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In Georgia: Ava’s Law (SB 191)

In Atlanta, on March 11th, there will be a hearing on the Senate’s version of Ava’s Law (SB 191).

Ava’s Law would require the insurance companies that provide coverage for Georgia citizens to also provide coverage for autism therapy up to $50,000/year. Georgia is one of 11 to 18 (depending on whose numbers you use) states that do not have this law (or a similar one) in place. Ava’s Law’s namesake is Ava Bullard, a young girl in Lions, GA who was diagnosed with autism and whose mother had to pay out-of-pocket for treatment because her insurance company would not cover it. Treatment for autism costs anywhere from $10,000 to $75,000 a year. Ava’s mother is leading this effort. You can watch a video of Ava’s story below:

Most people hear the word “autism” and think of Rain Man starring Dustin Hoffman. While that movie was based on a man with autism, it is not a one-size-fits-all condition. Autism or Autism Spectrum Disorder (ASD) is a chronic neurological disorder that affects normal brain functions whose symptoms include ritualistic behavior, significantly underdeveloped social skills, aversion to change, and poor communication skills. There is no cure. There is only treatment.

The insurance companies in Georgia cover many treatments for physical, emotional, and mental conditions; however, autism is not one of them even though it affects 1 in 88 children in Georgia.

Autism Speaks, an autism treatment and awareness advocacy group, has posted a fact sheet detailing some talking points for calls to local representatives here. Additionally, they say that the state can save taxpayers’ money by passing this law – as children with ASD who receive treatment can grow up to be productive members of society and that the cost of special education would go down as these children have shown the ability to excel in a regular classroom.

It has been difficult to research any opposition to this besides quotes in articles. Reasons given for opposition include an aversion to government mandates and the uncertainty that comes with Obama-care. Similar bills have come up before, the latest being in 2009.

I have a vested interest in this subject. My oldest daughter was recently diagnosed with autism. While I have shared this with family and friends individually, this is the first time I have made it public. It has been very, very hard – frequent sleepless nights, outbursts in public, and self-inflicted harm have been a part of our lives for the past three years. All this was even before I found out how much money it would cost for treatment. Money has already been stretched significantly. I’ve taken a second job, the income for which will likely all go toward that treatment. We are tired. We are frustrated. For the most part, we feel helpless. If my insurance began covering autism treatment tomorrow, it would relieve us of a very heavy burden.

There’s a problem, though. I am a constitutionalist (or a conservative, if you will). As such, I have problems with the government (federal, state, or local) dictating to businesses what they must do, especially when it comes to compelling them to provide services that they would not otherwise provide. This is where the rubber meets the road ideologically. Do I advocate for the passage of a law that would be of great benefit to me and other families that desperately need relief, or do I revert to my ideology even though it would be an immediate detriment to me and people that I know and regard?

I am against Ava’s Law.

While I understand the proponents’ position and sympathize heavily with it, I cannot advocate for a position that would go against my understanding of the role of government. It is not the role of the government to force anyone (individuals or businesses) to engage in commerce to which they would not otherwise engage. These companies should provide autism treatment; but they don’t. So, what do you do? The autism advocates went with an easy path instead of the right one. That is not a put-down or an insult; I know it has been a very hard road for them. They have other options some of which are exceptionally more difficult than getting a law passed in Georgia.

Option 1 (the easiest): Move.

Every family in Georgia with an ASD child has considered this option. There are states (even bordering states) that would provide the government-mandated insurance coverage that you seek. This is highly disruptive and perhaps even unacceptable for you, which I understand. It is just an option.

Option 2 (shift targets): Advocate to the right people.

The reason New Coke went away was due to popular demand (and the fact that it tasted like liquified dung). This is how you focus your efforts. Research the insurance providers in Georgia, particularly their sister providers in other states. Analyze their numbers with respect to autism treatment coverage in those states. Find a smaller provider who is trying to get more of the market share and a bigger one that would be the most sensitive to a large exodus to another provider. I’ll discuss strategies below, but you need to do a few things beforehand:

First, organize your butts off. Be proactive in finding people to join your movement. Think of parents who have high-functioning autistic children who either refuse to believe their child has ASD or think the child is just quirky. Don’t wait for parents to come to that realization. Don’t wait for them to search the web for you so that they can find more information. Educate people (teachers, childcare providers, etc.) to look for those signs and provide their parents with resources. As I stated earlier, many of the people that I talk to about autism automatically think of Rain Man. Change that.

Second, conglomerate. This is not the same as organizing. Organizing is internal. You conglomerate externally. You do this because you will need the numbers. Seek out other disability advocacy groups in Georgia that are in the same boat with respect to coverage. Unify behind the cause.

Third, research. As stated earlier, research the providers. Perform the cost/benefit analysis. Get as intimate with their finances as they are. Find an economically viable way for the company to provide the  coverage. Agree on the two providers (one small, one large) for advocacy. Also, find out which providers your members have. Input that into your analysis, as the most common provider may be the large company you lobby. List out secondary providers in case the first ones fall through.

Fourth, split up and lobby. For your smaller company, you will have to make some concessions. Advocate for a profitable amount of coverage, even if it does not cover the whole of the treatment that Ava’s Law would. Make it clear to that company that they will get an influx of policyholders should the provider add autism (and other conditions represented by the conglomerate) treatment coverage. Find out what employers use those providers, so that you can prepare to migrate if they agree. For your large company, make it clear that you represent a substantial number of their policyholders who are prepared to change providers. You can also make concessions here about the amount of coverage. Remember to keep it either profitable or as close to profitable as possible. Negotiate, don’t demand.

Fifth, find a taker and migrate. The best thing that can happen is a large company agreeing to provide coverage. That way, most of the families will not have to switch jobs and other providers, seeing the migration, will have incentive to provide as much or more coverage in order to compete. If a small company agrees first, encourage your members to seek employment where that coverage is available. If neither agrees, move on to another provider. Lather, rinse, repeat as necessary.

Option 3 (do what Republicans haven’t been able to): Advocate to Congress to drop the restriction of health coverage across state lines.

If you can do this, there would be no stopping you. Currently, insurance commissioners hold the power over how a state regulates and enforces that regulation regarding health insurance. To get this restriction lifted would be a great threat to their power. This is, no doubt, the hardest road. You would have to organize and conglomerate on a national level. You should also support more like-minded insurance commissioners in the eleven states that elect theirs, petition the relevant commissions that appoint the commissioner in Virginia and New Mexico to appoint such a person, and petition the governors of the remaining 39 states to do the same. This will take years, but you will also end up building a very powerful lobby.

Conclusion

I can’t get behind Ava’s Law. It’s not the way to get what you want. Go about it using the free market. Exercise your First Amendment right to peaceably assemble. If I were the strategist behind the autism movement, I would suggest going with Option 2 for the short-term and Option 3 for the long-term (yes, do both).

I hope I don’t lose friends by writing this. My heart goes out to you; I am one of you. I want coverage for my daughter’s treatment, but I’m not willing to petition the government to mandating a company provide it. Be a consumer; use that power.

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