April 1st, 2009
02:53 PM ET

Autism’s monetary costs nearly match emotional toll

By Stephanie Smith
CNN Medical Producer

When he, without warning, snatched my arm from my lap and nestled my hand into his, I must admit I was startled. My 10-year-old "captor," Darian Sepulveda lightly squeezed my hand, and would not let go. I turned to him and for the first time that day, found myself really looking at him.

In his eyes, I thought I saw glints of struggle and pain - but also a light, a profound understanding of the disorder that has hijacked his brain and his body. Darian, who is living with autism, has not been able to speak since he was 2 years old and he seldom gives people more than a split second of eye contact.

Just before he grabbed my arm, I had finished interviewing his mother, Ada Sepulveda, about the crippling costs associated with the care and therapies for Darian. From the moment Darian’s autism was diagnosed, when he was 2, the Sepulvedas began to rack up bill after unpaid bill. They have been devastated financially - taking out innumerable loans from family and friends, draining their 401(k) accounts. They've exhausted all of their resources trying to pay for Darian's treatment.

Ada is bitter about the almost daily battle she wages against her health insurance representatives to get Darian's autism-related health problems - including colitis and neurological and speech problems - covered by her health insurance carrier.

She was angry when she said, "Why do they do this with autism? Why is it treated differently than other diseases? It's inhumane. You don't tell a person that has a diabetic child, 'Oh well there's no cure for this.' You give them insulin. You treat them."

I posed the Sepulvedas' and other families’ cases to the Center for Affordable Health Insurance, which represents small businesses and health insurance companies. I asked why, when families are paying tens of thousands of dollars out of pocket for autism therapy and treatment, won't insurance companies foot the bill?

Kevin Wrege, a CAHI spokesperson, says that that services for autistic children are provided by each state: At schools, and through early intervention programs. CAHI's position is that the state should continue to help children with autism through the state system, instead of shuffling the burden of care to private health insurance companies. The result of that burden, he says, is that insurance rates will spiral even further for small businesses and individuals.

He added that diagnosis and medical treatment for autism are covered by most private health insurance plans. But therapies that are not definitively proven to help with autism - like applied behavior analysis, which is popular among parents - are not covered.

The coverage problems, according to families like the Sepulvedas, is not the more experimental treatments, but basic medical care. She says her claims have been repeatedly denied for basic medications that are not related to Darian’s autism and for things like an MRI when he exhibits neurological problems.

I turned to Christina Peck, who has 6-year-old twins on the autism spectrum, and who used to work in the health insurance industry. She says while the financial burden can be devastating to families, there is hope.

Peck helps families to work around the insurance companies coding system. She has advised families to, instead of calling an insurance representative and saying, “My child has autism, and we need occupational therapy,'” to simplify, by saying, “My child has low muscle tone, and we need occupational therapy.'”

Peck tends to get involved with families after they receive numerous insurance claim denials. She is trying, family by family, to decode and demystify the health insurance system so that families can get coverage while awaiting a cure for autism. Over the past two years, she has helped families recover $1.1 million in denied claims.

Still, Ada Sepulveda often feels defeated by the health insurance system. She resents that while attending to the exhausting schedule dealing with Darian's medical needs, she and her family also expend so much energy fighting insurance companies.

When they have time to think about it, Darian's family is tormented by questions. What if they had not had to fight so arduously for insurance coverage? Would he be better? Would he have progressed more?

I wondered the same things after leaving the Sepulvedas’ home. Would that flicker of understanding, of light, that I detected when I looking into Darian’s eyes be more brilliant, would he even be able to form a few words, communicate more if he had received all of the therapies his family believes he needed?

That is a question that may never be answered.

What do you think? Should autism therapies be covered by private health insurance or should states provide care and therapy for children with autism?

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

soundoff (7 Responses)
  1. Anonymous

    If parents are not allowed to dump their autistic kids and are legally bound to provide expensive care for autistic kids that will "never" be cured, than states and health care companies should cover their care. If parents had a choice of whether to give up their autistic kid I would think differently.

    April 1, 2009 at 16:20 | Report abuse | Reply
  2. Sheila Bliss

    So who should cover autism therapies? Both the states and private insurance. Both entities have their strengths and weaknesses, and combined their efforts against the autism epidemic will be maximized. Here in MN both entities tackle the problem - it also serves as a "check and balance" so that one entity isn't abusing it's power by coming up with misrepresenative information of the child for the sake of saving money (in the short term, but not in society's long term). A percentage of the costs private insurance and the states incurr should be subsidized by the vaccination injury fund or the vaccination creating companies themselves. I realize that the 8th and so called "final study" has been put out by the National Research Council declaring that there's no connection between vaccinations and autism. But we know how the cycle for accepting Truth goes according to Arthur Schopenhauer (1830):
    “All Truth passes through three stages:
    First it is ridiculed;
    Second it is violently opposed;
    Third it is accepted as being self evident."
    The NCR is part of stage 2 of this process. The research within the NCR study is directed toward the MMR shot, but really with my youngest child, it was the hepatitis shot before ever leaving the hospital. The NCR's conclusions are invalid because they don't jive with the research within their study. Anyway, I know that vaccinations are probably not a culprit in all cases of autism, but it is in a large percentage of them. And so a percentage of the expenses incurred by states and insurance needs to be reimbursed by vaccination companies - which if chosen, can be done through the vaccination injury fund. If there's not enough funding for covering the expense, then that's reckless irresponsibility on the part of the "powers-that-be" (such as our government) for not to see this coming sooner (it was common knowledge in the late 1990's) and "nip it in the bud" before it became a greater and greater epidemic. And so it's our federal government responsibility to get the money from the vaccination companies and in turn fund our states and private insurance companies for paying for the damages the governent imposed vaccination program has caused. On top of that, an allowance should be given to parents to explore alternative therapies as they see fit, with of course no responsibility on the government's part for bad choices parents may make. It's been self-evident that parents being able to do this has made a positive difference in the recovery of their children from autism (the evidence being in the cases where families have pulled money out of all finanacial means to them that exist and have made a positive difference in the recovery of their children from autism). Systematic reimbursement to what families have already spent on their own is also needed. And an immediate government take over of all loans that have been created due to families spending money (because states and insurances wouldn't) should be done. Families did this not of irresponsiblity of any sort - but out of sheer desparate necessity. We as a country have much to pay for because of "ignoring the writing on the wall."

    April 2, 2009 at 10:24 | Report abuse | Reply
  3. Sheila Bliss

    I'd also like to add something regarding these questions: "When they have time to think about it, Darian’s family is tormented by questions. What if they had not had to fight so arduously for insurance coverage? Would he be better? Would he have progressed more?"

    I don't think it's so much a qustion of what if Darian had received all the therapy he needed as what it is "What if we hadn't wasted all that time and emotional and psychological energy trying to get the help that we knew should have been available to us through the state and insurance? What if we would have used all that toward our son instead, and not sought any assistance that we should have been able to use to pay for therapy?"

    I know in my son's case, he would have been better off if I had never put forth the effort to get any support. But now I'm so emotionally and psychologically spent (and finacially), that I know longer have the choice to do it on my own (we even moved out of another state to our current state to escape an even worse situation). Rather than being empowered by assistance like it's supposed to work (that's what insurance is supposed to do! And also the state educational system) it instead harmed our family unit immensely. The goal for us was to be empowered for a speedier recovery for our child and independence away from the need for services (or extra services in school's case) - like it's supposed to work! And instead it sucked us dry and made us dependant for an even more tremendous need for assistance. But it has taught us how to fight, and we will strive to continue to prevail in getting assistance from the entities that have fought us. We will strive to heal as a family and choose carefully for what we can personally provide for both our sons, and when we can provide it.

    April 2, 2009 at 10:54 | Report abuse | Reply
  4. Sheila Bliss

    Anonymous brings up some good points. My grandma gave up her baby once he was too hard to care for when he had hydrocephalus (he missed getting the procedure that'd save him from mental retardation). As I understand it nowadays, it's highly encouraged that such children get to stay in the home and are given the monetary support to care for their child, etc; because #1 it costs less for society; and #2 it's more humane for both the child and the child's family.

    But, I could be wrong about that. Maybe families still have the choice my grandma did: #1 Take care of the child yourself at the cost of your 8 other children living in completely impoverished conditions (for lack of better words) because of cost; or #2 Give up sole custody of your child to the state so he doesn't even get to grow up with his sisters.

    Doing just a little quick research on the internet, it appears that yes, parents of autistic children can relinquish the child into state custody.

    But really, can you imagine the loss of human potential if the mass of autistic children were relinquished over to the state ? !!!

    At the risk of sounding politically uncorrect (ok actually I do it all the time) may I state that it's unbelievable stupid to encourage parents of autistic children to dump the care of the autistic epidemic onto the state by relinquishing custody of the children over to the state. Truly it's wiser to encourage parents of autistic children to keep their children and care for them for society with the monetary help of society. Childhood autism is an epidemic. The loss of human potential if these children were all relinquished over to the state is unfathomable.

    I wish I knew my history better, but I really doubt that parents of children of the polio epidemic were abandoned as what the parents of children of the autism epidemic have been.

    April 2, 2009 at 13:46 | Report abuse | Reply
  5. Margo

    when the epidemic reaches the children of the people who run the insurance companies and the politicians then there will be change. In time those same politicians, judges, doctors, and scientists who say there is no cure and no hope will have a child that has autism in their family/friends. It's just a matter of time and then it will light a fire under them to find a cure.

    April 3, 2009 at 10:24 | Report abuse | Reply
  6. Marlena

    PLEASE – stop talking about our kids as if they are broken and hollow like Frankenstein! Please stop the witch hunt, trying to pinpoint someone or something to sue! I too share the heartbreak and financial drain of raising a child on the spectrum. However, I am at peace, accepting the fact that my son's brain is truly wired differently. I love my son, and thanks to a daily pounding of speech, occupational and behavioral therapy, my son will speak, he will ride a bike, and he will eventually participate in a classroom setting. And with continued commitment, he will contribute something wonderful to this world, just like so many of his older extended family members, who by the way are also on the spectrum! I would name names, but instead I will protect the privacy of my extended family. I promise you would be amazed if you knew how many scientists and engineers exist within our society who were told as children they would amount to nothing!

    The right answer is for the education system to bring down the shields and learn from the private clinics. The education system must begin treating the whole child, not just the "areas that are educationally relevant." Why? Because not everyone can afford private insurance, even if private insurance agreed to pay for the therapies. As a society we can either decide to help ALL spectrum kids before age 5, OR we can lose them forever to the fog of autism. The latter is MUCH more expensive down the road than the former. Being a short sided society, we have trouble grasping this and we continue to lose time that could be spent helping these kids.

    My son's pediatrician made an interesting comment. Out of all the spectrum kids in her practice, mine is making the most progress. Why? She said BECAUSE HE IS HAPPY! Why? Because we meet him at his level and truly enjoy him for who he is, and in parallel do all we can to improve his speech, his coordination and his social function. All you parents who let your kids see your agony – you must find another place to channel your grief! Your child is not broken – your child is unique and has something to contribute – if only you let it happen!

    Is my child fully vaccinated? Absolutely. And so is his younger brother who by the way is the social director in his preschool class. Same womb, same vaccines, same hospital, same maternal diet, same father. My two boys are completely different from each other – from their looks to their wiring. Stop spending your every waking moment looking for something to blame – the biomedical community is taking full advantage of your misguided grief, all the way to the bank! Look at the fight against Leukemia or AIDS. Do the families of those kids wish for something to blame? Of course – it's a human condition – it's especially a parental condition.

    Let the legitimate medical community do its work to better understand the links between genetics and the environment. it could take 50 more years to understand why some people are wired so differently than others. How do you plan to spend the next 50 years with your child? What do you want your child to remember about you? That you spent your life trying to figure out why your kid is supposedly "broken", or that you accepted your child and provided a loving happy home?

    Yes, a lot of spectrum kids have mild to severe digestive or other biological issues. Your job as a parent is to work with your pediatrician to tackle each biological and/or developmental issue in a sound, medical manner. If your child is allergic to gluten then remove gluten from his diet. Don't be fooled by claims of lugging 40 pounds of biomedical quackery everywhere you roam. If your monthly bill to Kirkman Labs is greater than your grocery bill, then you really need to step back and think about who is truly helping your child versus cashing in on you! If you think your pediatrician is blowing you off, then find another pediatrician who supports common sense, vaccines, traditional therapies, good nutrition and most importantly love and acceptance of your child!

    And finally to the media: stop cashing in on our kids! Stop shoving medical misfits in our face on the Larry King Live show. If Jenny and her gang truly had an answer, they would give their books away for free and publish legitimate works within the New England Journal of Medicine, etc. Instead, they get on your show and promote their books and their sponsors like Kirkman Labs. And Dr. Amy Yasko – if you truly have all the answers then please publish the necessary papers – or perhaps you really don't have the answers you claim!

    If the media really cares about helping our kids, then sponsor shows that include families like mine. Show all the kids who are doing just fine without lining the pockets of so many snake oil salesmen. Show the truth about vaccines – that the medical community had to BEG the Pharms to produce vaccines in the first place, and the government had to commit to covering any legal liabilities.

    STOP YOUR ONE-SIDED, RATINGS BASED, BIASED COVERAGE OF OUR FABULOUS KIDS! People on the spectrum are contributing members of our society, and it's high time we advance the global topic of diversity to include our kids versus talk about them as "broken"!!!

    April 5, 2009 at 12:12 | Report abuse | Reply
  7. Sheila Bliss

    Yes, autistic people are wired differently, but are not immune to being poisoned by stuff in vaccinations. My 4-year old was red/green colorblind. Now he is not, after being on metal chelator about 9 months later. (Mercury can cause color blindness). My 8-year old recently diagnosed with Aspergers is physically maimed in his muscles because of mercury (harder to prove than the obvious color blindness his little brother had). I wouldn't change the autism in my children - it's the damage vaccinations have initially caused that I'm fighting to heal, and with some amazing success.

    It's beautiful to be a rare person who can see things differently from most people because of the way their brain happens to work. It's an atrocity for any brain or body to be damaged pervasively by toxins.

    If I were to do things differently, I'd find a different source for vaccinations, such as an ND - with no connection to the regular marketed vaccinations. Those companies haven't been taking responsibility for the damages vaccinations are causing. Thus I no longer trust them.

    May 22, 2009 at 01:15 | Report abuse | Reply

Post a comment


CNN welcomes a lively and courteous discussion as long as you follow the Rules of Conduct set forth in our Terms of Service. Comments are not pre-screened before they post. You agree that anything you post may be used, along with your name and profile picture, in accordance with our Privacy Policy and the license you have granted pursuant to our Terms of Service.

About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.