Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
DEBORAH KLEIN-WALKER: Okay, thank you. Humbly, I come up here for a second time today to speak to you all, and it’s like being called into the commissioner’s office. I will do it in a shorter amount of time, but I have some very specific recommendations to take back home for public health data people. We are fortunate in Massachusetts to have actually been funded by CDC for as long as they funded offices of disability and health for adults. We were one of five programs that’s been funded for over a decade. So we’ve had a lot of experience, actually, on the adult side as well as the kids’ side. And I’d like to say that Nancy Wilbur is here today, who is one of the colleagues who’s done this with me, with Debbie Allen and Monica Mitra. And it’s interesting in trying to bring the two worlds together. My first slides, actually, really talked a lot about what John and Nora have already spoken about, the major areas of transition and the kinds of outcomes we have to think about.
And I think the slides really talk about the importance of including the kids and the families in defining those issues. We’ve also came to recognize that, like, self-determination itself is a kind of a measure of a process along that development, because many of the outcomes for successful transition are longer-term outcomes as we get there. I want to move on and just say so--just a little bit on the adult focus. As researchers, epidemiologists, whatever we call ourselves, if you’ve only been throughout working in the child area and all of the sudden become exposed to the adult area, it is different, very different, in how people approach it, in the methods they use, their definitions of disability.
So there’s a lot of work to be done here, which I feel folks like us can do, to actually bridge many of these gaps. It’s not happening out there in the research world. The adult world is a lot more segmented into silos than the kids’ word. It’s taken us 20 years to come to a definition to bring all these groups together by diagnosis in chronic disease for kids. The adults haven’t even begun that work. So there’s a lot of challenges here which need a lot of research and data, as well. The other key when you move into the adult world is that secondary prevention is key. We’re talking about basic access to services the rest of us take for granted, mammography, pap smears, you know, going to a recreational place. Those kinds of things need to be documented. And by providing those services as well as many other things in the environment in context, many, many folks with chronic diseases or disabilities can go on to lead healthy, productive lives, working, getting married, and all the kinds of things that Nora talked about.
But that needs to be documented. The focus of the CDC center that Jose heads up on the adult area is exactly that work. What I wanted to share with you is Massachusetts, we have used--just as a little teaser here, I think every state should have a report on disabilities, health outcomes, and health access every year, just like we have a report on annual births. And we’ve begun that process in Massachusetts. First and foremost, you have to have a disability screener in your survey. So we’ve included on in our behavioral risk factor survey, which starts at 18. So people in the child world are going to have to work with the folks in the slates world, and all of these things are going to have to start aligning if we want to do this work. In that time that we’ve had that--I just want to give you a few teasers--we have shown, and this is the sad part, compared to adults without disabilities--and by the way, using a functional definition, we got that there were 19 percent of the population had a disability.
UNIDENTIFIED SPEAKER: We didn’t talk about it.
DEBORAH KLEIN-WALKER: We didn’t talk about this. Fourteen percent had a disability and said they didn’t need help, and five percent said they had a disability and they did need help. So all of these numbers start to come together in a lot of different ways. But these are the things that you start to document. And when you start documenting this and people have it, then people start to act and get irritated. Without this kind of data, no action. We know that from what we do. So compared with adults without disabilities, adults with disabilities were significantly less educated, less likely to be employed, more likely to be unable to work, and have lower average household incomes. But then, we move into the behaviors. Fifteen percent of health outcomes are behaviors, whether or not you see a doctor, etcetera. And what do we find? More likely to smoke. In fact, we had one of the first papers in the literature on disabilities and smoking. Less likely to report physical activity, more likely to be obese, poor quality of life. And here’s the other thing about other disparities: disparities between adults with and without disabilities hold within all the racial and ethnic groups. Nancy has just done some important work on this area. Within adults with disabilities, the Blacks and Hispanics report worse health outcome than those of Whites.
So again, if you’re interested in the health disparity work, which we’ve taken this into, it’s even double and triple jeopardy, as it is with a lot of other health outcomes. We’ve also worked on getting a screener in our youth health survey, which we use in between years with a youth risk behavior survey. We’ve documented the same kinds of things. So the point here is you can start integrating this into population-based surveys and ongoing surveillance, and it can become very powerful for making the case. It doesn’t tell you all the answers, clearly, but it leads you in directions. So my recommendations, fast and furious, on policy and leadership, and they’re going to be in data and surveillance research and services. Okay. Public health agencies need to clarify roles in transition issues. This is a big one, and John referred to it.
It’s clear where you go for kids with special healthcare needs because it’s in Title V. It is totally unclear who has any kind of a lead at all on adults with disabilities. Those of us who have been fortunate to set up offices of health and disability--and ours is with special health needs for kids, so we call that division “Special Health Needs”--we have actually worked with all those agencies, mental retardation, rehab, etcetera so that they feel comfortable now with us taking a lead on the health issues. But it was not clear when that began. And there’s just so much work to be--it’s like a bottomless pit. And I hope since we had MCHB here and we had Peter here yesterday, and we have Jose here together, between them, if they can’t do some leadership work on how we might address this transition from both areas. I would love to see Jose’s center take the lead on some of the health issues, but if that’s going to be what happens, we’re going to need to really work hard to fight to get a lot more resources there for them to be able to do that so that every state could have an office of health and disability for their adult population. But it’s just really clear that this needs to happen. Next, we need to encourage a united consumer movement for young adults.
We all know the impact Family Voices has had, and we’re very proud of that. And I know that they have a group which is for the youth, but most of us haven’t heard about that group as much. It needs to be much more empowered. Plus, the adult with disability world need to come together and really advocate for themselves. We found in our state it is very difficult. They actually are so angry with the medical community that they don’t want to have anything to do with the medical community. So it’s been a process in working with our colleagues who have disabilities in the adult world for them to start to see they can be the leaders of their own destiny. These are the things public health should be doing to advocate for these kinds of services. But I think we need to advocate and support those kind of movements so that that can also help and help get the money, again, that Jose’s going to need to do this in every state because it can be done. I hope a lot of you know that there is a chapter six in disability and secondary conditions with Healthy People 2010. That was a huge victory that the adult world especially felt strongly about, because there is a whole chapter that outlines goals for adults with disabilities. On the data side, good data is needed and you can drive policy with good data. I cannot tell you how much has been received in our state, especially among the adults, parents, etcetera, have this kind of information. And I think we need to work harder.
That’s what we’re about, and I hope in future meetings there can be more workshops on doing this. People can hear about the work on the adult side, because more people know about the work on the child side, and come together. But one thing I really want to say is we need a measure of disability, chronic conditions, functional status--we’ll have to decide which to use, which name--in every health monitoring and surveillance system. This is a demographic variable. Without this variable, you cannot document what’s happening. And that’s the way we approached it in Massachusetts and made a commitment to include it in all of our surveys, and it’s already begun to have a big impact. This is going to be key between HRSA and CDC, again. We have the slates. Thank heavens we have the slates, wonderful, with the screener in it.
Okay. Somebody’s 18 and above. If we have the same screener in the behavioral risk factors survey in every state, you’ve got even more data. Then, if we can get CDC, the Division of Adolescent Health, to put it in the Youth Risk Behavior Survey as a demographic, we’re going to have even more information. Right now, in the Youth Risk Behavior Survey, you have to beg in your state to get it in there, and there about four states that have been experimenting with it. And I can give you those states and the data, and we can share the different definitions. So I think there’s incredibly opportunities that we could do right now. In fact, you can go right home and put it in your own behavioral risk factors survey without having CDC do anything. But if we had this, we would have much more of the documentation on a cross-sectional basis. I think this is doable and doable within the next few years. I’ve been involved with a research group on kids with chronic illnesses for a long time, even before I went to the state health department. And it’s helped a lot to shape measures and things like that.
We need to bring together leading child researchers and practitioners with adult researchers and practitioners and the families and the kids themselves, and decide what are we going to be, you know, can we come to some agreement right now, even though it may not be perfect, of what are the screeners we want to use? Christie Bethel and those folks that are going to present tomorrow, they have actually piloted a similar screener that was in slates with adults. What we’ve been using in the Behavioral Risk Factors Survey is a little different. But, you know, they’re close enough. Let’s just all agree and start using them, at least as a core. That would make a huge difference. Then, we have to agree on terminology. We say “kids with special healthcare needs,” and I’ve been saying, “adults with disabilities,” because that’s kind of how they go. It’s kind of like the discussion on epidemiology, but it does include chronic conditions and all the functional definitions. That needs to be done if we’re going to be able to help with that work. This wouldn’t be that hard to do, and I think it’s the kind of thing, again, the public health service could help us with--move forward.
Then, I just make the point, a couple points, that are probably obvious as you’re sitting out there. We need population-based studies, but we also need longitudinal studies. We need a whole lot more research in this area. And by the way, there isn’t much money to do this research. You can’t get it from NIH. NIDR is one particular angle, and there isn’t enough here. So again, if we could get Julie Gerbingman’s criteria for her public health research to include some of these things, it would be great. We also have problems with how do we bring in adults and kids with cognitive impairments. I mean there’s a lot of folks that are left out even in the work we’re doing, and we’re all aware of that. And I always answer that by saying, “Well, it’s just a conservative estimate, and look what we’re finding.” I’m so glad that Nora included a case on mental health.
We cannot keep separating mental health. I mean if you went to a meeting on mental health, they’d be talking about these similar things. They really are functional and very much go together. And then, we need a lot more work on what works. Another point, just to state again, you do need the youth and the families themselves involved. And my last slide is we’re going to have to advocate for these groups, and the more people are aware of this as a group, the easier it is when your colleagues go to meetings--even if they don’t work on kids with disabilities or adults--to say, “Oh, but we need to include disabilities in this.” We need to make sure we have disabilities when we’re planning the bike paths or whatever it is. We have found in our health department, having this information, a lot more people think about disabilities. We have our mammography program going around and putting in a licensing and doing a check to make sure that every woman who walks into a physician’s office can get a mammography because it will go up to her wheelchair.
That starts to happen when you get this information out, just as an example. So I guess finally, I just want to say I think if we can move in very simple ways to incorporating some of these definitional things and documenting this work, which is really doable, and what we have within our grasp within the states and with our colleagues at CDC and HRSA, we will be able to document and move forward services and financing for this most important group in our populations. And when that happens, I think we’ll start to see a lot more change. Thank you.