Insurance woes

I've noticed that the vast majority of people who've participated in the poll about how much treatment is costing have said "Don't even ask." That got me wondering about how much problems with insurance coverage lead to inadequate treatment. In our own case, our son's pediatrician referred him for evaluation when he was about 6 years old. The insurance company denied the referral, on the grounds that it was "an experimental procedure," and they stuck to that no matter how I appealed. That delayed our son's diagnosis and lost him precious intervention time. It also meant that he was in the school system without a diagnosis or an IEP, but exhibited many of the problem behaviors common to young kids who are on the spectrum. Absent a proper diagnosis, the school wanted to put our son in a program for emotionally disturbed children. I wound up homeschooling for a few years to prevent that from happening.

Another problem cropped up when our insurance company required the therapist to submit a new treatment plan and re-justify the need for therapy in the first place after every eight sessions. That became so onerous that the clinic just stopped accepting our insurance--which sent our out-of-pocket costs way up.

Even when insurance covers costs, it's with a larger than normal co-pay (40% in our case) because autism is considered a mental health issue. And a lot of insurance plans just deny coverage for autism.

Then there's the issue of what will happen to our son's medical coverage once he ages out of our insurance coverage. That one keeps me up nights. I know government coverage is possibly an option, but he's very high functioning intellectually. It's going to be hard to get him approved I think.

It seems that time after time these kids--especially the ones who are higher functioning--fall through the cracks. The kids pay in the form of limited treatment options, and the parents pay both literally and emotionally. It's so frustrating.

Sue

Sue, this is such an excellent topic. I think many families are struggling with this issue in all its many aspects.

One of our staff members has been working on an article about insurance issues, so I hope we will have that available soon.

Autism Speaks and other advocacy organizations are also working hard on the issue, and I hope that inroads they make will benefit all families facing insurance woes. The Autism Speaks "Government Initiatives" page, for example, describes Autism Insurance Bills being introduced in Florida, Connecticut, Illinois, Mississippi, and Arizona:

http://www.autismspeaks.org/government_affairs/index.php

We are doing better now that we have a state funded medical assistance plan in addition to our primary insurance. We do pay a premium. I am a Social Worker and it was difficult for me to navigate our state and county to get this support and I do it for clients everyday. I dont know how people do it.

I've been frustrated with our insurance ever since my son turned 3. He received Birth to Three Services up until 3 and they billed our insurance company and it was covered but out of network but then he turned 3 and Birth to 3 services ended and he started Early Childhood Classes at the public school and insurance was done. He was diagnosed in Oct and Birth to 3 ended in Nov, the diagnosis recommended Speech therapy and at least 25 hours of therapy a week (EC is 10/wk). I sent all his paperwork to insurance, what tests he had, findings and they denied it because their Speech adviser who never even seen my child said no it's a developmental delay. I asked how old does he have to be before it's not considered developmental. I've used my appeals and still nothing. Now that summer is here they will cover over the summer because there usually is no school. I then learned they covered ABA Therapy and started another claim for that because we are currently paying it ourselves til a stat funded program takes over in a year, but just got notified that that also was denied because it is not medically necessary. I'm so angry and frustrated with our insurance company I could spit.

I too can relate to the problem with Insurance. My son was diagnosed with high functioning autism this last November he will be 3 this May. I paid thousands of dollars to have him evaluated due to insurance not paying. My main problem with insurance now is right before my sons second birthday he decided to stop eating solid food. He was even hospitalized for dehydation. We were able to convince him to drink pediasure and that is what he has consumed ever since. We had him evaluated and after not only his pediatrician but also doctors who specialize in pediatric feeding disorders my sons whole team of therapists and my family all agreed he needs Intensive feeding therapy. The one place in my state that has the therapy he needs is not in my insurance and my insurance declared it not medically neccesary and that he can live off pediasure. I find it unbelievable that they will not pay for therapy but in the end may have to pay for a feeding tube and all the costs with having that. Insurance needs to recognize what is medically neccesary.

Wisconsin had a bill that was trying to be passed for insurance companies (not self funded ones) to cover costs for therapies for autism, it passed one dept. and was shot down by the other. Next time it can be brought up again..............2009.

Can I ever relate! There are actually several states that have passed mandates requiring insurance companies to cover ABA and other autism treatments. But as far as I could find none of them address the health needs of adults with ASD. We have been paying for all of our daughter's therapies and treatments on our own, forgoing what we cannot afford and hoping we've selected the ones that will help her most, and after hanging in this long, we're finding that there's nothing for adults that doesn't involve years and years on waiting lists. And then, who knows whether our daughter will even qualify? She has Asperger's so her IQ is fine but if she's crossing the street and has to look three ways at the intersection instead of two, she runs out into the street "to get it over with" because she doesn't know how to look THREE ways.

And don't even get me started on how convoluted all of these medical/health assistance programs are. What are mere mortals supposed to do? Hire someone to help us navigate through this system? At our own expense, I'm sure!