AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
BETSY ANDERSON: Now, always a challenge here for the room configuration. But let me suggest first, there are three or four areas that we hope you will be talking about and discussing. And you have some hand out material already on the top priority needs and on the state performance measures. We have a set of the state performance measures for each of the small groups, so if you don’t know what your state chose for performance measures you’ll be able to look through those and see.
We’d be interested in having you discuss a little bit about the priority needs and whether, you know, what question you have about those key words categories and what you think about those. But we really hope that you’ll spend most of your time thinking about this next step, which is the State Performance Measures. And I think we heard somebody, now I’m trying to remember if it was Eddie or somebody else talking--saying this is the year when states are really thinking about how they are going to address those needs. They’ve identified a performance measure but it may be a little bit general and so states are going to come up with detailed ways to address those needs.
So thinking about how any of you might become involved or how if you are part of the Title V staff, how others might be brought into that kind of picture. What kinds of things that you can imagine that you or other groups in your state might have to contribute; would be a very important kind of idea? And how these ideas can be publicized, how this information can be publicized, what would other families or other groups in your state need to know about this? And finally, if you are a family organization or somebody who is not part of the Title V program, what might be on your kind of personal agenda to address with your state? Because I think it’s unlikely even if you look on the website, even if you have all the information, I think you are going to have some questions. You are going to need to sort of understand a little bit more about how your state is planning to proceed, who’s already on board, how your ideas or you might kind fit into what the state is planning.
So we’d love to have you do some thinking about that. And at the very end we’d like to ask, you know, some groups to kind of share a little bit of that information with us. And now, I think what we’d like to try to do is maybe kind of based on where you are sitting, if we can kind of break into five groups, four might be easier because of the way this room is set up. But maybe we can do five groups and so if you can kind of get together based on where you are sitting; I think that will make the most sense. You might be able to shift the tables together or shift your chairs, kind of together, so that you sort of make a group.
And for people who are facilitators, those are Ruth Walden, Michelle Kravitz, Susan Colburn, Bob Cook, maybe you can raise your hands, Bob Cook, Grace Pushpenny Williams, Eddie Townson, Rodney Farley and Maria Nardella. And so we are going to have, in some cases we are going to have two, kind of two co-facilitators. So if those people would kind of get, stake out a territory and then we will and then people can kind of move their chairs more or less in that vicinity.
Come up here and then we’ll hear from each of the group--yes, they, yeah, yeah. Yes, you can keep whatever your performance measures, whatever handouts you have there. And we are just going to get a little flavor of the discussion that went on. So, all right, I’m going to ask Joan to give a report from the group that Ruth and Michelle facilitated. So Joan.
JOAN: These were all the reports coming out of our group, Ruth?
RUTH WALDEN: Yeah.
JOAN: Our group included people from Arizona and New York and Oregon. Did we have another state?
UNKNOWN SPEAKER: Washington.
JOAN: And Washington. Okay.
UNKNOWN SPEAKER: And Arkansas.
JOAN: And Arkansas. As for how to publicize new information, talked about using websites, showing preliminary data to community partners and asking them what they thought about it. We have community development teams that participated as parents, through them it was learned that parents need continuing education to be kept informed and make sure parents were aware of all the issues.
Title V news letters were used to educate providers and professionals and families. And teaching family leadership was another tool. One person stressed particularly that hospitals and community centers should be used as resources for getting information out on Title V and to educate families.
To become more involved in the identification of ideas and strategies and performance measures, it was suggested to take the existing performance measures to parent groups for inputs and involve them through--these are not my notes, just a second. Meet with parents regularly, find out ways that things that can be done differently.
We talked about random selection, phone surveys, asking specific questions but then also how to get to the people that wouldn’t be captured in that way. And some people talked about using focus groups and surveys that were at clinic sites and other community sites.
Oral health was an example of a measure that cross cut both the children’s population generally as well as special needs, how that takes on a different flavor in the two populations but it’s a good cross cutting measure and measures related to general health and education generally.
In terms of agenda items to discuss with state Title V programs, our group talked about what questions might parents ask of the Title V program and one parent in our group said that she thinks that parents want to know how the Title V money is being spent and what are the priorities. Also, how can parents get help knowing what’s out there and who can provide it. What’s available in their own communities? There was a need to talk to someone who is knowledgeable about Title V and again, the idea of getting someone who understands Title V in the hospitals, who could be a resource to parents.
The general issue of accessibility was brought up and again especially at the hospitals and one thing that we were talking about right towards the very end was the need to educate physicians in how to talk to parents. And one parent described having a diagnosis kind of dropped on her like a bomb and then have the physician flee and she had to go hunt him down and say come back, we are not done. This is the beginning of the conversation, not the end of it. And so we had some conversation about educating physicians around how to talk to parents about special needs.
BETSY ANDERSON: Thank you very much. You say you’ve been employed by your Title V program for two weeks.
JOAN: Well, I actually led the Needs Assessment but not in my current role.
BETSY ANDERSON: Okay. James, you want to give a report from your group. This is the group that Maria and Bob were in.
JAMES: So just a couple of observations first of all, we had a nice diverse group. Coast to coast, we had everybody from New York over to Oregon. We had the most populous state in New York to one of the least populated states, Idaho. We had people that are directors of programs and we had people at the local health departments and we had families and we had specific interest groups from outside of Title V such as the Early Childhood Systems grant, which reflected some very specific interests.
One of the things that we came across was that we also had a lot of people who had participated in the Needs Assessment at some level, despite this there was a lot of new information that was shared or at least kind of a, I don’t know if enlightenment is the right word because I’m not sure that we necessarily felt enlightened but at least more aware of so many things that were going on regarding the Needs Assessment.
So that led us to a couple of observations that we would like to share. One is we think that there needs to be, although we would agree with Betsy that there needs to be a more public awareness around these Needs Assessments but we think that even more importantly there needs to be more information internally, that so many of us are just hearing about these for the first time or maybe in a new way that we are really becoming able to understand that.
So internally, within our organizations but also across states because we see that even though our states were quite diverse they were able to share their approach to some common performance measures that were helpful among the states. In other words, perhaps some of the specific ways that measures were being measured. I’m using this word an awful lot here but it comes up again is that as we look at these needs assessments, one of the things that we realized is a lot of them are not listed in ways that are realistically measurable. And so we see that there’s a lot of fine-tuning that needs to be done for some of the performance measures particularly with the realization that these performance measures are going to be the accountability of our programs.
What the funders are going to look at, how well we are actually doing our job, in part based on how well we are able to meet these measures. And so these measures need to be thought out in a way that allow accurate and credible measurements.
And so the last thing that we wanted to mention was that we again want to look at AMCHP as a way to improve communication both internally and across the states along the lines of these measurements. Thanks.
BETSY ANDERSON: Thank you very much. And you were part of which group. Susan Colburn. Okay, great. Come on up and share your insights.
UNKNOWN SPEAKER: Hello, the group had a lot of questions. One of the top questions was if states are mandated to address the top six, how do we choose the others as priorities. Do we plan in advance for the five-year assessment and how do we do that?
Block Grant public hearings, who goes, what type of information is given out as testimony and can anyone come and observe, are families involved as well? How do states have families involved in the preparation of the five-year assessment and the MCH Block Grant preparation? In choosing the priorities, was our commissioners priorities also considered because sometimes there may be conflict within the department or state overall? What other ways to we integrate all MCH programs beyond your information systems? How do states decide whether specific performance measures are chosen related to special health care needs?
We had some response from states, Alaska and Minnesota, they developed fact sheets on potential priorities and they publicized that through a website and I give you the website if you are interested in checking out their fact sheets. It is www.health.state.mn.us. And look in the data section.
We have some comments from parents in our group, as a parent I want to be a part of the next Needs Assessment for our state and in making sure there is family involvement. Another parent said that she was concerned about the MCH funding and it is not focusing on special needs specifically. And she’s especially interested in finding out how the 30-30-30-10 funding formula is really working in her state. I think that’s it.
BETSY ANDERSON: Thank you very much. And I think we have two groups still, Grace Eddie or Rodney, Maria. You can both come on up and we’ll--
MARIA: We had Guam, the Northern Mariana Islands, Virginia and North Carolina in our group with Arkansas and Washington. And I think just, not to repeat what other people have said, we just did some comparisons on how some input was gathered across the different states and territories for establishing priorities like using publics forums, using parent advisory groups, family advisory councils. And then the only other addition I’ll make is how people have used some of the data from the performance measures in the different areas I mentioned was to get information out into the media, to use it for new grants, to use with state legislators and to use it in the reprioritization of some existing state funds. So I don’t think I’ll add anything else.
BETSY: Okay, great, thank you Maria.
GRACE: I’ll be brief because since we have covered most of what we discussed too. Okay, we had a unique; we had all the representatives from the Federated State of Micronesia, Virgin Islands and Marshall Islands and Wyoming, Washington, New Mexico, Massachusetts and Maryland.
Just to summarize it, I think they emphasized the fact the family involvement should be there in priority prior to developing the tools that was emphasized. And awareness, education, increase the knowledge, that was one that we talked about. And including, we talked about the new National Performances and the priorities of those different performance measurement Or diversity that should be given a priority when these performance measures, especially like in New Mexico, rural areas, we discussed about that. And we heard this regarding family involvement, nothing about us without us. And I think most of it was already been talked about. Thank you.
BETSY ANDERSON: Well thank you all very much. I think, and let’s give a special little applause to our facilitators and all of you as participants. And I hope this will give you a chance to both at the AMCHP Conference but also when you go home, raise some issues that you can then pursue in your states with your Title V program and with other families. And thank you very much.