Children's Mental Health Services in the Era of Manged Care
Originally broadcast: January 24, 2001
Q. Hello everyone. This is Faye Eldar from the University of Illinois, School of Public Health, the Center for the Advancement of Distance Education. I'm happy to be with you today and to bring you another one of our webcasts in our continuing series on kids in managed care organizations, focusing on children with special health care needs and managed care.
Today's webcast is about children’s mental health in the era of managed care. We're privileged to have two very experienced and knowledgeable speakers with us today. Our first speaker is Karl Dennis who is the executive director of Kaleidoscope, Inc. in Chicago, Illinois. And our second speaker is Gail Johnson-Anderson, who is a parent from Laurel, Maryland. I'm going to ask each of the speakers to introduce themselves briefly and then we will get into our discussion. We have many things to consider today.
Mental health is a very big unmet need for many children in our country. The Surgeon General just issued a report on children’s mental health. We all know that since more and more families are being covered by managed care, this plays a great role and has a great impact on the services children receive.
Karl, could you please introduce yourself and tell us a little bit about you and about the work you're doing at Kaleidoscope?
A. Thank you Faye. I'm Karl Dennis. I'm the executive director of Kaleidoscope. This coming June, I will have held that position here in Chicago for 26 years. We are considered to be the developers of wrap-around services. We provide services for kids in the community and my services are always family focused, and based on not only the need for the child, but the needs to the family. To that end, we have traveled and worked in all 50 states, in Canada and in New Zealand and China, and are headed for Guam in a couple weeks.
Q. Thank you very much. It's a special pleasure to introduce Gail. Gail and I have known each other for about 12 years as a result of our involvement in a lot of different parent activities on the national level. Gail.
A. Thank you, Faye. I am currently working with a parent organization called Parents Places-Maryland and I'm heavily involved in health care issues for children with special health care needs. I am coordinating a project called Maryland Family Voices to speak on behalf of families of children with special health and mental health care needs. I am also affiliated with the National Families Voices organization and several other organizations such as the Alliance for Genetic Support Groups, now known as the Genetic Alliance, as a board member. I am very much involved in the health care of our children. I am a parent of children with special needs. My youngest has a diagnosis of Downs syndrome and my oldest has a diagnosis, a mental health diagnosis, which is known as borderline personality disorder. And she also has leukemia. So, I have been an advocate since my youngest son was born and it's been now for almost 15, almost 16 years. So it's not new to me learning how to negotiate the systems to make them better serve our children.
Q. Thank you very much, Gail. We would like to discuss first of all exactly what is childrens mental health? Karl, could you please explain to us about what that is and what are of types of services.
A. Well, you know I think that when we talk about mental health, we first need to talk about what do we see as a positive approach to mental health? And that's more around when people have the ability to cope with life from day to day when they're able to adapt to changes in their life, and when they have fulfilling relationships. When we look at the other side of the coin, the suggestion is that children will and adults will have some problems with behavior, with thinking processes or with mood changes or some combination of both of those or all three of those rather. And so those are the kinds of things we look at when we think in terms of mental health or, unfortunately, in terms of mental illness. I am not a person who basically likes the term mental illness or likes the term emotionally disturbed because I it doesn't give us an opportunity when we design services of looking at peoples needs to look at the things that people do well to look at their strengths. So I'm more inclined to think in terms of people being either emotionally or mentally unique, which gives us an opportunity to look at it from both sides.
Now in terms of services that may be available, I’m not quite sure I understand what you mean by the question. But there's a litany of services that are available, or should be available and provided to all children in need. Part of that would have to do with an assessment where we would need to go in and assess first what the issues are, what the problems are, and once again what the strengths are. And we'll help with that; through taking a social history and looking at the background of the child and the family.
We will then probably start to develop a plan. We would have to review that plan. We would have to be prepared to do modifications of that plan. And that plan would be primarily family focused, that we would look at the family's needs, not just the child's needs. Then the services included might be counseling or therapy and the difference between counseling and therapy may very well simply be a difference in the amount of education an individual has. But that therapy or counseling might be individual. It might be group. It might be family. I think that we would need to make sure that we set up services and have set up services for crisis intervention. All families have crises. We would need to look at art, music, drama and recreational services. We'd have to set up a case management process that would help us to provide services and coordinate service among the different systems. I'm sure at some point Gail will probably tell you how many different systems that she needed to be involved with in order to make services work.
We need to look at transitional services. We need to look at respite services as part of that process. And probably if we look at it from a programmatic point of view, we know that there is in-patient in hospitals. There's out-patient services in clinics. There's residential care. There's group care. There's treatment, foster care, services in transition, respite service. But my favorite service, or my favorite intervention, is in-home services I think where we're able to go in and help families kids penetrating deep into the system, that we have a wonderful opportunity there to prevent that penetration from happening.
Q. It sounds like there are many different types of services needed in order to address children’s mental health and I know when we're used to thinking about physical health and medical specialists; we say well if you have a heart problem, you go to a cardiologist or if you have a skin problem, you go to a dermatologist. Who are the providers of mental health services for children?
A. Well, there are private providers in the community that provide that service. There are government programs that also provide that service, as well. The difference for me between mental health services and physical health services is that I think there is a tendency for you to be successful with the same types of treatment always in certain circumstances in physical health. If I break my arm, then the treatment is pretty much the same. However, when we talk about people, everyone is different. Everyone's mind is different. And so the services need to be more individualized. And the more need for individualization, the more an opportunity to develop a different array of services.
Q. Lately we hear a lot of discussion about infant mental health. Could you please explain to us what that is?
A. Infant mental health. It's hard to separate the difference between health and mental health. In order to be physically healthy, you need to have good mental health. And in a lot of instances, in order to have be physically healthy, your mental health needs to be good. Now we developed one of the first pediatric AIDS services in the country here. As a matter of fact, it was the third one. We would take kids in, and what we learned very early on was how important the bonding was for those children. The children that we took right out of the hospital immediately and placed with families that could love them and who could care for them seem to do much better and have less problems later on than those children who had moved from placement to placement and system to system. We see today especially for kids in our child welfare systems, and even our mental health systems, who have moved from placement to placement or person to person and we see how difficult their life becomes. And so in terms of the infants that we come in contact, that bonding, that consistency I think is the primarily thing that helps to promote good health.
Q. Another question. Are mental health services only for children who've been diagnosed with a mental illness?
A. Of course not. Not in my mind. It's unfortunately that you need criteria sometimes to receive certain services in mental health. I worked with a family in another state and what Dad would always say was that if the criteria, if there was six criteria for services, no matter what system it was, then his child met only five of those criteria. His wife who then was a primary care taker for a young man who had a lot of issues and was extremely difficult, was not doing very well herself in terms of health. After plugging services in, primarily services for her as well as to the child. Then a year later I ran into her at a Federation conference and she was much improved and she was doing much better. This whole idea of we have to have four or five criteria in order for services is one of the things that I think in this country we basically have to change. If people need services, then we need to give them services.
Q. You know our discussion today is revolving around mental health care and managed care for children. Can you give us a little bit of background about how and why it is that mental health services are often provided in a separate service delivery system for general health care for children?
A. Well you know, this is one of the things that is really difficult for me because I've seen the growth of managed care and behavioral health. I've been rather critical of what has occurred. In one instance, back again to in physical health, we tend to be able to identify a certain treatment process that will pretty much work under every circumstance, and most circumstances. And that's not necessarily true in behavioral health. What has happened is that we have taken that same health approach and transferred that to behavioral health. So as a result, the interventions are limited.
The time frames are limited. And if you look around the country at a lot of the managed care systems that have gone into behavioral health, they have not necessarily been very successful because of that reason.
Gail: I'd like to comment. You know it's always been a question in the back of my mind and every opportunity I get to ask someone that may be involved in decision-making as far as policy and legislation is concerned, is why is mental health a separate system from the health system. And it's almost as if sometimes our systems just sever our our minds from the rest of our body, which is not, I think, a very effective practice simply because we're whole human beings and we should be viewed as whole human beings within the context of our families because it affects the whole family.
Now, no one knows much and I got one answer previously that the advocates wanted mental health separate from health because they didn't feel like they were getting equal treatment as far as getting the kinds of services that they need, when needed, and not having so many limitations on the service that were delivered to their families. And I think that may have been the strategy, but it still has not proven to work well. Now as a parent, I've had to encourage and facilitate communication between the mental health system and the health system, let alone be in another system like the military system, as we were formerly military dependents.
Trying to negotiate all these systems is a nightmare to families and the professionals that work within them. Then there's the issue of confidentiality and they can't talk to the other systems unless the parent is savvy enough to know that you have to facilitate that communication in order for to have continuity of care.
Karl: You know, I really agree. And I think that one of the issues certainly, in terms of children’s mental health, you know is the issue around stigma. You know if you break your leg or if you have a physical ailment or something, people are a lot more sympathetic to you than if it's a mental health involvement. And that stigma is carried, and if you look at and the way we do assessments and the way we look at providing care in mental health, we sit down and we start out by talking about everything that's wrong with a child and everything that's wrong with that child's family. And very seldom, if ever, do we list those things that the family does well or that the child does well. I think that in order to have a good assessment or to put a good process together for people, we have to look at it from both sides of the coin.
Gail: I agree that you cannot build on strengths if you don't even acknowledge them.
Faye: Gail, I really think we could learn a lot from the experience of you and your family and what you had to go through in accessing mental health services and I'd like you first to tell us about how you became aware that your child needed mental health services and what did you do when the need became known?
Gail: Well, my son was born with a disability. And my daughter's mental health needs did not surface immediately. It surfaced with the onset of adolescence. Because my son was born with a disability, I quickly learned of what it what healthy is. And healthy means mind, body, and soul to me. So if it were not for my son being born with a disability, and my being linked with other parents at other grassroots organizations that were supportive and provided the educational information that I need, then I would not have known that it was a mental health issue. I would have thought it was a defiant behavior onset with adolescence. But it was more than just defiant. I think what's important for families that may not have been in the situation that I was in for them to know, and I think it's a public awareness thing and I think it's everybody's responsibility to paint a picture and to make people aware of what good mental health is.
I think personally our society is not really mentally healthy in a lot of aspects and we teach things that are not necessarily healthy sometimes and inadvertently and not purposely. But people’s perspectives usually come from their cultural background and their child rearing practices. And what you live with you've come to, and learn as you grow, you come to accept that as a normal lifestyle and if you don't know another way, then you can only practice what you know.
But again I think it's a public responsibility. I think it's everybody's responsibility to teach folks, the general public, what good mental health is.
Faye: Gail, what kind of health insurance did your family have at this time, and did you know when you were starting out whether or not the coverage for the mental health was the same as for the regular health care for your children?
Gail: I did not know that it was not the same.
Faye: And what was the health plan at that time?
Gail: At that time, we were covered under Champus. We were military dependents and Champus would only cover a certain amount. My daughter had to be institutionalized for 14 months--and it was a must. We were in a crisis, and Champus covered a certain time limit of her institutionalization, and when they reached their cap for her coverage for Champus, then we and the institution had to apply for Medicaid to for her extended stay because that was the only way to get it covered, get the bills covered.
Faye: Did somebody in the insurance plan assist you with this or explain it to you?
Gail: No one explained much of anything to me. I was being labeled at the same time. I was labeled and blamed at the same time that they were "providing services to my daughter." Some of the expressions that were used when I was explaining the behaviors, and the coping skills and the issues that we had, they were interpreted by folks, first of all folks that had not been exposed to say, an African-American community and their child-rearing practices. So they were somewhat biased about how much information to give me, and whether or not to explain all the processes that were involved.
Karl: I think there's another issue there, too, and Gail can correct me if I'm wrong here, but my experiences also tell me that we have always been in children’s mental health more child-centered than family focused. Who has the insurance card, who has the Medicaid card is the one that basically gets the service and what happens is as I was suggesting earlier, with that family that I had worked with, there are a lot of stresses involved in having a child that has some issues in your home or for the siblings of that particular child. And so one of the things I think that probably when we talk a lot about service direction and may very well be missing, is that issue once again that we need to be prepared to provide services to the entire family.
I think Gail really brought up something else that's really important, too.When you talk about the difference between physical health and mental health, you know even if a child falls off a roof that he didn't have any business being on and breaks his arm, there's going to be little or no suggestion that that the parents were responsible in total for that occurrence. However, if the child has a mental health issue, there's always that cloud over parents and there's always that blaming and I think that Gail alluded to that and I wanted to re-emphasize that.
Gail: Yes and I agree with you. It took quite sometime before we were came into a service program or a program where the professionals or a professional who was working with my child, did not blame me for what was going on with my daughter. And it was so refreshing because I was so I'd grown so accustomed to being beat up because of my daughter's issues. We had some other issues, too and yes it did affect the entire family, and most of the service delivery and mental health usually is as you mentioned before, "child centered." It is so important to view the child within the context of the family. And if the child is sick, the family is sick.
And I do remember that I couldn't get any help for myself, and I actually had to basically check myself in on the psych ward at a local hospital in order to get myself the kind of attention and support that I needed because I was, as any family that has a child with mental health care needs is, at risk for having mental health care needs themselves--any parent. So I was no longer able to care for anyone else. And mind you, I had a baby at home who was recovering from open heart surgery at the time. So I had to take care of myself. I got to a point where I had to take care of myself. Otherwise, I was no longer able to take care of anyone else. And I had three kids.
Karl: And so that really underlines the need for respite services as well.
Gail: Absolutely.
Faye: And for family support services and again these are the types of things that are rarely, if ever, covered by any kind of insurance plan and just about never covered by managed care which obviously is an area of great concern.
Gail: Yes.
Karl: In some instances where managed care systems have moved into this, is a process where they're willing to provide in-home services to families is incredibly limited.
Gail: Yes.
Karl: I mean, you might be able to get two visits a month with a limit of three months. And in these circumstances, that's not going to be sufficient to help.
Gail: It's a band aid.
Faye: What other resources were out there, Gail, to address the needs that the insurance didn't cover? Were there any needs that you and your family had that went unmet?
Gail: Well. Luckily, I was one of the parents that would not accept no "we can't give you any services", because I know if I couldn't get it one place, I had to get it some place else. There were other resources. Most of the support and the resources that I got I found through contacting grass roots and parent and family organizations.
There are other little pockets of resources around every community that people just don't know about. And a lot of times when we're talking about mental health, we're going back to that stigma. You have to be willing to disclose and talk about what's going on with you irregardless of the stigma, in order to access those things and many families because of the stigma, they don't reach out and become unable to manage living in the community in which you live. There are so many obstacles and so many barriers to getting services in managed care programs. I don't think they have a very good concept of what all is involved in serving a family that has a member with mental health care need.
I am a parent of a child with a special health care need, with a special mental health care need. But I'm also a sibling of two brothers with schizophrenia, so I have a broad perspective of how much the community, how much of a role a community actually has to play in order to support a family with one member that has mental health care needs. And going back to the mental health diagnoses and the mental health criteria that you have to meet in order to get the services, then those things may be somewhat offensive very often. For instance, manic depressive disorder has now changed to bipolar disorder. Well, very often those labels are offensive. But you know what? They are a ticket to services, you know, and there are other people around that don't have a "specific diagnosis" which may not meet the criteria in a managed care organization's list of diagnoses, and they can't get services. I consider myself blessed enough to be a resourceful parent.
I have learned to be an advocate prior to the onset of my daughter's diagnosis. And also living with depression, with a mental health care need, my brother's. So, I do think that I had an advantage but there are a lot of things, family support, respite care, coping techniques. There are other issues that families have that they may need help with that may be compounded with the onset of someone's mental health diagnosis. So there are a lot of things that need to be surrounded and now health care also affects the mental health, and the mental health also affects the health of any family or any individual, so they're not separate.For some reason ,and I guess it's for coding purposes or billing purposes, but if a person has mental health needs and they're on medication, the primary care physician is sometimes the person that monitors the medication that the specialist has given.
Karl: I think that there I think there are some really good points in there, and a couple of things that I would suggest is one of the things that both families and professionals are often faced with they want to be creative and do things in a different way. The first thing we have to learn is reframe everything into a framework that fits into a billing process so that you can get services. The other thing that I think that is also just as important and scary, is that a lot of families become very isolated when they have a kid. All of a sudden the kid tends to act out a lot so they may not be welcome in families' homes, the friends homes, in churches, and in schools and so there's isolation that occurs. And I think that probably in the last 15 years, the most successful thing that has happened in terms of helping people to relieve this has been the family organizations that have been able to assist families and help to teach them about what services are available in their community. The other thing that I think that's been useful, but not to be over dependent upon it, and that is the families themselves. One of the things that I will ask people when I am attempting to help them put a plan together for services is when you had a crisis in your family, who are the people that you called? Because normally if they can come up with the names of two or three people, those are people who have been resources to them in the past who can then again be resources possibly to them again. I am always not only surprised, but so impressed, how families can pull together and provide resources for those members in the family that need it.
Faye: You know not all families have the resources or have people to assist them.
Gail: Yes.
Karl: Correct.
Gail: Right, and I was one. We were a military family, we were not in the area and I was able to find other parents-friends that became lifetime friends-that helped me It was not family members that were there to help me and support me.
Karl: Well and I think, too, that the brightest people that I know, the real professionals, a lot of times, in terms of knowing what exactly is available what resources there are really for families. For example, most of us who are in contact with a lot of family organizations, if there's something that we feel that we need to know about special education and we're not sure about--I mean I got two or three parents that I can pick up the phone and can call and they'll tell me: Karl, turn to page twelve, and look at paragraph three, primarily because they have lived this. And for a lot of professionals, it's a it's a day job. It's not a 24 hour-seven days a week job.
Gail: That also brings a good point out, Karl, that how important it is to for parents and professionals to build those partnerships. That is so important that you're able to develop those partnerships and those partnerships help you facilitate accessing the services the care, the resources and the information that you need in order to provide services to the families.
Karl: I agree.
Faye: You know, I shared with both of you in previous discussions that before my daughter was born, I was a special education teacher trained to work with children who had behavior disorders, and worked in a variety of settings and we were taught nothing about families or parent organizations collaborating, and I knew nothing. Now, I regret some of the things that I told parents when I was in the classroom. But I simply did not know any better and now as a parent, my best source of information is always other parents.
Karl: Well, Gail, you know one of the one of the real sad things in human services is that we do not do a lot of cross training in our universities, so that if your degree is mental health, you may be a wonderful mental health technician but you really don't have a clue as to what a probation officer does.
Gail: Right.
Karl: And that’s true in child welfare as well as in special education. Anything that we would look at in terms of the future and anysuggestions would be that we have to start to do that cross discipline training.
Gail: I agree. I agree 100 percent. And I think some of the universities that I've been affiliated, with they know a little bit about it, and they've made an attempt. Kennedy Institute here in Maryland has made an attempt to include families in their public health training for children with special health care needs. I know that the University of Hawaii does have parents come in and speak to their classroom of professionals or paraprofessionals working in either health and/or special education.
But not all universities are as receptive to it, nor do they understand the value of it. And that's why people like me, as an advocate, I have a job to do and there's always more doors to open and there's always more things to do. Not only do we train parents but we cannot say that we are partners and don't agree to help train the professionals that work with and care about our children.
Karl: You know I agree, Gail, and one of the things that has always concerned me, going back 15 years and working with parents in the movement, is that one of the things that seems to be overlooked a lot was the fact that it was good, we could bring them to speak, we could get them involved, and what we wound up doing is working them to death because very seldom, if ever, did we ask the question what do you need in your life to make it possible for you to do this kind of advocacy.
Gail: And very often we need support to do that. We find among some of the parent leaders that I work with, Faye is very familiar with this. Very often, we find ourselves in a position when we need help, we really can't get the help and support that we need because people see us as leaders--so you've got it all together and they really believe that. But nothing is always all right, you know, we have to be mindful ourselves. When we're working in partnership with service providers to insure that they understand we need the support in order to make this possible and sometimes, I want to bring in other family members because I can't do it all and I learned very early on as an advocate I can't do it all, nor can I help everybody.
Faye: Now, Gail, another question for you about coordinating between systems, did you have a need for your daughter to also access services from special education and how did it work out to coordinate this with the services that were covered in the health care sector?
Gail: Boy, that's a loaded question Faye. I think I was able to get some documentation signed because she was in an institution and I was able to get some concrete documentation saying that she did have a mental health diagnosis, and because I had been so well educated by other parents and I had learned about special education law, I was able to take that information to my daughter's school and say look, my daughter needs special education services. She had already flunked the 10th grade. I had to let her fail because I couldn't push her to do anything more. Sometimes in raising kids you really have to let them hit the ground and that's something I learned through other, older parent leaders that had children with mental health care needs. These are things that you just don't learn in an institution.
But I did learn that I could take that information to the school and request testing, submit the assessment reports, and call and request an IEP [Individual Education Plan] to be developed for her. She was so resistant to being in special education because of the stigma of being in special education. The stigma of being in special education was more important to her than the stigma of her mental health diagnosis at that time, so we used that as a strength and she was able to work her way out of special education, but I could not expect the mental health system that was providing her care to either to develop any kind of transition plan because they were unaware of what was available in the community. They were unaware of what my rights were in special education law. So I had to take that on myself and facilitate the communication between the two systems. But we were dependents of the Department of Defense. They were not helpful. As a matter of fact, I was the Exceptional Family Member Liaison for Army Community Services in the area in which I lived. So they would have referred me back to me, so it didn't make any sense for me to try to get their help when, in fact, their responsibility was to insure that the services available in the community which I lived were there. Otherwise they would take on the responsibility of reassignment.
Karl: Let me also suggest, I don't think that there's anyone that would doubt, that there's a lot of turfing that goes on between between systems. And depending in what state you live in, it will be determined where most of the dollars are in services in a particular state. One state, it might be children’s mental health, so that means that most of the resources will be held by children's mental health. Unfortunately, in a lot of states, those services are held in child welfare. We've seen parents who've had to give up parental rights in order to get services for their children because that state primarily provided services through child welfare. We've seen issues where we've had not the strongest of special education systems in some states. And I think that one of the issues around special education is the way that the law is interpreted that suggests that if you can get in on an individual education plan, and then education has to pay for that service. I think education traditionally has been terrified that they do not have the resources, they do not have the dollars to provide those services, and that's why once again I think that it's imperative that we have collaboration between these different systems. I personally believe there are probably enough resources in any community to provide the help that's needed.
Unfortunately, what occurs is that once again you're faced with criteria. So you'll need these criteria to get new health service or you'll need these criteria to get special education services. Child welfare may be holding a bunch. Even juvenile justice may have a bunch of resources. Once we learn how to combine these resources and lend that criteria then I think that we're going to be in better shape. You know, parents like Gail, would certainly have more options in order to look at for services.
Faye: We’re starting to run out of time and we have many more questions and this is a very large, complicated and very important, interesting issue I want to ask a couple of the other questions as we move along. Now, I’d like you to talk about the importance of cultural competence in addressing children’s and families' mental health needs.
Karl: You want to start Gail?
Gail: That’s a very important subject and I think it's a very big issue. I don't think, well one thing I'd like to say up front is cultural competence, it's not something that we achieve. It's an ongoing process. And being sensitive and aware of the different cultures within a community in which you serve is going to help you along the way as a provider, because you know I'm not just a parent. I'm also a provider of services to other parents. And very often I find myself in a situation where I have to ask families about their culture where they came from, their child rearing practices, how disability is accepted in their community. Otherwise I don't have a clue as to how to service them. I can only go by what I think they need and providing people services according to what I think they need is doing them an injustice. It's very important that families identify their strengths and their needs. Otherwise, you may not be able to help that family at all.
Karl: You know, I think that I was fortunate that I served on a minority affairs committee for the National Institute of Mental Health at Georgetown University, and four of us were picked to write a monograph on cultural competence, which, from my understanding is used tremendously in mental health systems. But you know I prefer to kind of dramatize it by maybe talking about a specific situation.
On the west coast, a young Native American youth who had lived on a reservation all his life came into the school system. And the first day that he was in, he was welcomed. People did the best they could to help him but it became clear that there were some items in the classroom that were missing. And when they found them, they went in his desk and he was asked did he steal those things and he said no. And the teacher backed off knowing this was his first day and it continued to happen and the child got more and more depressed. Eventually people started trying to pull people in to do an assessment and the assessment suggested that he would be better served in a residential program somewhere. It was at that point that one of the educators called Terry Cross who runs the Northwest Indian Institute, and they asked him if he could share some light on it. And he talked to the child and the issue seemed to be that the child came from a reservation where everyone lived around the cross roads and you ate at this house or you slept at this house and as a result, none of the things that was owned by that group of people was individualized. It belonged to the group. Here was a child who was not used to individual ownership, that was thrust into that. No one understood that process and he wound up possibly headed for a mental health system because they had not had cultural competence to understand those significant issues. Now I don't like to just suggest that cultural competence is ethnic issues but also regional issues and assimilation issues, as well. And I think that it is imperative that it be part of any process for providing services whether it's mental health or any other system.
Gail: I agree with you Karl, a lot of times, we say many professionals in practice--they should be culturally sensitive. Well I think that's only a part of it. And I think it's a big picture and I think it's a lot to learn. But I think it's vital and effective service delivery.
Faye: I’d like to ask a question now about what were the major areas of concern and unmet needs related to children’s mental health and our health care system today?
Karl: Wow. Well, I think we discussed some of those, and I think one of them is more of an emphasis on family preservation services. Not only the length of time for those services, but the intensity of those services. I think that's one of the unmet needs. I think that we talked a little bit about our educational systems where it's imperative that we start to turn people out of our universities that not only understand children’s mental health, but understand the focus of the need to provide services to the family, to understand the need to involve the strength as part of the processes, and the ability to involve the community in that service. The families should be in control and they should be making the decisions about their children and it's going to be a big leap to take people in that direction.
Faye: Gail, what advice do you have for other families whose children need to access mental health services?
Gail: Well, I would say you must persevere. Be resourceful and creative when accessing services. If someone says no, we don't deliver that service, then your next question should be: well, do you know where I should call? Accepting no service, no we can't provide you any services, is unacceptable. Strategize with other parents and grass roots organizations. Build your support around you and your family. Contact your professional allies or professional partners to see if they can help. My son's developmental pediatrician was helpful to me for my daughter, because I couldn't get help anywhere else. We were in crisis, and I had to go to my son's developmental specialist that serves children with developmental delays in order to get placement for my daughter who was 12 years old. Maintain your health. As a parent you are at risk any time you have a person within your family that has mental health care needs. Pick your battles and get help for the other family members. That's my advice to other families.
Faye: I think that that's really good advice and applies to anybody who has any family member with special needs. Do you have some specific advice for families who have problems getting coverage from their managed care plan?
Gail: Yes. If they won't cover something, get it in writing. And once you get it in writing, appeal the decision. Every state has an insurance commissioner and they also have I an Attorney General's office to help you through the appeals process. The appeals process may be complicated, but there is an external appeals process and an internal appeals process. Always exhaust all your avenues and if you can't get it that way, there may be other resources in the community. But always maintain some connection with the grass roots organizations in your communities. They typically know how to negotiate some of those things and get their services that are not readily available to your managed care organizations.
Faye: For all of the people who are tuning into the webcast, I'd like to let you know that in the resource section, we will have a list of major organizations related to children’s mental health. This will be a way for you to go to these web sites and find out about resources in your state, who can then refer you to things in your own community.
In closing, what else do families need to know to raise children who are mentally healthy to deal with the mental health needs and future direction?
Gail: Karl?
Karl: I suspect that Gail has hit it, in terms of knowledge is power. And knowing where those resources are, making some contacts with those universities, possibly, who have provided some of the leadership in looking at these issues. Portland State University Research and Training Center, a tremendous amount of literature has been written on parent involvement, and how we need to include them in the process. I don't think that there's any substitute for what you know. I think the other issue, of course, is and I'm glad you said that, Gail, because the parent organizations in this country are tremendous resources as well. I think that it is imperative that we all learn about what research is available out there in the community and what it what it means. And I think that there's this whole issue of respect for the people that we are privileged to provide services to, as far as professionals and parents.
Faye: I want to thank you both very much. You've both very knowledgeable, resourceful, and very insightful about this complicated issue, one that is a particular challenge in this day and age, and I want to thank you very much for sharing with us.
This now concludes our webcast in the ongoing series of managed care for children with special health care needs. This is coming to you from the School of Public Health, Center for the Advancement of Distance Education. We are the Community Managed Care for Children with Special Health Care Needs Project.
We'd like to hear from you about how you liked this webcast. You can call us at 312-996-2233. You can visit our web site at www.uic.edu/sph/cade/kidsmco.
Thank you very much for joining us. We will have a new webcast broadcast on our web site on the fourth Wednesday of every month at 1:30 p.m. central standard time.
End of interview.