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Tennessee Voices for Children

Lynda: Never heard of it!

Connie Nelson: Well, despite all of TennCare’s, I don’t know good rep, bad rep, whatever, it does have a lot of positives about it. And one of the things that has been positive about it is that it probably comes the closest to providing universal health care than any other Medicaid waiver program in the states because it not only includes the Medicaid eligible children and adults. It also includes people who are uninsurable through private insurance and people who are not able to obtain insurance because maybe they don’t qualify at their work et cetera. So, what happens as a result of that is almost one out of every two children who live in the State of Tennessee are in TennCare. So that’s a large number. Now that unfortunately is going to change very soon because we are up for our waiver to be renewed this year and like everybody else, we’re finding that they want to make some major cuts in that.

The purpose of this project was for us to increase access to a full system of family-centered, community-based services to children and youth with severe emotional disturbance. And we use the Federal definition of severe emotional disturbance, not the Department of Education definition.

The Federal definition says that a child has to have a DSM-IV diagnosis, and they have to have functional impairment in at least one of three areas of their life, like at home, school, community. So, that’s the definition that’s used.

How many of you are familiar with system of care principles? Does that ring a bell at all? In mental health, we have had system of care principles for a number of years. They’re very similar to medical home principles, and some of the things that are very important about system of care principles--and I’ll pass this around because this is the only one I have--is that it is very much family needs driven. And as you can see in the little circles we’ve put around here all the different services community, whatever that can impact a child and family. So the family drives the system by determining what their needs are. And we not only include traditional kinds of services like social services, health services, educational services, we also include other services or supports that are available to the family. It might be faith-based. It might be recreational, et cetera. So I’ll pass this around to you if you want to just sort of see what that’s like. So, when we talk about a comprehensive system of care for children these are all the components that we’re looking at.

In our project, our partners were we had a system of care advisory board. Those were the stakeholders and that was composed of representatives from a number of state agencies including Department of Health, and Department of Mental Health and Developmental Disabilities, Managed Care, and the Behavioral Health Organization in our state for TennCare, parents, advocates, and mental health providers. So those were all the people who were partners.

The staff for the project, in addition to a coordinator, we had three full-time positions that were split across six staff so that we were able to cover the whole state of Tennessee at this point.

And our evaluation design was primarily to work on policy through the advisory committee to do surveys every year with state coders, parents, and providers, and to use that information to look at what were the gaps in services? What did we need to do differently?

And then training--one of our primary goals was to provide system of care training to a number of mental health providers in the state, all the managed care providers under the Behavioral Health Organization, as well as a number of health care providers. And in addition to system of care we also did training on EPSDT, well-child, because as many of, you know, for mental health services that’s very underutilized.

Some of the results from our grant kind of happened in an ongoing fashion, in addition to whatever goals that we identified. And I think one of the strengths for us is that we worked very closely with the Behavioral Health Organization (BHO), which is subcontracted through Magellan, if you’re familiar with Magellan. And through that partnership we were able to give feedback, and they have set up a number of programs as a result of some of that feedback. Last year I think we talked to you a little bit about the Plan Respite Program that we were able to get in place and that’s available to anyone who’s on TennCare who has any kind of mental health issues in the family whatsoever. It doesn’t just have to be the child. And the Behavioral Health Organization made a $500 per participant Respite benefit available to family members so that they could use that as for plan Respite not crisis.

The newest thing that the BHO has done is now they are going to do a study of parents who have children who’ve been diagnosed with ADHD and ADD and look at the occurrence of depression in that population because for any of you who have raised an ADHD child--and I have--you know that the stress is very high. And so that the prevalence of those parents getting their own mental health needs met is also an issue that’s being looked at at this point. And they have subcontracted with us to do those surveys.

A couple of the things that we wanted to accomplish is, one, we wanted to increase the identification of children who are severely emotionally disturbed throughout the state, we also wanted to increase the number and participation on the advisory council and I forget who mentioned that and that’s very important. Over the course of this grant we have more than doubled. I think I started out with like five family members. There are now at least 12 family members. So their voices get heard. Of the groups that we surveyed probably the group that came in with the largest number of children identified as SED was the 8 to 12 year old group.

One of the things we did after the first year of this grant was the state took some of the data we had and was able to apply for a grant for children’s community continuing health. Those are what they call the system of care grants. We have one of those in Nashville at this point and it’s targeting the 8 to 12 year old population. So we have put a system of care program in place. We have what’s called family service coordinators. Most of them are parents with children themselves who are severely emotionally disturbed. They work directly with those families to help them access services and coordinate services. So those are just some of the things that have happened as a result of us even having this grant.

One of the things that’s in your handouts is the preliminary report that was done for year three. And I just want to emphasize a couple of things in this report. And most of the findings in this report have been consistent year after year so there’s not like a big difference in what we’re seeing. And it’s the one that looks like this. Preliminary Report. Okay.

In the parent survey--if you go down to the parent survey--we found that most children with SED live with a parent. So they’re in the community, in the home. Most parents are satisfied with the amount of input that they’re able to give and be involved in the planning process for their children’s mental health services. And about half the time they participated on the treatment teams. Most parents reported that they did not feel that their child with SED was receiving enough services, all the services that they need. And what we find and I don’t know if this is true in some of your other states, but mental health system has really been fragmented and almost dismantled. So, a lot of times parents aren’t even aware of all the services that they’re entitled to. If they have a case manager assigned and a physician that’s seeing them like maybe once a month for medications, they’re not aware that they can also be getting counseling for that child or even more intense level of services. So, sometimes this is a little skewed in terms of parents being satisfied, and not knowing everything that’s out there and available to them as well.

Another thing that was a concern was that 48 percent of parents had not been told about how to use the appeals process. So, they weren’t aware of what they could go through in terms of getting services. That’s probably true on the physical side as well. The number of families that contacted support groups rose significantly, especially during this third year. And we also show that 60 percent of children with SED did not receive case management. So there’s a large number of them that are not getting case management services. They may get medication management, but not the other things that they need.

If you turn to page three, under "Conclusions" one of the things that I want to say that was very alarming to us and it’s kind of in the middle of that last paragraph, 68 percent of families are still being counseled to relinquish custody of their children in order to obtain services according to stakeholders. And if you’re not aware of this yet, this is a major, major, major problem nationwide. It isn’t just unique to our state. In Tennessee we’ve had a couple of class action lawsuits on behalf of children in TennCare and so they’re benefiting because of those lawsuits. One was a lawsuit which we call John B. That was on behalf of all children who receive TennCare and are in state custody. They were not getting the level of health and mental health service they needed. So now the state is under a mandate to keep kids out of state custody who are on TennCare and to get them the services that they need. That’s improving. Where it’s not improving is in the private insurance. And we have more and more parents every day who call us with private insurance facing having to put their child in state custody in order to get care because they can’t get on TennCare either. Okay, and you’re going to hear more about that in the media. But that’s still a very prevalent mis-perception that I think a lot of professionals have that somehow if you put your child in state custody they will get the services that they need and that is not true. And parents who have done that know that it you have to just constantly, constantly--you have no control--and you have to constantly be vigilant about what’s happening.

Some of the other things that we came up with that continue to be problems are needing to increase the number of providers that take TennCare. There’s not enough mental health providers out there taking Medicaid Waiver and Medicaid programs and you guys probably know that as well. To increase the amount of case management that’s given to children with SED, better coordination of services. We work very closely in our model with bringing in school systems, as well as the primary care physicians and the mental health people. That’s one of the things that I think we have done as a result of this grant is really try to get people in what we call the wrap-around model, working together. I know my own staff--and we try to use things that exist--so like if a child has an M Team and IEP meeting planned then we just turn that into a service plan and invite the mental health people who may be involved. Pediatricians cannot often come, but they can send letters and give information and we try to make that more of a coordinated effort.

Let me think. Is there anything else? Did I stay within my 20 minutes? Are there any questions? You can look over the surveys and kind of get your own input. Yeah?

James: How does the carve-out in Tennessee work with primary care? Primary care involved in the behavior health care carve-outs or not?

Connie Nelson: Actually in or state and this is a new thing that we’ve just gotten and again I don’t know if it’ll stay once we get the new waiver, pediatricians can bill for mental health services and they’ve gotten some new codes where they can also bill for kind of like the case management consultation service. So that’s been a big push. And actually that’s come about I think as a result of Family Voices and us working together with the American Academy of Pediatrics because that’s always a big hassle so. Yeah?

Bobby: I’m wondering what that pathway is to the case management services that they’re billing. Is it through the EPSDT? I’m just interested to learn where that--because that’s a big issue I think--

Connie Nelson: Right. Right.

Bobby: --the medical home the extra time the things that it takes the financing and the reimbursement of that, one of the things that we’ve been thinking about is trying to use the enlarged federal benefits on their health check to pay for some of the extra time that’s required.

Connie Nelson: I could be wrong, but I think it is through the EPSDT I don’t know that it’s necessarily therefore again kids with private insurance.

Lynda: I have a question I guess for you and for the group because, you know, on one hand the [American] Academy [of Pediactrics] and other people work very hard to have a very broad definition, which I know this group knows so I won’t repeat it. But on the other hand your grant focused on a group within that broad definition. And I kind of go back and forth because, you know, our mantra, so to speak, is that there are similarities across all the diagnoses and we’re trying to get away from a diagnosis-specific and again disease of the month and I know when I talk to other parents their child could have a completely different diagnosis and we will come back to issues around health insurance, issues around working with the schools, issues of coordination, child care. There are a lot of similar issues and I’m just wondering A) how you work with Family Voices, but also whether or not you see--and you see and this is actually a question for the group--do kids with mental illness and seriously emotional disorders--are they kind of a separate group that we need to focus on uniquely or do they fit in this umbrella?

Connie Nelson: If I can respond to that, I think they fit and I tried to get a statistic over lunch. In our kids count book last year, you know, they do a count of all the kids who are "classified" as SED, but they also showed what number of those have chronic health conditions and it’s a high number. So, you know, I think we’re dealing with similar populations. I think the biggest barrier is the funding streams. And that’s what makes us have to label things the way we do. If we could find some way to join those funding streams--it’s the same thing between mental health and special education in EPSDT, we fight those battles all the time. So the funding stream unfortunately drives the label, I think.

Audience Member: And I think because of that funding stream there’s also separate systems. The types of services you have for mental health for kids are really different and parents aren’t aware of them. I don’t know if there are a lot of providers that are completely familiar with partial hospitalization, day treatment, all of these different types of mental health services that are available.

Connie Nelson: In Tennessee we have a model, and you may have heard of it. It’s called Cherokee Health. And one of the things that they’ve done is they’ve modeled combining physical and mental health services. They have everybody in the same building physically and they have the location convenient for the parents so that--and again it’s driven by the parent’s need--so if a pediatrician is seeing a child and they suddenly feel like there’s a need for a mental health evaluation, it can happen and they can set that up.

Audience Member: What were trying to do because we have networks of practices all of the state. It’s not like a staff model or like a contained health center where you can have those people on site. And there’s a shortage of mental health experts so we were going to try E-consultation, but because of the legal advice saying we can’t do that we’re going to do it telephonically so that we have an 800 number that goes right from a child psychiatrist to pediatricians in our network so that they can get advice on medication management and consultation, at least they can have some access.

John: Lynda, there’s another, I think, really pragmatic reason. First, clearly a lot of the issues are very, very similar. And there are a lot of children that have both these diagnosis. But you have a separate mental health lobby or group of people that feel passionately about it and it would be nice to bring them into the fold. I think we can be much more powerful down the line than if we’re separating out a physical condition from a mental health condition, same for the developmentally disabled. I think the more coalitions we can pull together the more likely we are to make a difference.

Lynda: Well, my family’s doing its part, right?

Connie Nelson: Yeah.

Lynda: For those of you that don’t know my husband’s the legal director NAMI, which is the National Advisory Alliance for the Mentally Ill. So, were working it out in my household!

Audience Member: I think if you can work it out in your household maybe you consider to promote that model because I think that one of the really deleterious side effects of the division is not only the competition for resources, but the continuing separation between the two systems for families and for providers. So, as long as we keep them separate you’re going to get special models. And we’re seeing this actually in our state right now where there’s been a lawsuit on mental health side and so there’s focus in our Medicaid Agency on mental health and a very narrow definition of kids with special healthcare needs because of the separation. That’s going to lead to new resources, new models, a care coordination model, you know, that’s going to get paid for and look differently then what--and that complication continues to make it almost impossible, I think, for families and providers to make sense of the system for kids.

Connie Nelson: I’ll give you one little tiny ray of hope. Actually, my real job is overseeing the statewide family support network, and that funding comes through SAMHSA. There are probably 50 statewide family support networks. This past year in order to get grant money, one of our stipulations was that we had to work hand and hand with Family Voices, which is good. I mean we already do that anyway. But that to me is at least a step in the direction of trying to get at least maternal and child heath care in community mental health services working together on the same page when it comes to children.

Lynda: Faye?

Faye: I have a couple of things to share about this. First of all in our Global Public Health and Maternal and Child Health messages that we give to families--put their kid in car seat, make sure you brush their teeth, don’t put Coca-Cola in the baby bottle--but we don’t give messages to families of any children or families with children with any kind of special need about raising mentally healthy children. Generally, what we have in Illinois Infant Mental Health Association, and they’re much more focused on parents with diagnosed psychiatric illnesses raising children, not about a mentally healthy society. My partner in Family Voices of Illinois, Joanne Carbonell-Rodriguez, is the director of a large urban early intervention program that’s hospital-based in Chicago. She tells me that she sees more and more--that the kids who are like two and three being diagnosed with speech and language delays and social and emotional delays, really are early manifestations of mental illness, but in our state and I suspect in many states there are the fewer resources there are for you to turn to. And I think that also maybe, hopefully, will be brought up when we meet with the FICC next month to talk about inclusive child care because, you know, every childcare provider will tell you that we have kids with special needs their the ones with the behavior problems. They’re often identified first, and then, how do you talk the family about it? Where do you refer them to? How do you get help for them? It’s very murky. I think we need to do a lot more work in this area.

Connnie Nelson: The Welfare to Work program will tell you that one of the number one reasons that people have difficulty working, when they have children who have mental health kinds of issues is because their children constantly are expelled from daycare, and that keeps them from working productively.

Audience Member: But, you know, what? Those kids aren’t even including the map for mental health services that are focused on the severe emotional disturb so, you know, as a commission there is a huge range of mental health needs that aren’t very important to the mental health community and our experience has been to look at the co-morbidity of kids with ADDH and their big thing of mental health community because they’re so busy bailing out the severe kids.

Connie Nelson: And I think part of the problem, if I might mention this, has been a recognition that mental health issues do exist in childhood. And so we’ve kind of worked our way down. We’re finally getting to the preschool and even the infant population in recognition because there’re still barriers that people recognizing that children, school-age children have mental health issues.

Audience Member: There is some really interesting data on some infant assessments now that are just fascinating around crying, sleep, and feeding that can indicate some very early.

Tom: How about shoving things down the toilet? Is there any correlation?

Connie Nelson If they’re two, that’s normal behavior.

Lynda: We’ve got a lot of families whose children are diagnosed with schizophrenia later in life and they all will say they couldn’t put their finger on it, but now looking back there were signs very, very young. I mean sometimes there isn’t, but when they look back they’ve seen the signs. Do people--go ahead--

John: Well, I just was thinking if you go this route, if we go this route, and I think we should, we really have to examine how we all communicate because you have your separate advocacy groups that drive these separate agendas. And the other thing is once you get into issues of identification, service needs, coordindation of care, the mental health are different. SAMHSA does a better job at identifying these children than what we have developed with our tools. And so there should be somebody at this kind of a meeting that represents the mental health community. It can’t be us taking it on. We don’t have enough knowledge to do it without really collaborating at this level.

Tom: We are working with SAMHSA at the transition level. My Health and Ready to Work initiative has been working with SAMHSA and they recently had a grant opportunity out that they let me review and I made comments on before it was released, and so some of the collaborative stuff and all that--right. But I can see just, you know, in general the issues are so similar that we really need to somehow get them working.

Connie Nelson: Having been in the mental health field for 30 plus years now, I’m excited that the health field, every time I hear them mention mental health I want to jump for joy. I really do because, you know, it’s like "Ah, at last!"

Lynda: Well, I generally think it’s the Divisions's vision in 2010 and that is throughout the 2010 plan, also six corp performance measures it is the health and the mental health and emotional and developmental it’s not one over the other right? But getting there I think has been hard because of some of the issues we’ve been talking about, because of the funding streams, because of, you know, the different advocacy groups and because of also, quite frankly, traditional divisions within the Department of Health and Human Services. I mean you’d never know that SAMHSA’s basically in the same building. I mean we do interact and I don’t want it to seem like we don’t. But there isn’t that coordination that there really should be. It could be much more. And part of it is I think, you know, we’re all operating on very shoestring budgets and each of our programs is one person deep. Susan, did you want to--

Susan:--Actually I think I have a question going back to your summary of report and I mean just to clarify, because I think that figure that you quoted about 60 percent of or was it 68 percent of families being counseled to give up custody of their children. These findings are coming from a family survey in Tennessee, is that correct?

Connie Nelson: Right, the surveys are--we do three types of surveys, one’s to the stakeholders and that’s mostly the people that are on the council that I mentioned. One is to families and most of those families that we survey are families who have contacted Tennessee Voices for Children because that’s how we get our data, and then the provider survey is sent to a number of mental health providers. Now this year--and we don’t have those results yet--they have sent provider surveys to pediatricians and family practice doctors as well.

Susan: So, are these numbers coming from the family report? Sixty-eight percent of your families surveyed?

Connie Nelson: Yes, yes.

Susan: And how large of a sample was that?

Connie Nelson You’re asking me questions I may not be able to answer.

Susan: Is that what it said?

Connie Nelson Did it say on there?

Lynda: But that is a natural trend, I mean, I mean the [inaudible]Law Center and Lawson have put out a huge report I think it was about a year and a half ago about--

Susan: Pretty consistent with that number.

Lynda: Yeah, pretty consistent. Well, I don’t know about the 68 percent being counseled to give up custody, but the trend being that families are being told in order to get benefits for your kids you must give up custody.

Susan: They’re backed into the corner. They don’t have access in any other way.

Connie Nelson: Yes, yes.

Audience Member: A lot of states are charged--

Connie Nelson: Not only are they charged, most states they have to charged with abuse and neglect because you can’t put the child in the system without first doing that and then they have to pay the cost on top. Right, right. But the good news is there’s a lot of states changing their rules now so that parents can--like more of the buy in--like the Family Opportunity Act--once provide buy in to Medicaid services. And so if a parent did end up putting their child into custody it wouldn’t be penalized first of all by being charged with abuse and neglect and then they could make an agreement with the Department of Children Services.

Lynda: Any more comments?

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