Autism and insurance issues

[sandellie4]

I was just wanting to half-vent about how difficult paying for therapies for special needs kids is and also ask, Does anyone have any tips for getting coverage? All the treatment for our daughter with the most severe special needs -- OT, speech, social skills group, etc. -- is excluded by our insurance. Of course, school services would be a lot less expensive, but in our area, they stink. We did speech therapy during the school year last year and often the social skills group consisted only of children with unmanageable behavior problems, led by a school counselor that mostly lectured. Then, as the year went on, the school counselor started to miss sessions, always forgetting to call us, of course, so we wasted several trips to the school for no reason. The articulation therapy she was to receive that year never did get off the ground, as the speech therapist was pregnant and ill much of the time (poor thing!). Anyway, we have found that services outside of the school system are actually *working,* and for the first time we our seeing some real improvement. But they are getting to be unaffordable. Do other people just go without? I feel like this is our "window" to help our daughter, that if we don't do it now, and she can't support herself or whatever, that we will look back with a lot of regret that we didn't do all of this. Autism is maybe just for the wealthy, or for those in poverty, rather than the hapless middle class?

 

Sandy

[newbie]

I won't start on my rant and not getting services for middle class. What I have done for my niece is; I went along with the schools little plan, which means I used their suggested services. Than at the end, I had her retested and proved services were not provided, than outsourcing can be done.

 

My niece had a school provided VT that was horrible. She got nowhere. So when they were through, she was tested, no progress. In the interim, I researched other VT and got them to pay for the one I chose. I also do this with IEP. Every yr. I have her retested, than before IEP I research and have them implement all new strategies. Whether it be AT, OT Speech. It varies. They absolutely hate me at IEP's.

 

We are now battling Social Security. It is just an uphill climb.

 

Hope helps,

JEt

[Niffercoo]

Yeah, don't get me started about autism, insurance, and how to pay for it all when you're middle class. Our insurance policy (through dh's work, a small family-owned business) specifically states that it will not pay for anything related to a Pervasive Developmental Disorder. But they take it to the extreme! My son has one leg that is slightly shorter than the other, causing scoliosis. He sees an orthopedist twice a year to monitor it and make sure the difference doesn't become any greater. Every time he goes, insurance denies it under the PDD thing. I have to call the insurance company and sit on hold so I can talk to someone who will override it. One leg longer than the other is NOT related to his Aspergers!

 

And last winter I thought my youngest had strep. We went in for a test, and it came back negative. Insurance denied the office visit because "we do not pay for any treatment related to a Pervasive Developmental Disorder." So yet again I have to call the insurance company and remind them that strep isn't something only autistic children get. UGH!

 

Dh is currently job hunting and better insurance is one of our biggest desires. When the kids were first diagnosed, we paid for all of the ST, OT, testing, etc. out of pocket. I don't know how many years we will be paying that off!

[newbie]

Yeah, don't get me started about autism, insurance, and how to pay for it all when you're middle class. Our insurance policy (through dh's work, a small family-owned business) specifically states that it will not pay for anything related to a Pervasive Developmental Disorder. But they take it to the extreme! My son has one leg that is slightly shorter than the other, causing scoliosis. He sees an orthopedist twice a year to monitor it and make sure the difference doesn't become any greater. Every time he goes, insurance denies it under the PDD thing. I have to call the insurance company and sit on hold so I can talk to someone who will override it. One leg longer than the other is NOT related to his Aspergers!

 

And last winter I thought my youngest had strep. We went in for a test, and it came back negative. Insurance denied the office visit because "we do not pay for any treatment related to a Pervasive Developmental Disorder." So yet again I have to call the insurance company and remind them that strep isn't something only autistic children get. UGH!

 

Dh is currently job hunting and better insurance is one of our biggest desires. When the kids were first diagnosed, we paid for all of the ST, OT, testing, etc. out of pocket. I don't know how many years we will be paying that off!

 

That is truly a sneaky way of not covering your child. I hope you get new insurance and it runs smoothly.

 

Jet

[sandellie4]

Our insurance, too, denies anything and everything -- from runny noses to broken toes -- as part of its exclusion of autism. Why does the policy cover infertility treatments and chiropractors, etc., and take all of our premium payments, but offer us nothing for a major disability? (Not that the other things aren't important, just that autism should be covered TOO....) Makes me want to just bail out of the system. Everytime we need something...oops...nothing for anyone in your income bracket, lady...not even homeschool is deductible, which is expensive, as I'm sure most, if not all, of you know. But the government takes gobs out of our paychecks for the schools and other services that don't meet our needs. Sheesh, I feel like, what's the point in all this rushing around playing this game? :glare:

 

Thanks for listening!

 

Sandy

[gamommy]

I can only imagine how frustrating this can be. I wish that more people were informed about the limitations of most health insurance policies. Our oldest has a severe hearing impairment and that has also been excluded from all the policies we've ever had. That means we shell out $7-8K each five years or so for hearing aids, not to mention hearing tests, repairs, etc. It is a huge burden!

 

So I understand your struggle. Perhaps if more people were informed there might be a push for progress.

[Twinmom]

I won't start on my rant and not getting services for middle class. What I have done for my niece is; I went along with the schools little plan, which means I used their suggested services. Than at the end, I had her retested and proved services were not provided, than outsourcing can be done.

 

My niece had a school provided VT that was horrible. She got nowhere. So when they were through, she was tested, no progress. In the interim, I researched other VT and got them to pay for the one I chose. I also do this with IEP. Every yr. I have her retested, than before IEP I research and have them implement all new strategies. Whether it be AT, OT Speech. It varies. They absolutely hate me at IEP's.

 

We are now battling Social Security. It is just an uphill climb.

 

Hope helps,

JEt

 

Hey, that's pretty impressive work there! An inspiration to those of us who fight insurance constantly! Really, I'm impressed. Good work.

 

My DS7 doesn't have autism, but he does have a rare genetic disorder that is extremely expensive to treat. He has ectodermal dysplasia (see www.nfed.org), which is a skin disorder that completely screws up his mouth and teeth, to the tune of nearly $100K in tx before he's 18. 95% is completely uncovered...guess why? Because insurance only fixes "sound, naturally occurring teeth." His are neither sound (they are conical) or naturally occurring (he'll have only 7 adult teeth)! So, if my other DSs knocks out all their teeth playing football, insurance will pay. However, if my DS7's jaw breaks from the stress of chewing without nerves, bone structure or teeth, forget about it! He wasn't born with teeth, obviously he doesn't need them, right? :glare:

 

Insurance s*cks, really it does.

[dtsmamtj]

We are having the same problem. So far, my son's CAPD issue is primary and his PDD is secondary. Once this is the other way around (should that be the case) we won't be getting any coverage for his therapy. I am trying to learn as much as possible from his therapist to prepare for that day. The only reason we get coverage now is because this clinic is an "arm" of the hospital and not considered a "private" office. UGH!!!

 

 

T

[sandellie4]

Wow, I didn't realize how pervasive this is, whether involving autism or something else. Basically, our insurance doesn't cover anything that didn't exist in the first place. The schools are supposed to do educational things and the insurance sees itself as a business that pays to help restore original function. So, if your child has a language delay, it's not covered because there's no restoration -- your child's language delay is developmental and not something to be "restored." So much of this needed therapy invovles "windows of opportunity" when it comes to children. I guess the insurance companies know that parents will eventually just pay the cost themselves, as fighting the insurance company in many cases could cause the loss of an opportunity that cannot be regained in adulthood. We pay almost $2,000 a month, but if anything happens to any of us, even if the services are covered, we'd have to pay deductibles and 30 percent of the cost. There's no way we'd be able to do this for anything major. As dh and I get older, I've started to really worry. My husband got his colonoscopy screening, the routine one you're supposed to get at age 50, but it wasn't covered at the "screening" level. Because he mentioned that his father had polyps (his father is in his 80s), it was considered a "diagnostic" test. Less than half the cost was covered and the anethsia was considered "elective"! Sandy

[Holly IN]

for us our child has to be diagnosed with ASD or PDD in order to get any services through them. Also I have turn in a treatment plan to the insurance company per Indiana's Autism mandate. It is very hard to get proper diagnoses here in INdiana but very easy to get insurance coverage once you get the diagnoses hence why we fought so hard to get her diagnosed so she can get services through insurance company.

 

It looks like it is ether very hard to get diagnosed in a state with madate/with easy insurance coverage OR easy to get diagnosed but very hard to get coverage. I am seeing alot of both of these situations.

Holly

[summer]

We have had to basically go without.

 

I really would like to see all of us band together and do something. I think most people in this country, especially as they head to Mexico for missionary work and raise tons of money for 3rd world countries, really truely believe that all of the US is provided for and just a bunch of spoiled people. Reality is, children with disabilities cannot get services unless, as you put it, they are seriously poor or seriously rich.

[newbie]

What is worse is when all these non profit orgs. don't help. They dont even answer their phones, than they pass you off to someone else.

 

We are at transition stage, and help is basically nil unless IQ is below 69.

 

Jet

[sandellie4]

You have checked into the issue of assistance for "adaptability" issues, right? You probably have, I know, but I thought for years it was low IQ or nothing, but only recently discovered that we could apply based on safety issues, etc. (self-care, leaving the stove on while cooking, etc.). Sandy

[newbie]

Sandy,

Could you pm me on those issues, I could you those for her SSI appeals case.

 

Thanks,

Jet

[newbie]

You have checked into the issue of assistance for "adaptability" issues, right? You probably have, I know, but I thought for years it was low IQ or nothing, but only recently discovered that we could apply based on safety issues, etc. (self-care, leaving the stove on while cooking, etc.). Sandy

 

Sandy,

 

I talked to an atty. today, this is third, other two said no. I was trying to remember what you said. If you have any docs or codes I could look up that would be great.

 

Jet

[ClassicMom]

Maybe if someone figures out a way to get Autism coded for payment, they can post it here? We are all probably drowning in debt! I know we are.

 

We have two handicapped sons. One with Autism/ADHD, One with severe MR,CP,seizure disorder and DD. We have a daughter with ADD and I have severe migraines. Our meds co-pay alone is $500.00/ month. :confused: