Autism and Insurance: Myths vs Reality
December 22nd, 2011
Earlier this week, I had arranged to have coffee with a close friend of mine. When I arrived, she was holding a copy of the weekend edition of the Wall Street Journal and was quite upset about an article on the “Affordable Care Act” (”Obama-care”). In this article, it was mentioned that the department of Health and Human Services was planning to leave it up to the various states whether or not to mandate “autism treatment” coverage. This, she felt, was a cruel blow to families with autistic children. Fortunately, I had been through this all before, many years ago, when my child was first diagnosed with autism, so I had some perspective to offer.
Back in those dark days, we were casting about for something, anything to do to help our child, even to the point of attending a “DAN! conference”. In that “conference” (it was more like a revival meeting than a conference), we heard repeated, over and over, that health insurance plans would not pay for anything related to autism, the dreaded “299.0″ (ICD-9 code for autism). As I later recalled, this “fact” was most often mentioned by practitioners who offered “alternative” treatments for autism.
Shortly after returning from that “conference”, I had the opportunity to question (”interrogate” might describe the flavour of that exchange better) our paediatrician about that point. He was - and is - an exceptionally patient person and managed to answer my question without adressing my obvious hostility.
As he explained it, the insurance companies look over each bill and ensure that - among other things - that the procedural code (CPT codes) matches up with the diagnostic code. They want to ensure that a doctor isn’t claiming reimbursement for an appendectomy when the diagnosis is “bunion”, for example. For this reason, chelation and HBOT aren’t “approved” for autism because - as I’ve outlined in several ‘blog postings - they haven’t been shown to be effective in the treatment of autism, just as appendectomy hasn’t been shown to be an effective treatment for bunions.
Other issues that arise, especially in the “alternative” treatment of autism, are when the “treatment” is either of questionable effectiveness, such as “Applied Behavioral Analysis”, or its effectiveness has not been demonstrated. Insurance companies usually see these as “experimental” treatments and refuse to pay for them.
However, parents have also complained that they are unable to get insurance companies to pay for “mainstream” therapies, such as speech therapy and psychiatric consultation when the diagnosis was “autism”. This, according to our patient paediatrician, is due to the ignorance of the practitioner. There is no universal treatment for “autism” - it is too broad and heterogenous a diagnosis for that. So, to justify - for example - speech therapy, another diagnosis is needed, since the diagnosis of “autism” does not, in itself, imply a need for (or benefit from) speech therapy. Experienced and well-trained practitioners are aware of this requirement and so don’t submit bills that don’t have proper justification for the prescribed (or recommended) therapies.
When I later questioned some of the parents who had complained about having insurance companies refuse to pay for “autism”-related treatments, I found that a few things kept cropping up:
[1] Many (but not all) had to submit the insurance claim themselves because the practitioner refused to bill insurance directly (for those not in the US, this is unusual - most doctors send their bill directly to the insurance companies). The parents paid - up front - for the visit and/or treatment and were given “documentation” to send to their insurance company.
[2] Many of the treatments that were “refused” by insurance companies were “alternative” treatments, either because they have not been shown to work for anything (e.g. homeopathy) or because they haven’t been shown to work for autism (e.g. chelation, thiazolidinediones, etc.).
[3] The charges - for office visits, at least - were significantly above the norm for the community. In a region where a first visit to a paediatric neurologist or child psychiatrist can run $150 - $200 (covered by insurance), there were “practitioners” who had not completed a residency who were charging $400 to $800 for a one-hour visit. Some were also charging $500 an hour for “telephone consultation” (which included answering questions about complications of the “therapy”). Not surprisingly, insurance companies declined to pay these inflated charges.
In contrast, my own experience with insurance companies, while often frustrating, has shown that if the practitioner knows the basics about insurance billing, there is no problem getting appropriate care paid for. We have gotten our insurance plan - not a “gold-plated” plan, but plain vanilla PPO-type insurance - to pay psychiatrists, psychologists, neurologists, gastroenterologists, orthopaedic surgeons, speech therapists, occupational therapists, etc. We have also gotten it to pay for a variety of physician-prescribed medications.
The “trick” for getting insurance to cover medical care for autism? Apparently it’s nothing more than avoiding questionable practitioners. Legitimate practitioners know how to bill insurance appropriately and - more importantly - are conscientious enough to do it and do it correctly.
Just to clarify - our insurance plan has covered all of these practitioners and treatments, but little or none of it has been for “autism”; it’s been for “dysfluency”, “gastroesophageal reflux”, “oppositional disorder”, etc. This is what competent and experienced practitioners do. If your doctor can’t or won’t do that….
Prometheus
Filed under: Autism Policy, Autism Practitioners, Health Alerts
December 23rd, 2011 at 12:02 am
Another great and informative post Prometheus. You have put the widespread complaints of the “curebie” (and not coicidentally anti-vaxx) parents into context. Although, to be fair, do you think there are state to state variances that make obtaining treatments for co-morbidities difficult?
December 23rd, 2011 at 2:09 am
@ Science Mom: Prometheus probably could answer that question for you, but I believe there are state-to-state variables for coverage and reimbursements for co-morbidities.
I had a very physically and mentally disabled child with a slew of medical problems, and I became a bit of an expert on medical insurance coverage in New York State.
I found out that all insurance company that sell medical insurance coverage in New York State must comply with the New York State Insurance Department’s regulations, for offering coverage for certain procedures and treatments.
I believe New York State was the one of the first states that compelled insurance companies to cover reconstructive breast procedures following mastectomies, as well as “elective” mastectomies/reconstruction for women who have BRCA gene mutations.
As I recall, these mandatory procedures and extended coverage for other treatments were a major sticking point during the debate for national health care coverage, and the other debate about giving Americans the option to buy medical care coverage from an out-of-state provider.
I was fortunate that I resided in New York State when my son was born and throughout his life, because of the New York State Insurance Department’s regulations that stipulated generous re-imbursement from our health insurance provider. In spite of this excellent coverage, my son’s medical and therapies bills, that were not covered or partially covered, were huge, and put a major dent in our family budget.
Medicaid coverage is another story and there is definitely a difference between what “generous” states such as New York offer and what other states offer.
There are certain procedures and treatments that are mandated by the Federal government. Other procedures and treatments are deemed to be optional. Arizona Governor Jan Brewer eliminated Medicaid coverage for major organ transplants, in order to decrease the budget deficit in that state.
Yes, I am a strong proponent of a national health care plan…to eliminate the inequities inherent in the present system.
December 23rd, 2011 at 10:57 am
So your basic point is that you can get insurance companies to pay for treatments for autism as long as you don’t say it is for autism? And the pracitioners who don’t use this subterfuge are the questionable ones?
If this were mythbusters, I would say you confirmed your own myth.
December 23rd, 2011 at 12:03 pm
MJ, Since Prometheus is one of the most articulate science-bloggers around, I would say that your accusation is wilfully disingenuous. Please refer back to the statements:
And:
Since morbidities occurring concomitantly with autism that may or may not be related to autism, it is not surprising that separate ICD codes are required for coverage. What you call “subterfuge” is merely proper procedure to ensure that a particular (valid) treatment is covered.
December 23rd, 2011 at 1:28 pm
MJ: I think you are misinterpreting what Prometheus and other posters have stated about health care insurance coverage.
Perhaps you need to re-read my post above. Each state has their own insurance “regulators” that issue directives to insurance companies that sell “coverage” within that particular state. Some state’s regulators are “more generous” in their stipulations. I gave the example of New York State and their regulations/directives to reimburse for breast reconstruction and elective mastectomy/reconstruction. Many states do not have those procedures listed as “requirements” for insurance companies to offer these procedures.
(hint) Many corporations have left N.Y.S. to relocate to other states, where the costs to insure their employees is much less.
As Science Mom stated, every visit to a physician or a therapist, as well as every “procedure”, every “test” and every surgery, has an ICD code…for every patient, not just patients who are diagnosed with autism. I’m surprised that you haven’t looked at your own bill for medical services rendered to you and haven’t found the ICD codes that are used for reimbursement for care you received.
There is expanded coverage for certain treatments such as ABA, occupational, speech and physical therapies for children on the “spectrum”…see the article:
“Governor Cuomo Signs Law To Expand Health Care Coverage for Treatment of Autism Spectrum Disorders” (November 1, 2011)
There is no coverage and no ICD codes for chelation or HBOT for “treatment” of autism, just as there is no coverage and no ICD codes to chemically castrate autistic kids to get them “to behave”.
I suggest you check out your own state’s insurance regulations to see if there is expanded coverage for ABA, occupational, speech and physical therapies.
Of course, I would always recommend that parents of a developmentally disabled child who is in residential care funded my Medicaid, to continue to pay for the child’s private health care insurance.
December 23rd, 2011 at 6:57 pm
Science Mom, believe it or not, I can read.
There is a large difference between insurance not paying for chelation or HBOT because they are completely unproven and insurance not picking up tab for proven treatments that target the core symptoms of autism.
Lets take speech therapy. If you have a child with autistic disorder or possibly pdd-nos, you have a child who, almost by definition, has issues with speech. So the line “since the diagnosis of “autism” does not, in itself, imply a need for (or benefit from) speech therapy” is nonsense.
If he were only talking about Aspergers or some other types of pdd-nos, then there might be a point. And, if I am not mistaken, there is quite a bit of research showing that speech therapy is effective in treating speech problems - including those in autism.
The point is that if the speech services are billed under “autism” they get denied. If they are billed under expressive language disorder or another communication disorder, they get approved.
But they don’t have expressive language or some other communication disorder, they have autism. More importantly, if you look up these other communication disorders in the DSM, you would see that a diagnosis of autistic disorder or pdd-nos precludes these other labels from being used.
So if other codes are being used that cannot legitimately be used concurrently with the autism label, what does that say about why they are being used? Maybe to get the insurance to pay for the treatment because they won’t cover autism?
It doesn’t matter how you slice it or try and re-frame this as a quack vs mainstream issue, the underlying problem is that insurance companies don’t want to pay for autism treatments and providers are forced to get creative with their billing.
Fortunately this is changing and an increasing number of states are mandating that insurance cover autism specific treatments.
December 23rd, 2011 at 8:57 pm
‘…autism specific treatments’
there aren’t any treatments specific to autism…
December 24th, 2011 at 2:03 am
@ MJ: I still am not understanding why you think an autistic child won’t have needed therapies and treatments.
My child was born with a rare genetic disorder. He was profoundly mentally retarded, had spastic quadriplegia with bilateral hip dysplasias, grand mal and psychomotor seizures, pancytopenia with episodic internal bleeds and was immune compromised.
He was frequently hospitalized and the hospital billed and was reimbursed for whatever treatments, tests and procedures he required to restore him to health. The ICD coding for the care he received during hospitalizations was no different than the ICD coding for every other patient treated for orthopedic problems, internal bleeding, hydration, seizures or infections, that requires hospitalization.
The very same ICD coding was used by his physicians in the hospital or for office visits…there was no “special” coding used for his genetic condition…just like there is no “special” coding to bill for a child with Down Syndrome.
From Wikipedia:
The International Statistical Classification of Diseases and Related Health Problems, 10th Revision (known as “ICD-10″) is a medical classification list for the coding of diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases, as maintained by the World Health Organization (WHO).[1] The code set allows more than 14,400 different codes and permits the tracking of many new diagnoses. Using optional subclassifications, the codes can be expanded to over 16,000 codes. Using codes that are meant to be reported in a separate data field, the level of detail that is reported by ICD can be further increased, using a simplified multiaxial approach.
WHO provides detailed information about ICD online, and makes available a set of materials online, such as an ICD-10 online browser,[2] ICD10Training ICD-10 online training,[3] ICD-10 online training support,[4] and study guide materials for download.
The International version of ICD should not be confused with national Clinical Modifications of ICD that include frequently much more detail, and sometimes have separate sections for procedures. For instance, the US ICD-10 CM has some 68,000 codes. The US also has ICD-10 PCS a procedure code system not used by other countries that containe 76,000 codes.[5]
Work on ICD-10 began in 1983 and was completed in 1992.[1]
Note that the US has the ICD-10 PCS procedure code system that contains 76,000 codes. What procedure, treatment or therapy for children with autism are you concerned with…that cannot be found within that 76,000 ICD-10 PCS coding system?
December 24th, 2011 at 12:51 pm
Then how did you also fail to comprehend this too?
Emphasis added. “Almost by definition” (your words) is obviously not universal so an ICD code for autism alone is not adequate for obtaining individual services. To use another example, take hepatitis or meningitis; a patient won’t receive insurance coverage or reimbursement based solely upon those ICD codes since presentation and treatment vary. Now if you want to complain that some states are sorely lacking in laws that provide adequate, evidence-based treatments for symptoms and co-morbidities of ASDs, then that’s valid. But to claim that physicians who are knowledgeable about the proper ICD codes for specific symptoms that are concurrent with an autistic child are the ’subversive ones’ is a baseless claim indeed.
December 25th, 2011 at 12:26 pm
MJ about insurance company’s coverage:
That’s exactly the point I was making. The insurance companies - like most of the medical community - recognise that the presentation of autism is so broad and non-specific that it is useless as a predictor of what therapies will be needed. Ergo, they require the practitioner to provide a specific problem (”diagnosis”, if you like) to justify treatments.
A less emotionally laden parallel would be using a diagnosis of “poor visual acuity” to justify cataract surgery. While some people with poor vision might benefit from cataract surgery, it’s not a useful treatment for everybody with vision problems.
Not true - what they have is “autism with expressive language disorder”. A diagnosis of autism does not preclude having other diagnoses. Nor is it unethical or “cheating” to say that an autistic child has “expressive language disorder” if they, indeed, do have expressive language disorder. Having autism doesn’t mean that all other conditions - even if they are connected to the autism - are somehow “invalidated”. Having “autism” also doesn’t mean that any particular disability is present 100% of the time, with the exception of difficulties with social interaction (and possibly not even that, in some cases of “PDD-NOS”).
Insurance companies don’t “want” to pay anything - they pay out whatever they are contractually obligated to pay and not one farthing more. As far as practitioners needing to be “creative” - I don’t think that requiring them to give specific justification for therapies is asking them to be “creative”.
If you took your car to the garage and asked them to change the oil, you’d refuse to pay to have your alternator replaced unless they could justify it, wouldn’t you? But if they said, “We checked the alternator and found it wasn’t charging, so we replaced it.”, you’d probably be willing to pay the bill. Insurance companies are no different - their contract with you is that they will pay for covered care as long as it is properly justified.
MJ goes on a bit more:
The problem is that, with the exception of difficulties in social interaction, there aren’t any “core symptoms of autism”. Yes, I know that the DSM IV (TR) has a list, but the majority of people with the “autism” label today have “PDD-NOS”, which means that they have some of the items on the list, but not enough to make the full “autism” diagnosis. Thus, the lack of “core symptoms”.
Furthermore, I am at a loss to come up with any “autism specific” treatments, pharmaceutical or otherwise, that have been “proven”. The closest would be ABA, which is still under a cloud because its results aren’t easily replicatated and because it hasn’t been tested against an adequate placebo (e.g. just playing with the child with the same intensity and for the same amount of time). Everything else I know of has been shown to “work” for specific problems in select autistic individuals - hardly “autism specific” therapy. Hopefully, MJ can inform us further about these “autism specific” therapies.
Frankly, if there were treatments that “worked” with all (or even most) people with the “autism” diagnosis, I think we would have heard about them by now. Even most of the “DAN!” docs no longer claim that any of their treatments are universally effective. And if “autism” isn’t a specific indication for any treatment (i.e. everyone - or most people - with “autism” should get it), then it can’t be a sufficient justification for any treatment.
That’s the point - insurance companies won’t pay for any treatment based solely on a diagnosis of “autism” because that diagnosis - apart from being uselessly vague and unhelpful - isn’t a sufficient indication for any treatment. It’s not “creative coding”, it is simply about being thorough and specific in justifying treatments.
By the way, don’t be under the illusion that changes in state laws will change things much - except for those laws that spell out which specific treatments are “autism specific treatments” (which, at present, is as scientifically sound as specifying that Pi = 3.00), insurance companies will still be able to exclude unproven therapies. And laws that specify only that insurance companies must cover “autism treatments” are going to run afoul of the dreaded “Catch 22″: the insurance companies will be required to cover “autism specific therapies”, but there aren’t any “autism specific therapies”.
Prometheus
December 25th, 2011 at 1:03 pm
Sciecne Mom asks:
Let me first state, emphatically, that I am not an expert on state-to-state differences in insurance law. From my experience, I have seen that some states have many treatments and conditions which all health insurance policies written in that state must cover and some states have little or no mandated coverage. Using the state requirements as a baseline, your specific insurance policy can cover as little or as much as you care to pay for.
From my experience, the differences between states seem to center on limits for “mental health” coverage, lifetime payout limits, pregnancy and birth control coverage and a smattering of specific therapies and diagnostic testing (often relating to chronic diseases and cancer). I currently live in a state that has a lot of mandates (and, consequently, very high insurance premiums), but I have lived in states with few mandates.
Again, based on my experience as an academic gypsy, I’ve never had any trouble getting insurance (even the rock-bottom insurance universities provide their junior faculty) to pay for proven therapies and justified diagnostic work. On occasion, our physician has had to submit detailed justification for treatments that were expensive, but we’ve only had one denial, and I sort of agreed with them on that one.
Obviously, if you have a “bare bones” policy in a state with no mandated coverage, you’re going to pay a lot more “out of pocket”. However, you’ll also be paying a lot less in premiums.
I look at health insurance - and all insurance - as a gamble. The insurance company is betting that - on average - the premiums paid will exceed (at least slightly) the amount of money they pay out in benefits. I, on the other hand, am betting that I will get more in benefits than I pay in premiums. I’m also taking advantage of the fact that if something catastrophic happens, the insurance company will “take the hit” instead of my bank account. With a “special needs” child, I usually get a bit more more in benefits from the insurance company than I pay in premiums and deductible (even taking into account what the University pays for my insurance, which could otherwise show up in my paycheck), so I don’t begrudge them their paperwork barriers.
In the end, the story I often heard when I was “hanging out” with the “alternative” autism therapy crowd - that having an “autism” diagnosis would prevent anything from being covered by insurance - hasn’t held up to scrutiny. If people had trouble getting psychologists or psychiatrists paid for, it has been because their insurance plan didn’t cover “mental health” care (at all or adequately); it wasn’t because autism, the dreaded “299.0″, was singled out for special abuse. If insurance refused to pay for “toxic metal testing”, it was because they didn’t provide any justification for testing the urine for twenty or thirty metals (I’m not sure I’d know what would justfy that sort of “shotgun” testing), not because their child had autism.
Prometheus
December 25th, 2011 at 9:14 pm
I think what you say here is true, but in my experience, there are insurance companies that refuse to pay for legitimate, proven therapies (speech, occupational therapy) that benefit autistic people, *even when coded with the correct code for the comorbid condition* (developmental language disorder, dyspraxia, etc.)
They get away with it by classifying them as “rehabilitative” therapies, and they limit coverage to a very small number of visits per year (I’ve seen policies with limits ranging from 6 per year to 20 per year). The reasoning is that occupational therapy, for example, is a “rehabilitative” therapy — a treatment you’d receive after an injury or accident, for a limited period of time, after which you would be completely “rehabilitated.”
My policy requires us to get re-authorized every year for speech and OT for my son, even though both are clearly beneficial to him on an ongoing basis, and it would be much more beneficial for him to receive the therapies weekly year-round, rather than for just a few weeks a year.
December 25th, 2011 at 11:55 pm
Sarah,
The problem you refer to is not happening because your son is autistic - it is happening because your insurance policy has limited coverage of “rehabilitative” therapies.
The “myth” is that an autism diagnosis is a bar to some or all therapies, not that some insurance policies have very limited (unreasonably limited, in my opinion) coverage of certain therapies, regardless of the diagnosis.
To reiterate, I’m not claiming that insurance companies are generous and giving - that would be ludicrous. My position is that insurance companies (and public insurance plans, like Medicaid) don’t block autistic people from getting treatment to any greater extent than they block non-autistic people.
I note that you are able to get coverage for speech and occupational therapy for your son, albeit much less than might be optimal, so apparently a diagnosis of “autism” didn’t preclude getting those therapies covered to the limits of the policy.
The annual reauthorisation is another common feature of insurance contracts. I have a college friend who was paralysed in a skiing accident; his disability insurance plan requires that he get annual physician’s statements documenting that he is still a paraplegic, even though the chance of a spontaneous recovery (especially after twenty years) is indistinguishable from zero. Apparently, they require annual reauthorisation because [a] it is their standard procedure and [b] it is written in the insurance contract.
Yes, insurance companies are heartless, stingy, penny-pinching bastards who will make you jump through pointless hoops to get them to pay for the care you and your loved ones need. So, I might add, are the administrators of Medicare and Medicaid and - as far as I can tell - the folks who run the NHS across the pond. It’s what they do. However, I haven’t seen that they are any more heartless, stingy or penny-pinching in the presence of an “autism” diagnosis.
What I have seen is that “alternative practitioners” who won’t direct-bill insurance often try to shift the blame by telling parents that the insurance companies routinely deny coverage when the diagnosis is “autism” when the fact is that their “therapies” are unproven (and thus not covered) or that they - the practitioner - are too lazy to bother putting down the proper diagnosis. Another aspect, mentioned by an anonymous reader, is that some of these “alternative practitioners” may be barred from billing insurance, either because they lack the required license or, in some cases, because they have previously been caught fraudulently billing insurance.
Prometheus
December 26th, 2011 at 12:57 am
Understood — I was not disagreeing with the main point of your post here. And yes: you’re right that the denial of needed coverage in my example has nothing to do with the diagnosis and everything to do with insurance administrators being assholes.
Just wanted to clarify that there are circumstances in which legitimate treatment is limited or not covered, and that the fact that these therapies (speech, OT) are denied by insurance does not group them in the same category as the quackery you’re discussing in the rest of your post.
December 26th, 2011 at 2:38 am
Prometheus raises some very valid points about the “nature” of speech, OT and physical therapies. Every private medical insurance company that I have ever dealt with paid for limited physical therapy for my son (12 physical therapy sessions in a calendar year).
The one exception was following an actual injury (supracondylar fracture of his right femur with closed reduction and immobilization in a hip spica cast for 10 weeks). He was hospitalized for 2 weeks for this injury and was in a hospital bed in my dining room and required 24/7 round the clock care. The insurance company paid for 1 eight hour shift/day nursing coverage to relieve me for the six months of rehabilitative care. He also received five in-home PT sessions/weekly, during rehabilitation.
For the years that he was in a “school program” until age 21, I insisted on, and received 2X weekly PT sessions provided through the school system. I also paid for 2 additional PT sessions weekly for all those years up until age 21 and beyond…until his death at age 28. Out of pocket costs were ~ $15,000/per year.
Insurance companies will only pay for rehabilitative care. Because I wanted to prevent contractures for my non-ambulatory child and avoid the inevitable bilateral amputations of the head of both femurs, we paid for these PT sessions.
My son died seven years ago, but had he survived both parents, the “special needs trust” set up for his benefit would have been funded from our joint assets, to continue to pay for the physical therapy sessions…to prevent painful contractions.
There are severe limitations for therapies that are not “rehabilitative” for a specific injury or disorder and the limitations had nothing to do with his specific genetic syndrome. My son was never going to ambulate…we just wanted him to not undergo risky surgery for contractures that were prevented by physical therapy and passive range of motion.
Because my son resided in a Medicaid-funded Intermediate Care Facility, he had to be recertified yearly…which as Prometheus pointed out…is a joke. SSI also wanted to know how I was spending his $35 monthly pittance, because I was his representative payee. I, of course, provided them with copies of checks for physician co-pays and a few of the paid bills for PT.
December 26th, 2011 at 3:13 am
Just a short comment about ABA. When my son was born in 1976, he had pronounced (self-stimulatory, self-injurious and eye avoidance) traits of autism…he had “autistic-like behaviors”…which is very common with kids who are severely and profoundly mentally retarded.
I was fortunate to have been trained by a NYS-employed psychologist and speech therapist in “behavior modification” techniques…a forerunner to ABA therapy, which used many of the ABA techniques to develop a child’s social skills and “eliminate” self stimming and SIBs. My husband and I attended classes provide by the State and met some parents whose children were diagnosed with classic autism, who also received training.
After 6-8 classes, the parents all received in-home individualized sessions provided by the psychologist/speech therapist team, to evaluate each child, their strengths, their weaknesses and the types of behaviors that we wanted to “reinforce”. We all used “rewards”/not aversives to develop the children’s social skills and to decrease/eliminate self stimming and SIBs.
All the parents reported that the behavior modification worked to some degree, to ameliorate the more severe behaviors and to socialize their children. It was helpful to us all and to all of our children. There were no “specialists” that were paid for by insurance…we became the therapists…and we devoted up to 40 hours/week for months on end to help our autistic or autistic-like children.
December 26th, 2011 at 11:28 am
Prometheus you said -
“Not true - what they have is “autism with expressive language disorder”. A diagnosis of autism does not preclude having other diagnoses. Nor is it unethical or “cheating” to say that an autistic child has “expressive language disorder” if they, indeed, do have expressive language disorder.”
Have you looked up the definition of “expressive language disorder” in the DSM IV TR? It says quite clearly that this diagnosis is NOT valid if there is also a diagnosis of autism. Section 315.31, part C states -
C. Criteria are not met for Mixed Receptive-Expressive Language Disorder or a Pervasive Developmental Disorder.
Therefore what you are saying simply is not true. Children with autism can and often do have problems with expressive language, but you cannot have a child with a diagnosis of a pervasive developmental disorder AND a diagnosis of expressive language disorder.
Maybe you think it is a valid and appropriate thing to do, but the DSM does not.
The same goes for some of the other diagnosis that are commonly used in children with autism to get insurance to pick up the bill. The other codes aren’t used because they are more appropriate, they are used because insurance will pay if those codes are used.
You are trying to make this about quack vs mainstream and that simply is not the case.
“Yes, I know that the DSM IV (TR) has a list, but the majority of people with the “autism” label today have “PDD-NOS””
What is your source for the claim that PDD-NOS makes up the majority of people with the autism label? All of the data that I have seen out of places like the CDC suggest that autistic disorder is the most common with PDD-NOS being a close second.
“The problem is that, with the exception of difficulties in social interaction, there aren’t any “core symptoms of autism”. Yes, I know that the DSM IV (TR) has a list, but the majority of people with the “autism” label today have “PDD-NOS”, which means that they have some of the items on the list, but not enough to make the full “autism” diagnosis. Thus, the lack of “core symptoms”.”
You are honest suggesting that because there is a substantial variation in the presentation of externally observable behaviors that there aren’t a core set of symptoms that are commonly seen in people with autism? That is quite possibly the silliest thing that I have ever heard.
Name one other mental disorder were every single person with the disorder has the exact same set of symptoms. Or better yet, go find a set of identical twins with autism and observe how different their external behaviors can be.
Autism looks different in different people because it disrupts typical development. But since even two people who are genetically identical aren’t in fact identical and develop differently, the externally observable behaviors can be different.
“Everything else I know of has been shown to “work” for specific problems in select autistic individuals - hardly “autism specific” therapy. ”
Given how varied the behaviors of autism can be, it really shouldn’t be a surprise that every treatment doesn’t work for every person who fits the label. That does not mean that the treatment does not target the core symptoms of their autism.
By your logic, acetophenone would not be a specific treatment for a headache because it doesn’t always get rid of the headache.
“That’s the point - insurance companies won’t pay for any treatment based solely on a diagnosis of “autism” because that diagnosis - apart from being uselessly vague and unhelpful - isn’t a sufficient indication for any treatment”
Then why are you wasting your time talking about something that is “vague and unhelpful”? If the entire label is worthless and doesn’t represent anything, then why do you waste your time talking about it?
December 26th, 2011 at 1:08 pm
I still do not understand why MJ does not provide a specific autism treatment…aside from physical, occupational and speech therapies…where medical insurance companies would refuse payment.
I believe that Prometheus explained that medical insurance reimburses for services billed with ICD 10 codes…not the DSM IV diagnostic codes.
Science Mom, Sarah, Prometheus and I explained that therapies such as PT, OT and Speech are limited for all policyholders/dependents…not just for kids who are on the “Spectrum” and not just for kids with other developmentally disabilities.
Now MJ mentions “acetaphenone” for headache…which is no longer used for headache or as an anticonvulsant in the United States. It was replaced by paraldehyde and chloral hydrate.
Paraldephyde, is no longer available in the United States having been replaced by benzodiazapines (typically lorazapam).
Chloral hydrate formerly used to induce sleep for EEG testing, has been replaced by EEG testing using 24 hour EEG monitoring. Years ago, I kept my son up all night and “allowed” him to sleep in the early morning, once the electrodes were in place, in the darkened EEG lab.
“Then why are you wasting your time talking about something that is “vague and unhelpful”? If the entire label is worthless and doesn’t represent anything, then why do you waste your time talking about it?”
It seems that MJ is the only commenter here that finds Prometheus’ blog “vague and unhelpful”.
I again am requesting that MJ provide an instance where a medical treatment or prescribed medicine would not be “covered” due to a diagnosis of autism.
December 26th, 2011 at 1:10 pm
Hello friends -
Interesting discussion.
Our biggest driving cost when trying to help our son was, bar none, mainstream therapies, especially ABA. If anything was going to bankrupt us about autism, it was going to be mainstream therapies. For the first few years he was getting it, there was simply no coverage for it in my state (Florida) and coverage provider (Blue Cross / Blue Shield). Similarly, speech and OT were not covered. All of our forays into alterantive medicine were an absolute bargain in comparison.
I would add that I do not believe that this didn’t have anything to do with what diagnosis my son had or did not have. The speech therapists and ABA therapists knew we were struggling, we cut hours several times due to cost. They are in the business of making money just the same as the insurance companies, and what they told us was, ‘your insurer doesn’t cover for developmental disabilities’, as opposed to ‘get a different diagnosis and we can service you’. If I remember correctly, Sullivan had a post about this a while back (a few years ago) that the real world kept me from finding this morning. The gist was that the insurance company for his state has specific riders that kept children (or adults) with developmental disabilities from getting services like ABA.
Friends of ours with different insurance plans were getting speeh and OT paid for by insurance, and their children had the same diagnosis as my son, so I think the issue was, at the time, there were no state regulations one way or the other.
That changed about a year ago when the law mandating insurance coverage for ABA went into effect. Thank goodness.
The billing component of this discussion is an interesting one that I think is largely under the radar of people who aren’t involved. However, I believe that a great number of doctors hire several people whose sole purpose is to reconcile codes and submit bills to the different insurance companies, each of which have their own rule sets.
- pD
December 26th, 2011 at 4:05 pm
Lilady,
“I still do not understand why MJ does not provide a specific autism treatment…aside from physical, occupational and speech therapies…where medical insurance companies would refuse payment.”
Let me paraphrase what you just asked me. You basically asked me what autism specific treatment isn’t covered after you exclude almost all of the mainstream autism therapies.
The only other mainstream therapies out there are behavioral ones such as ABA or social groups or medication. The former insurance companies don’t like to pay for unless forced by state mandates while there are only one or two of the latter.
Although then again, even though these drugs are specifically approved for autism, their use is only supported in a subset of the autism population and they have uses other than for autism.
So I wonder what the ICD-9 code should be when a doctor proscribes aripiprazole for a child with autism because, like speech therapy, its use isn’t limited to autism and it will only help a subset of the autism population. By Prometheus’s definition these drugs aren’t “autism specific” and should not be paid for under the ICD-9 code for autism either.
“I believe that Prometheus explained that medical insurance reimburses for services billed with ICD 10 codes…not the DSM IV diagnostic codes”
The diagnositic ICD codes are very closely related to the DSM definitions that they came from and are sometimes defined in terms of the diagnosis. So for the example I used, expressive language disorder, the ICD 9 code is 315.31 which is defined quite simply as “expressive language disorder”. That phrase presumably refers back to the appropriate diagnostic manual, which in this case is likely to be the DSM IV
There is also an ICD 10 code of F80.1 but I don’t know whether the ICD 10 codes are in actual use yet or not. It looks like the F80.1 code clarifies when it can and cannot be used with the code for a pervasive developmental disorder.
However, there is also a billable ICD-9 code for autistic disorder, 299.00, which is a “disorder beginning in childhood marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual.”
Notice the “marked by the presence of markedly abnormal or impaired development in” … “communication”, does that sound like what is being billed for? As in a disruption in expressive communication can be part of autism?
The point is that the communication part of the disorder is defined under 299.00 but if you use that as the diagnostic code, the claim will likely be rejected. Instead providers have to submit under a different code such as 315.31 even though the other diagnosic code (299.00) is more appropriate to the diagnosis.
“Now MJ mentions “acetaphenone” for headache…which is no longer used for headache or as an anticonvulsant in the United States. It was replaced by paraldehyde and chloral hydrate.”
My apologies, I meant acetaminophen. Spell check gets me every time.
December 26th, 2011 at 8:49 pm
MJ states:
Whether something is “allowed” under the DSM IV (or DSM V) is pretty much irrelevant to this discussion. The DSM is a committee-driven compromise attempt to provide structure where none existed before (before DSM I, that is).
The point is that insurance companies - and many psychiatrists and psychologists - realise that the diagnosis of “autism” does not adequately specify the condition of the person with that diagnosis. The DSM IV states that a patient can’t be diagnosed with “expressive language disorder” and “PDD/autism” because the former is implied in the latter. However, not every person with PDD/autism will benefit from speech therapy (which, from my experience, is better at treating dysfluency and dysarthria than it is at treating an inability to use language).
MJ also asks which diagnostic code is used to prescribe pharmaceuticals, since none are “autism-specific”. My answer: beats me. I don’t know which code was used to justify the medications for my child, nor am I particularly concerned. It may stike some people as dishonest or “gaming the system”, but it is the logical outcome when a diagnosis (e.g. autism) becomes so broad and vague that it cannot be used to predict what treatments and therapies will be helpful.
If my physician diagnoses me with “essential hypertension”, “polycystic ovaries” or “emphysema” (I have none of those conditions), another person reading these diagnoses would be able to get a fairly accurate image of my medical situation and could predict which medications and treatments would likely be of help and which would likely be of no use. In the case of “autism” or “PDD”, there is as much (or more) difference between people with that diagnosis as there is between people with the “autism/PDD” label and the general population.
The reason the ICD 9 code of 299.0 is rejected as justification for treatment is not because it is a “black spot” that is a bar to all reimbursement (as so many parents and “alternative” practitioners have told me); it’s because it doesn’t adequately describe the patient’s condition or medical needs.
The simplest solution to this problem would be to consider “autism” as a broad-brush category and require that other diagnoses be used to describe aspects of the individual’s autism that are being addressed by medical therapy. In other words, pretty much what is being done today, despite what the DSM IV says.
Is this optimal? Probably not. On the other hand, very little in life is “optimal” - even evolution doesn’t strive for the “best” solution, just “good enough”.
Again, my point isn’t that insurance companies are benevolent and generous or that the current system doesn’t “bend” some of the (artificial) “rules” of diagnosis. My point is that the “autism” diagnosis is not a bar to insurance reimbursement. The only bars (apart from individual limits of coverage, which apply regardless of diagnosis) are unproven treatments (including, sad to say, ABA) and lazy (or incompetent) practitioners.
Prometheus
December 27th, 2011 at 10:09 am
Prometheus,
One more question for you, if I may. Do you know what diagnostic codes are used in states that have mandated coverage for autism? If what you are saying is true, that the other diagnostic codes are superior because they identify specific rather than vague problems, then the providers should still stick with the other codes even after they could use 299.
December 27th, 2011 at 2:53 pm
I don’t know about that optimistic belief that health insurance co’s are good about paying claims.
I was working for a big company in California, and I had group health insurance from them, not an HMO. This was about 1985, maybe things have improved.
After awhile I noticed that they were only paying PART of a lot of the bills I was sending to them, on the basis that the cost was more than “reasonable and customary”. These were bills for totally ordinary medical procedures.
So I started appealing. They had a couple stages of appeals in the insurance co., and they were all denied.
I called about 4 different local providers for one of the procedures, got their charges in writing, which were all a lot more than the insurance co’s “reasonable and customary”, and mailed this to the insurance co. Still denied.
Finally I found out that the AMA had an insurance review board. Once I complained to the AMA, the insurance co. paid up.
I’d like to trust insurance co’s to do what they’re supposed to do, but this company was using the “reasonable and customary” trick to trim down their claims.
December 27th, 2011 at 5:59 pm
My son received a diagnosis of oral motor dyspraxia in 1990, functional dysarthria and dysphasia were added later. The neurologist assured me that he was not autistic, but remember this was before the DSM-IV. (even when he exhibited stim behaviors and tics, the neurologist would not put the “autism” label on him!)
Not long before he was diagnosed the state (with the urging of educators, and a child neurologist at the same clinic my son was seen) had legislated that insurance companies cover nueurodevelopmental therapies for children up to age seven. So my son’s therapies were covered (and the child neurologist essentially prescribed them). At that time there were no cost of visit limits on the treatments, since it was all fairly new and the demand was not as high (it was also before the Internets).
When my son turned seven, there was no way to get insurance coverage due to the law being specific. Before the law the insurances companies typically refused to cover speech and OT/PT because of “pre-existing” conditions clauses. So we paid for his private speech therapy while he was in middle school.
December 27th, 2011 at 7:43 pm
MJ asks:
Beats me - I don’t live in one of those states.
As I mentioned previously, the “autism mandates” may not come to much unless the law also specifies which treatments are justified by the “autism” diagnosis. If the state law specifies that use of therapy “X” for autism is a mandated part of all health insurance coverage, then practitioners could use the ICD 9 code 299.0 (autism) and the insurance companies would have to reimburse it (to whatever level the insurance policy specifies).
On the other hand, if the state law simply says that insurance companies must provide “coverage for autism”, then little will change, with the possible exception of more coverage for OT/PT and speech therapy - if the insurance commission interprets it that way. The fact remains that no treatment - apart from some amount of speech and occupational therapy - is universally useful in autism. The diagnosis has broadened to the point of being nearly meaningless.
Rather than being bothered by whether or not it is “right” that the 299.0 (autism) ICD 9 code cannot be used to justify treatment, how about recognising the reality that “autism” (ICD 9 299.0) isn’t a very descriptive or specific diagnosis? And as long as insurance companies require that treatment be justified before they’ll pay for it, 299.0 (autism) isn’t going to work. I try to keep my focus on what is, not what should be, and this is the way things work right now.
Laura comments:
Neither do I, since nobody (including me) has said that here. What I’ve said is that the oft-repeated claim that insurance companies won’t cover any autism-related problem is simply false. They won’t (generally) pay for treatments justified only by a diagnosis of “autism”, primarily because that diagnosis has no specific treatments.
Ah, yes - “reasonable and customary”, one of the favorite weasel phrases of insurance adjusters. Of course, if you are seeing a practitioner whose prices are significantly above the local norm (like so many “alternative” practitioners in my area), expect to get burned by this clause on a regular basis.
As much as I’d like to, I don’t have the time or patience to moderate a health insurance complaint ‘blog, so I’ll repeat myself:
I’m not saying that insurance companies are benevolent or generous or that they don’t use any and every trick in the book to avoid paying, including (as some companies do) having unreasonably low “reasonable and customary” schedules and trying to bury you in paperwork and legal wrangling.
That all being true, my original point still holds - the “autism” diagnosis is not useful for justifying insurance reimbursement but that does not mean that people with an “autism” diagnosis cannot get treatments paid for by insurance, if those treatments are justified by the manifestations of their autism.
Of course - and does this really need to be said? - insurance companies will pay no more than they are contractually required to, no matter how nice their agent was when you bought the policy. If your health insurance policy states that they will pay for a maximum of twelve OT/PT visits in a year, don’t expect for them to pay for thirteen.
Prometheus
December 28th, 2011 at 7:35 am
Prometheus,
You said “if the practitioner knows the basics about insurance billing, there is no problem getting appropriate care paid for.”
That was what seemed perhaps overly optimistic to me.
My awful experience was a long time ago. The insurance co underpaid with many different providers. The providers didn’t have especially high fees.
Maybe, insurance is better regulated now. I’d love it if that were true, since this experience caused me in me a profound dread of insurance and bureaucracies in general!
Laura
December 28th, 2011 at 8:20 am
Also, a reasonable parent’s idea of what is appropriate care might not coincide with the insurance co.’s idea.
You say that in your experience, most of the parents who were having trouble getting reimbursed by insurance, were trying to get reimbursed for unreasonable charges or for questionable care.
That doesn’t imply that a reasonable parent who’s seeking appropriate care, will find it easy to get reimbursed. Instead, it’s a comment on how much quackery there is in autism care. Sure, an unreasonable parent who believes in quackery could have difficulties getting reimbursed.
You say that you haven’t personally had a problem. But a reasonable parent’s idea of what’s appropriate might be different from yours. And they might not have as good an insurance co.
December 28th, 2011 at 8:52 am
ps Perhaps it’s the harsh reality that there’s nothing much you can do to help with autism, and insurance co’s end up paying for desperate parents trying to feel better by doing SOMETHING.
December 28th, 2011 at 1:53 pm
Sometimes people who make insurance coverage policies make silly decisions. Twenty years ago I found out that they stopped covering well-child checkups at age three or four. I called this about it and asked why they did not cover the four year old vaccines required for school, and got a “We just don’t.”
Then someone realized that this was a bad policy (especially with the increase of hospital admissions when our county was having a pertussis outbreak), and they now cover well-child checkups through age 18. Some actuary must have finally done the numbers and realized that prevention actually costs less. So while they did not cover my oldest son’s vaccines for school, they covered them for his brother who was two years younger.
December 29th, 2011 at 3:39 am
Being an “older mommy” (children born in 1970 and 1976), I remember when no “well baby” check-ups and no vaccines were covered. As Chris mentions, the insurance companies realized that coverage for “well baby”, older children yearly check-ups and vaccines are important preventive care.
When disabled children are in school programs you can insist and secure speech, OT and PT therapies…even if you have to threaten an administrative hearing. You need to have “documentation” from a specialist/physician…or several specialists. (anecdotal) When I had “difficulties” securing PT from the school district where my son resided in an ICF/MR (Intermediate Care Facility for the Mentally Retarded), I brought in well-worded letters from his two specialists (pediatric orthopedist and pediatric physiatrist). I also “knew” that all costs associated with his education…including PT…were billed back to the school district where I resided. I got letters from my district’s school superintendent and the director of the Committee on the Handicapped assuring “me” that my school district would be paying the costs of his schooling and needed ancillary services.
I also notified in writing the other school district that I was bringing a recording device to the IEP meeting…in preparation for an administrative hearing. Guess what…I got the PT 2X weekly during that school year and throughout the remainder of his school years until age 21.
March 7th, 2012 at 6:01 pm
I actually know somebody that this describes well. He is legally blind, and has been since birth; it’s a genetic condition that his mother also has. Insurance would not pay to correct it, although there is a surgery which can restore some vision. Then, in the past few years, he began losing what little vision he had. He began using a cane even in relatively familiar areas. He was diagnosed with cataracts, and the lovely thing about that is that the insurance *would* pay for that — which is precisely the surgery that was needed all along to give him some useful vision. He’s still legally blind, but he has better vision now than he’s ever had before. It’s all about having the right justification to get it covered.
Autism is a preexisting condition, and while it can be quite disabling, there aren’t really any treatments for it. There are treatments to relieve many of the symptoms and comorbid conditions that can arise. Speech delays benefit from speech therapy, for instance, and attention problems may benefit from stimulant medication. These need to be billed correctly. It’s not fraud at all; it’s simply stating what the indication for the treatment is.
Very few will cover things like ABA, and not merely because it’s still considered experimental by most insurers. At least in the circles where I’ve moved, it’s because it tends to be considered an educational intervention, not a medical one. They don’t pay for tutors to help a slow kid catch up in class, and they don’t pay for ABA either, generally, unless you can manage to bill it as physical therapy.