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.

>> TIM FUCHS: We will get started, I'm really excited to switch gears here and move on to systems advocacy related to housing.

I want to thank -- I want to introduce and thank our two facilitators, Amber Smock and Adam Ballard.

I know a loft you met them -- a lot of you met them last night at the event if you didn't know them already.

When we started to organize this training, we knew that Access Living had a lot of success and great work, and when we reached out to amber to start coordinating, she put us in touch with Adam, the housing advocate at Access Living of course amber is the advocate at Access Living.

They would have been a strong presentation team themselves, but they then started to coordinate presenters from all over the state.

So not only will we be hearing from a wealth of presenters from Access Living that all have different perspective related to their jobs and their advocacy at the center, but we'll be hearing from the mayor's office, hearing from HUD, hearing from the housing authority.

So over the next two days we really have an outstanding team of presenters to give you kind of a full perspective on how things work in Illinois, and to help you get not only tips from other center advocates, but tips from insiders as well.

So I want to introduce Adam and Amber and thank them so much for putting together a great presentation.

With that let's get started.

>> AMBER SMOCK:  Okay. So good morning. My name is Amber Smock.
Director of advocacy at Access Living.

Access Living is the Center for Independent Living for metropolitan Chicago.

I really want to thank everybody here for attending and I know you've been working really hard the last two days.

I know they are working another two days around these issues is going to be tiring and draining and all that.

So we'll do our best to keep the energy up.

I am really excited about the people that you'll be hearing from today and tomorrow.

We'll talk a little bit about them.

But I really want to just kick off a little bit by saying why I'm here doing this.

As director of advocacy for Access Living I oversee staff who do policy work and organizing here in the city of Chicago.

And we do it on the local, state, and national levels.

But my main experience has been more with healthcare, long-term care services, Olmstead, et cetera, youth organizing, women's work.

Those are the issues that are my background.

As Olmstead has continued to go forward especially in Illinois with class action cases that are implementation phases right now, we're seeing that we really need to step up in terms of the kinds of housing opportunities we're trying to expand for people with disabilities that we serve.

In addition, financial climate across the country is changing, so I'm sure lots of people have experienced budget cuts.

How many people have experienced budget cuts at your center?

With the budget cuts going on how do you serve the people coming to you asking for help.

That's a critical issue.

We've already been talking about this for two days' straight so I don't need to go into that anymore.

I want to say that the team of people that will be doing presentations over the next couple days, are not just housing advocates, they are housing advocates, but they are looking to try to connect housing into the whole wrap-around set of things that people need to be able to be independent.

Let me say really quickly, today I know you will be hearing from our long-time community organizer advocate in housing Beto, he is a staff member at Access Living.

You'll also be hearing from community organizers, and Adam is going to be facilitating a panel of community organizer.

And two of our attorneys at Access Living will be presenting the final workshop at the day.

You'll be hearing from the movement.

You'll be hearing about funding streams.

I hear people were talking about funding streams, we will talk about them some more.

Talk about organizing.

Talk about the law.

It will be a really full day.

What I would like to do is also state that I know that people here are from all over the country.

Every state is different.

Every county even is different.

What I'm going to have -- we're not going to have answers for everybody's county and state.

We're going to do the best we can to answer the questions that you have knowing that most of the presenters over the next couple days are based in Chicago, which is a large urban metro area.

Right?

 We know that people with disabilities need housing everywhere, in the country, in suburban settings.

What we're trying to do is provide some examples, get people thinking and helping people find solution that is will work for you.

I want to be clear that we're not here to say that our model is the best.

We're not here to say that we secure the most housing for everybody more than anybody else.

But we do want to say that we have found some things that work.

We ourselves are continuing to struggle to find solutions.

And we're excited to be here with you and hear from you and share ideas.

Let me go ahead and have Adam introduce himself.

>> ADAM BALLARD: Good morning, everybody.

Mic on?

 Okay.

I'm Adam, the housing organizer at Access Living.

And the reason that I have been really excited about being here with you all this morning is as a person with a physical disability myself housing has long been the struggle of my life.

I still live with family even as a full-time professional person just because there is so little affordable accessible housing out there.

I grew up in the country so I know it is just as hard to find it there, too.

Another reason why this work is very important to me is because I spent 3 months as a person who lived in an institution and the sole reason that I lived in an institution for 3 months is because my apartment at the time was not adequate.

I became injured, I broke both my knees falling off a bus, and because of that I was in traction.

Both my legs were in straight leg casts and I couldn't get in my apartment.

I was equal -- was qualified to have nursing home in my.

I spent 3 months in the nursing home.

As we know our movement is largely based around the idea that people should never have to be in a nursing home or institution if they don't want to be.

So having a 6-month old child come to visit me in a nursing home was a difficult situation for me to be in.

It ignited my passion for housing at that time.

I came to Access Living originally as a youth organizer, followed in Amber's footsteps in that role, but after a year the housing position came open and I jumped for it, because housing being so important for me for so long.

So I'm excited to be here with you all.

I feel really excited about like Amber said the roster of speakers we have coming in to back us up.

Because Amber and I are both perfectly capable of talking your ear off for two days, but we felt very important to get a wide variety of voices, wide variety of background come in and share what is happening in Chicago.

Like Amber said, our approach is unique in Chicago.

It should be.

But we do feel like there are some things that we've learned that are if not completely replicable, at least might help you start to think about how you can use these same kind of tools back in your setting.

That's my hope for today and tomorrow, and I look forward to it.

>> AMBER SMOCK: So because both Adam and I started out as organizers, one of the things that organizers do constantly ask people how their gut feels about something.

The gut check.

How you are feeling.

How is this really working for you?

So I'm curious to hear from maybe a few people, like what is your gut telling you about the conference right now?

You have within here for two days, you are going to have another two days.

What is your gut tell you about where you have been and where you might be going today?

Any volunteers?

Gut check! Right here.

>> ADAM BALLARD:  We do this as an organizing exercises, we ask for one or two words and ask you to explain why you chose the one or two words.

A feeling word that sums up how you feel about the conference so far.

>> AUDIENCE MEMBER:  Inspiring.

>> AMBER SMOCK:  Can I remind people that you need to use the mic when you volunteer.

Thanks.

>> WOMAN:  Inspiring.

>> AMBER SMOCK:  Inspiring.

Awesome.

That's a good word.

Any other words from another person?

>> WOMAN:  Insightful.

>> AMBER SMOCK:  h, insightful.

I think that's
 good, too.

> MAN: Very informative.

>> AMBER SMOCK: Informative.

Okay.

These are all words that begin with I.

(Laughter.) 

It seems like Sesame Street.

Yes, Ma'am?

> WOMAN: Demanding.

>> AMBER SMOCK: Oh, demanding.

Okay.

Let me clarify did you feel demanding?

Or do you feel the conference is demanding?

>> WOMAN: Conference is demanding.

>> AMBER SMOCK: Okay.

The conference is demanding.

Any other words that people would like to feel about their gut check?

>> MAN: Powerful information.

Smock mock okay.

>> AMBER SMOCK: Okay.

Excellent.

Any other volunteers?

Way in the corner.

>> MAN: Reality.

>> AMBER SMOCK: Oh, reality.

Okay.

That's good.

 Glad to hear it.

Any other words?

I'll take one more maybe.

Okay.

Hopefully not sleepy.

I hope you've all had your caffeine and you know, all that, because it is going to be a long day of thinking and sharing and all that.

Why don't we go ahead and switch over to Adam, I think you have the next bit.

>> ADAM BALLARD: Another exercise we want to do real quick before we get into content to kind of set maybe the agenda, we have an agenda obviously, but set parameters for discussion over the next few days.

We want to hear from you guys about what are the biggest housing issues -- related issues facing you at home where you are at.

What are the challenges you are seeing, what are you facing.

We want to capture these on the board here so we can at times check back on those and make sure we're addressing as much as your reality as we can as we go through this.

We need a couple volunteers to share what your biggest housing-related challenges are.

>> AMBER SMOCK: Wait.

Real quick I want to also state.

We're well aware that there is possibly going to be some overlap in discussion topics and everything.

 Even if something sounds repetitive at any point, consider reenforcement.

That's a positive way to look at it.

Okay?

But definitely we happen to be rehashing something you have already done, alert us.

Whatever you need to do.

>> WOMAN: I would say lack of what I like to call the trifecta in housing, accessibility, affordability, (inaudible) happening together much and when you add in somebody who also has the additional issue of having an extensive criminal background, it gets to be even more of a challenge.

So all of those things.

(Third one was availability)

>> ADAM BALLARD: Anyone else?

>> WOMAN: Affordability, the tax credit
 properties.

>> AMBER SMOCK: Affordability tax credit properties?

>> WOMAN: Yes.

>> ADAM BALLARD: Others?

>> MAN: Resistance from the community to allow any new housing to be built.

>> ADAM BALLARD: NYBIAN.

It is an organizing term, not in my backyard.

>> MAN: Linking vouchers to accessible units.

A lot of times -- a lot of the accessible units are market value as opposed to what a lot of people might need that are on like SSI, SSDI is the combination of a voucher and an accessible unit, and they are oftentimes not linked.

>> WOMAN: I didn't get called on but -- I'm sorry.

 Can I just jump in here?

>> ADAM BALLARD: Yes.

>> WOMAN: I think one of the things we're lacking in our community are the support services to help people really successfully transition from not even institutions, but from some supervised living situation out into their own place.

>> ADAM BALLARD: For some reason I'm having hard seeing the rooms sometimes.

I see a hand right here.

>> WOMAN: The two things that we face is availability and its true accessibility for people that are not elderly.

They will lump them all together or you have to wait until someone goes into a nursing home or passes for young adults.

And it being truly accessible for people with disabilities.

>> ADAM BALLARD: Other hands that I'm missing?

If I am missing you -- oh, okay.

In the corner.

>> WOMAN: New construction and looking at homes that are visitable.

Much.

>> ADAM BALLARD: Everyone know what visibility is?

Visitability is.

>> WOMAN: Integration within different cultural and ethic populations.

>> ADAM BALLARD: Here and then we'll come back there.

>> MAN: We face a real problem not only in lack of units, but in getting housing providers to prioritize for people transitioning out of nursing homes.

>> ADAM BALLARD: Back there and we'll come to the middle.

Okay.

Briefly, I think we'll touch on it later.

But visitability is the idea of having basic accessibility standards built into the new homes.

So as the zero step entrance, accessible bathroom on the first floor and I think it is the outlets are the third thing.

Right?

 Somebody who knows?

Yeah, right.

Okay.

Outlets.

So having those three things built into all new homes is the idea of visitability.

>> MAN: The reenforcement behind the bathroom.

>> ADAM BALLARD: Right.

For grab bars.

Right.

Over here and I think we'll be done.

>> WOMAN: I come from a pretty rural area and a lot of the apartments are in private homes.

So they are almost never accessible unless somebody specifically built their home for themselves to be accessible.

>> ADAM BALLARD: Yeah.

As someone who grew up in the country, lack of accessibility in old housing, actually a lot of old housing stock in the city here.

 We run into the same thing.

Most apartments in Chicago are courtyard walkups.

ADA doesn't cover them.

>> MAN: The fact that fair housing doesn't apply to single family, duplexes, triplexes, or town homes.

>> ADAM BALLARD: Yeah, the loop holes.

And that's a big one.

Okay.

I think we're going to stop here.

If something else is burning that you really want to have up there, please go ahead.

I want to make sure -- we have a really good list here.

These are all issues that I think we have thought about or addressed in one way or another.

Yeah, good list.

>> AMBER SMOCK: Okay.

So for summary of what the notes are a that you have provided knowing that this is not all inclusive, right?

Number one people brought up is lack of accessible, -- lack of accessibility, affordability, availability especially happening at the same time.

The problem of affordability of tax credit properties.

The not in my backyard problem.

Resistance from communities when you are trying to set up disability housing in their area.

The lack of vouchers.

Problem with market value and vouchers for apartments like not working with -- vouchers not working with market value apartments.

Lack of support services for transition, especially supervisory people when people transition into the community.

Problem of true accessibility.

Also the problem of aging in the community.

The issue of new construction and visitability.

 The lack of visitable units in new construction.

Problem of providers actually allowing for transition, so you catch -- cancels -- lets them be in that provider situation forever.

Problem with private homes not being accessible.

 And the issue of fair housing not applying to single family homes.

That's a good start, I'm curious where we're going to go over the next few days.

Is your opinion going to change?

Are we going to have more avenues for those things?

Let's see where we go.

With that I think you have ain't ducks.

>> ADAM BALLARD: Right.

So that's it for our introduction.

We're going to go ahead and move into our first session with content.

Our presenters is going to be someone who has been here with you the last couple days so you probably already heard enough of him, but he will talk to you some more.

Beto Berraro the my direct supervisor.

Before that the head of the housing team for 20 some years.

's done a lot of work locally, regionally and nationally on housing issues, he will talk with us about the history of disability housing movement.

Really how all this started.

(Applause.) 

>> ALBERTO BARRERA: We only have one mic that is a clip-on mic.

We don't have any other clip-on mics?

 Because then I can use my hands all over the place.

(Laughter.) 

The light is kind of blinding me here.

My name is Alberto Barrera.

(Speaking Spanish) 
I love do that when I start anything, because the one thing that it does, it kind of breaks some of the tension, including mine.

And also I like to see the faces of ASL interpreters and the person typing over there.

(Laughter.) 

She's like, oh, shit.

Kind of hard.

I'm very, very excited and happy to be here today.

 I have spoken with many of you throughout these last two days, including yesterday at Access Living's reception.

 I'm very happy that most of you or about 90% came over.

 I'm glad that some of you went out there to party further.

I asked one person, I don't want to mention a name and she's sitting a the that table over there – 

(Laughter.) 

-- she says, hey, you look like you had a tough night.

She says I only had one drink.

Then a friend walks over and says, the drink was this big (indicating).

(Laughter.) 

Huge margarita.

I was asked to come here and talk and give you like a historical perspective or ideas or a message about how this thing, the historical and housing -- the housing movement.

Very happy.

And it also makes me feel a little older.

I wanted to throw out some names to you all that I have had the pleasure of working and learning from throughout the years.

I've been involved in organizing in what we call the fair housing movement already for about -- I don't know, I hate to say that, but it has been many, many years.

(Laughter.)

So let's leave it at that.

These are the people that I have worked and I admire and respect quite a bit and they are kind of my heroes.

Does everyone know who Ron May is?

Was?

Ron Mays.

 Wow!.

He is the father of universal design.

You heard of universal design?

(Whistling) What is universal design?

Anyone?

Can someone?

 Can anyone tell me what universal design is?

One person over there.

Mike, please.

Use your mic.

>> WOMAN: Designing for across the age span for accessibility to everyone.

So it is things that are not necessarily accessibility features, but they make it easy for everyone to utilize the space available.

>> ALBERTO BARRERA: That's right.

Universal design.

Anyone else?

Any other designs of universal design?

Those of you that were at Access Living yesterday were in a building that is universal design.

We have received international and national awards in our design.

It is a place where like the young lady is saying, it is a place where everyone is welcome.

It doesn't look like a nursing home.

It doesn't look like people with disabilities might work or reside in those areas.

And Ron Mays was a teacher of universal design in University of North Carolina in Raleigh.

Great man.

He asked me to be on his board, and I was kind of reluctant to do that because my work was making -- developing affordable and accessible housing, integrated affordable and accessible housing.

And I told Ron it is hard for me to come and fight for universal design so people can go to the museums, can go to other government offices, or go to the moon!

When we cannot get into public housing because they are not accessible.

I said that's exactly why we want -- I want you to come to my board.

And I was on his board for a while.

But that's one great man that is in the history books as a person who made a difference in construction and design for people with disabilities.

Universally.

What about Bonnie Millsteen.

Anybody from California?

Bonnie Millsteen.

She was another person that build her career -- started her career at the United States department of housing and urban development, HUD.

She was one of the persons together with the rest of the group I'm mentioning that were instrumental in writing the regulations of Section 504 of the rehabilitation act.

And yesterday -- or day before yesterday we talked a little bit about 504.

First of all I want to make sure that most of you know what 504 is.

Just the basics of it.

Can someone repeat it again from a couple days ago?

The Rehabilitation Act of 1973?

504.

Section 504.

What does it basically say?

Going once.

Yes, sir?

Mic, please.

>> MAN: It states that people who -- programs that receive federal funding must be accessible programatically and physically.

It is not the wording of it, but that's the effect.

>> ALBERTO BARRERA: Very basic.

Any entity receiving public funding has to have equal access in all programs, services, and activities for people with disabilities.

Period.

I might have to say that for advocates, housing advocates, and housing organizing -- organizers, 504 is a great, great law if you put it to good use.

And yesterday we did -- we passed out accomplishments that we have done in the city of Chicago with our public housing authority.

Chicago Housing Authority.

And that was by effectively using 504.

Using that law.

So if it is well used, you can accomplish quite a bit.

And these individuals that I'm mentioning had a major role in having the regulations written for 504.

We know -- I don't know who has seen a little historical document on the power of 504?

Where Judith Hughman is one of the leaders that take over of the San Francisco federal building for 22 days.

Who has seen it.

Raise your hand.

(Show of hands.)

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12!13.
13.

 Lucky number.

So that was a 1973 -- '79 that that takeover of the Hugh building, there were no HUD.

It was the what?

The housing education, welfare department.

One of the buildings in San Francisco was taken over by some advocates so that Nixon or who -- yeah –

>> ADAM BALLARD: Carter.

>> ALBERTO BARRERA: Carter signed the 504.

So they did sign it.

The thing is that whenever there is a new law, we have to create -- our government has to create regulations with our input.

It took 20 years later for it to do -- to have the regulations written for 504.

 And these individuals I am naming had a major role in writing those regulations for HUD.

Ron hays, Ronnie Millsteen.

Who knows Elenore Schmidt.

I have said before that Ron Mays is the godfather, the father, and the creator of universal design in this country.

Eleanor Schmidt is the mother of visitability.

 The visitability that Adam described a little while ago.

And there is another guy from Atlanta, his name is Mark Johnson, he is a good friend of mine, is an old timer ADAPT guy, and he was videotaped about visitability.

They did small video on it.

And he saying in the video, describing visitability and he simply says, we just want to get in there, pee, and get out! 

(Laughter.) 

Simple.

That's what visitability is.

Being able to get in, using the bathroom, and getting out.

And he said it very well.

Now visitability is a great organizing tool for many of us advocates.

There has been visitability laws passed at some state levels, county levels, municipal levels.

Here in Chicago our municipal codes are based on visitability.

Anything that is built in Chicago private through public has to comply with visitability standards.

For those designs that don't have to comply -- they cannot or don't have to comply with the fair housing amendments act design and construction mandates, or 504 design and construction.

That's where visitability comes in.

Town homes.

And the people in Vermont, where is the Vermont?

 Vermont is the first state that made town homes visitable.

They passed this law, oh, way back!

In Vermont, very proud people to say, we were the first ones that have a law for town homes to be visitable.

You know how tone homes are designed.

They are little square boxes, but in the state of Vermont, those little boxes have to be visitable.

That's Eleanor Schmidt.

Still lives in Atlanta.

And she's one of the persons that they can prove that one person, one person with one idea can change the world.

And she has changed a lot of design and construction codes and laws in this country.

And I'm very proud to be calling her friend.

That's Eleanor Schmidt.

And then Sarah Pratt.

Who knows Sarah Pra it.
T.

 She's -- Pratt.

She's still kicking butt out there.

 She is an attorney, and she started her career as well at HUD.

And she worked a lot of designing construction.

 Matter of fact she has a consultant very popular firm up in consulting firm in DC.

She was also very instrumental when within HUD to put together this group of people to write the regulations of 504 in the area of housing.

That's Sarah P Ratt.

She's the person you want to come and do training on design and construction for architects, developers, and advocates.

She puts it very simple and she has great materials.

But most part-timely -- importantly she's one of the person that said or design how the UFA standards would apply for 504.

We know what UFAS are?

 The uniform federal accessibility standards.

Those are the codes that are applied and the design of publicly funded entities.

Okay?

Particularly housing, those are the UFAS.

Then this is -- Bob Arranger.

He does a consulting form and does consulting across the country in the area of 504.

He has Bob Arranger consulting firm in DC.

He is also instrumental in writing the regulations of 504.

And then you have -- we have one local person, but he's nationally known, as the enforcer of 504.

His name is Herb Suqadorf.

He worked many years at region 5 head quarter here in Chicago.

But we're talking about him with Maggie yesterday.

He's like this walking 504 regulations encyclopedia person.

Everything is in his head.

And he taught me a lot.

I mean I had to bring a tape recorder because I couldn't write fast enough when he -- when we were talking about enforcement of 504.

 And defining different sections which is very important.

Those are the individuals -- there are more.

There are quite more.

But these are the people that I worked with.

These are the people that taught me quite a lot.

 The first generation of housing advocates in the housing -- in the fair housing movement.

Then came a second kind of generation now.

And that will be again Mark Johnson from Atlanta.

One of the old time ADAPT members, and very active.

You have Bob Lista.

He used to be the ED for CIL in Ann Arbor, Michigan.

He is now in Montana.

He headed a fair housing organization there.

He's also one of the national leaders of ADAPT.

Bob Listen.

You have Karen Tamley who is going to be here today -- tomorrow is going to be here.

We brought -- I brought Karen into Chicago way back.

I met her because she was -- I met her through the phone by the way.

She was doing implementing homeownership programs in Denver.

 Originally from California but she worked in Denver.

 That's how I met her through the phones and then we finally met and I want to talk about how we met and how we came to work together for housing justice for people with disabilities.

There was Karen Tamley, Vecca Vaughn from Topeka Center for Independent Living, Bill Henning who is now the ED for a Boston CIL R Bill Hennings.

These are the people.

These are the people that I had pleasure and also -- that I learned a lot and we worked together and we accomplished systemic changes at HUD and at state levels and municipal levels.

Again, there are still more people of that generation.

Then we got the younger guys like Adam, like Daryl Price up in Ohio, in Dayton, Ohio.

Somebody is here from Ohio.

Somebody from Alton.

Oh, she drank too much last night.

(Laughter)
We missed about 5 people here.

So these are the people that I have worked with.

 There are many other people that put a mark on the history of fair housing or housing justice or justice for all housing in this country.

People that have committed themselves no matter what to achieve that.

These are the relentless, tireless people that have done.

A lot of us have put work before family.

We have gone to jail.

We have gone bankruptcy.

We have lost our homes.

Because of this, and many of these people that I have mentioned have done that.

And I have a lot of respect for many of those people.

So their legacy is going to continue to be alive, to continue.

Yesterday Mark was talking a little too fast for me and I wrote some nets of what you said -- notes of what you said all over the place.

But she said something very interesting that we need a fundamental change to house people with disability in this country.

We need that.

We need to take this to another level.

To the national level.

We need to reunite so that we can create this fundamental change.

Throughout history we have had housing silos all over the place.

Starting from nursing homes.

We just celebrated the 47 birthday of Medicaid couple weeks ago.

 Amber celebrated it by having more than 20 organizations into a protest, in a march.

That was great celebration.

 Okay?

But that's how nursing homes were born.

They were born to assist people in nursing homes, and not in the community.

Many of these advocates said, wait a minute, wait a minute, wait a minute!

We need funding also for community living.

And what Congress said, okay, there will be money available there for community support systems and community living, but it is up to the states.

The states have to decide that.

Up fortunately, a lot of people, some of us, and some of these folks didn't like that because now we had to deal with state politics.

In Illinois ranks one of the worst states on designing funding for community living.

It is an uphill battle and many states are like that.

Illinois still has state institutions.

We're still one of those states that have that.

Which in many other states are being closed.

And Amber passion is about closing these institutions.

Some of us have the passion also to close nursing homes, but we are not choice eliminators.

We do not eliminate those choices that were put in the books many years ago.

We now want to create more choices for community integration.

A couple days ago, Ann did a wonderful job defining integration.

There is no and or buts about integration is.

We either have full integration or no integration at all.

And we went over what that is.

What is our understanding of integration.

It is not the same to integrate a group home, that integrate the individuals that are in the group home.

 Way different.

We have to sometimes I have heard Marca say that as advocates we have to get out of this box.

 We have to be creative now.

We have to create more choices of independent integrated living for our community.

We have to not be conform by the idea that group homes are better than nursing homes.

Can't.

Even if it is for or against, no, you can't.

Someone described to me one time that group homes were like a big nursing home exploding, boom, and then you see all these little group homes land all over the country.

Okay?

People, advocates, oh, okay, that's fine.

That's better then a nursing home.

But that's not full integration.

I have a wonderful daughter I love very much and she was about, I don't know, 35 years ago, she's about 40 something now, she says, dad, I want to talk to you, dad.

I says, sure, come on.

What's up?

She says, dad, I want you to know that I'm a little pregnant.

(Laughter.) 

That's what she said.

I'm a little pregnant.

I said, define "little", baby.

The same thing is for integration.

When these people that I have talked about, here is what they've been fighting for.

The people at that table over there, the organizers of this event, we're a new era now.

We have to depend on the current generations of advocates to accomplish this.

Everyone in this room is an advocate.

When I was hearing day before yesterday, the introductions of the people that were here and what they were doing, we found that there were people here that are transition coordinators, housing counselors, modification coordinators, housing search counselors, service providers, housing specialists, homeownership coordinators, and development staff, those people are fine.

To me all of those individuals are housing advocates.

All of them.

And I think we have to work in coordination to accomplish all this area.

This is a big must.

We know who Ed Robert is, or was?

(Whistling)
One?

Two, three, four, five, six, seven, eight, nine, 10, 11, 12, 13, 14, 15, 16, 17.

17 -- 18!20!

Ed Roberts, Vermont -- you know who Ed Roberts is.

-- hey, stop texting! 

(Laughter.) 
Then I got my 20.

Ed Roberts, tell me who Ed Roberts was.

Anybody?

 It is okay.

You ain't going to get it wrong.

Out of 20 people.

Ed Roberts?

>> ADAM BALLARD: Ed Roberts was the father of independent living.

>> ALBERTO BARRERA: Yes.

He is also for saying -- he said that every individual can live out in the community with support service around.

Anyone.

No matter what type of disability.

And what do we hear from government bureaucrats and politicians?

Oh, there are some people with such severe disabilities, you don't want them in the community.

It is not what I want.

We have to create those choices for them.

I don't want to get them out.

I want to create the choices so they can make the choice themselves to get the heck out of those places if they want to.

That's what we are looking for.

This is what Amber so passionately fighting for.

 For those type of choices.

And that's what Ed Roberts said.

And he was famous for.

And he put into action all his words.

Great man.

Great guy.

And he's our MLK, he saw Martin Luther King.

He is one that we read everything that he had said or quoted or written.

Do you know that he was denied education, higher education at the University of Berkeley, California?

He was -- but his counselor at the department of rehabilitation services of California, they told him that he was not the material to go to the university and get the college education.

The counselor told him that.

Needless to say about 12 years later, he became the director of the educational services of California.

And fired that counselor!  Supposedly.

(Laughter.) 

Hopefully he did that!

And a lot of us advocates that fight for integration housing justice have him in our minds when we fight against this oppressive settings, state institutions, anything that segregates people.

Many of these folks have fought and continue to fight against government sponsored segregation by creating housing silos.

Can someone name me a housing silo?

Or what a housing silo -- what is a housing silo?

I hope you know.

We have a hand back here.

Mic, please!

>> WOMAN: And example would be housing constructed only for people with disabilities.

>> ALBERTO BARRERA: Not only that, the type of disability!

Diagnosed specific segregation.

 Historically we've been segregated not only because we are disabled, but also the type of disability.

HOPWA housing.

What is HOPWA?

Mic.

Mic.

Please, somebody.

>> WOMAN: Housing opportunities for people with AIDS.

>> ALBERTO BARRERA: That's right.

That's right.

 And that silo has been controversial with housing advocates in our community.

During the epidemic of the AIDS epidemic, HOPWA was created and we also called it, allowing hundreds of millions of dollars for housing for people with the disease.

Nowadays, most people with the disability has been able to live with AIDS.

So now the funding from hundreds of million has shrank down to -- I don't have the budget -- less than $40 million.

I think last time I looked during the Bush administration, around 200.

So some of us, and this is where the controversy is, believe that that money should be put, you know, fund to house all the people with disabilities, snot one particular diagnosis.

Other housing silos was the (inaudible) program and in some ways still is.

And we can talk more about the 811 in the afternoon and the afternoon session, but it was also created to create supportive housing for people with disabilities, and that was -- and services were mandated for that type of housing.

As advocates we also evolved, and Ann did a good job a couple days ago on describing supportive housing and how supportive housing should be.

Delink services and house.

Making services a choice of the individual.

 That's what it is.

Supportive housing has been this dark hall in our advocacy work.

We never had a good definition on what it was.

And there still some people that don't know what it is.

I mean they cannot define it.

But no matter how we define it, if it is linked to housing, that's not housing integration, and you are taking away people's choices.

Like I said before, we evolve, we continue evolving advocacy in a way of policy, in a way of organizing.

18 years ago there was a movement against group homes and residences, I think the gentleman here talked about community resistance, and then I wrote a couple of papers in support of group homes in California.

Bonnie Millsteen contacted me, she said, Beto this is going on in California.

This providing fair housing to put people in nursing home and there is community resistance.

So I went onboard.

Access Living went on record.

Years later we evolved.

I said, no, that's not allowable anymore.

And I raised some eyebrows here the first day when I said personally don't want a group home next to my house, not because I don't want people with disabilities living next door to me, because like most of you and like Ann was describing integration, we want people with disabilities to be fully integrated into the community!

And not just be a little pregnant.
(Laughter.) 

This is what we want.

Okay?

So history is very rich, our history in the fair housing movement is rich, and it continues.

I see it was just yesterday and now today and tomorrow is going to -- it is a continued struggle.

We cannot say it happened before.

We are trying to write a lot of us trying to write our memoirs, as a matter of fact why Maggie should be here, one of the reasons, hope to write the memoirs of the disability housing movement.

She wants to take hick purse. -- pictures.

Anybody object she take pictures here?

No?

 Organizers?

Is that okay if she takes pictures?

Yeah?

 Okay.

All right, if you don't mind -- who is going to mind?

Oh, another great guy, person that I have the pleasure working with was secretary Kemp and then secretary Ciscernos.

People don't know who Cisneros is or was?

They were the secretaries of HUD way back -- I don't even know.

When was that?

In the '80s.

Back in the '80s and early '90s when Cisneros, Clinton appointed this person as secretary of the housing and urban development department.

It was Cisneros who opened the door for some of us advocates.

Marca Bristo at those years was the president and director of the National Council on Disability, the NCD.

 And the secretary didn't want to meet with all these advocates.

Marca requested a meeting with Cisneros, met with him, and her only issue was meet with these advocates.

He met with us.

And he says, okay, you come in over here to tell me to get rid of these housing silos, or to redirect some of this funding.

I said, yesterday there were 3 providers that came, each one of them with an individual with a disability to tell me they need more money!

I said, yeah, and you are going to get more, and more!

And are here telling you -- to ask you to create, help us create other choices.

Now if you know Cisneros history, and if you know that and then you will realize why he agreed to continue listening to us and start reforming some of HUD's regulation.

He was mayor of San Antonio for many years.

 I was lucky enough also to work with the united found workers union for 3 years at any much younger age.

I was an organizer, a very passionate person.

I was -- for five or six months.

Cesar was -- I wanted to learn how to organize.

And we had several meetings with Tom Horkin and Cisneros.

The latter was very helpful.

He was a civic minded person.

He administer with integration and justice for the underserved community or whatever.

He was one of those kind of guys.

So we would meet with him every Saturday -- not every Saturday, every 6th Saturday.

Six weeks we would meet with him and part of his staff or directors from each department, and then our group broke and worked with those individuals to suggest new regulations.

He was instrumental in bringing the visitability in some of their NOFAs, notice of funding is available for those housing authorities or those not for profit developers that would apply for funding, they would give them extra points if they would create visitability.

 Making town homes more visitable.

He was very instrumental on that.

He is the one that started the idea to integrate of the 811 program.

And then he was followed by Kuomo, following the same stats, finishing what Cisneros started.

A great guy.

There was another national group that was formed of housing -- fair housing advocates across the country that also made a lot of differences of the group that met with Cisneros, and we also -- a lot of us start working in our local areas with our public housing authorities.

There was a group called, where (inaudible) is the -- DRACH group, disability rights action coalition for housing.

We got together in 1995.

We didn't know exactly -- I knew Eleanor Schmidt, I knew her already because she was an ADAPT activist, so I knew her.

And I knew of Karen Tamley.

I didn't know Becca, Bill, or none of these other people.

And then HUD put -- each year HUD department of fair housing and equal opportunity FHEO, are the ones that conduct these conferences.

The regional person here, the man invited us to be part of a panel to talk about our advocacy issues.

So he gave us a segregated little workshop there.

 At that time we were very grateful to be able to have a segregated workshop.

Right now we wouldn't stand for it.

But back then, oh, thank you very much, Mauery.

 We're going to talk.

So this was in December, -- November or December of 1995.

And we invited a lot of other people that were not necessarily grantees of HUDs FHEO and fifth Hayesing they call it fair housing initiative programs, we invited some people we know across the country.

And we all at this conference.

We -- in our group there was a woman named Susan that has environmental illness.

She was multiple chemical sensitive.

She would have to cross the lobby to get to some of the workshops.

In the lobby in those years everybody smoked indoors.

So there was a lot of smoke and it was hurting her.

Sometimes she would not be able to make it to the workshop.

She would have to get this face mask, the one we use in the riots during the 60s, the gas masked.

And HUD had a bulletin board, news bulletin board with messages on it.

So and so, someone called you.

Do this.

And they also had a little day to day newsletter that would put out to summarize what happened at the conference the day before.

And what was coming out for that day.

And on that bulletin board someone wrote that people with disabilities, if they cannot stand the public environment, to stay home.

Just like that.

 Don't come out if you can't come out in public.

So we were furious.

We were furious.

So we caucused, all the people that had disabilities, we got together and started discussing, what are we going to do about this?

And we had some really radical heads that are from international organization of disabled people, we had people from -- we had all these people there that are good advocates.

There were different ideas of what to do.

Different ideas like send them a strong message, a memo to be read on one of the plenary sessions and whatever.

Then there was this woman named Becca Vaughn that we became very good friends from Topeka, Kansas, together with Bill Hennings and Eleanor Schmidt and Karen Tamley, they said, no.

Let's not allow them to continue this conference.

We have to address the wrong message that was brought to us here, because this is an outrageous.

An outrage.

We are outraged by this.

It is not acceptable.

So we told Marca Bristo and she happened to be in DC.

We explained to her, or I explained to her what was happening.

And I said, our plans here are now escalating to take over the conference.

And she says, I'll be right there! (Laughter.)
 
So I told everyone, Marca is on her way.

Marca met with us.

And said, okay, Marca what do you want.

She didn't say you should do this, you should do that.

She said, what do you want?

So we debated taking it over or what.

I said we want to take it over, we took a vote, we going to take it over, we going to shut them down, and then you are going to go out there and speak during the plenary session this morning and demand we want to meet with Cisneros, he was the secretary at that time.

So some of us had already experienced in blocking entrances and chaining ourselves to doors.

Remember the '60s?

(Whistling) 
All right!
(Laughter.) 

So we come from that type of radicalism so-to-speak.

So it was easy for us to strategize and shut down main workshops and plenary sessions.

And everyone was going, what the hell is going on with these people?

(Laughter.) 

Okay?

So HUD came over.

Maury McGraw, he -- that's her boss.

He was working at this HUD region and he always worked for fair housing and equal opportunity department.

He was like our spokes -- he was like our messenger to HUD, to the organizers of HUD.

And he was giving us -- is that okay to say -- no, I can't say that about Maury right now, but he helped us a lot.

I will say that.

He was very supportive.

So Cisneros was impossible.

He met with us on the phone.

But he said, I'll send Roberto Ocinberg.

 California.

Hey.

Ran for mayor of San Francisco.

Yea! She was then assistant secretary for HUD's fair housing and equal opportunity department at HUD.

Okay?

She was kind of, oh, what do you guys want now?

 Then she started getting it?

And says, okay, so she -- her and Marca went and took the podium and addressed everyone.

Needless to say, everyone apologized.

Nobody took responsibility for that note.

But the outcome of that was great because the advocates that did that action were united.

We continue united.

We formed association for integration.

The national association of -- for integration for people with disabilities, which about a couple months later became the disability rights action coalition for housing.

We start recruiting people across the country.

And we formed this group.

There was one beautiful thing that came out of it.

 The other beautiful thing that came out of it was that on the next notice of fundings available for fair housing education and outreach investigations, investigated discrimination against the disabled people as a protected class was funding.

Now disability organization like ours were able to apply for funding for one or two-year fundings to enforce the fair housing amendments act and to do education and outreach to our community.

Cisneros made that happen.

In 1990 Access Living was the first disability organization that applied for that money and got it.

And so far it has been the last.

 People be talking about history and I have to mention that some people I also respect a lot is the national fair housing alliance.

The National Fair Housing Alliance which I said the director and the president, we have good -- very good relationships, but they opposed no if a -- Nova.

 Nofa.

Because what we are doing is shrinking the money and segregating the fund for particular protected class.

So they were trying to form -- there was nofa did a -- when the NOFA, they were doing the national conference in DC and they had asked me to be one of the presenters on fair housing testing.

I agreed.

With NOFA we also had many friends.

And NOFA's board met and they decided to form a delegation to go and complain about this NOFA to then secretary -- Mario Cuomo.

Nothing is kept secret.

Everything leaks.

Someone on the board met with me and my friends that are involved in the disability housing movement and told them what was happening.

So at lunchtime they were growing to announce this delegation was going to form, and then at 2 o'clock they were going to march over to HUD headquarters to present the written complaint.

Now what happened afterwards is that they had invited senator Paul Simon.

Senator Simon.

Yea!
Who remembers?

All right.

The bow tie guy.

 Remember him?

Cool guy.

Very progressive.

Very liberal senator.

And guess what?

Good friend of Marca Bristo!.

So when there was doing the seating for the lunch, this was like senator's table, they asked me, would you like to sit on the senator's table?

I says, hmm, yes.

(Laughter.) 
So they sat me next to the senator.

And senator were, oh, he had this beautiful deep voice.

I said, you know, I work with Marca Bristo.

Oh, Marca?

Good friend of mine.

You tell her that I said, hi, and I wish her well.

(Imitating the senator's voice) 
I said, yes, sir.

You know something that is helping here that I want to make you aware.

Okay.

So told him what was planned.

He called someone, said something under ear, and nothing was mentioned about a delegation or anything else.

None.

And we met right after that, that week I stayed in DC and brought some people like Karen Tamley, Becca Vaughn, Bill Hennings, some people from Phily and we went to meet with Cuomo and congratulated him and thanked him for putting this statement, or this set aside for fair housing for people with disabilities.

So after that we start building more better relationship with NOFA which we still have.

So -- how much time do I still have?

Jeez, I've been talking a lot here.

>> AMBER SMOCK: 15 minutes.

>> ALBERTO BARRERA: 15 minutes?

I wanted to get you involved.

And we are going to be talking quite a lot more on things that we have done.

But everything that we have done as advocates for this movement, we haven't done alone.

Marca said last night, you have to be in the forefront of this.

You have to get out of this box.

You have to move over.

You have to create these changes.

You have to take these on a financial level.

And when you see something wrong, you got to speak out.

And I have been following this, sometimes I get in trouble for doing that.

I said, you told me, Marca.

 But -- she's a great leader.

So we have had a lot of assistance from inside departments within HUD, Bonnie Millsteen, Sarah Pratt, Maurie McGraw.

Those are people that put their jobs on the line.

To help us change some of this oppressive regulations at HUD.

Then we bring it to other departments.

Betterance.

And we formal lies.

We form partners.

We look for those career people and we start forging partnerships.

We don't do it alone.

We bring the big stick, we bring the vision, we tell them how we going to do this.

I don't want to meet with you to tell me you can't do it because it is not policy.

I need for you to tell me how we're going to work together to change that policy.

Or else let's not meet!

I want to work with you.

Let's work together.

The idea of this (inaudible) is come to change they don't want you to speak, they don't want compromise.

 You are right, we don't want to compromise.

Because our lives are at stake!

People are dying in these institutions, and we know it.

Those are the ones working that be and work in nursing homes know it.

So we are passionate, yes!
Do we compromise?

No!
Because we're not little pregnant!

We want full integration.

The integration that Ann was talking about a couple days ago, that's what we are looking for.

We want to live like you, like you, like you, like you, like you, like anyone else in this room.

In the same settings.

 With the same choices.

We are not here to eliminate the choice.

They don't get it.

Oh, they are here to blow all these -- close all the institutions and nursing homes that people really need.

No, we're not.

No.

We want you to give us some of that money so can live integrated in the community.

Remember our struggle with transportation before the ADA and after the ADA?

Oh, they want to get rid of all special transportation.

Door-to-door.

That's what they are looking for.

That's why they want all these buses accessible.

And what is going to happen?

Those people that cannot take the bus are going to end up staying at home all the time!

No.
That's not -- who we are.

In Chicago it took 20 years for our whole fleet to be accessible.

And special transportation has increased, more than 200% since then!

Who was wrong?
Who was right?

But we need -- we had a hard time in Chicago during the transportation.

Our strategies as advocates we fight on all different fronts.

We have our lawyers, that sometimes they get a little hot headed and they want to take over our movement.

No.

You are -- you work for us.

You work for the movement.

They were very instrumental in Chicago to make our fleet accessible in a couple lawsuits.

Okay?

And then we have the people, the bureaucrats I call them, the progressive bureaucrats or liberal bureaucrats within those departments.

Then you got us advocates that fight them in the streets.

So we have different levels for doing that and strategies.

And the hardest message to the public is that we are fighting for choices and not to eliminate choices.

We going to talk a whole lot more about this in the next couple -- and today, the rest of the day and tomorrow.

And I hope you all -- I hope you go back, go back now that you are fighting to get people out, that you realize that there are other things that we have to fight for, like Marca was saying.

We have to work or unite locally, statewide, and national in order to bring this message forward.

We need this new generation of advocates.

Everyone in this room is an advocate.

Because housing is in whatever you all doing here.

Everything you do there is a part of housing that you are doing.

And that's great.

So I just want to say that if you have further questions, if you have -- want to meet individually either in person or by phone or follow up, you can give anyone myself, Amber or one of the organizers a business card, put a sticker on today's date and the issue up want to talk more about it, and either myself, Adam or someone will get back to you, or meet with you at your home states or your localities.

We are very happy to do that.

Okay?

Also a lot of our materials are on the Internet?

 Where are they?

>> ADAM BALLARD: ILR Wiki has more information on what we covered.

Check IRLU Wiki and there is documents that will supplement what you are hearing this morning.

>> ALBERTO BARRERA: Again, thank you for coming.

 Let's have some fun.

Okay?

Stay away from those tall margaritas.

(Laughter.) 
Save that for the weekend.

Those of you that want to stay another more time in Chicago, you can contact us.

We'll be tourist guide.

Chicago is a beautiful city.

And a lot of things to do.

Very accessible city.

Thank you very much.

(Applause.) 

>> AMBER SMOCK: So just really quick because we have a couple more minutes.

I want to emphasize one of the things that I hope people are taking away from Beto's presentation, is when we at Access Living are working on housing issues or we have consumers come to us or call us and say I need a place to live, it is really easy to get ground down by that constant need.

 Right?

Like people need this.

People need this.

 Interest is not enough available.

Oh, my God.

So you start feeling very weak and like you can't find a solution and you don't have enough energy to just get this person a place.

You know?

As you are doing that work, it is incredibly important to have the relationship that keeps you strong for this.

Right?

So Beto talked a lot about relationships and I think that's really important part of doing housing advocacy.

What he said about doing it not alone is also important.

But I think at Access Living something that gives us strength to do housing advocacy is knowing the history of the housing work that's been done by the movement over the last 30 to 40 years.

We know that people have been working on this for decades, right?

And we can't let them down.

But just because we're facing like, oh, my God there is all this tradition, and oh my gosh there is a lot of need, turn that into your strength to come to work every day and find a solution.

We wanted to kick off this 2-day part with a talk about that so we can kind of keep kicking butt and fighting.

So thank you, Beto, for giving us all this information.

As he said, feel free to contact one of us or just come on up and all that.

In the meantime, I think that our next session starts at 10: 45.

I know we're ahead of schedule, you want to go ahead and go to 10: 45?

>> ADAM BALLARD: We'll take a little longer break if that's okay for everybody.

Longer break?

Awesome?

 Oh, my gosh!
Okay, great.

Let's meet back up at 10: 45 and Beto and I will take it away with making your voice heard.

Okay?

Thank you.