Autism & Managed Care Options
Originally broadcast: January 23, 2002
Faye: Hello, everyone. This is Faye Manaster Eldar from the University of Illinois at Chicago School of Public Health, Center for the Advancement of Distance Education. I’m the Family Coordinator for the Quality Community Managed Care Project, and I’m happy to be with you today to bring you another one of our webcasts in our continuing series on kids and managed care organizations focusing on children with special healthcare needs and managed care. Today’s webcast is about autism and health insurance. We’re pleased to have two experts in this field with us today: Zoë Mailloux, who is an occupational therapist from California, and Lisa Columbus, a parent, also from California. I’d like to ask Zoë first to give us some background information. Zoë, could you tell us exactly what is autism? And is it a developmental disability or a mental disorder?
Zoë: Well, there’s--much has been learned about autism, especially in the last 10 to twenty years. Autism is considered a spectrum disorder, which means this--people diagnosed with this disorder function in a very wide range, so some diagnoses of autism involve very mild kinds of symptoms and other people have much more significant difficulties. It is considered developmental, although there is a mental health diagnostic code as well. So it probably crosses the boundary between a developmental and mental health-type of disorder.
Faye: And what does or does not cause autism?
Zoë: Well, that’s a very good question. There are a lot of people spending their time researching that question. Quite a few of the prominent researchers in autism believe that there is a strong genetic base. There seems to be at least certain types of autism that probably have a hereditary component. most of the research seems to show that whatever causes autism occurs very early--prior to birth. The types of dysfunction in the brain that are present in autism seem to have been there early--in utero. So it’s possible that people are predisposed to this disorder and then something in the environment might trigger it occurring as a full-blown problem--something in the environment, some toxin, possibly a virus or some kind of, you know, other illness. But that’s about what’s known at this point. There are a lot of theories, but nothing definitive.
Faye: Okay. Now, how prevalent is autism?
Zoë: Well, autism seems to be increasing quite a bit. I’ve seen numbers that range from increases of 200 to 300 percent. I think most figures estimate that autism occurs in between five to 15 children per 100,000.
Zoë: Is that right, Lisa, or is it more than that?
Lisa: Yeah, it--yeah, that number is correct.
Zoë: Okay.
Faye: Do you know how many children there are with autism in the United States?
Zoë: You know, I’m not sure; the numbers seem to be changing so rapidly. I’ve actually--have tried to find that out because I recently was writing a couple of chapters in textbooks, and I tried Center for Disease Control and some other resources. I gather that there’s been such a huge increase in diagnosis of this disorder in the last several years that it’s been hard for anyone to put out a number. I don’t know, Lisa, if you’ve seen a specific number out there, but--
Lisa: Well, I think that what’s happening is that because it is, as you stated, a spectrum disorder, people are including--some studies will include Asperger syndrome as part of that. Some of the Asperger parents are trying to have that taken out of the autism label and on its own because the circumstances between the two disorders can vary so much. So it just depends on what you’re reading. If articles are including Asperger and different types of pervasive developmental disorders within autism
Faye: Lisa, what is Asperger syndrome?
Lisa: Asperger syndrome is, you know, it’s one of those disorders--again, it falls under the pervasive developmental disorder category. The question is that there are some autistic-like symptoms of these children. Basically the differences between a classis autistic child and an Asperger child, in my experience, has been that the Asperger child has language--they develop their language patterns; they have mostly socialization problems. The part of the brain has been affected in the socialization area, so these kids tend to, you know, have problems integrating with other children, but they have language, they have--they are able to learn self-help skills. Whereas in classic autism, as in the case of my daughter, when we’ll be talking about her, you know, she is still developing language; it’s been slow. So, you know, those are the slight discrepancies but, you know, Asperger adults actually, you know, and a lot of people are undiagnosed with this disorder, you know, --they get married, they have, you know, productive lives, they do deal with socialization problems and difficulties, they tend to, perhaps, choose fields where they’re not having to interact with the public so much. Whereas a classically autistic person, you know, you’re not quite sure exactly what the range is going to be and their ability to go out into the workforce later on.
Faye: Zoë, could you tell us a little bit about how autism is treated?
Zoë: Because there is not an exact known cause or exactly where in the brain the problem is; there’s not a specific, say, medication-type treatment for autism. And my experience is that most people --as far as parents, educators, and people in the medical health fields, use a pretty multifaceted approach to treat autism. There are quite a few. I think the most important thing that everyone agrees upon is that early intervention is really critical--that the sooner diagnosis can be made and treatment can be started, the better. The health-related therapies, such as speech therapy, occupational therapy are usually very important in the treatment program. There also is often a behavioral component to look at--behavior management strategies. And then the educational programs have become very involved in early education, early preschool, and even before preschool programs for children with autism.
Faye: Now, could you explain to us, please, what is occupational therapy and how is it used to treat autism?
Zoë: Sure. And as an occupational therapist, I always wished that were a more simple question than it is, but occupational therapy is a very broad field. We look at a person’s occupation in terms of what they do in their daily life that’s important to them. So that while we might think of occupation as one’s work, it’s also--for a child, a child’s occupation includes their ability to play, to be a student, to start to learn how to take care of themselves. An occupational therapist looks at how disability has interfered with the occupations of daily life, and then we provide therapy to help a person be more successful in those roles. With a child with autism, many of the symptoms of autism that relate to difficulty relating to sensory information; children with autism often are over or under sensitive in their response to touch, sound, movement; so we would provide activities that would help them to be more comfortable so that they can participate and play in a more typical way. And we would also be concerned about their social skills and their ability to interact not only with toys and objects, but also with their peers and other people.
Faye: Now, Lisa, could you tell us a little bit about your family and your child with autism?
Lisa: Yes. I have a wonderful, supportive husband, which I think is the critical part, at least when you have a child with developmental disabilities that, you know, spouses need to work as a team and, you know, sometimes it takes a while to get that process going. So my husband Peter is a great guy. I have two children. My oldest daughter will be eight at the end of the month. Her name is *Elanie, and she is the one who autism. And then I have a second child named *Katherine who is five years old and has become a mini occupational therapist in our household. So my daughter with autism is just a delightful child. You know, I don’t even know where to begin. She’s an absolute blessing to us. People look at me surprised when I say that, but she has taught me more about how to be a person and how to be kind and loving and compassionate than I could possibly ever teach her as a parent. So it’s a, you know, it’s been a mixed blessing actually.
Faye: How did you find that she has autism?
Lisa: Well, you know, that’s a loaded question too, because it’s a process when you go through trying to figure out what has--what is going on with your child. And in my case, my daughter, you know, I had a normal pregnancy, I had no problems, everything was peachy keen at delivery. She was bright and alert. In her first year of life, you know, I know she had a lot of ear infections and that she had a lot of sensitivities to things, but, you know, so do most other infants. And so I would bring it up to the pediatrician and they would say, "Well, you know, some children are a little more sensitive than others." Okay. Well, I have a bit of a sensitive system, so I’m like, okay, I understand that. When she got to be about two years old, I started noticing that language was dropping off; that words that she had acquired when she was 16, 17 months old just disappeared out of her vocabulary. And it began to concern me that her language development--that was really the first key that I noticed as a parent that, you know, she wasn’t picking up on the sounds. And we had put tubes in her ears. And the concern was okay, does she have a hearing problem. So we went through the ABR hearing test where they, you know, knock out the child and do an EEG on them. And her hearing was perfect. And we couldn’t figure out why a fire truck could go right by her with this perfect hearing and she would never look up. And, you know, she would always--she was relatable. I mean she loved my husband and me and was very affectionate and, you know, she didn’t show all the traditional signs that one would think of an autistic child at the beginning, because a lot of her behaviors were baby-like because she was so young. But it was mostly the language that I noticed, and her sensory issues. That she could run into a wall and not cry. And everybody said, "What a tough little girl she is!" And the reality is that she was hyposensitive, meaning it takes a lot of input for her to receive the message that she’s hit the wall. So what happened was my husband and I looked at each other one day and I said, "You know, I really think that there’s something going on." And he said, "Well, are you sure you’re not being too hard on her?" And I said, "No. You know, I just--I have this gut feeling that something’s not quite right; we need to take it to the next level." So after we got, you know, the hearing test results back saying it was positive, I had to beg the pediatrician to go make to make an appointment for a neurologist. So I, you know, through my plan, I got the neurologist and we went to see him. And, you know, I’m beginning to think that he had some autistic tendencies himself. He didn’t really see much with her. And he, in fact, told me and wrote in the report that he didn’t feel that she was autistic because she was too socially oriented to her parents. But, you know, I pushed it further and then we were referred from him to a developmental psychologist. And, you know, this whole process--I was in my last trimester of pregnancy with my second child. We had to take a small break so I could deliver the baby, get her situated, and then continue trying to figure out what’s going on with this kid, because as the months were going by, the language wasn’t coming back. And I felt like she was going down this hole and I couldn’t reach her, even though she would sit on my lap and she said "Mommy" and "Daddy" and she had, like, maybe five words into her vocabulary. And I thought, you know, this just isn’t right for a two-and-a-half-year-old to have this limited language. So, you know, then people were talking about aphasia and the inability to speak. And, you know, some people were throwing out all sorts of things at me, including the pediatrician. And I finally nailed the developmental psych down and said, "What is going on?" And she said, "Well, I think it’s PDD, pervasive developmental disorder, NOS, not otherwise specified." Which is basically a catchall statement of, we really don’t know what the heck’s going on, because your kid doesn’t exactly fit the criteria for autism, but then she doesn’t exactly fit the criteria for a aphasia or these other kinds of disorders that are within the PDD spectrum. So upon that information, we were at a cocktail party that night, and I was talking to some people, and I said, "Well, they just diagnosed my daughter with this PDD-NOS." And this woman who happens to be an audiologist at Children’s Hospital said, "Oh, well that’s just a nice way of saying your child’s autistic." So as I about dropped my drink, you know, thinking, oh my gosh, what is this, I made my way to the books of autism because no one would be honest enough with me to bring up the word, much less anything else, and sure enough, I started seeing some of the symptoms. Now when re-read the information that I read that night, just this morning, to see what it’s all about. At that time, she only maybe had two or three characteristics of what they were writing about because she was still so very young. Now I read it and she completely fits the description.
Faye: Did you have any prior knowledge of autism before your daughter was diagnosed?
Lisa: Well, I took a lot of psych classes in college. My degree’s in speech communication, so I spend a lot of time doing, you know, developmental types of courses for language and stuff, so I--the only way I had seen an autistic person was going to the State hospital and kind of observing them in that capacity--and, of course, these are terribly involved people--that I had any kind of recollection of. And also, you know, the benefit of the movie "Rain Man," which is kind of a plus and a minus. You know, people, I think, after that movie became more aware of the disorder. The unfortunate thing is everybody thinks that your kid can count toothpicks and do phenomenal math equations and has that type of persona, which is not necessarily the case.
Faye: And what types of treatments and services does your daughter receive at this time?
Lisa: She receives occupational therapy--and for her sensory integration problem. She does have sensory integration disorder, which is, you know, the imbalance of her sensory system. She also receives speech therapy. Right now, because she is in elementary school--she’s in the second grade--we’ve changed the way the therapy is administered. Now she receives one hour of speech therapy in the clinic environment following a one hour session of occupational therapy, which we have found to be extremely helpful for her, because the occupational therapy balances her--it gets her engine, as they say, running in a good state where she’s alert. And when she is in that state, where her system is working fine, the language just seems to really come out. And so, we have--we’ve stumbled upon this technique for her, where we will work on speech right after occupational therapy. She’s already organized with her system and now she, you know, she’s ready for doing articulation and grammar exercises and things like that. Because she’s in elementary school and--her language is coming, but it’s--we still have a long ways to go, and her socialization is just starting to peak, so she’s probably emotionally around four years old, five years old in terms of her socialization. I have--I’m having an hour of speech therapy--also given by the same therapist who works with her in the clinic at the school environment--to teach her games, because those are where the kids are--and in her class--I still have her in a special day class. She is learning how to take turns and, you know, do those kinds of things with a speech therapist involved and learn about social stories and how to behave appropriately at school in--in those kinds of situations. And she also receives one hour of occupational therapy in the school environment as well, to work her fine motor, her writing, and those kinds of things.
Faye: And does your daughter have health insurance that covers the therapy she receives in the clinic setting?
Lisa: No. No--well, what’s happened, at least with my plan in the state of California, is last year they made some radical changes in finally accepting autism under their "mental health" umbrella. When my daughter was diagnosed in 1996, that didn’t exist. And so I had to go to our State Regional Center, because she was under three years of age when we finally got the diagnosis, and so they were able to kind of give her some early intervention. In fact, they sent us to the clinic ,Pediatric Therapy Network, for the occupational therapy evaluation and the speech evaluation. And then--we live in the city of Torrance. And in Torrance we have an early intervention preschool program to address these issues with these children. And so she went--because she was almost three years old--into the program upon her diagnosis. And then the State of California, through the school district, picked up the expenses of speech and occupational therapy.
Faye: Both for the school-based and for the clinic-based therapy?
Lisa: I fought for the clinic-based.
Faye: Okay.
Lisa: I--what I did try to do--since this new law has passed in the year 2000--and of course, my daughter was seven years old, so this was just last year--basically what they want me to do is use their people--and we’ve already been set within our, you know, we’ve had the same people that we’ve been working with for five years, for the most part, or the environment has been consistent and the type of treatment given has been consistent--they wanted me to go through the whole process of having her re-diagnosed, which was laughable, because it’s very evident that she has autism. And--but they wanted us to get into their program. And when I asked them the specifics of, you know, what benefits are we going to receive by going through this whole process again, even though we know what we’re doing, I wasn’t really impressed with their answer of, "Well, this is what we do."
Faye: Now let me back up for a minute. You were saying that the change was because of health coverage for employees of the State of California, or is it a state law that covers all insurance plans?
Lisa: Zoë, you can correct me if I’m wrong. I believe it was --
Zoë: I thought it was maybe at the federal level, or--was it a State change? --there was some kind of legislation that impacted the coverage of autism--
Lisa: Yes.
Zoë: --and the inclusion of autism could--that it could no longer excluded. Which had been the case previously, that as a diagnosis it was specifically excluded.
Faye: And who was it excluded by?
Zoë: Insurance plans.
Faye: By private insurance plans?
Zoë: Yes. And so where this change, I--I’m not really sure if the legislative change was a federal or a state.
Faye: Now, that would have been a state-level change.
Lisa: Okay, then that was it. But in my case, when, in 1996 when we were getting a diagnosis, the only need I had for my insurance was to get the door open in order for me to get into the Regional Center. They needed a note from the pediatrician saying I, you know, we have concerns. And I, you know, I literally begged my pediatrician, I said, you know, this is not right. I need you to right the note. I need to get to the next level. Because I wasn’t satisfied with the let’s-wait-and-see attitude which, you know, depending on the level of autism, if you’ve got a high functioning child, sometimes they don’t diagnosed until they’re five, six years old. And at that point, you’ve lost a lot of early intervention. And early intervention has been critical in the case of my daughter. You know, the developmental psychologist basically told me, you know, lots of luck, don’t expect very much. You know, she’s going to be living with you the rest of her life and she may or may not get language, she may or may not have mental retardation, but, you know, just love her and you know, be a good parent. And the reality is, is through the--and she had intense occupational therapy and speech therapy, you know, in those early years, or I was going to the clinic every day. I truly think it paid off because she does have language, she is speaking, she is average to above average intelligence, and she has the world at her feet in terms of abilities to work and do things. And, of course, it will structured, and of course it will be not the way most people do it, but she does have the ability to learn and to, you know, produce.
Zoë: One thing as far as coverage that we might mention is that autism is an eligibility category under the special education laws, and those are federal laws related to which children would be eligible for receiving special services through their school districts and--on the autism disorder is one of the specific eligibility categories.
Faye: Zoë, could you tell us a little bit more about some of the issues and concerns that are related to occupational therapy and health insurance coverage for children with autism?
Zoë: I think probably the biggest challenge is that many insurance plans now cover occupational therapy for disorders that are acute or traumatic kinds of, you know, injuries or illnesses that come suddenly and have a short phase. Chronic disability seems to be covered less and less by insurance plans, regardless of whether it’s childhood or, you know, something that occurs in--as an adult, like, say, a stroke. When I was first working as an occupational therapist in rehabilitation, people who had had a stroke would be eligible under their insurance plans to receive many, many months, sometimes years, of therapy and rehabilitation. And my impression is that the coverage is much more shortened in comparison. And that for children who have chronic disabilities, developmental disabilities like autism or cerebral palsy or other conditions that will be ongoing, there tends to be very limited coverage--a certain number of treatments per year and a certain number of treatments possibly, you know, for the lifetime, which is very limited in terms of the needs of most of the children.
Faye: And why do you think this change is occurring?
Zoë: Well, it seems to have been occurring with the changes related to managed care. A big effort to, you know, I guess, control costs and kind of get healthcare under some kind of control, but the impact has been that there’s much less service available under health plans for these kinds of difficulties.
Faye: Now, could you also tell us a little bit about the American Occupational Therapy Association; its involvement with health insurance coverage for OT services?
Zoë: Well, I believe that the American Occupational Therapy Association is quite involved. There is a full time lobbyist --and many people--many staff members in their practice department that spend quite a bit of time monitoring both private insurance companies as well as legislation that would be related to healthcare coverage. And they try to be very active in representing the, you know, consumers of these services.
Faye: And just to let our audience know, we will have a link in the resource section of this webcast to the American Occupational Therapy Association and their specific information on insurance, as well as a link to the Pediatric Therapy Network in California and many national resources on autism. And what would you suggest to a family who’s looking for an occupational therapist who could provide therapy for their child with autism?
Zoë: If their child is over age three, then probably the best place to start would be with their school district. Because once the child is three, again, with this condition, this--if they have this diagnosis, they would specifically be eligible for special education. And the eligibility opens the door to kind of a myriad of possible services as well as educational programs. If they are under three, there probably is either a state program in California, it’s through the State Regional Center system, or a county program that would be--or an early intervention-type of program. Families could also contact local hospitals where there is a rehabilitation center and talk to the occupational therapy department at the hospital to see if those therapists would have further resources.
Faye: And could you tell us now a little bit about the model that you have developed at the pediatric therapy network and how you operate?
Zoë: Sure. We’re a fairly large nonprofit organization for children with developmental disabilities. We serve about 850 children and their families. And we have occupational, physical and speech therapists. We do have an early intervention program that’s for children 18 months to three years of age in which all the therapies participate--occupational, physical and speech therapy, as well as teachers. And then once children are three--once they’ve turned three years of age, they are usually in educational programs. So at that point we provide therapy both at school sites as well as in a specialized therapy clinic. We’re very fortunate in this area of California that the school districts are very collaborative with the various agencies and organizations that provide services. And many of our children have their therapy funded through the school districts. We also have a newer program that is to develop social skills. It’s called the Buddy Club. And that’s been a very important program, especially for children with a diagnosis of autism. Social skills are a very huge challenge, and this is a program where children practice their social skills. They’re videotaped in group settings and then they watch the videotapes of themselves and talk about how they might try things differently next time to make friends or to be able to get along in different kinds of situations. And that’s really a growing program. I think we have about 100 children on the waiting list for that program.
Faye: Wow, that’s really very unique. So what you’re saying is that your services are arranged on a contractual basis with the child’s school district and the insurance is not involved at your center?
Zoë: We have--about 70 percent of our children are funded by school districts. Our younger children are funded by the state Regional Centers. We have a few children funded through a county agency. And then we have a small percent who pay privately. We do not bill insurance directly because when we did try to do that, we had so much difficulty with coverage and reimbursement that we have had to require that the families who are coming privately pay us directly, and then they attempt to be reimbursed through their health plans. But it’s not very successful for most of them.
Faye: I see. So that, again, is a model for us to look at. It’s something different.
Zoë: Well, again, specifically with the autism diagnosis, because it is an eligibility category--there’s not a lot of eligibility categories, there’s only about seven--but autism is a specific category through the federal laws related to special education. So that--having that diagnosis in a lot of ways really does open the door to other possibilities. It’s also that way in California of the Regional Center. The Regional Center is set up for children with developmental disabilities who would have cognitive delays, but autism is almost an exception. So that if a child has autism, they are automatically a client to the Regional Center, even if their cognitive level is higher. So it’s important--it is important to get an appropriate and accurate diagnosis. And this diagnosis does bring with it quite a bit of service and resources. And so any parent who has a child with this diagnosis should certainly explore their school district and find out what the programs are available.
Faye: And does your center also accept reimbursement from Medicaid and from the State Children’s Health Insurance program?
Zoë: We have not, because in California, the Medi-Cal program only covers therapy on an outpatient basis if it’s a person who’s not in a hospital--two times a month. And most of our children would receive therapy one to two times a week. So that hasn’t been a practical way for our children to receive their therapy services. And we’re--again, because most children with this diagnosis would have access either to the Regional Center resources or their school district resources, they have been able to have programs in place.
Faye: I see. You have a lot of Medicaid managed care in California?
Zoë: Yes, I believe that we do. It’s not something that we have worked very closely because of these other resources for the families.
Faye: It’s really good that you have other resources for the children.
Zoë: Uh-huh. There is a large Medi-Cal program in California that’s under the Medicaid umbrella.
Faye: Would a child who has autism and is covered by Medi-Cal be able to access the services of your program through their school district?
Zoë: Yes. Uh-huh. They would be eligible through their school district for services because of their diagnosis.
Faye: Now, Lisa, have you ever attempted to have any of your daughter’s services, you know, related to treatment for autism, covered by her health insurance?
Lisa: Well, like I said, last year when we became aware that they had now included autism spectrum under the umbrella of our insurance, we pursued it. And what we found, basically, was that they wanted us to give up everything that we had existing, to go with their stuff, and it just didn’t make sense. You know, we have gotten into the groove. We have created relationships with our therapist, and, you know, we are very happy with what we’ve been receiving. And because, as Zoë said, we have these resources from the State. I don’t have anything from the Regional Center anymore, after a child, you know, becomes three, then the Regional Center hands it off to the school district in this area. So the school district is now responsible for this type of--for the services and providing the services. So should she get additional speech, which was something that I had wanted to pursue, I just wasn’t satisfied with the quality of therapist that they were providing me, considering where I was already getting the speech services. And they would want me to take her out at strange hours that would conflict with her school schedule, so it just didn’t make sense for us to do that.
Faye: I see. What has the insurance experience been generally, beyond the treatment for autism-related services?
Zoë: Our experience is that it’s been pretty similar. That sometimes if a child has a diagnosis that is more commonly understood as a medical condition, like cerebral palsy or spina bifida, they seem to have a better chance of getting some coverage. But a developmental disability, if the child, you know, doesn’t have a specific diagnosis other than being developmentally delayed or a condition like autism, certainly diagnosis such as learning disabilities or attention deficit disorders would be very difficult to have, again, insurance coverage for the therapies that are needed for those problems.
Faye: It sounds really very complicated.
Zoë: Our experience has been that insurance is very complicated.
Lisa: Zoë, I thought maybe you would have a better explanation for me, because I’m just the simple parent who gets the runaround from--
Zoë: In fact, we have had children referred to us by insurance plans , we’ve been contacted by a plan asking if we could provide service and asking us to go through their process of becoming a provider for a specific child. And even in those situations, then still not been reimbursed and still had to, you know, later find out that there were additional mechanisms that we had to use in order to be reimbursed. And that was why we had to stop doing direct billing, because it really would take full-time personnel to manage that; it wasn’t something that we felt that we could handle.
Faye: And what about the Title V Children with Special Health Care Needs program in California? Does it cover therapy services? And does it or does it not cover autism?
Zoë: I have not had experience with it. So I think that because the educational services are so comprehensive for children with autism that usually services are kind of centralized and, you know, through the educational programs.
Faye: I know every state is unique and different in this country and there are many different ways of approaching it, but it looks like you have found, you know, a creative way to address the issue.
Zoë: I have--I do teach around the country and I know when I travel to other parts of the country that at least therapists seem to feel that we have a pretty comprehensive and, you know, a very good program for children that doesn’t always seem to be in place in other parts of the country. And I think that our school systems have really worked hard to try to develop programs that are comprehensive and that include the important therapies for these kinds of diagnoses.
Lisa: You know, it’s also important to state too that Zoë and the people who are involved with the school district, and parents will all get together and collaborate and have meetings because communication is really the key. And Zoë and I have been to these autism meetings in the past. Remember, Zoë, that there was that autism leadership meeting where, when all of a sudden we realized the rise of autism--probably in about 1998--all of a sudden there was just this huge surge of cases. And the district took it upon themselves to get the clinic involved, to get parents involved to try and, you know, discuss what’s going on and how we can all work together, because this is a situation that isn’t going to go away and we need to be prepared for how to handle the caseload as they come.
Faye: Well, I’m really pleased to hear about this kind of interaction and problem solving, because I hear from many families about the difficulties that they have in accessing services. Now, another question, I’ve also heard about some very intensive, almost full-time treatments for autism that some families wish to enroll their children in. Is that something that you do in your clinic, or is it something that’s available through the school system?
Zoë: Uh-oh!
Lisa: You want to take that one?
Zoë: Well, I’ll try to be diplomatic. There is--as I mentioned early on, there is usually some need for some behavioral component. There has been a proliferation of very intensive behavioral programs for children with autism. As we said, many are up to 40 hours per week. I would have to say that our organization, that we use intervention frameworks that are very much based in looking at brain function and how a child is developing and what normal development would be. Our concern about these programs is that children with autism, one of the things they really have difficulty with is figuring out how to do something that’s novel or new--figuring out how to initiate, how to get started with something. And we’re concerned that these very intensive behavior programs, as opposed to working on those areas, in some ways feed into them because they provide very rote kind of training and drills. What happens is that the children do--are able to develop very specific responses to the drills, but what we tend to see is that as time goes on, the children--many of the children are very prompt dependent; they need another adult in a situation with them in order to engage, and they’re not able to access their initiation or ability to do something on their own. So our particular organization actually is very concerned about these kinds of programs. And as we see the children developing we see what happens to many of them that--we feel that it in some ways is contrary to what we know about is--what’s happening in the brain in people who have the autistic disorder. So it is not something that we provide. The school districts are being asked to pay for these programs, sometimes instead of a child attending the educational programs that are in place. And this has been--there has been a lot of concern, tension, some hostility around this. The schools--again, in our area--the schools have worked very hard to put together comprehensive programs. And when a family is asking to have in its place a one-on-one behavior program, often in their home, 40 hours a week, you can imagine that’s a very expensive proposition for a school district, especially when they have already funded what they feel is a very appropriate educational program that includes many components. That’s probably one of the biggest controversies right now in autism and is causing a lot of, kind of, splintering and tension between parent groups, educational groups, and agencies that provide various kinds of services.
Faye: I see.
Zoë: I don’t know. Lisa, do you want to maybe mention your experience?
Lisa: Well, yeah. Yeah. These programs have their place, like everything else. My daughter is--would be considered moderate to mild autism. And she is in the second grade, going to school six hours a day, in a special day classroom with opportunities for some inclusion in the areas where she is strongest. She is also receiving, as I shared with you, two hours of speech therapy a week and two hours of OT a week, in different places. To put her through a 40 hour a week program would max her out. She’s already coming home tired because she has to keep it together an entire day. It would be asking an adult to work an 85-hour workweek, you know. And unfortunately--I talk to a lot of parent groups; some people like me, some people aren’t real happy with my message which is, you know, when a child is maxed out, it doesn’t matter how many hours additional you throw on that kid, it isn’t going to change the reality that your child has a disability. And that, I think, unfortunately, you know, everybody needs to accept the diagnosis or accept the child and love the child for who the child is. But sometimes with these programs, and I know many parents who do this type of thing, they want the behaviors to go away completely, so they feel that it is a time issue; that if they put more time into changing the behavior, that the problem will go away. And I really think it’s a backwards way of looking at it. I think that there are definite benefits to behavior therapy. We have participated in some behavioral therapy, certainly not at 40 hours a week, but we have had a behaviorist come to our home, in the past and, as he once put it, teach, you know, we have a French child and he is teaching us how to speak French. You know, to give us strategies. But never have we sat her at a table and cranked out, you know, information from her, because I see these children withdraw. I have seen a case in a classroom right now where a child is in a wrong placement, number one, but then is also pulled out for this type of a program, so he’s missing academic time because he’s in this program. And I have witnessed this child come out of the session and about ready to pass out because he’s so fatigued. And now he’s got three more hours of school to maintain. And oftentimes, you’ll see behavioral problems erupt immediately in the classroom environment. So now this child has been labeled as a problem case because this kid is maxed out, may not have the language to defend himself or to say, "I’m tired, I can’t do this anymore," and then the teacher, the regular teacher looks at the child and says, "Okay, this kid is constantly screaming." And it’s just very sad to me that, you know, the main thing we need to do is accept the children for who they are. And then you know, take their temperature, see where they’re at, in terms of how much they can handle. And I don’t think it’s the quantity of time that they do it; it’s the quality of time that you put these programs. You can get as much effectiveness in a behavioral program of 12 hours that when a child is there and ready to roll, as opposed to sitting a child 40 hours a week because from this time to this time we need to do this and to see the maximization of it. I just disagree with the whole concept.
Faye: What would you say are some future directions in the area of treatment for children with autism?
Zoë: Well, as far as I can see, there is really a huge burgeoning research body in the narrow biology of autism. Really understanding brain function, MRI studies, autopsy studies are really beginning to pinpoint where the problem is in autism. I think more research dollars have been directed to looking at the cause of autism. So as that is better understood, then treatments will be able to be developed more effectively. There probably will be some kind of medication treatments that will develop and you know, eventually, possibly neurosurgery kinds of treatments would be, you know, in the future. But again, the early intervention therapies that work on functional skills and really helping the children to participate socially, to function in their developmentally appropriate settings, social and educational settings are really critical and those are also developing and being researched all the time.
Faye: Well, thank you, Zoë. Now we’re getting ready to end our webcast, so I’d like to close with the question for each of you, if you could give us some advice that you would like to share with families who have children with autism regarding health insurance. Lisa, would you like to go first?
Lisa: Sure. You know, I thought long and hard about that because I’m still in that process myself about what to do. I think the most important thing is when families find out that they are able to get coverage for their child with autism, you know, it’s important to, for example regarding a behaviorist, to make sure that the behavioral therapy that the plan is offering is an appropriate fit for your child. There’s a lot of different types of behavioral plans out there. There’s a lot of different types of techniques in working with children. I would be very, you know, clear and also to research what the plan is offering and to make sure that it’s an appropriate fit for the child. Just because the plan covers it, doesn’t necessary mean that you should take it, you know, that there’s some research that you can do with that. So that would probably be the thing I’d like to send out to parents.
Faye: And what recommendations do you have about good ways for the families to get needed information to help them decide?
Lisa: Well, of course if there’s Regional Centers or if there’s clinic based environments that they can go to to ask questions of, the Internet is--I’ve been confused, I’ve gotten a lot of different types of information. That’s a real good question. I don’t even know if I can really honestly answer that in a way that would be something that you would, you know, would gain from. I feel lucky that I have been able to go to people within where I’m living and ask specific questions and if I don’t have the answers, I’ve been able to call at UCLA. They have a neuropsychiatric institute maybe within--there’s a hospital with a neuropsychiatric department that maybe a head could speak to a parent and kind of give them some information if they aren’t able to get it through school district or through Regional Center.
Faye: And Zoë?
Zoë: Well, I would suggest that a family really think hard about their primary care physician, their pediatrician. They think there’s a pretty big range in understanding of autism among physicians and there are more and more pediatricians who do have experience with this diagnosis. So since the physician is often the key to the insurance plan and connecting with other resources, that seems like that would be an important thing to explore what their options are in finding the right doctor to work with for their child. And then the other thing would be to be aware that there are resources outside of the insurance plan and to really make sure that they’re aware of what’s available in their community, through their school district and other aid funding agencies.
Faye: And again, we will have on our website links to organizations, like the American Academy of Pediatrics, the administration on developmental disabilities, the arc, other resources where you can get links to both national and state level resources for developmental disabilities. Well, I want to thank you both. This has been a very enlightening discussion and it’s really been a pleasure to do the webcast with you, talking about children with autism and health insurance. I’m really grateful that you were able to make the time to share your expertise with us and I want to thank you.
Lisa: Thank you very much.
Zoë: Thank you, Faye; it’s been a pleasure.
Faye: And thanks for logging on to our webcast production. We’re really interested in your comments and questions about the webcast and we invite you to contact us. Our email address is cad@uic.edu. Our Internet address is www.uic.edu/sph/cade/kidsmco. Our telephone number is area code 312-996-2233 and our fax number is 312-413-0367. We are located in Chicago, Illinois and we’re on central time. We hope that you have enjoyed this broadcast and that you will join us for upcoming broadcast. They’re scheduled for the fourth Wednesday of each month at 1:30 pm central time. Please take note that once we have aired webcast for the first time, they are then archived on our web site and you can access them at any time day or night. Thank you for joining us. Well, you both did a great job.
End of interview