MCHB 2006 Federal/State Partnership Meeting
Cultivating Champions - The Bravery Factor
October 15-18, 2006
EILEEN FORLENZA: Okay, thank you. Okay. So, cultivating, growing, fertilizing, planting the seed, all of that are steps to bring a family member, a parent of a child who receives services to bring them to the level where they make an impact. Now, for the purpose of today, I'm going to refer as family members as the parents, siblings, other family members, the self-advocate themselves. Because I believe that it's all a large continuum. I am eight of nine children. My oldest sister is only eight years older than me, meaning, my mother had the first eight of us in eight years. Talk about bravery. And so as I've said, I have lived in the benefit of what parent involvement looks like. And yet I understand that there are other families who work in a place of void. Who have not had family involvement, who have not had their courage and bravery cultivated in a way that they believe they can step out in a place. So, I come with both of those pieces of understanding.
As, Kathy mentioned, family leadership in the MCH world is the next natural step to family involvement. I think that conceptually, the system and maybe this is going out on a limb just a little bit, I think the system gets it in terms of how important family involvement is, but we're now needing to talk about family leadership, and what does that look like? Because just having a family member at the table is not good enough anymore. We've all talked about the big tokenism word, and that is not--I'm not saying that, that's where we are today, what I'm saying is that family leadership bridges the gap between theory and implementation. I don't even know if I'm following my slides, so great.
The faces that you'll see on my power point today are families from Colorado. We did a branding--social marketing campaign last year and had a wonderful photo shoot. All the families that you see are families of children with special health care needs in the State of Colorado. And I think it's worthwhile to talk about a little bit, Lorrie Sanchez' son, Vince, is born with a very significant genetic disorder and when she and her parent leadership role did the research to understand why is Vince alive at age six when most other children with his disorder passed away before when they we're two, and she realized it was early detection, early intervention. And so Lorrie partnered with the health department and was able to provide this past July, legislation for the expanded genetic screening, where the state used to only do five genetic screens now we're up to 32, right? All genetic metabolic disorders, yeah. And please, this is interactive, so, if anyone has any questions or clarity as I go, love to hear from you.
And I think we could all say that we have seen evidence in our states when families partner with the agencies and what a difference that makes. Again, family members offer the real authentic piece between theory and implementation. Let's take Child Fine for example; we say the guideline is 45 days from the time that the call is made. But we know from families that sometimes that 45-day requirement for assessment doesn't happen, we need to hear that, we need to hear from families in a way that's meaningful. And when that experience is buoyed by training and mentoring and appropriate cultivation of skills, families it can be very impactful. Okay.
When family skills finally get to a point where they are useful and can be utilized for impact, we need to think about ways to link them to the particular cause. As I mentioned with Lorrie Sanchez, what a perfect opportunity for her to show her parent leadership skills and look at the impact that it made for the entire state. We have family members that work in policy development, we can do train the trainer, advisory, subcommittees all kinds of different ways to put in.
The piece that's really critical in terms of parent leadership is also the need for the diversity. Diversity matters quite a bit.
Can you switch to the next one, please?
And it's not just as they're talking in the other room about cultural competency and that kind of diversity in terms of--I mean diversity in experiences, diversity in opinion, diversity of thought and the other more cultural diversity that we talk about in terms race, language, those sorts of things. What we hear all the time, and I was chatting earlier with Rodney from Arkansas, and he's being asked to go to a lot of committees and a lot of national conferences and we all do. Once we're in that pool of family representation and family leadership, and so the challenge is for families to have an expansive pool of family leaders, so that diverse experiences and diverse thought is captured. So part of our work at Title V is to begin to understand how important that is to expand the pool. It's not enough to just have one parent representative at the state and a paid position when the needs are so diverse.
One of the strategies that has worked very well for us in growing our family pool of parent leaders in the state of Colorado, is understanding the multi-dimensions of families especially when they're parenting children with special healthcare needs. One of the things that I've been asking some of our partners in the state to do is that, when you welcome a family leader in to your circles, if they're on the committee, remember to ask that question, "So who were you the day before you got that diagnosis, what were some of your skill sets?" As Kathy said, I had spent 15 years in corporate marketing, right about the time that my daughter Holly was received her diagnosis. When I started doing work at the state, my big rah rah was putting the public back in public health. I just don't see where there is enough marketing, and advertising and getting the word out. So as a parent who will be receiving services and then having the skills set of marketing, and messaging and consistent messaging, in the bumper sticker, in the elevator speech, that's one of the skill sets that I've brought to the state, is being able to articulate clearly what is it we're trying to say. And I have found in working with families by asking that question, "What did you do, who were you the day before you got that diagnosis?" You'll find, "I used to run a restaurant", "I used to do event planning", "I was the assistant manager at a large hotel", "Oh, I studied law", "I was in my third year of med school and I quit." You know, all kinds of things. Remember to ask that question, we're not one-dimensional paper dolls and that's the piece that I have found to be most helpful, is asking parents as soon as they come in, "What kind of contribution do you feel you can bring to the table?" The Copp family is a family I often talk about because they--we were having a chat in the parking lot after an occupational therapy session at Children's Hospital and we're talking about durable medical equipment and what a shame it is that our kiddos go through their DME simply because they outgrow it but not because it's worn-out. So, I had been working on in my mind about an exchange library for durable medical equipment. Well the Copp family happens to--they started a small company when their daughter was diagnosed and she has some skin challenges and before their diagnosis, he is a venture capitalist. He has raised 25 million dollars in the last three years, in the commercial corporate world. Now we're talking about durable medical equipment, recycling project, on behalf of children with special healthcare needs, within six months the Copp family organized, put together a board of directors, got their 501C3. Since May of just this year, they have donated into the community $85,000 worth of durable medical equipment. Now the Copp family happened to have a business of their own that had to do with inventory, because they do skin products, they have a warehouse; they have the software, what a perfect match. And so they've done this community benefit, which supports Medicaid, so now we've got the Copp family talking to EPSDT and other folks in our group to talk--how can we support what they're doing? Grassroots, family run, that's an example of asking family so what can you bring to the table and allow their professional skills to overlap with the skill of what we need in the system. The Copp family, by the way, was nominated, elected, chosen as the top-one of the top three entrepreneurs in the country for his work in the corporate world, and what a blessing to the state of Colorado. And we got to start asking, "What do you do and how can we help?" There's a family in Boulder who moved to Colorado during the dotcom craze. And they have two kiddos with Down Syndrome. The wife is an attorney, and he's the IT guy, we've put them to work on certain projects, it's an incredible marriage of skills. So instead of looking at "Oh my agency needs someone to plan an event," or "My agency needs someone to research policy," start asking the families first, "What kind of skill set might you have that would fit our needs" and figure out what you've got that might work. And again their multi-dimensions will come out and you will see where they can add contribution to your agency.
And I contend also that every encounter with a family is an opportunity to cultivate that champion that's in them. When you see a family going through a particular challenge, or a particular celebration of an achievement, begin to start prodding further and asking, "What further can I do to cultivate that champion that's in there?" We all need champions for our cause. We all do. Start asking, "What would it take to get your skills to transfer over to here?" We don't have to reinvent the wheel.
When I started with this state, we had just finished offering direct services. And there was this identity crisis about, "What does your agency do now? You no longer are the payer of last resort? No longer offer direct services." And so it was reinventing the agency, and I'm saying that's what parents have to go through. When you look at corporate leadership, standard leadership models, we talk about leaders who come into their leadership role through situations. Known again in leadership trainings as situational leadership. Families are just tooling around, doing their thing, they get this diagnosis and they make a U-turn. And oftentimes our lives go a different way. It doesn't mean it stops. It just goes in a different way. So the question is, how do we reinvent-how do we continue to cultivate the skills that already exist in a family and fit them into our needs that we have? We know that families often receive support from other areas of their life. This slide was put together by our Hands and Voices chapter, which is a family advocacy for children who are deaf and hard of hearing. And in their research, they have found that there are these different areas where families receive natural support, and that is through other parents, through just information in their own research, internet and whatnot. The existing communities, which is their family, their faith organization, their own friends, and their neighborhood, and that is a key place to remember; families do not live in isolation. And that amongst their own community, they're getting support. Also through the different professionals. Families often, especially in early childhood, the bravery that it takes and the courage that it takes to allow for service providers in our homes, three, four days a week, and bring--come in to our world. And there's this form--there's a friendship that forms with them. And knowing that information could be transferred, it could be a conduit through those other professionals as well as other adults or other people who have similar diagnostic experiences. So, the reason I bring this up in terms of where other families get support is this is also where families get different experiences. Families in their schools maybe serving as class secretary, they may serve on the allocation committee, but their experiences are varied. And so remember where families get their support. That's also where they've received different experiences. Again, the impact of family leadership is the piece that I want us to really think about today, it's the next step beyond family involvement and family participation. Think about in your communities and in your state how has the presence of parent leadership or think about nationally, look at the impact that we have seen since Family Voices came on the scene 10, 15 years ago, and know that, that's evidence-based, that we have an opportunity to look at some of them.
So, the next slide talks about--this is a model that I see as the progression of family leadership. I want to spend just a little bit of time, what this shows is that families start with just managing their own situation. We often hear in leadership studies the difference--that's there's a clear difference between management and leadership, we know that through the leadership institute here in the
The next step is the greater, the bigger ring. When families can finally say, "I am ready to testify, I am ready to be involved at a deeper level." The outer ring of that, I believe, is where the funders want to see all families. I think that the funders, who are funding family leadership or family involvement, they want to see families out here, ready to make a difference. But oftentimes, what are we doing? What is represented by those arrows? What are we doing as agencies and as a state and as a program to offer the skill set to go from management to leadership? Start to ask yourself those questions, because I contend that the worst thing that we do, the most compromising thing we do is when we first meet a family and we see the potential and the joy and the--all of the skills sets that are there and we immediately ask them to sit on an advisory council. And boom! Not prepared, overwhelmed, unaware of the bigger picture of what we were learning today, the history of MCH, whatever it might be. So, be aware of the progression that it takes and understand that yes, the funders and the systems need to have families on that outer ring. But it's our responsibility to say what can we do to get them there? Now, we all have family leaders in our circles that we work with, I assume, with all of you guys? And I've often wondered if we could do an assessment of, "How did I go from the very first conference the, 'Parents Encouraging the Parents Conference 'or the 'Inclusive Education Conference' how did I go from there to where I am today, 15 years ago? What happened? Was it mentoring? Is it information?" Sure, a lot of it was professional training as well. But there are--just like what we do with our kids and our IEP's. What kind of strengths can we focus on to look at asset mapping? How did the parent go from the inner ring of management to the outer ring of systems change work? Because we know that not all families identify themselves as a leader. Not all families come up and self-identify, and-or even comfortable of using that terminology of the leader. And I would challenge to think of different roles of leadership. One role of leadership is-the role of leadership is not always this; standing up in front, talking about testifying; looking at other--there are so many other ways of leadership. That might look like doing lit research; it might be somebody in your community who just keeps their pulse on the news letters that are coming out of all the elementary schools or what's going on at the high schools? Do they have inclusive practices? Taking leadership in small chunks that fit again that skill-set that we talked about earlier. Because not all families will self-identify as being a leader, however, I do think that part of our responsibility as organizations and in the agency is for us to be well-equipped to identify what some of those simmering skills are. That we can then say, "I think you've got an incredible gift of coordination, I think you've got an incredible gift of having things organized, I see you as a leader in this way, can you help with this particular project?" One of the things that I think is really critical is being able--when you have a standard community outing, a community fair. It's our tendency to think that our family leaders are only those within our agency. What are we doing to engage parents outside of that? A parent can very easily do the registration, can do the marketing, can do the flyer distribution, can do some of the informing. Whatever way we can to get families engaged in this system at any level, starts this progression model of having families come out. Because I do think that sometimes the only thing standing in between a leader and leadership is that opportunity to do what it is that they can do.
Again, the outer ring of families is where the stakeholders want us to be--this family, he's from
So I'm going to talk just a little bit about some real strategies, there are two steps in parent leadership that I think are important. One is recruitment, the next one is retention. It's the whole idea about volunteerism, recruitment and retention, they all go together. So let's look at some different ways that that happens, I think the first in recruiting, again, is for you as your own leader to be able to express how much you believe in the role of family leadership. And engage in inter-agency data sharing, I think this is critical because we oftentimes have different agencies engaging in parent leadership and we're not talking to each other. In the world that I live in, children with special health care needs, we have the ARC doing mobilizing families, we have DD council doing this training, we have the Department of Ed doing another training, no one's talking to anybody. So how are we capturing the emerging family leaders in our community as a whole that is absolutely not tied in to their funding stream. Who cares what money stream they're being paid on, what we care about is system's change, what we care about is being able to have this pool of families. So start talking to different agencies, it's so not just about your--what your work is doing, we talked about the Future Search model and how important it is to bring all those players together. But are we asking the question, "Do you have parent leaders in your group that could impact my program over here?" I think that that's critical. And when you're in training notify the participants during the training. "Hey, I'm really interested in growing family representation and family leadership." So anyone who's here today, who's interested in knowing more about family leadership, please let me know. Modify your form to have a checkbox that would indicate the next step of retention. I think what's really important again is to share the impact. When you've had an initiative in your community that has involved parents, and has made a difference, share that. Tell your legislators. Tell the decision-makers in your area that, "Hey, I just want you to know we had 10 families at that motion at the courthouse today." Only one of them spoke but just having them there made a difference. And that's what Family Voices has been so good about over the years is starting the track, some of these successes. Because we're all outcome-driven. What is it matter? So what? Now what? What is it matter? We have to be able to identify that we are making a difference.
I think that one of the most critical pieces, we're working on in the state of Colorado is building a family leadership registry. At every opportunity, we are asking families to fill out an intake form and to look at, what are some of your strengths, some of the things I talked about earlier. As we begin to build this database of families, we should be able to query, I need a family member from a rural area with traumatic brain injury knowledge, who has been trained in counsel representation. And we should be able to query that and find who that might be.
We all have early childhood initiatives that we have to look at. Families are often in management mode. They're in management mode in those early years. At some point, chances are, they're in the outer ring. Are we tracking them? Are we helping families when their child was diagnosed at age two, where are they now? The child is 17 years old. That family member may have gone on and started their own business and has a ton of marketing, and a ton of finance, and all kinds of budget-type of skills. How do we get them back? Because they've come out of management, and they're now at management of their own lives, and they're now in the outer ring. What we have found is that the Department of Ed has, with our Parent-Training Institute, has a ton of trainings. The ARC, Headstart, other agencies are spitting out family leaders left and right. We have no way of knowing where they are. And how in this one community-when I was in Pueblo, Colorado a couple of weeks ago, I said, "Forget this sophistication part, keep a file. Start asking, who are the parent leaders on you PTA? That particular small group has three school districts in the town of Pueblo. Who are the parent leaders at the school districts? Who is running the early childhood? How many of those professionals that are working in leadership roles actually have parents of children who might be served by a Title V kind of an agency and start looking at the different layers. A parent leadership registry is going to be critical as we sustain parent leadership in this country further, and further, and further. Each community should be able to complete their own family leadership registry and my goal is to have, at least in our state, a large database of parent leaders. We have been funded by some local funders, health-related funders for $40,000 to start this work. So we're just now creating our database, we're getting the information out, starting to query families. And at every training I'm asking families, "Are you okay with being a part of the registry?" And chances, so far, everything has gone really well.
So now we talk about retention. Again, family leadership is an investment. It's not a one-time shot. It's not sending a family to the MCIP conference and then not checking in with them again. It's an investment. It's on-going, on-going, on-going. Asking yourself, when you send them to a national conference.
Somebody wants to come in.
Asking that question about what steps am I offering this family to go to the outer ring? It's not a one-time shot, it's an investment that's going to take many years, and the sustainability will be seen through the years again in your state as well as nationally. One of the other pieces that Kathy talked about early was compensating family leaders. In our state we have the--as most states do, all states, the Early Childhood State Systems Grant. The structure into Colorado, similar to many states, is that there are different groups, task forces that are working on the systems development, does this make sense to you guys? Okay. So, the data integration, work force development all other pieces. Our work has been that we have populated every one of those task forces with two parent leaders to assure that in the systems development piece, parent leaders are a part of it. The further step is, we are paying those parents $25 an hour for every meeting they attend, up to a $75 cap. These are moms, dads who have decided to go to that middle ring, to tap their toe in the water of community involvement and are saying, "Yeah, but I've got the gas mileage and I've got kids, we're not doing mileage and all that, it's $25 an hour flat rate." The piece that has been most critical in that is that we ask those parent leaders to report back on a monthly basis what task forces did you attend? Where did you go? What was your impact? What did you see that shifted in that room when you were there as a family community member so that we can start tracking what that looks like. Compensating families for their work, and community work is a new and novel idea, is what we have found. Often times there have been families who have asked, "Well I can't take that money, it will disrupt my Medicaid allotment or whatever that is." So, we make payments in a Wal-Mart card or a grocery card, something like that, to kind of get around that.
What I have also found in retention of parent leadership, and some of my colleagues might disagree with this, but I think what's important when a family member comes on and they're designated as the family parent leader for that project, that you call them a project consultant. Because oftentimes the power and authority is deluded, the minute that family member says, "Well, I'm just here as a parent." They aren't given business cards to network with other people. There's already this sense of, "The playing field is not level here." But if they can introduce themselves as, "Hi, I'm Eileen and I'm here as a project consultant on this particular initiative. And I happen to have a child with significant health care needs." Notice the difference. And I often tell families when they do introduce themselves as a parent, I say--and that's not a parent with a small P, that's a parent with large P, a capital P. Because we are oftentimes, come into a scenario where we are looked at as being--that sounds not empowered, I don't like how I'm presenting that. It's a piece of taking it to the next level, that's all it is. And when you attach a title to a volunteer role, which if it cannot be volunteering you can pay, that's even better. But I like to introduce family leaders as project consultants on particular initiatives and it does make a difference. And they do have experience and they can convey that because we've led them from the management to leadership. I think that's a critical piece. Again, track the development of your family leaders and in terms of retaining family leaders, start that parent registry, the leadership registry will be critical in your community. So, a little bit closer look on recruitment if we go back to what are some real skills that we can talk about? Remember to broker, as a person in your agency, broker--any kind of leadership opportunities that you can. If you're having a state meeting, why can't-how about have an idea of family consultants from around your state will moderate every breakout for your state meeting that you're having. Involve families in a meaningful way. If you have an education conference, can families be involved in the planning? Not that they have to be identified but just so they can just so that they can start get the feel and they have name recognition and face recognition. Begin to look at current by-laws and guidelines of your agency and others around to look at what's the parent leadership, what does it look like here. Last spring, the school district that we are in, the special education director and three out of four assistant directors abruptly announced their retirement in April, and end of the school year is May. So, I heard through the grapevine that they're already starting interviews. They had an interview committee for the special education director of 22 people. Attorneys, therapists, gifted and talented, all these people. And I heard through the grapevine that the interview process was starting Thursday. So on Monday I called and said, "Do you have any parents on this interview committee?" "Well no, we don't." That's not okay. Well you can submit questions if you want and we'll include them in the script, that's not good enough. Now I happen to have a little bit of an in with our school district so I was able to assert myself. However, when I got there, the day before for the pre-training, the group was so large, the 22 people they had us in two rooms, 11 interviewers on this side and 11 interviewers on this side. I can't be split in half, so I said, "Well, if you have two interview committees you need to have two parent representatives on this team." I call the mom, she's a nurse, a NICU new nurse, she has two boys with autism and her husband is serving in
The impact was that day in the room but the bigger impact for families to understand is the outer ring. It wasn't enough to just get Leslie in that room and get her paid. The impact is we now have a recommendation at the Department of Education that the rules and policies will be different now. And I have a lot of stories about how we can do that. The difference though was parent leadership, one of the critical training is having parents, again, move from management to the outer ring. And how do they take their experience and make it great for the greater good? And that takes time, and training and mentoring because the worst saying, as I said before that happens, is you send a parent in to an advisory council and they're still in this role and they tend to speak from their own experience. This is what has happened to me and that's not where the stakeholders want parent leaders, they want them on the outer ring. So you have to keep that in mind.
Are we getting locked in or locked out?
So, again, to look at some other recruitment strategies in a more refined point, if you look at, again, look at the current by-laws just with the leaderships lens think about what are we doing? How can we revamp what we're doing that will capture not parent involvement but parent leadership? How can we elevate families to a place where they are in the outer ring and making an impact for the system? Again when you have different trainings, have a place on your little registration form, "Are you okay with? Do you want to be involved in? Can we keep you on our mailing list?" Whatever that is, that sustainability is huge because I know that Rodney will attest and many other Family Voices people that will say, "We cannot clone ourselves and we need to have more parent leaders growing and growing and growing." And how are we going to do that but make it operationalizing that in a bigger way. Having this family leadership registry is one strategy to make that happen.
Also take a look at other groups, the PTA's, places that naturally work with families. The Mops group, which is Christian mom's group, they have a lot of leadership training. Various training groups and Jewish family services and some of the groups that we work with, have parent leadership. How do we bring all of those initiatives together, and say for the sake of children's health in system's change we need to have this conundrum of families that we can call on.
And so start looking around with other agencies and ask--I work for Title V, that recommendation that I made to the Department of Education had nothing to do with Title V, but it's looking at different agencies and asking, "So what are you doing to affect family leadership and family involvement?" Because we all work in this continuum of meeting this systems change. One of the other pieces that I have begun to encourage are other partners. For example we have a mental heath grant, the Samson grant for early childhood and mental heath. And I have asked that they put into their budget, a line item on family leadership in everything that they do. Not just them, but also our state systems grant for early childhood, every state grant that's coming our way in terms of sustainability, I'm asking the program director to write the proposal and to implement the grant with the line item on Parent-Leadership Development. We have got to have community buy-in, so that again, we're not having just one agency taking all of that on. But the schools should offer-the advocacy group should be offering these kinds of work. It's similar to what we heard yesterday that three percent of businesses should do-put so--have some buy-in on child development and I contend the same, that for those of us who work with families, every one of our projects should have a percentage of our budget for family leadership development. We should be sending families to MCHIP and to other-to NHCQ and other large children's health and to come away with leadership skills that they didn't have when they went there, and expanding that pool of families. And the way we do that is to have full community buy-in by having a percentage of all of our grant money's going toward that, and that's that investment piece I was saying. It's not a one-time shot. It's constant and continual.
Maintaining an expansive roster, again, will bring together the diverse perspectives that we're looking at. How much time do we go to 11:50? Oh 12:50, yeah.
So I think that lot of these pieces come together by having that understanding, that this is an investment, this is a long-term project, a process that involves family leadership from the early childhood years all the way up through transition years, and to the high school. And it's, again, not just the parent of the child, but how do you start engaging the brothers and sisters of kids who are receiving services-the full family, the fathers, the grandparents, all of that sort of thing. Because it's all about systems change and making an impact, and having our voices heard. So I have, kind of, finished up my whole piece and we'll have some time for questions and answers. But I just want to leave you with-we have moved away from-I think again conceptually, generally we understand that the voice of those being served, it's beneficial for them to be at the table. But in terms of systems change and making an impact for sustainability, and how we're going to affect policy in this country, how we're going to elevate the need for more funding for parents and for children, for moms and dads, it's all it got to be a unified voice. I had this vision once about, if the governor said it's time for us to circle the capital, and show the world that our state cares about children, how would I call all the families that I've talked to over the years with our Family-to-Family grant in our education-in our inclusion grant? How would I do that? And the answer is it's all in my memory, and it's all in Christy Blakeley's memory, and it's all in-who's thinking of this? The doctors, the physicians, so we have to have a systemized, and operationalized way to not only track and gather families but engage them in a meaningful way. So if we did have a call at some point to circle the capital and really show a unified voice of change, we would be able to do that in a way that was meaningful. So I think I've covered a lot of stuff, and I want to leave some time for some discussion. Kathy, did you have any-?
KATHY WATTERS: I like your summary statement. Saying we're really going from participation and involvement to really providing the tools to move in the leadership.
EILEEN FORLENZA: Yeah. Betsy, did you want to talk about your-the Family Voices report?
BETSY ANDERSON: Oh! Well just very briefly. First of all, Eileen, what an outstanding presentation.
EILEEN FORLENZA: Well, thank you.
BETSY ANDERSON: You just touched on so much with so many people here are just resonates with people and I think probably people are also going to have a lot of ideas and questions and comments and maybe researches and strategies. I just want to mention that at Family Voices we did a survey more than ten years ago about how families were involved with children with special health care needs programs and then we have followed it up and so here is our new report. So we hope you might want to take this. We interviewed every state Title V program directors so some of you hear may have been interviewed. So there is very rich information and for children with specal health care needs programs it looked back and compared with states said ten years before and you will see now surprisingly tremendous amounts of growth. So I think you will find that a lot of fun to look at. You will also be aware of lots of new areas that families are in fact moving into in some states. So there are a lot of ideas. Also, and this is a new step for us, we also interviewed Maternal and Child Health programs, the MCH programs because they have not received as much attention for how they are involving families, what they're doing to incorporate families and family leadership. And in a way, it is an interesting thing for us to maybe think about as a corollary to all the things that you've been talking about is it's not just important that you're a parent of a child with special needs as I am and as a number of other people here are. It's not suddenly that you have all these other tasks and stuff you have to do, it's important for all families to be involved even if you don't have a kid with special needs. And we haven't always told families that they have an important role to play in the health of children and in the kind of leadership opportunities and possibilities that they should be providing in partnership with their Title V programs and with other programs. So many-I can't remember which one I had in my hand - but so I think this is kind of baseline information on how families are involved with MCH programs.
EILEEN FORLENZA: Thank you so much, thank you. Any comments or feedback in terms of what you're doing in your area? Yes.
UNKOWN SPEAKER: We have a (inaudible) and we have probably about 45 case parents that work with us (inaudible) start of the program. But I recently-we have great success in the special needs area involvement and really building leaders and I recently became the supervisor of a MCH Parent Program and so we have some (inaudible) about three or four parents that are involved in this area. Things like administration and lead and early childcare. You know there's lots of room, I would say lots of room going from the enthusiasm of the special needs area and coming in and seeing that. There should be lots of room for parent involvement but you seem to see a whole different strategy and so I was looking for some things, some ideas or some resources that we could (inaudible).
Things that the parent's themselves need to do a lot of like mailings or a lot of-maybe working on (inaudible) materials about lead poisoning or screenings or different things. Like there seems to not be the same kind of passionate information sharing and enrichment in policy and discussion. So thoughts or-
EILEEN FORLENZA: I do have a thought. In our systems, in our Early Childhood Comprehensive Systems Grant, that is a systems development initiative for the entire system, not just children with special healthcare needs. And what we found was using the families who have been in the fire of the special needs community, that we have built a reputation of knowing the system well, kind of have a bulldog personality in terms of perseverance and so what we found similarly is when you ask parents to be involved or have not had that experience of having to fight for or just look at overall, there is a difference in the passion level is what we have found. So the mentoring piece does help but also giving specific tasks and given specific desirable outcomes to say, "We want you involved and this is what I need in 60 days. Can you give me a report of all of the trainings that are going on in the state right now around parent leadership?" That's something that we just got a grant from our child abuse prevention grant, is that we are doing a resource map of all parent leadership curriculum currently available in the state, through community colleges, again through other community agencies and not parenting but parent leadership. Systems leadership and so if you could give a specific task to a parent and explain why this is important, sometimes that's helpful versus coming onto an advisory or getting involved in just a particular project in terms of doing the mailing or whatnot. But talk about this imitative needs some research, can you help me with that piece.