MIKE BACHHUBER: We, what we kind of thought about here was, I know there's some people in this room who have some real experience with working with mental health systems in your state.
And we, we put together some materials for this.
And I think, you know, it might be helpful at some point, but I'm going to ask you, what's going, what do you have to do in your state to work with the mental health system?
If you've got someone who is engaged with mental health system, what does that look like in your state?
Is that different than if they're connected with any other kind of services stuff?
And if so, how is it different?
Oh oh, too big of a question for after lunch?
Boston will get us going.
AUDIENCE MEMBER: I'm not sure how much of a promise I can make there.
It's interesting because I think human service field largely construed, the kind of holy grail for working with someone with a mental health disability is get them to DMH, get them DMH services.
And it's this frequent lament is, 
MIKE BACHHUBER: DMH is?
AUDIENCE MEMBER: Department of Mental Health, and the frequent lament is, it's almost impossible to get DMH services, because it's limited state budget, pretty big state budget but limited, and people say, you have to have been committed in order to get DMH services.
So A, if you want those services, there are a lot of hoops that you may not need to jump through for your own sake that are involved in getting them.
But I think there's also kind of a lack of imagination.
We know a lot of people aren't getting DMH services.
We know a lot of people don't want DMH services, but I feel like in Massachusetts, and I don't know if this is unique to us, there's lack of imagination in thinking what else you can do for someone.
Because the mental health system is almost synonymous with DMH.
MIKE BACHHUBER: It's not unique to you in Massachusetts.
AUDIENCE MEMBER: I don't know if that's better or worse.
MIKE BACHHUBER: So sometimes, I wrote on a note, commitment to get services.
That's something that I've seen in Wisconsin and I know I've talked to other people around the country who have talked about that same phenomenon.
Sometimes if you feel like you need services, the only way to get them is to go into the hospital, presenting symptoms of very much sickness so that you can get your services, and it's a horrible situation to put someone into, but it's realistic.
Anything else that, that you've all experienced in your states when you're dealing with mental health consumers?
AUDIENCE MEMBER: Here in Maryland, you can get whatever you want to, provided you're willing and able to pay for it.
I think that's something that's being overlooked here.
If you have resources, you can get the finest care available.
We have Johns Hopkins right here, Sheppard Pratt right here in Baltimore.
If you're a Medicaid consumer, then it is a different story.
Then you're working with an overtaxed, overburdened system, where sometimes, yeah, if you have had a hospitalization, then you will get a certain number of visits per year.
But social class and economic opportunity plays a big role in how people get treated.
Definitely here in Maryland and I guess pretty much everywhere else too.
MIKE BACHHUBER: And so I assume we're talking here, this first area of mental health system, which is psychiatrists, psychologists, counselors, nurses, it might include housing, or other services that get attached to those, to that medical part of the system.
Is that correct?
And I assume that's what you're talking about in Boston as well.
Any other things that you've all found?
Kenny?
Can you use the microphone, please?
AUDIENCE MEMBER: Okay.
Now, primary care doctors that provide mental health service sometimes.
MIKE BACHHUBER: Primary care doctors can provide, and a lot of that gets down to licensing rules of each state.
In Wisconsin, anyone with a medical doctor license can pretty much do anything a psychiatrist can do.
And I suspect that that's more the rule than not the rule, but every state has the right to have its own licensing laws and tell what different people with different training and backgrounds can do.
That's something, though, that I think we're seeing more of, that they're encouraging mental health in primary care settings, so in community health centers trying to provide mental health services through community health centers, and again, that sometimes is just putting some counselors in the community health center while the primary physician might prescribe psyche drugs, would be a very common model.
Kind of to expand the idea of what the mental health system means.
Some of the newer things, we're seeing certified peer specialist programs grow up all across the country.
I think most states have them now, probably about 30 some states.
That leads, the problems that we have with that are some of the kinds of things that Dan was talking about.
Sometimes it's seen as part of the mental health system, and so they're not really allowed a peer to peer relationship, and instead have to monitor medication or do other things that other parts of medical system do.
Other times, you still have the issues of peers as providers versus peers as someone who is on the same base as you are.
AUDIENCE MEMBER: I have a question about that.
Are the peer specialists' programs housed in the state, in most states?
Or do they provide contracts so that nonprofit or nongovernment agencies could provide peer support services?
MIKE BACHHUBER: It's done differently from state to state.
AUDIENCE MEMBER: I mean there is the flexibility to do that.
MIKE BACHHUBER: I think both models are followed but, more the second model, where private entities provide it.
DANIEL FISHER: Thirty-eight states, I think, where peers can be designated as a billable person, as a provider.
They do designate that there needs to be generally supervision by a mental health professional, although there are two states, Pennsylvania and Arizona, that say that peers can supervise peers, and there are several states also where consumer run organizations provide Medicaid billable services.
I know Ohio is one of those.
In order to make Medicaid, and I think we'll go into this more tomorrow, Medicaid a peer friendly reimbursement system, really need to look at what the scope of services allowable under Medicaid are, because right now, Medicaid is a pretty medical, medically oriented system, and requires pretty traditional diagnoses and treatment planning, and doesn't really, there's only one state, and that's Michigan, that has expanded medical necessity, for instance, to include recovery and community integration.
And medical necessity is an important criteria for reimbursement because that really defines the scope of services that will be reimbursable under Medicaid, so it's not enough to just have a peer be Medicaid reimbursable, you need also expand what can the peer do who is reimbursable?
Who is the supervisor who is supervising the peer?
So it, we've talked with, as advocates, we've talked with the federal Medicaid agency about this and they said it's up to the states, that the federal Medicaid does not specify, you know, exactly who the supervisor would be or exactly what medical access will be, or what the scope of services will be.
So if the state says, oh, it's the federal government telling us what to do, it's not true.
AUDIENCE MEMBER: Okay, that's what I wanted to know.
DANIEL FISHER: It is state determined.
That is really what Mike is driving at.
You go to your state, Medicaid agency, along with other advocates, I would recommend, and try to expand what a peer is allowed to do.
AUDIENCE MEMBER: Also, do you have any experience with centers for independent living using, or being able to use SAMSA funds, I mean block grant funds to do any of the work you all do?
MIKE BACHHUBER: At least a couple of the centers in Wisconsin use block grant funds, I'm seeing Sarah nod her head.
Do you do that at your center?
AUDIENCE MEMBER: We don't, part of the SAMHSA, you need to have at least 51% of your board of directors have some sort of mental health issue or in recovery, so gearing towards that, when looking at the makeup of your board is an important thing, if that's something that you're trying to seek.
MIKE BACHHUBER: There's sometimes other sources of funding, for instance, in Wisconsin, counties provide a lot of funds for mental health services, and they have different sets of rules than feds or states.
Alaska, they have what they call the Alaska permanent fund, which has funds for mental health services.
California has a special fund for mental health services, so a lot of this stuff is going to be different depending upon what state you're in.
AUDIENCE MEMBER: Mike can you say what SAMHSA is for folks who don't know.
MIKE BACHHUBER: Good idea, thank you.
SAMHSA is a federal agency.
Part of the Department of Health and Human Services.
It stands for Substance Abuse and Mental Health Services Administration.
And one of the programs that they administer is the state community mental health block grant fund, so every state in the country gets a big chunk of money, millions of dollars a year, to fund community mental health services through SAMHSA.
Psychiatric assistance of one sort or another are very common as part of the mental health system and then there's a whole kind of miscellaneous category that you can see, and oftentimes, centers are involved in some kinds of peer-run services, including peer support, helping people with wellness recovery and action plans, there can be a whole variety.
ECPR could fit within that category.
Then one of the common issues that we see from state to state is, you get in the inner city, and you have, whoa.
Okay.
I keep hitting buttons accidentally.
And in rural areas oftentimes access to traditional psychiatric services, is harder to get at.
Sarah, did you have something you wanted to add?
SARAH LAUNDERVILLLE: I had a thought in terms of like where we intersect around this system, and especially with centers for independent living and the youth transition work that needs to happen.
Schools are really good place to really interact around this, because oftentimes in elementary and middle and high school we find that folks are starting to interact with the mental health system and the more we're engaged in that process, might you know, keep, have young people kind of coming our way as opposed to the more traditional systems, and the other system is police Emergency Room hospitalization, like engaging with our Police Departments as well.
DANIEL FISHER: By the way, another area that I think is underdeveloped and I heard some of the CILs saying they're reluctant to provide too much in the way of PCA, personal care assistant services, but at least in Oregon, there's been a fairly widespread use of PCAs for mental health.
So the state regulatory agency may say, oh, no, they don't have activities of daily living needs, you know, being clothed or getting feeding or these various activities of daily living, but in fact, instrumental activities of daily living also qualify as a reimbursable service for personal care assistance, and there is a manual that the state of Oregon has developed for the use of mostly peers, as personal care assistants, in mental health.
So if you like, I can make that available to people.
Through Medicaid, yes.
Excuse me, through Medicaid.
Medicaid, the first step is, they'll say no.
They'll say, it doesn't fit activities of daily living, you know, that usual formula, but there's, activities of daily living, IADL, which if, if you wonder what they are, contact a occupational therapist and they'll recite them in their sleep, so it's just not well known to the mental health world or to a lot of the independent living world.
I see Sarah is smiling, raising her hand.
You know about this?
SARAH LAUNDERVILLE: I would expand, when I, after some of my hospitalizations, I would sort of moved to group home setting and Blue Cross Blue Shield, they paid, they saw it would be better for them if I was not within those systems anymore.
They paid for my apartment, they paid for support services for me, food, for a good long time, like six months while I was learning some of those independent living skills, so pushing those systems are really important, and it's, and I think it's often not really well known.
I think in Vermont we had some good success around the Medicaid connection to that.
AUDIENCE MEMBER: I wanted to ask, isn't that a federal regulation, but each state determines who is going to be eligible and so in Virginia, you have to have the ADLs.
At least two.
To receive personal care through the waiver services and they don't even have it in state plan services.
DANIEL FISHER: What the state will say is that federally, we can't serve, if there's not an ADL requirement.
AUDIENCE MEMBER: No, Virginia will say, we're Virginia, we'll do it our way.
DANIEL FISHER: You will do it your way.
That's good, because if you go to the federal employees, they'll say, no, no, no, it's up to each state to decide.
MIKE BACHHUBER: So, yeah Basically, we're starting to talk about details of Medicaid, and I think that's going to be really important as we think, if centers are interested in providing mental health services, and the bottom line is, you have to meet all the federal requirements, and then states can do their own thing within the federal requirements and so the services available under Medicaid are completely different from one state to another to another to another.
But these are issues that come up within that broader context.
Okay.
So I put up here some of the common, as well as some of the controversial treatments or services that are provided within the mental health system.
And so one of the things I just wanted to highlight is that in many states, oftentimes electroconvulsive therapy, or ECT, is one of the services available, and oftentimes in some states it can be court ordered.
ECT is electroshock, and it's a, it's a therapy that the Federal Drug Administration has had a panel look at to decide whether it's actually safe and effective.
And that panel recommended that it should not be allowed, but the FDA has never acted on that recommendation, and you know, so, so that's, that's part of the difficulty in this system.
On the other hand, there are some people who I know have had ECT and said it saved their lives, so you know, in mental health, we deal with that a lot.
You have things that are offered as treatments that does not have a good evidentiary base behind it, but it has worked for some people, and so that anecdotal support is used to keep it available, and sometimes even to allow courts to order it despite whatever problems it offers.
So, and I also wanted to highlight that peer support is something that there's an increasing evidentiary basis to show that it is both a safe and effective service to help people with psychiatric labels.
DANIEL FISHER: If you go to the National Empowerment website, power2U.org, power, the number U, letter, number two, letter U.org, power2U, you'll see that we have evidence, papers that give evidence of the efficacy of peer support and it is deemed a evidence-based practice by SAMHSA, so if you're in a state saying, well, we don't know if there's sufficient evidence, you can you know, make your advocacy argument by getting some of these papers, it is shown to reduce hospitalization, to increase satisfaction, a number of different criteria, and we talk a little bit later about peer run crisis respite, that also is an area that is showing increasing evidence.
In fact when will we talk about that?
Power two you.org, that's it right there.
National Empowerment Center.
MIKE BACHHUBER: I'll leave it up here.
I'm not sure you can read it in the back.
If not, it will be available for you to check out.
Now we're starting to get into the Medicare, Medicaid.
On the federal level, there was a mental health parity law passed five years ago, roughly?
2008?
That basically says that if a health plan offers any kind of mental health benefits, it has to provide them on comparable basis to other benefits that it provides.
I mention that because this access to services issue has come up over and over and over again, and someone mentioned the paying for services.
Most people pay for their health services through a health insurance plan or some kind of health plan, and if you can get your services that way, that mental health parity law should be helping folks around the country access those kinds of services.
Wisconsin and some other states have their own parity laws that provide broader protection.
Move on with that.
So the public mental health system.
I was talking in, you know, up to now about broadly what's available for anyone.
Every state in the country also has what they call public mental health systems, basically for people who can't afford services through the private system or people who may not want services either through the private system or any other way but a court or some other state entity requires them to use.
Most states still have state hospitals.
In the history, we learned that those were mostly developed in last half of the 19th century, and sometimes a lot has changed since then.
Sometimes not as much as we might like to believe has changed since then.
Is there anything else we should be saying about the public mental health?
DANIEL FISHER: Have people heard of the IMD exclusion?
Anybody heard about that?
It's a very important specific regulation under Medicaid.
And it's worth paying attention to because it was, it was set up, IMD, stands for Institute of Mental Disease, couldn't think of a worst title, but that's what they were calling psychiatric hospitals in the 60s, when Medicaid was originally passed.
And Medicaid federally did not want to fund state hospitals because they felt that that was a state function.
So they said there would be no Medicaid funding for any psychiatric hospital that had 16 or more, had more than 16 consumers or patients of whom 50% or more were psychiatric patients.
Now, this is very important, because it applies to nursing homes as well.
So you theoretically cannot have a nursing home that has more than 50% people with psychiatric diagnosises as their primary diagnosis.
And however, there are many nursing homes that do have at least that many.
Because when they closed down state hospitals, a lot of the patients were just transferred to nursing homes.
So recently, there's been, there was legislation that was proposed last year called the Murphy Legislation by Congress, and one of the proposals under that legislation was to eliminate the IMD exclusion, if the IMD exclusion was eliminated, that means Medicaid funding would occur for state hospitals and for private hospitals as well.
Right now, Medicaid will not fund private hospital that is, that is not attached to a hospital itself unless there's a, a managed care plan which basically puts a limit on the amount of money that would be spent.
Like in Massachusetts, there is funding of private hospitals by Medicaid but it's all under a global budget.
So the disincentive to hospitalize, not incentive.
The worry is, that without this kind of global budgeting that eliminating the IMD exclusion would mean that there would be reinstitutionalization, wholesale of people.
And I'm sorry to burden you all with it, but it also means, it's also the reason that money follows the person does not work in mental health, because money follows the person, you're familiar with money follows the person legislation?
Do you notice that it doesn't work in mental health?
Have you ever noticed that?
People with mental health diagnosis don't get funded.
Sarah knows that.
Right?
Do you know why they don't get funded?
Because the IMD exclusion.
Money follows the person only if the money would otherwise be spent in an institution who is under Medicaid but because the IMD exclusion, people with psychiatric disabilities would not be funded in an institution so there's no money to follow them into the community.
And that's, so that's another sort of discriminatory piece, a factor of legislation.
Is there any questions about IMD exclusion?
I'm sorry to bring it up, but it's become a huge national issue now.
No.
No questions about it.
MIKE BACHHUBER: Someone mentioned waivers, before I think you mentioned the waiver in Virginia.
Waivers are a way of funding community services but waivers in general don't apply in, to folks who only have psychiatric disabilities, because of the issue that Dan was talking about.
DANIEL FISHER: They have to be, like a very comprehensive waiver, either a 1115 waiver, which is statewide, or 1915I.
There are very few specific waivers broad enough to encompass, you have your hand on the microphone.
AUDIENCE MEMBER: Right.
If you're in a nursing home in, and your primary diagnosis is mental health, I guess you could use MFP if you qualified for the long-term care waiver in the community because that's one of the caveats of the MFP.
That's one of the services that you're going to go into, having personal care.
And if you don't have the ADL needs, then you're not going to qualify for the waiver, thus you're not going to be able 
DANIEL FISHER: You need both.
To get people out of a nursing home into the community.
AUDIENCE MEMBER: Right.
DANIEL FISHER: Even with Olmstead, it's hard in mental health to do that.
It's very difficult.
MIKE BACHHUBER: That's a big issue, because the nursing homes, the nursing home certifies that they meet the level of care for Medicaid, that they have the functional limitations.
Most of the community programs, the state or some other public entity certifies that you meet the level of care and so often time, even though the standard is theoretically the same, it's applied very differently, so someone gets stuck in a nursing home because the nursing home certified that they met the standard.
But then when they try to get community services, the state determines they don't meet the standard.
And they end up being stuck there.
AUDIENCE MEMBER: Supported employment and independent living that has people living in the community and working, are, are those funds available through Medicaid?
Are funds available through Medicaid for those kinds of supports that might be offered through an independent living center?
MIKE BACHHUBER: Well, sometimes they're offered through an independent living center.
If those kinds of services are funded under Medicaid, they're funded under the kinds of programs we're talking about right now.
Home and community-based services waivers, money follows the person, similar programs.
And usually when they're funded by Medicaid, they're longer term in nature, so sometimes people can get supports, employment related supports on a short term through a vocational rehabilitation program.
But if it's longer term, it's usually through some kind of Medicaid funded supports, and that's where you run into the eligibility issues for people with psychiatric disabilities.
DANIEL FISHER: It's difficult to get supported employment, I know Justin you were part of that program, that was I think DMH funded for support employment.
Medicaid, I don't think is easy to get funding for support employment, which it should, though, but yours was DMH funded, right, Justin?
JUSTIN BROWN: I think we can talk a little bit more about this tomorrow, but the, essential challenges I see at least in Massachusetts is that all these services get bundled into one mental health system, and in our state it's called community-based flexible supports, and what used to be as consumers, we could choose, I'd like this service and it's independently funded or that service independently funded.
Today all I get is one choice.
Either I go with the monopoly or I don't get any services at all, everything from housing to employment to, you know, just basically ADLs is all bundled.
And as a part of an independent living program, we've been exploring, we'll talk a little more about this tomorrow, with more independent billing to Medicaid.
But that comes with its own challenges.
And you know, basically we've been losing money trying to implement a model like that.
But that doesn't mean that in the future what we're exploring now is some cost reimbursement and some billing by the, you know, 15 minute increment, but 15 minute increments are not necessarily the solution.
AUDIENCE MEMBER: Is your community, that you're, your home community base waiver connected with developmental disability, intellectual developmental disability?
Do you only have one waiver that covers both populations, or all populations?
JUSTIN BROWN: I'm not as familiar with the developmental disabilities.
I'm sorry.
MIKE BACHHUBER: Usually waivers are written by a state to, to deal with a specific group based on the type of institutional care, so in order for a state to get a community-based services waiver and now we're kind of getting into our, I'll talk to you about that later, instead of explaining it here.
But oftentimes, DD folks are in one folks and physical disability and elderly are in another because of the different kinds of institutions that usually serve them.
AUDIENCE MEMBER: I wanted to partially answer that, although if we're moving on, maybe I shouldn't.
But I mean, Massachusetts has what, 11 waivers at this point, so we have residential supports, nonresidential supports, specifically DD waivers, specifically autism only waivers.
Our MFP waivers cover people with a wide range of disabilities, as well as elders.
So it's not only, it's sort of mixture of diagnostic category current setting and needs going forward.
And it's an arcane and ridiculous system, but when it works, man does it work.
My life is our waivers right now.
MIKE BACHHUBER: Okay.
Kenny has his hand up.
We'll take that and move on.
AUDIENCE MEMBER: Okay.
We've been talking a lot about Massachusetts in the past half hour or so, and biggest thing I know about Massachusetts Rotenburg Center, where a lot of people actually outside of Massachusetts come in, and how do you think independent living centers and other sources, are going to deal with?
Eventually people are going to leave and they're going to have to transition in the community?
They're going to have a lot of people, I mean there have been videos showing people have had traumatic experiences, many of them are going to have trouble integrating into the community and in fact make some of the symptoms and, what it does is worse than the shock therapy all sorts of symptoms and it literally impacts.
From what I have seen in the video and it seems to be I mean, nonhistorical behavior and kind of increasing that, and sort of make people more limited.
I mean, I don't know everything but from what I've seen, but how is it, how does Massachusetts handle some of the people from the center?
I mean, independent living center, how would, like New York, New York City has a lot of people, a big need for collaboration between the two.
MIKE BACHHUBER: Let me make sure that everyone understood, you were asking about what, how does Massachusetts deal with the people from the Judge Rottenburg Center?
AUDIENCE MEMBER: Addressing their needs once they are released.
Very significant.
I think a lot of institutions have that, specific, that's just one example of what goes on.
Worst parts of institutions.
MIKE BACHHUBER: And I don't know what the answer to that is.
The Judge Rotenburg Center I believe is a developmental disability center that does some very bad things but maybe Dan or 
DANIEL FISHER: Maybe, I've been working for years to try to close that place down.
It's terrible.
It's the center that gives shocks, sometimes 5,000 shocks a day.
Supposedly they're not supposed to give it to new clients there.
But there's no oversight, still no oversight.
They have tremendous clout, I guess, through the parents 
AUDIENCE MEMBER: Yeah, the Judge Rotenburg Center is actually in our service area.
And it will not surprise you to learn that we have not been able to get a foot hold in there.
And the question of what do people plan to do with folks who are released from JRC is mostly answered by the fact that people aren't released from JRC.
That said, we have worked with some people who have been institutionalized there and managed to get out.
Unfortunately without our help.
And it's more or less working with people who had whatever issues they had going in, plus a multi-year trauma history, on top of it.
So it's not a very good answer but it's the answer we have.
MIKE BACHHUBER: So this is issues that we already discussed.
SAMHSA, we talked about before.
It's in your packet.
If you didn't get a note down.
And generally, the fact that there are federal agencies that are involved with mental health, but in general, most of the decisions are made at the state level.
The, I mentioned the community mental health block grant before.
I'm underlining it here because there's a lot of money, millions of dollars that goes to every state.
States have a huge amount of flexibility in how they can use that money.
And in many states, it's used to fund peer services, peer-run services.
Centers could certainly be providers under the mental health block grant, and so it's something that if your center is interested in doing more for mental health services, you need to know more about how that is used in your state.
And I can give you information on how to find out more about that, if you're interested.
Each state has to do a one to three year plan for a community mental health services that guides how those funds are spent.
The plan includes indicators to assess the state's progress.
They have to file an annual report on how the funds are used.
And they have to have a Mental Health Planning and Advisory Council that includes people with lived experience to advise the state on how they're going to use the funds.
Most states also provide state funds for mental health services.
I think we've mostly talked about how people get in already.
So in addition to the standards, or the standards for involuntary treatment are generally being incompetent or a court finding of incompetence.
A court finding of mental illness and dangerousness.
Some states also allow if gravely disabled.
What that usually means is that someone's judgment is so poor they can't make their own, take care of themselves, but it's all done based on a psychiatrist or a psychologist saying, Dan is incompetent, he's unable to make his own decisions, and usually there's a court involved but courts usually rely heavily on me as the expert telling them something, and as Dan suggested, if the consumer doesn't have someone who can testify that that's not true, that's usually the end of the process.
DANIEL FISHER: Not just someone.
The psychiatrist.
MIKE BACHHUBER: Someone with credentials, with the right credentials.
We've talked about peer-run services.
For, want to identify there's greatest emphasis on self-determination, recovery, community inclusion and peer support.
These are some of the themes of recovery, self-determination and self-directed care, community inclusion, advanced directives to guide your care, and integrating mental health with primary care, which was also identified.
And that, I think, gets us into the peer run respite center.
DANIEL FISHER: Are people familiar with the peer run respite?
Heard of that?
Anybody raise your hand if you've heard of peer run respite.
It's about half you all, I guess.
There are about 16 in the country right now concentrated in the eastern part of the country, although Georgia has five now, because of court order, actually, and by the way, sometimes most significant way to change a system is by court order through the Department of Justice.
So peer run respite, the idea really is a lot of people who are hospitalized really don't need a locked facility.
And especially if they can be reached before a crisis has gotten to such a point that their level of danger is too great.
I think independent living centers could in many cases sponsor a peer run respite, and there's every reason to believe that they're superior to hospitalization.
First of all, they're voluntary, not involuntary.
And although you can be on a voluntary, involuntary or a conditional voluntary in a hospital, you're always on an involuntary.
Because it's always up to the staff.
And if they don't want you to leave, it's involuntary.
So there's probably, I mean, for a few people who feel okay about being in a hospital, that's fine, but for many people, it's very traumatic.
So it avoids the trauma.
There's continuity of care, because if you are in a respite, it is a small home like setting.
Usually, I'll show you a picture here.
This is in Nebraska.
This is one called Keya House.
It opened in 2009.
As of 2011, they had 170 different people had come.
And this is just their number of referrals, and they, peers run it from top to bottom, so there's some of these by the way, are peer run.
Some are peer operated.
Peer operated means it's under an agency, not necessarily run by peers.
Maybe could be an independent living center, although I don't know of any at this point.
Could be under a training center, like in western Mass.
It could be under a Mental Health Association.
It could be under a provider of mental health services like in Maine.
But most of the peer respites are actually run by peers.
And are open usually seven days a week, and overnight service is very important.
So here's a picture of one, the one in Nebraska, and it's I believe has four bedrooms.
To sell the idea, it's very important that you be able, be prepared and that you be honest about what they're able to provide.
And you can get, again, actually from our website or from this Keya House website or from a, Steve Miccio, who has developed several in New York state, Rose House there, you can take people for visits to some of the existing ones.
We did that in Massachusetts.
I'll just tell you, taking our deputy commissioner up to Stepping Stones in New Hampshire was a very important selling point.
The deputy commissioner was skeptical, you know, is this really going to work?
But went up there and had testimony from people who had been served in that respite, and we even did a role play for the deputy commissioner, and it was based on some real-life circumstance, person was very agitated because they weren't able to get a battery for their tape recorder, and it might have been considered a psychiatric symptom in one setting, but in the Stepping Stones, it was addressed as let's get a battery.
AUDIENCE MEMBER: Deputy commissioner of what commission?
DANIEL FISHER: Whats that?
AUDIENCE MEMBER: Deputy commissioner of what commission?
DANIEL FISHER: Oh, of mental health.
Deputy commissioner of mental health.
She was a hard-biten, very tough, had a history working in the criminal justice system and she's like, oh, change this they can really, you know, manage people that are really, you know, disturbed.
But they, went up, and interviewed some of the people that had been there, and they were, she was convinced they would have otherwise be in the hospital.
The cost, by the way, is 1/3 of the cost of psychiatric hospitalization, at least.
If you add in the police and you add in ambulances and all the other, you know, personnel that are involved in a psychiatric commitment, it's even, ambulances are expensive these days.
They're over a thousand dollars right there.
Emergency Room services.
You just walk in an Emergency Room it's a thousand dollars.
So the other thing is satisfaction is higher.
The, and the results are very good.
It's shown that people don't need to be rehospitalized nearly at the same rate.
And just the idea of hope, that you walk in and the first thing you're confronted with is somebody saying, I've been there myself, I've been through it, I got through it and you can get through it, gives a lot of confidence to people.
People often have to be sort of deprogrammed though from the idea that they're going to be immediately shoved into services there, and that the idea on the other hand, that they can actually construct what their day will look like is a novel idea to people.
Were there any questions about peer run respite?
AUDIENCE MEMBER: Is this when people are coming out of an institution?
Are these people that are transitioning out of an institution or how, on what basis?
DANIEL FISHER: Some cases, but primarily it's to prevent people from going into institutions.
AUDIENCE MEMBER: Okay.
DANIEL FISHER: How do they find out about it?
A lot is word of mouth.
But also referrals from community mental health centers, somebody is very distressed and upset and they think they might have to go to a hospital.
The longer a center has been around, like Stepping Stones has been there 20 years, they have two beds, you know, available for people overnight, and Stepping Stones and also a place called Rose House have an overall sort of, you know, people drop in during the day, they can have warm lines to call on the weekends and respite.
They fulfill all that's missing from community mental health, which is almost, you know, all the day and, or evening and weekends.
Yeah.
AUDIENCE MEMBER: So, do these places, I know they're peer, but if someone goes into one of them, you know, if someone comes to a center and center recommends, like, you know, I know that you feel like you might have to go into the hospital, would you consider the peer respite, if they get there and the situation escalates or changes in some way, are there people on staff who have any sort of medical training or are equipped to do that?
Then what happens?
Like if a situation would unfortunately escalate.
DANIEL FISHER: They have in most cases a cooperative arrangement with an Emergency Room or with a crisis team.
But a lot, and most situations, the staff are trained in peer support and emotional CPR and are able to more adequately decrease the intensity of someone's emotional distress, than medical personnel would.
By the way, I had psychiatric training, psychiatrists are very rarely trained to help people through a psychiatric crisis.
They generally rely on medication.
And not on interpersonal skills, so these, the people working in peer-run respites have more experience and more training in helping people through an emotional crisis than medical personnel actually do.
AUDIENCE MEMBER: Okay.
DANIEL FISHER: They also have access to a psychiatrist.
They have access to their medication.
Because there is medication on site.
AUDIENCE MEMBER: Okay.
That's more or less what I was asking, is, if someone went into this respite DANIEL FISHER: Can they still see a psychiatrist?
AUDIENCE MEMBER: Were the people in the respite unable to help the person through peer support, through emotional CPR?
DANIEL FISHER: Call on a crisis, if there is a crisis team, or if they have to, somebody go to the Emergency Room.
The Rose House is very interesting example that Steve Miccio does, and it's in New York state, in Ulster county and he's worked out an arrangement with the Emergency Room, if somebody goes to the Emergency Room and they're having a psychiatric crisis, they have peers in the Emergency Room who will interview somebody and provide them with a opportunity to reduce the intensity of their emotional distress, often better, I must say, than medical personnel, because when you have been there yourself, you're not as frightened about being with somebody who is in emotional distress.
Also they then offer the option right in the Emergency Room, do you want to go to the respite or do you want to go to the hospital?
AUDIENCE MEMBER: Okay, so that is an option.
DANIEL FISHER: That's an option, yeah, yeah.
And I think we need to have more peers working, actually, in emergency services.
Other questions?
AUDIENCE MEMBER: So if somebody is still on disability through Social Security, and they go in and out of a peer run respite, could they use that experience to back up the fact that they're still disabled?
DANIEL FISHER:  That's an interesting question.
AUDIENCE MEMBER: Hospitalization?
DANIEL FISHER: Probably wouldn't give them as much, what do you call it, credit as a hospitalization would, but I don't know if that's been tested.
I think, Pat, right?
What Pat is bringing up, in order to get recertified under Social Security, you have to show that you've had such a severity of condition that you would otherwise be hospitalized.
I don't know, there are about seven days on average in a peer run respite.
But since they're not a locked facility, they may not qualify as, you know, degree of severity.
MIKE BACHHUBER: Having done a number of Social Security cases over the years, even though there's not, I don't think there's a definite answer to your question, I would, I think you're right that 
DANIEL FISHER: Hospitalization probably.
MIKE BACHHUBER: If someone at the respite house would write you a letter about the crisis you were in, that would probably help your Social Security.
DANIEL FISHER: But may not be like a hospital.
I don't know.
Yet, maybe in the future.
AUDIENCE MEMBER: Dan, we're from Maui, and Maui currently is under a state hospital systems.
The general hospitals in our island is part of a state system funded by the state legislature.
And last year, because of a budget cut, they closed the psychiatric facility on the hospital for juveniles.
So now if there's a problem in Maui, they either have to be put in prison or flown to Honolulu.
Which is you know 
DANIEL FISHER: Big disruption in somebody's life.
Sounds like an excellent place to have a respite.
AUDIENCE MEMBER: That's what I was going to suggest.
How do you, how do you go about this?
DANIEL FISHER: Also, I can't say enough about Steve Miccio.
And I can connect anybody who wants to be connected with him, or with the materials they've produced.
They've produced manuals on how to set one up.
Right from soup to nuts.
Actually, they're on our website, come to think about it.
Peer run respite on the National Empowerment website.
If you are interested, we can talk further.
I spent about two years, hopefully it wouldn't take everybody two years, getting one in Massachusetts.
We just called, basically calling all advocates to my house, and we called ourselves the groundhogs, and, because we met on Groundhog Day and we still, when say crisis comes up, we still meet, like the state was defunding the recovery learning community, so we met again around that.
But for the respite, we just, we took all the decision makers that we could think of and covered them, the state legislature.
We repeatedly went and testified to them.
That scared the Department of Mental Health a little bit because they didn't want to be told they had to do it so we went to the department itself and said, here's how you could do it without being told to do it.
Gave talks to them.
Went to the newspaper, got articles into the newspaper.
Gave public talks just to the public and then said, if you like this idea, contact your legislator.
After two years the state finally relented, put out an RFP, which they actually asked us to write, because they had no idea what it was.
So they said, you want a peer run respite, we don't know what it is, it sounds like a good idea.
How would you write an RFP, request for proposal, how would you write it?
We wrote it up for them, and based on other peer-run respites.
And now they have funded one.
They were going to do six, then three, and now one.
Maybe Justin and Ruth and, Ruthie and others can, you know, we can advocate.
We've been waiting sort of for everything else to die down, but now, now that the dust has settled, maybe you can advocate for it.
But I'd be glad to give you all our slides, presentations.
Mostly it's passion.
If you have about three or four passionate people, Margaret Mead said it, you have three or four passionate people with a good idea, you can get something new accomplished.
And you look like you're passionate about it, so get two others.
MIKE BACHHUBER: We just got our legislature to approve three in Wisconsin.
DANIEL FISHER: In Wisconsin, yeah.
MIKE BACHHUBER: And it's, it starts with having a small group of people who understand what a peer respite is all about, so you do some research.
You find out what it's all about.
Hopefully you get a chance to see some in operation and then it goes pretty much as Dan was saying, you advocate with your legislature, and/or your administration to make it happen and you have to convince someone there who can make the right decision that this actually makes sense.
One of the biggest selling points is the cost.
As Dan was saying, locking someone up in a psyche hospital costs around a thousand dollars a day, give or take, depending on where you are, and so if you can get someone in a peer respite program at a cost of, you know, two or $300 a day, and it keeps someone out of the hospital, that's saving money for the state.
In your case, the cost of flying someone to Honolulu would be incredible, so you have, I think, a real good argument to make.
DANIEL FISHER: If you'd like to invite us out.
AUDIENCE MEMBER: And they wouldn't lose constitutional rights being in a peer run.
Somebody in the psyche hospital loses their constitutional rights, does that mean that somebody with a psyche diagnosis in general has lost their constitutional rights?
DANIEL FISHER: I know it's a little scary the way I put it.
I'm sorry to scare people about it.
I know Nassira is worried about my saying people lose their rights, how about I say their functional rights, their effective rights are removed with the diagnosis?
AUDIENCE MEMBER: For good, moving forward?
DANIEL FISHER: As long as you have that diagnosis.
The problem is, it's hard to have a diagnosis removed.
I tried to do that with a couple of people, who said they didn't need Social Security any longer and I have written a letter saying this person is no longer diagnosed but it takes a psychiatrist.
And not many psychiatrists will remove the diagnosis, or say the person is recovered.
In other words, recovered from the condition that they were diagnosed from.
But as long as it's in your record that you have a diagnosis especially considered a severe diagnosis, you are vulnerable to discrimination under the law.
And you shouldn't be.
The ADA should protect you.
It's like a special case.
When you're in a hospital, though, they have complete control over pretty much everything you do.
So you, there, your rights are even reduced further, and one other place that they're even worse than in a public hospital, Mike referred to it, is the military.
I was in the military, in a military hospital, Navy hospital, and you're ordered in.
There is no public hearing.
And you just wait for them to order you out.
That's basically it, in a, and I tried, I was on the White House commission for mental health and I tried to change that, and they said that's the Department of Defense, it can't be touched.
So, your life is not your own in any event if you're in the military.
AUDIENCE MEMBER: So 
AUDIENCE MEMBER: How would someone go about striking a balance?
How would someone strike the balance?
I mean DANIEL FISHER: Strike back?
AUDIENCE MEMBER: Strike a balance.
When you have a diagnosis of a psychiatric disability, you are at risk for this.
However, if you wish to access medical treatment, you also need to have a diagnosis.
If you don't have a diagnosis, you can't go to a therapist or to a psychiatrist to 
DANIEL FISHER: Can't get housing, can't get Social Security.
AUDIENCE MEMBER: You can't get the things you need to become more independent, you know, and seek what your choice for your life is, how do you strike that balance?
DANIEL FISHER: Here's my advice, is to have a social network.
That's your best protection is a social network.
Somebody who you can call.
Don't underestimate that.
And somebody of some standing doesn't hurt.
If you can have a psychiatrist that you can, they can contact, that's even better.
A friend of mine is an advocate in Cleveland, Ohio, says he carries my number in his wallet.
I can't give it out to everybody, but I said, why, David, do you do this?
He said if I get captured, you know, by the system, I'm going to have them call you and you're going say, I'm all right.
AUDIENCE MEMBER: Okay.
I was wondering because we were talking about labels early on and it's the same thing, or similar thing.
I mean, there's definitely a negative side to having a label.
But also having a label gives you access and the ability to communicate with other people.
And I was wondering what your balance, your balance strike point was for that 
DANIEL FISHER: Have friends.
Friends, that's it.
Friends and advocates.
It's who you know, yeah.
MIKE BACHHUBER: I think that was actually a good issue.
We have a break on the agenda, and after the break, we have a giant period for discussion.
AUDIENCE MEMBER: I want to ask a question and go back to this respite house.
You know, you showed me a picture.
And so I'm wondering 
MIKE BACHHUBER: Can you hold the mic closer to your mouth?
AUDIENCE MEMBER: I'm wondering if your model and your training includes capacity to serve all people, people with sensory and physical disabilities?
Is the ramp on the back of this house, or you're not able to serve people with physical disabilities?
MIKE BACHHUBER: Pictures are very imperfect.
What can we say?
We didn't cover the ramps in the pictures.
No, you're right, that that's an issue, and frankly, I think that's an issue for mental health services in general.
A lot of times they don't take accessibility into account, and exclude a lot of folks who are eligible for the services 
AUDIENCE MEMBER: I think that's why we're here, because we're seeing so many people that come in for this, but the mental health is the underlying big issue that they have.
Although they come in because they have a physical or sensory disability so we want to be able to serve the whole person.
MIKE BACHHUBER: I'll tell you, that's the number one reason for centers to be involved with mental health services, because when mental health organizations are the ones in charge, they usually don't take accessibility into consideration.
AUDIENCE MEMBER: Exactly right.
MIKE BACHHUBER: They don't even understand what they would need to do to take accessibility into consideration, and so centers do get that, and we also get the value of peer support, so those are a couple of the reasons why centers ought to be getting more involved with some of this stuff.