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When my sister, Leslie, was born in 1950 there was no such thing as autism. Back then she was “mentally retarded.” She was born with a few physical defects as well, not major, but you could tell she was different. Leslie played with all of the other kids in the neighborhood and was their relative equal until sixth grade or so when her differences began to become more apparent.

Although Leslie is my only sibling, I grew up mostly as an only child. In her teen years and well into her young adulthood, my parents had Leslie in a variety of special schools.

In her adulthood, Leslie came to live with me. In fact, I’ve been her legal guardian since 1984. She lived with Sally and me and our six kids for 20 years. At one point we set her up in independent living and that worked for a few years until she developed schizophrenia. Today, at 62 years old, she once again lives with us in our home.

My private insurance never allowed Leslie coverage as my dependent. Even when I worked for Congress with its great health coverage, they turned me down when I requested that Leslie be placed on our family policy. Since the day she came to live with us in the early ’80s, Leslie has had all of her medical needs covered by Medicaid in one form or another. In my mind, Leslie is the poster child for why Medicaid exists.

I began by saying that autism didn’t exist in 1950. As autism is now defined and as we look back on Leslie’s life, she very well could be autistic, not retarded in the traditional sense of the word. Of course, that’s tough to say because autism is a spectrum of functional disorders and while Leslie’s IQ is around 70, there are people with autism who are very bright even if not very functional.

Getting medical and clinical assistance for Leslie and others like her has never been cheap. And the questions of hard costs and insurance coverage become very complicated as we move from a catch-all world of “mental retardation” to a rather elaborately nuanced world of mental and functional disabilities such as autism. Even in a diverse population, everyone knew what “retarded” meant. More importantly, insurance companies knew it.

Private insurance companies are reluctant to provide coverage for autism precisely because it’s a spectrum of disabilities ranging from the severely nonfunctional to the wildly hyper-functional. And these insurance companies have a point – if science and medicine have a hard time categorizing these disabilities, why should people expect insurance companies to decisively set clinical definitions as a basis for private care?

Honestly, many reasonable people have a hard time distinguishing between what’s now called ADHD and an undisciplined child. And the fact that this one point alone is so contentious and debatable ought to provide insights into the difficult situation private insurance companies find themselves today. In moments of natural and justified despair over my sister’s personal struggles, my mom would say, “Leslie would have been better off more severely retarded.” I know for a fact that private insurance companies, and even Medicaid officials, would agree. We know what “severely” looks like. We rarely know what to make of “mildly.”

I saw a recent story of a Utah family with an autistic child looking to move out of state because a few other states have mandated to private insurance companies that they cover the entire spectrum of autism. Frankly, these parents feel helpless in Utah. But we ought not blame private insurance companies. Though it is becoming increasingly less so in the age of Obamacare, insurance is a business of risk, not reward. Though I empathize with this family, private insurance isn’t an entitlement program, and when state legislatures act to make them so through mandates, they only act to make these companies disappear.

For Sutherland Institute, I’m Paul Mero. Thanks for listening.

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