Dental Difficulties, the Autism Tax, the Affordable Care Act, and California's Autism Health Insurance Mandate (SB 946)

Arrgh! Yesterday I had a very frustrating morning taking Singularity to the dentist for teeth cleaning. The plan was for him to wear a mask over his nose and receive nitrous oxide, and then for the staff to clean and polish his teeth. At first things seemed to be going well, but then he was no longer able to tolerate the mask. He insisted that it smelled bad, and he wouldn't put it back on. He also wouldn't open his mouth for the dental assistant or the dentist. And as I have no interest in traumatizing my child, that was that. 

The dentist recommended, based on the most recent X-rays [more on this later] showing cavities and Singularity's difficulty in submitting to cleaning in the office, that we proceed to Plan B, which is putting Singularity under general anesthesia and treating everything all at once, rather than trying to use just nitrous oxide. 

Thus, I was handed an estimate of $1,441 (palindrome!) just for the dental part of the procedure. Not counting the anesthesia, which is presumably the more expensive component. 

Singularity has had dental work under anesthesia once before, about two years ago. It was very expensive. Like $3,000, ask-a-lot-of-questions-before-proceeding expensive. 

As with most things, there is a back-story that contributed to my frustration, which has to do with autism, Singularity's regular dentist, our health insurer, and the Affordable Care Act (ACA). Here is an approximate timeline:

2012: Singularity has dental work done under anesthesia in his regular dentist's office. An anesthesiologist from Children's Hospital in Oakland is on-site. It costs more than $3,000. 

May 2014: Singularity goes in for X-rays and cleaning at his regular dentist's office. He can't tolerate the bite wings, but they are able to do a panoramic X-ray. The dentist tells me that Singularity has cavities that should be filled. 

July 2014: Singularity goes to his pediatrician for a well-child checkup. We mention the dental situation to the pediatrician, who mentions that our insurer covers the medical part of dental care under anesthesia and that the Affordable Care Act includes dental care for children. Our pediatrician connects us with a case manager at our insurer. Our case manager refers us to a dentist who is not in our health insurer's network, but to whom they refer cases where dental work under anesthesia is indicated. 

August 2014: We go to see the new dentist. X-rays are emailed to the new dentist, who looks at them and tells me that he doesn't see the supposed cavities, but that we should come back for a tooth cleaning. 

September 23, 2014, 9:30am: We return to the new dentist's office for the cleaning. Singularity isn't able to tolerate the nitrous oxide mask. The dentist pulls me aside and shows me X-rays again, saying that more X-rays were sent from the original dentist's office. These new images show that there is, indeed, tooth decay, so the dentist recommends that the cleaning and filling take place under general anesthesia. The estimate for his part of the work is over $1,400, which is not covered by our health insurer, as he is out of their network. At this point, I am thinking something along these lines: WTF, why can't we get this seamlessly covered through our health insurer?

September 23, 2014, 11:00am: I receive a call from the new dentist's office telling me that there had been a snafu (I would like to add some emphasis to the FU part of that old military acronym) with the X-rays that had been sent from the original dentist's office, and that they have finally agreed on the timeline. The tooth decay that showed on the X-rays was from prior to the 2012 cavity filling. The most recent X-rays do NOT show any new decay, so that the new dentist is now recommending that we simply return to the original dentist, "in a more familiar environment," for a thorough cleaning. 

Which brings me back to my "arrgh" from the beginning of this post. 

The snafu with the X-rays has no direct connection to autism. That could have happened to anyone. However, the only reason we were dealing with the second dentist was that Singularity's sensory profile (that is, an aspect of his autism) puts him outside the realm of (arguably) affordable dentistry. 

So what we really have here is an autism tax. When I say "autism tax" I mean a whole range of extra fees that parents have to pay that are directly related to their child's autism, that parents of "typical" children don't have to pay. If it weren't for Singularity's autism, "the system" would have known how to handle his dental needs. We wouldn't have had to make 4 visits (counting the future one to the old dentist's office for another attempt at cleaning) to various dentists' offices. We could have stuck with one familiar dentist. We wouldn't be paying for all of these dental visits. We wouldn't have been wasting all of our time shuttling Singularity around to various dental offices. And really, folks, autism parents are already burdened by supervising and transporting our children to all of the various forms of therapy that they receive (and those services are, again, pieced together from things covered by health insurance and things that we have to pay for out of pocket). 

As it is, I don't really know which of these clowns dentists to trust and think that the best thing to do might be to get a third opinion. For which we would have to pay! Unless we can find a dentist who is covered by Singularity's medical insurance under the Affordable Care Act . We will be contacting our case manager to find a dentist whose services (all of whose services) are covered by Singularity's medical insurance, so that we can avoid any kind of split-coverage issues when a similar situation inevitably arises in the future. 

I want to mention that I do recognize that many of these issues also apply to people with a variety of conditions. A person with epilepsy or a heart problem or cancer or whatever, depending on their medical insurance, may spend a lot of money on medical treatments and lose time during which they could be simply living their life in order to deal with their medical condition. And it may ruin them financially. 

There is a bizarre attitude among some people in the United States that it is some kind of a moral failure to be born autistic, with a heart defect, with the wrong number of chromosomes, etc. Unfortunately, many people with this attitude are powerful, and as a result people can be punished for this supposed moral failure by being bankrupted by the medical system. 

Which brings me back to the Affordable Care Act. My politics place me in the "single payer" camp, and while the ACA is less than a single-payer system, it is at least somewhat of a shield for people with pre-existing conditions. And as an autism parent I am thankful that this act has become law, so that our family has a hedge against the autism tax. 

We are fortunate to live in California, where some really dedicated parent advocates at the Autism Health Insurance Project (AHIP) were instrumental in passing the state's Autism Health Insurance Mandate (SB 946). This bill was sponsored by state Senator Darrell Steinberg, who is quoted on AHIP's website as saying, "I vividly recall parents who had to mortgage their homes in order to pay for treatments. To me, that was unacceptable and SB 946, the Autism Insurance Mandate, was the only remedy." 

This mandate defines behavioral health treatments, such as ABA (applied behavior analysis), as medically necessary and requires health insurance companies regulated by the state of California to provide these services. As a result of SB 946, we were able to stop self-funding Singularity's ABA program. We went from a program that we would have had to pay approximately $30,000 a year (yup, that's five digits) to a program for which we pay a co-payment for every service, up to our out-of-pocket maximum, which we reach after approximately halfway through the year. There are also provisions for families who can't cover the co-payment to be covered by California's Regional Center system. 

As an autism parent, I am thankful for all of the activism that brought us the ACA and SB 946.