ABC for Health
Unidentified Speaker: And our next set of (inaudible) from the great state of Wisconsin. Bobby, want to introduce yourself and your team please?
Bobby: I’m Bobby Peterson. I’m with ABC for Health. I’m an attorney there and I’ll let them introduce themselves.
Barbara: I’m Barbara Katz. I’m the parent consultant to the ABC. I have three boys each of whom have their own issues, but my middle son is 11 and he’s developmentally disabled.
Sarah: My name is Sarah Dahl and I’m the family’s MAP Coordinator at ABC for Health.
Bobby: Okay, we’ll start out by talking about what is a managed advocacy program because a lot of people are still struggling with that concept. As I mentioned, I’m an attorney and ABC for Health is a public interest law firm so that in this line of work is both a blessing and a curse. I think it’s a blessing because it gives us a lot of extra leverage and muscle, but it also scares people unnecessarily sometimes because they think that it’s a license just to only litigate not to be strategists, problem solvers working on how we can form collaborative relationships and solve problems without going to court although it’s nice to have in our back pockets sometimes. A managed advocacy program is a partnership between parents, advocates, community based organizations, schools, government entities, all the people that are involved in the care and assistance for children with special health care needs. It was contemplated and put together at a time when managed care was rapidly escalating across the state of Wisconsin. There was great concern that as the advocacy community was being fragmented, the health community was integrating more and becoming better coordinated in some respects and we were kind of flatfooted. And that in response to that we needed to develop a system of advocacy an approach that was a little bit more coordinated and we coined the term managed advocacy to help bring the major stakeholders together to be strategists, problem solvers, identify issues, and look both at the solutions at the individual level, but also at a public policy level as well. We know that a lot of the dominance of managed care is in health care delivery. In fact, one of the things that we came to recognize early on in our project is that almost all care is managed care at some level so that the distinctions are blurring. You may have a fee for service plan, but it has adopted many of the features of managed care. So we, you know, began to think about who we were working with and not just HMOs or a traditional managed care type plan, but we need to be thinking about some of the other plans as well, fee for service plans, because the barriers and obstacles that families were facing were equally as problematic there as well. Some of the things that we’ve heard here today also health care providers don’t have the resources oftentimes to help families caught in the maze of health care financing, links to accurate and timely information, the proactive involvement with families being a part of the process. Recognize the conflict between capitation rates and the requirements and the health requirements of children with special health care needs. Incorporating supportive community services and health care delivery and lack of benefits management for families. I asked a question earlier of both benefits management and it’s something that we’re really exploring a lot more. Not to add another term and another layer, but it seems to us that one of the key elements that’s missing sometimes is not just the benefits manager at the insurance company, but a benefits manager that understands a lot of the systems and the interrelationship of the system. Not the coordination of the care necessarily, but how do these benefits work for the family and how can you be an advocate with the family to make sure that they are getting those benefits, because that’s a source great confusion and frustration for families. And it’s something that we’ve done a lot of work on in models of developing health benefits councils, health benefits counselors, and parent consultations to be advocate that gets the training, but also works to resolve a lot of the disputes that develop. So our mission was to develop a model advocacy program that will enable families to feel secure in placing their children with special health care needs in a managed care setting. That would include advocacy, training, educational materials, and supportive services. And we didn’t recognize at the very beginning what a tall order that was, but we found out shortly thereafter as we started putting the pieces together. We started working with some partners and we have a pilot project in Milwaukee; a pilot in Chippewa Falls, which is a rural area in the northwestern part of the state; and a pilot in Dane County. And each of the pilots developed in a slightly different way, which was good. We were able to look at what the issues that were of major concern within those local pilots and developing some strategies to address those issues locally. Every group *and every pilot had developed a Health Watch committee, which is the committee of the local community stakeholders. (Inaudible) representatives of the schools, representatives of the managed care plans, representatives of the local economic support department which was a real critical piece to add to it because talk about, you know, the old mentally of like peering out at each from your bunker. I mean there was bad blood between a lot of the advocates and county workers who were processing eligibility for Medicaid or for Katie Beckett or for some of the other programs that kids with special needs might be eligible for. Getting them at the table to be part of a problem solving team really did change that relationship and helped us to develop some real positive strategies in working both with the county, working with the schools, working with managed care plans as well. Part of our evaluation was making sure that at each of these meetings we had minutes of all the meetings, agendas, the training programs that they developed, data, detailed encounter information from all the client contacts. So not only did we develop local community coalitions to help identify local issues, but we integrated a client services component because we wanted a learning laboratory of the stakeholders, but we also wanted to learn what was happening to individuals that were having problems in the system, so that a family that needed assistance could call one of the local pilots, talk to the parent consultant, talk to an advocate, get assistance with a denial, question about what services were available. And we’ll go into some detail in some of the key areas that we did work on and identify a lot of the problems. But the client services component really allowed us to really tap into, at the street level, what the issues were. The community stakeholders also helped expand on it and we developed training programs, newsletter articles, and other things in response to a lot of those things we’d learned through the process.
Barbara: The gray brochure that went around was one of our attempts to market this program to families and--yes, and I think these are--yeah, these are my boys, in case anyone is interested, but that was about five or six years ago they’re a lot bigger now.
Lynda: You get to put your children in there.
Barbara: That’s right. Absolutely. Absolutely. But it doesn’t age with them, but, you know, at least it’s a glimpse in time. Anyway with this project we developed four goals. The first goal was to foster the interchange of ideas and improving managed care for children with special health care needs among key stakeholders. And then the key stakeholders were pretty much defined in that first green bullet which says "Established and Staff: A Children with Special Health Care Needs Subcommittee of the Health Watch Coalition of Both Rural and Urban Locations." So that *were close to the three pilots that Bobby just mentioned, to include representatives of managed care organizations, community advocates, and the simple majority of parents. From the very beginning of this project because this is a project designed to give parents the tools to strengthen their advocacy efforts, they had to be included in the beginning of the project. Okay, which way? Down?
Bobby: Down.
Barbara: Okay, I’m not technologically savvy. To expand on the notion of Health Watch so that you get a better feel of this, these Health Watch groups get together monthly and they talk about local policy, issues of concern that affect policy or day-to-day operations. So for example, at Dayton County in Madison we might have a community advocate who works directly with the county in providing services, talk with our Medicaid processors EDS about coding issues. And there’s just this ease in communication across the table whereby the people that are sort of serving the same population, but don’t have a chance to get together and talk have this opportunity monthly that they can pretty much count on to be able to air concerns, air problems, air day-to-day operational issues, as well as talking about larger policy issues. So the Health Watch committee is very valuable. And Health Watches talk about all kinds of issues affecting managed health care not just children with special health care needs, which is why it’s critical for us to have a children with special health care needs subcommittee to ensure that those particular issues are then brought to the table and included the whole sort of panorama of the issues that are laid out. So that’s talking about establishing a value in current barriers. Establishing medical homes for children in managed care settings, medical home was also a concept that we put into our thinking in this project from the beginning, although have just recently started to operationalize that. We wanted to make sure the systemic problems affecting children with special health care needs are documented and addressed in partnership with policy makers and managed care organizations. Again, that whole partnership issue is critical to advancing managed advocacy. And then increasing the coordination and integration of services among managed health care plans and other providers of services. We’ll find this coming through a lot time and time again with prior authorizations and funding stream coordination. This talks about--now the evaluation component. So what did we actually do? Well, we did develop these diverse Health Watch committees both in Madison and in the two other pilot areas. And they were pretty well represented by these constituents. What’s not as well represented is our representatives from the school district, even though--and that’s a piece that’s sort of out there that sort of, you know, going by or aside, but we haven’t gotten them to the table yet. So that’s something that we’re exploring. This is something we’re really excited about that’s upcoming. We’ll be doing a medical home training, but not the prescriptive AAP Medical Home Training, sort of a variation on that in September. In September--September 24 and 25, if any of you would like to come to Madison; it’s a beautiful time to visit our state--we’ll be hosting a statewide conference, which will sort of showcase the results of this managed advocacy project. It will unveil a monograph, which we’re in the final stages of writing. And it will talk about some of the next steps that we need to do in our State to accomplish managed advocacy. On day two of that conference we’re going to be hosting this borrowed sort of medical home training. Borrowed in the sense that we’re not be going to go through all pieces of a medical home training because that’s being done by other people. But what we’re looking at is connecting with other initiatives that are occurring in the State. The Healthy Ready To Work, we’re one of the four sites in the country that has a Healthy Ready Work Grant and we’re very excited about that. As well, our Maternal and Child Health Advisory Committee is looking at a statewide effort of providing--a statewide goal rather of providing a medical and dental home to all children and families in Wisconsin. We’re inviting these two initiatives to give some presentations at the second day of our conference as well as talking about the notion of a medical home and inviting some parent provider teams to talk about their experiences. One thing that we are going to be focusing on in the afternoon of the second day when we’re talking about medical homes is the whole notion of reimbursement because as we talk with physicians and other providers in our state they keep saying more and more that that’s really the big stumbling block. That funding piece is a big stumbling block. And, you know, the medical home concept is great, but the reimbursement is certainly not adequate and how are we going to pay for our Care Coordinators and our Case Managers. And I know I’m probably using the terms incorrectly so *excuse *me as they were used earlier. I talked a little bit about funding stream coordination. We’ve been informed quite a bit through this managed advocacy program by the parents that have come to our trainings, by our clients, by people that call into ABC and ask for information, by people that are referred to us by our regional centers. Wisconsin has a very interesting way of organizing its Title V Program. It’s broken down into five regional centers of supportive services, basically information or referral to children with special health care needs to their families. And so we get a lot of referrals from these five regional centers. And we’re also working very closely with their INR people. But one of the things that come to us time and time again is the whole notion of therapies that are provided in the community and therapies that are provided in the school. And who pays for what? And how do you determine what’s medically necessary? And how do you determine what’s educationally necessary? And how do you make that distinction especially when they mesh together and there are overlaps? And private insurance is not paying. And now Medicaid is saying, "Well, you know, you can’t define the medical necessity." So it’s something that’s really coming to us from all angles. And in fact, we’re exploring a pilot project with the Madison Metropolitan School District to look at this whole funding stream coordination issue. There’s also State Legislator, Mark Miller, who’s very interested in this notion and the notion of bringing together representatives from our Office of the Commissioner of Insurance, the Department of Healthcare Financing, which oversees Medicaid, and the Department of Public Instruction to bring a representatives from those three statewide agencies together and look at this issue as well. The prior authorization process is tricky. You know, it’s funny. I started at ABC probably about year and a half ago. And came to the agency just basically because of my experience as a parent. My training is in Arts Management, which is an unrelated field. But a couple of months into being on the staff, our family presented ABC with a rather challenging problem and became a client. And what happened was that my son Ben, who is 11, was born with a benign brain tumor, had some seizure disorders, and had a hemispherectomy, and basically is hemiplegic, although he is walking now. He started walking when he was five and a half. But because of his hemiplegia his gait is rather unsteady and when he falls he has no protective mechanism. So he can really injure himself. At school the school district had a grant to try this piece of equipment which worked wonderfully on improving his gait and his stability, but he out grew that after a year’s use and needed to purchase his own. So we put in a prior authorization and both our private insurance and his Katie Beckett Medicaid turned it down saying that there was a less expensive piece of equipment, but that was never defined. And our physical therapist kept saying time and time again there is no comparable piece of equipment. And so we actually took this to hearing and appealed both on the basis of that it was medically necessary and the fact that there was no other piece of equipment even though Medicaid stated that there was. They were never specific. They just sort of gave it as a blanket denial. And we persevered and we won. And so now Ben has this great new *walkable and that helps with his gait. And he’s falling a lot less. But it’s just one example of how, you know, prior authorizations can be so arbitrary sometimes, you know? And that managed advocacy and having informed families is a really effective way of dealing with effective prior authorizations from the initial point so that it doesn’t have to get to hearing or to appeals processes. Other just to very quickly--other issues that we came across again being informed by our constituents were was mental health access in the rural pilot in Chippewa Falls. That became an issue where they did a lot of training and education of families on access and just basic dissemination of information about providers which families had hard time getting. Turf issues in the urban pilot in Milwaukee were pretty interesting. Children’s Hospital which is sort of the big children’s center in Milwaukee that part of southeastern Wisconsin were not referring clients to Community Advocates, our base, our pilot there, because they were just they wanted to keep their clients separate. And so what happened was that families did not get the advocacy services they needed. And so the parent consultant now at Community Advocates is trying to continue to establish a partnership, but there is definitely that issue of turf.
Bobby: I just wanted to comment on the funding stream coordination issue because I know it’s something that affects a lot of you where families are struggling between the services in the school, the services between the private health insurance, and services that might be available through Medicaid. I think it really has--there’s a lot of promise in this pilot that we’re developing because--and some of the things that have been said here, but developing a proactive approach with the stakeholders early on in the process to identify and getting people to identify at the tables what services are going to be paid for upfront because as, you know, as you go down the process, school lets out, services may not be available over the summer, children don’t get the therapy services that they need, and then they fall back, and the therapist starts back over again in the fall. I think that, you know, it’s an opportunity to pull some folks together on a pilot basis. We’re lucky because we have a state legislator who’s real interested in this and real interested in promoting this on a statewide level. But we’re going to have a learning lab opportunity to show how this might work with those key folks there and see--you know, the big question mark is going to be the private health insurance companies because, you know, we’re not going to be able to regulate them into doing it upfront. They’re going to have to voluntarily participate. So we’ll have to use a little persuasion to get them there and involved in the process, and identifying those services they’re going to pay for. Because I don’t know how the experience is with all of you, but it seems as though it’s becoming more and more, more of a carte blanche. Schools should pay for this. We shouldn’t have to pay for any of it. Even if you characterize it as medically related and medical need, it still seems to fall to the schools. So we recognize it’s going to be a pretty big challenge. As I mentioned, you know, part of what we were involved with is advocating directly with clients and we had a goal of serving 500 families a year to assist them in obtaining coverage. We did a comprehensive list of available advocacy resources. We developed a web site that included information. We sent out weekly email updates to families that participated in an update service that we had. Our newsletters included a lot of information, but our goal was to try and maximize insurance coverage for children with special health care needs and promote linkage to primary and specialty care, and ultimately hope to improve family satisfaction in managed care services. I think that one of the things that we identified is that if families had someone there with them giving them the tools, giving them the information, providing some backup and support, managed care wasn’t as big of an obstacle as they felt it was originally, but that with some assistance and some understanding it worked a lot better, and particularly when we had the involvement of managed care organizations and families at the table together. And that wasn’t always easy, especially at the very beginning. There was a couple of points when you thought the whole thing was going to collapse because there was some very hostile reactions. Some parents had some bad experiences. And there were some managed care organizations that reacted a little defensively. But it’s one of those growing pains. And we were able to work through it, barely. We had a managed care plan that withdrew at one point they said, "We’re just coming in here and getting beat up" and I was trying to explain, "You know, this is really something that--you know, understand that there’s a lot of emotion here. These are parents that care deeply about their children. They may have had a bad experience. These are your customers. And, you know, it’s going to be important that we figure out ways how to work together." And when that didn’t work, I reminded them that part of their Medicaid Managed Care Contract required them to be involved in local community coalitions so, you know, they came back. And actually after they got involved a little more they’ve been fairly happy about their involvement, although it still sometimes gets rough. But that’s a thing too is to, you know, the Medicaid Managed Care Contract sometimes requires them to be involved in local community coalitions or organizations. And ours did and something we had advocated for in the past. And it ended up being a good thing for us to point out because it was a requirement of their contract. It’s another thing that we did as a part of our health logic coalition, each of the pilots when the managed care contracts come up for renewal, we get a copy of the old contract and we go through it and we list all the recommendations of how it could be improved, and so part of this whole concept is developing these Health Watch groups. If we can see this idea and develop more of these around the state--and we’ve got three; we’ve got two that are starting to develop within the other regional centers, gives us a lot more leverage. If it’s just one Health Watch group saying, "We want these changes in the contract," you know, yeah, forget about it. Two: they look more closely. Three: but as we get more people involved it gives us a lot more public policy leverage. And we’ve had some successes in getting changes in the contract. Other things are still on the to do list. But we’re gaining strength I believe.
Audience Member: (Inaudible).
Bobby: The contract review is the public side, yeah. But there has also been a lot of interest in the Dane County pilot because it’s a major state employer and the state employee contract has a lot of provisions. And we’ve advocated on that one as well, but a lot of the other individual plans, only on a case-by-case basis when we’ve represented a client. There are so many different contracts. Dean Health Plan has, I think, 150 different contracts that they administer. Okay, so we provided counseling up till this point to over 2,330 families in our pilot communities and some calls from outside our pilot community. This is data that hasn’t been fully mined yet, but we do a comprehensive intake interview with the family that usually takes about 25 to 30 minute to do an intake interview to identify the issues, family size, family income, what the access problem might be. We identify what the issues are. Is it public insurance, private insurance? and our advocacy resources then are used to help them to identify an outcome. It might be that we have to file a hearing. It may be that we make a three-way phone call, which has been very successful in our advocacy efforts. A lot times it’ll be a situation where it’s he said, she said and you’re like, "Okay. We’re going to get everybody on the phone. We’re going to get the person from the insurance company. We’re going to get you on the phone and me on the phone. We’re going to talk this through really understand what’s going on." and you really do cut through a lot of red tape that way. We found it to be very effective in resolving issues quickly. Not all of them obviously, but it’s a good tool. Our casework then informs what our training needs are. We’ve done a lot of training in the prior authorization issue. We’ve done a lot of training on the funding stream coordination issue. And we’ve helped families understand how to work with their therapists to write better prior authorizations for services, not to simply duplicate what’s in the IEP to the State Medicaid Program because that’s going to get denied, to be careful how you characterize things to your insurance company--a lot of tips and tools. We were also helpful in getting a statewide audit of the prior authorization process conducted. That audit found that over 50 percent of the families that challenge a denial of a prior authorization through the hearing process get it overturned. So it certainly is important that families are aware of their opportunity to speak up and file an appeal because it does result in some positive outcomes. Getting correct benefits and services information people are in the best position to impart a challenge. There are also some issues that came up where parents believing that if they advocate for increased services it might cause a backlash with providers. A lot of times we would be involved with situations with clients where, you know, they didn’t want to rock the boat. They were in a situation where they were concerned that this was going to have a negative consequence for other benefits that their family was seeking. And so we needed to do a lot of work to help either them understand that we’ll be there with them to help them through the process, but in certain situations it was their call. This happens a lot in situations where there may be a managed care plan or actually in a situation where there’s health plan that’s self-funded and it’s through the employer. And so there’s really concern about the job and advocating against the employer because it’s a self-funded plan. And those are the toughest ones because, you know, I’m not going to push that issue to far with the family because it’s pretty clear, you know, we’re going to pay this out of pocket because we’re not going to jeopardize the job.
Barbara: Okay, so how did we directly address the need for managed advocacy? Goal three says that we were to organize parents of children with special health care needs to become active and involve participants with managed care on the policy level. Objectives are that families fully understand their rights and options and can effectively advocate on behalf of their children. We hope to expand family participation in managed care policy development, and again, to ensure that parents are fully involved and confident in making decisions to place the care of children in the hands of managed care organizations. Some of the activities that we’ve done to carry out those objectives is one of the--actually one of the more exciting ones, I think, is involvement with a statewide Survival Coalition. Wisconsin is in the process of really developing a very strong parent advocacy movement. And the Survival Coalition is a group of consumer advocates, self advocates and family advocates and caregiver advocates that is an outgrowth of the Wisconsin Council on Developmental Disabilities. The Survival Coalition has put together a variety of issue papers that address certain issues, has been very active in legislative lobbying, and has been very active in improving the lives of people with disabilities in our state. ABC and the *Family’s MAP project has been involved the Survival Coalition and has also been involved with particular aspects of that, such as children’s long-term care redesign. We are actually in the process of writing a waiver now to put all of the supports, all of the community supports, for children into one package, into a long-term care package. And that has been approved on the theoretical level by our legislature, but of course there’s been no money attached to go forward with that. But we are in the process of submitting the waiver to CMS this summer. So I think that coupled with this sort of percolating and snowballing advocacy efforts among consumers in Wisconsin is really quite exciting. A big a challenge and perhaps the biggest challenge we’ve had in the *Family’s MAP program is the full involvement, sort of the active involvement, of management of managed care organizations in the Health Watch Coalition. We’ve been very successful in getting health benefits advocates to attend and to participate. But getting higher up executives has been a real challenge for us. And it’s something we still ponder and we consider ways in which we can enrich that relationship. In goal four, which Bobby’s going to talk about in a minute, the other thing that really supported the objectives in this goal were was a whole host of training and informational pieces that we got to families. Our trainings perhaps had the most direct impact on families they grew out of families needs for information on particular subjects as did the newsletter topics. Sarah’s talking about that. Sorry, Sarah.
Sarah: I’m going to talk a little bit about our final goal and the state of goal is to develop an information and advocacy infrastructure to promote system responsiveness in managed care organizations and this is most closely related to organizing services in ways that families can easily use in managed care. This is more specifically the objective of our final goal and it’s really related to the education and training of both parents, providers, and advocates. And not only just to make them better advocates for their families or for other families that they might be helping, but also to actually promote positive policies in practices in system changes. Like Bobby mentioned with the funding stream coordination, we did have a training on the problems with prior authorizations and coordinating those funding streams and that did end up in some interest by a legislator to try and move forward with those issues as well as the managed care, Medicaid managed care contract and things like that which I’ll go over. Now some of the trainings that we provided over the course of this project in the pilot site and in Dane County are listed here. And as Barbara and Bobby both mentioned these did come from client work that we did and just things that we were hearing at meetings that were problems or concerns for families and providers. These are some of the other trainings that we also presented on and a lot of these were mentioned and some of these are the ones that did result in some other systemic policy change that we were working for.
Lynda: (Inaudible) training that could be used in other states.
Sarah: I think a lot of them could be used I other states, some of them like advocating with their provider and things like that. The things that aren’t specifically above the laws and rules in Wisconsin I think could be used anywhere.
Barbara: The Alternative therapies and cultural competencies, some of those that are more general issues.
Lynda: The ones that they have laws you can kind of just say you say you need to throw in laws understood.
Bobby: Process of reviewing your state Medicaid contract would be something that, you know, how you go through that? What are the issues you need to look for? What are the people that you need to bring in? Who’s going to be looking at different sections? How you pull together? How you collectivize your voice to the state contracting agency to say, you know, "Here’s the changes we want." So there process elements in a lot of these too that will be helpful I think.
Sarah: Right. And some of those process elements are going to be outlined in our monograph at our final event also such as how to set up Health Watch or how to review the Medicaid contract and make recommendations. Also elect the HMO panel on grievance procedures and services. That was a tricky one to pull together. We tried to get representatives from all the different managed care organizations in our county to come together and present as a panel what their grievance procedures are that you can go through, and what other services they provide for children with special care health needs. That was little tough, but that could probably be done elsewhere also.
Bobby: We thought it was going to be really challenging. It took a little bit of, you know, persuasion, but finally they all stepped forward. And what we did the thing I think was important is because I had told you the little spats earlier on. We said, "We’re going to set it up in the way that I’d be the moderator, and we’ll get written questions." So the questions came in and if there were any torpedoes being fired I could say, "We’re not going to get to that one." But I was able to under of keep it under control, and afterwards they were real happy. It wasn’t just a commercial for them. They had to answer some tough questions. But there wasn’t blood on the floor, you know? So it was a success.
Lynda: I had similar experiences in my (inaudible) where the plans would come, but only if they had the questions ahead of time, and people weren’t allowed to storm the stage (inaudible).
Sarah: Another key element to out training and education was our linking to the five regional centers, which both Bobby and Barbara had mentioned also. We have pulled in representatives from the two regional centers that aren’t in our pilot areas, so they are now a part of our project that participate on our monthly calls. And we’re linked to them also that when our newsletters out and we have a brochure or any other kind of training or informational resource, we send stocks to them and then they can a disseminate the further families that we don’t have on our mailing list. That’s been as key element. The parent brochure was passed around, the green brochure with Barbara’s kids on there, that was a product that was created just to let people know about the Family’s MAP project and the advocacy services that we could provide for them. In addition, we also have a quarterly newsletter. And we do have a bunch of copies that we’ll probably just put on the back table if anyone’s interested. Those are some of the things that we’ve addressed in the newsletter. And once again, those are informed *IDA issues that we’re hearing from families and other advocates. It started out a little bit more with the last two bullet points down there with more of the legal budget issues and things like that, but I think we made a switch pretty early on to try and make it more family friendly, and hands-on information that people could use, advocacy tips. We’ve gotten a lot of really good feed back from that. People have been ordering quantities of 500 at per providers’ office to give out to families so I think we had some good success with that. Okay, we also have a Family’s MAP section of the ABC for health web site which has links to both the pilot sites where we post all the meeting minutes from our trainings and just general meetings, other notices for events that are coming up. I mean we also have PDS and HTML versions of our newsletters on our web site as well. In addition, we are creating a PDS version of the health insurances guidebook. It’s not completely at the elementary level, but it’s little step ahead of that. We do go into some of the state and federal laws in a considerable--well, a fair amount of details like COBRA, ERISA, and HIPAA, and things like that. But it’s also created with families in mine, and so it goes over choosing a health plan, different types of managed care organizations, how to prevent problems from happening, what to do if you have a problem and you need to go through a grievance, special factors for children, special health care needs, like coordinating care, and payment, and then other resources. It is Wisconsin specific, but could be useful to other people in other states. But that should be on line fairly soon. We’re getting really close to having that done.
Bobby: We thought we have it here, but I looked at the last revision we had to make a little too many--I guess it’s the lawyer in me, maybe. I should just let it go, but I want it to be accurate.
Audience Member: I want to know if you have lawyer jokes (inaudible).
Bobby: Those float in once in awhile.
Sarah: Another product that you’ve heard mentioned once already is the monograph, and that’s going to be our replication manual essentially about the managed advocacy program that we created in Wisconsin. However, other people can replicate that. And even if they can only do little parts, we want to make it as user friendly as possible so that if it seems to overwhelming to do an entire managed advocacy program, maybe they can replicate cultural competency in their practice or some other aspect. That will be showcased at our final event this September. Bobby mentioned the weekly update. That is mainly the legislative sort of news brief update that goes out to a wider audience than just children with special health care needs.
Bobby: Did we lose that slide? Or is it (inaudible).
Sarah: No. It is there. Hit it again.
Bobby: Some of lessons learned. We can trim then premise that managed advocacy including a connection to legal services needed in Wisconsin. Again, as I introduce this concept, I think being a public interest law firm is a blessing and a curse at times. I think it’s more of a blessing because all the programs that we work with are guided by federal laws, state laws, regulations, and having a thorough understanding of how those laws work can help you advocate to make sure that families are getting what they need and deserve for their children with special health care needs. We can share the tools in a noncomplex way and a non-legal way many times to help families work through many of the barriers. We can help people understand that this is the law and this needs to be followed in a certain way. That’s been a helpful avenue for us. Of course it does--you know, as I said, some people react, "Oh, it’s a law firm." We try to really dispel the myth that we’re only about filing lawsuits. The usefulness of developing local policy coalitions, I can’t say enough about how important that has been to our process, but getting the key folks there at the table at a local level. I think we can start at maybe a regional level to help organize some local activities, but having those local folks there at the table. You need to think about some practical things. How are you going to get them there? Well, sometimes we’ll do a training that’ll help draw people in to attend. Bring food. Bring food, coffee, things like that--the basics. But it’s important. Organizations that we had were of an antagonistic relation. We get together at the Health Watch meeting now. We’re all pals, you know? I mean even though we have disagreements, we operate in an environment of mutual respect. And we understand what their job is and they understand what our job is. Yeah, we disagree from time to time, but we really have something similar in mind. That’s usually trying to provide the best services that are available. We just have different vision about how we may to get there. But because we’re at the table, more often than not, we learn how pull our visions together in a way that’s going to work. Involvement with statewide children with special health needs efforts is very important. Our links to the Title V program in the regional centers has been very powerful and has helped us immensely in our efforts. Certain points, you know, it’s challenging, I think, at times when we’re providing services in pilot communities and the other regional centers are saying "We have cases and we have people that need some help." We’ve been fortunate enough to have some other funding to provide some assistance for those families that needed assistance as well. But we are really strongly working to promote this concept of developing Health Watch coalitions in the other regions as well. Electronic and hard copy dissemination of information is essential for families. Not everybody has access to the Internet. So we have it available on our web site. We mail out--I don’t know what our total--what’s our newsletter dissemination now.
Sarah: I don’t know.
Bobby: But there’s a lot that go out. And Sarah said we had a call from a physical therapist in New Berlin who was just raving about the newsletter because it really outlined the prior authorization process, and she wanted it for the families and for the therapists that she worked with, and she ordered 500 and paid for them as well. It was a nice affirmation of what we had pulled together, but it’s going to also have a nice effect on then families that she’s working with and the other therapists as well. Managed advocacy must be linked to concrete practical information for it to be relevant to families. You know, our link to the casework, our listening to families, our working in partnership on our committees, our staff really keeps us grounded in what is really going on out there and what we need to do, and what are the strategies we need to help. So we’re often pulled. We have a good link to the real world of issues and advocacy struggles that are being faced out there. Key relationships with partners fostered. It’s not easy developing these Health Watch coalitions. And I’ve kind of gone over that. But we did make some major steps along the way to building better, stronger relationships, and get rid of the silo mentality, everybody at the table. Services are more coordinated now in our pilot communities. With people at the table, we get things resolved and we get results at meetings or a couple of quick phone calls. Not always, but much more often than we used to. Knowledge basis increased among providers, parents, and advocates. The sharing of information really results in the understanding of what the issues are being increased greatly out there, and ultimately, more families access financing for services. That’s our *contact information, you can learn about some of the information that is on our web site or to get a hold of us if you further questions. But we’ll answer any questions you have now. Yeah?
Audience Member: (Inaudible) between Health Watch coalitions and survival coalitions.
*Sarah: The Health Watch coalitions are coalitions that are directly part of our program, okay? The survival coalition is an effort stemming from the--
Bobby: DD Council.
*Sarah: --thank you--Wisconsin Council of Developmental Disabilities. And that is purely advocates and advocacy movement for consumers, and Developmental Disabilities, for self-advocates, for families, for caregivers, et cetera.
Audience Member: How often does your Health Watch coalition meet? I didn’t have a sense of how often do you meet.
Sarah: The Health Watch group meets monthly.
Audience Member: And how big a group is (inaudible)?
Sarah: The Health Watch groups meet monthly in Dane County. In Madison, our Children with Special Health Care Needs Subcommittee meets quarterly.
Audience Member: Quarterly. And how big a group does that consist of?
Sarah: Which group?
Audience Member: The subcommittee quarterly.
Sarah: The subcommittee group is upwards to about 40 people typically. It can be a big group. Again, it’s the pertinence of the topic that attracts the number of people.
Audience Member: So it’s an open membership?
Sarah: Yes. For the Health Watch meeting, which is pretty much a standing group of people which meets monthly, I’d say 20 to 25 participants.
Bobby: Yeah.
Audience Member: And so some of the subcommittee members of special health care needs are on the Health Watch?
Sarah: Yes.
Bobby: Yes. Lynda?
Lynda: What’s the role of Family Voices? Because I think some of what you’ve talked about, some people might perceive that it could be a role of Family Voices State Chapter.
Sarah: I missed the first part of what you said.
Linda: What the role of Family Voices is in your project?
Sarah: In Wisconsin what Family Voices is doing is mostly policy development. Our two coordinators: Liz Hecht and Linda Rowley. Linda Rowley is the woman who’s put together the Family Village web site. If any of you have ever accessed that, she created that. Liz Hecht is the other coordinator. She also works at the Waisman Center, but the purpose is pretty much policy development. They are very involved with the Survival Coalition. They were the drivers. Family Voices were the drivers of the Kids Long-Term Care Redesign Program. They’re sort of monitors of constantly keeping kids issues at the forefront of the legislature. So at this point it’s pretty much policy. There have been beginning conversations amongst the two coordinators and other Family Voices members in Wisconsin about creating more of a sort of hands-on parent organization, but at this point its just pretty much at the policy level.
Bobby: But Liz has participated in our Health Watch Coalition in Dane County and helped us put together some of the meetings and facilitated some of our events.
Audience Member: Are you going to--this is terrific, what you’ve done. It’s really comprehensive. Are you going to be able to contain this after the grant or continue this or how are you going to do it?
Bobby: Well, I think that, you know, we have an idea for an overarching organization called Health Watch Wisconsin, and so this is part of our plan. We’re working with some of our other funding Covering Kids. We’re a grantee for Covering Kids and we’re trying to integrate and build upon the capacity across State because there’s some parallels there. And you were mentioning it in the earlier about getting these folks together from the Mental Health Organizations, from the DD community, the Children with Special Health Care Needs. Building these, breaking down some of the barriers, finding the common ground and moving the policies forward. I’m hopeful. I’m always optimistic. But we think that we’re onto something that people in Wisconsin are buying into and we’re going to keep pushing it. It just depends on how fast we can push it. You know, we tried something like this. We worked with a group from the American Public Health Association and Quinten Young had this idea for creating a Public Health Advocate and it was going to be housed within the APHA, a separate organization. And they were talking about this and we had the folks from SAMHSA there. We had the folks from Children with Special Health Care Needs and APHA. And we were putting the pieces together, but we ran into a lot of opposition, partly because of turf, partly because we’re starting at the top instead of in communities at the bottom. I think we figured it out that it’s better if we try and do it. And Iowa has a Public Health Advocate that’s developing. Illinois has a Public Health Advocate. We call it Health Watch, but it’s pulling these major stakeholders together to give us more muscle on some of these policy issues.
Audience Member: That’s terrific.
Audience Member: So the Health Watch effort really has a Medicaid managed care focus, is that correct? Or would you say that it’s a bigger agenda in terms of health care for all of us?
Bobby: It’s a bigger agenda, sure.
Audience Member: And the funding for all of that has come through ABC?
Bobby: The primary funding for the children with special health care needs activity has come through ABC.
Audience Member: So my question’s really on the larger structure. How is the larger structure supported and are there other subcommittees that are as well developed and sort of focused as your children with special health care needs activity?
Bobby: Well, it’s interesting. Yeah, it’s interesting. There are a number of spin-off groups that have started. Some of them are funded by, you know--like the County Health Department has a Health Outreach Coalition that they developed. I don’t know where their funding--people come to the meeting. They facilitate the meeting. They talk about outreach efforts within the county. And people participate. In Milwaukee there are a number of different groups that formed outside of the Health Watch Group, Badger Care Coordinating Committee developed. An enrollment process improvement developed. That was funded through Covering Kids, but there are these other subcommittees that developed.
Audience Member: And they’re under the umbrella of the Health Watch?
Bobby: Right, so those people report back to the full Health Watch Group and so that’s where we have the cross fertilization of the interest groups. I mean our Children with Special Health Care Needs Group has its specific issues and agenda, but then it can present back to the full Health Watch Group.
Lynda: Any more questions? Thank you. Were going to turn the meeting over to Susan *Flickenger. I started out the meeting by saying this is kind of bittersweet because--
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