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Quality Mall Chat

Community Imperative Chat Transcript

Below is an edited transcript of the February 11, 2002 Quality Mall Chat session on California's Community Imperative Conference. The discussion was led by Steve Taylor, Director of the Center on Human Policy at Syracuse University and Mark Polit, President of the California Alliance for Inclusive Communities. The transcript has been edited for readability.

<Moderator> Good afternoon and welcome to the Quality Mall chat session on California's Community Imperative Conference. Our format today will be a moderated discussion between Steve Taylor and Mark Polit. Questions and comments from audience members will be screened by the moderator and posted for a response from Steve and Mark as time and subject matter allow.
<Moderator> Because this is a moderated chat session, you will only see the names of the special guests (Mark and Steve) and the moderators listed on the right hand side of your screen
<Moderator> Steve would you like to give us a little background about what the community imperative is?
<Steve Taylor> Sure. The Community Imperative was written by the Center in 1979. It was the inspiration of the late Burt Blatt. The purpose of the declaration was to counter the professional "backlash" to deinstitutionalization and community living at the time. We reissued it because community living remains controversial in many states and localities (including California).
<Moderator> Thanks Steve. Mark, why was this a theme for a conference and why was the conference held?
<Mark Polit> The theme for the conference was "The Community Imperative". This is why we considered it so important for CA. The CI declaration is an unambivalent statement of people's rights and values. In CA policy makers and advocates are not clear on the future of our system. We need them to be clear - or we will remain in our current predicament. We have a well funded system of large state institutions and an impoverished community system. If we are going to strengthen the community system we need to phase out the large old institutions and focus policy makers on where people live in their own communities.

<Angela Amado> Steve, do you want to share some of the highlights -- like who attended? how many people were there?
<Steve Taylor> The conference had a large and diverse audience (with good representation by self-advocates and family members). There were probably 700 (perhaps 1000) people there. We let anyone come who wanted to (the registration fee was $35, but we waived it in request).
<Angela Amado> Did many policy makers attend?
<Steve Taylor> Yes. Mark could speak to this, but we had the head of CA's DD system there as well as one of the key members of the CA Assembly. Others were probably "lurking."
<Mark Polit> The conference was intended to clarify that, get people excited about the possibilities and to get people connected with each other for action. There were several who attended. And almost everyone with significant influence in CA attended or was represented there.

<Moderator> What will the outcomes of the Conference be toward closing California institutions? In other words, what difference did this conference make?
<Mark Polit> We will have to see. The conference achieved its goals of having people inspired and re-energized.
<Mark Polit> Also, we asked people to commit to something personally. Some action that would further the vision.
<Mark Polit> Having hundreds of people do this will have a profound influence on policy. But we will just have to see how it rolls out in the next few months
<Steve Taylor> As I mentioned at a conference pre-meeting, it's difficult to evaluate the impact of a conference. Time will tell, I suppose. The way I view the issue of segregation versus inclusion is that it's a bit like eating an elephant. You have to do it one bite at a time. I think we took a good bite out of the elephant.
<Moderator> Two new related questions: 1. What effect did the Community Imperative Conference have on participation/membership in CAIC (California Association for Inclusive Community)? 2. What were specific action plans that came out of the conference? Plan deadlines? Membership goals for CAIC (California Association for Inclusive Communities) over next 6 months? CAIC, Community Imperative, position on SEIU, i.e., position on community care workers being organized?
<David Wetherow> The key will be in making a sustained follow-up effort ... early contact, sustained contact.
<Mark Polit> CAIC has 60-70 new members as a result of the conference. This is a good outcome. We have a few thousand to go this year.

<Angela Amado> How about the question about specific action plans?
<Steve Taylor> I'll chime in. We had pre- and post-conference planning meetings with reps from many CA organizations. Many of the action steps were discussed there. The conference itself was designed to motivate people and to demonstrate that many people in CA (with national support) are committed to inclusion for all.
<Mark Polit> Art Bolton, the person who wrote the Lanterman Act in CA made an impassioned plea for the attendees to organize the voice of the 180,000 people with disabilities and families for political action. He said CAIC was the vehicle to do this. We are now organizing to accomplish that task.
<Mark Polit> CAIC will also be organizing a post conference meeting of leading advocates to address three major policy issues that came out of the conference.
<Bonnie Shoultz> And I think that CAIC is now in position to be the one CA organization to whom policy makers and advocates, parents and people with disabilities, will turn for advice and action on these issues.

<Angela Amado> What were the three major policy issues?
<Mark Polit> Major issues (1) Assembly Bill 896 which would phase out most large state institutions and keep their operational funds and assets in the DD system. It is up this spring. Sets the stage for a healthy and progressive DD system.
<Mark Polit> (2) The state has $1.4 BILLION of state funds that are not matched by federal dollars. So if CA can get that match, we would have $1.4B to add to the community system
<Mark Polit> (3) The state is considering closing one large institution. We need to keep those operation funds and land assets in the system. The state of course, just wants to save money.
<Steve Taylor> The issues Mark raises are important ones. What the conference did, I believe, is that it refocused attention on these kinds of issues (as opposed to "defending" the community service system, in light of organized opposition to community living).

<Julia Biersteker> Is part of the reluctance to close institutions have to do with costs, or lack of political will?
<Mark Polit> Lack of political will. Lack of organization of the community voice, the consumer voice, and the power of the government employee unions.
<Steve Taylor> Can I go back to the part of the question about organizing community workers? I believe that workers in community agencies have the right to unionize. Where this becomes tricky is that many of us are promoting direct funding (self-determination), self-directed personal assistance, and similar schemes. I'm not sure where unionization fits with these.

<Ann P> Did people from the mental health system participate as well as people from the DD system?
<Mark Polit> The focus was DD. But we had a MH advocacy group included in the Pre and Post sessions. The cross disability voice was represented there.
<Mark Polit> The Pre and Post had a very strong cross-disability influence. The Post conference agreed to develop a cross-disability coalition for lobbying in Sacramento.
<David Wetherow> Aging (AARP?) and physical disability (World Institute on Disability) were represented, as well.
<Mark Polit> Yes AARP was there.

<Moderator> What strategies are you using to share the goals of California's Community Imperative with a larger audience, with people outside of the advocacy/disability rights circle?
<Mark Polit> This is what CAIC is all about. We are developing our legislative advocacy capacity, media advocacy, research and analysis and grassroots organizing.
<Steve Taylor> Well, we'll be developing a video based on the conference as well as related materials. The question of how to reach people outside of advocacy and disability circles is a complex one. Especially in these times, people aren't that interested in disability issues. This is a constant struggle for us. The Center tries to do this through the general media (press conferences, editorials, and such) as well as developing educational materials (e.g., posters, media) for outside audiences.

<SusanO> When the community imperative was first initiated where did the originators think we would be at this point ? Does reality measure up (because there have been some positive changes)? Also what happened that people didn't expect?
<Mark Polit> The conference was an over-the-top success. But again, too early to see system changes. The conference was about increasing our capacity for systems change.
<Angela Amado> Steve, do you agree it was an over-the-top success?
<Angela Amado> Steve, What do you see, as a non-Californian?
<Mark Polit> One surprise was who showed up. I had expected that the established statewide coalitions would see how they would benefit from such a conference and that they would get tons of their people out. But the response from existing organizations was modest. Instead, people from all over CA answered the call. The call to create a turning point in disability policy in CA. WOW. People power.
<Steve Taylor> Responding to Susan O., I think we felt our way with the conference. When we started we weren't sure where we would end up. Things came into place over time (2 plus years planning). The participation in the conference was probably unexpected early on. Plus, I was surprised how many different people representing different groups came. An example is the union that wants to represent community workers. Surprises at the conference itself was how many great talks (or performances--Cheryl Marie Wade) were given. I knew many of these people were good, but they out-did themselves.
<Mark Polit> I agree with Steve. The people on the stage were inspired.
<Angela Amado> Steve, I think Susan's question was about the Community Imperative itself. It was declared in what year? Where do you think we are with that overall, not just in California?
<SusanO> Thanks for clarifying Angela!
<Steve Taylor> The Community Imperative was written in 1979. We had several hundred individual endorsers. Today, after reissuing it, we have well over 100 *organizational* endorsers, including major professional, family, and disability organizations. This shows that those who defend institutions are in the small minority.
<Mark Polit> Bringing the CI to CA helped organizations and folks here reflect on the need for taking a stand and what that stand should be. It was really helpful.
<Steve Taylor> We've made tremendous progress since 1979. Institutional populations continue to decline. A growing number of states no longer have public institutions. However, I'm concerned to day about what is being done in the name of "community." Much of it is inconsistent with the values in the Community Imperative. We have mini-institutions and segregation in the "community."

<Angela Amado> Question from a participant about whether California institutional residents are more expensive to serve (than any other state?) -- more medically fragile, more several behavioral/psychiatric problems?
<Mark Polit> I don't have the stats with me. But I do not believe we stand out from the ordinary in any of those categories. Maybe a little on the expensive side ($165,000/year per resident)
<Angela Amado> Is that the institutional cost per resident per year?
<Steve Taylor> There's no reason to believe that people with developmental disabilities in CA are any different from those elsewhere. There's just more people in CA to begin with.
<Mark Polit> However, in CA 25% of the DD budget is spent on 2% of the people in state institutions. The per resident cost has gone up 11% per year in the last four years, while the community system languishes.
<Mark Polit> Yes, institutional cost per resident per year is $165K
<Angela Amado> Do you have any idea, Mark, how those percentages compare with other states?
<Mark Polit> Nope.
<Mark Polit> But CA has the highest disparity in the US between what direct support staff earn in community settings and what they earn in institutions. The average DSP in institutions earns 2-3 times what a community worker earns.
<chuck> The national average cost in 2000 was about $115,000 per person per year for state institution residents.
<Mark Polit> Thanks, Chuck. So we are high.
<Steve Taylor> I'd add that over 3,700 people with developmental disabilities remain in CA public institutions. Many others are in nursing homes or large private institutions.
<Ann P> 3700 residents is not a lot for a state with over 30 million population--the people still left there are more complex than those in states that have not down-sized, and therefore are more expensive.
<Angela Amado> Chuck, do you agree with Ann's stats?
<Steve Taylor> On Ann's question, from 1980-2000, CA ranked 35th among the states in institutional depopulation. New York is another large state. Things are far from perfect here, but NY has done a much better job at moving people into the community and closing institutions (yet our community service system can be much better).
<Ann P> Texas may very well have the most still institutionalized--I heard a figure of 4000 this week, with a smaller population than CA.

<Angela Amado> We want to give Steve and Mark a chance to chat with each other about how you feel about the conference.
<Steve Taylor> Well, Mark and I have been chatting for years about this. My overall feeling about the conference is that "we actually pulled it off." We built it and people came--and were energized. I must admit we had anxious times in the planning where we didn't know what would happen in the aftermath of Sept. 11 and with pending state cut-backs in agency travel funds.
<Mark Polit> Yes, we are pleased with the outcome. BUT BUT BUT, there is SO MUCH work ahead of us.
<Steve Taylor> Don't remind me. I may have to move there.
<Mark Polit> Fortunately for Steve, it is up to CA to carry on. Though we have talked that our partnerships with the Center on Human Policy will endure.
<Mark Polit> The conference itself, focused on more than large state institutions. The CI today is really about moving on and creating the conditions and supports for people in community settings that will allow people to pursue a life of meaning and value as part of their local communities.

<Angela Amado> Steve, we wanted to give you a chance to share more about the mini-institutions and quality of life in the community. Do you mean like, 4 bed group homes? or larger? What direction should the community imperative go in, in terms of not just closing institutions but impacting the quality of community life?
<Steve Taylor> I think about this all of the time, Angela. I believe in more individualized approaches than we see in most places today. Self-determination is a drop in the bucket compared to congregate settings. I feel depressed when I go to some group homes (yes, as small as 4). People are lucky if they have a weekly field-trip to the mall. That's not inclusion.
<Bonnie Shoultz> And when they do go to the mall, it's in a group! Whether or not that's what you wanted to do that day, that's where you go.
<SusanO> It definitely seems to me that closing institutions is only one small part of a meaningful community imperative. We have "institutions" as small as 1 person apartments when you get down to staff, agency, and community attitudes.
<Steve Taylor> I agree with Susan. I have indeed seen "one person facilities" that operate like institutions. People still have no control over essential things in their lives (e.g., daily routines, going out of the facility, etc.).
<Mark Polit> Agree with Susan O. We need to focus on people and not institutions. Yet in CA and many other states, we cannot effectively get to that conversation because policy makers look towards institutions for solutions.

<Moderator> Here's the last of the advance questions that we received: In our state (Maine) the one state institution for adults with mental retardation has been closed. We are currently exploring ways to help people who moved from the institution to be more fully included in their communities. Many people are still living isolated lives with limited social skills and limited opportunities for involvement with typical citizens. We are planning a state wide conference on this topic, with some regional follow up, and welcome ideas on useful ways to approach this topic.
<Mark Polit> Carry a big vision. A vision of humanity. That's what I really learned out of our CA conference. We have to lead with a vision of humanity and the rest falls into place a lot easier and with more enthusiasm
<Angela Amado> Any other suggestions from anyone about ways to approach this topic, what kind of conferences are needed now?
<Steve Taylor> Yes, Maine closed the Pineland Center (that was its name, correct?). I suspect that at least some people in Maine are still living in congregate facilities. Nursing home placement is a big issue in many states as well (not sure about Maine). So I wouldn't lose sight of the need to continue to discuss the segregation vs. inclusion issue. That said, I would also focus a conference on person-centered planning, self-advocacy, direct funding (self-determination), etc. and the complexities in making those approaches meaningful to people.
<Mark Polit> Otherwise, perspectives from other states, especially exemplary efforts. That worked for us in CA also. Doesn't matter what size the state is, we all get really provincial. Need inspiration from the outside - examples to show what is possible. Part of aiming high.
<Steve Taylor> I want to pick up on what Mark said. The Community Imperative declaration (and the conference) had a focus on essential values. Our values sometimes get lost in technical details about how to do things.
<Angela Amado> Do you mean, mark, that those "Californians" were actually OPEN to listening to people from other states?
<Mark Polit> Sorry to shoot down a stereotype. But yes, I believe so. It helped that the stats presented by Lakin and Braddock were so humiliating.
<chuck> CA's state institution residents are not much different in the aggregate characteristics. The proportion of CA's State institution population as a part of the whole state's population is a little less than the national average.
<Mark Polit> Part of our challenge in CA has been to really believe that the status quo doesn't have to be that way. And we did learn from folks from outside CA.
<Steve Taylor> I agree with Mark that speakers from outside of CA were very well received. It did shake up a mind-set there (we have the same in NY) that CA can't learn from others.
<Angela Amado> In terms of values getting lost in technical details, I think that even some of the support being provided under the name of "self-determination" is not inclusive.
<Mark Polit> You are right, Angela. Human support happens one person at a time - and it is done by humans. We need to always try and improve what we do, one person at a time. Systems change has to create the framework where that is supported.
<Steve Taylor> On the comment about self-determination, definitely yes. People in this field have a tendency to latch on to the latest new approach. I've seen this happen with person-centered planning around here in Central New York. People go through the motions. But the person-centered plans end up looking a lot like the traditional habilitation plan.
<SusanO> I think sometimes it's really important to see that families and advocates see the possibilities. Many times they can be a barrier because they have learned to "settle" for institutional focused supports and then that leaves support people with ideas and enthusiasm stuck because people can say "well that's what the person wants" in defense of less than what could be..
<Steve Taylor> On Susan's comment, families, people with disabilities, and advocates do have to see the possibilities. I've always found that good approaches drive out bad ones in the long run--if people can have a vision.
<Angela Amado> It seems like there is a general consensus among the people on this chat about what is important, and what directions to head in. Thanks for sharing with us about this particular strategy, Steve and Mark.
<Mark Polit> You are most welcome.

<Julia Biersteker> Have you been able to secure individualized funding to move people from institutions?
<Mark Polit> As in Self Determination? Not in CA. But we do have Self Determination pilots in some areas. And that could be done.

<Moderator> Steve, Mark. I think we’re getting near the end of our scheduled time. Why don’t you take a couple of minutes to post any closing thoughts/comments.
<Angela Amado> Any closing thoughts, Steve and Mark?
<Steve Taylor> Well, I'm not sure what to add. I really enjoy working with CAIC on the conference. Over the years (since the mid-1980s) the Center has sponsored something like 30 conferences in different states and localities. What I appreciated about CAIC is that it really is a grass-roots organization composed of committed people. That's different than working with a state office that brings the Center in so that they can look progressive (though sometimes we've had positive experiences with state agencies).
<Mark Polit> The CI Conference was a tremendous organizing event. It brought hope. It elevated the expectations of most people for what can be accomplished. But as much work as the conference was, the hard work lies ahead. Organize organize organize. Build our capacity to force systems change. We don't have a long time to work on it. So see you all in the trenches!!!!!

<Moderator> In the meantime, sorry if we are unable post some of your questions. Within a week or so, we will be posting a transcript of this discussion and a link to a bulletin board where you can continue to post questions/comments on this topic.
<Moderator> Thanks again to everyone for participating, especially Steve and Mark. We would really like feedback on how this worked, suggestions of how to improve the chat sessions and future topics and/or guest speakers. Send feedback to the Quality Mall web master, John Westerman, at weste050@umn.edu.
<Angela Amado> Yes, we really appreciate everyone's participation, and welcome all comments.
<Angela Amado> OK, it's time to sign off! Thanks!
<Mark Polit> Bye!
<Moderator> Goodbye everybody. Thanks again.


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