Insurance coverage for Autism, Learning Disability and ADD Testing Gripe

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.

So how is that any different from any other medical condition? If anything, what you’re saying is a grayer area than say… not paying for a particular prescription drug that a doctor prescribes because it’s not in the insurance company’s formulary.

There is nothing - NOTHING - the health insurance industry fears more than being forced to pay proper coverage for autism spectrum treatment. Even where they have been forced to do so, they make it as difficult and limited as possible, as in the OP’s case.

Autism is a medical condition, successfully addressed only by medical treatments, and leaving that treatment to the education industry is like taking cancer patients and claiming that teaching them thoroughly about their condition will cure them.

That doesn’t make sense from what I understand. It’s not like there are a bunch of effective drugs or surgeries for autistic children out there. So what we do have is specialized education and associated therapies, and they fall under the purview of the educational system.

The testing at the university is likely considered above and beyond what insurance normally pays for, and that’s why they’re saying no. Had her local doctor referred them, then maybe they might pay. Or if the school district did, then they’d pay. But just deciding on your own that your kid needs more testing isn’t going to get insurance to pay for it. I can’t just wander into a doctor’s office and ask for a cardiac stress test, and then get pissed if my insurance doesn’t want to pay because I’m only 42 and in relatively good shape, and this is no different in the eyes of the insurance company.

The real fumble here was not riding the local school district earlier and more often to have the kid re-evaluated. Leaving off in February and waiting to hear back until September seems kind of… unmotivated to me.

You can’t “educate” an autistic child into a higher level of functionality, and the effective tools for doing so are intensive behavioral therapy, which may not be “medical” in the strictest sense… but then, neither is any other mental health care, but counseling, psychiatry, etc. are considered and covered under medical insurance and oversight. Most ASD children also have other medical issues that are best dealt with concurrently (I’d say “holistically” but I don’t want to be misunderstood), and many problems come from having two or three care providers working to different ends without much communication between them. If the school personnel, the doctor prescribing drugs and the feelgood horseback/PT/art therapy provider don’t talk, none is going to accomplish as much as they should.

There are some good school-based programs. Most, however, are at about the level of early-20th mental institutions in quality of care and achievement of results. Schools and state education agencies are at best bottom-level support components of autism treatment, and out of their depth in being a primary or sole provider.

I don’t know much about autism, but I do know a lot about health insurance.

It’s pretty standard across the board for health insurance to not cover anything academic related. For example, health insurance is not going to pay for extra books or courses on the SAT.

There are many conditions which cause developmental delays, learning disabilities, etc. In general terms, health insurance will cover treatment of the condition itself, but not any additional services, resources, materials, etc. for that person to sort of “catch up” with peers outside of normal daily activities which are essential basic needs like feeding oneself, dressing oneself, bathing oneself, etc.

Things like autism are tough because the line gets really blurry between what is medical treatment and what is academic instruction or specialized teaching/learning programs. In addition, with the behavioral sciences, not everything is as objective as with other aspects of health care. Have an inflamed appendix? Surgery to remove. Suffer from depression? Maybe medication. Maybe talk therapy. How much talk therapy? How often? Which drug? How much? Etc. etc.

Due to all this, the opportunity for fraud with respect to behavioral health treatment is great. I’m not suggesting you’re attempting to defraud anyone. Here’s a real case of not even fraud, but the SAT study course I mentioned.

Kid in high school, straight A student, through junior year. Get meningitis and misses half of senior year. Meningitis is treated, and health is okay. But the kid can’t graduate on time. Mom and dad still want the kid to be able to enroll in college in the fall so they hire a tutor and enroll in extra courses and such outside of school to help the kid catch up on what was missed so he can enroll in college in the fall. Tutors and courses aren’t covered. Appeal upon appeal upon appeal. Health insurance should cover everything to get the student on track because he wouldn’t have been behind if he hadn’t been sick in the first place. The medical condition caused him to get behind so health insurance to pay for him to get caught up.

Health insurance should cover treatment of the disease/condition, but I don’t think it’s fair to expect health insurance to pay for helping someone get into college.

Sorry you’re stuck in the spot you’re in. The only advice I can offer is to work with the health care providers and the insurance company with respect to all of the testing, treatment, and authorization processes so that all services medical in nature get covered/approved properly and that you know what to expect to pay out of pocket for the non-covered services.

Good points, all, but the problem is that autism is a specifically-diagnosed condition with a specific set of therapies that are often highly effective. They’re also expensive and the criteria for judging quality are not very precise. Not surprisingly, insurance wants to push this therapy out of their arena and into schools (meaning taxpayer-funded, and thus crippled out of the gate) and into any cheap, palliative therapy that will get them past the window of effective treatment. Once a person is in his or her early teens, further recovery is almost impossible no matter how much therapy or other treatments are applied… so it’s no longer anyone’s concern except the parents.

The joke here being that the costly therapy, applied correctly and at ages when it can have the most effect, can slash lifetime care and institutionalization costs - which are borne again mostly by taxpayers. The health insurance industry has gotten off the hook long enough; it’s decades past due to make them cover effective autism treatment just as they do other more “accepted” childhood deficit syndromes.

It is indeed a medical condition (neurological) but unfortunately strictly medical treatments simply don’t work well (though drugs, for example, CAN be useful as part of the bigger picture).

The kind of testing the OP describes tends to be covered under mental health, at best - I wouldn’t be surprised if some insurance doesn’t cover it at all. Insurance certainly varies as to what they cover even on the strictly “medical” side (e.g. I’ve had drugs switched out on me, sometimes with very bad results, due to a policy change).

We had our son, Dweezil, go through similar testing 2 years ago and had to front the 3,000 dollar fee out of pocket. “Luckily” for us, he only required the one day of testing, and his presentation is fairly straightforward (high functioning autism). Insurance in our case DID pay a fair chunk of it, but it was out of network. That months’ credit card bill was… fun (and wiped out most of our flex spending for the year).

A friend had her daughter go through testing for ADHD and insurance paid very little of it. By comparison, when we took Moon Unit through testing at the same place, insurance ultimately paid most of it. That was a lot less involved than what you’re looking at, however.

Can you discuss with the clinic which options would be most likely to get him the educational accommodations, and do just that subset up front? You might, then, be able to persuade the school district to cover the rest of the testing.

Also if the clinic is in-network (which would surprise me; most are not) they may let you pay the negotiated rate for some of the out of pocket stuff.

I do feel your pain. Both of my kids have had IEPs since a young age; Dweezil under autism, Moon Unit as ADHD and ED (emotional disability). The school never tried to push either of them out of the special ed roster, though Moon Unit receives minimal services.

You should have the right to demand that the school district conduct testing as well. They may try to weasel out of it, which is where your privately-paid-for testing can serve you and your son very well. Look into finding an educational advocate of some sort to push the district as needed.

I include data-driven intensive ABA as “medical” - it certainly is as much as any other mental health regimen routinely covered under general health insurance.

If you’re going to limit the term to surgical/pharmacological techniques, then no, there’s very little that can be done “medically” for ASD. The drugs typically address other aspects, not the core deficit.

I was not asking for treatment or therapy to be covered- only evaluations; diagnostic testing. I have a PPO and have the freedom to choose where to go with or without a PCP referral, but I do have a referral anyway. My in network and out of network coverage is the same- 80/20.
I have insurance. This is a covered benefit. I’m just struck as to why my insurance thinks it can override a doctors recommendation- a doctor who has already met with my child (a covered visit) and based on that visit made the 11-12 hour recommendation. I have no clue why my insurance company would only ‘allow’ two hours or why they think it is their place to only ‘allow’ that much. Are they doctors? What difference does the insurance requirement for clinical notes make if the results have no bearing on the coverage?

Amateur Barbarian, you are exactly right about ‘passing the buck’ on costs and services. My son was born at 23 weeks gestation, one and a half pounds, and was a “previable” baby. Our state has a special rule that any baby born under 2 pounds is automatically “Medicaided.” Even though both my husband and I had private insurance, my son’s medical bills went to the state (and the taxpayer). He clocked in at a cool $740,000. I’m quite sure that if anyone looked far enough back they would probably find that that particular rule was sponsored by insurance companies. Why should they pay for and expensive baby when they can get someone else to do it?

We kept the appointment and paid the large bill.

I was pleased and the efficiency and thoroughness of the clinic. My son worked fast and was able to complete all the tests and evals on time- he underwent about 12 different tests today and did them all (OK- most of them) with a good attitude.

We will get a written report in about a month and will be able to make a follow up appointment then to go over the results.

While I was at the clinic with him today, I actually got an email from the school- they want to send home another questionnaire. The district has given us very good evaluations and treatments in the distant past, but it does seem they are really dragging their feet this time and we really need help now.

He is really getting down about his classroom difficulties. I’m hearing from him “Well, if I study, I don’t do well and if I don’t study, I don’t do well, so I’m not really seeing the benefit of studying at this time.”

He studied to two hours a night for three nights in a row (with Dad, so there was no goofing off- 6 solid hours on one subject, and this is not new. Dad always has done and always does homework with him. Dad has so much experience he could probably teach by now.) and still only got a 55 on his big test. Wash, rinse, repeat and he made a 65. I would really like to know what is wrong before he winds up failing or failing out because he is very, very bright.

I’m completely confused about your chronology of special ed services–something sounds very funky with your school system. Did the district actually decide that he no longer qualified for special ed and exited him, thus terminating his IEP? How did that happen without evaluations being done or requested? How did they offer you what sounds like a very restrictive placement on a separate campus if they thought he no longer needed services? And if he was actually exited, then the 3-year reevaluation cycle has nothing to do with anything, since that’s for active IEPs. You’d have to go through the whole screening meeting/initial evaluation process again, and the deadline on that is either 60 or 90 days from when the parent submits a written request to the school, can’t remember which. If you started this with them last November, they have majorly dropped the ball.

If it’s for a school evaluation then that’s a likely reason it’s not being paid for. For example, medical screenings to get into school sports programs are usually not covered. Not knowing the details of your policy or what the medical center told them, it’s hard to say for sure. Though that wouldn’t really explain why they’re covering part of it.

Bolding mine. It may come as a surprise to some, but insurance companies employ large numbers of doctors and nurses. They have the sometimes unenviable task of matching claims against their medical policy. Medical policy is usually created and refined over years with input from specialists and clinical professionals in that area or field, with an eye on ensuring people have access to clinically-proven therapies and treatments. As stated above, the insurance company is not obligated to cover fees and services it has not agreed to cover per your insurance policy. They do make exceptions, but usually under very unusual conditions.

Yes, your description is what happened.

I, too, may have dropped the ball by not knowing how things worked.

I presumed that since he did have a 504 and IEP, that even though he was removed from SPED, he would still be able to get back in if needed and that he would still be eligible for updated evals if needed. I did know that they had only a certain number of days to respond to my November (and February) written requests, so when I didn’t hear back from anyone I became concerned that they weren’t interested in doing it and looked elsewhere for the testing.

I do have coverage and I am not requesting therapy or treatment, just testing. Neither of the people I spoke with at the insurance company identified themselves as doctors or nurses.

The medical staff usually only get involved in the case of an appeal. Otherwise, it just goes by the book. (a lot of which is written with medical staff guidance)

It doesn’t matter if they were interested in it or not–by law, they have to respond to your request and hold an IEP screening meeting. Now, at the screening meeting, they could decide there was no reason to suspect an educational disability (a highly suspect finding given that your son has an autism diagnosis) and decline to do testing, but you’d at least have to meet and talk about it first. They can’t just unilaterally decide they aren’t going to bother.

One option you have is to save whatever this testing was going to cost and use it to hire a special ed attorney or an educational consultant/advocate to go back to your district and demand they start complying with IDEA and restart the IEP process. The school system really, really should be doing this testing for you. I wonder if they are trying to hide because they’re realizing he never should have been exited in the first place.

I’m still trying to get my head around a district exiting a student from special ed and then offering said IEP-less student a placement that’s 100% outside general ed. That’s crazy.

I don’t have advice on the insurance, but from a personal perspective, if there’s any way you can dig up the cash and get the testing done, I would recommend that you do it, and try to go after the insurance later. (They probably won’t pay anyway.) Time has already been wasted on this.

Also, I do not understand how the district can drop your son and still say he’s eligible for a special school. And without your agreement. This all sounds like some violation of the IEP process, but I may not be understanding your post. Does he still have an IEP? DId you appeal their decision to drop him from SPED?

I did exactly that- I kept the appointment and paid for it. My child really needs the testing. I really need to figure out where he is, skill wise, and how to best prepare him to pass high school and go on to college.

I still really do not understand how he got dropped.

He had an IEP and got great services all though elementary. He had PT, OT, SLP and social skills training. I also did some home programs I made up myself in the areas of social skills and safety.

I also actively cultivated a small cadre of friends who would help me look out for my son during the school day and protect him from bullies and help him with problems. He often has problems with things like getting lunch, such as other kids jumping in front of him until he is out of time, or getting into or out of gym class with the clothing changes and disruptive events with other kids, or into his locker, which he still cannot do by himself. He was always a disorganized student, but it was elementary school. One would expect to help a kid with their homework then.

My husband and I were called to the school in 6th grade and told he was being dis-enrolled from SPED because he was academically successful. We were surprised, but since our history with the school was that they had done right by us in the past, that this was also a good recommendation. We accepted their opinion and my child was mainstreamed. He struggled, but we figured 'Well, some struggle is to be expected. He’s lost his accommodations and supports. He will adjust."

He’s in 11th grade now and hindsight tells us that this was a bad decision on our part. He is very very poor socially, but that comes with the diagnosis. He doesn’t care about that and neither do I as long as he is not mistreated in large ways. We can deal with small slights.

Academically he would not pass at all if it weren’t for near heroic efforts on the part of his parents to communicate with teachers about past, present, and future assignments, homework help, and general organization. Every year we hope to wean him off parental support and are just not able to do so.

For example, my husband does the math part: He gets the lesson plans from the teacher, stays about a week or two ahead so he can teach himself how to do it, then reteaches the lessons to our son. My husband uses the school textbook, the textbook website (which has lesson videos), the Khan Academy and YouTube to keep abreast of the lessons.

I guess he does not have and IEP anymore. I presume it died when he was disenrolled. I want it back.

My son is very happy today because he was out for testing at the university yesterday. That means that the classroom tests he was scheduled to take yesterday have already been done. That means that he gets to sit in the hall to take yesterdays’ tests. That means he gets a quiet environment and probably extra time to take the tests because the teacher will likely forget he is out in the hall.

I’m not very happy about this because it means he will miss another day of instruction (he will now be 2 days behind) putting him at risk of being further behind that will require him to come early or stay late to get caught up again.

The whole mess is just a vicious cycle that could be reduced if he just had a few simple accommodations in the first place. Ultimately, this problem is probably our fault for letting the school disenroll him so easily.