AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
CATHRYN ECHEVERRIA: Good morning. I’m Cathryn Echeverria and as Diana said earlier, I am with the Arizona Department of Health Service. I’m the chief of the office for Children with Special Healthcare Needs and I certainly want to applaud you for being here this morning and your commitment because eight o’clock on a Sunday morning is a little difficult, especially when it’s cold outside. So I’m glad you’re here. I also want to introduce Kim Stamper and Kim if you’ll come up here and join me, Kim is going to present, participate in this presentation with me. And Kim is a community parent leader in Arizona and has been working with our office for over 10 years. And so we were fortunate that she was able to come. This is her second year here as, and now she’s a mentor, last year she was a family scholar and we’re also fortunate to have Linda Hammond, if you’ll raise your hand Linda, because Linda is here for the first time as a family scholar, but she has been a community parent leader with us for about eight years as well. So, I’m glad you’re here Linda.
What we’re going to talk about today is really what we’ve done for about the last 10, 11 years in Arizona around community development. I will discuss what the Public Health and more specifically the Children with Special Healthcare Needs Title V office and parents of Children and Youth with Special Needs have played in building a parent led community development infrastructure that has been integrated and I think is very sustainable in Arizona. Karen and Lee next will talk about, will focus on some activities that they were able to do through as Rich said, through an MCH Block Grant and how it allowed them to partner with these community teams and to continue to build on this infrastructure and enhance that. We’ll talk about what the parent teams do, what the Title V Agency does, and why and what are the outcomes. I think Rich said earlier that this is a long process and takes a lot of commitment.
This demonstrates really what has gone on since about 1993 and for some reason the dates aren’t on here but they should be on your handout. I’m not sure why they didn’t show up here. Back in ’93 was the first time that this staff from this office started visiting these communities and Lee Hunter was actually a member of the staff at that time and was involved in these initial efforts. Several years went by and there was a lot of dialog that was going on and I think I wasn’t with the office then, but I think a lot of growing and learning, exactly what this was because there was nothing written on really how to do this process. So in ’94 there was the first communities canned conference and I have here led by experts because it was actually led by the staff of the office because I think we all thought we really were the experts and we’ve learned a lot since that time. In ’96 the very first formal teams were formed and in ’97 this conference now was repeated but this time, it truly was, led by the experts, which were the parents.
They did all the planning, they did the presentations, it was their conference. And it was so successful. In 2001 the teams began to be funded by our office and this was using Title V dollars. And then in 2002 one of the teams for the first time received, or achieved a 501C3 status, which this was a very big step. And then where we are today and I’ll talk about it a little bit later in this presentation, is that initiative that we’re doing with the Governor and it’s just been a huge step for us. What is community development? Could I just ask maybe two or three people, if you could say in one word what community development is? Does anyone have one word that kind of comes to mind, if you would just raise your hand?
UNKNOWN: Mobilization?
CATHRYN ECHEVERRIA: Mobilization.
UNKNOWN: Collaboration.
CATHRYN ECHEVERRIA: Collaboration.
UNKNOWN: PARTNERSHIP.
UNKNOWN: EMPOWERMENT.
CATHRYN ECHEVERRIA: Absolutely, that is exactly what they all are, and what we have found is that even though there’s a lot of different ways or a lot of different adjectives that you described this, different situations, different players, they all come down to the same thing that we’re really here. We’re communities and families and partnerships with agencies in an effort to build better communities. How does a community development differ from service development? I think you can see here that service really focuses on problems where a community development effort focuses on the assets. Service reinforces a power imbalance. Community development equalizes that power. Service relies on experts. Community development relies on partnerships. I’m sure this, I’m probably preaching to the choir here, but these are some of the steps that we followed. It keeps children and their families isolated and dependent, where as a community development approach really links people with shared interests. Service meets needs and community development fuels abilities.
Service is reactive and community development is pro active. The bottom line is community development is different from a service approach as in a community development approach it’s parent led and agency supported versus agency led and parent supported. Some of the elements that have been identified through the years as elements of community development talk about building on community assets. Communities assume ownership, which actually results in an approach for prevention versus crisis. It creates connections. Community members are enthusiastic and have a vested interest in their, in their community. Our partnerships with the parents and communities have really allowed us to accomplish far more than we ever could have on our own. And it certainly increases the community self-reliance confidence and accountability. These are some of t6he steps that have been identified through the years with parents as how you go about creating a parent led community development.
And I’ll just kind of quickly go through this because I know we don’t have a lot of time and certainly if you want more detailed information about these steps, we actually have well documented information from a parent perspective, what they do with the steps they do in their communities. And then from an agency perspective, what are some of the steps that we do and my email is on the back and so you could just email me and I’d be happy to share any of those documents with you. One of the first thing is to identify and develop community group of stakeholders. And this is important and it’s important to be actually invited into this community because it provides legitimacy and it shows the importance of it. So we meet with the community leaders and the parents and they decide whether they’re interested in participating this, and then from that point on, we kind of provide some technical assistance but they actually identify what it is in there community, what are the needs and how them move forward.
And they actually conduct this community assessment. They produce a report card, which allows them to clearly define what the issues are and then they all meet and decide what it is they’re going to work on. And they really try to work on something that the team is going to be successful at. And some times that’s not the biggest issue that they actually identified in the community, but it’s certainly one that they can be successful at, which I think is a real key to the sustainability and maintaining the commitment to the process. And then they measure success. There is a document that they do called the catalog of progress and this really, it tells what action was taken and also what the reaction was in the community. And it’s something that’s really nice through the years to go back and look at what this catalog of progress is. It’s incredibly impressive when you look at it.
Unknown: Just to give an example of celebrating your successes.
CATHRYN ECHEVERRIA: Absolutely.
UNKNOWN: In the sense that, I was just saying that that’s a good example of celebrating your successes because you forget about all the good things you’ve done and then going back and reviewing that every time, and he says, oh yeah, yeah we actually did that. Yeah, we got some place else.
CATHRYN ECHEVERRIA: Kind of allows you to refuel.
UNKNOWN: Yeah, absolutely.
CATHRYN ECHEVERRIA: Yeah. Kim is going to talk next about what makes up a community development team.
Kim Stamper: All right, are you going to push buttons?
CATHRYN ECHEVERRIA: I’ll push buttons.
KIM STAMPER: All right. I don’t want to be the button pusher. Well, okay, in community teams we’re talking about these action teams, I’m not sure, did you say that there’s like 11 in the state of Arizona right now. And it serves about 20, at least 23 communities. So these 11 teams, they look a little bit different community to community depending on who your stakeholders are and just people in the community that actually are Champions in their area. For instance, we have, you know, family and youth. We have our special ed directors, our superintendents, some of our Community Colleges come, and behavioral health, we have Division and Developmental Disabilities in Arizona and so different people from their department show up. Parks and Rec, Big Brother and Big Sisters, early intervention, we have a team that I know their mayor is very diligent in showing up and we have other elected officials that sometimes will come and visit. Our police. We have, some of our teams have in Child Protective Services and Adult Protective Services, on their teams. And different provider agencies, so depending, you know, it could be everything from community members anywhere. I mean, we come together because we’re all part of our community and that’s our invested interest. But all of these members deal with children and adults with disabilities of any kind and we’ve really added on to the fact that we now have mental, behavioral health involved in these communities. You want to flip that? So what do the parents do? They’re led by parents, so what do these parents do? Our biggest thing is we bring together partners and we build relationships within our community and we help build relationships within agencies. We facilitate our meetings. We sit on hiring teams for different agencies. We facilitate action. Everyone in our meetings get assignments. Everybody takes what we call rocks. If you have all the rocks you’re going to drop them. You know, and it’s heavy, but we pass the rocks around. And so sometimes we even have rocks and we write it out what we want and somebody will grab a rock. So anyway, yeah go ahead. We participate in State and National meetings like I’m doing right now. We always ask, who else should we be talking to? Who else that is not sitting around the table that should be sitting around the table and we have, if you have 30, 20, 30 people showing up at the meeting, they may each know a hundred different people, well who else in that realm should be here the next time? And once again, we have on here. We facilitate action. We are definitely action teams. We do the work. We don’t talk about it. We do it. And, that’s what’s so wonderful. We can celebrate our successes. So now what does Title V do?
UNKNOWN: Could I ask a question?
CATHRYN ECHEVERRIA: Yes, please.
UNKNOWN: Could you share a few of the (inaudible) projects that you guys have.
KIM STAMPER: Yes, I will. You want me to do it now? All right. Okay, so. So a few of them that I have listed real quick is like in the little town of San Luis, they didn’t have a pharmacy and they had to travel to Yuma to get to a pharmacy and families don’t even always have vehicles. They now have four pharmacies because when people were building and their Safeway’s or Albertson’s or whatever, they got somebody to commit to a pharmacy. Well then, you know, competition hits. So they now have four pharmacies. In the small town of Verde Valley they had no Pediatrician. And now they have four. And in Bullhead City they established a telemed facility. Three of the action teams now have their own 501C3. Two of them are on their way. Later on I’ll explain in our area we have a first responders program and I can explain that later, but just multiple things. Everything from you’re putting on family events. And get families together to build leadership there. And so those are some examples. Does that help?
UNKNOWN: And I think for people from Southwest Institute, we’ll go into a little bit more detail.
KIM STAMPER: Yeah.
CATHRYN ECHEVERRIA: What does the Title V office do? Well, one thing is we provide development dollars because it is critical to the success of this initiative. What that, usually it’s in the form of Grants to these communities and again, we use Title V dollars to do that. We provide compensation to the parent leaders. We pay them for their time and for their travel expenses. We provide technical assistance. This is, in my office I actually have two full time community development program managers that partner with these communities in any way that they possibly can. These program managers assist in the development of the strategic plans and help the teams work with their budgets and what have you. And they assist in developing and implementing sustainable plans. I mentioned earlier that we had a 501C3 team.
We now have three and very shortly going on four and others that, are now looking at this. And this really opens some doors for them because now they get into positions where they could apply for federal dollars and maybe perhaps even some state dollars. Linda? Could I ask you? Are there any other things that you can think of that perhaps the Title V program does from your parent perspective?
LINDA HAMMOND: One of the things that’s really helpful is (inaudible) you have been enrolling communities throughout the state, is the ability that we can use the state operator for our long distance calls. So there’s an 800 number that we call and then they place the call and we’re able to speak to each other through all the team meetings or any of the other personnel throughout the state, so it leads us in that way. And the other way is that we have matched the conference calls with all the parent leaders in those 11 communities in which we share what’s happening and give a topic and learn from that and just keep us moving. And it also helps to be able to share the (inaudible) progress so that we can keep moving.
UNKNOWN: That’s wonderful.
UNKNOWN: I just have to ask a clarification of how you get the state (inaudible).
CATHRYN ECHEVERRIA: Well, okay, it’s creative. Yeah. Actually we’ve not had a lot of barriers to do that. It’s been something that the department is so supportive of what we’re doing here that they have allowed to do that.
Unknown: And maybe, could you tell us really quickly how you developed that relationship, so they think that you’re important, you know, has it been through your leadership or—
CATHRYN ECHEVERRIA: In our office or in the agency?
Unknown: In the agency.
CATHRYN ECHEVERRIA: I think in the agency what has really done this is the fact that we have parents that participate in almost everything we do. So when we’re going to the table with internal peers, sitting at the table with us are families. And they, their voice at this table becomes very, very powerful. And I could probably preach for five years, but sometimes just hearing the parents, straight from the parents because I’m preaching to the choir supposedly, which I don’t always think I am, but certainly the parents are able to express their message and it’s just received much more. So I’d say the most powerful vehicle has been the parents. Okay? And I know we’re, I’ll hurry along here. Why do we do this? For one thing, it produces much better outcomes than we could ever have achieved in working in isolation. And for all these other reasons that are listed on this slide, but more importantly for the real stories. And Kim has shared a few of those real stories and she’s going to share just a couple more right now.
KIM STAMPER: Okay, I’ll share one. Actually, I’ll share, I’m the story teller. I will share a story that actually describes what happens in our community and because the parents now have these skills to bring the community together. I’m going to tell you the Mandy story. Actually, I have a couple of pictures. If you want to pass them out, I want to show you it’s real. Mandy is a 17-year old girl with developmental disabilities. And Mandy has this dream of being a librarian. And if you go into her home everything is alphabetized and this is what she wants to do. She loves to read and she wants to be a librarian. Now, so Mandy signs up at school for, to be a library aide and she was so excited all summer. So the first day of school comes, she runs over to the library during the class time and a librarian says no, go back to your room, because the librarian told the teacher, I am too busy to baby sit. And so Mandy is crushed.
She goes home and she’s crying and tells her mom she can’t be a library aide. Well, you know, right away as a mom you want to be furious because this, they’re messing now with your daughter’s dream. And you know her abilities. Well, instead of just being furious, her mother, because of her skills that she has in her community, she knows and believes in her daughter’s abilities, not her disabilities. So she went to her local elementary school because our elementary schools were lacking full time librarians and really struggling to meet the needs of the libraries. And so she went to her school and told her what happened and explained to them, and they said, no, we need Mandy here. We’ll train her. She can help us out. A matter of fact, they even called the next day and said we have a van to take her back and forth so she won’t miss any classes.
So everyday Mandy goes to the elementary school from the high school and she reads to first and second graders, she helps check out books, she puts things away. She does an amazing amount of work. A matter of fact, they even taught her how to use some of the things on the computer and code books. She is living her dream. And so because of Mandy now the schools are excited about other high schoolers coming in and help fulfill the needs in their elementary schools. And so Mandy is seen there instead of this special ed student that she’s always been, she is now a role model high school student in the elementary schools. And so, a matter of fact, our Governor even gave her an award for “Outstanding Contribution to her District”. And it’s real cute because in Mandy’s room it’s proudly displayed and this reminds Mandy that I can fulfill my dreams and for her mom it’s all about collaboration and not confrontation. And so the whole community won in this one. And that’s how our stories are.
We have, I have so many stories and I could be here a long time so there you go.
UNKNOWN: Thank you.
CATHRYN ECHEVERRIA: Kim thank you for sharing that story with us. And Kim is a great storyteller and I’ve been around the fire with her when we’re on our retreats and she does tell stories. Okay. So are there challenges? Absolutely there’s challenges but we, certainly what Kim just said and the real stories provide the incentive for us to continue on. We’re kind of getting short on time so I’m not going to read through these, I think they’re pretty self explanatory. Opportunities? There’s a lot of opportunities. I think when we talk about, they can now apply for Grant dollars, there’s education dollars. The very last thing on here is the Arizona community development initiative and I need to take just a minute to tell you what that is because it is just a monumental step for us. This is our local for this. It’s called the CDI Community Development Initiative in Arizona .
And quickly what this is, is two parents, Kim being one of them and myself had the opportunity last August to present to the Governor because we felt that we’d been working in this 10 or 11 years but we really hadn’t penetrated the other state agencies, and we just, it wasn’t working from the grassroots up. We needed to go to the top. And so we asked the Governor, we present to her and her children’s cabinet and the parents actually did the majority of the presentation. They allowed me about one paragraph and they asked the Governor to support a summit as a kickoff to start this inner agency approach to doing business, which is very different for a lot of other agencies. We asked her very pointedly to appoint, and the directors were also sitting at the table, the agency directors. To have the agency directors commit to participate in this, their staff participate and not only at the summit but in the planning and in the ongoing because this was just the initial steps.
It was comprised of parents and staff from these agencies and staff from the Governor’s office. The summit is set for April 26 this year. It’s in Phoenix . The Governor will give the opening remarks. The agency directors will be sitting on a panel and we have, I have to read this, but we have six agencies. We have obviously the Department of Health Services, we have the Arizona Department of Economic Security, which has the DDD division. We have the Arizona Department of Education, the Juvenile Corrections Agency, our Medicaid Agency, and of course, a lot of parent leaders from around the state and again the Governors Cabinet Staff. The goal of the summit is that the participants will gain an understanding of community development and how this is a different way of doing business. They will have a starting point and leave there with some next steps and then there will be on going conferences and follow up and reports to the Governor. If you’d like more information, again, just let me know. I want to thank you. This is some recognition to some staff in my office that put this together. And please feel free to contact me and thank you.