Autism and Public Policies – Interview with Stewart Spielman

Out guest is Stuart Spielman, a counsel with Autism Speaks, and he is actively involved with their effort to promote policies related to autism. He kindly agreed to talk to our magazine on October 1st, 2012.

MR. SHENGAOUT: Peter Bell (Executive VP of Autism Speaks) told in his report to the Interagency Autism Coordinating Committee (Transcript of the meeting on July 10, 2012, see page 283) that the Affordable Care Act (see section 1302 on page 164 for “Essential Health benefits Requirements”)includes provisions for the behavioral therapies. As most parents with kids with autism know, this is what works the best. If no diet has worked, if other biomedical therapies haven’t worked, this actually may get your kid at least half way down to the finish line. In that report to this committee, he has mentioned that the guidance (for these provisions) which has been given thus far “has been somewhat challenging and troubling and not terribly clear”. My first question is: Who would issue the guidance to the state for this behavioral provision, and what can we expect?

MR. SPIELMAN: Well, let’s start with what the guidance is. The Affordable Care Act was enacted into law by Congress, and the Department of Health and Human Services is responsible for implementing the provisions of the Affordable Care Act. So the answer to your question would be the Department of Health and Human Services. Now, they have put out informal guidance so far, and that guidance allows considerable discretion in the states in how the states set up health care exchanges. So the primary obligation here, responsibility here, is with the Department of Health and Human Services. They are the ones who are charged with providing information and guidance on the implementation of the Affordable Care Act. The states have a significant role but HHS is the primary Federal Agency.

MR. SHENGAOUT: So we may look at the states and laws on behavioral therapies and gauge what kind of benefit is children with autism are expected to receive? A commonly quoted number that would make the difference is thirty hours a week of ABA or similar behavioral therapy. Would you give some feedback as to what type of coverage generally exists across the states where behavioral therapy is part of medical insurance coverage?

MR. SPIELMAN: I can say that there are thirty-two states that provide significant coverage for Applied Behavior Analysis as well as other autism therapies. There are some state laws that vary somewhat in coverage. Some states have unlimited coverage. Some states impose some limitations, but I think all the laws have in common are recognition that the healthcare needs of individuals with autism are important and need to be met.

MR. SHENGAOUT: So most of the laws that you have seen do approach, at least, this magical number, thirty hours? Is that a fair statement?

MR. SPIELMAN: Well, they’re not framed. None of the laws that I am familiar with is framed in terms of child gets X number of hours a week. The way that some of these laws are framed is in terms of dollar limitations and other limitations on services such as the age of the child. If you were going to characterize these laws in a very broad general way, you would say that the laws represent an acknowledgement by states around the country that there are significant healthcare needs for children with autism, and that behavioral health treatment, ABA specifically, is very, very important to many of these kids.

MR. SHENGAOUT: I saw your report to the Institute of Medicine back a year and a half ago. What’s the cost to society? What will be the cost of this coverage of behavioral therapy? What is the cost/benefit analysis of this? We know the moral side of this issue. Kids have to be as healthy as they can be, but if we look purely from the financial point of view, what is the situation here?

MR. SPIELMAN: Well, actually, I think you’re raising an important issue here, and that is, how do you measure cost? I am in a car dealership now, so I apologize for the background noise. Let me use a car analogy. I, in fact, am here to get an oil change for my car, and there is a price for the oil change, and it does cost money. It’s not free, but another way of looking at that is, what’s the value of the expenditure? And there are certain costs that are associated with not changing the oil, with not taking proper care of the car. And those costs, in fact, may be far greater than the costs of actually doing a relatively inexpensive service. I think that analogy is actually apt here for kids with autism. If you provide the care, the cost is low in absolute terms, but especially in relative terms. Kids with autism have significant healthcare issues. If those issues are not addressed early, then it’s not as if the kids will magically get better. The kid’s needs may get greater, so I would say that, in both an absolute and especially in a relative term, these costs are very, very inexpensive.

MR. SHENGAOUTS: So we’re talking about the fact that, even from a financial standpoint, just to continue the car analogy, if you don’t change the oil for twelve thousand miles, you will end up with a hole in your engine. In a similar way, the cost of not treating autism and not developing the child at least to the point where he or she is self-sufficient would result in lifelong need for lodging and other care that, in many cases, does fall not only to the parents, but also, at some point, to society.

MR. SPIELMAN: There have been a couple of studies that are done and have been done about lifetime costs, and one is by Michael Ganz from Harvard University. There was another study that you can see on our website—

MR. SHENGAOUT: David Mandell, University of Pennsylvania.

MR. SPIELMAN: …where the findings at this point are preliminary, but in both the Ganz study and the study that you mentioned (University of Pennsylvania, David Mandell), what we see are very significant lifetime costs. And you know the costs can be framed in terms of lost opportunity as well as actual expenditures. You know costs to look after someone who has a disability, as well as the loss in terms of what that individual may be able to accomplish in terms of working, paying taxes—and these are very significant expenses. So I think that one of the actuarial issues that comes up is that often costs are framed in a way that I think isn’t the most helpful way. The absolute cost of autism care is low; it’s the relative care that we should be thinking about. Children with autism live long lives and the cost of disability over seventy years is great. If we can address these issues early on, if we can change the trajectory of kids, if we can take a kid who might otherwise go to special education and put that kid in regular education or have any other fundamental change like this, then we really are making the soundest of investments possible. I am putting aside for the moment the humanistic issues here, which of course are great, and I also haven’t even mentioned the ancillary effects of providing care, because children are members of families, and the lives of family members who have to deal with the disability of a child are affected, their economic potential is affected. So, it is, I would say, the soundest of investments. This is where the car analogy fails, because you as an individual are really not affected by whether my car is properly serviced. But in a sense, and in a very real way, you’re affected if my child or some other child doesn’t receive the care he or she needs. We all share a community, whether community is defined locally or more broadly. We all are part of society, so it’s really important to get these kids care—and get these kids care as soon as possible.

MR. SHENGAOUT: I am painfully aware of all those things, having a child with autism myself, non-verbal at seven years old. I also could see what a difference the behavioral therapy has made. We literally have run out of our retirement savings, and we cannot continue it. It even occurred to me that there was a fitting expression from Reagan years that I heard, which was the “trickle-down effect”, that once this thing would be addressed, then the trickle-down financial effect would last for decades to come.

MR. SPIELMAN: Well, you know our children are going to be part of society. The question is, what part of society will they be a part of? Will they be part of the workforce? Will they be shunted into a type of life where their potential isn’t fully realized? It is not a question of whether or not kids will grow into adulthood and be part of the greater society. It’s a question of where they are going to wind up and so, again, I can never overstate the human part of this condition.

MR. SHENGAOUT: Yes.

MR. SPIELMAN: But even if one were to be rather detached from this, this is a very expensive condition, and to reach kids at the earliest possible moment is a sound strategy. So I feel very strongly about this.

MR. SHENGAOUT: That makes two of us. I have another question. A couple of years ago, there was declared a “war on Alzheimer’s, and there was set a goal of resolving this condition, coming up with treatment for this condition by year 2025. Correspondingly, there was investment from the top into the research and similar type of actions. I was wondering, how does Alzheimer research funding correlate with autism research funding from CARA (Combating Autism Reauthorization Act of 2011), and can we expect an increase in autism research, considering that autism is pandemic now?

MR. SPIELMAN: Well, Autism Speaks has argued for the need for increased investment in autism research. It’s interesting you mention Alzheimer’s, because Alzheimer’s is a brain condition, and autism is a condition that affects the brain as well. We think that more research needs to be done on brain conditions, and we really think there is a tremendous opportunity with autism and a great need for investment. So I’ll even tell you that these are tough economic times and that all parts of government are under scrutiny and under some strain, but, consistent with what I said before about investment and payoff, there is a real significant return here on the kind of investment that we can make. Understanding this condition, understanding autism is important for thousands and thousands of children and adults. It also has ancillary benefits, because, again, we’re talking about the brain and understanding what, in some ways, is the most challenging part of the human body, where our knowledge is gaining but, still, we have a long way to go. So, we should be spending more money on research. We have to recognize that a condition that affects one in eighty-eight children (and that’s probably an underestimate) is a condition that deserves a maximum federal effort.

MR. SHENGAOUT: I am curious if the question has ever been framed from the standpoint of economic opportunity. Back in 1991, I remember there was this Telecommunications Act (also called the Al Gore Act) where that Act invested two or three billion dollars into communications infrastructure. Those funds were used for writing the first Internet browser, Mosaic, and, in essence, it created trillions of dollars of revenue; we are not talking about billions here, but trillions, and as a result, it was probably the best money invested by the federal government ever, because I am sure the tax revenues have exceeded the investment many times over. Has it ever been proposed that medicine and medical research is the Internet of the 21st Century, and that investing in it may create and continue the economic growth of the United States, because you have to be in the technological advantage in order to compensate for more expensive labor in this country?

MR. SPIELMAN: I think that some have framed this that way, and there are countering views. Some look at the financial straits that our government is in and look at cutting, while others see opportunities for investment and for generating more economic activity. There is a point when I talk about these things when I feel that the cost discussion frankly makes me a little uncomfortable, because I never really want to stray too far from the humanistic side. And aside from that, I too am a father of a child with autism, I too am a father of a non-verbal child with autism, and there are any number of reasons why more should be done here, but to me the greatest reason is the reason that we provide care for those who need any kind of assistance, and it’s our sense of community. It’s our sense of who we are as people. But I do have to agree that there are real opportunities here. It’s not as if autism is a condition that affects an isolated species of plankton in a tiny little remote part of the world. This is a condition that affects people all over the world, and the technologies that we bring to bear here, the approaches we bring to bear here will create opportunities. There will be people who are providing services. There will be a new effort. It really is a matter of seizing a chance to do the right thing and do the right thing in the broadest way.

MR. SHENGAOUT: I hear you. I do tend to ask lots of questions about the costs, because the moral and humanistic aspect of this [issue] is so clear. But, because we are in this type of an economic situation, I hoped to shed some light on the economic aspect of this problem that no one has looked at, But, from any angle—humanistic, financial—from any point of view, tackling it with everything we’ve got would make the best sense.

MR. SPIELMAN: I think that it should be recognized that there are many reasons why we should do this, and all of us look at things from a little different view point, and sometimes we are forced to look at it from a little different view point. But it’s the right thing to do. I mean it’s just the right thing to do, and any kind of savings that could be realized by spending less are full savings.

MR. SHENGAOUT: You mentioned that your family is stricken by this affliction, and I know that Peter Bell (Executive VP of Autism Speaks) also has a son who has this problem. Michael Strautmanis from that administration also has a son with this problem. It looks like lots of people who are part of Autism Speaks became part of this movement because they are personally affected by this? Would you say that is a correct statement?

MR. SPIELMAN: I think that that’s a correct statement. I think you know that many of our lives took a bit of a turn because of our experience having a child with disability. I think that’s the way it should be. Forgive me for speaking in a philosophical sense here, but our lives should take a turn, and our lives should be integrated, and my personal experience can perhaps inform other people, and it’s appropriate for me to use my experience in a professional manner. If I can do something that helps people become more aware of autism and makes this society a better place for people who are affected by autism, then I’ve done something that is good in the work place. I’ve done something that is good at home. If I can help my child by helping other children with autism, then I think I’ve done two good things, not one good thing.

MR. SHENGAOUT: I understand. If it’s not too personal of a question, do you mind sharing with the readers or our magazine your story, what’s happened and what have you done? I think that might be very helpful to lots of us if you told.

MR. SPIELMAN: I am an attorney and, when my child was diagnosed, I was struck and thinking—what do I do? I’m not a doctor. I can’t go into a laboratory and do some experiments. What do I know? As an attorney I had received certain training in advocacy, and I understood a little bit about public policy, so I tried to set about using the little skill I had for the best effect. So that’s how autism affected me and continues to affect me, because every day I go home to a young man who has autism. It’s my continuing responsibility to help him, but I feel that one way I can help him is to try to help others with autism. This is what I have been trained to do. You with your literary magazine and each of us in our own way affected by autism, we try to take the sum of our experience and channel those experiences into something that is both personal and something that goes beyond the personal. What is the relevance of this story? We would all like to help and do as much as we can for people, so this is a continuing challenge. How do I take my experience and make it useful for someone else? First and foremost, I want to help my son, but how do I make my experiences work for others as well? Can I do that? That’s a wonderful thing if I can do it.

MR. SHENGAOUT: In many ways, you cannot help just one individual. It just has to be broader than that. So you became part of Autism Speaks after this situation happened to you?

MR. SPIELMAN: Well, my child is 18 now, so, yes. Autism Speaks is much younger than 18. but it’s true.

MR. SHENGAOUT: I guess we have similar experience in this sense. Stuart, thank you so much for your time. I wish you luck and thank you for this interview and all the great work you have been doing with Autism Speaks. I thank you, not only as a member of society, but also as the father of a child with autism.

MR. SPIELMAN: Well, thank you, Misha. I appreciate your interest. The one thing that strikes me is, when I talk with fellow dads, it’s always an interesting experience, because it’s a challenge to think about how to fulfill the role of being a father. It’s something that I keep grappling with as I grow older—am I doing the right thing? What’s the right thing? How do you do the right thing? But I think, if we all work together in our own capabilities, we can make this a better place for our children and for other people’s children. And I hope, at some point, some family somewhere is going to find that it’s not a struggle to get services, that the research is being done, and they won’t even think about this. They’ll just think that this happened very easily. I’m hoping that, at some point, there will be families what just sort of think, “oh, this is what happens, it is easy to get services, they just happen” just like the cell phone happened. So good luck to you and good luck to your son, well, good luck to your child and—

MR. SHENGAOUT: It’s a son, yes. When we talk about autism, it’s a very safe assumption to say “son”.

MR. SPIELMAN: It is. It’s a statistically appropriate leap. But good luck to you and your son and thank you for your interest and your perspective on autism and, maybe ten years from now, we can talk again, and we’ll look at autism as something where society met the challenge, and that services are being provided and that we’ve come a long way. Let’s hope so.

MR. SHENGAOUT: Let’s hope.

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