AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
BETSY ANDERSON: Thank you Cassie. I don’t know if you’re getting this message, but I think for state programs the type, the five-year Title V Needs Assessment is a big deal. Are there people here from state programs and are you hearing this, are you? Yes. States are going to base a lot of their activities on what they find as a result of the needs assessment. So, it really is important that Cassie told us, this is a continuous ongoing activity, but states really have to do a lot of the collection and the planning right now to turn in July. So this means, to me, that as families it really behooves us to understand what’s kind of on the agenda there. I think we can be better partners when we understand what’s on our partner’s agenda. And, I just wanted to mention that if you or others in your state, families or other need basic beginning information on Title V, we have a new booklet and there are quite a number of them in the back of the room. And, so we’d love to have you take these.
We hope maybe you’ll only take one a piece, but we have more at Family Voices, in our Boston office. And, we will be glad to get them to you or the Power Point. And, this gives a little overview. It has things like the pyramid that Cassie mentioned and other basic Title V concepts. But today we’re thinking about the five-year needs assessment, and I think what you know is that Title V needs to look at the needs assessment, think about, carry out the needs assessment in terms of the three population groups. And, the three MCH population groups are pregnant women, mothers and infants, that’s one group, a second group is children and youth, and a third group, the one we’re focusing on here today, is children with special healthcare needs. So, your state will be thinking about needs for all of those populations, and will be thinking about them in terms of levels of the pyramid.
Now, what as families, should we be doing, what do we need to know? In some ways this sounds a little bit like, well, this is kind of a professional thing that the Title V Program will be doing. But I think what we really want you to think about is that you have a very important role and possibly, in fact, many different roles that you could play within your state. And, I think it’s really those three eyes, that is, I think, as people who kind of live the experience, you have ideas, you have all kinds of thoughts about data. You know what’s on family’s minds, and you might have ideas about how to collect information or methods to use. You might have any number of different kinds of ideas that would be helpful and that would, you know, be important for your Title V Program to know about. You also increasingly have information and data, I think in the past this wasn’t so much the case, but now we, as families, are much more kind of organized and much more systematic about what we’re doing.
So, we actually sometimes know something about the families who are calling us, what’s on their mind, the professionals who are calling us. That is important information and your Title V Program very much would like to know about that. Thirdly, you really have insights. It’s just amazing sometimes, I think we really respect the vantage point of all the different players, but you see, I think, when you are looking at data from a survey or other kinds of information, you think about, oh, what does this mean for families or how will families understand this? Those are very important insights for your Title V Program to know about, either in the way that they interpret data that they collect for the needs assessment, or in terms of the way they portray the information and share that information.
So, first of all, as background, you’re getting really quite a lot of information and we’ll get more as the, as this session progresses. But first, you might want to learn a little more about what the specific requirements are for states for the Five-Year Needs Assessment and as Cassie said, we’ve got a little handout here, but there really is more information. On this yellow sheet, partway down under background there is a website, and I think as she was kind of cluing you in, don’t print this out without thinking about it first, because this is a very big document and it contains much more than just the needs assessment. But the needs assessment begins on page 24 of that document. So, you could read through that and kind of get a sense, because really a lot is asked of states, and if you wanted to you certainly could print out, you know, whatever parts you want there. You also will want to find out how the process, the needs assessment process is being carried out in your state. And, key here is that you want to talk to your Children With Special Health Care Needs director or possibly your MCH director.
Now, it’s very likely that this process is well under way. How many people here are involved with needs assessment in your states right now? So, a good proportion of you, yeah, quite a number. I would guess that in a lot of states there’s probably a committee or something set up, is that the case for a number of you? Yeah, and there may be sub-committees, states can set it up in the way they think is best, but you could certainly find out how is it organized in your state and then you can ask how are families included or how might they be if your state is one that somehow hasn’t quite gotten to that point yet. How many people are parents here who have had an involvement right now with their needs assessment in their state? So, I see, oh, a number of hands, excellent. So, that should give you some reassurance right there, but if you need more, the Title V Guidance asks states when they turn in their needs assessment report in July, states are actually asked to describe how citizens and families are involved in the needs assessment process.
So, this is a phrase that Meryl has used in other circumstances, it’s not just that it’s a nice thing to do to involve families, but states actually have to describe how they’re involving families. So, think about that and feel very confident and comfortable as you talk to your state about how they’re carrying it out, you know, how that is happening. Next, you probably really are going to want to find out about the content and the process, what kinds of data and information does your state need to collect. And, one of the things that might be interesting to find out is what your state is actually collecting now, and how they plan to gather or collect it. Are they going to do surveys? Are they going to do focus groups? What is in their minds? What is under way? And, you I think would have probably quite a good idea of what would be important for families, what would families like to see collected? What’s on family’s minds that should be tapped? Because if a particular question doesn’t get asked then obviously the responses won’t reflect perhaps an area that you think would be important.
And, one of the things that families, I think we’ve seen in the past can be very helpful in doing, if your state is doing focus groups or questionnaires or surveys, is to find out how the topics or questions are going to be determined. And, because families, you’ll want to be thinking with, you know, well, how important will these questions seem to families, are these framed in a way that would make sense for families? And, what isn’t being asked that you think should be? And, of course, how will families who participated in these focus groups or surveys get feedback? Will they learn what the needs assessment found? Those would all be things you could have some role in or could ask about. Another point is really thinking about the analysis of the findings, that is the states are going to collect a lot of data, and then they’re going to determine the significance or the priorities, and they’re going to think about it from a variety of ways, and importantly, of course, is thinking about it from a parent perspective, a family perspective.
So, how could families be part of this analysis or discussion? And, sometimes the needs assessment includes somewhat technical areas of data and research and statistics, and for some of us that’s not perhaps our first language, so thinking how the state could help us understand some of that could be very helpful. And, finally, as the needs assessment is being completed, it, I think you will find that it is quite a fascinating document. I think you will find amazing things. And, this is really very, very useful to lots of us. And, so, how can families learn about the fact that this needs assessment is occurring and kind of plan for its use? That is you might have a conference that you’re planning in the future. You might want to incorporate some of the information from your state’s needs assessment. And, how will this be publicized and made available within the state? Your Children With Special Healthcare Needs director might, you might want to see the whole thing or you might want to excerpt parts for children with special healthcare needs to make that available, especially if you have an advisory committee or a parent meeting coming up, and will there be opportunities for families to discuss that and ask questions about it? By I think we’ve heard from Chris that the data will probably be up on the website in the fall, this coming fall?
CHRIS: October 1st.
BETSY ANDERSON: October 1 st, okay, so October 1 st. So, you can also look, your state’s Title V Block Grant Application and report and this needs assessment will actually be up on the Title V website, and the address is here, it’s not what I would call an intuitive URL, it’s, so, but it’s here on this sheet, and you could actually see what your state submitted. And, finally, how families might use the information. This, I think, is an untapped area and something we should be doing more thinking about. First of all, you might think about, especially if you’re a part of a family organization, whether Family Voices or some other parent group in a state, it might help you plan and prioritize your activities within the state. For instance, let me just think of an example, for instance if you see on your state’s charts in their needs assessment that there are increasing numbers of Portuguese speaking families, but you’re not, you aren’t planning in workshops in Portuguese, this might be a little indicator to you that this would really be important to do.
It might give you important demographic information about where there are increasing numbers of families, where there are low-income families, all kinds of information that would help you be a better provider of services. So, I really encourage you to think about looking at that, because it’s a wealth of information, at least certainly the last one was, and I absolutely anticipate that this new one will be, too. Secondly, increasingly we as families are applying for grants. We have to be able to show demographic information, we have to be able to show needs, and so you can look, very easily look at what your state identified as needs or population numbers, and you can cite those in, you know, if you’ve got an application that you’re submitting, and this would be great to bolster your plan to provide workshops here or to do, you know, provide some other activity, you may well be able to use the information in the needs assessment. And, finally of course, most importantly that the information can help you advocate for the needs of families in your state, you know, that’s probably really key.
I think we’ve been feeling, you know, when we first kind of entered the picture as families, it was our family stories that grabbed everybody. Now, I think we know that it is the data in combination with our stories that help move services and care and policies along. So, think about how you can use the needs assessment to further services for children in your state. And, I wanted to mention, by the way, back in terms of collecting information, some of you are already part of Family Voices and part of the Family-to-Family Health Information Centers, this is just a fabulous compilation of data from those family-to-family health information centers. This is wonderful data. Now, I think any state would want to have this information to include in some way probably in their needs assessment. So, think about that, if you’re one of these states, obviously think about that.
If you collect data or might collect data, think about that, too. And, finally, the whole purpose of the needs assessment is really to help states serve children and families well. And, so, think about the data and needs assessment and the information being collected, and how it can help all of us as partners improve care, services and policies for our children and families. So, it will be fun to hear how, you know, how all of you have been involved and later, I think it would be great if we collected information. We’ve done this in the past about how some family groups have been involved, and I think we should do a better job of kind of keeping track of that, because I think it’s very helpful to us if we have models for, well several states are in, are contracting with family organizations to provide focus groups or to carry out a survey on X, Y, Z, or what are the different ways families are involved?
So, that’s something I think we’ll kind of think about collecting from you. And, now, we are going to turn this over to Dr. McPherson, and she will kind of focus us in a little more on those, I usually think it’s six performance measures, but it’s five plus another performance measures, and really help us kind of zero in on the needs assessment and how it relates to those measures. And, then after that, we’re going to take a break and then we’ll come back in our small groups. Thank you.