FINISHED TRANSCRIPT 
EXPANDING HOUSING OPTIONS FOR 
 PEOPLE WITH DISABILITIES  RENAISSANCE HOTEL CHICAGO, ILLINOIS 
 THURSDAY, AUGUST 9, 2012 
 9:00 A.M. TO 4:45 P.M.
This text is being provided in a rough draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. 
***

>> ANN DENTON: So hello again, everybody. Let me say how much I enjoyed the Access Living presentation this morning. I think it was great. I thought it was wonderful.

(Applause.) 
Yay! 
(Applause.) 
Yay! Come on! 
(Applause.) 

I want cards from every single one of those people. And I can find them if they refuse to give them to me. 

My job over this lunch hour is to give you something that's actually fairly narrow topic. It is a little topic, compared to what we've been talking about. We've been talking about all of us have been talking about getting a fair share of resources for housing for people with disabilities. 

And I love the radical nature of what I have heard this morning. I have to say that I have -- I grew up in the behavioral -- on the behavioral health side of the disability issues. So our path has been a little different. 

But none of less, I will tell you, I want to tell you something about advocacy around housing for people with behavioral health disorders. And that is, that we come from a tradition in our country where people with behavioral health disorders have been institutionalized. 

People were placed -- in the bald old days -- bad old days, people were placed in state hospitals and never to return to their communities. And in the early '60s they passed the community mental health act that established the community mental health centers without the least little notion of how people were going to go from these institutions out into the community. And services were not funded at a level that would permit that. 

So despite the fact that we have had community mental health centers since the early '60s, the sad thing is that for many, many years they served what we call the worried well. They did not really provide the community-based serves for people with serious mental illnesses. 

Over the past 50 years, and I'm sad to say how many of years of those I have been active in the behavioral health field, what has happened is that over time publicly-funded systems have narrowed their focus so that they are serving instead of the worried well, people with significant behavioral health disorders. 

And usually in most states, services -- publicly-funded services for people with mental health illness are tightly funded. They are -- funneled. They are diagnostically related, people with schizophrenic, polar disorder, affective disorder, major depression as an example. 

There also is in order to qualify in most states for publicly funded mental health services, a functional scale. You have to have what is often called a significant functional impairment to qualify for mental health. 

So those of you who are working in communities and have people with behavioral health disorders under your umbrella, it is increasingly -- I think we're all working together. 

What you may find sometimes is that someone using -- who you think has a mental health disorder can't get into services. And I want to be the context for that. It creates huge problems in our communities around access. 

None of less, if these systems are allowed to just go along Willie, nilly, they'll serve the worried well because the worried well are easier. That's the radical me saying that. That's the SAMHSA approved statement. 
Yes, Ma'am? 

>> WOMAN: Can you give a couple examples of what would constitution a significant functional impairment? 

>> ANN DENTON: That's great question. That's going to vary by state. Really what we're talking about is someone who has trouble with activities of daily living, has difficulty related to their symptoms. So if someone has schizophrenia and are hearing hallucinations, it is difficult for them to ride a bus if that's active. 

So that's the kind of thing that these screening instruments look for.

Okay, so that was completely unasked for by our organizers, but I just really felt the need to give that context. 

What I want to talk about is housing, because housing -- coming out of that context, people with behavioral health disorders, serious mental health illness and a diagnosable substance abuse disorder, have been persistently institutionalized, and it is counterintuitive. 

One of the things that we know about people with schizophrenia, this is my favorite example I already used it at this table, forgive me, but one of the things that we know about people with schizophrenia is that they are very vulnerable, not vulnerable, but they are sensitive to environments with a lot of stimulus in them. So we put those people in group homes? Really? Does that make logical sense? No. And yet that's the kind of bureaucratic decision or unthinking decision that people have been making about people with serious mental illness for many years.

What I'm going to present to you today is the physical substance abuse mental health services administration, I'm going to give you their take on permanent supportive housing. 
This is what SAMHSA says, and this type of housing is just like what we've been talking about, what Amber and Beto had slides up there, that type of housing, it is on the list. Permanent supportive housing. We talked yesterday about the fine line to independence and enabling. 

I will tell you that on the mental health side we're sort of radical about making sure that people have what they need in the community to be successful. And I think that we would cross your line over and over again, but our people don't need, perhaps, adaptive equipment or an attendant. Someone with behavioral health may not need that. But what they do need is intensive support services. They might need prompting to take their medication. But just because I need prompting to take my medication does not mean I should be in a special housing setting. That's the radical. 

Yes, sir? 

>> MAN: You wouldn't actually cross our line because we would be referring these individuals to a service provider that would do the same thing you are talking about. 

>> ANN DENTON: Exactly. You are right. Okay. 

So what I want to do, I just want to talk to you, this is sort of the SAMHSA look at supportive housing, because I challenge you everything I'm going talk about on this slide presentation is going to reign true for you. We talked about some of it yesterday. 

But the SAMHSA definition. Decent, safe, affordable community-based housing that provides residents with the rights of tenancy under state and local landlord tenant laws -- everything that I have just said applies, right? Everybody agree with that so far? -- and linked to voluntary flexible supports and services designed to meet residents' needs and preferences.

So permanent supportive housing as defined here, this is the deposition in Sam Samhsa. 

The support for these evidence-based practiced and the development tool kits offers people the opportunity the tools they need to improve their practices in the world. 

The emphasis that Samhsa and the federal government has done around this comes from the idea that there are things that we know work, for people with serious behavioral mental health disorder that are not being implemented. There is a gap. Why is that? 

Come on. Wake up. I know you are eating, but why would that be? Something is preventing -- I know that this will work for Troy. Boom. I have it. Why wouldn't he get it? You have -- yes, Ma'am? Money! It is money. Money for the services. It is also the way our reimbursement systems are structured. 

Can you relate to that? Yeah. Same issues. All the same issues. 

So the cool thing about evidence-based practiced, and you may not know this about behavioral health, but you might because this is a very smart group, I learned that during the last few days, is that we know how to help people. We really do know how to help people. 

In today's clinical approach to people with serious mental illness, if you have schizophrenia, if you have bipolar disorder, if you have major depression, we may not have a magic wand for you, but we have effective treatments. There are effective treatments. We know how to help.

Would you agree with that? See, I got my mental health person right here. We know what works. 

Let me ask you this: We have some longitudinal studies that track people with serious mental illness, and 30 years out from a diagnosis, what do you think is the most common outcome for people with mental illness. Most groups get this wrong. What is the most common outcome? 

>> WOMAN: Early death? 

>> ANN DENTON: No. Well there is a higher -- yes, that's not the answer I was looking for, but, yes. There is a higher mortality rate so people with significant levels of behavioral health disorder, disabilities, and for people who are homeless, people who are homeless the mortality rate is through the roof. I don't know if that's more about mental illness or homelessness. 

No, the most common outcome for someone like this is that they get better. I know. Who knew? Right? They get better. They enter come level of that stage that we call recovery. Their symptoms decline, their retain -- you know, they attain role recovery in the community so they have jobs, they have families, they have all the kinds of things that we associate with community integration and living without a detectable level of disability. Their significant functional impairments decline. 

I'm going to give you -- there is a woman named Courtney harding, if you Google her there is a whole body of research linked to the work that she's done. She's a primary author of all these longitudinal studies that track recovery. I don't know why I got into all that because they wanted me to talk about housing, so I'm going to do that. Tim is frowning at me. 

Okay. What we mean from the Samhsa side, we talk about supportive housing. 
Tore elements is that people get -- core elements is that people get choice. Yes? Do we support choice? Yes? 

(Whistling) thank you! 

Functional separation of housing and services. Amber was having a discussion in the lunch line about that and we've talked a little bit about that here. But for us on the mental health, behavioral health side, all too often and I think you might able to relate to this, too, all too often people have told us what is best for us. Does that sound familiar? And does that work? No. It does not work. 

The third element is that the housing be decent, safe, affordable. The fourth element is that housing is integrated. The fifth element is that tenants have rights of tenancy. The sixth is all about access to housing. And I'll talk about that in a little bit before I sit down. And then the last one is the presence of flexible, voluntary services. 

I think it differs based on what you said is that people with serious mental illness who receive services through the publicly funded system, all of this has been traditionally packaged together. 

Okay. So choice, I'm not going to go into a lot of detail around choice because we really talked a lot about choice when we talked about what housing specialists do over the last two days. How do you support choice. How do you explore choice with people. This is a core element of permanent supportive housing. 

Separation of housing and services. We talked a little bit about this. Pat I think talked about it when she was standing up. But, you know, we have services and housing when they are together, sometimes people find themselves in the situation where if they violate a predetermined package of services, they don't accept a piece of the services, they can lose their housing. That's the injustice that this is designed to prevent. 

So we want to take housing and services and decouple them. 

So the bottom line -- oops -- is the case managers don't collect rent. That's the big one. Or housing specialists or anybody else providing services. 

I think we've talked about this and I believe that the team this morning talked about it and you will talk about it again. We are really talking about housing is decent, safe, and affordable. Who remembers what affordability is from HUD's perspective? How many people were listening? Low income is 80% of median. Very good. Right? Is that what you were going to say? Yes. 

But affordable is, I pay how much of my check? 30%. Okay. 

So part of the Permanent Supportive Housing movement has been all about making that housing affordable. When it comes right down to it at the end of the day, if you are on an SSDI income, -- SSI income, your housing problems are not related to your disability. Right? On some level it is an affordability issue. It is about you can't pay for it. 

Now if we fix the afford ability issue, there may be things people need to stay in their own housings, but up can't live in integrated housing without solving the affordability problem. Just can't do it. 

Another thing that we really look at is we want people to live in places that are decent and safe. Now that sounds simple, but it opened up a huge can of worms. Because my decent and safe may not match your decent and safe which may not match your decent and safe which may not match yours. Right? So decent and safe turned out to be a very fuzzy concept. 

So where SAMHSA ended up in leaning to the HUD standard. We talked about the HUD housing quality standards, and when we're looking at Permanent Supportive Housing programs, our expectation is that the units that people are living in can meet these basic standards. 

Housing integration. Let's talk about this for a minute. One of the things that I think people on the behavioral health side around Permanent Supportive Housing are fairly radical about is integrated housing. People don't want to be lumped into mental health ghettos. And all too often we've done that. Sometimes people have done that with the best intentions. And we talked about the dynamic tension when Pat and I were training the last two days, the dynamic tension -- there is dynamic tension all over the place but one of the things we talked about is, if I'm going to go through all the trouble to develop housing and let's say I develop 100 units of housing, it makes, you know, there is a surface logic to have it all 100 units be for my people! My people! I want everybody, you know, to get -- and the truth is, when we segregate people like that, it has unintended effects. These are research-based assertions. It is not just radical Ann standing here telling you that. 

So we're looking at Permanent Supportive Housing is integrated, and that does not mean that does not mean that you build an apartment complex and put a wall around it and because the apartment complexes on either side of it have unlabeled people living in them, that it counts as integrated. We're talking about who are your neighbors? Who are the people you interact with? Does this language sound familiar? Those of you who know Olmstead. 

And Olmstead was based on what? Two women in Georgia with what kind of disability? Psychiatric. Psychiatric. Might have been both. 

>> WOMAN: I think one of them also had an intellectual disability? 

>> ANN DENTON: Yes. It is about the original case applied for people with psychiatric disabilities. 

So these are our rights, too. 

Tenants participate in community activities and receive community services. Natural supports are encouraged. Nothing to argue with there. Right? 

One measure of integration is physical, who are your neighbors. Another measure of integration, really, is who controls the unit. And that's a whole different -- that's where the rights of tenancy come in. 

There are researchers all over the country who are Samhsa would never publish this if there wasn't research that didn't underpin all this. There are researchers across the country trying to run around saying is it more important to have choice or more important to have decent safe and affordable. More important to have rights of tenancy? Can you skimp on one of these things and still get the outcomes for people? 

And one of the things that they think they are finding is that rights of tenancy, rights of tenancy is a game changer. Rights of tenancy is a powerful thing. If I am a legal tenant, you cannot evict me for not taking my medication. You cannot evict me for having my boyfriend spend the night. You cannot evict me for having beer in my refrigerator. Can't do it. Those are not violations -- now if my boyfriend spends the night for ever and ever and never leaves, yes, that's a lease violation like we talked about. But those kinds of things, though, are exactly how historically people with psychiatric disabilities and substance abuse disorders lost their housing. 

I'm not going to go through a standard lease agreement because we beat that -- Amber we beat that into the ground yesterday. 

So access to housing, what the permanent supportive housing model does is that it says that housing is about housing. And disability is a different things. So it is about access to houses and should not be restricted -- if you think I need to cook and I need to balance my budget and I need to be able to take my own medication before I'm allowed to have housing, then you are not doing Permanent Supportive Housing. 

What we're saying is that housing is about housing. Services are about services. And well-meaning people will say to someone with a disability, well you need to be able to do these things before you can be in housing. It has what the researchers call face validity. You know what I mean by face validity. It seems to make sense but there is nothing to substantiate it. So it seems logical but it is not right. 

What I'm telling you is that on the behavioral health side the idea that a readiness screen predicts success at housing is not supported. 

So if I say to you, I'm going to pick on Mavis. I say, Mavis, she wants to live if her own place, right? She has some boyfriends that she might want to have come around. 

>> WOMAN: Boyfriends? 

>> WOMAN: Plural? 

>> ANN DENTON: Well, you know. 
(Laughter.) 

She doesn't really cook, she doesn't like to cook. No. Too much trouble. Yeah. She has had a horrible time balancing her checkbook. And she won't take her medication because the medication has side effects that she doesn't like. Or she will "forget" to take her medication. 

Let's say Mavis drinks a bit. Yeah. 

>> WOMAN: My kind of girl! 

>> ANN DENTON: Yeah, I know, my kind of girl, too. 

In a traditional sort of approach to housing, and I don't know how independent living centers approach it, but from the psychiatric disability side, a clinical approach might say, gosh, Mavis, you are really not going to be successful in housing unless you go to detox and go to treatment, and you need to take this assertiveness class so you can deal with all those boyfriends. Right? And you need to learn how to cook. 

Because doesn't that make sense? I know, it doesn't really make sense to this crowd because y'all are too radical. But there is an element of that that makes sense at least for the general public. 

What I am telling you is there is not one shred of evidence that making Mavis do those things is going to be predictive of her housing success. She might need to go to detox, but it is not -- that's not going to -- it doesn't up or down, it doesn't thumbs up or thumbs down in terms of where she is going to be in six months, it does not seem to predict that. So why have it? Why have a readiness screen? 

So where Permanent Supportive Housing is a model within are the behavioral health field comes from -- comes down, access to Permanent Supportive Housing should be guided only by the person's ability to meet the requirements of tenancy. And as you know, as you know, you should know, you do know, I'm looking over at Access Living, I know you know, that there is absolutely nothing to say -- people can meet the requirements of tenancy with assistance. Right? Cannon versus whoever, I don't remember who that was with. That famous case against HUD housing that said, a person needed I think an attendant or something like that to live in the housing so they tried to say the person was incapable of independent living. The court case went against that. And ever since then there has been a standard that says, if you can meet the requirements of tenancy with or without assistance, you have the rights of tenancy. So there. 

(Laughter.) 
Okay. The other thing -- oh, was there a question? 

>> MAN: Maybe. So I'm thinking about -- thinking of about situations we run across where sometimes somebody wants to leave a facility and we agree that they are going to accomplish certain tasks and they don't actually accomplish them. So we have to sometimes start to think about to what extent do I want this outcome more than the person does? Or to what extent am I going to be doing it or are they going to be doing it independently? 

So I guess what I'm thinking is that that sort of works out in this process as well, 

>> ANN DENTON: Yes. 

>> MAN: And yet you just threw me for a loop when you started talking about supports, because I don't know sometimes how much support is enabling and how much support is something that the person needs, or they won't be successful. 

In other words, so give me some sense of how I think about that. 

>> ANN DENTON: Yes. And that's a very subjective -- that's the gray zone, but you know we live in the gray zone. We all live in the gray zone. There is nothing really that's Barack and white. -- black and white. 

What I would say from the mental health perspective, is that people have demonstrated something that they don't do well, we provide them with supports and services, and our first goal is to help them learn to do it well. 

Although, it is possible for people to never learn to take their medication in the community or never learn to cook, and be just fine. So the answer is, it is fuzzy. It is very fuzzy. 

I think that for us, sort of on the political side or on the radical agenda side, what has happened is for so many years people have told individuals with disabilities, with psychiatric and behavioral health disabilities as well as others with disabilities, you can't. And then it morphed to, you can't unless you'll do these things. 

What this Permanent Supportive Housing model is saying is that after 40 or 50 years of research about community mental health, this is what we know works, and what we know works throws out several old ideas.

>> WOMAN: Can I add something to that? 

>> ANN DENTON: Yeah, please. Help me out here. 

>> WOMAN: It is complicated and I think it is in the gray area. I know a lot of folks that come to the clubhouse are members of the packed program. For those of you who don't know, program of assertive community treatment. It is a model we started some years ago, highly structured where service provider will go to the person homes and administer meds and that stuff.

What it has done for some folks, it has helped bridge that space between coming out of the hospital and needing that extra support, but then it becomes what you are talking about is the enabling that person -- it becomes almost like a piece of the institution that's reached into that person's life. The doctor for example in our community will tell people, you can't go do that because it is too much stress.

Well, people, all of us have too much stress. I mean it is just part of life. 

>> ANN DENTON: No, kidding! 

>> WOMAN: None of us learn our limits until sometimes we cross them and go whatever to the other side of stress, whatever that is. 

And it is scary I think for people in recovery from psychiatric illnesses that it is again I think we talked about this a couple days ago, that they begin to believe that they are not as well -- not well enough to do something. So by extending that institution into their homes, it is like even into their homes the doctor is coming. It is quite disturbing to me, but that's because I don't buy that. 

Anyway, just a comment, because I think that as you work with people with psychiatric illnesses, that PACT model is something to stay alert to. Is how that institutionalizing that model can be if it is not done carefully. 

>> ANN DENTON: Right. And consumers, people with psychiatric disabilities, and there is lots of back and forth about what the proper term is, clients, consumers, people with mental illness. There is a lot of push back against the assertive community treatment model what you are describing, because it is very prescriptive.

What this Permanent Supportive Housing says, is that individualized, voluntary recovery-focused and ongoing shoulder to shoulder partnership based services and supports are necessary for success. But notice those individualized, so you don't give people a service package. You don't get level of care number 4 package. Please sign here. You don't get that. You can. That's what the problem S you get that in our systems. You get a thing that you have to sign up for. You have to agree to it. You have to agree to assertive community treatment to get out of the hospital. 

This model says that that does not work. 

Recovery-focused means that just like we talked about for people who are coming out of nursing homes, if they have been there for a long time, they may have stopped believing in their own ability to be successful. Same thing. Same thing. Part of what we do is try to bring hope -- help and hope into these interactions. It is very different than a strictly-run assertive community treatment model. 

So, all right, that's it.

I was asked to talk about Permanent Supportive Housing and I went to what I know best which is Permanent Supportive Housing as defined by the federal government by SAMHSA. I know in is a broader definition. But when you hear people talking about Permanent Supportive Housing they may be talking about this. I think that was worth hearing. 

(Applause.)  
Questions? Questions? Objections? Yes, Ma'am? 

>> WOMAN: No objections, just a question. I wonder how the community of people with psychiatric disabilities view the supportive housing that's traditionally been called the halfway house for people with substance abuse disabilities. 

>> ANN DENTON: Right. This is actually extremely different from that. There is a real distinction on the mental health side -- first of all, halfway houses and group homes are way too expensive for our systems these days. So philosophies or values aside, they are declining in number. 

Halfway houses and -- halfway houses and quarter way houses and that kind of thing are seen as transitional, residential treatment programs. Which is a totally different thing from housing. So it is about treatment. So if I'm in a halfway house, I'm there to learn -- I'm voluntarily there to learn a skill, theoretically voluntarily. I may be there because that's the only place I can get out of the hospital, but that's a different issue. 

But I'm there to learn a particular skill that I've agreed to. Or I'm there to give me a safe space in time to recover my psychiatric disability. There is some purpose for it and it is time limited. That's the difference. It is not in that world counting as housing. 

>> WOMAN: This is a topic near and dear to my heart. I think in the mental health world the parallel housing placement to nursing home is called residential care. They are basically -- I could spend -- I could take the rest of the day talking about the evils of room and boards. But they are essentially ways to warehouse people with psychiatric illnesses. And it is a social control. It is a form of social control, period. 

>> ANN DENTON: It is. 

>> WOMAN: Folks have no choices. They are allowed $30 a month spending money. They are usually out in the country so there is no access.

>> ANN DENTON: You can go to a 7/11 that is 2 miles away where you can get a hot dog for five bucks R. 

>> WOMAN: Exactly. I don't know if y'all, you may or may not have something like that here or in your other states, but they are the bane of our existence. 

>> ANN DENTON: If you are interested in that as a topic, the Kentucky protection and advocacy system, published a report about a year ago on what they call -- what are called personal care homes in their state. Which are -- I mean how many people here know Lagoona Hanna. Hello! This is the mental health version of it, although smaller, but no less impressive. 

There was another hand at this same table. 

Questions? Comments? Yes, sir? And then I'm going to the other side of the room. 

>> MAN: So how do we get people hooked up with the right kinds of supports? I'm thinking of a couple people that are associated with our center now who want to be more independently living if homes of 10 to 12 people. They don't like it. The problem is that some of the delusional behaviors and some of the sort of personality issues that they have make it very difficult. What they need is supports from people who do understand and can help. 

Help me help them. 

>> ANN DENTON: It is going to be different in every state. But I will tell you, I'm from Texas, we are number 50 per capita funding for mental health services, so we're not doing good. But even in my state, there are service packages that if you get into the right level of service, you should have access to intensive case management. "Should" being the operative word. 

What you need is someone to provide services and supports that are fairly intensive. 

The other thing you might need is to live by yourself. If I have objectionable, delusional behaviors, or if I start talking to my hallucinations in the middle of this room and you turn to somebody -- I have visual perception and I turn to someone who is not there, that may disturb you. If I am in a group home, that may disturb you.

But if I'm towing that in -- doing that in the privacy of my own living room, unless there is a functional impairment to that which means I can't function because of it, who cares? I mean I'm being light hearted about it. But the truth is psychiatric symptoms in and of themselves just because I hear voices -- I was a young, young case manager in the behavioral health system in Texas, and I had had clinical training. I thought I was a clinician. This is my transformational story. 

(Laughter.) 
And I went -- and I started to work for the program called the fair way to lodge program which is a very old fashioned program. You worked for that? 
(Laughter.) 

And I helped groups of people transition out of the state hospital and do janitorial services. Really old-fashioned. We wouldn't be doing that today because that's demeaning and blah blah blah, whatever. 

But I can remember going my first couple of months on the job to a house where one of the janitorial crews lived, and there was this guy sitting on the back porch. He was sitting on the back porch and he was -- he was not happy, and he was yelling and some of the words he was yelling were obscenities, and he was pushing his fists up like this. And he was clearly talking to someone who is not there. Mad. He was mad. 

I thought to myself, my clinician went, oh, what is this guy doing out of the hospital. Right? And I stood there and somebody came up to him, put their hands on his shoulder and said, Willie, it is time to go to work. And he got up and he went to work. Not only did he go to work, he was the crew chief for the floor crew. 

When he got to work, he may still have been hearing those voices, but he ran the buffer just fine and he was able to tell people where to sweep. For me, that was a transformational moment. People with psychiatric disabilities can do just fine. And that coupled with the knowledge that we have about people getting better just makes what we do to people with psychiatric disabilities in our systems even more wrong. 
And Darrell and Tim are frowning at me now. I'm not sure you expected to get the radical manifesto, and I will blame the Access Living people for getting me fired up. But I just -- I was asked to talk about Permanent Supportive Housing, I went where I know which is Permanent Supportive Housing which is defined by the substance abuse mental health service -- mental services administration. I hope I have disturbed your lunch. Thank you very much. 

(Applause.)