Wednesday, February 18, 2009

Yay! Clay's Law passed the first Senate Vote today!!!

We are another step closer to having insurance coverage for autism.

There is a lot to cover in this post. Please be patient with me, it is all very important....

There was a lot of heated debate today before the vote. I will get back to that later in the email.

Here is how the votes went:

Bell - Jones - Niederhauser
Valentine - Davis - Knudson
Okerlund - Van Tassell - Goodfellow
Mayne - Robles - Greiner
McCoy - Stephenson - Hinkins
Morgan - Stowell

Bramble - Hillyard - Liljenquist
Urquhart - Christensen - Jenkins
Madsen - Waddoups - Dayton
Killpack - Romero


One thing that we were not aware of is the fact that there are two votes in the Senate before it passes and moves on to the House Sub-committee. We don't understand why this is the case but don't have time to worry about it. The LAST Senate vote is Friday from 10am-12pm. We need to make sure that we keep all our "Yes" votes from today. It was clear today that the insurance lobby is working hard to kill this bill. They will not stop and neither will we. Please contact your legislators ASAP and THANK those that voted yes. PLEASE BE RESPECTFUL of those that voted no. Thank them for taking the time to learn about Clay's Law, and encourage them to reconsider.

One Senator told us this morning that he received many hurtful emails and phone calls. He felt as though he was being harassed. We believe that he still could have changed his mind to vote in favor of Clay's Law, but after hearing him speak to us this morning about the emails and phone calls, we knew that it had only solidified his "no" vote. We can't afford to alienate any legislators. Please remember that any negative or emotionally-charged comments could easily polarize a legislator against us.

These are some of the negative arguments that were raised today:
1. Several legislators brought up the idea of an insurance rider for autism. There are several reasons why a rider is not an acceptable solution. First off, the rider does not help YOU...families who already have a child with a diagnosis. The rider would have to be purchased before a child is born. How many of you would have opted to pay extra for autism coverage before your child was born, just in case they happened to become diagnosed with autism? I can honestly say that I wouldn't have. Young parents are already faced with so many financial strains of having a new baby. The few that might buy into this plan would probably be those that already have autism in their family. So, we know that MANY children still wouldn't receive coverage for their treatment because their parents didn't buy into the rider. Second, the rider that has been proposed by the insurance companies only allows coverage for children from 2-6 years old. It only allows $25,000 a year for coverage, and there is a daily limit of $100. We know that these severe limits would not provide for quality treatment. There is no way that a full early intensive program could be attained with these limitations. Third, There are not riders for preemies, cancer or diabetes. Why is this medical problem not good enough for full health insurance coverage? Lastly, we in the autism community view the rider as a calculated distraction by the insurance lobby, and vote for the rider is a vote against families and children with autism.

2. Another idea brought up by Senators was a government program to provide treatment to children with autism. There are several reasons why we won't consider this either. First of all, we all know that our state is in a budget shortfall. There is no way that they would be able to find the amount of money needed to provide every child with autism with a full early intensive treatment program. If they were to somehow fund it, we know through other states that the reimbursement rates are so low to treatment providers that the quality of care is horrendous. There would never be enough money to provide all children with care at once, so there will be waiting lists. If a Senator thinks that the price tag of Clay's Law being $1.8 million is too high, then they would never be able to get the price low enough for a government program. Lastly, Autism is a medical problem that needs to be addressed by medical insurance, not the state.

3. This bill will only help 30%, so it's not fair to everyone else. While this legislation will only affect 30%, it's a starting point. We need to start breaking down the barriers somewhere. We can't expect to change the law to cover everyone over night. We know that in other states where similar legislation has passed, some of the larger self insured companies have followed suit to be able to compete with other companies in their states. The fact is, we can't regulate all health insurance at a state level. We are doing what we can. The rest of insurance is governed by federal law. We know that President Obama has drafted legislation that would mandate the rest of the insurance plans. You can see this draft legislation by going to the link on the right hand side of

4. This bill is a mandate. Some Senators are philosophically against forcing health insurance companies to cover certain things. It's hard to get them to look objectively at Clay's Law if they can't get passed the fact that it is a mandate. Senator Stephenson spoke to this today. He talked about how right now, everyone with health insurance is being mandated. We have no control over what is covered and what isn't. Us young families with children who need help are paying the health insurance premiums that are being spent on the oldest generation. We know that 80% of health care costs go to those who are in the last five years of life. Our health insurance premiums are going towards hip replacements, terminal cancer and life extending treatments. We are paying these premiums, but we can't even get treatment for our children, who have their whole lives ahead of them. The other argument against a mandate is that it raises the cost of health insurance premiums for all, thus making health insurance unreachable for many. Claims are made that employers would have to forego coverage for the cost of this mandate. This is simply untrue. An actuarial report of the fiscal effects of Clay's Law documents the maximum likely cost on the insurance ratepayer is 0.85%. This translates to about the cost of a tank of gas per year for each policy holder. The insurance industry's own association - the Council for Affordable Health Insurance - estimates that mandated autism benefits increase premium costs by LESS than 1%. Despite the doomsday predictions from the insurance lobby, there's been no mass exodus of insurers, no businesses throwing in the towel because of this benefit. Indeed, experience indicates the impact on premiums has been negligible. In Indiana, the Department of Insurance called the financial impact "unmeasurable" even years after the coverage became effective.

5. Treatment isn't proven....Behavioral interventions are based upon decades of scientific investigation with individuals affected by a wide range of behavioral and developmental disorders, including autism. Specifically for children with autism, research demonstrates the efficacy of ABA in teaching complex communication, social, play, and self-help skills, and in reducing disruptive behaviors. Numerous long-term outcome studies (e.g., Lovaas, 1987, McEachin et al, 1993) document that 40-50% of children who receive early intensive ABA treatment achieve: Higher educational placements, Increased IQ levels, Perform successfully in mainstream educational settings, and Become indistinguishable from same-aged peers.

6. There was a request for a "Sunset" to be added to this bill. A sunset would mean that the cost of this bill would be studied at a later time to find out if it lived up it's claims of staying below a 1% increase in cost to policy holders. If the bill were to cost more than 1%, the bill could be taken off the books. We are confident that our numbers will stay this low. There has been much research done on the cost to policy holders in other states with mandated coverage as mentioned in #4. We will likely agree to a sunset to be added to the bill if this is what it takes to get it passed.

We kindly ask that if you contact your legislators and want to talk to them about these arguments, that you not accuse them of making all of these claims. When talking about them, merely say that these were some of the arguments that were brought up by Senators today during the debate. Let them know how you feel about these arguments, and why Clay's Law is still the best solution. Please keep your arguments objective and respectful.

Every Senator that spoke during the debate today talked about how strong the parent lobby for Clay's Law is. They ARE hearing our message, and your dedication IS paying off. While we may not be able to turn every vote in our favor, we are very impressed with some of the votes that have come around through constant communication from their constituents. Please keep it up. Don't quit now. We only have four weeks left. Each vote will get harder and harder. We need our grassroots to remain STRONG and UNITED! Please do whatever you can to be at the second Senate vote on Friday at 10am. We need to fill that Senate Gallery again. It was our understanding that children were discouraged and standing in the gallery was not allowed. Today, both were allowed. On Friday, bring EVERYONE! Bring your friends, family, neighbors, kids, neighbors kids, and whomever else will be willing to be there. Wear red and your Clay's Law buttons. We need a great showing from as many as possible.

Thank you for your support thus far. Keep up the great work, so that we can all cheer in the end for autism insurance coverage!