New with Insurance Question

iVillage Member
Registered: 03-20-2004
New with Insurance Question
Thu, 05-13-2004 - 12:35am
Hi, my name is Erin and I have a son with suspected asperger's. We found this out a year ago when he was 5. He is in a special ed program at school but was mainstreamed 100% and they work on his IEP goals in the regular classroom.

My dilemma is that I have never had him officially diagnosed. I was warned not to; that it would become a pre-existing condition on our insurance(DH may change jobs in a year,too) and that his medical needs are no different from any other child.

Well, I followed this advice because if the medical people had nothing to offer me then why go? He is getting help at school and we have had a positive experience without a diagnosis. However, I have heard that the school can get more money toward programs such as his if he has the official diagnosis.

Today, though, I took him to see his podiatrist that he has been seeing for 3 years and the guy was just baffled. Despite everything he has done, my son still walks on his toes and his gastrocnemus muscles are tight and other problems due to walking on his toes. I finally asked him if he had ever heard of asperger's. When I mentioned the sensory issues he said that explained a lot and that he was about to suggest that we see a neurologist. He's also been toying with the idea of surgery to lengthen his heel cords, but after talking about the asperger's, he said that it might do no good and if he continued to walk on his toes the results of the surgery would just go back to tight heel cords anyway. I don't want to have needless surgery and by not disclosing info to doctors am I compromising my son's care? I'm not trying to deceive doctors and if an insurance questionnaire ever asked me I would tell them the truth.

I'm just wondering what your experiences have been. Has it affected your insurance coverage? Has it helped your school to have an official diagnosis?(it was an education agency connected to our school district that warned me not to). Any help would be greatly appreciated.



iVillage Member
Registered: 03-28-2003
Thu, 05-13-2004 - 8:12am
Erin, it is very nice to "meet" you, and welcome to our corner of the net!

As to your dilemma, I just wanted to point out to you that a lot of kiddo's without an autism spectrum disorder have sensory issues. Also, a lot of kiddo's in general, toe walk. And, I'm sure if your son has an IEP, the school is getting the extra federal funding, but I could be wrong! Even if you go to the neurologist, unless you are going for a diagnosis, I wouldn't worry too much. You could talk to the neurologist about it, stating your concerns and ask him if he would need to classify your son as having an ASD in order to address his issues with his legs, then decide if it is worth pursuing.

I know another board member has said her insurance doesn't cover things related to ASD's (Kathy, are you out there-comments??) I've also read/heard that there are laws to prevent this type of thing. You could contact your state's insurance commission and see what the law is in your state. I think, for an insurance company not to cover things related to autism, there must be a similar benefit system in that state, but I'm not sure.

My child isn't on the spectrum (though he is nonsocial, like a lot of Aspies), but my insurance has covered all his evaluations and private therapies (that they will cover, so not all), like Occupational Therapy for his SID, and Audiology therapy for his Central Auditory Processing Disorder. As well as his evaluations and tests/measurements to see if he was on the spectrum. I've just submitted them as they come and haven't had any problems. I know my insurance will not cover learning disabilities.

It will be interesting to see what other board members have to say!



iVillage Member
Registered: 05-13-2003
Thu, 05-13-2004 - 8:59am
Hi Erin,

First let me say welcome. This is a great board with many helpful and kind members.

Our DD was diagnosed in March with Asperger's. Now, I tried to go through our insurance to get this evaluation, but the places that our insurance supported were not places I wanted to go. They wanted me to take her to a behavioral health place but even told me that they didn't know how much help they'd be because they dealt primary with older children. So, I asked around and was given the name of a place that was highly recommended. Our insurance would not cover this psychologist because he wasn't a member of our insurance. So, we paid for the appt. out of pocket. Here is what we were told we could do as far as coverage for our DD goes. In PA, there is something called the Loop Hole Law which states that "Any child is able to obtain a medical access card based on a disability". So, even though we have insurance...this will cover anything our insurance won't. That INCLUDES any special treatment for our DD's legs, feet, etc. Our DD's feet turn in when she walks and have since she started walking. I've seen several pediatricians about it who have checked out the muscles and told me that she will grow out of it. HOWEVER, she has been working with an occupational therapist at school who seems to believe that this problem can and should be addressed. So, we are off to a physical therapist today. I've been told by the OT that any special shoes she may need, or treatments that our insurance won't cover CAN be covered by this ACCESS card that we are applying for.

You may want to call your local counties local welfare office and inquire about that loop hole law. We will get the money back from the psychological evaluation she had done, once the application is accepted. Had she not been diagnosed, we would have just lost that money, but for us it was worth it to find out either way. Our school would NOT help her without this dx. So, I suppose it is a judgement call on your part. There are a lot of programs you may be able to get your child in though if he is given the dx...such as summer camps, social help groups, etc.

I hope that helps a little,

Courtney ~~~~Mommy to Paige (7) dx'd with Aspergers and Gracie (3)~~~

iVillage Member
Registered: 06-25-2003
Thu, 05-13-2004 - 10:09am


welcome :)

I am no expert, but I know that


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iVillage Member
Registered: 03-20-2004
Thu, 05-13-2004 - 12:27pm
Thanks so much for your kind, thoughtful and quick responses. I am going to check into your suggestions. It is kind people like yourselves that have made this situation positive. I am pregnant with #4 right now, but I have told many pregnant people on another message board that this has actually been a blessing and that I have learned a level of mothering that I never would have known and I have had wonderful people impact my life that I never would have met if everything had been smooth sailing. I have had to leave that message board because I was so disturbed by the responses of the women to "suspected" problems that were encountered in regular pregnancy testing. It scares me as to how they will handle parenting when life doesn't turn out exactly the way they plan it. I just can't be a part of something that treats children like my son or any other child born with challenges as if they are a mistake. I know this is not a debate board so I will leave it at that and I may cry if I think about it more.

Thanks so much. I am deeply grateful,


Avatar for mamabearof2
iVillage Member
Registered: 08-30-2003
Thu, 05-13-2004 - 7:05pm
Welcome Erin.

When we had DS evaluated we paid our copay and that was it. I haven't received a bill yet and it has been a few years.

Again welcome and good luck!


Linda5Fburgerbear.jpg image by suzyqe1            &nb

iVillage Member
Registered: 02-24-2004
Thu, 05-13-2004 - 8:06pm
Hi Erin,

I don't have much advice on this subject, SORRY!! But, I did want to say, WELCOME!! My name is Michelle and I have 5yr old, Nathan who is HFA. He was just dx'd, so we're just getting started with appts. and such. So I'll see what our insurance covers. I'm not worrying about it too much, because whatever they don't pay, we WILL. (Of course, right now we're not looking at surgery or anything that extensive right now)

Good luck and lots of hugs!


iVillage Member
Registered: 05-04-2004
Fri, 06-04-2004 - 7:44pm
My twin sons had an evaulation for autism, even though I had a referral, I received an Explanation of Benefits from the insurance company saying they didn't cover behavioral disorders. I was livid because it reminded me of the refridgerator mom B.S.... calling autism a behavioral disorder is basically like saying that it is a "fixable, parenting issue." I was shocked they still even had this message in their computer system. I called the Autism Research Institute in San Diego and acutally talked to Dr. Bernard Rimland who said that there was actually a supreme court case (can't recall the name, maybe someone knows???) that said that autism was a medical condition. I wrote to the Medical Director of Aetna Health Plans, threatened legal action and told them they better update their computer system because if I ever saw that message again I would sue their slanderous butts... I said that as a mother of children with autism, calling my son's condition behavioral was basically calling it my fault.. That they might as well start denying wheelchairs to children who were paralyzed because their mothers weren't encouraging them to walk enough. I copied the letter to a bunch of autism foundations as well.

In any event, got my apology letter and haven't had much problem getting claims paid.

Autism is a medical condition and your insurance company should cover approved therapy options. For example, if your insurance company has an occupational therapy benefit, you should be able to get OT benefits. Most insurance plans don't have a speech benefit, or only cover speech if it is the result of a injury since birth. Since my son's were born three months prematurely I've tried to argue that that is a birth related injury but haven't been successful.

The only exceptions to coverage are:

1) Pre-existing condition- If you knew about the diagnosis before the insurance started and didn't disclose it prior or within the first "x" days (30 to 90 usually and is designated by the insurer in your enrollment information). This should not apply to you because it is a pre-existing condition only if you knew about it. Since you haven't even officially had your son diagnosed yet, you really don't know if he's on the spectrum or not.. just make sure you don't get the diagnosis until after the pre-existing condition waiting period has passed.

2) Specific Insurance Exclusions- This is a bigger issue.. insurance plans are allowed to deny coverage for anything that they say up front, they intend to deny coverage for...In your enrollment or benefit information they can spell out, we do not cover Autism, or Aids or whatever. Usually, it is included with the hair replacement, cosmetic surgery, etc stuff. This is legally allowable because sometimes they just take things that they think will be too expensive off the list. Morally, ethically, medically etc.. it is a scumbag move, but the company often agrees to some blanket denials to enable them to reduce their rates.

Why is getting insurance coverage a good idea? You may be able to get some occupational therapy to supplement whatever you're getting from the school.

Why it may be a bad idea? Kind of just a timing issue.. once you pull the trigger and get the diagnosis, then it might become a pre-existing condition. That means that if you think you/your husband is going to change jobs in the near future, you may want to wait and pull the trigger at the new job - then it's not a pre-existing condition. BUT if not, some therapy now, might be more beneficial then worrying about therapy options later because early intervention is always the best option.

SO... sorry for the novel, but bottom line as long as you are beyond your pre-existing condition wait period- and as long as your benefit information doesn't specifically include autism .. then you should be covered.

iVillage Member
Registered: 04-13-2004
Sat, 06-05-2004 - 8:05pm
My son had his initial eval with a group at a children rehab center affiliated with a local childrens hosp. When the paperwork went to the insurance company they called me and said if they were going to accept the diagnosis of ASD I had to have him evaluated with a in network psychologist. So we went and recieved the same diagnosis...Aspergers. When my DH was laid off and he got him new job the insurance company didn't consider it a pre exsisting condition. We also applied for medicaid waivered services through the state and they have given him medicaid as a secondary insurance to what we have on him already. He will always have it unless he is somehow "cured" I recommend you contact your local social services office to find out what they have but he will have to have a diagnosis first.
iVillage Member
Registered: 03-26-2003
Mon, 06-07-2004 - 2:12pm
I need to look down at these other folders more often.

I had a couple thoughts. First, sometimes when the insurance is a bit funny about terminology my doctors have been good at wording referrals medically so it will be covered. For instance, they may quote symptoms and say to rule out neurological abnormalities or something like that. Always truthful, but the doctors know how things need to be worded. I have had a couple of things that were a bit difficult in covering but usually it goes ok. Neurological ebals are good to make sure to rule out any other neurological problems and to get proper medical treament.

Next, if you don't want to go the way of insurance, look into research studies. Often research studies will have testing as part of the study and you can get the results and perhaps even a diagnosis there for free. For instance, many studies will say "children ages _ to _ with a diagnosis of Asperger's or there is concern of asperger's". If you call the study they will tell you if testing is part of the study and what results you can get. I would call any for kids with AS or ASD's in your area and question them. Often there is even compensation for your time. I have done those a couple times because we were able to get indepth testing and information without bothering with insurance and it remained completely private.

Lastly, I do believe that the pre-existing condition thing is no longer applicable. I was concerned because I was pregnant with my youngest when we moved cross country and my DH changed jobs. I questioned it then and was told there was a law making that a non issue. My dd had a diagnosis prior to my move along with my pregnancy and it has never been a problem for us. We have changed again since then. There is also the possibility that he could be covered with medicaid as well to cover his medical expenses if he has a disability.



iVillage Member
Registered: 03-26-2003
Wed, 06-09-2004 - 5:40am

Hi Erin, and welcome to the board.

I haven't had any problems per-se' with my insurance companies in regarsd to pre-existing conditions. it's more about caps, maximums, and exclisions in my expirience. But eventhen all they can do is say that they won't cover an eval. They can't deny your DS his regular medical coverage, under any circumstances.

I did however have a funny mix up once. I was sent a letter saying they wouldn't pay for one of my youngest DD's regular check-ups and told me to reference code yada yada under section such-n-such. When I looked it up it was the code about undisclosed pre-existing conditions. So I replied with a letter that pointed out that the appointment in question was a regular well-baby check-up and immunization. I asked them how it was possible that they didn't know she was a baby or that she was going to get immunizations since they were the same company that covered her birth and subsequent well-baby check-ups. I asked them what the pre-existing condition was... being a baby? Needing immunizations? Little to say I recieved a letter stating their appology and that the services rendered were being taken care of.

Anyway, welcome to the board, feel free to help yourself to the free cyber cookies. :)