SARAH LAUNDERVILLE: So we're going to start this morning with an overview of our organizations, and again, I'm Sarah Launderville from the Vermont Center for Independent Living, and so I'm going to know how to do all this stuff.

So, there we go.

So our center started with a campaign.

It was called Project Outreach in 1978, where we went around and interviewed 750 people with disabilities in the community.

Around what is it that you need to be independent?

That was the simple question that people were asking, what is it that you need to be independent and we got a variety of answers to help guide us.

We heard things like I need home modifications or assistive technology, socialization, connections to other people who have disabilities, right.

Housing information, personal attendant services and transportation and I always add to my presentations, washing machine.

The previous director of VCIL, was a single mother, cerebral palsy, young child and they knocked on her door, and she was young and they said, what do you need to be independent?

And she said a washing machine.

These simple things right, that today, this can translate today in what we have around needs.

So we were founded in 1979 as a statewide nonprofit and continue to be a statewide organization in Vermont.

Only Center for Independent Living.

Our original bylaws, only addressed people who have physical disabilities.

That's something that over time we had to look at as an organization and make those changes, which eventually happened, and I would encourage and we'll talk a little bit later about some of that, but I would encourage people to look at your own bylaws to see if there's some history there that you didn't know or you don't know about your organization.

And so today, like other centers for independent living, we operate under the core services, which are, you know, peer counseling or information referral and assistance, individual skills training, individual and systems advocacy and nursing home and youth transition and we have just in context some additional programs.

We have an AgrAbility program, where we provide peer support and technical assistance to farmers who have disabilities throughout Vermont.

We have a component within our AgrAbility program, really reaching out to veterans.

A lot of veteran community really wanting to get back to the earth and the land and so we're looking at a veterans' program as well.

We provide a lot of technical assistance around disability related laws to businesses, to the state, to anyone who wants to know that information, to our peers.

We have a home access modification program where we provide ramps and bathroom modifications to folks.

And we run a Meals on Wheels program for folks under the age of 60 who can't prepare their own meals, so we work in all different avenues of skill training first, and so there's a group of folks who really just can't prepare their own meals that we provide Meals on Wheels to.

And that's general fund money.

We're not able to access the same money that our Area Agencies on Aging access at the federal level, but I'm hoping to change that with our new change in ACL.

We run an assistive technology program where we pay up to $1,500 for assistive technology that, or really other equipment that might not traditionally be funded, so you know, somebody who might need an air conditioner to keep cool in their apartment, we'll provide funds for that.

That type of thing. And we have a program called the Wellness Workforce Coalition, which I'm going to get into later in the presentation, and recently, we took on the Vermont Interpreter Referral Service.

The Austine School for the Deaf closed down.

Some might have heard, and through that it left some holes in our community, and so we decided to take on that particular program.

The way that our center works when we're looking at programs or services, it's really around where those holes are and if someone else is going to meet that need, right, this is very iley of us, that they are really going to do that and we're going to push them to do that better.

But if it's going to leave a real hole in our community, then we're going to take on that service for a time and see where that goes.

That's it for me.

I know.

That was fast.

RUTHIE POOLE: I hate to tell you, I obviously talk more than Sarah.

So again, I'm Ruthie Poole.

I was one of the first paid peer workers in Massachusetts, meaning I used my lived experience of mental health diagnosis in my work.

And I work for The Transformation Center.

We're funded by the Substance Abuse and Mental Health Service Administration.

The feds, we have some contracts with them.

But most of our funding comes out of the Department of Mental Health, our state mental health authority and I was talking with some of the folks from Hawaii, some states the mental health authority, did you guys talk about this yesterday when I wasn't here?

So, but the mental health authority, the federal money sometimes comes to a whole state, and for some of your states, it comes to counties, and that makes it quite confusing.

So there's differences, depending on the state.

So us small states, we come, it comes to our whole state.

So what we mostly are known for, we do policy.

I am the director of advocacy, obviously I have a big mouth, and that helps in advocacy, systems advocacy.

And we do training.

We're mostly known for our training.

We are the, the agency that trains certified peer specialists.

So, and we're going to talk more about that later.

Sarah is going to cover that.

And we actually do not get Medicaid billing for that.

There's now, how many states, Dan, who get Medicaid billing?

DANIEL FISHER: Thirty-eight.

RUTHIE POOLE: Thirty-eight states now bill Medicaid.

It seems like a few years ago it was only 12 states.

Massachusetts does not and for some reasons that Sarah is actually going to talk about, but we have a very intensive training.

And this is where a difference between our mental health peer movement and the IL movement.

I know lots of folks in IL say, it's about self-determination, and we're not going to make people be certified to do anything.

If they don't want to be.

And so, and that's a really, that's, that's a one model and great arguments for that.

And then there's great arguments for training people around a core curriculum, because they're going into very hostile work environments.

They're going into mental health agencies where they don't have a lot of degrees behind their names.

They don't have PhDs, M.D.s, blah, blah, blah, licensed social worker degrees, and you know, people say, who the hell are you?

And you say, I'm a certified peer specialist.

I have a CPS behind my name, and they're thinking, wow, her experience is, Ruthie Poole went crazy, so that's her experience, and I've gone to medical school.

And so there's a lot of that.

It's going into pretty hostile work environments.

I feel very grateful that I've not been in one of those hostile work environments.

I decided to keep working for independent living centers, and then now for the Transformation Center, because I hate being in hostile environment personally.

And you guys working in an independent living center was quite glorious for me.

Starting here, a little background.

In 1988, Charlie Carr, who some of you know, because Boston Center for Independent Living was the second independent living center in the country after Berkeley.

NILP is divided a little different, Northeast Independent Living Program.

He fell in love, so he moved up to the Merimac Valley, which is where the old textile mills are.

If people know, the bread and roses strikes were in Lawrence.

Where the famous bread and roses strike was.

And he moved up there because he and his wife could buy a huge accessible house.

He is someone who was, became disabled when he had a diving accident when he was 15.

And so he got together, at that point, the agency was set up a little different.

There was services to blind and visually-impaired community.

There were services to adults with physical disability.

Services for young adults in transition, it had a kind of weird statey kind of weird name that no one understood what it meant, and those were for young adults in transition, and he thought, huh, who don't we have at the table?

We don't have anyone with psychiatric disabilities.

So he met Patricia Deegan, and Pat had her story, her story is quite fascinating.

At 15 she also, they had a lot in common.

They both had a developmental disability.

Now I, being from the, the tenent organizing and welfare rights organizing, I didn't know a lot of the disability terms when I came in.

I knew you don't call people handicapped.

That just sounds wrong.

But I didn't know that developmental disability does not mean intellectual or cognitive disability.

In Massachusetts we still use it that way.

The Department of Developmental Disability, means cognitive or intellectual disability.

So Charlie goes, no Ruthie, I have a developmental disability.

I got a spinal cord injury at 15.

Pat Deegan has a developmental disability.

She went crazy at 15.

So they spent a lot of time how we make social change is human connection.

And that's how we're going to make a difference and that's how we're going to trust.

We have to have trust.

So they spent hours, and if you've ever sat around with Charlie, because he's been involved in some of the national NCIL stuff, he is a great story teller.

And as he would tell me, he goes, Ruthie, I had to be because I couldn't write anything down and there weren't computers, so I had to really develop my short-term memory, so he has both a fascinating long term and short-term memory.

I would love someone to write a book about his life and interview him, because he's an amazing guy.

And Pat is an amazing woman.

They both come from a lot of trauma, very, very, very hard childhoods.

Charlie says this publicly, that if he hadn't been injured, his mom laughs that he'd be in jail or he'd be dead by the time he was 35, and he says that publicly, so I'm not violating his confidentiality.

Pat was in a similar violent household, and they realized they had so much in common.

It happened to be that Charlie was with his buddies skipping school and diving at Revere Beach doing what he shouldn't have done, because he was always skipping school, and Pat, the stress and violence in her household, the trauma, she responded by having a break.

She's been labeled with various mental health issues.

She got really mad and flushed a lot of, young people I love.

My teenagers drive me up a wall, but I love their piss in vinegar, because she flushed the, the drugs down the toilet for schizophrenia, and they have a lot of fight in them, which sometimes we lose that when we're older, and so they realize that they had so much the same.

She went on to Duquesne University, and got her PhD, and was working as a clinical psychologist.

Something happened in her life and she could no longer work doing clinical therapy, one on one therapy, and she ended up on the board of Empower, which is our activist organization in Massachusetts, and so Charlie and she just sat around and talked.

And he goes, how would you like to start a program here?

And they got Department of Mental Health to give them some funding.

I don't remember how many.

60,000, I think.

But, so they started out.

And then she hired Jim Shaw, my friend, because he was on the board of Empower as well and he was one of those really brilliant strategic thinkers, who had been a triple eagle for all of you Catholics that's a big thing, to go to BC High, Boston College High, go to Boston College and then go to Boston College Law School.

That's every Catholic mother's dream in the Boston area.

Anyways, he had ended up with a psychiatric disability and was not working in the field, so he hired her, er, so she hired him.

Then she said, okay, what we really need is not peer support, because peer support is second.

We need social change first.

We need to find out who we are as a people, and we need to cause a little trouble to change the system.

Who could I hire to cause trouble?

Oh, Ruthie Poole is available, she causes lots of trouble, she's very good at that.

She's a professional trouble causer.

So they hired me not because I have mental health issues, I happen to have mental health issues, but they hired me because I was a welfare rights organizer and I'm the only person they knew who had been on top of the state house, with the Act Up people throwing blood on the state house.

I was the only person they knew who had been tenent organizing, so we were activist organizers.

We formed a group that did, explored, what does independent living look like for people with psychiatric disabilities?

Because we've talked already yesterday about how where there's some similarities with disability groups, and some differences.

So there's times that we need to just be with our own people, whoever those people are, and then there's times we need to join with others.

Both are important.

They saw that in the civil rights movement.

The black power movement at that point knew, they needed just be with black people.

And then that there were other times in the civil rights movement that they needed allies.

They needed white folks to come down from the north and help with the freedom rights.

They couldn't do it themselves.

So what we were able to do to really explore that, and Pat wrote a paper in a psychosocial journal that folks can contact me for, it's not accessible because this was before the internet, but I will scan it and send it to people, about what that looks like.

It was published, it's Charlie's story and her story and it's fascinating.

So we also, what I know, is community organizing.

So I went, we went on to form a group called Lawrence Organizing Voices for Empowerment.

What was really funny about that, one of the steering committee members came up with a name, and she's a, she has a great sense of humor.

She meant finding our voice but she also happens to hear voices, so it was a play on words for her.

She thought it was hysterical.

She's like, I'm going to organize my voices, so it really was people had a lot of fun, they gave each other a lot of support, but we had a mission.

Our mission was to change the local mental health system.

And so we did.

We used what people know as a modified Saul Alinski model.

I like to call Saul Alinski the ultimate white male and we used a more, what I call a woman's organizer model, and it's no offense to men in the room.

A more feminist model which is not quite so harsh and more gentle with people and that's what we used.

We used the, we used the part of the Alinski model that is true always in organizing.

Immediate, is it important to people?

It's, that means immediate.

People feel passionately.

Three things when taking on an issue.

Is it specific?

Taking on healthcare reform is really, really hard.

When they ask, we're going to talk about healthcare reform, Justin is.

I was like, we're not taking that on.

We can't explain, we can't understand it, we are not going to be able to explain it to people.

We ended up taking it on anyways but it's been very, very hard to get people excited about, you know, dual eligibility, blah, blah, blah, when I don't really know what it is myself.

So, and is it winnable?

And this is very funny.

Because in organizing, you say, is it winnable?

We always take on things that will never win, right?

But the winnable part is to get the issue out there.

So are we going to win getting rid of forced treatment, involuntary commitment around the country?

No.

There's only five states and I'm proudly from one, that doesn't have forced treatment.

But they're working on it in my state, as they are in the other four.

But we still take that on. And so, but you want to start small and we did do, have some wins in Lawrence Organizing Voices for Empowerment, and they were little wins but big wins for folks.

Everybody got their services at the greater Lawrence mental health center, all poor people go there.

Anybody on Medicaid, anybody on Medicare, that's where they go for their services and you have those similar community mental health services and what they won with them was amazing.

They won written informed consent, so what happened is a clinician had to sit with us, if the people who went there, and they not only had to give us informed consent telling us what our illness was, what they wanted to prescribe, what the risks were.

Risks, they actually had to tell us the risks, which is the law but doctors never do it.

And what they hope it will achieve and what are the alternatives?

We got them to do that in writing, to go beyond federal law.

And that was very, very cool and it was a bunch of people who could never pass.

These are not people, on my good days I can pass.

On my bad days, I can't pass.

But these are folks who could never pass.

You would see them and you'd say, that person has some mental health thing going on, and they won that.

It was those folks who won it, made those demands.

So what, what it's based on is, we really based it on the Mad Pride Movement, which is about disability pride.

It's the same thing, but we're proud of being mad.

I, you can't call me crazy but I'm going to say I'm proud of being crazy because that's part of who I am.

It's not all of who I am but my madness is part of me and I'm proud of myself.

And so I'm going to be proud of that part too.

We need to love ourselves before reaching out to others.

That's why it's very important, I was talking to some folks yesterday about their center and I said, well, you need to form some peer-support groups for folks with psychiatric disabilities because they need to find out who they are as people.

They need to know that Dr. Smith is not only screwing them, it's screwing five other people in town.

It's not them.

They're not crazy.

It's the system that's oppressing them.

What, my favorite saying and if someone here, I'm going to love you if you know who said it.

But what justice is is love distributed.

That's what justice means.

It means the big love.

I'm not talking about romantic love.

I'm talking about what's in our hearts.

That's what justice is.

We as psychiatric survivors cannot do it alone.

We need help from other disability groups.

You are our biggest allies.

When I said yesterday I'm most hurt when someone from the cross-disability movement says stuff to me that's really offensive about my people, it's because you're our allies.

It's, we, when your allies say something, it's like when your mother says something really mean to you, it sucks.

And so we need you as our allies.

And we have a model at NILP, not at NILP, at the Transformation Center that we teach.

We did not invent it.

A woman named LaVerne Saunders, she goes, oh my God, I'm in every oppressed group.

I am an out black lesbian who is a Jew who is a former addict who is in mental health recovery, who is a trauma survivor, who grew up in public housing, it's like she goes, what kind of oppress group don't I have?

I have nothing to lose.

So she's very out there because she has no status to lose.

And she has taught us a beautiful model, that what we need is to be able to support affinity groups and what we mean by that, in my organization, is we're all people with lived experience, right?

But I'm a white woman, so when I walk down the street, the police, when my boys do, big teenage boys, the police do not hassle them.

My friend, Florette is African-American, when her boys, the same age, same good kids, walking down the street, they're hassled by the police every time.

So I benefit from being white, right?

And so I have some privilege that she doesn't have.

And so right now, we are, we are supporting deaf, journey and recovery.

My co-worker next to me, is Marni, if folks know sign, this means funny, and so she's Marni, cause she's very funny.

And Marni is the deaf next to me and she organizes Deaf Journey and Recovery.

So there are folks, deaf folks grow up with a lot of trauma.

Because most of them my age, their mothers had, this is a sign for Rubella, they had Rubella when they were pregnant with those kids so that's why there are so many people my age who are deaf.

They grew up in hearing families and so there was tremendous oppression, and so a lot of folks who are deaf, they are not very out about it, have a lot of mental health challenges.

So we also support young adults.

I'm not a young adult, hysterical, we had a contract, I was put on the team, when I turned 50 and had my first grandchild.

I was like, what's wrong with this picture?

And then I realized because I'm so damn silly that I was the perfect person to be on the young adult team, because they know how silly I am.

And so we also support Latinos in Acion, who are people mostly from Dominican Republic and Puerto Rico in our case.

Some Venezuelans involved and Argentineans as well.

In that community, you don't even get labeled or diagnosed.

Because your mom may have been taking you to either the priest or Pentacostolist, spiritual leader who is going to pray that mental illness out of you.

So, and then the other group that we work with is Black Voices in Recovery, and that's people from the African Diaspora, who are figuring out what it means for them, because they always were taken to spiritual leaders, many of them.

So we also, it also works the other way.

When I was at NILP, I felt it was my duty to organize folks with psychiatric disabilities, who will never qualify for PCA, even though it would help them, to go, the PCA rates were cut.

We did a sit in at the state house, and you better believe, there was at least a dozen people from the LOVE Group, because our brothers and sisters were going to lose their PCAs because their PCAs were going to quit.

So that's how allyship works, and so there's cross-disability organizing that can be done, and then there's times when you have to be an ally to affinity groups.

We've had the pleasure of doing some cross-disability organizing at our state hospital.

How am I doing on time?

Pardon?

Okay.

So, whoops, wrong way.

That's about the funding.

Just quickly about the cross-disability organizing, because this is really exciting.

This is, well, I've been involved in many exciting things, but this is one of the most exciting.

So we had, one of our adults with physical disability workers who happens to have muscular dystrophy, she would go to a peer group, at our local state hospital.

It is a Department of Public Health facility, it is ancient.

Annie Sullivan who taught Helen Keller worked there, she is buried on the grounds I understand.

And so it is ancient.

And so it is in this little narrow minded town called Tewksbury.

They are the biggest employer in town, but the police chief doesn't want those of us with psychiatric disabilities walking to the library because we're going to pull a gun on them.

Don't ask me why.

So anyways, they were finding, the adults with physical disability staff were doing peer groups on DPH units, people with chronic illness.

One of the leaders has MS and it was progressing quickly and he couldn't find accessible housing, so he ended up there.

Another guy, a spinal cord injury where he wasn't able to regulate his body temperature at all and so he needed nursing support.

He had no family, or real friends.

But anyways, they thought because of the mental health units, five mental health units had carpet, seriously they thought this.

That the people with psychiatric disabilities on the department of mental health units had it really good, which you know, kind of cracked up the people on the mental health units because they're, like, our carpet is disgusting, because carpet gets disgusting very quickly in a hospital.

But it is carpet.

But you guys get to go off grounds.

You get to go to the town library.

They don't let us off the grounds.

So we realized it's the old, the grass is always greener, and so what we did, we brought people together.

And it was so cool because it was a great risk to them because they live there.

To organize against the people who have power over you is tremendously brave, because these folks weren't leaving there.

So they could be punished in obvious and subtle ways.

But they were really brave.

And so what, what we did is, we got great press.

The reporter from the Eagle Tribune, which is the big paper from the Merimac Valley, ended up getting a national award for her series because she believed us.

The thing about having a psychiatric label is the number of times I have not been believed by people in authority.

Oh, she must be manic, she must be depressed.

She's just one of those crazy people.

The number of times I've experienced that in my life is horrendous and this woman believed us and she dug deep.

She found out that there was somebody who, on a trip off grounds, a mental health patient eloped, they call it, walked off.

His elderly mother, middle of the winter, said I think he must be out in the woods behind my house.

When he's not well, he's out there.

Please go out there, please go out there.

They found him frozen to death.

She dug up all this stuff up.

She dug up rapes they had covered up and not called the DA because it's a big employer in town.

She dug up all this stuff, and so it was this great series and it blew it wide open.

And Department of Public Health tried to whitewash it by bringing in a guy with a spinal cord injury who works for the disability policy consortium to write a report.

He has a master's in public health, and so Dennis interviewed us, interviewed the patients, blah, blah, blah, and he realized that he was being used.

So Dennis, I didn't know this, he never, he ended up quitting in disgust.

He told me this a few years ago.

Ruthie, I never submitted that report.

I said, you didn't?

I thought you were the biggest sellout I ever met, frankly, Dennis.

And he goes, oh, no, I was so disgusted that at the last minute I said, I'm not submitting this, because you all are frauds, and so what happened is, we got the CEO fired.

That never happens.

The superintendent.

We got his ass fired.

This is a guy who makes 150,000 a year.

So really exciting things can happen in cross-disability organizing.

And you just have to be a little creative.

I think sometimes our biggest problem is, not a lack of money.

It's a lack of creativity.

It's a lack of, like, thinking outside the box, as they say, in advertising or whatever.

So this is just going over the funding.

The, Charlie and Pat, Charlie Carr, Pat Deegan, they got the 60,000 from DMH for this pilot.

Grew to 130,000 over time.

When I left there, before the Recovery Learning Community, that's what Justin is going to talk about, we got $250,000 from the Department of Mental Health for our peer-run activities, meaning mental health peer run.

That was from our area office.

Six areas in little Massachusetts.

In greater Boston, they gave out zero for peer-run projects.

Zero.

And Boston is our big city, obviously, and so we were quite proud of that, but that was because of the leadership at Northeastern Independent Living Program.

It wasn't because of just people with psychiatric disabilities organizing.

It was because Charlie Carr and the others in administration who did not have psychiatric disabilities supported us.

I'm going to skip the campaign for written informed consent.

I guess I went over that.

We put on an annual conference, which was a very exciting thing that I'm not going to go over.

But that was a way to get people involved.

If you have a conference, somebody who has been institutionalized and that's how people are in the community, when Dan was talking about the history, people getting discharged in the '60s and '70s, they then became institutionalized in group homes in the community.

And those folks are about my age and up, and so for them to come to a conference was, like, no way in hell.

I go to my day program, I go home, I smoke on my porch, and I go to bed and that's my life, and that's what I can, because after a while, you quit hoping.

When your life sucks, you quit hoping.

So we would go out and we'd get, we'd do these mini workshops to recruit them out of clubhouses.

That's a fountain house model that you can look up later.

But we would go these clubhouses and we'd recruit.

My friend Jim and I.

So like in 1990, there was this movie out, really offensive called Crazy People.

It was with Dudley Moore.

We showed them the advertisements for it, which was really, you know, I hate the word stigma, frankly, but I'm going to use it.

It's like a stigma buster thing.

I wish all those stigma busters would work on the real issues of oppression.

But this one it worked, we needed something light.

Because if we were doing edgy stuff, people would have gone, no way, I'm not going.

Because a lot of our community has a history of incarceration, so things like that scare us, because a lot of us have addictions issues, and so we've been incarcerated so you have to be gentle with some folks.

And so we got him to sign on to this letter, and what was hysterical, we sent the letter to all the producers and stuff in Hollywood.

Dudley Moore wrote us back.

He was really sad.

He'd been in it.

A personal letter from him.

Before internet.

He was really sad that he had offended all these people with mental health conditions in Massachusetts.

We also paid people $5 when they would sing a song, read a poem, play an instrument at our conference.

And for the folks I'm talking about, $5 is like $5,000.

These are not people who are taking the ticket to work.

No.

These are people who have never been employed.

The people on SSI, who have grown up in the system.

So to have their work and art recognized, oh my God, it was like heaven.

But it took a great deal of staff time and energy and very often that's not what we have.

Oops.

So the last project before I left there that we had added, and Justin came after I left, was a Peer-to-Peer Counseling Project.

And this was pretty cool.

DMH funded it at 60,000 annually.

Our six recovery learning communities that are funded by the Department of Mental Health in Massachusetts are new, and that's what Justin is going to talk about, because I left, I either was fired or quit, I still haven't figured out before it started, but that's a whole story.

But we, what some people are never going to come to a group.

Somebody who is really scared to go out of their house is never coming to a peer support group.

No matter where you have that group, they're not coming.

And lots of us, for myself included, I'm obviously a very social person, when I'm depressed, it's almost like the Invasion of the Body Snatchers.

That's what I call it.

It's the invasion of the mind snatches, they invade, these creatures from outer space and I become very isolated and I stay at home and I don't call people and I am not social and I watch TV and I read and that's my joy, and it's not joy because I can't feel joy.

And so that's true for lots of us who deal with depression or anxiety, and so anyways, we did, it was a one on one peer counseling project.

So we trained, stipend volunteers who were paid very little, $50 a month, to spend four hours a week with folks, so it really was volunteer, paid for the bus fare.

To be able to, we matched them, we did a matchmaker, so say I'm the person receiving services, and I want, I don't like men, so I want a woman, I want someone my age.

I like to knit.

I want someone who knows crafts, and so we try to do like this match making thing, so match the peer counselors and it worked really well and we developed a whole curriculum.

Samaritans was very kind.

This was very early on.

1990.

So, or was it, anyways, early '90s.

Samaritans was very generous with their befriending curriculum.

The thing about peer-support curriculums, they're all about being kind, listening and validating, and that's what you all learn.

That's what you do at ILs, so I guess I told the rest, and then we got 60,000 for the Latino community, because I am a pest, man.

Ruthie P. stands for pest and I just went after the area office.

I said, Lawrence is 90% Latino, per capita, it is the poorest city in New England.

It is the most Latino, and that is the people who are documented.

We're not talking about the undocumented folks.

So I said, and we have everything.

To hear Haitians speak perfect Spanish because they grew up on the DR side of the island blew me away.

I kept at them, kept at them, four white women cannot, serve the Latino community.

It's not culturally competent.

That's the term.

I don't know how you can be competent in someone else's culture but that's the term used.

We're not culturally competent and you don't think it's a good idea that DMH-funded programs aren't culturally competent.

They said, no, we don't think so, so we finally found a Latina that ran the peer counseling project among Latinos.

Some of them didn't speak any English, didn't matter.

They provided their services in Spanish.

So finally, because he is going to take the vaudeville hook, here's Justin.

[ Applause ] JUSTIN BROWN: Originally Ruthie hadn't been considered for this workshop, and I thought she just needs to be here because what Ruthie has described to you is really a process of transformation at the Northeast Independent Living Program, that came from within.

I'm the director of the Northeast Recovery Learning Community, and in a sense what I bring to NILP is something that's come from without.

And I just want to be clear and actually fairly brief.

Because we were organizing not only the work that Ruthie is talking about, but as a movement across Massachusetts we were able to do what Ruthie talked about, to find something immediate, specific, and winnable.

And what we did is, we organized around 100% peer to peer communities, and we advocated for six of these, matching the Department of Mental Health structure across Massachusetts, and at that point, after that organizing had occurred, after the Department of Mental Health had agreed to provide this funding, it was about, ended up being about $575,000 for each of these six centers.

NILP bid on that, so that was a huge influx of money into NILP around psychiatric disabilities, specific.

As we look out over the room, are you going to go find a similar grant?

Well, maybe, through SAMHSA, maybe through the feds, but I doubt that your state is going to just drop that kind of money on your independent living center, and the reason for that is that it's really a massive organizing effort on the part of people with psychiatric disabilities to get that money designated, and the most important thing I want to say about that money is that it wasn't money to increase mental health services in the traditional sense.

That's what I worry sometimes, people are going to walk out of this meeting and they're going to go say, well, we need, you know, some more money that's traditional mental health services.

Well, that's not what I'm asking you to do.

What I'm asking you to do is go out and organize.

Like Ruthie was talking about for peer-to-peer support, we are 100% peer support.

And I'm going to not take a whole lot of your time, but I'm just, let me, so let's just talk about what we convinced the Department of Mental Health to do.

We convinced them to create these quote, consumer run networks.

We're going to find out we're not always comfortable with that term consumer, for self-help, peer support, information and referral, advocacy and training activities.

So we're really advocates and trainers, as well as peer-to-peer support.

We don't like that term anymore, peer counseling.

We prefer peer-to-peer support.

Because it's direct, it's immediate.

No one is the expert.

Often a counselor is viewed as an expert.

We're just mutually supportive, people with lived experience and this is the other piece I like to talk about, and it's right off of the Department of Mental Health website.

First and foremost, the recovery learning communities create significant culture change that shifts the focus from symptom management to a focus on promoting recovery, resilience, and wellness.

RLCs also support consumers to take charge of their own recovery process.

So I think when you say, you know, what do we need to reach out more effectively to people with a psychiatric diagnosis?

It's not necessarily, you know, more information about mental health.

It's really much more about shifting the focus from symptoms and symptom management to resiliency, to that power that each of us has within ourselves to bounce back after we've been knocked down, and you get that sense from Ruthie.

We keep getting knocked down and we keep bouncing back.

That's what our mission is, and that's the kind of resilience that we would urge every, you know, independent living center in this country to try to cultivate.

It's not about consumers who need traditional mental health services.

It's about human beings who want to find that mutual support that they can only find from their peers.

So we run, we've run out of time for this section.

We're going to skip over the next couple of slides, but I just want to say here at the end that this article, the independent living movement and people with psychiatric disabilities, taking control back over our own lives, by Pat Deegan, 1991.

Excellent article.

We didn't print it out because we don't have accessible copies for you.

Contact Ruthie, contact myself.

RUTHIE POOLE: I will send it to you.

It's not online.

It's right here and I'll send it to you and if you can make it accessible to what you need, if I send it in a, I don't know if it's in Word, it would have to be PDF because, I don't even have, I think it was typed.

I don't think it was typed on a computer.

So I know that's hard, but anybody who knows acrobat well, which I don't, you'll figure it out.

JUSTIN BROWN: All right.

Thank you.