Plenary Panel - Research to Practice

Using Partnerships as Catalysts for Change

Vera F. Tait: Okay, when Bonnie asked us to talk about this, I was really excited to think in terms of partnerships. And some of you who were actually at the grantee meeting this summer know that we spent a little bit of time at that meeting talking about partnerships, and catalysts for change, those kind of things. I know that I’m preaching to the choir here, when I talk in terms of collaboration and partnerships, but as Bonnie mentioned, what we want to do today is think a little bit outside the box, and think in terms of partnerships with non-traditional partners. And some of this may, indeed, be not in the "non-traditional" realm for you all, but maybe some of you haven’t worked a lot with business associates, with a business school, or with managed-care organizations, so that’s what we’re going to spend a few minutes talking about. We’re also thinking in terms of, at this meeting, research to practice, so we know that early involvement of partners is critical, also data-driven changes. If we look at that, and we really make changes based on research, and based on data, and look at assessments, and outcome evaluations to make the changes in our systems, then certainly we have increased credibility, and we’re moving in the right direction.

This is my favorite, favorite, favorite Gary Larson cartoon, and you can see the little man running off, and the two bears saying, "I lift, you grab. Now, is that concept just a little too complex, Carl?" And I put that in because we can be here, and we can be at this meeting, and we can think that, "Oh yes, partnerships." And that’s so easy. One of the things that I think we all know, and the longer you do this you realize, that presence does not equal partnership. I’ve thought so much about that, because sometimes I think when we have people at the table, when they are in the meeting, then that means we’re partners, we’re collaborating, and we’re moving in the right direction. We may, indeed, be moving in the right direction, but it doesn’t necessarily mean that we are really collaborating just because we have a representative from a certain group there.

If we think in terms of partnership benefits, obviously what we want to develop are the ongoing relationships that are based on knowledge, and interest, and trust. True partnerships help broaden the scope of what we’re doing, and how we’re thinking. And let’s just get basic here, too. With real partnerships and collaboration, we can have increased funding and resources. And in this day and age, other than a couple of states, we need that desperately. And then we’re looking at sustainability. Well, this slide is busy, and I left it that way purposefully. So when we think in terms of crucial or critical partnerships, I just started listing some of the partnerships that I’m sure you’ve worked with at different times in your states. At this point in maternal and child health, and Title Five, when we talk in terms of partnerships with families, that’s a given. But it’s not so many years ago that that wasn’t a given.

And I think, I truly believe, that it’s been the Maternal and Child Health Bureau that’s really moved families into the center of partnerships, exactly where they should be, particularly in the healthcare delivery systems, and in what we’re doing with maternal and child health. When we think in terms of partnerships, we’re all asked to look at other state agencies. And again, I’m sure I don’t need to remind you of how difficult that can sometimes be.

If we talk in terms of blended, braided funding within the states, again given the economics of the states, people are trying to hold on to their money. And so I think it’s harder, at least in our state, it’s certainly become a little more difficult to look at other agencies, and really look at putting the funds together to look at systems of care for, particularly in my experience, for children with special healthcare needs. Later today we’ll hear about collaboration with universities, and I’m going to spend some time talking about that. Education obviously is critical. And we could go through the rest of the list, but for the rest of this hour we want to spend some time talking about particularly businesses, and what that means, and also a little bit about managed-care organization. So here are our non-traditional partners for this morning.

In thinking about what I could tell you about what’s happened, at least in one state, and in one division of children with special healthcare needs, I wanted to just remind you a little bit about LEND programs. And for those of you who are new, and we always have turnover and have new people here, and I was new about six years ago now, LEND stands for: Leadership, Education and Neuro-Developmental and Related Disabilities. And currently, there are 36 LEND programs in 29 states, and here’s your map of the most recent LEND programs. Many of you, particularly in the Northeast, have probably known, loved, and worked with LEND programs forever. But if you haven’t, I want to encourage you to become involved with a LEND program. In Utah, and we’ve been funded--this is going on our third year, it’s a little bit different.

I think our, the way we look at LEND in Utah, we have a partnership with Utah State University, the University of Utah, and our Bureau of Children with Special Healthcare Needs. So we work together in the LEND program. And it has been absolutely a remarkable experience, from my perspective, to be able to have such a close relationship with not only the universities, but also with the disciplines that are involved in LEND. Again, for those of you who have not had the experience, there are many disciplines that are involved in LEND, and I’ve listed the disciplines here. Everything from--sometimes we think in terms of OTPT speech, but look at the wealth of information, and potential collaboration you have, if you have a LEND program in your state. And some of you are fortunate enough to have two LEND programs in your state. So you have everything from pediatrics--here’s a clue: dentistry.

You know, when we think in terms of dentistry, and the needs, particularly with children with special healthcare needs and dentistry, what an opportunity to work with that discipline in a university setting, special education and audiology. And today particularly, again, we’re going to talk in terms of health administration. To let you know what happens with a LEND program, and in addition to just the interdisciplinary and wonderful training, what you’re looking at with LEND programs, too, are systems of care, and changes in those systems of care, and how you can do that. So you have, within a LEND program, discipline coordinators within a university setting, but you also have discipline and LEND trainees, and these are advanced trainees. So a lot of them have Ph.Ds; a lot of them have had world of experience, not only in a university setting, but in real-life practice, and they are looking at opportunities for leadership, clinical experiences, research experience, and also they also have to look at didactic experiences.

So you’re looking at at least 300 hours of learning, and interaction, and teaching with these trainees. So it truly is an opportunity, when we’re looking for collaboration, when we’re looking for people to work with us in a research area, or any other research--in leadership--I would say look to the LEND programs, and see what you can do. Within the last two years, and I just listed five examples of what we’ve been able to do. And again, I didn’t do it. The whole program did it with the partnership, just from the LEND interactions. We actually, one of the LEND trainees was an assistant administrator, essentially, in the pediatric nurse practitioner program at the University of Utah, and she changed the University of Utah curriculum for the nurse practitioners to include more about children with special healthcare needs, more about the medical home. Just from that interaction she did that.

We actually were able to work on the establishment of an interdisciplinary feeding clinic in a very rural area. Well, some of you here might not think it’s so rural, if you’re from Logan, but it’s a ways away from Salt Lake City, anyway. It’s two hours out, two hours out. Excuse me? But better skiing! We’ll talk later. We’ll talk later. We have, actually, one of the things that we’ve had to do, because early intervention in Utah is under children with special healthcare needs, and those of you who work with early intervention certainly understand the funding issues that we’re facing from that perspective. So we were actually able to look at the evaluation and implementation of parent fees for early intervention. Now trust me, we did not want to do that. We were guided by the legislature to say, "You will implement parent fees for early intervention." Well, we did that, but what we did with that is to have our business trainee be involved with us in that. And I tell you, without that person always saying, "You know what? Perhaps you could just look at how much money you need to make this program continue, and then divide it up."

Now, from maternal and child perspective, and Terry will talk a lot about that, we were understandably very concerned about what would happen to the parents, what would happen--how much dropout we would have, who would help the families that, then, would not be enrolled in early intervention. But it was nice to have the business perspective at the table to say, "That’s great, but here’s the bottom line that you need to keep looking at." And so it did actually help us, when we were looking at that. One of our trainees, our speech-language pathologist, actually came down from Wyoming, traveled over every week, and she is a representative in the state legislature at Wyoming, and went back to Wyoming, and actually reported back to us the changes that she tried to make, at least, in Medicaid when the session came on.

In addition you all know that all, many, or most states are concerned about what newborn blood screening to add in your states, and particularly the follow-up piece of that. And another place where business has been so helpful to us is the evaluation of additional tests to that, particularly when we were trying to decide whether we would add cystic fibrosis to the state newborn screening program. So it’s just a list of some of the things that you can look at in your states, and some of the help, and actually exciting changes that we’ve had in the state, just working with LEND. Well, if you don’t have a LEND program in your state, and one of the things that we’re anxious to look at, particularly in Utah, is working with other states around us.

Wyoming has been kind enough to let us come visit with them, and we’re looking at collaborative efforts along the lines of LEND to move forward in states where you might not have the LEND program. If you don’t have a LEND program, you do have a university center for excellence in you state, and we’ve been fortunate enough to work with the people at Utah State University, up in Logan--where they have better skiing--where they have some skiing. But we have been fortunate enough to work with them to look at a lot of different initiatives, particularly our medical home initiative. And just as one more example of that, in Utah we’ve worked with the Center for Persons with Disabilities, CSHCN, and Inner Mountain Healthcare, to look at medical home and what that means. Some of you are involved in the Niche Q Medical Home Learning Collaborative. If you are, you know that children with special healthcare needs, or Title Five, was asked to actually pay for the funding to get the three practices to the Niche Q, and to be perfectly honest, that mounts up to a fair amount of money.

You’re looking at about 40 to 50 thousand dollars to attend all the different collaboratives. Well, from our state, we would not have been able to fund that, and thankfully because of the collaboration from Utah State University, but also from Inner Mountain Healthcare, we were able to--they actually funded one of the three to go to those Niche Q collaborative meetings, and we were able to apply for that grant, and move forward. So, there are ways that we really need to look at to collaborate, and also to be true partners with not only managed-care organizations in business, but other non-traditional partners.

This is just a slide of where the UCEs are in your different states. And I’ll go on from there. At this point, though, I think Bonnie--I’m going to turn the time back over to Bonnie, and I’m so pleased to have one of the people that I love the most in our program, from our business school. And Bonnie will actually introduce Terry, but I will just say, before I sit down, how much I have learned from Terry. Honestly, it has been an eye-opener for me to sit in meetings and have Terry and the business perspective there, not only for children with special healthcare needs, but in all aspects of what we’re trying to do collaboratively in the state.