In So Many Words

The 15th annual National Autism Conference opened today with this fascinating keynote session. The speaker, Lorri Unumb, is warm and engaging, and has an adorable son Ryan, who has autism.

She is also a lawyer who spearheaded the health insurance coverage bill for autism in South Carolina and who now works in the Government Relations Department at Autism Speaks helping other states pass similar laws. In addition to this, she teaches law and, with her husband and fellow lawyer Dan Unumb, has written a textbook called Autism and the Law: Cases, Statutes, and Materials.

The History of Health Insurance Coverage for Autism

Don’t let the perfect be the enemy of the good

Lorri began by describing the process of getting autism coverage in South Carolina, from the original bill she drafted at her kitchen table to the last-minute drama that took place when the governor vetoed it the night before the last day of the legislative session in June 2007. Lorri and her husband spent the night calling supporters to mobilize a group to be at the capitol the following morning to ask the legislators to overturn the veto. People showed up – with kids in tow! – and the legislators voted to overturn unanimously.

Although she admits there are a few terms in the final bill that she did not agree with, she told us she has learned that this is part of the political process and urged us not to let the perfect be the enemy of the good.

She then gave a brief overview of the history of autism coverage in the US. The first meaningful autism insurance mandate was passed in Indiana in 2001. It passed very quickly and without much opposition or fanfare, and then nothing else was seen until 2007, when both South Carolina and Texas enacted similar laws.

Pennsylvania and four other states followed in 2008, with a few more each year to give us a current total of 27. They vary in coverage somewhat, primarily with regard to age limits and dollar caps, and you can find detailed information on each state law at www.autismvotes.org.

Five Principles for Success

Lorri went on to share five things she has learned through her experiences that she believes are essential for successfully passing a new law:

1. Don’t overreach.

One example of this principle in the health care laws includes asking for equal treatment rather than special treatment. We are simply asking for coverage, not to be exempt from the same deductibles and copays as everyone else. Another example is specifying that therapies must be evidenced-based; we are not asking insurance to pay for swimming with dolphins (at least not unless it is somehow proven to be efficacious!)

2. Re-think what you know.

The opposition to these bills puts forth many different arguments against it, one of which is often that the treatments are educational, not medical, and therefore should not be the responsibility of medical providers or insurers.

But, as Lorri puts it, this is the wrong analytical framework. It’s not one or the other. Autism is diagnosed by a doctor, so it is medical, but it is also educational because the children go to school and the education system must respond to them in some way. However, schools are mandated to educate children, not to treat their underlying medical conditions. Schools provide support services to help kids access their education, not to make them better.

3. Come together.

Although the autism community has many divisions over various issues, but we have to come together on the issue at hand to have any hope of getting the legislation passed. Her advice is to fight it out amongst ourselves later, but not to let any of it show to the legislators. They need to see that we are united on an issue to support it.

4. Educate.

Think surface level. As in really basic information. As in colorful graphs and clear sound bytes. Some people still have no idea what autism is or if it is even a real thing, so this is not the time for an in-depth discussion of the DSM-IV diagnostic criteria.

If you don’t believe me, check out this video that Lorri played for us and notice the air quotes this legislator uses when talking about “autism.”

5. Use your ABA techniques.

Specifically, give lots of positive reinforcement. Send the legislators thank you notes and issue press releases whenever someone signs on to your bill, and keep your grassroots gang updated with all of the positive steps that are being taken towards getting it passed.

Of course, you can use these for any legislative advocacy, but they can also be applied to IEP teams and other scenarios (recalcitrant family members, perhaps?)

Other Policy Issues

While the team at Autism Speaks has currently chosen to focus on health care coverage and is planning to continue working to see legislation enacted in all 50 states, they have also identified a number of other policy areas for future work, including:

• Life planning
• Federal insurance law (since not everyone is covered by the state laws)
• Education
• Funding for research
• Legislative autism commissions and task forces
• Criminal laws and proceedings
• Medicaid – patchwork of waivers and EPSDT

She also pointed out that, as difficult as it is to get an insurance coverage mandate passed, that is only the beginning. Once the law is implemented, there needs to be someone making sure it is being enforced.

Here in Pennsylvania, we are still in the implementation phase, with the final regulations for behavior specialist licensing still not completed. As was highlighted in the parent advocacy session I attended in the afternoon, which was led by Lorri and her husband Dan, many of us in this state are still thinking in terms of Medical Assistance, even though that is really secondary for anyone covered under Act 62.

As long as this post is, I have just touched on the incredible amount of information we were given today, and I can only imagine how much I will have taken in by the end of the day on Thursday! If you are interested in more information about this particular topic, you can visit www.autismvotes.org and find out what is happening in your state.

Usually, when you hear a horror story regarding a child with autism and the dentist, it relates to their sensory issues and other difficulties that make it a traumatic experience for everyone involved. In our case, the pain and suffering centers on my having to deal with the insurance company.

Let me preface this by saying that we choose to have an HMO for our dental insurance rather than the PPO option. Overall, it is the better choice for our family, but it can be a real pain when trying to obtain appropriate care for our son.

Let me also say that I realize this is not really a horror story because it eventually gets resolved and that I know many people go through far worse in their dealings with insurance. I just think I will feel better once I get it off my chest, so to speak.

Our Dental Saga

February 3rd – Take Michael to new primary dentist, watch hygienist attempt to clean his teeth and dentist attempt to examine them. Once his teeth have been half cleaned and one cavity has been identified, obtain the referral to the pediatric dentist.

February 17th – Take Michael to pediatric dentist, who has been seeing him for several years and cleans his teeth himself with a regular toothbrush. Listen as dentist tells me he actually has two cavities and that he would like to fill and seal them, using nitrous oxide to help him be calm during the procedure.

February 25th – Receive predetermination notice from insurance company that everything except the anesthesia would be covered. Notice states that it is valid through 2/24/11.

March 10th – Michael turns 8 years old. (This become important later.)

April 5th – Take Michael to have the work done. The dentist is able to complete everything with the only complaints from Michael being that it took to long to “get his teeth painted.”

April 8th – Receive denial from insurance company stating that claim was sent in without referral form. (This happens every time, and every time the dentist insists they sent the form, so I don’t know who is telling the truth.)

June 10th – Receive another denial from insurance company stating that claim was sent in a second time without the referral form.

June 14th – Speak to the insurance company and am told that they can process the claim using the referral form that is attached to the predetermination of benefits for this service.

June 24th – Receive letter from insurance company stating that because Michael was 8 years old when the services were provided, our coverage no longer allows him to go to a pediatric dentist unless he has special needs that are documented by from his physician.

June 28th – Call the insurance company to find out exactly what the doctor needs to send and where it should be sent and am told by the customer service rep that no matter what I send in, nothing will be covered because our policy does not allow children 8 years old to go to a pediatric dentist, even with special needs.

After being put on hold multiple times and condescended to for not “understanding” his explanation of our benefits, am told that a supervisor is not available and he can request a callback for the next day. Am also told that the supervisors will probably ask him to handle it and won’t actually call back themselves. Tell him not to bother as I will call first thing in the morning.

June 29th – Call the insurance company again and ask to be put through to a supervisor immediately. Speak to a very nice and professional woman who explains exactly what I need from the pediatrician and where it should be sent. (She also expresses her shock at the way the call was handled the previous evening and promises to pull the call so she can review it with the representative.)

July 9th – Receive letter from insurance company that they are still working on the claim. (Assume this means they got the note from the doctor.)

July 15th – Receive EOB showing that all dental work has been paid for with the exception of the anesthesia. WOO HOO! Call to confirm that it is okay to schedule his next cleaning and am told I do not need another letter from the doctor.

Today – Call the primary dentist to get a referral to the pediatric dentist and pray that I’m not just starting the cycle all over again. Ugh!!

For anyone not familiar with this awesome weekly linkup, To-Do Tuesday was started by Lisa @ Crazy Adventures in Parenting for the purpose of attacking our to-do lists each week, blogging about our lists and what we’ve got going on, and sharing it with each other to help keep each other accountable.

What’s at the top of your list this week that you don’t want to do?

Thankfully, I have a good report to follow up on my post about the DAN! doctor insurance woes. I did get a call back from the office manager on Friday and the paperwork is being re-submitted to the insurance company. I can’t really share all the details here, but I will say that I have learned over the last couple of weeks of issues with various areas of my son’s care that there is almost always more to the story and a lot of the time it isn’t really about you personally.

I also realized that my niece’s birthday is actually today, not yesterday as I originally wrote. She is interested in many wonderful things that have never graced our toy bins, such as Barbie’s Pegasus, Polly Pocket, and Strawberry Shortcake. So it should be fun shopping for her, as a nice change from Legos and Thomas trains and Teenage Mutant Ninja Turtles (not that those things aren’t awesome, as my son would say).

It’s so amazing to see how much she’s grown – she’s almost as tall as her five and a half year old twin sisters!

Happy Birthday, Sophie!

Well, today has been a good day so far. I am getting into a groove with my new work schedule and actually feel like I am accomplishing something each day. It also occurred to me today as I was planning out my errands that this little bundle of joy (my niece Sophie) will be four years old on Saturday!

Now that Michael is at camp for three weeks, I have a bit of time to myself each afternoon. Today I was actually able to cross a couple of things off my to-do list.

The most frustrating thing that’s still on my list is to follow up with the DAN! doctor we saw in June. Although he is in network with our primary insurance, the claim was denied by our insurance company due to the way the paperwork was coded. The lovely lady in the doctor’s billing office is unfortunately not being very helpful about getting it resubmitted with the correct codes. She had reviewed the notes but had not actually spoken with the doctor when she called me back and seemed shocked that I wanted to speak with the doctor even though she herself had said that it is the doctor who codes the visits.

Anyway, I called back and left a message on the clinical staff voice mail as well, and then left another message on Tuesday. I went to my new psychologist yesterday (this is only my third visit, so I am still getting a feel for his style), and he said if it were him, he would just get in the car and drive there and tell them this has to be resolved right now. Wow, talk about taking direct action! I told him I wasn’t quite ready for that yet, but that I got his point about not giving up. I just needed to take a few more deep breaths before I pick up the phone again.

Today I called to try to get through to the front desk to speak to a live person and found out they are closed on Thursdays. So now I have left a voice mail and sent an email to the office voice mail/email. I can’t tell you how maddening this situation has become.

Well, I must sign off. My next project is to find a babysitter to cover the time that I thought my son was going to be at camp. (Yeah, the therapeutic camp that was supposed to be five weeks is now only three because the one he was supposed to go to didn’t get state approval, but by the time we found out about it, the other ones had already started. Why it wasn’t approved is one big issue and why it was even on the list in the first place without all the necessary approvals is a whole other question.)

But it really is a good day. And just being able to say that is progress for me.

I’m over at 5 Minutes for Special Needs today sharing about a talk I attended last night related to the autism insurance bill passed last summer in Pennsylvania.

If this topic affects you, you may be interested to know that the PA Dept of Public Welfare has devoted a section of their website to the PA Autism Insurance Act (Act 62). The goal is “to provide a central place to find information about the new Autism Insurance Act for family members, private health insurance companies, autism service providers and other stakeholders.”

On this site, you can find fact sheets, frequently asked questions, a list of information sessions that have been scheduled, and a mailbox to submit questions and suggestions for consideration.

Although I’m sure the implementation of this act will be a bumpy road, I know that we are paving the way for better treatment being available to children who are diagnosed with autism. I look forward to the day when I can tell a parent with a newly diagnosed child to just call their insurance company and request an evaluation to start ABA or other necessary treatments and services. (Am I being overly optimistic? You’ve gotta have dreams, right?)

Remember how I said on April 26th that all we needed for the Little Guy’s summer program application was the sign off from the psychologist?

Yeah, well, it’s still not done, and it’s been almost 2 weeks! My BSC emailed everything over to her so she had it on Monday the 28th (Thursday the 24th was the earliest day it could be sent in). I followed up that Friday to make sure everything was okay and learned that nothing had been done. I called and emailed the psychologist, who was out that day and received an email back on Monday that she would try to have it done this week. The insurance company (Medical Assistance Mental Health HMO) said I can file a complaint but there’s nothing we can do to make her complete it faster, and that if it is done this week, they may still be able to get him in somewhere, even if it’s not our first choice – or our second or third.

I just called and left her a message basically begging for it to be done and for her to call me back. At this point, the most important thing is that he gets in, so I am just throwing myself on her mercy to help us out (and yes, I used those words in the voice mail). Being proactive and assertive and all is great, but I am desperate at this point. If she isn’t going to have it done this week, I am thinking I will file the complaint, and if not, then I probably will still file one once this is all resolved one way or the other. BTW, she still has not gotten the diagnosis correction into his file, and the original evaluation was in January.

So my biggest question is – does everyone with a special needs child deal with this crap all the time, or do I just make life too difficult for myself??

UPDATED later that same day: My BSC just called and she got the addendum from the psychologist, so the packet is going in the mail today and should be at the office by tomorrow for review. We are not in yet, but we are a big step closer!