My son has a diagnosis of Asperger’s type, or high functioning, autism. He was diagnosed at around 5 years of age and is a teenager now.
He’s had tons of therapies through about age 12 or 13, including excellent services through the school district until 6th grade, when he was unceremoniously dumped from all SPED programs as the district deemed him ‘academically successful’ that year and informed us he was being dis-enrolled.
The district did offer to let us transfer to the ‘special school’, but we chose not to take this offer as the special school had no extracurricular activities and my son is musically inclined. He liked the idea of never doing homework again, a special feature of this special campus, but we felt he would do better in a normal setting since eventually he will need to get along in the world and not a protected environment. This sudden change surprised us but we went along with it as he did seem to be doing fairly well.
I always though these two options (mainstream v. special campus) seemed at odds with one another, but we just decided to go with it and see how it went.
So he was mainstreamed. And he has struggled mightily every since.
I asked the school to reevaluate him almost a year ago, in November. I asked again in February. They are obligated to reevaluate him every three years as needed and should have replied long ago, but I only just heard from the school recently. I turned in their one page parent screening/questionnaire today, in fact. His last evaluation was 4 or 5 years ago, so it is long overdue.
In February, I also went looking for an independent evaluation. I wanted some place that had no stake in the diagnoses; a place that wasn’t going to either decline to find anything wrong so that they would not have to treat (my fear about the school district’s potential evaluation), or a place that was willing to find something wrong so they could sell me services (almost every other place in my town).
I was willing to drive to another city to find a university based clinic and found a Big Name University center that has a clinic specializing in autism, ADD, learning disabilities and other things of that nature and made an appointment. They also accept insurance, which I have. We have had one short screening visit fairly recently to determine what testing would be appropriate and the (first) big appointment for testing is tomorrow. I was warned that testing could run two days, however.
Today I heard from the clinic that my insurance, which is supposed to cover at a flat 80/20%, has only authorized 2 hours of testing and that I will need to bring cash (or credit cards, no checks) to cover tomorrow’s planned tests.
The doctor that is the head of the clinic estimated my son will need about 11-12 hours of testing to cover all three areas- autism, learning disabilities and ADD. About 2 hours have been done already (which I paid at 80/20%).
I called insurance to complain, and I am being told ‘Well, that’s just the way it’s done. After the testing, you or the university clinic can file an appeal.’
I explained that I have coverage, the services are a covered benefit, I expect the evaluation to be covered, that I, like most people, don’t just happen to have several thousands of dollars lying about under my couch cushions to dig up, and that not covering this visit is a hardship to me.
That did not work.
I asked to start my appeal today and was told the appeal can only begin after clinical notes are received. I asked if coverage was based on test results and was told ‘no.’
This is such bullshit.
As near as I can tell, this ‘pay first’ policy is just designed to make things difficult and to keep me from having the evaluation done.
Why does my insurance get to ignore the doctor’s recommendation? A doctor who is well know, well respected, and a published expert in their field.
My son wants to attend college and get a Masters in a particular and difficult field of study. Many colleges have special programs for kids with autism and I would like him to attend the one or two we currently know about and have visited that have these programs. Those programs are why he is interested in these two places.
(Just so you know, these programs have the kids advocate for themselves, but follow the kids closely. They might call weekly and ask " How’s your room? How’s your roomate? Are you eating? Sleeping? Did you inform your professor of any accommodations you have? Do you need to come to the study center?" Often these programs are also linked with some social activities, too, such as going to a movie or a play, etc. since this a a huge weakness in people with autism spectrum disorders.)
Those programs also require recent (within 4 years) evaluation to qualify. This evaluation would be ideally timed right now to help my son as he attempts to transition to college in two years.
Truthfully, he is not a very good student by normal standards. He studies a lot on his own and with heavy help from his parents and still barely passes. He is chronically disorganized and messy. He is a classic absent-minded professor.
He also needs the evaluation to get back some of the accommodations he lost when he was dumped from SPED so that the can do better in high school increasing his odds of making it into one of those programs he is interested in. Some simple accommodations like a quite room or proctored testing and some additional test time would go a long way to helping him succeed. He’s really bright; has a high IQ, but a very slow processing speed (36% on his last evaluation many years ago).
I (and we) need this evaluation to figure out what is wrong and how to work around the problems, and it’s total BS that the freaking insurance company feels like it can decide what it will cover instead of the expert physician who is seeing him.