AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
BETSY ANDERSON: Great, thank you Susan. And now we’d like to do is we want to give you a little bit of an overview just very brief on the Title V Needs Assessment which states have carried out this past year.
You have information on your tables, you know, at least a little summary information if this isn’t something you are super familiar with. But then what we want to do is, we want to break into small groups and we have facilitators identified and we have all of your states state performance measures. Our goal here in the small groups will be to have everybody become at least a little familiar with what states have identified. And of course we realize some of you are the state and in fact are super familiar with this. So we hope those people who work for Title V Programs will feel free to jump right in and, you now, help with some of the explanation and discussion.
But we really would like everybody to go home thinking about what you--how you can be involved in these important next steps in terms of addressing the states needs, what your role might be. Because one of the key themes of the Title V Needs Assessment was really partnership and you heard both of our earlier speakers talk about how important that is. That it’s not just the Title V program staff that is going to address these needs, it’s really how to engage the larger community in doing this.
So this is a chance for us to think about, you know, how we might learn about the needs and learn about the ways states are going to address them and really become involved.
I think most of you, as you kind of remember, this was a five year Needs Assessment and states turned in their Needs Assessments in July, this past July. And the Maternal and Child Health Bureau is actually going to be contracting with an organization to do a big kind of assessment about how states went about doing it and all kinds of things. So today we can really only talk in a preliminary way but we know what needs states identified. So we want to be able to share that information.
States Needs Assessments as you’ve heard are on the web, on the Title V information site and you have that information in your packets. So if you are not familiar with what your state identified you can go right there. You can look at the list of seven to ten priority needs or you can read the entire Needs Assessment. And in some cases states Needs Assessments were very voluminous. I think I heard that, is there anybody here from Pennsylvania? I think that Pennsylvania had a four hundred and fifty page Needs Assessment. So don’t just press print but most states had a more succinct, but at any rate. And the thing is now that the Needs Assessment is done it’s not like okay, you know, that’s done, put that on the back burner. It’s really that the Needs Assessment is the place now for states to begin to address these needs.
How are they going to--now that they have priority needs identified, what are they going to do? What is the direction going to be? What are the partnership opportunities going to be? Because states are going to invest considerable time, effort and dollars in these performance measures over the next number of years. So these are really important for all of us to know about. And we may have things we want to contribute to them and I think there’s no question that we’ll have a lot to learn about what our state identified.
You know, and I know that when I was a young parent years ago and my world was only children with special health care needs, I didn’t really pay attention to that bigger picture. I didn’t really know, you know, what else was kind of important and I also didn’t always know that even though I had a child with special needs, my child has some of the same needs as other kids too. So it isn’t just, you know, it isn’t just that special needs part; it’s the whole shebang that really is important to know about.
We’ve been trying to read some parts of states Needs Assessments and I think I’ve gotten through about half of the states and three things kind of jumped out to me in looking at the public input sections. But first is that most states seem to really have begun their Needs Assessment several years ago. They didn’t wait until this last year to do it. You know there might have been one or two that did something that was really kind of quick but I don’t think so. It looks to me like states really began a few years ago putting together their planning teams, doing focus groups, deciding in a very kind of thoughtful way what they were going to do. They put a lot of energy and a lot of time and effort into these.
Secondly, many states commented and I think actually Maria, you did too, about how differently they were doing the process this year. And many mentioned that they had a lot more partners involved in the process including some not so usual partners.
And a third thing that I was noticing was that how many states said they intended to keep the process going, that is they had perhaps identified stake holder groups or other kind of ways that other groups participated and that they intended to keep that aspect of things going because they found it very valuable. And some of them named specific dates, you know, we are going to meet in the fall of 2005 or the winter of 2006 to, you know, to keep on engaging, to reengage the groups that had been so useful to them in the Needs Assessment process.
So states had you heard were to identify up to ten priority needs and they had to identify needs for all the populations that they serve. And you remember from the earlier presentation, you know, that means children with special health care needs, children, women and infants.
Once these needs are identified the Maternal and Child Health Bureau kind of tags them with what’s called a key word. And some priority needs have in fact several key words; there are about 35 of those key words. On one of your sheets and it is the, I think, the green one, is it? The green one lists the key words that kind of top needs identified. And this really only a kind of little indicator. So for all populations, the whole shebang, the top needs were in the area of primary and preventive care. Because 153 priority needs were identified that fell into that kind of category. And the next highest was health promotion; a third was access to health care. I’ll give you some if you don’t have it. Okay.
A fourth was morbidity and mortality and a fifth was mental health. So that was for kind of the whole population, those were key issues that were kind of noted at the top by many states. That doesn’t mean your particular state chose those measures but there’s a good chance that your state might have.
For children with special health care needs, the top five needs were, and it’s on the reverse of that page, the highest needs noted were for service coordination, so care coordination. The second highest was access to care, a third was family support services and a fourth was primary preventative health care, that might be like medical home or, you know, other things relating to that area, and a fifth was health promotion. So these are kind of interesting for us to know, what did the nation at large identify as needs, as key needs.
A couple of points to keep in mind, first is that, you know, you can look at these online, you can look at these key needs by population groups. You look at them by any of those, you can look at them by children with special health care needs, what were the top needs and they are here. But you can look at them by other populations too. You could look at them by Hispanic or Black or some other diverse population. You could look at how many related to men or fathers and you could do some kind of combination, like if you wanted to look at how many related to Black infants or something of that nature.
An interesting thing for you to keep in mind if you are especially interest in children with special health care needs and this was something that I think both Eddie and Maria kind of brought out, is that children with special health care needs are also part of the population of children at large. So if you are interested in kids with special needs you don’t only want to look at the measures that say children with special health care needs, you want to look maybe also at children because children with special health care needs are part of that whole larger population group.
If you are interested and in a particular area, and we had several people mention other areas that might or might not have shown up, we heard people mentioning child care, we heard people mentioning genetics. If these don’t show up in your state as one of the top needs then you might want to think first of all, might these be listed in some other way, you know, is there one of these other key word categories that these needs might relate to.
Two examples, for instance, if you were interested in car seat safety, seat belt safety, that would probably show up under intentional/unintentional injuries, I think. But also, one of the things that was pretty clear was that states had, as they generated, as they determined what would be their ten priority needs, states typically generated a lot of ideas. It wasn’t hard for them to come up with needs, right? There were a lot of needs. And so states typically had to winnow these down to get to what were the top ten. And if there was an area that they already were going to be addressing then they might have made a decision, okay, we’ll put that aside because it’s already going to be covered.
An example of that might be, I think for anybody involved in issues for kids with special needs, the area of transition is, you know, like a mega need. And that is already, transition for youth with special health care needs, is already a national performance measure. So in some cases a state might have said, okay, we don’t have to include that in our top needs, because we are going to address that. So you have to kind of think about this and how states might have viewed that.
Obviously there are many, many needs that states are going to continue to address even if these did not make the top ten. And so you really probably want to ask, you know, don’t just assume that a need is no longer important or that your state isn’t doing anything. You know just ask, you know, where does it kind of fit.
And I’m going to turn this over now to Ruth Walden and she’s going to share a little bit of information about how families, what we know about how families were involved with the five year Needs Assessment.