AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
MERLE MCPHERSON: I need a further, give me an example of what you’re asking.
UNKNOWN SPEAKER: Our goals that we set five years ago (inaudible).
BETSY ANDERSON: We didn’t have the same goals.
UNKNOWN SPEAKER: Our previous five years, were the goals accomplished?
UNKNOWN SPEAKER: Everybody is state by state really.
UNKNOWN SPEAKER: And we changed them.
UNKNOWN SPEAKER: See what five are setup for each state (inaudible) there’s a website and look and see because each year as the Block Grant goes out you report on what you did and the purpose of your goals and your objectives from last year so that’s all I have to (inaudible).
UNKNOWN SPEAKER: There’s 18 performance measures though that every state has to meet these 18 performance measures and there would be information that correspond to nationals still.
UNKNOWN SPEAKER: These 18 performance measures.
BETSY ANDERSON: Right.
UNKNOWN SPEAKER: You can find that information on the MCHB Title V website. They have a report out on that. Every year they have to do a progress report and you can find how well they have met their support (inaudible).
UNKNOWN SPEAKER: That’s actually a tough question. I think, stump the panel on that because the one that, the ones that directly relate to children with special needs—
BETSY ANDERSON: Got changed.
UNKNOWN SPEAKER: --and last, for the last, this will be the second year actually that they shifted and you used the performance measures that related the work that Dr. McPherson did relative to the 18 goals. And it is correct that for all 18, all of those data are available on the website. But to be honest, before we changed, it was difficult for states to score on some of those that were children with special needs specific. And some of them were self-assessment. There’s, you know, so all those data are in there. Whether it gives you a really good picture and that’s one reason that we moved to looking at performance measures where there were data sources that could actually link with those that we at the federal level and states had more comfortable feeling with those, really were capturing and measuring activities. And so they, these are stronger that we have now. There are data sources that will help support them, but there are data that existed before. A lot of it was self-assessment.
BETSY ANDERSON: So this whole performance measure process was a new one for states. And for states to try to figure out what data they had access to, could they really carry out these performance measures, this has really been an evolving process so the measures for children with special health care needs are not the same ones that were in place five years ago. Some of the other measures, the other of the 18 are the same and those may be changed in the future.
Yes.
UNKNOWN SPEAKER: I’m from Minnesota and I can’t—
BETSY ANDERSON: Oh good.
UNKNOWN SPEAKER: Number one, we have completed our process but there’s an element to it that you haven’t described and that is development of the same performance measures to accompany the new priorities and that’s going to be very, very critical input by parents.
BETSY ANDERSON: Excellent. Excellent point. And do you have some ideas about what your state is likely to address in those state performance measures? You’ve already got them.
UNKNOWN SPEAKER: This comes under the heading of management delegation. I have fortunately very intelligent, wise, and experienced staff and they have that measurement and I’m not by training and (inaudible) or genetics predisposed to data and (inaudible) evaluation. But I am aware that (inaudible) gets measured gets done. And that’s what becomes important and as you go through that process as the Title V agency as a whole, the (inaudible) gets 10 priorities of which some will be directed towards children with special health needs. (Inaudible) that there begin to monitor that over the next five years. I think it is probably more important than what (inaudible) primary (inaudible) per say.
BETSY ANDERSON: Thank you for that addition. So just to reinforce, there are 18 national performance measures, Dr. McPherson was talking about the first six of those and those are the same across states. But there are seven to ten state performance measures which states select based on what they see as the needs in their state. So those will be coming up with kind of I think we heard yesterday, a clean slate and states may address some of the same state areas, performance measures they addressed in the past or they may find as a result of their needs assessment that they need to address some different new areas. So he’s suggesting that this is an important area for families to participate in and to help weigh in on.
UNKNOWN SPEAKER: Patsy, could I just comment on there. I think it is important to think about the process, that process and how stakeholders are involved because my experience of doing that at the state level and I think I really shouldn’t, that is a competing exercise because you’ve got people who represent injury prevention and prenatal care and children with special needs, all coming together to look at, identifying those priorities. We don’t ask states to rank their priority needs. So just because something is number one doesn’t mean it’s the most critical issue. So, nor do we, we feel like these documents belong to the state and at the federal level we ask them to report on seven to ten. That does not mean that the state can’t look at a broader set of priorities from the state and I think you’re absolutely right. What you measure gets done and so there’s nothing that can prevent a state from having a broader version if they want to develop performance measures around so that you can monitor it and that’s something that you call can bring to the table as well and suggest. If they want to limit that and you feel like you’re not being well enough represented and that practice that you might suggest in their document that, that it’s broader than what our requirements are to make sure that performance is articulated around those priorities that you think are important.
BETSY ANDERSON: Other comments or questions? Yes.
UNKNOWN SPEAKER: Could you please mention the six core actual goals in the present initiative that you do as you worked with one in the address?
UNKNOWN SPEAKER: You want me to go over those?
MERLE MCPHERSON: Family-to-family health information please. They’re written on the back of those. There we are.
BETSY ANDERSON: Oh yeah, right there.
MERLE MCPHERSON: You want those six goals repeated.
UNKNOWN SPEAKER: Yes.
MERLE MCPHERSON: Families and providers work together as partners in all levels. Number two, children have access to ongoing comprehensive healthcare through a medical home. Three, children and families have adequate sources of financing for the services they require. Four, children are screened early and continuously for special healthcare needs and receive early intervention services. Five, community services are organized so that families can use them easily. And six, youth receive the services and supports necessary to transition to adult healthcare, work, and independence.
BETSY ANDERSON: And if you didn’t have a chance to get all of those little words down, we will be happy to let you come copy these. And there also very well available on the family voices website, on the MCHB website and many other places at this conference. In fact, you can stop by the Family Voices table and we have materials there. Is there one other question? Yes.
UNKNOWN SPEAKER: I just have to comment, I think the other documents may be helpful. Each state for special needs program has a state plan has developed over the years. And I think connection with those roles that pour goals into state plans, stuff will go down, at least become involved with it. So ask for that state (inaudible). That’s part of our special needs.
BETSY ANDERSON: Okay. Excellent idea, good idea. Other, is there one last question before we break? Okay. Lets take, let me see, it is, why don’t we plan to meet here by five after two , but lets ask the family mentors and the family scholars to gather somewhere, right back there. Right back there and so they will carry out their activity and they might get a little break too and we’ll gather back here for the small group discussions, which will be organized by these six core measures. Thank you.
BETSY ANDERSON: That you are busy talking and networking like we hope you will, we want to get you onto the next task. And in this part of the session this will be an opportunity in small groups to discuss how the needs assessment is being or might be being carried out in states. So now, can I have people’s attention so that we can get oriented and make sure that families know where they, where they would like to go. What I’m going to do is, I’m going to read the dynamic duo for each performance measure and ask them to hold up their hands or stamp and cheer or something and then if you would like to choose that table first, you go to it.
In about 20 minutes we’ll ask you to switch so then you’ll have a chance to go to another performance measure too. And the idea is to share ideas and experiences. Some people who are already involved with the needs assessment will have a chance to share what they’re doing in their state, how they’re approaching it. If you don’t know what’s happening in your state, this will be a chance to think of ideas to learn maybe from what others are doing. So lets see how this goes. We know there will not be a chance for you to get to every table, although you might be able to get every table’s handouts. So it’s going to be twenty minutes and then we’re going to let you know and then you’re going to, musical chairs, you can change to a new performance measure. So at round table one, the topic is all children with special healthcare needs will receive coordinated, ongoing comprehensive care within a medical home. So this is medical home and this is Chuck Onufer and Rodney Farley. Okay?
So that is, this is the table over here against the wall. The second round table is all families of children with special healthcare needs will have adequate private and or public insurance to pay for the services they need. And this one is Susan Colburn and Michelle Cravitz. And here they are the opposite wall. Sounds like they’re ready to square off. And they have I believe treats on their table. All right, and the third round table is all children will be screened early and continuously for children for special healthcare needs. And the duo there is Carla Sandwell and I’m having trouble reading this, oh Catherine Shevaria from Arizona , yes. So where are you? Right here. Right here. And the fourth is services for children with special healthcare needs and their families will get, services will be organized in ways that families can use them easily. This is the one I believe Meryl told us was the hardest one. And it can be done and Sooman Marks and John Hurley are going to talk with you about how. And you can contribute your ideas also.
The fifth round table is families of children with special healthcare needs who will partner in decision making at all levels and will be satisfied with the services they receive. And this is Maria Nardella and Ruth Waldon. There they are, right there near the door. And number six, all youth with special healthcare needs will receive the services necessary to make appropriate transitions to adult healthcare work and independence. Jim Bryant and Bob Cook. Okay, so we will remind you in 20 minutes. So choose your table and in 20 minute or maybe a moment or two before that we’ll remind you and then at the very end in an hour, depending sort of what time there is, we may ask these leaders to report back. If we don’t have time we won’t do that at this session. So go to it. Okay, okay. This is your time to end this round table and make your last choice, so make your last choice and for the next 20 minutes you can, you have a chance to choose one more performance measure area. Thank you.
You have five minutes to finish up your discussions in these groups. So five minutes to go. All right. It’s the witching hour. Time to emerge from your groups. Time to sort of turn your attention, think about what you’ve been talking about and learning. Time for our groups to be ending. I know, now that you’ve just gotten into these groups and into these discussions we want to pull you out and I think every group had handout materials on their tables. And if you, since you didn’t have a chance to get to every table, every performance measure, we hope you’ll have a chance to touch base and grad some of those materials and I think we also hope that you can continue some of these discussions at the family meet and greet or at the family touch points or other moments throughout the conference. And I think we as in the groups I was sitting in, I could certainly hear talk about what states are doing in their needs assessment.
I could also hear a lot of talk about best practices or certainly good ideas. And it was certainly striking to me that I was thinking gee, there’s so much conversation. You could see people were pretty excited thinking about this chance to really talk on a kind of, in a small group way about ideas and programs and practices, and it makes, certainly makes me think, you know, gee, it would be really exciting if this had an opportunity to continue in our states with other families who aren’t able to be here with us. Now I think we thought that there wasn’t probably quite enough time to ask every group to give us a report but would, are there, would anybody like to comment on something they learned or John?
JOHN: Actually it was a question they wanted to actually outdated.
BETSY ANDERSON: OKAY.
JOHN: This will be up on, this will be up on the web but is there a way that we could have the handouts posted also?
UNKNOWN SPEAKER: Yes, I can get them from everyone.
JOHN: Okay.
Betsy ANDERSON: That’s a great idea isn’t it because other people who, that means that’s something you could refer to back in your states. Is there a comment from any of the groups along this right hand side, anything that anybody learned or a good idea or an important topic? A lot of good conversation and-- Other comments that anybody would like to make about this process or something you learned or something you want to continue talking about? Yes.
UNKNOWN SPEAKER: I think just, I got stuff out of every one of the discussions, but I think the transition discussion is probably the most important for me. One for the fact that my son is almost 17 and transition is never addressed in any aspect of his life. And the guys up there at the head table did some real good discussion and it kind of was nice to hear from professionals that felt that transition was just as important as I do as a parent.
BETSY ANDERSON: Great. Great. And did everybody feel they could grab onto part of the discussion, there were things you could offer, thing you could ask? Looked like it was pretty interactive. Is there another comment that anybody would like to make? Rodney?
RODNEY: Well, some people have already heard this comment if I can’t get our Medical Home Group over here, but as family members, the families always sit here. And that can, with these six things that we’re talking about, these tables, you can go back to your state and contact your children with special healthcare needs directly and see if they have committees being able to participate on those committees with them. And you know, be sure and share that, now this lady here, I’m sorry, Christine Chrisman, she was really interested in the Medical Home even though she didn’t work in the (inaudible). She works in our research and insurance and things and she is real interested in, you know, finding it back in her home state about the Medical Home and do they have parents involved and things like that because she has an interest in that. So just, you know, that kind of testimony right there is what we value as really confused about back in your state and try to get more involved in that (inaudible) professional part that you feel it is.
BETSY ANDERSON: Great. Thanks Rodney. And also you make a pitch if your director or somebody from your program is here at AMCHP, which is highly likely, you can talk to them, you can begin that conversation right here and also I haven’t finished reading my whole program yet, are we having regional breakfasts.
UNKNOWN SPEAKER: Yes. Tuesday morning.
BETSY ANDERSON: Tuesday morning there’s a regional breakfast where so not only people from your state but people from the nearby states in your region will be present. So that might be a good opportunity too. So I think we hope that you feel sort of confident, armed, ready to go, when you get home to get involved, see what’s happening in your state, see what, because this is, as Cassie told us, this is an ongoing continuous process. States have to turn in this evaluation in July but even after that there will be ongoing activities. There will be as John reminded us, states will have selected performance measures and activities all the way along for the foreseeable future there are going to be activities going on that relate to these measures. So you should feel that there’s some way that you can get involved. Yes.
UNKNOWN SPEAKER: I just wanted to add got with (inaudible) handouts. So for our family this decision makers, I did bring up, what we’re trying to do is actually for each national performance measure, so I brought the one on families those decision makers just to show our score in Washington state, so if you’d like a copy of that, it is kind of a draft but I think it helps. And for some of the people who are in our group they said, you know, how can I find out how my state did? So that website’s on there. And then I brought practical tips and value family consultants and programs in house of development together where you get families involved in that decision-making. So if you’d like one of these, please come by on your way out.
BETSY ANDERSON: Great and I’ll just make a little pitch, if you have other materials and you want a place to display them or for others to pick up, you can come bring them to the Family Voices table if you’d like and we’ll be glad to kind of put things out there, because that will be a place a lot of families will gravitate to. Any other comment here? Dr. McPherson? Any, is there any comment you would like to make at this hour before the family meet and greet, not that you haven’t already met and gret I guess.
UNKNOWN SPEAKER: Evaluation.
MERLE MCPHERSON: Oh evaluations. We do want the evaluations in. And I just want to thank everybody for taking the time to engage so fully in this. Understand from our perspective at the national level that much of what we have done through changing legislation and doing demonstrations is over. We know what should be. It is implementation time at the state and community level and we are very dependent upon the states and the leadership role that you are taking in terms of taking those six performance measures, developing that into community system of services if we are to achieve what our legislation says. It is different than so many other programs that begin as demonstrations at the Federal level. They do the demonstration. You get six good models. We declare ourselves a success and we move on to something else. We cannot move on to something else. This is implementation at the state level. I am very impressed with all the work that is going on.
I think collector sharing across the states will be incredibly helpful over the next number of years because you’ve all got good ideas. You all do different things in different ways. And we’re really trying to restructure our work from the Federal level so they were much more responsive to the question of what do you need to do to implement these services and supports? I also think it’s incredibly critical over the next few years that we really do keep our feet to the fire at that service and system level, the supports that are needed because of the concerns of the shrinking dollars. Don’t let them shrink at the service level, at the systems level and so working together to try to put those programs together may help protect some of the things that you’ve developed over the years. Thank you very, very much.
BETSY ANDERSON: And thank you families and thank you Title V professional partners. This was really a very energetic session and it will be great to see things on the website and to hear what continues. So thank you. Thank you AMCHP.