AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
CASSIE LAUVER: Thank you Betsy, good afternoon everyone. I’m Cassie Lauver and as Betsy said, I direct the Division of State and Community Health in the Maternal and Child Health Bureau. And, that is the division that has the oversight of the Maternal and Child Health Block Grants in the states and we work with all the State MCH and Children with Special Needs directors. And, that somehow internally, and this happened before I came there, our acronym became DSCH and I try to avoid that because most people have no idea what that is when we say that. And, we work a lot with other units in the bureau and work a lot with the Division of Research Training and Education, which is DRTE and so they always refer to us as DRTE DSCH when we’re presenting together and it just doesn’t work. I’ve been directing the division for about five years and before that I had the Oversight and Maternal and Child Health, as well as Children With Special Needs Program in the state of Kansas for about 20 years, and so I’ve worked very closely with families and many of the directors for many years, and Dr. McPherson as well, and so I’m very pleased to be here today. And, Betsy had asked me just to talk briefly about what some of the activities are around the state needs assessment, and what the family role can and should be as part of that process in the state. As well as to the overall ongoing Program Block Grant application and annual report process.
So, first, and I apologize that I don’t have some of the handouts, but I can let you know where some of the information is that I’m going to refer to. And, first is, as you may or may not know, the Block Grant, Maternal and Child Health, Children With Special Needs is Title V of Social Security Act. And, so there’s language in that legislation that requires, and it’s in section 505A1 of the Block Grant and the law for the Block Grant can be found on the MCHB website. There’s a link there. If people are interested in going in and printing off all of the legislation, it’s 505A1, states that in order to be entitled to payments, a state must prepare an application that contains a statewide needs assessment to be conducted every five years, and that shall identify the need for preventive and primary care for pregnant women, mothers, and children up to the age of one.
Preventive and primary care services for children, and services for children with special health care needs as specified in 501A1D, and that’s the language that I know that you’re all familiar with that calls for the role of Children With Special Needs Programs to provide and promote family centered, community based coordinated care for children with special healthcare needs, and to facilitate the development of community based services for such children and their families. And, that’s the language that for those of you who have been around long enough when Surgeon General Koop was around, actually I think saying this to what was Meryl, I can’t remember what—
MERYL: The Battle Hymn—
CASSIE LAUVER: The Battle Hymn of the Republic that’s right. So, that is a mantra for this program and that’s the site and the relationship in the law relative to needs assessment. So, in fact, all states provide an application and an annual report. They file that with us every year on July 15 th and we go out in the field. We, being staff, project officers from our division go out and review that, along with other outside reviewers, including families that have, have been trained and have worked with us for many years in doing a review. So, this year is the fifth year, or actually, would be considered the beginning year of a five-year cycle. So, all states are going to be submitting to us a needs assessment with their application and annual report, on July 15 th. So, let me talk just a little bit about the needs assessment, and I think Betsy handed out as part of her attachments, a section called Needs Assessment, and that comes from this document, this is the application guidance for the Block Grants. So, there’s a lot involved here for a Block Grant. And, part of this talks about needs assessment and in there, there’s this diagram which maybe on the very back of what Betsy put together, that is a conceptual framework that we use relative to needs assessment.
And, as you can see it begins with needs assessment, examining capacity, selecting priorities, setting targets, identifying activities, allocating resources and monitoring progress, and there’s several loops in there as well. So, it refers to a continual process of looking at what’s going on and how one comes back around to see if you’re making progress, what you need to do if you’re not. And, probably one of the most important concepts in this is that it’s not linear, it’s a cycle. It’s not intended to be a five-year needs assessment at a point of time and that the states don’t go back and review their needs assessment for another five years. It is intended to be a continual process and we ask them at review each year to provide us updates in what they’ve done relative to their needs assessment. So, I think we had a little bit of miscommunication in exactly what was going to be handed out to you. And, what you don’t have is a little bit of summary about what have, all of the stages are and, again, the Block Grant application guidance is also part of our website, which is www.mchb.hrsa.gov, and this guidance is on there.
So, if you want your very own copy of this massive document, you’re welcome to go on there and print it out and look at it, but I do want to go through a couple of these steps because I think that there are some that have relevance to the input that we can and should be getting from families in the process. So, first is needs assessment and I talked to you a little bit about what our conceptual framework is about that. And, the second is examining capacity. The language that we have there talks about in that state of the cycle we’re examining capacity, not just on individual issues, but on levels of the pyramid. Who in here is familiar with the pyramid that MCH uses. Most of you are or some of you are at least with the pyramid the top being direct services, then enabling services, population based services and infrastructure services at the bottom. So, it really is an expectation that states look, when they’re looking at activities and they’re looking at needs that relate to any of the population, that they look at all of those levels of the pyramid that, in fact, most importantly with children with special needs in the language, is the development of a system of services, that there’s really a strong intent to look at a system of services that serve children with special needs and their families.
So, that bottom level or the foundation of the pyramid is particularly critical for that particular population. Also, as part of the needs assessment, we have done extensive training and technical assistance with the states last year because it’s been five years since they’ve submitted a needs assessment, and this is actually the third time that states are submitting a needs assessment, so it’s been 10 years since we’ve had this function out in the state. And, the first year I have to admit, and I was in the state at that time, that it was really kind of a data blitz, dates through every piece of data they can possibly find into their needs assessment. There wasn’t a lot of analysis of the needs assessment or what the next steps would be; how they would identify priorities and how they would develop activities around those. The last five-year needs assessment that was due in 2000, states were much better about that, it wasn’t just a data blitz they spent good time in looking at analyzing those data and linking it to priorities.
So, last year states are able to give us requests for technical assistance, and almost all states asked for technical assistance around their needs assessment. So, we put a team together, we went out on the road, and we provided in four different locations technical assistance around the needs assessment. And, what we really focused on in that event was looking at so what, you’ve got your data, you’ve analyzed your data, what are you going to do with it? How should states be looking at setting priorities? And, one of the critical pieces of that is how do you reach out to the stakeholders to bring them into the process at that point, and have them help the part of the process that are looking at identifying the priorities that they want to be addressing in the states, identifying activities, and this is very critical and I think an important piece, families are part of that stakeholder group that should be brought into the process of any states needs assessment, so they can have input at that particular time if not earlier ongoing that once people have looked at their data, they can be part of the competing interest, because we all know resources are tight in some places and unfortunately, there needs to be competing attention in terms of establishing priorities, developing activities, and that’s what we worked very long and hard with states in terms of looking at how best to incorporate all of the stakeholders, including those that represented families and the constituency that will be touched by this particular process.
And, in doing that, part of the needs assessment as well, as you probably know, there are 18 national performance measures, five of which at least at this point, and I think Dr. McPherson is going to be talking about this in a little more depth, the Children with Special Needs Performance Measures, there are five performance measures in the current Block Grant Application that addressed children with special needs, and for those of you that aren’t familiar with them, I can just read them quickly. One being the percent of children with special needs, age zero to 18, whose family's partner in decision making at all levels, and are satisfied with the services they receive. The next is the percent of children with special needs zero to 18, who receive coordinated, ongoing, comprehensive care with the medical home.
The percent of children with special needs age zero to 18 whose families have an adequate private or public insurance to pay for these services they need. The percent of children with special healthcare needs zero to 18, whose families report community base service systems that are organized so they can use them easily. And, finally, the percentage of youth with special healthcare needs who receive services necessary to make transition to all aspects of adult life. So, the needs assessment should incorporate and address these national performance measures to some extent. The data that states use to put in their Block Grant Application relative to these performance measures are, the data are coming from the National Survey on Children With Special Healthcare Needs, and states with that not only do we pre-populate that data in there, although states may choose to use another data source, I think most states do use this, with the exception of a few that have done their own survey work, but we pre-populate it.
There’s an expectation that states talk about their activities to one, tell us what they’re doing in each of these areas, where there may be deficiencies, what their activities are going to be to address and improve the status in each of these performance measures. The only one that, of the six national Children with Special Needs outcome goals that isn’t captured in these six is one for early and continuous screening. And, at this point, the only proxy that’s in there is the newborn screening, and one thing that will be happening in the near future is these guidance’s have only three years of clearance through O&B. They require a certain governmental review before we’re allowed to send them out to states. This one is good through next May, so in fact, the applications that states are submitting this July will be the last ones that they submit on this guidance. We’ll be pulling together a work group to help us look at reviewing the current application, what revisions that we might want to see, particularly focusing around performance measures, but it will give us an opportunity to go back and look at the performance measure that we may want to develop and have more time to develop that will capture the, the sixth goal, which is the early and continuous screening.
And, we will have representation from state programs in that advisory group as well as representation from families, academia, other organizations to help guide that process. So, the needs assessment itself should have a direct relationship to these performance measures. Another piece that we really do want states to look at is in their priorities. It is appropriate for them to look at priority needs, state performance measures, which are also required; states are required to submitted seven to 10 state specific performance measures. And, these are performance measures a state might development that address priority needs to the extent that they’re not otherwise addressed in the national performance measures. So, this is another opportunity for all stakeholders, including families to work with their state application process, to look at priority needs and develop performance measures that may, in fact, be important and not otherwise captured in the national performance measures.
So, a little bit about how we see family involvement and one, of course, is as a stakeholder, within a state in that process, in addition, Betsy came to me several years ago and there is a requirement in the law as well relative to public input. And, I don’t have the language here, but I have the law and it’s in there if people are interested it’s actually very general. But this is another opportunity that families should know about and that states should be looking at getting public input from a broad group of individuals. Now, Betsy who is very familiar with our review process and has reviewed for many years, pointed out to me several years ago that not all states have a lot of strength in public input. Some states may be doing very, very well about having focus groups, all sorts of activities to provide input because it is, by law, a requirement.
Some states may be more perfunctory in their ability to get input. They may post it after the fact, which really isn’t input to the development of the application, but they make it available in state libraries and they may post in the state register that this is available, while other states are really much more proactive. So, in response to Betsy’s comment to me, it is something that I developed in the template for reviewers to go out to focus on that during review and see what states are really doing, and making recommendations about whether they think that they might need to be improving and strengthening that process. The second piece is that I have a contract out right now with an individual to go look at all of the states and jurisdictions section as it addresses public input, to do a summary that might be available and helpful.
One is for the reviewers when the go out to review, so the know what other states are doing, and to perhaps come up with something that might be promising practices, that this state does this activity and this activity and this activity, and I think states would embrace knowing what some of the other states do and would be perfectly happy and willing to incorporate some of those activities that other states may be doing really well into their process. And, again, it’s just an opportunity and a way to start trying to enhance and improving the input vehicle, and not just after the product is developed, but way in advance. So, we’re looking forward perhaps in April to have that finalized summary. We’ll be making that available and certainly incorporating it into the review criteria. Another area that we’ve really looked and reached out to families is in the review process as well, and Dr. Van Dyke, who is the associative administrator of MCHB, Maternal and Child Health Bureau, I think, has championed this for many years, and developed a system or made it critical that we involve parents in the review of the Block Grant Applications. Who here has actually gone out in the field and reviewed?
We have a few people that have reviewed, and really appreciate. You know that it’s a lot of work to go out and review the applications, and we just had one of my staff that, part of the Family Voices meeting last week did some additional training. And, I think this year’s reviews are going to be challenging for everyone because it’s not just a review of an interim process from a state, but it’s actually the beginning of a five-year period, and that we’ll be looking at the whole needs assessment. So, it will be challenging for all the reviewers to do it. Really I just had one other comment and I was hoping Nora Wells might be here, I asked Betsy, but she’s not. But many of you are familiar with the National Survey of Children With Healthcare Needs, and how we use it and some of the data that came from it. And, in our skills building session yesterday when we were working with states about any revision to the web-based application process, Nora and another individual from the CAME, Child Analysis and Health folks from the University of Oregon, who have developed on-line tools that are available to look and query some of these data indicated that some of their requests had come in from what, and what caught my attention was that there apparently had been a request from families, relative to what their role might be in the needs assessment process.
And, I was really hoping that I could touch base with her a little further on that to find out myself and have that as a resource, but that would be something that I’ll try to catch up with her later in the meeting and see if we can provide some more information or how we could provide some more information on that. But I think we’ve progressed over the years in involving families, and we really want to continue working and integrating that valuable resource into the process. I’ve seen, I was in the state when the bureau first started encouraging families to be part of the Block Grant Application and review process, and I think it has really enhanced the, not only the review, but states have been responsive to the input and the feedback that they receive in families, and I think it’s really been a strength in these programs, and one that we really haven’t seen in a lot of areas outside of maternal and child health, and we encourage our partners in SAMSA and some of the other areas that have programs that address this population to develop a model similar or incorporate that philosophy into their reviews. And, we will continue to improve and incorporate these points in our process. So, Betsy let me turn it over to you.