be as aggressive as they might be under other circumstances.
At some point, you kind of have a feeling of helplessness that over comes you.
But, make people aware of your needs.
That's the main thing.
If you don't let people know exactly of your needs.
This is very important, be very clear about your needs.
You must be very clear.
Many people go in and just generally complain and say, you know, my life is upset.
Well, that's pretty evident.
Be very clear about specifically what you need to help begin to get your life back to order.  

>> Mark: That's the first thing I said, you know, if you can write it down.
If an independent living center can type it up for you, you can Xerox.
Just have it in front of you so you don't have to rethink it every time 

>> Sharon, do we have other questions?

>> Yes, we have lots of other questions, this question comes from Maryland.
Where is the greatest financial need for a local center for independent living at this time.
In other words, where should one recommend a donation or services or support be forwarded to?

>> All right, this is Richard.
 I can help with that.
ILRU has a web board, a discussion board where centers are posting their needs and those people who have supplies and other materials and resources that they can donate are posting what they have.
We encourage  we encourage you to go to that board and look at what centers need and there are, there are some very specific requests from centers both in terms of funding and in terms of their needs for durable medical equipment.
Their needs for clothing, their other needs.
And you can get good information whabt's needed there and we encourage you to do that.
There are also, of course, we know that the centers in New Orleans and in Buloxi and other centers right on the coast have either been destroyed or certainly out of their buildings.
They have posted some of their needs on that board, so, we suggest that you first look there.
Lex or Mark, do you have any other suggestions?

>> Mark: Obviously, the national council on independent live canning set up a fund.
We have a process to kind of help reinforce what you all are already doing and also look at the longer term 

>> That is  this is Richard.
That is a fund for centers that are going to be going through reconstruction, is that right?

>> Mark: Right.
 I think, what Lex said is an important thing.
You're trying to meet that interim or short term need.
One of the things know that the center infrastructure is fragile before this or may not have had all the skills and capacity needed.
It is important to try to hold as many of the mainstream relief efforts as accountable as possible.
When you can, once again, document it.
There's an incredible number of partnerships available.
Ran in to retired delta airline pilot in the hall of a nursing home.
Tell me people who need miles.
But until we get out there and get in the mix of things and establish some relationships and rapport, the partnerships don't happen.
It's real important at this time for centers and disability rights groups to be in the mix.  

>> Chad, do we have question in the toll phone queue?

>> From Mike Collins.  

>> Mike:  Good morning Lex, Richard, how are you guys.
We're very concerned about the situation down there as we have been for a couple weeks now.
And have been trying to help out any way we can. Unfortunately, our initial equipment drive was not able to beat all the other drives that took place.
 I hope when this is all over we hope to remember to donate any excess equipment that anybody has to those international wheelchair charities that did really put about tlae thousand chair in to that pipeline.
One of the questions I have, is if anyone is reminding people from the centers, from the shelter region, and also from those down there in the disaster area to really take good written notes about the problems they encountered with emergency workers, shelter operators particularly in light of all the ongoing problems we've had in our disaster with the Red Cross shelters.
And, really give us an opportunity after this to shake it all out and put together a real comprehensive  another NCD report or some other consolidated report to the president and to Congress that will finally put an end to this, because we are very concerned that if that had happen in the Los Angeles to the extent that people had to be evacuated, we would have been in the same or worse condition except for our weather.
We're learned some lesson from down there.
 I hope all areas of the country will take note of it.
We're now renovating and categorizing and sanitizing a bunch of the used equipment that's being donated plus some we already had on hand.
And we're going to stockpile that at strategic locations on shrink wrapped pallets around the state so in the event of a disaster here or anywhere they can be simply loaded on a truck and taken to the major shelters immediately with out an equipment drive needed and made available at the shelter for people who arrive there had so the shelter operators have no excuse to turn these people away and make them go on another three or fourhour bus ride or stick them in inappropriate nursing home or hospital when they're not sick or injured.
Those are a couple of the things I had.
 I hope that you guys at ILRU can really spearhead that.
We need to gather this anecdotal information because I don't think we'll have much information to rely on for a report 

>> Mark: I know Lex will kick in here too.
There are a couple efforts going on that are documented.
And I think some is locally based, has some teams down there that are doing some documenting.
But also, you know, there's that initial recommendation that NCD did put out, I think those folks that are further away from maybe some of the hands on activity, just paying attention to the legislation that's being drafted right now is real important to do.
So, just echo your advise to people to document stuff, because, you know, I think also we're teaching ourselves.
In regards to that equipment, supplies, you know, collection and distribution, just the fact that east coast and west coast are actually connecting now on that.
 I think there's a lot of loan closets that centers that were empty now and replenishing those is important not just sanitizing and wrapping and have them available for the next disaster of this nature but just replenishing some of the loan closets 

>> Lex: Mike, I really would like to thank you on behalf of nerve the region for the efforts you made immediately after the disaster, you were ton phone and email offering provide chairs, you collected chair from throughout the state.
And this assure answer was vitally needed at that point in time.
It gave us a sense in the region, I think I can speak for everybody.
It gave us a sense that we were not alone.
And that was very, very important.
 I do think that we've learn add lot about equipment need in the face of a disaster and the need to do what you are doing there by stockpiling in various locations to be able to use, when necessary.
We also found, as you pointed out, some wonderful resources among our international provider partners that we were able to tap.
And there still may be needs.
 I can say the shelters here in the greater Houston area have fairly well been saturated with DME people who need things on a temporary basis at least have that mobility and, by the way, I must say that I was terribly impressed despite some of the stories I've heard with number of people whom I've met in the shelter, people with severe disability impairments who used their power wheelchairs, who's equipment was saved and rescued and transferred with them from New Orleans and other parts of the gulf cost and transferred with them by EVAC all the way to these shelters where they happen to be in Houston that took an extraordinary amount of effort by those rescue personnel to make sure that equipment travelled with the people.
Now, I know there are exceptions to that, probably a lot of exceptions and I think, again, we're trying to identify that equipment that has left some of them at that time New Orleans airport and elsewhere and get that hookd back up with people.
But, to the extent that some people actually manageed to save their equipment and get it transferred with them, I think that's remarkable.
In terms of documenting what's happening here, Mike, I can't say anymore than you've said.
It's vital fortous have documentation when we go to Congress later on to request assistance and make sure these things happen.
And, also, when we make recommendations later on about how to improve the circumstances with the federal, state and local collaboration and cooperation.
 I think that's very important.
Also, the cooperation bewean the public and  between the public and private agency.
It's been a lot of work and we've learned a lot about it here.
We will find some outstanding examples and we've already identified some.
And it's also important to document those good experiences that people have had as well as the horrifying experiences.
Richard?

>> Richard: Mike Collins, thanks so much for all you've done.
I have a question for both Lex and Mark.
There are persistent anecdotal  there's evidence that many people are being sent from shelters directly to nurs homes all around the country.
Can one or both of you speak to that issue 

>> Lex: To some exthaent's true.
Frankly, I'm a graud, if I had been on the floor of a shelter somewhere, look do you want us help you get in to a nurseing home where there's aid, a bed at that time level you can transfer to and somebody to insure that you're being fed, I'd say yeah, take me now.
And I think probably many people did take advantage of that.
Some of them may find themselves frustrated because it's hard tore get out than it is to get in.
 I guess we know that because there are people all over the country who have been in nursing homes for a long time trying to get out.
That's what Olmstead was all about.  If we can use these experiences of these people who have, because of the emergency, been placed in institutions, including nursing homes, if we can use them as examples of how it's possible.
How it's manageble to get people out in a timely way, I think we can apply those examples due to the larger population of people that want out.
So, Richard, to answer your question, yes, it's true, some people were evacuateed to nursing homes, it's happen in the Texas, Alaska, Louisiana, perhaps other states as well.
Those people are ready and needing to get out.
This is another service need that independent living centers and other organizations need to be addressing 

>> I think, just one of the key roles I know independent living centers or other civil rights groups  just service coordination and just advocacy in general.
 I think the latest news I got was that CMS is out of Dallas, actually, creating a database of folks that are  have been put in nursing homes, originally we were afraid we might not even be able to know where they are.
But CMS is taking responsibility to do that and I just think we need to keep reaching out through our nursing home transition grants or PNAs to go and visit folks 

>> Richard: Very good.
Chad, do we have more question from the telephone cue?

>> Currently we do not 

>> Sharon, will you please give us some more question from the web.  

>> Sharon: We have  looks like we will not get to them all.
This question is regarding housing again, and it says since before the hurricane there has and is lack of accessible affordable housing.
Now both the disabled and abld bodied community are displaced how do the centers for independent living find housing for those affected now that the sneed greater.
Let me do add questions have come in about the board that everyone's been referring to it in terms of resources to find and donate.
You can locate that at WWW.ILRU.ORG and it is on that main page that has equipment supplies and you just click that link and it will take you to the board.
Lex and Mark, the question was, as I believe I heard it what can be done to increase the housing stock now that we're in the midst of this?

>> There are several things happening, mostly in the larger communities, Houston for example.
As a result of this exercise we'll have the most comprehensive list of accessible housing than we've ever had in the greater Houston area.
There are many agencies contributing.
They have people on call banks calling and keeping up to date data on where there are housing units available.
Whether they're accessible or not.
This is all being tracked and coordinate in the a manner that we've never had access to before.
In fact, they are identifying accessible house that we were not aware of before.
So that's good.
But, many people will find themselves  to other cities.
I've heard today there are communities in the northeast, near Boston that have accessible housing that they've offered to help people relocate to.
Many people will have to move away from their homes long distance in in order find appropriate accessible housing.
The other thing is get on pass with affordable house that's in here.
Make sure you get some of the new accessible units available for your clients and make sure if they don't have accessble units you get them down there with a promise that FEMA will make them so.
That's, again, another opportunity in the short term there were two hundred thousand affordable units coming down to the southeast region to the gulf states.
And that will be, you know, perhaps a good resource for many people 

>> What about people with service animals.
What do they do?
Do you have any information regarding the level of acceptance at shelters across the country?

>> Service animal if they are indeed a service animal, the Fair Housing Act insures that they'll be able to stay with them in the permanent housing that they secure.
However, I've heard that shelters seem to be discriminating.
And they shouldn't be.
People have a right in our state, in Texas for example, there's a state law that clearly provide it is right for a person to have with them a service animal no mat wrer they are in any public or private facility in the state.
 I think those laws must be in other states as well.
If somebody is denying you the use of a service animal that you require, by golly, that's the time to call up PNAs and an attorney, that may be helpful.  

>> That's protection and advocacy organization within your state.  

>> You can also call the state Attorney General's office under the circumstances that you described 

>> In a shelter, who is responsible for providing one's durable medical equipment?
FEMA, American Red Cross, Medicaid or another organization?

>> I don't think  that's a question – 

>> Lex: That's a question that does haven't a necessary right answer.
Who ever provides it is the one you're going to get it from.
To the extent that there may be a responsibility there, I'm not certain that that's been detailed.
 I don't think in a disaster FEMA or the American Red Cross are "required" and responsible from that standpoint to provide DME.
More likely the shelter manager has an obligation to provide appropriate assistance to those people who are house in the shelters.
Frankly, that's why a number of people that stopped at one shelter had been shuffled off to another shelter.
That's not all bad, when those people have been shuffled they've been shuffled to a shelter that has better resources, more resource to provide assistance to those people that do have extraordinary needs.
So, you know, to answer your question, I'm not sure it's appropriate to say who's responsible.
To say who will do it, is an um possible question to answer because you just got to get the help wherever you can.
Ordinarily, who ever runs the shelter is responsible for the people in the shelter.
And, there needs must be made known to that responsible individual who has a duty then to try and meet your needs.
It may not be resources that the shelter manages, but through coordination of other community resources.
In other cases it may be appropriate to ask, to be transferred to a shelter that has more resources 

>> Mark: I think there's short term and long term needs to the work of people like Mike and folks that have been getting equipment to people.
 I mean, there were manufactures out there that donated.
A lot of that was to meet a short term need.  There's a lot of people to meet custom systems.
 I I'm just encouraged to get a new custom system just like they would if there hadn't of been a disaster.
They were just looking for replacement or new technology if there's a claimant and push that envelop until they get what they need long term.  

>> Richard: We're coming up on the hour and we are going to continue to take your questions after the hour, but, Mark Johnson must leave in just a few moments.
So Mark, before you do leave, is there anything you'd like to say in closing for you?

>> Mark: Well, I actually got a little bit of a change, I can hang on till 2:30.
 I I'm going to do that and just wait till closer to then.
 I guess, just don't want people to lose sight.
Everybody wants to help, and that's a great thing, but all of us don't need to try and do it all.
We need to focus where we might be good.
There's little networks and coalitions forming around the housing issue and making sure that if something is constructive it meet it is kinds of access that we've all been advocating for years.
 I just think there's a lot of those kind of policy opportunities.
The legislation that's being drafted right now in Congress now, we've got to make sure that our needs are reflect in the there.
And I think Lex alluded to a little bit.
If there's lessons to learn in this process that aren't just going to be about disaster, but about how a service system should run, then we need to take advantage of this timing.  

>> Lex and March Mark we've heard some states are considering legislation that in their views, it's an attempt to circumvent the ADA.  

>> Because it's an emergency, I believe some state legislatures that,  considered suspending disability and certain other civil rights in mrm contracting and other kinds of provision.
 I have not heard so much about this week.
So it may be that the justice department who were seriously concerned about those issues, last week, manageed to get the word down that this is not going to be  well received and may result in action by the federal government to insure that the states don't do anything like that.
Again, however, this is an emergency, and people behave in different ways in emergencies.
State legislatures and their members may be able to rationalize what we would consider to be an unfathomable kind of provision.
So, I think what advocates need to be aware of is that both states and the federal government are passing legislation right now  communities are passing resolutions that will affect programs for the short and long term, be aware that that's happening and stay vigilant.  

>> Chad, do we have more question from the phone.
We have another question from Mike Collins.  

>> Lex, I recently found out, I finally got a number this morning that about four thousand survivors have been relocated to California.
 I know Arizona has taken a huge onslaught of them.
Part of the problem we're facing is they don't go in to mainstream shelters, they're being housed through city offices, United Way or churches and I think we all need to use that vigilant word again and try to be on top of any local efforts, and I'm talking specifically about independent living centers who can be meeting these people who can be  yesterday we found in and out San Francisco that somebody was there that needed a scooter  power scooter  and is being delivered to her this morning.
 I received a call at 4:30 yesterday.
Our local center had one they could help them with.
Another person has been put in inaccessible housing in a wheelchair and can't get in to the bathroom. They're looking for house that's accessible which is hard to do in San Francisco and a lot of our cities.
 I think it's really important that the centers push the bubble and get their nose in the door and say listen, do not bring these people to town with out checking with us about what they may need because you're doing a big disservice to them and to community as a whole 

>> It's hard to anticipate, Mike, where these people are being sent well enough in advance to be able to plan services for them when they arrive.
 I can tell you that, in the large centers here in  that are transferring people out.
They're trying to pave the way by having social workers call agencies in communities the they're about the land in.
 I am most concerned about people loosing touch with the system and the system losing touch with them during these multiple moves.
 I think it's very important for people with disabilities who are affected by these changes make sure social service agency, independent living centers and FEMA have their up to date address when they move from one point to another.
Make sure they up to date FEMA on where they are so that when services become available they can be reached.
That's incredibly important.
And independent living centers need to be aware that folks are going to be dropping in to your communities, centers all over the country are going to discover new clients as a result of this.
The best thing to do in that case is to make your public health authority aware, because usually, in each one of the city in America, there is an emergency preparedness office.
Many of those offices are associated with the public health department and get to those Emergency Preparedness in Boston, Portland, Chicago, wherever you are.
Make them aware you, the independent living center have services you can provide to people that may be evacuated to your community 

>> Sharon, other questions from the web?

>> Some states and county require preregistration of people with disabilities to qualify for service in the emergency evacuation and sheltering instances.
What problems, if any do you see in "requiring" preregistration of people with does abilities for accessing special need shelters?

>> Sharon, this is Lex.
 I I'm not aware specifically of the cases that the person who asked the question was referring to.
 I do know many communities offer the opportunity to voluntarily register in the event of an emergency presumably those people would be known and they would be evacuated appropriately.
They would be part of the city's defense preparedness, Emergency Preparedness plan.
For example, my family has registered with the fire department so that if another emergency occurs in our city, they'll be aware that very likely with out mobility or with out a means to communicate and hopefully by registering somebody within 2448 or 72 hours before we expire comes to check on us and see if they can help us.
 I I'm not aware  that is certainly not a requirement here.
 I I'm not aware of the requirement.
 I think it's a good thing for people to do if they have the opportunity and they're clear about what kind of response they might expect by preregistering.
In terms of people who are required to renlster before they're ellinlble for services.
That sounds like a real extraordinary situation.
 I'd be curious to know the details about that.
 I don't think that should be the case 

>> Mark: Lex, or Richard, do you all want some of these kinds of things sent to you just so we can have a record of 'em?

>> Mark, let me just – 

>> From two advantage points.
First of all, speaks as the chairperson for the National Council on Disability.
We're certainly going to produce a report and more than one for the Congress and president that will document some of these issues we've observed here and make recommendations.
The council likes to include recommendation was their report.
So if you have suggestions not only about what the problems are, but how to fix them.
E please forward them to me, to the council that is main email address to any of our wonderful staff there.
Secondly, ILRU is in the mro ses of trying to document, for the purpose of illustrating to members of the administration and members of Congress, the circumstances that people face in this disaster.
So if you want to copy ILRU on many of these issues, that would be a value.  

>> Richard: Chad, do we have question from the phone?

>> We currently do not.  

>> Sharon, let's continue with the question from the web 

>> All right.
Will Medicaid, Medicare replace medication if that person needs them immediately and how difficult is replacement of those medications if an individual with a disability has lost their identification?

>> Lex: That varies.
It depends on where you are.
My advice to people who require medication and they need it right away is go to an emergency room.
If you have your pill bottle, even though it may be ementty with you, most emergency rooms right away replacing scripts for empty medication.
And that's, by the way with out necessary birth certificates or other identification.
You probably do have a social secure tu number that you can remember that will help them verify you are the person who's holding the pill bottle.
Medical personnel have been exceptionally good with helping people deal with these crisis related situations.
Doctors, probably those in the health centers and others, working in shelters and emergency rooms are well aware of the problem and dealing with it quite effectively.
On the other hand, people who simply show up at a pharmacy with a need for medication are going to find it hard going because the pharmacy cannot write prescriptions and they're not going to be very sympathetic to people who just show up and want drugs.
You need to get a prescription, you need to get it from a qualified physician, and best way to find out about things that are qualified is emergency rooms and shelters 

>> How do you accommodate, in these kind of related, an individual who has a hearing impairment and requires a sign language interpreter for communication access and the same would be the case  what would be the conditions for people to require a PA in a shelter to received those services 
>> There's both short and long term answers to your question.
Because of the sheer size of this disaster, I'm certain that not all shelters have sign language interpreters in them and there may well be some deaf and hard of hearing individuals that are placed in shelters where there are no trained or capable people of assisting them with communication.
Clearly, they should make them, mostlily efforts will be made to meet their needs or another location where their needs can be more appropriately met.
In the large shelters, particularly the ones that I visited here in Texas.
There are desks with sign language interpreters working 24/7 that have been provided by local community agencies and by city government.
People are well served in those shelters.
Again, my advise, if you have extraordinary or special needs, ask to get transfered to one of the larger shelters.
That's the short term, that's the emergency situation in the longer term, then, caseworkers, American Red Cross and local agencies will have to help meet those more permanent needs for people that have been dislodgeed from their support networks 

>> Where can we get a list of shelters that are operating currently?

>> Mark: I got a list  each state has that list.
You may be able to get the list through the public health agencies here.
Actually, if you go to the FEMA web site, you can actually get access to it.
You can actually find your way in to your own state and find a list of shelters the in your own state.
That doesn't mean it's current because of the magnitude of this, but a lot of those are.
A problem I've had personally is designation of special needs shelters.
 I continue don't know about you, Lex.  

>> Lex: Specifically, what's your problem?

>> Mark: In our state, they weren't designated as special needs, just shelters in general.
There's actually a spread sheet of with little check marks whether it's special needs or not.
 I think what tended to happen, here, when those folks as they call 'em, special needs were triaged they were just sent to the nursing home or some medical facility 

>> Yeah, again, and they're in the metropolitan areas there are indeed special needs shelters are those that have extraordinary services.
The larger shelters here have post offices, libraries, pharmacies both free pharmacies and the commercial pharmacy located inside them.
They have Eye Masters kiosks where they're making glasses for them at no charge.
And many other services available.
Includeing the interpreter services.
So, these are clearly designated and refer people there who do have extraordinary needs.
Clearly, this whole business of how you set up shelters, man them and whether the services are suitable for people with disabilities is one that has to be address in the the future.  

>> Mark: Folks that never made it to that level of service of the folks that are in the nursing homes are still just waiting for someone to talk to.
 I think, it's a significant role for the independent living center s is reaching out to those folks because they're not quite connected yet.
Some of the social work, the nursing homes are doing the best they can.
Some of the folks that know that nursing home is doing the best they can, but they're not hooked in to that level that Lex just described.
So I think, if you had your choice please focus on some of those folks that could get lost.  

>> Lex, a question for you and Mark also, if you like.
It's not too soon to think about disaster preparedness.
The next disaster could be right around the corner, unfortunately.
For individuals, who would be your recommendation of the two or three most important things that individuals can do to prepare for disaster.
People with disabilities can do to prepare.  

>> Mark has a list of, tems that he'll be glad to email you.
One of they will is to be packed.
 I I'm telling you, I have two bags that are packed that have enough medical supplys to last a week in the December rt, frankly, that include twos bottles of water, some purified water.
Catheter supplies and so on.
Two bags are packed ready to go, hang them on my wheelchair and get out.
The second thing I think people need to have is an exit strategy.
They need to know which routes they're taking out of town who they're going with and where they'll land.
My suggestion is land far enough away from the disaster so you'll not be caught in the of the of chaos.
We near Houston, we're subject to hurricanes.
I'm taking off for Oklahoma at the earliest point I'll not stop up in Texas there'll be too much chaos.
There's be too many folks affected by hurricane Katrina.
If you have the toont to get out before the storm, do it, and get as far away as feasible.
If it's a sudden disaster or emergency that relates to terrorism or some other act where you don't have any warning, you should still have an exit strategy.
You should know your options in terms of finding transportation and should have a sense of where you would want to go under those circumstances.
And, you know, another advantage of going somewhat further away, taking a hop skip is that you might be able to book a place to stay easier the father you get away if the center of the disaster.
So that's my advice.  

>> Mark: For quite a while on that NOD.org site or ILRU site.
There's quite a few curriculums out there that independent living centers and other organizations can be using.
It's kind of like when we had the whole situation with Tari Schiavo in Florida.
People took it as an opportunity to say what are my instructions.
Are we providing this information to folks that are coming to the centers so they can think through what Lex has already figured out and prepared do 

>> People have been exposed to the centers for independent living.
They want to know where they should send their document after the final crisis 

>> ILRU at ILUR.org.
And NCDINFO atNCD.gov 

>> Let me just mention that following the 911 disaster, ILRU published two newsletters dealing with the disaster and with preparedness.
And we're going to be updating those newsletters within just a few days to address issues for centers and for people with disabilities.
This is also a good time to remind those listeners on the ILRU.org home page.
That's www.ILRU.org.
Three top  at the top of the page there are three links that are dealing with the Katrina disaster.
One link is a link to resources for people with disabilities and organizations that are supporting people with disabilities.
That's a link to a very full webpage of resources.
Second is the discussion boards where people are exchanging messages about equipment needs and other needs for individuals and centers.
And the third is the ILRU journal where we are highlighting some of the most important information on a daily basis and in some cases telling some of the stories of the disaster.
So, suggest that you take advantage of all of those links and on the daily journal,  there's also a facility which you can use to comment on what we posted and we've had several people who have already commented and we encourage you to do that.
Question for both Lex and mark.
We've talked to you about individual in preparation.
What about centers for independent living.
What are the three things you would recommend that centers do to prepare for the next disaster?

>> I don't know whether there's three or more Richard.
But one thing they need to do that we've learned from this disasters,   they need to protect their client list.
They need to get those lists stored outside of the center itself and they need have multiple copies.
One thing they might consider doing.
And I think we have to advise centers to do this all over the country is to  hard drive web space that's up there in the virtual community and load our client list and other important center data up there and keep it up to date because it really has been difficult, I know, to recontact a lot of the people who they were serving prior to the disaster.
That's one thing tment second thing is to do the same thing an individual would do.
If there are thing in the center, physically that need to be removed.
And you're going home on Friday and there's a storm brewing, take some of those things to a safe place because you may not have a facility when you come back on Monday.
That has been very clearly the case here.
And be prepared evacuate not only your staff, but also to assist your clients in evacuation.
Some people who have difficulty with communications will need telephone tree set up to help them.
And I think it's a good thing for the centers to begin to help individuals set up telephone tree.
People caring for them individually that can check on them in the event of a disaster 

>> Mark, what about you?
Any recommendations?  

>> Mark: All those are good.
 I think if we just don't look at it in the context of disaster, but the things that we need to do any way.
Understanding our community resources.
 I think transportation issues are huge here.
And I think that's something people want to think through is what are the available ones.
That means caller 911 if that's what it means to get out.
 I do have go now.
I have one thing left to say.
 I just want to take the opportunity for Lex and his leadership on this and ILRU what you've been doing and what you're going to do.
It's interesting how things bring peel together.
But, for me, you know, our community has really come together here and acts like a community.
And it's really the first time I've seen it act this way since 1990.
So, I think there's aless on learned here, when we do come together and we do work together.
We can accomplish amazing things.

>> Mark, thank you for all you've done and being on this webcast.
 I know you've had some very long day in the past couple of weeks.
You certainly have played a key role in supporting individuals and centers.
And many people across the country appreciate that.
And – 

>> Just be thinking about myself and ADAPT, we'll be in DC September 17th22nd.
Check us on the web site if you're not going to be there.
Send us notes or whatever.  

>> What's that web site link?
Just ADAPT.org for Washington DC.  

>> Thank you, Mark.  

>> Thanks.  

>> Chad, do we have questions from the phone?

>> We have a question from Joe.
Go ahead with your question 

>> Hello.

>> We have a loan program and I know there's need for equipment.
What's the easiest way to get it to the right place?
Any connections been made say for national guard or trucking companies to get things down there?

>> Joe, there is a transport company out of Atlanta, I'm sorry, Mark left, because he probably has the contact information.
We'll post it on our web site at ILRU.org.
But there is a storage facility that has been graciously contributed in the Atlanta area.
And apparently transport to and from that particular facility at laes in the region of this particular disaster.
So we'll post that on our web site.
Do you have any question?

>> Yeah.
Given the disaster and all the changes to section eight and the proposed changes any way.
This just underscores the need for more housing.
 I know it's been mentioned before.
Can we, you know, every disaster has an opportunity.
And this is something I'm thinking about Section 8's that were frankly we need more of.
So can we use this as an opportunity to under score the need for this?

>> No question.
It's already been recognized in Washington as a critical issue.
 I think this particular episode and the crisis associated with it.
The emotion associated with it.
And the empathy that's resulted from it have probably captured more attention than anything we could have done to demonstrate the real need for accessible housing today.
And I think I agree with you.
We should take advantage of that lesson to insure that we have better registries that we understand clearly what the need is.
And that the communities throughout America are doing more to insure the needs for people with disabilities are being met.  

>> Is there going to be an infusion of any kind of funding for the shelters?
Because here in Massachusetts we've been working with ADAPT, we usually get the same response is we don't have the money.
We don't have the money.
And meanwhile, you know, given the situation, people are going to be shiped to Massachusetts, that's not going to work.
And, I'm sure that's the case in other states 

>> Joe, are you talking about the shelters in Massachusetts that are receiving people from the disaster?

>> I'm talking about the homeless shelters in general Massachusetts.  

>> That's a separate issue, local advocates are going to have to work on the disasters shelters in their communities.
Disaster shelters are another matter, disaster will certainly receive an infusion of money from FEMA.
It authorizes support for people in disasters.
If you're not familiar with the Stafford act, I encourage you to look it up.
It's a complicated piece of legislation.
It will be invaluable to you and your advocates.
Again, we'll have a reference to that on the ILRU site, so you can go directly to it.
In terms of resources in other communities outside the disaster areas, states that are not part of the presidently declared disaster are really going to have to find local resources to help supplement the services that have become apparently under served as a result of this particular crisis.  

>> Joe, thank you for your call.
Everyone, we appreciate you participating on this webcast today.
Lex, thank you for your presentation and I know that you've had sleepless nights and long, long days as you have worked both to support individuals to help them find the resources that they needed and also on a larger scale, nationally, to try to see that the systems were more responsive for people with disabilities immediately after the disaster.
And, your work there has born fruit in making things somewhat better as we've gone through this disaster.
So I know that everyone appreciates what you have done.
Lex, anything that you'd like to say in closing?
>> No, I'd just like to say people are in the midst of disaster.
People all over the country as a result of this.
People with mental impairments.
Really at risk for serious breakdowns now.
Even those who were not in the disaster because they've been affected by their empathy for others that have been in the disaster.
We have to care about people.
There are people with mental retardation that's been placed back in institutions as well as those who are mobility impaired that wound up in nursing homes as a result of that.
We can't forget these people once the crisis has past.
It's going to be our job for the next three to five years to insure transition back in to the community for these folks and to insure we're better prepared for the next disaster.
Richard, thank you and colleagues at ILRU.
Thank all of you, who are on the line here to help others.
Have a good day 

>> Thank you.
And we'd like to say, in closing that this webcast was sponsored by the Rehabilitation Services Administration and several other funding sources.
And you'll see those funding sources on the web site.
The opinions that are expressed here are not necessarily those of the funder, but we are pleased to offer these webcasts and will continue to do check back at ILRU.org for a webcast on a regular basis.
Sharon, would you like to close our webcast 

>> Thanks, Mark, Lex and Richard for participating today.
Again, we will have further webcasts at www.ILRU.org.
As well as we will have the archives text transcript and audio recording as a presentation to share with those colleagues that weren't able to be here today.
Also, I'd like to thank those that made this presentation possible Marisa, Mark Gordon and Don, Ron and CommuniquË InteractionActive Solutions for providing the C.A.R.T. today.
Everyone have a good afternoon and take care.




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