Can Autism Insurance Reform Come to the Insurance Capitol?
Managing Editor's Note: There's a saying that has served me well, "Don't punish progress." I live in CT. And while this bill is lacking in including our child in real medical treatment, if we can get coverage for therapies, that will free up money for other avenues of recovery. And perhaps many of the scrips our DAN! docs write can be included in "medications." That remains to be seen. Kim
By Shannon Knall
For years now, Hartford, Connecticut has been known as the Insurance Capitol of the World. By the same token, the rate of autism’s occurrence in the state of Connecticut is one in 123, higher than the national average of one in 150. Yet given these higher than average rates, Connecticut’s legislature has failed to mandate insurance coverage for autism spectrum disorders, despite the fact that insurance mandates in Connecticut are among the highest in the nation.
In the 2007 Legislative session, House Bill 5696 was introduced to the Insurance and Real Estate Committee. HB 5696 garnered impassioned public testimony from parents incurring the financial wrath of autism, but yet was stripped of it’s “meat” coming out of committee. Meaning, coverage for ABA, psychological evaluation/diagnosis and medications were removed, and only speech, occupational and physical therapy remained, among insurance lobbyist claims that the cost to implement the FULL legislation would cause insurance premiums to skyrocket.
Onward to the 2009 Legislative Session, and the introduction of Senate Bill 301 co-sponsored by Senate Majority Leader Martin Looney and Speaker of the House Chris Donovan. Add to the mix the full support of Autism Speaks, its fiscal analysis, its grass roots organizations and thousands of angry parents from around the state of Connecticut. On March 10, the Insurance and Real Estate Committee unanimously passed SB 301 from committee, without discussion, without changes.
Hope.
My question to legislators is always this; are you a supporter or are you a champion? If you are a supporter, we thank you, but understand that really means that you cast a vote just because the public pendulum has directed you to do so. If you are a champion, you will be our hero forever. You have linked arms with us and fully understand the fight that we fight. You cry with us when we tell you the stories of our children, cruelly ignored by society and “handled” as if they were stupid, insignificant and unimportant. Worthless. Incidental. Costly.
Senate Bill 301 will be a minimal cost to the state (www.autismvotes.org/connecticut) and will provide long-term benefits for people with autism, and if we choose to look at services needed to support people with autism as financial, a huge cost savings long term. Most importantly, it is time to end the discrimination. People with autism, families impacted by autism pay insurance premiums, yet we do not get insurance coverage. We are not asking for anything other than what other people who pay insurance premiums get…coverage.
Shannon Knall is the Advocacy Chair for the Connecticut Chapter of Autism Speaks. She is the mother of three boys; Jack, Patrick and Jameson. Jack (8) has autism.
Jack was diagnosed with autism in 2003, and Shannon immediately became involved in the organization NAAR (National Alliance for Autism Research), now Autism Speaks. She chaired the first three Walk Now for Autism Fundraising events in Greater Hartford. Under her leadership, raised over $1.2 million dollars for Autism Speaks.
In 2007, Shannon developed the Autism Awareness Bootcamp, which she presents across the state of Connecticut. Geared towards supporting newly diagnosed families and teaching others how to support our growing numbers, the bootcamps have been presented to community organizations (Rotary Clubs, PTOs) and businesses (like Lake Compounce, Hartford Children’s Theater and CoCo Key) for employee training.
In her role as Advocacy Chair, Shannon worked with legislators to secure passage of HB 5696 in 2008, mandating coverage for speech, occupational and physical therapy for autism spectrum disorders. In 2009, she is working with Senator Looney and Speaker Donovan to end further discrimination against people with autism, by mandating insurance coverage for ABA, psychological evaluations and diagnosis and medications.
Good luck to you all in Connecticut. Here in Illinois the insurance for Autism mandate was also passed and is now in effect. I am currently in the state funded insurance coverage which is pretty limited. I agree with the person from PA as to the potential undertones of the insurance industry in providing sub-par services.
I think it is necessary for some type of middle ground between those services treating Autism and the insurance industry. I have been told ABA alone can reach $85,000 or more a year. Illinois provides up to $35,000 a year maximum coverage. This would leave $50,000 a year gap which is more than many people like myself make in a year. What can be done on the treatment side at reducing the cost without reducing the quality. It seems the increase in patients would be great enough to offset the lower costs of treatment. Currently Arek our 5 year old son with Autism gets minimum therapy. Most of his therapy is done by My husband and I. $50,000 might as well be $150,000 The price effectively removes the option from our table.
Thanks for the post
Posted by: AutismMomIL | September 12, 2009 at 08:40 PM
I was apart of the grassroots campaign for VA this session. HB 1588 was sent to subcommittee and all members chose not to make a motion. The Silent Seven as we un affectionately refer to them as essentially killed the bill. We had another companion bill in the Senate, SB 1260. Many parents just like myself traveled to Richmond multiple times to rally support for both bills. With SB 1260, we made it a little further. It passed the first Committee and went to finance. After butchering the bill first. Financed passed it and it was sent to the Senate floor the night before Crossover. After our longer than a year efforts, SB 1260 was referred back to Finance. Our only other hope was killed also. We worked endlessly for months to get support from both sides of the party lines. We finished with 27 patrons in the House and 6 in the Senate. With the help of Autism Speaks, we were able to go further with these bills than any time before. I want to say thank you to the many parents across VA that I have met during this journey. We are not done. We will have our day too.
Is your child worth a cup of coffee? Mine is priceless. To not support something like this is inhumane in my eyes. Our bills would have covered ABA, Speech, OT and PT. Along with Psychological counseling and evaluations. I am glad that other states have passed the legislation that our children need so desperately. I am concerned though about the points that PhillyMom brought up. It could happen here if we do get a mandate passed. I thought the same thing. More money for biomedical interventions.
Good Luck everyone with their efforts. To PhillyMom, thanks for posting your comments. I will be sharing this with the members of our grassroots team in VA. We are already preparing for next session!!!!
Posted by: fightingmomvada | March 14, 2009 at 11:30 PM
A warning from Pennsylvania (re: HB1150/Act 62).
Last year PA passed HB1150/Act 62 mandating Autism Insurance Coverage starting 7/1/09. Like many parents, I wrote, called, and emailed my local representatives with my personal story (we have a 5 yr old son with ASD), and explained how important and helpful this legislation would be for families impacted with autism. I never thought that the legislation would cover everything (ie “biomeds”), but ABA, ST, OT were so clearly called out in the legislation, my hope was we would be reimbursed for at least some of the cost of these therapies (and this would free up some of our funds to go to the biomeds, additional therapies, etc). We were thrilled when the legislation was passed, sent thank-you notes, and were relieved that some help was on the way. The legislation was hailed as “the strongest autism insurance reform legislation in the nation” (direct quote from AS Website).
So it was with great enthusiasm, that I recently attended a meeting run by the PA Insurance Department. Not to burst your bubble about the pending legislation in CT (or other states), but I left this meeting completely frustrated. Once again, our children do not get help. My expectation was that I would learn about reimbursement codes and procedures for autism, instructions for how my ABA provider could become an in (or out of) network provider, etc. What I did learn was, who is NOT covered:
1)Those insurance plans that cover <50 people (ie all those who are self-employed or who work for small business).
2)Those plans that are self-insured (the liason indicated many teacher/government plans fall in this category).
After listening to the parents comments, many, if not most of the parents who attended the meeting will not be covered by this legislation. Of even greater concern are the numerous questions and concerns regarding the “quality” of approved services. The definitions regarding licensing of ABA providers is still not defined, so only providers that are approved under Medical Assistance will be “grandfathered”. In the area that I live in, most doctors (including my DAN doctor and developmental ped) will not accept MA, due to low and slow reimbursement rates. Many of the providers who attended the meeting flat out said they could not survive on the MA rates. Some complained that they have tried to get approved from MA, but can never get in touch with anyone regarding their paperwork status. Some parents mentioned that they have an approved treatment plan, but can not find staffing under the approved rate. My experience with the approved MA behavioral services in this area is that they do not really provide ABA. Another concern after hearing the presentation is that the insurance companies could collect data on this low quality ABA and then say it has no real impact.
Bottom line: Insurance is covering low quality services, provided by a few low cost providers, for very few children in PA. Meanwhile, status quo for most families -- we will be left fighting with local county and school districts, and self funding effective therapies.
The general perception that I got, from both parents and providers, was one of profound disappointment – the legislation just is not going to live up to the billing. I did not think that I was supporting the insurance industry pumping funds into MA; I thought I was supporting insurance coverage for necessary therapies and doctor visits for my sick child. AS has sold this as “best in nation”?? Perhaps there were good intentions, but for our kids it is time that we see some meaningful results. I do not think that this legislation will have a meaningful impact for most families struggling with the financial burdens of autism. I want to change the title of HB1150 to SOL1150. Sorry for the negative tone, but I can’t even tell you how disappointed I am; my family had been counting on some help from this legislation. Good luck in CT and other states with insurance reform.
Posted by: PhillyMom | March 14, 2009 at 04:35 PM
Can it come anywhere?
Our bill in GA was just tabled after we rallied it through the Rules committee.
While Autism insurance bills are not often perfect, something is better than nothing at all.
What amazes me is that more expensive, preventable conditions are covered under insurance.
For instance, if I chose to let my child become obese watching TV or playing video games and fed him junk. If he developed Type 2 Diabetes, he would be fully covered.
Fully covered for something totally preventable.
Once again our kids are treated as though they are subhuman. Not worthy of care.
Despite having a plethora of medical conditions, they remain utterly ignored.
Unfortunately the longer the insurance issue is pontificated by those exempt from this fight, the more kids who could benefit from early intervention, go untreated.
I could have cried when I explained to a State Senator we spent our life savings healing our son with very little coverage.
I explained my severely Autistic, non-verbal child was in a normal class and talking now. The Senator looked at me and said "See everything turned out alright!".
I thought my head would explode. We paid in nearly 900/m for insurance got less than 100.00 in coverage that we had to fight tooth and nail for and drained our life savings.(ie college and wedding funds for our other 3 children, our retirement.) And somehow this was "alright". Huh?
At some point the taxpayers will assume this burden. After parents drop dead from exhaustion I suppose.
Why not let their parents treat their
children like anyone else, give them the best possible chance at living a productive life???
Is that concept not worthy of investment?
Posted by: karenatlanta | March 14, 2009 at 03:42 PM