MIKE BACHHUBER: So thanks, everyone, for getting started on your plans.

We want to make sure that we can do all of the kind of technical steps in closing up the training, get out of here in time so that you all can go about the rest of your business that starts when we leave here.

So we're going to try to pull some of this together, but first I wanted to introduce Paula from ILRU.

She is a technical assistance for centers and SILCs as part of the IL-NET project and she would like to talk a little bit more about what kind of help she can provide.

PAULA MCELWEE: This is just real quick and brief.

But there have been a couple of things that came up during this conference that are very common questions that I get from CILs and from SILCs, one of them had to do with the 704 report.

And you know, there's a lot more complicated discussion that could happen around 704 reports, but some of your states are requiring the kind of detail that was described yesterday in your I&Rs, but the feds don't require that.

So unless your state is requiring that for your information and referral, you don't have to do it at that place.

You have to do it if people go on and receive other services, so it's an interesting mix, and I can help you sort those kinds of things out.

Another thing that was mentioned was the board, how the board is recruited, what kinds of problems happen in nonprofits and I can't tell you how much time I spend, but I really can provide your board with very good resources that are on our website that are training resources that you could work with your board on.

So if there are things that help the board to know what their role and responsibility is, if you'd like training on how to recruit board members, there's specific training to recruiting good board members.

Those are the kinds of things that we have on our website that I can help you access, or you can call or e-mail me and I can help you in that way.

So I've got my cards here.

I'm going to come around or you catch me, if I don't get to you, and feel free to pick one up.

You can call any time because I lock my phone up at night so I won't wake up.

[ Laughter ] I live in California, so those East Coast calls at 8:00 your time are a little early for me.

Just a little.

So anyway, but go ahead and feel free to use that contact information.

We provide individualized training to you by phone or e-mail or through our website, and I can link you with people, I don't know every answer but I can link you with somebody who does know the answer to the question you're asking.

So, as it goes with CILs and with SILCs, we'll be glad to help you any way we can.

MIKE BACHHUBER: Thanks, Paula.

So you may have noticed that in one of the PowerPoints we had e-mail addresses for the whole team, and I wanted to remind everyone that the staff is going to send out a list of participants to everyone who was here, so that should have, again, all of our e-mails as well as phone numbers.

I think if people have questions, Paula is not a bad place to start.

I will not be offended if you send me an e-mail or give me a call either.

 And I think that other members of our team have expressed that willingness, so Ruthie is raising her hand, so certainly she's one of the people who wanted to offer that.

And we will work, either directly with you or through Paula or other IL-NET staff to provide further technical assistance if you have questions as we go along.

So do folks feel like you were able to put some things together that might help you improve the services at your center as part of this exercise we've gone through for the last half hour, hour?

Okay.

Would anyone like to report back on some of the things you came up with, either for yourself individually or group at your table or people from your center?

Because be happy to see if we can learn from each other here at all.

Okay.

Well, I'm going to share, because I was going around and talking to people at a few of the tables, and one of the questions that came up that may be a common question, so I want to talk about it a little bit, is you know, I'm an IL coordinator.

I'm an IL specialist.

And I don't think my boss will be very open to developing things as, you know, that we've learned here.

So you know, what can I do that might help me with that?

And I had a couple of suggestions, and some of you in the audience may have some additional suggestions, so I'm not going to say that I know all of the answers, but you know, some of the starting questions are ideas, are to, you know, start a conversation by reminding them that they've spent a bit of an investment in sending you here for the last few days.

And I'm sure you'd like to see something come out of that investment.

Another idea is instead of, you know, maybe asking for all of the things in the plan that you've been working on to be adopted to, you know, maybe just ask for an hour or two of their time, and to talk a little bit about what you learned here.

Maybe you are going to want to ask for some time at a staff meeting to talk about some of the things that you learned here.

I also asked some of the other folks at tables, well, do you have any ideas, and came up with a few more good ideas.

So one of the suggestions was, see if your supervisor or if the executive director will have a lunch with you, get away from the office.

Sometimes if you get someone away from the office, they can be more relaxed and more receptive to that kind of discussion.

Another suggestion was, instead of trying to come in there with your list of changes that need to be made and trying to sell them on your ideas, if you can start the conversation with the idea that you want to explore some ideas with them about what you've learned for the last few days.

And let them interact with you to try to come up with a solution and a plan that will work for your center.

Don't forget to point out what exists at your center.

You're already serving people with psychiatric disabilities.

You're already serving people probably with brain injuries and related disabilities.

Point those things out, and how do those relate to what you've learned here, and what you'd like to see accomplished at your center.

And finally, the last good suggestion, I really want to thank Jim because he was very helpful.

Don't forget that no means no for now.

No may not mean that we can ever do this.

Your executive director probably has their own plans for things that they want to see happen in the next month, the next six months, the next two years, and maybe what you want to talk about doesn't fit in with those plans right now.

But it doesn't mean that six months from now it might not fit into the plan, so don't be afraid to come back six months later if you get a no, and say, what about now?

Can we talk about this now?

And maybe start this conversation?

So those, it's not going to solve all your problems, but some ideas on how to get to the next steps at your center.

So we, any other ideas that people, go ahead.

AUDIENCE MEMBER: Well, seeing as my executive director was here, we don't have that as a barrier, but we do have one board member who is part of mental health partners, which is like the community mental health, so one of the suggestions that I put down, we'll have lunch with her and explain one of the techniques that I really appreciated from this presentation was that those that have mental health in their title are very scary and can be very daunting for those that have experienced trauma within that organization, and let her know, those are the individuals that want to go to mental health aren't the ones we're targeting.

We're targeting those that are afraid to go or don't want to go, and I think that will eliminate some of that fear for her, that, oh, you're taking away some of our territory or whatever, because we're actually serving an area that you're not serving, and I think that will go a long way.

So DANIEL FISHER: I think that's an excellent point.

Very good.

Yeah, it's, I think one of the niches that independent living centers can fill the best is just the one you've identified, is for people that, maybe, another way to look at it is, people who are further along enough in their recovery that they need more of the independent living philosophy, and more contacts outside of the mental health center, because clinicians are restricted in what they can do in terms of linking people up with, you know, social services or with self-help groups or, so it's both people who don't want to go back to the mental health center and people are trying to leave the mental health center too.

RUTHIE POOLE: I love that idea.

And part of it also, most community mental health centers don't have peer specialists.

I hope we didn't make it sound like peer specialists are, like, really common in the field.

It's really uncommon in the mental health field, peer specialists.

Like most providers will go, well, what's a peer specialist?

It just, it's totally uncommon.

So what, and what Dan just said, it's like light dawns on marble head for me.

Not only people who are further along, you can't get peer support at a community mental health center.

You can get it at an independent living center.

That's one of the core services.

And so, that's another way to frame it, folks are coming to us for peer support.

They go to you for clinical support.

Like I don't go to my therapist for peer support.

I go for clinical support.

I go to my local recovery learning community for peer support, or if it was my local independent living center and you guys' case that's where I would go for peer support.

Sometimes you want to go to a cross-disability peer support group and sometimes you want to go to one about your own disability, so I think, like to sell it, what you said was really brilliant, because it's, like, we so complement each other and it's not necessarily that people will go to either or.

I go to both.

I need my clinicians.

And so I choose to go to both.

I'm one of those people that needs all the support I can get and that's very often people who are social.

It's all the support we can get.

So I think that's a great way to do it.

AUDIENCE MEMBER: There's a business practicality to this too.

And I'll speak from Indiana.

If someone is trying to get an appointment at a community mental health center, you're looking at weeks before they can be seen by someone.

There's a wonderful immediacy about centers for independent living, and our ability to see folks almost right away.

And I think that's something that is an important niche for us to never lose sight of.

MIKE BACHHUBER: That is a great point, and one of the tables that I was talking to, people were concerned about access to housing, because that tends to be a crucial need for a lot of folks with severe disabilities, and the same issue is true there.

People might get on a waiting list for housing that they can afford rather than actually get into housing right away.

And then we have to start thinking about, what can we do at the center to help them while they're waiting?

So did anyone else have anything that you wanted to share about your planning, your discussions?

SARAH LAUNDERVILLE: So I'll share about my own learning.

Whenever I come to conferences like this, I really like to look at my own personal space and where I want to do some personal learning as well, because then it doesn't limit me and if I get a no from someone within the organization, I can still do what I want to do next, right?

And so I have taken away so much from this, these last couple days, and really putting stuff together, but really thinking about when I'm personally presenting around my own experiences to not invalidate other people's experiences, right?

That just because I had some traumatizing experiences within the hospital system, some other people have had really, really good beneficial experiences from a hospitalization system, right?

Those are all the things that we need to validate and we've talked, I've said earlier that we have in our coalition meetings some conversations about people not feeling like they're peer enough or that they really live up to these high crisis situations but they're a part of our movement and when we don't acknowledge and have those dialogues around that, then we're leaving a whole group of people out, and hopefully the majority of people coming into our system, as time goes on, are less and less people who have been traumatized by a system and hopefully that's what's happening, so we want to make sure that we're having dialogues around all of our experiences being good enough, right, to be part of our movement, and having the dialogue about what needs to change, what doesn't need to change, so we can come to more commonality around that, so I think it's, I appreciate the people who have helped me around that learning as well, so thanks.

DANIEL FISHER: I'd like to second really what Sarah said, and I've learned so much from you all and also sort of your willingness and interest in learning more is really terrific, and very touching, and you know, we've, many of us have been in this consumer survivor movement for so long that we just assume that everyone knows about it.

And that's, we're a lot of times in a bubble and we don't know that a lot of people don't know about what we do or what we've been through, so it, to open up in a way a whole new sort of vista of people who are philosophically so close.

That's what's sort of been puzzling to me, is when your values of the independent living movement and the values of the consumer survivor movement are so much around self-determination and choice, I'm now, I'm understanding more the, one of the major barriers is that misunderstanding that we actually do recover and we can run our lives and that we represent ourselves, and that's the interests that you all have as well, so getting out and meeting each other, I would just underline these lunches I think are a great idea with your local consumer survivor leaders and you can contact our center, the National Empowerment Center or myself directly and I'll make sure that you're linked up with them, and give you a name and I can also call them ahead of time and say, you know, take this phone call, please.

Because you know, in this day and age, a lot of people get contacted and they don't know who this person is, like, they'll go to the bottom of the list, but we can put you up to the top of the list, and really, and I say it's a 2-way education, you'll educate them about what independent living centers do and offer, and they'll educate you about recovery and self-help in the mental health field, so, I don't know if this is my concluding remark, but that's about where, what I would share.

Thank you.

MIKE BACHHUBER: So just some other kind of parting thoughts as we're trying to sum this up, will come from Ruthie.

RUTHIE POOLE: I wanted to thank people and how grateful I am.

It's like coming home, because where I started in the disability rights movement was at an independent living center in 1989, and you know, then I, eight years ago I moved on to a totally mental health peer run organization, but I have always felt real allegiance to the independent living center movement and really learned a lot from my brothers and sisters with other disabilities and learned a lot about their incredible generosity.

I'm going to give Bob a shout out here because he was incredibly generous when I was asking him some stuff about blindness that I just didn't know and he was incredibly generous about this and I'm very grateful to that and I also, my parting thought, Dick Poole, one of the wisest people ever and he's looking down and smiling at all of you from heaven right now and he said to me, my Dad had polio in '48, and had to leave, he had to leave University of Michigan for a whole year.

My Dad was one of those people, he had lived through the depression, and World War II, and so that generation never complains, ever complains.

You know, he lived for 25 years with torn rotor cuffs but he wasn't going to use a wheelchair, he was going to keep using his braces.

I was all excited about my new job at NILP and I'd been there a short time, two years, and this thing called ADA passes.

And I'm really, really excited, right?

There's a, they're going to give Justin Dart an award in Boston and they're going to give an award to George Bush, which I thought, what?

He just, you know, I learned civics.

He just signed a law, because brave people with disabilities and their allies lobbied for it, for years.

Like why are they giving him an award?

So Nancy was coming down from Kennebunkport, I guess that's his sister, and this is the first Bush, coming down, so he comes down to Boston, and Justin, we protested that they were giving an award, and I think probably some of the, hopefully none of the people in the room from Boston were inside the hotel, because none of you were outside with me, and it was a cross-disability protest and just little but we got a little press, because it was a Sheraton.

We were chanting, the ADA belongs to us, the ADA belongs to us.

So Justin came out and marched with us, which was really, really cool.

And so we said, you know, we're not protesting you, of course, we love you.

He says, No, I get it.

You're protesting George Bush, and so we also were kind of pissed at our friends who were giving this award.

I don't know if, they weren't my personal friends, let's put it that way.

I tell my dad this whole story, right?

I said it's really cool, Dad, the ADA passed.

Did you know that there's 43 million Americans, the biggest, my dad was an activist around civil rights, around gay rights, around anti, anti-Semitism but he'd never been an activist around disability rights, so I never thought about him as having a disability.

Because it's not how he defined himself.

So I go, Dad, 43 million people have disabilities in this country.

It's the largest disability group.

And my dad's only comment was, if we only got organized, think how powerful we'd be.

MIKE BACHHUBER: Thanks, Ruthie, that is great.

What I was going to say, I kind of feel, you know, kind of take away from that direction, so let me just say, we all have different roles in our centers.

We all have different roles in our communities, and for some of us, we may see it's going to be difficult to make change happen based on the primary roles that we work with.

We will continue to be happy to consult with you.

I think a lot of you are going to be continuing to think about this plan you've been working on for the next, or for the last hour, and so don't see it as, okay, I'm done now.

This is a work in progress.

If you think that your center has work to do, it might become ongoing work for you in your life.

Certainly for some of us, it's ongoing work in our lives, and in our jobs.

And I think Ruthie kind of did a good lead in to one of the issues I want to bring up.

In IL, I see IL we begin and end with advocacy.

Peer support always has to be there.

But IL is not IL without advocacy.

And in mental health systems advocacy does kind of go alongside providing services to people with psychiatric disabilities, so I'd like to encourage you to be more involved in that area.

There are issues going on every year in most states related to commitment processes, involuntary treatment, abuse, seclusion, and restraint by mental health providers, schools, and others, and there are folks in your state working on those issues, and it would be great if you can connect up with them.

There are also issues going on in Washington, DC, related to mental health services that need work.

Representative Tim Murphy from Pennsylvania introduced a really horrible bill in the last Congress and is expected to reintroduce it next week.

That bill would reduce the right to health care record privacy for people with a mental illness diagnosis.

It would reduce the availability of protection in advocacy system, advocacy.

It would prevent the federal health care agencies, SAMHSA, from providing, or supporting peer-run services around the country.

There's just all kinds of awful things in this legislation, and NCIL, among other things, works on that, so it's an opportunity to plug in with your colleagues across the country.

NCIL has a mental health civil rights committee that works on these issues.

And I think, unless people have any other comments or questions you wanted to add, that is, concludes it for our training team.

Thank you very much.

I always learn from these as well.

You guys have been great to work with.

And thank you for coming and working with us for the last few days.

[ Applause ]