Dog-Eat-Dog Statism for Special-Needs Families: You’re Either at the Table or You’re on the Menu

By Bretigne Shaffer

I wouldn’t have expected a conference on therapy for children with autism and related disorders to have much to say about politics, but in a country where the state’s tentacles reach into pretty much every aspect of human life, I should have known better.

My daughter is developmentally disabled and I am pursuing more child-centered therapies for her than the more widely recognized ABA (Applied Behavior Analysis) method, so last fall I attended
the DIR Floortime Conference on Floortime, a more play-based form of therapy.

As soon as I walked in, I was struck by two phrases: “Parent Choice” and “Advocacy.” I was pretty sure that “Parent Choice” wasn’t going to mean what I hoped it would mean. So I asked someone who was wearing a big button with the phrase on it, and found that indeed, “Parent Choice” in this context simply refers to having the “choice” to force your insurance company to pay for alternative therapies in addition to the more established ABA method.

The issue revolves around a bill that was passed in 2011, SB 946, that mandates insurance coverage for developmental therapies to treat autism and Autism Spectrum Disorder. However, either due to the way the bill was written or to the way it has been interpreted - and with much thanks to the ABA lobby - the insurance codes only apply to ABA therapy and not to alternatives. So now the DIR/Floortime lobby is rallying to change that. Of course, as someone who doesn’t believe in forcing other people to give me anything, I couldn’t support this kind of “choice”, but I just smiled and moved on.

As it turned out, the guest of honor at the conference’s gala dinner was Dr. Louis Vismara, senior policy consultant to California Senator Darrell Steinberg, the author of SB 946. Dr. Vismara spoke on the first morning of the conference and assured parents that he would work hard to get the problem fixed so that parents could also force their insurance companies to pay for Floortime therapy. There was much applause.

There were other concerns too. Some parents had felt the effects of state budget cuts and had to struggle to get the services they needed for their children. Dr. Vismara sympathized with these concerns and stressed the importance of being active in “advocating” for their children. He said that, in the world of public policy, “you’re either at the table or you’re on the menu.”

He ended his talk by urging parents to get involved in the political process, and to contact his office with any practical proposals. “If a specific problem is identified and there is a solution”, he said, then that solution has a “strong chance” of being implemented.

I had identified a specific problem and had a solution in mind. So at the end of his talk, I went up to him and asked him about it.   

My husband and I are interested in starting a special-needs school based on Montessori or DIR principles. Nothing big, just a little school where our daughter and some of her peers could have an alternative to mainstream special education. But governments put a lot of roadblocks in the way of people doing things like this. Usually you have to get permission from members of your city government, who decide whether there is a “need” for your school in your area. And it is no secret that California is one of the most onerous states for small businesses. My idea was to get the state and local governments to stop interfering with people coming up with their own solutions for special-needs families.

I asked Dr. Vismara whether the Senator Steinberg would be interested in such a proposal, in working to get government out of the way of people creating solutions. He gave me one of those smiles reserved for people who really don’t understand how the game is played, who are neither at the table nor on the menu, but probably somewhere in the kitchen sweeping up. He said, very definitely, “no.” When I asked him why, he said because “it’s a non issue.”

That may seem like a strange thing to say if you know anything about the business environment in California. For years now, there has been an exodus of productivity from the state that consistently ranks as the worst business environment in the country. According to the Los Angeles Times in 2011:

“California's suffocating regulations have a lot to do with this discontent. A 2009 study by two California State University finance professors, Sanjay Varshney and Dennis Tootelian, estimated that regulation cost the state's businesses $493 billion annually, or nearly $135,000 per company. Additionally, dense and complex land-use regulations have driven up housing construction costs in the state, giving residents a double whammy: a stagnant economy and unaffordable home prices, even since the real estate bubble burst.

“Taxes are another burden. According to the Tax Foundation, California imposes the nation's second-heaviest tax burden on businesses, and finance officers of major companies recently rated the state's overall tax environment the worst in the country, according to a poll in CFO magazine.

“On top of taxes and regulation, the state can also claim what may be America's most expensive litigation environment for firms. The American Tort Reform Foundation recently named California one of the country's five worst "judicial hellholes," in part because state law allows trial lawyers to sue firms for minor violations of California's complex labor and environmental regulations.”

But Dr. Vismara was right. In the world in which he operates, the concern about too much government interference in business and other activities is indeed a “non-issue.” Why? Because you don’t win at the game of government by reducing the powers of government. More specifically: If you are a candidate for public office, running against other candidates, you are going to gain more votes and more campaign contributions by giving your constituents what they want. And generally, what people want from their politicians is not “free and open markets” or “unhampered competition.” What they want is special favors for themselves - very often in forms that restrict their competition. Take a look at Senator Steinberg’s top donors and see if you can imagine any of them lobbying for a less restrictive business environment.

And it is a stretch to refer to special-needs education and services as a “business” environment anyway. Much of these services are provided either through local school districts or through state-funded “regional centers” that provide various forms of therapy for families. Even families who send their children to private schools generally do so by “suing” their local school district to pay the inflated tuition of “non-public” special-ed schools.

This is where “advocating” comes in. Over and over I heard about how important it was to “advocate” for your child’s needs. There was an entire panel of parents devoted to the topic. “Advocating” can mean many things. It can mean pressuring your local school district to provide the therapies, tools or other forms of support your child needs to progress; it can mean fighting for legislative changes that force insurance companies to cover the therapy you want; it can mean insisting that your child be placed in a classroom where you feel he or she will benefit the most.

It’s funny, because I don’t have to “advocate” for the groceries I buy, or for clothes or books or furniture. I just go to the store and buy them. But the world of state-provided services is not a marketplace where goods and services are produced in response to consumer demand. It is a very different world, with very different consequences that reach far beyond issues of supply and demand.

One parent expressed these consequences very eloquently. He likened aggressive “advocating” for one’s child to having a LoJack for one’s car.

“A very determined thief is going to steal your car anyway,” he said, “it’s not going to prevent that. But if there are five other cars on the block that don’t have LoJack, most ordinary thieves are going to leave your car alone and go after one of the other cars.”

The parent admitted that this was a harsh way of looking at the world, but insisted that he didn’t really have a choice if he was going to pursue his child’s best interests. You have to be the squeaky wheel, he said. You have to insist - politely of course - and keep insisting, if you’re going to be one of the few who gets what they want. The school district has limited resources to spend on all of the families it serves and if it is going to cut back anywhere, said the parent, he wants it to be on someone else’s child.

You’re either at the table - squeaking loudly - or you’re on the menu.

And in the world of this parent, and the world of Dr. Vismara, that is indeed how things are: Eat or be eaten, be the squeaky wheel or go without. It is a zero-sum world where one person may get ahead only at the expense of another. Contrasted with a world where things are produced in response to consumer demand, and where the more people want something the more of it gets produced, this world brings with it no incentive to produce more goods and services in response to demand. Instead, it pits every consumer against every other consumer in a mad rush for - always - limited resources. I call this environment and the worldview it breeds, “dog-eat-dog statism.”

And in a zero-sum game, yes, I’ll also fight to get my kids what they need at the expense of other people’s children. But what an ugly way to live. What an obscene game for us all to be playing, and what an obscene way for people to have to think about others. This may be the world of politicians, and it is unfortunately largely the world for parents of special-needs children. But it is not the world I want to live in. And it doesn’t have to be. I don’t want to teach my children that they can only gain by someone else losing; that they can only win at the expense of someone else; that other people are just obstacles to their own success. It is not my view of the world, and I don’t want it to be theirs.

The predictable response from those who support the existing system is that there are many people who could not afford to pay for all of these services on their own. And of course that is true. But to leap from this truth to the conclusion that the only way to help these people is through the coercive and stifling mechanism of the state is to ignore a long history of mutual aid and other forms of voluntary support that people have long engaged in to support each other.

The real conflict is not, and should not be, between families of special-needs children vying for limited resources, nor is it between one method of therapy and another. The real conflict in the world of special needs services is between those who would allow markets for these services to function and flourish and those who would stifle them, keeping services scarce under the dominion of the state.

Bretigne Shaffer blogs at On the Banks.