Autism and insurance -desparate situation

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(I also posted this in the genral forum, so sorry for the duplication)

I have 2 boys on the spectrum, one with Asperger's and the other with PDD-NOS. They require ABA, ST, and OT, and have been evaluated by doctors and specialists.

I work for a company that has a "self-insured" health plan through Blue Cross that has absolutely NO autism benefit. In other words, the plan doesn't pay for ANY autism-related treatment, diagnostic tests, etc. Even though Illinois law mandates an autism benefit that includes ABA, OT, etc., my company does not have to abide by it because we are self-insured (as ore 50% of company plans in the US). The last company I worked for was also self-insured.

My question is this: how will the Patient Affordability Act (Obamacare) change any of this? I saw that ABA, ST, OT, etc. may be classified as an "essential service" for health plans, but according to what I have read, this is only for individual and small-market plans: firms with over 50 employees that are self insured will not have to abide by this (and that is literally hundreds of thousands of policy holders).

Will I be able to drop my health plan at work and go to the insurance exchanges when they open in 2014? Or will I not be allowed to do this because I am covered by my employer?

Can I get private insurance that will cover ABA? Or is this next to impossible, or totally unaffordable?

We live in an apartment right now and pay $1200 out of my own pocket for ABA, ST, OT, etc. I can't buy a home because of my healthcare costs.

We home-school, and even if we enrolled the children in the local district, it wouldn't give us ABA or enough ST,OT, etc. We already checked on that.

I can't believe that my choices are either move to France or get no Autism treatment! What can I do?

Ugh, insurance misery. I went down that road a few years ago when my insurance company wouldn't even cover my child's diagnosis, let alone services. Although we were actually lucky then because we don't have any insurance at all now.

A couple of things I can think of, first, are you sure that the school district wouldn't cover at least some therapy? By law they may be required to, possibly even in a home school situation. I know budgets are tight all around these days, but it may just be something you have to fight for (nicely, but firmly).

Another option could be to cancel your children's current policy and get them on CHIP, or maybe Medicaid. I think each state is different. In some states, an autism diagnosis would automatically qualify them for Medicaid which usually is completely independent of whether they qualify for an employer's plan or not. CHIP may not be available to kids who have the option of being on their parent's plan, but I'm not sure about this and it may vary by state - although there might be a waiting period where your children must be uninsured for at least 6 months or longer (which really sucks, doesn't it?).

Many states are at least looking at making it mandatory that insurance companies cover all autism services and it's already a law in some states. I'm not holding my breath for any major changes coming down the pike from health care reform. It's been watered down so much already that I'd be surprised if we end up even noticing any major changes.

Or maybe there's even a more creative solution out there. Maybe local universities offer some sort of free or low cost student therapy sessions. Or perhaps you can privately seek out an unemployed therapist and offer cash. Around where I live, ABA therapists get paid very little (like $12/hour). Makes me wonder why the bill is often so big... But anyway, good luck and don't give up. All is not lost and I truly believe that where there's a will there's a way.

When my son was diagnosed with AS I asked if this included his anxiety disorder of if that was a separate issue.. He told me not to even worry about that and that in the end, that line of thought could hurt us.... He advised that our insurance doesn't pay for autism treatment, but does pay for some of the symptoms.. like anxiety... So talk with your kids' doctors and see if they can give you a comorbid that IS covered by insurance.

We received an IEP for the kids: the school district refuses to do ABA, and will only do 1 hour a week of speech therapy for one of the children.

so that didn't work (and we live in an excellent school district).

The State of Illinois has a law that mandates autism coverage in insurance policies, but my company self-insures, so they don't have to abide by the law: companies that self-insure are exempt from ALL state regulations and most federal regulations.

The Patient Protection and Affordability Act (Obamacare) has passed mandates for coverage, but companies can "grandfather" their health insurance policies. This means they don't have to abide by ANY of the federal provisions, including ERISA mandates. A recent study concluded that 99% of employers will grandfather their health plans.

I just called the Medicaid (Illinois CHIPs) office, and they told me that they do not cover ANY ABA, OT, ST, etc. for Autistic children.

Great social safety net we have here

Oops mispost.

http://jfs.ohio.gov/Ohp/consumers/benefits.stm#speech

according to that list, OT and ST are covered by Ohio medicaid on a limited basis.
"Occupational therapy All recipients 30 visits per 12 month period (no limit in an outpatient hospital setting).
Speech-language pathology therapy All recipients 30 dates of service per twelve-month period for any combination of speech-language pathology and audiology services"

its not a huge amount, but may help cut down your costs. i dont think the CHIPs programs are necessarily providing the same services, so maybe there is a difference between that and straight medicaid. also ask about waiver programs, in some states you can get medicaid for children with disabilities even if you otherwise would not qualify because of income limits.

like BurntOutMom suggests, co-morbids can be your friend. see if your doctor can help you get services covered under not just the autism umbrella, but a more specific diagnosis.

i understand the frustrations with insurance. i live in michigan and they failed to approve the autism insurance reform last december.