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Discussion of Autism in Iowa

posted on May 14, 2009 at 5:41 PM

Paul Yeager: Many, many questions about this topic tonight and here's where we're going to start with a couple of those questions.  What does the future hold for Jack and kids like him?  That's one question we'll ask tonight.  And are there advances being made in the treatment of autism?  How can the public and private sector help?  Here to help us address these questions are two people who have been actively and personally engaged in the fight.  Former Lieutenant Governor Sally Pederson has served as Board President of the Autism Society of Iowa and is Founding President of The Homestead, that's an agency providing innovative services to children and adults with autism.  Lieutenant Governor Pederson has a 25-year-old son who has autism.  And recently she helped establish a college program at the University of Iowa for students with learning and cognitive disabilities called REACH, that's Realizing Educational and Career Hopes.  Also on the program is Dr. Ethel Faust, she practices internal medicine for Iowa Health Systems in Des Moines.  Dr. Faust is the parent of a 14-year-old son with autism.  She is on the board of the Autism Society of Iowa and Co-chair of the annual Walk Now for Autism that helps raise funds for Autism Speaks.  To the two of you, welcome to The Iowa Journal, glad to have you on this subject.

Paul Yeager: I'm just going to start with one of those questions right now, let's talk about Jack and the piece that we just saw.  Dr. Faust, what's the future for kids like him?

Dr. Ethel Faust: I think that what we saw was Jack has really made a lot of progress over the past couple of years and really with the amount of time and effort his parents are putting in to getting him into a variety of therapies he's probably going to continue to make a lot of progress.  There are some children that never learn to speak so it will be interesting to see whether he develops more verbal abilities as time goes on.

Paul Yeager: With your son you were talking just before we came on here about trying to monitor progress or the ways he has grown in his fourteen years, how do you tell someone or try to show someone look at what he's been able to do and express that and also keep in your mind wow, he's really made tremendous progress in his time?

Dr. Ethel Faust: It's hard sometimes because when I tell people about my child he still doesn't have many conversational skills in terms of back and forth conversation but he's one of those kids that had a lot of words early on but they weren't really social words.  Being able to go down the parking lot at Hy-Vee when you're three and name the make and model of every car you see is not really social language development.  But he's just now starting to develop some back and forth conversational skills.  So, even when he catches me off guard and goes into a grocery store now and all of a sudden strikes up a conversation with the cashier that I wasn't expecting him to have, to me that's incredible progress and especially when it's spontaneous and not prompted by me or another adult, then you know he's really made a lot of headway.

Paul Yeager: A lot of headway, that's very interesting.  Lieutenant Governor, let's talk about headway with your son, 25 years.  Do you remember the first 14 with your son and remember the next 9 years?  How have you charted the progress?

Sally Pederson: Well, I was very encouraged to see Jack's progress because when my son was five years old he was just putting two words together.  He was still having a lot of temper tantrums, he was still needing sometimes to have a diaper at school.  So, now at age 25 he drives a car, he's making payments on that car, he's living in an apartment, he is working a part-time job and he has a degree of independence that I could have never anticipated.  So, when I look at Jack I see the opportunity for a lot of good things to happen and I think some of that will be about new treatments that we learn about, a good education program and even some of the pharmaceutical products that can help control Attention Deficit Disorder and anxiety and Obsessive-Compulsive Disorder, all things that can be part of this complex disorder called autism.

Paul Yeager: You hit about four topics that I want to get to but I don't know where to start.  Let's start with some of the early childhood and the diagnosis.  There's such a widespread trying to figure out, yes, this boy or girl has this part or it's such a wide spectrum of things.  How do you, speak from your group's perspective, how do you encourage parents that are having these children that are in this area that you need to go down this road or this road?  There is no clear cut road map.  That's got to be very difficult I would imagine.

Sally Pederson: I think the difficult thing is that this is not a disease, it is a disorder.  We don't really know of any real cures for autism although there has been some recent research that has shown that early intervention can result in young children with autism by the time they are eight or nine no longer having autism and they say there may be 10% to 20% of children with autism who can outgrow it with appropriate intervention.  So, that is hopeful.  But it's a very broad spectrum and because it isn't something that you can do surgery or take a certain pill and be cured, there is no particular fix, parents have to experiment with a lot of different things.  That's why research is so important.  It's really important that we continue to do research because I'm sure that we will unlock the key or keys, many keys to curing what is I think a disorder that has multiple treatment options that can be effective.

Paul Yeager: As a doctor you always are trying to find -- patients are coming to you wanting to know I want a fix for my problem.  It's not a key but it's a piece to the puzzle, that's the autism logo that's on your pin there, how is that when you try to sort out all these possibilities or these fixes that could be down the road for somebody, how frustrating is that from knowing your educational background to what you're trying to deal with at home or for anybody who has an autistic child at home?

Dr. Ethel Faust: I think the problem with autism, first of all, it's in diagnosis.  It's not like you can go to your pediatrician or your family doctor and say I'd like my child to have a blood test for autism.  There isn't really an objective test in that manner.  It really is observation and looking at a number of things that the child may or may not be doing.  So, often times when a family raises concerns they may get very frustrated with their physician because the physician may not know and it may take a little bit of time to decide if the child has early warning signs of autism or not.  But then when you start going down treatment avenues for many of us when our kids were young and were diagnosed with autism it was almost as if they kind of said, yes, I'm sorry they have autism, good luck because there really was not a lot to offer families.  And so, even now I think physicians don't have really good direction.  We know that applied behavioral analysis, which a lot of people call early intervention, intensive therapy, it may include speech therapy, occupational therapy, some physical therapy, getting that on board as early as possible when the child is youngest they tend to have the best outcomes.  There are a number of medications that may or may not work and we really don't understand why one child might respond to one medicine and another child is completely unaffected by that medicine.  That's, again, why research is so very important to look at why are these kids different?  What can we do to help children?  How can we decide other than just kind of, you know, it's like shopping with different pills, you try one for a while, you try another for a while, try one therapy and move onto another therapy, can we determine earlier in the course of a child's development what specifically will help that individual so that we can bypass some of the other stuff maybe the family doesn’t need to experiment with.

Sally Pederson: I think that's one reason why this early investment is so important because it changes the outcome.  Not every child has the same potential whether they have autism or not but we do know that the earlier you can provide these kinds of therapies and interventions the more likely the outcome will be better.  And for some families they can't afford the additional, private speech therapy or occupational therapy or recreational therapy or all the other things that you want to do in order to give the child the best opportunity and that's why either insurance programs or some kind of government program that will come in and provide that is so critical because it will save dollars later.

Paul Yeager: You're reading my notes because that's where I wanted to go next.  Insurance, there's got to be frustration for parents.  I've talked to some that have just said insurance will pay for this but it won't pay for that, it will be a waiver for this but it won't be a waiver for that.  Is there any hope out there that insurance companies are listening and understanding that it takes a strong caregiver on some instances, in other cases that it's not?  Give us some hope out there for folks that are dealing with this.  Either one of you can answer that.

Sally Pederson: I'm going to let Ethel take that because she's been very involved in this in Iowa.

Dr. Ethel Faust: You know, in Iowa we've been trying the work of many other states have actually an insurance mandate because if you look at an individual with autism over their lifetime in direct services they may spend up to five or six million dollars in therapies and care.  And as they become adults they may need 24-hour care, those kinds of things are expensive.  With early intervention, however, you may be able to alter the outcome so that you're looking at one to two million dollars less per person which will save society millions and millions of dollars down the road.  Unfortunately, the long-term gain is sometimes difficult for the insurance industry to get on board with.

Paul Yeager: If we're talking waivers, I should have clarified this earlier, what are we talking about when we say waivers, what the insurance companies are talking about?

Dr. Ethel Faust: The waivers we're talking about Medicaid or state funded services.  With insurance the problem that we've seen is that a lot of kids that try to get Medicaid waivers, those families have insurance, they have good insurance and so really if you want to get the most services for the children and do it in a cost effective manner it really has to be a partnership between the public and the private sector.  So, it's not just everybody getting state funds but if you also are paying insurance premiums the insurance company should be helping you out with some of the therapies.  So, as of today I think ten states have passed insurance mandates requiring private insurance companies to fund early intervention and to fund therapy for these children.

Paul Yeager: Is Iowa one of those ten?

Dr. Ethel Faust: In Iowa we have not yet been successful in passing it.

Paul Yeager: How close are we?

Dr. Ethel Faust: Well, I think if it wasn't an economic situation this year we would have been closer but we'll be bringing it up again next year.

Paul Yeager: Are there obstacles that lawmakers are telling you other than the economy why this isn't passing?

Dr. Ethel Faust: I think there's a lot of concern about if it raises insurance premiums can small businesses still afford to offer their employees health insurance?  And so there's been some concern about people actually going without health insurance if you had too many mandates.  We were looking at trying to partner with the state to cover the cost of any increases for insurance but if you really look at the studies that have been done in Iowa for private insurance to insure these children with autism if it increased your insurance rates it would be equivalent to one Starbucks coffee a month.  We're not talking about a lot of money.  And the impact in the long run economically and just in terms of these children being able to be independent, productive members of society far outweighs any minor increases in the insurance premiums.

Paul Yeager: I want to go to -- can you give Iowa a grade on how they're doing on things?  From your standpoint when you were inside the administration to now on the outside looking in you know how hard it is to move bills through the legislature.  How does Iowa rate?  There's so many factors in this but if you had to give Iowa a grade on how insurance is set up or how the treatment and care, the education system is for Iowa or any of those with autism?

Dr. Sally Pederson: Overall I would give Iowa a very high grade, a B+, maybe even an A as far as the overall services.  That doesn't mean there's not room for improvement but I'm just saying compared to other states because we do have early childhood intervention programs.  Our son was diagnosed very, very early because we have teams of special education professionals who come into your home and will diagnose your child when they are delayed and we had that long before other states did.  Now it's mandated and every state has birth through 21 education programs.  I think we've been kind of ahead of the game by having a statewide autism resource team that is located and coordinated out of the University of Iowa Hospitals and Clinics.  We also now have a program for young people with autism and other multiple learning disabilities for a post-high school education program at the University of Iowa, you mentioned earlier REACH.  Those young people who need further education in order to be able to live more independent lives but they're not really able to do a college program and college curriculum can do this two year program living on campus and learning job skills.  And so I think all of those things comprise a lot of options.  Still, we're very much hoping to get this insurance coverage, expand waiver options and at the national level put more money into research, healthcare reform offers us an opportunity to be sure that families and children and adults with autism are also well covered.

Paul Yeager: I have to give the final 30 seconds to Dr. Faust here.  Where in the next ten years do you think Iowa will be or autism research will be?  Will we be close to finding an idea of what has caused this?

Dr. Ethel Faust: Hopefully.  We keep working on autism research and with Autism Speaks we have a walk every year here in the Des Moines metro area.  June 13th we'll be having our annual walk out at Valley Stadium in West Des Moines.  What we're trying to do is raise a lot of money for autism research and really get to what is causing autism, what can we do to treat it and ultimately find a cure.  I think ultimately we'll do that.  I'm not sure it will be in ten years but we'll make a lot of progress.

Paul Yeager: I appreciate your time.  That's Dr. Ethel Faust, she practices internal medicine for Iowa Healthy Systems in Des Moines.  On the other side of the table tonight was Former Lieutenant Governor Sally Pederson, founding president of The Homestead.  Thank you very much both of you for coming in.  Time absolutely flies and we could always continue this discussion.  We will have to wait for another time.  That's going to wrap us up for tonight. 

Tags: autism children economy education families health health care Iowa schools teachers


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