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Old 05-08-2012, 09:41 AM   #1
triton77
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Genetic Testing and Ins??

Does anyone know if knowing that your DD or DS has a genetic syndrome hurts your chances at getting insurance? Does knowing that they have a genetic syndrome help for services at school or anywhere else? My DS 7 has a cleft lip and palate and cognitive disability (low IQ) and has pretty severe ADHD. He was tested shortly after birth in Korea(he's adopted) for a genetic syndrome but came back as not having any. Well now genetics(part of the cleft team)wants him tested for Fragile X. I'm kinda dragging my feet cause I'm afraid that if it comes back that he has a syndrome that his and our chances at getting health insurance in the future will be none. We own a small family business and insurance is always a pain we are in the process of changing companies again. If we find out that he has something are insurance company's going to run the other way? Right now we don't know that he has anything so we don't put anything down other than ADHD.
Now the flip side of the coin does knowing help in services anywhere? He already gets ST, OT, PT, and is in the CD room at school so we are covered now as far as services.
We don't qualify for any free services due to income we paid for birth-to-three services thru our county when he was younger due to income.
We need health insurance and can't go with out I'm afraid that knowing will make us uninsurable.
Any suggestion's??
Thanks,

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Old 05-08-2012, 10:27 AM   #2
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Re: Genetic Testing and Ins??

Okay, so technically until he is 19, pre-existing conditions cannot be used to deny health insurance because of the Affordable Health Care Act (http://www.healthcare.gov/law/featur...ons/index.html). However, I think they can make it more expensive.

In terms of education, having that diagnosis shouldn't affect much since he is already receiving the services that he may need.
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Old 05-08-2012, 12:53 PM   #3
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Re: Genetic Testing and Ins??

It will not help at all for school services. In our state, a medical diagnosis alone does not have any bearing on services, but rather the impact that the medical diagnosis is presenting with school function.

I honestly don't know about being rejected by insurance. However, there is a small chance it may help depending on where you live. Some states provide insurance for kids with a medical disability, regardless of family income. It can help cover copays of services and doctors appointments and may even save you money since you won't have to add him to your medical plan. It can be hard to get into this program sometimes, but a genetic difference, from the best of my knowledge, would certainly qualify.
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Old 05-08-2012, 02:45 PM   #4
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Re: Genetic Testing and Ins??

I would call your insurance agent. They will know all the ins and outs of your states health insurance laws as they can vary. They might be able to give you some advise. I would also ask the doctors what benefit there would be to have the diagnosis. Will there be different treatment options?
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Old 05-08-2012, 03:03 PM   #5
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Re: Genetic Testing and Ins??

In our case it does help in both instances, as far as insurance they legally can't deny for that reason but also our daughter qualified for additional state funded insurance that coveres anything our private insurance does not (co-pays, deductibles, prescriptions etc.). Also as far as services and therapies, when she was in early intervention she tested just out of range for qualifying for services (our state recently raised the level of delay needed to qualify drastically due to budget constraints which is a whole other rant) but because she had a "diagnosis" she did qualify to get services. Also, knowing exactly what syndrome she has has helped establish ahead of time which areas she might struggle in and we can fine tune her therapies for that. Also there are certain medical tests that need to be done with her syndrome that we would not have known about had we not had an official diagnosis.
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Old 05-08-2012, 04:08 PM   #6
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Re: Genetic Testing and Ins??

Like pp said I don't think he can be denied but they can make your insurance cost higher. On a positive side if he does have a syndrome he may qualify for medicaid with a spend down less than the cost of insurance.
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Old 05-08-2012, 04:10 PM   #7
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Re: Genetic Testing and Ins??

I can't answer about private insurance since my son hasn't been on private insurance for almost 4 years. As far as helping get on Medicaid it hasn't help us really, what helped us was the medical conditions resulting from the genetic issues not the genetic issue itself. Social security didn't even ask for the original genetic testing they evaluated his disability based on his abilities and medical conditions. My son is 7 years old and it has made zero difference in his IFSP and IEP they again evaluate on his capabilities not his genetic condition.

I avoid Alec ever being off of medicaid. When you have a child that requires tons of medical supplies, doctors, therapists and needs hospital level care on occasion private insurance sucks lemons. Most middle class parents go broke trying to stay on top of medical costs when they are only on private insurance. Really the only hope for families with high medical costs is Medicaid, even better is private insurance with Medicaid as a secondary. You need to work really hard to get him on Medicaid especially once he leaves Early Intervention.

You will never be able to get enough good quality therapy through the public schools. You are going to need the Medicaid to pick up private therapy and many other expenses. The biggest problem I find for us is that school therapists work on school goals while private therapists work towards functioning at home and in the community. School therapists are pitsville when it comes to obtaining adaptive equipment also because their case load is so large you could be waiting a while just to get a letter of medical necessity from them to even start the process while private therapists can usually pump out a medical necessity letter within a weeks time.
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Old 05-09-2012, 01:13 PM   #8
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Re: Genetic Testing and Ins??

If you don't qualify for Medicaid because of income try for a Medicaid weaver. That is what I'm doing right now.
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Old 05-09-2012, 01:14 PM   #9
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Re: Genetic Testing and Ins??

If you don't qualify for Medicaid because of income try for a Medicaid weaver. That is what I'm doing right now.
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Old 05-09-2012, 08:01 PM   #10
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Re: Genetic Testing and Ins??

For services (IEP/IFSP), it can make a difference on what the condition is and your state rules and US regs. My daughter has a genetic disorder (it can be diagnosed without genetic testing) that "puts her at risk for delay and regression". So aside from how she tests, she qualified for EI services, and IEP, and extended school year services. She is delayed and has always been, but not in all areas. She got DT in EI, so that I could get a break of not watching her for a few hours per week.

If you want to PM me about insurance I would be happy to talk to you. DH has worked for health insurance/health insurance contractors for 10 years. Since you have your own company policy (company right? Not individual plan?) your rates are going to be based upon the claims of everyone under the group plan. Depending on your state regulations there may be a cap on how much the premium is increased per year, but that is not increases based on claims.

I am guessing there are services in your area you would qualify for. Unfortunately, since it was a foreign adoption he would not qualify for adoption benefits. There are medicaid waiver programs in every states. Drug companies have programs for reduced or free medication. There are groups that provide equipment.

Have you applied for SSI? Even if he doesn't qualify because of your income, if you get the disability designation it can help.

If you get Medicaid through SSI or a waiver program, then there are other programs to help. Here in IL because ODDs medical costs are so high the state pays our health insurance premium. I have to run the numbers to see if she is expensive enough to stay on it as DH got laid off and our COBRA is $$$.
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