ROUGHLY EDITED COPY
WEDNESDAY, MAY 11, 2011
12:45 P.M. CDT
IMPLEMENTING AND ENFORCING OLMSTEAD
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This is being provided in a rough draft format. Communication Access Realtime Translation (CART) or captioning are provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
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(Standing by.)
> MARK JOHNSON: All right. Good afternoon. Good afternoon.
Actually, I just wanted you to be quiet again.
I hope you had a good lunch and a little bit of a break and maybe some of you went out into our July weather in May, because I know it's hot out there.
Just imagine that with about 90percent humidity. That's what is really fun, about late July, early August.
The folks working the Internet connection here reminded me that there are a number of participants out there on the Internet and theres at least 30 sites, meaning there are more than one people viewing this.
So be mindful of that and you can turn around and say one more time, wave at our folks back there.
Once again, all this will be archived. If you want to see yourself waving or want to show your boss that you were actually here, all you have to do is go to the archive and say: See, I was there! At least I was there when we were waving
(Chuckles.)
> MARK JOHNSON: So, it's a strategy thing.
Number two is just I know we might not get to all the questions of you folks out there in cyber world, but your questions will be answered sometime in the near future.
You have ILRU's contact information. If they don't answer your question in a reasonable time frame, don't call me.
(Laughter.)
> MARK JOHNSON: Number three is in the back of your packet, you do have a front and back resource page. I mean, it's loaded up with the latest and greatest related to this issue.
And a couple resources have come up already this morning. My guess is some more will come up through conversations, what not. Those are being added to this resource page. You know, the stuff we talked about this morning. Everything from lore wrist's website if you want to buy some of her art to the contact information for the office of civil rights, from the people who want out, the people who might go in if they don't have services.
Once again, justice and OCR, and good lawyers can only act if they have real people to tell the stories about.
So that resource page is in your packet and it's evolving. If I understand all right, ILRU has a wiki site. I messed up earlier and said they were Twittering. They actually have a wiki site and that wiki site is being updated once again as we are here. That will make that wiki site only as good as y'all want to. If you want resources and then you have that opportunity.
Last before we have the conversation about barriers, to Olmstead implementation, last is there was a preeval, is that right, to this thing? There's an ongoing eval and there's a post eval. So there's just an eval is what I'm trying to tell you. Meaning IRU, Tim was reminding me that thus far trainings around Olmstead have been pretty much oneonone, you know. What is it? A little history of it, that kind of stuff.
So this is the first one that has been maybe a little more towards strategies and actions and building the national plan of action here, folks.
So you are a part of a first. So the pressure is on to deliver something by the end of tomorrow that can compress all can impress all of the people who are not here.
Seriously, take that task seriously. Constantly evaluate this process. How can it be better? Who would you want to listen to more? Don't say anything about the MC.
(Chuckles.)
> MARK JOHNSON: Unless it's all good.
So we are going to spend about another 25 minutes just I was having a conversation with one of your colleagues. I didn't get his name, from Denver. Bill. We were beginning to talk about barriers to implementation. Bill, do you mind jumping right in with what you were telling me is one of the barriers you're having in Denver? We'll document the barriers. They'll be editorialized and stuff like that. Go ahead. Microphone. Again for the ... for all of us.
> AUDIENCE: Is that it? So one of the things that I'm grateful to be here to hear is that I thought I was behind. But as it is turning out, I'm doing okay compared to a lot of people.
(Chuckles.)
> AUDIENCE: You know? And I have been doing this since The Act was actually enforced. What is happening right now due to some changes in human services, I'm finding some barriers coming up. I think that's just due to the political stuff that is going on in my state.
But what I've learned how to do is to take I see these as just challenges. It's an opportunity for me to work this program and be able to do some success.
I have almost 99percent in term of placing people in homes, transitioning from nursing homes.
There's a bill there in Colorado which is called, project access. Which will allow me with HUD to get people in section 8, transitioning them out of the nursing homes and out of jails also.
So in the time frame that it takes, because HUD has to do the inspection and I have to get the certification from the landlord, and doing all these things. So I have been learning how to work that program into the community. And part of this thing is that the people who are implementing these programs don't really understand how this process works.
Right? What I was here to try to fine out and the main reason I came down here, how can we work as a coalition to take people out of nursing homes in a timely manner? Because these people are stuck and their expectations are really high in terms of trying to get them out.
I'm here also to assist anybody in what I have been doing and the strategy.
The other thing is relevancy. You know, getting people out of the nursing homes and getting them out of jails is not a huge concern in terms of relevancy because if you are taking someone out of Wisconsin and putting them down in Denver, there's a whole cultural thing that goes on. There's this whole socialization that goes on that I was looking to see how other people were doing this.
So if there's anything
> MARK JOHNSON: One barrier is like Bill mentioned earlier, some housing stuff. The other is just if you have been in an institution for awhile, you probably adopted what they call institutional behaviors. That's a transition when you're in a community and all of a sudden there is nobody there to lock up the house maybe or turn this off or turn that on or you told your attendant, oh, I don't need any more done and all of a sudden you're there.
There's a whole adjustment process for lack of a better word. Some of that is culturally if they are move from other areas. For years, Tennessee didn't have anything. And they were literally moving to Denver.
You know, that's a cultural thing in itself going from Memphis to Denver.
(Laughter.)
> MARK JOHNSON: It's a good thing because I lived there for awhile, but it's a shift.
Amber? During the break you mentioned something that is going on with our colleagues in fillly, the center there. Something that they just experienced. Can you talk about that as a barrier to Olmstead implementation for the folks in Philly?
>: Amber: So what I was telling, this is Amber from Chicago. What I was telling Mark was that last week on Friday the Center for Independent Living for Philadelphia, they have something like 400 employees and due to state Medicaid budget cuts on Friday they laid off 132 of those employees. That's definitely a barrier to Olmstead implementation when you take away the nonprofit infrastructure that supports community integration.
> MARK JOHNSON: Other barriers, folks, that maybe you are experiencing at your center or in your state? Over here, DC? The district. The other state.
> AUDIENCE: Can you hear me now?
> MARK JOHNSON: Get a little closer.
> AUDIENCE: Yeah, get up on this thing.
I guess one of the biggest I'm Richard Sims from the DC Center for Independent Living, Washington, D.C. The biggest issue we have, the issue of accessible affordable housing. I mean, the unit we are getting people out, getting them IDs, providing transportation. Even trying to store furniture for them, helping them look for furniture.
There's no place to go.
> MARK JOHNSON: Housing again. Other barriers? Mike?
> AUDIENCE: I think a couple of the biggies that probably have everywhere is one, the perception that there's not enough resources to fund community programs. Without thinking about what else things are being spent on. Again, the other thing that I think everyone deals with is the complexity and fragmentation of the support systems and some of the housing things that people have talked about are an example.
In Wisconsin, if we want to get someone into a public housing unit or a voucher, there's 216 or something like that, housing authorities in the state of Wisconsin. So trying to make sure that not only is there housing somewhere, but there's housing available that the person can afford in the place that they want to live.
> MARK JOHNSON: Real good question. I mean, we mentioned earlier today silos. You know, if you're this diagnosis or have this label there, if you're this age, it's there. Where are the point of entries? Are they multiple?
Some are means or incomebased. A lot of fragmentation, a lot of silo stuff, a lot of lack of coordination.
Other barriers that you are experiencing? There's one big one that I'm surprised nobody has mentioned yet.
> AUDIENCE: Transportation.
> MARK JOHNSON: We have transportation as one. Go ahead, elaborate on it. For example? This is our Dib tech, by the way. Or if you're in this region, your DIB tech.
> AUDIENCE: Is it on? Transportation, yeah. We get that even in a city like Atlanta, we get that a lot, as Mark knows.
Marta, our metropolitan Atlanta rapid transit authority, which probably many of you used to get from the airport to here, has definite challenges for persons with disabilities despite the fact that we have had multiple lawsuits and all sorts of things to try to fix the problem.
But in fact, I went to a MARTA meeting yesterday to their elderly and disabled access advisory committee for the first time. This is the first meeting I have been to. It just sounds like the same old story. Nothing has changed. Everybody has problems with the bus stops. And the noshows on transit and problems with paratransit. It's the same old broken record we have heard time and time again.
So I know that's a barrier for people because working as I do at the ADA resource center, one of the 10DB tabs in the United States, that's where I work, we hear it all the time. I can't get from point A to point B because I don't have transportation. That happens in the small towns, the medium size towns and the big towns.
> MARK JOHNSON: Some of that, it goes back to what Bill was saying, you known the Metro Atlanta area here there's limited train service because it's just not there. It's a young system compared to Metro DC. There are a limited number of bus routes.
In addition to that there's a limited number of paratransit. Legally, paratransit doesn't have to go everywhere, right?
When you think about the fact that in your city, my guess is the fare boxes generate less than 10percent of their revenues. What do you think when they run out of money? They start cutting the routes. That's some of the stuff you're starting to see in major metropolitan areas. Public transit never paid for itself. That could be exacerbated to the budget stuff.
Back to Bill's point, allies. Who are the other allies working on transit issues? Are you once again talking to them? There are a lot of groups out there that benefit from public transit but that company less it.
There's a table in the middle. South Carolina?
> AUDIENCE: Financial, I want first month's rent, the rent you have, you have utilities, whatever else, deposits.
> MARK JOHNSON: Some of the transition costs. If your assets have been liquidated and you have been forced on Medicaid and been forced to live somewhere you didn't want to live, now you have nothing, including a couch.
Even though there's some stuff at the federal level in some MFP stuff and this that and the other, there's still issues around that.
Kelly, did you have something? You were squirming.
Anybody else?
> AUDIENCE: Yeah. Besides that financial issue
> MARK JOHNSON: Use that microphone.
> AUDIENCE: Besides that financial issue, the other issue besides that also is gas and electric. If you are caught in a nursing home and you didn't pay that bill, when you come out of the nursing home that bill is waiting for you. That telephone bill is waiting for you and that also poses a big barrier.
Then if you have a record, right? When you come out, at least in my state they run CBI reports on you. So you have the CBI report. Your adjustment to getting back in the community, plus those bills.
And if you're really jacked, then all the furniture and all your stuff has been taken away. So you don't have any furniture. And then well, I can go on, but that's okay.
(Laughter.)
> MARK JOHNSON: So a history of consequences of some bad decisions you made, make an inability for people to see that you're a changed person and want to get on with your life. Sometimes people hold on to that bad stuff and hold it against you.
You still haven't mentioned the one I'm really thinking about.
> AUDIENCE: What about getting your SSI or SSDI back, or whatever financials you had before you went in? Sometimes they've taken it and you're not getting it. How long does it take to get that back?
> MARK JOHNSON: I guarantee we have people who can help you with that. Over here, yes.
From the Georgia state university.
> AUDIENCE: Yes. My name is Stacy Ramirez from Georgia. many of us in this room have sat together at the Olmstead planning committee. I thought I made it, arrived as an advocate to be on this Olmstead planning committee and I was going to make real systemic change. That has been Talley, how many years ago now? Four? Three and a half years ago and hours and ours of planning.
So it's my opinion that the Olmstead plan is a bit of a barrier in itself in that we spend all this time planning and no time building and action.
So that Bill mentioned community building. I think that unless we really work hard on building communities around ourselves, circles of support around ourselves and those that are coming and transitioning from the institutions, all the bureaucratic conversations we are having here, yes, are important. But it's the friendships and relationships. It is the life well lived that we all deserve that I think is important.
> MARK JOHNSON: You can always tell people who come in after lunch.
(Laughter.)
> MARK JOHNSON: Because you will appreciate when you go back and look at the archive of this, the whole conversation about plans. You will enjoy that part this morning because it reinforces that.
But I think your point is well taken from the standpoint of when I was speaking of Holly there in Memphis, Tennessee and saying how much that family had been through and really how valuable services the managed care companies providing her. The issue is, she still can't get from point A to point B on a consistent regular basis.
The point is that she still has limited friendships. Some neighbors, her church, whatever. But those whole circle of natural support or people knowing you exist, putting a face on yourself.
When I asked her, I said, well, Holly, do you know who your state representatives are? No. I said so that means you have not invited them to come visit your house? No.
I said well, you know what? You don't exist in their mind. They might get this report about how much is being spent on blahblahblah, right? And as Bill Henning said earlier, they'll mark it red and say spending too much.
But when they have to put a face on that potential budget. I said: Holly, I want your state reps, every time they have to vote on this issue, to see your face. Until you invite them to your home or go to them, you won't be that face.
Any other barriers? We have ten more minutes on barriers before California takes the stage.
> AUDIENCE: Hi.