[This is an uncharacteristically long entry, and for that I apologize. I hope that by the end of it, if you last that long, you'll understand.]
HB 1224 - Relating to health benefit plan coverage for enrollees with autism spectrum disorder, passed out of the Insurance Committee in the Texas Legislature earlier this week, and the Committee report was sent to Calendars on Tuesday. The bill is a companion to SB 419, which passed the Senate floor unanimously, with one exception: HB 1224 came out of Committee with an amendment removing Applied Behavior Analysis (ABA) therapy from the list of services mandated for children aged 3-5.
ABA therapy as it pertains to children on the autistic spectrum involves teaching social and verbal skills to those not able to learn such things normally, which is to say through observation and imitation. In re-routing these learning pathways, the hope is to get the child back on course to mainstream life. It's intense - 20-40 hours a week of therapy in most cases, much of it one-on-one - and it's expensive, putting most college tuition structures to shame.
ABA is also effective. Half of children who have an early, intensive ABA program are able to function in normal schools with minimal or no support. It's considered the most effective early intervention for young children with autism, and has been recommended by the Surgeon General since 1987.
Finally, it mitigates the cost to the state, estimated at $3 million over an autistic person's lifetime, if they don't receive early intervention. Contrast this with the cost of a .5% increase in insurance premiums.
I'm asking every Texan reading this to call their representative (you can do a search here, calls are more effective than e-mails) and tell them you're concerned that HB 1224 passed out of the insurance committee with an amendment that removed Applied Behavior Analysis, and you want it put back in. You can cite the information I listed above, if you're so inclined.
And while you're at it, feel free to call Rep. Larry Taylor, who authored the amendment in question. His other contributions to the welfare of our state have included authoring a bill requiring elective courses for academic study of the Bible and joint authoring a bill providing for "Choose Life" license plates. After you've contacted your representative about putting ABA back in HB 1224 (especially any Friendswood or League City folks out there), maybe you could ask Rep. Taylor why someone who cares so much about children yet to be born apparently doesn't give a fuck about the welfare of those already here.
But then, I think we already know the answer to that.
[UPDATE: I left a message for Taylor's Chief of Staff to call me back with a reason for his authoring the amendment. You can also call him at 512-463-0729 (his Capitol office) or 281-338-0924 (District office). Or you can click here to send him an e-mail.
And according to his bio, he's an insurance agent. Quelle surprise.]
You may be asking why I care about this. Some of you already know, but for those who don't, I can give you two reasons. The first is that insuring Applied Behavior Analysis is the right thing to do. Autism is at epidemic levels in this country, with an estimated 1 in 150 children diagnosed on the spectrum. ABA is the only therapy proven to be consistently effective in treating it, and the fact that it isn't covered by insurance would be laughable if it wasn't so infuriating.
The second, more pragmatic reason, is that I'm the parent of a child on the autistic spectrum who is currently enrolled in an ABA program. For those who don't want to hear about that, you can stop reading now. If you're curious about my family's personal experience, carry on.
Okay, here goes.
About a year and a half ago, my wife and I noticed some disconcerting things about our daughter, coyly referred to as She Who Shall Not Be Named. At 18 months, she'd been able to count to 20 (and to 10 in Spanish), identify and name all the letters of the alphabet, point to and name just about every external body part, and had a vocabulary of close to 100 words. Some time around Halloween/Thanksgiving of 2005, however, we noticed she was becoming less and less vocal. She also began retreating more and more to her playroom and seemed like she wasn't hearing us when we tried to talk to her. Unsure if we were overreacting, we asked the director of SWSNBN's day care to observe her and tell us what she thought.
I'll cut to the chase, because you can probably figure out where I'm going and I still have a hard time writing it out without breaking down: we were told our daughter was most likely autistic. This was January of 2006, and thus kicked off what was - without qualification - the worst year of our lives. We met with SWSNBN's pediatrician, and also a pediatric neurologist, who in turn scheduled a hearing test to make sure she didn't need tubes (she didn't), an MRI to look for congenital brain malformations, an EEG to look for epileptic disorders, chromosome tests to look for things like Fragile X syndrome and Rett's, and something called the brainstem auditory evoked response test. Everything came back normal.
"Normal" is good, because it means she doesn't have something wholly incurable and/or lethal. It's also bad, because - absent a definable cause - SWSNBN will most likely get lumped in the Not Otherwise Specified bucket for pervasive development disorders. See, the PDD spectrum runs the gamut from classic autism - characterized by self-injurious behavior and retardation - to the higher functioning Asperger's. The "PDD-NOS" appellation, roughly translated, means the doctor can hedge his bets on a final diagnosis until she's older.
In the meantime, SWSNBN has worked with the State's Early Childhood Intervention program and attended the Developmental Building Blocks program at the Parish School, which specializes in children with language issues. She's also seeing a nutritionist, and is on a casein- and gluten-free diet. Before you scoff at that, I'll tell you that the improvements to her behavior and language after we took dairy out of her diet were dramatic and immediate.
Since September, she's also been enrolled in an ABA program. Her improvement since she started has been steady and, frankly, undeniable. Her receptive language and focus have improved, and she seems to have regained some of her interest in her books. Her teachers think she shouldn't have any problem "mainstreaming" into a regular school in the near future. She may always be a little weird, but that hardly makes her unique in our family.
The outlook in our case is relatively good, thanks in no small part to various factors weighing in our family's favor: we live in a city with some of the best medical facilities in the world, and one with easy access to organic foodstuffs. We also have plenty of family close by, and a number of great friends who have given us no end of support throughout this.
We can also pretty much afford everything. ABA therapy isn't cheap - think two mortgage payments a month (and not those wimpy second mortgages neither) - and like just about everything related to treating autism, it isn't covered by insurance. Sure, we were able to get the bulk of her tests paid for, but speech therapy? Occupational therapy? ABA? Not so much.
Which is what makes the amendment to HB 1224 so maddening. After all, if I was feeling a little down in the dumps, my health plan would cheerfully cover the cost of my happy pills. If I drunkenly jawed off to Mirko "Cro Cop" Filipović in a Zagreb bar and he broke my jaw, insurance would cover the emergency room visit and my subsequent weeks of pain meds. Hell, if I was an 80-year old man having trouble getting a goddamned hard-on, insurance would cover my boner pills, but therapy to help my daughter become a functional and productive member of society and not just another ward of the state after her parents die? We can apparently fuck right off.
So we're choosing to tell our daughter's story now, after being quiet about it for the last 16 months: to emphasize how important it is that this bill pass in its original form. If it seems opportunistic or self-serving, well...there's not much I can say about that, except that things like ABA and other therapy programs would seem to be the point of insurance: to insure the well-being of these kids who otherwise would be without hope for a future.
Finally, the only thing that really gave me pause about posting this was something that was said to me about the possibility SWSNBN might read this later on in her life and be mortified. My only response to that is this: I'm not a religious person, so prayer is out of the question, but I hope beyond anything I have ever hoped in my miserable life that my daughter, at some point in the future, is able to read this blog and yell at her father about it. I want that so badly it physically hurts.
Okay, that's all. Thanks for reading.
UPDATE: + Thanks to Chuck for the link.
+ Three Wise Men has (have?) also linked to this, thanks guys.
+ Perry mentions us in his entry about the Republicans' dismal record on the health and welfare of Texas children.
+ Thanks, Greg. And Melanie. And 'stina. And Carol.
To the out-of-staters commenting about contacting family members still in Texas, thank you. I appreciate it.
Thanks for sharing your story. I no longer live in Texas, so I can’t help on the vote issue, but with your permission, I would like to share your story with my extended family who still does live in Texas. You know how large my family is (and combined with my wife’s also large family it is approaching the population of some smaller countries), so I think we can help turn the tide. Take care and pass on our love to your lovely wife and daughter. As always, best wishes. —B
Thanks for writing this. Hopefully Texas will do the right thing. This post will help. Take care.
You have my full support.
So, ah. Exactly (exactly!) what Seadogs said in every particular except the family size one. We hope to see you all when we’re down there for Labor Day.
Pete, I can empathize to some extent…I have a godson who is autistic (probably a little farther down the spectrum than SWSNBN). The expense and heartache are astounding, and in my godson’s case were complicated by the fact that his mother, apparently unable to deal with her son’s autism, picked up and left. The bright spot is that the dad is a doctor, so the expenses are at least offset by income.
I hope the Lege finds the stones to do what’s right. You say it well: it’s therapy to help people with autism become functional and productive members of society. Much more important than boner pills for old guys…and I’m an old guy. Getting there, anyway.
Holy crap Pete! Wow, I had no idea. I’m very sorry to hear that you are going through this - we had some worries when both N and A were about 2.5 years old, especially with N, since he was so sensitive and wouldn’t meet anyone’s eyes. THey turned out fine fortunately, though 2 of A’s classmates are in the NOS category, so we see them and their parents often. So, I know from observation how hard this can be.
I hope Texas does the right thing - WI is working on it as well. And I hope Rep. Dingleberry gets his ass roundly kicked.
I know it’s hard to write this kind of stuff, rather than your usual. Thank you for sharing it.
Elkins, house 135, has heard from me. Good luck, Pete. You know you and T and SH are in my thoughts.
I saw an absolutely unbelievable documentary at the Tribeca Film Festival this past weekend called Autism: The Musical. It was so moving and so touching. And what was most moving about it was trying to imagine what the parents were going through, whose wish every day was to have one connecting moment with their own child. The stories just blew my mind. I’m sorry to hear that you and T and SheWho are going through this. But I also know that SheWho’s chances of living a “normal” life (whatever that is) are definitely higher because she has parents as determined, smart, and caring as you and T. I’m glad for your sake that you can afford the therapy. But I will certainly contact anyone I can think of in Texas to help make sure that someday you don’t have to, and those that can’t can have the access to it.
You are completely right about insurers covering the - in the scheme of things - minor issues but ignoring the life-altering.
And holding the wrong end of the stick…don’t get me started. They won’t cover my cholesterol meds, but will cover 80% of treatment for a stroke or heart attack?
And when it comes to an issue that will affect the health and well-being of a CHILD, there should be no question. Every dime we spend on a child’s health only strengthens our society for the future.
My sister-the-nurse used to work for a health insurance company, but quit when she found out the people making medical decisions in most cases had no more than a high school diploma. These cretins deserve every bit of misery they have caused - and that goes double for their bosses.
I’ve sent a link to this post to several friends in Texas with the plea to get on the phones and demand the Lege do the right thing.
Although I suspect Jessica Farrar is already on our side, I called to register my opposition to the amendment. Be sure that the person on the other end of the call/e-mail understands that you oppose the AMENDMENT, not the BILL. It took quite a bit of talking to get that across.
I’ve also sent a note to a group of Rice friends, many of whom are in Texas.
If love alone could heal, this child would already rule the world. Just know that you’re doing the right things and making the best choices for her. I imaging that must be one of the scariest parts for you as her parents - “what if we choose wrong?”. Blessings to the VDH family from those of us who think you guys ROCK. I never expected you to go public with this. Again, a great choice.
That is the first time I have called a congressman and I am so glad I did!!! Perhaps the most important thing I have done this year… I am SO glad you wrote this. It really got my fur up and I have passed it on to several friends who I suspect will also be on the phone to their congressman. I hope Lege does the right thing. Basshole and I wish your family all the very best—you guys have been in our thoughts.
I saw the same thing happen with my nephew. He knew shapes, he was counting to 10…and then it all just sorta fell away. He’s about to turn 9 now, and it crushes me to see him and think of what could (and maybe should) have been. And if his mother weren’t such a hard-working advocate for him, pushing his therapy every minute, he’d probably be completely lost.
My own daughter is 17 days old today. I know that the incidence is lower in girls than boys, but the specter of autism still scares the hell out of me. Having just dodged the Downs bullet (we were given a 1 in 10 chance, which is abnormally high for our age group), I just wish I was able to stop worrying. But, that’s fatherhood, I guess.
Anyway, just thought I’d let you know I’m with you all the way on this. Oh, as for how I found your blog: your mother and my wife used to work together, a very short while back. I’ve been reading off and on since they gave me the link, but I’ve never been moved to comment before. So, hi. Pleased to meet you.
Just got off the phone with Rep. Dawnna Dukes’ office. I hope this helps.
I admire your strength, Pete.
A little late, but I called Ellen Cohen and I posted about it too.
I hope all turns out well for you and your family, and I’m glad you alerted me to this. I wouldn’t have known to take what action I can otherwise.
Pete my cousin has a son who is autistic and her husband Patrick has taken it upon himself to organize an annual bicycle ride across three states to help raise awareness and a little funding for autism, specifically the Cure Autism Now organization. His response to this as well as yours are so admirable and inspiring. I only hope that if I ever have to experience such a difficult thing as you and T are going through, that I can be half as strong and determined and lucid about it as you have been. Thanks for sharing that and I hope that your efforts have a real breakthrough on the legislative end. Dema is right, your daughter is fortunate to have such a dedicated dad, and I truly believe that one day she will read this blog and discuss it with you.
Pete, I am the mother of a 4yo autistic daughter and have gone through many of the same heartbreaks and challenges you have. I have been to Washington to meet with my Representative about autism and the State of Texas’ DISMAL record on Health and Human Services. His answer was how can we push for more dollars when the State doesn’t do their part, and almost all other States provide resources above Texas for disabled children. We haven’t even applied for a State Improvement Grant! So, I turned my attention to Texas and became appalled. I spent so much time, the first two months of this session in Austin that my Senator offered me a desk! All while fighting the school to provide services, learning IDEA and every law I could, working to pay for her private therapy which insurance doesn’t cover.
I am pained and saddened that this awful disease, (which is not a mental health issue and needs to be removed from the DSM-IV-R so it is covered by insurance) has taken from my family. Her twin brother hands her toys and, says “Mommy if I give her this will she talk to me?” We had to file bankruptcy to cover the cost of her 1st 4 years - SHE IS ONLY 4!, and now are facing divorce. One of the most frustrating things, is I am an educated, upper-middle class person who runs a private social service agency - and I CAN’T HELP MY DAUGHTER. I also pray she will read one day or even speak to me. To hear I love you would make it all worth while. I will definitely contact everyone of my resources in the House and will even personally “appear” in Taylor’s Austin Office. I have found great support from my Senator - Robert Nichols and House Representative Betty Brown, both of their Chief of Staff’s have contacted other peers office’s for me.
Are you also aware that the State of Texas is the only State in the Union to not submit an application to the federal government to receive training dollars for Special Education teacher training, because according to a letter from the TEA Commissioner to a House Representative, “we have a state of the art education system for disabled children, excel in inclusion, and do not need additional dollars!” I have a copy of the letter if you would like it. See: http://www.signetwork.org/grantees.shtml
STATE IMPROVEMENT BLOCK GRANT (often called SIG/SPDG)
Program Description:
The purpose of this program, authorized under the Individuals with Disabilities Education Act (IDEA) Amendments of 1997, is to assist State educational agencies and their partners referred to in Section 652(b) of IDEA with reforming and improving their systems for providing educational, early intervention, and transitional services, including their systems for professional development, technical assistance, and dissemination of knowledge about best practices, to improve results for children with disabilities.
Who is Eligible to Apply:
Under the competitive State Improvement Grant program, established by the Individuals with Disabilities Education Act (IDEA) Amendments of 1997, states can apply for funding to reform and improve their systems for providing educational, early intervention and transitional services. States are required to use 75 percent of the money for the professional development of educators, administrators and related services personnel. Addressing this need, many states combine grant funds with professional development resources from other federal programs. Remaining dollars can be used for technical assistance and disseminating information about best educational practices to improve results for children with disabilities.
THIS MONEY COULD BE USED TO TEACH EDUCATORS ABA - my district didn’t even know what ABA is! The cost could be shared by Insurance for those that can afford private insurance, and TEA and the feds for the many others who don’t have resources - but, much to my dismay, we don’t need more educational resources in Texas! They might have to write a grant and meet grant requirements, and who wants to be accountable these days. Guess our children are not worth it.
Sorry for the long post, but I can relate. B
WOW. YES YES YES! I hear you and I can relate to all! Thanks so much for posting this.
I’m so sorry you’re going through this. Your daughter is fortunate to have such a loving, dedicated dad.