Schools picking up autism tab
February 11th, 2014
11:55 AM ET

Schools picking up autism tab

The surge in autism diagnoses since the year 2000 has come with a massive cost that’s shouldered largely by the public school system, say researchers at the Harvard School of Public Health.

In what’s billed as a conservative estimate, they say the “economic burden” of an autism diagnosis is more than $17,000 a year through age 17, with medical costs making up less than 20% of the total. The biggest chunk of the tab, $8,610, is picked up by schools, according to their paper, published Monday in the journal Pediatrics.

“The education system is already under a lot of financial strain,” says Tara LaVelle, the lead author, who is now an associate policy researcher at the RAND Corporation. “We need policies at the federal, state and local level to make sure funds are available to provide appropriate intervention.”

The number of children diagnosed with autism spectrum disorder (ASD) jumped 78% between the year 2000 and 2012, according to the Centers for Disease Control and Prevention, although there is an ongoing debate over whether ASD is truly more common or if parents and physicians are simply more aware. The 2012 report, based on medical records, said approximately 1 in 88 children have the disorder. Last year, based on a survey of parents, the CDC said the figure may be even higher – as high as 1 in 50. Most experts believe the actual number is somewhere between the two.

The federal Individuals with Disabilities Education Act (IDEA) requires schools to provide a “free and appropriate” education to children diagnosed with ASD, as well as those with other disabilities. The cost can be high, since many of the students require a one-on-one or small group setting.

In the study, 78% of children with ASD attended public school, compared with 62% of other children. Researchers found 76% of children with ASD use special education services, compared with 8% of the overall school population.

As autism diagnoses surged in the early 2000s, so did federal grants for special education – from $5 billion in 2000 to $12 billion just five years later. More recently, the pace of federal spending has slowed, leaving states and cities struggling to make up the difference.

Aside from the burden on schools, the paper found an ASD diagnosis costs the average family the equivalent of $5,089 a year in time devoted to additional caregiving, $3,020 in higher medical costs and $350 for the cost of therapy and other services.

Interestingly, LaVelle and her team found that most parents spent very little out-of-pocket, except for those whose children were diagnosed as most severely affected. One possible reason: 34 states have passed laws requiring insurance companies to pay for at least some autism treatment.

“This might mean insurance reform is working, if families are not feeling such large out-of-pocket costs,” says Michael Rosanoff, associate director for public health research at the advocacy group Autism Speaks, which helps to push for the laws.

Rosanoff says other studies have found a higher out-of-pocket cost, and notes that the study sample was relatively small – it looked at 137 families coping with an ASD diagnosis and 121 other families – and may have missed the most extreme cases. Some parents report spending as much as $100,000 in a year for assessments, medical care and intense therapy. And a 2006 study estimated it can cost $3.2 million to care for a person with autism throughout their life, taking into account medical bills, therapy and lost economic opportunities.

In making the case for insurers to foot the bill for early treatment, advocates say it saves money in the long run, by reducing the burden on schools and by enabling more people to live independent lives.

One often-cited study found that of children who began treatment before turning 3, nearly half improved to the point where they were indistinguishable from same-age peers.

Melissa Solares, whose son Arturo was diagnosed with ASD in 2012 at the age of 4, says the massive intervention has paid off. “Arturo is doing amazing,” she says. While he initially could speak less than 50 words, he’s now at grade level or advanced academically. “We are looking for him to lose his diagnosis in the next year or two.”

But it’s also true that costs might rise, at least in the short term, if all parents were able to access high-quality treatment. According to the new report, only 31% of families reporting an ASD diagnosis used any kind of formal therapy in the previous year.

Indeed, other studies have found a significantly higher cost burden; one study in the United Kingdom found an annual price tag of $44,063 while another in Sweden pegged the annual cost at more than $68,000 per child.

“The reality is that almost every family or individual seeking needed support and services is unable to afford the cost,” says Scott Badesch, president and CEO of the Autism Society of America. “The bigger challenge we constantly face is how to support the needs of the vast majority of those impacted by autism who have limited resources and struggle each day to get by.”

soundoff (647 Responses)
  1. Rush

    Our Son is on the spectrum, and we spend far more than this in out-of-pocket expenses. We spent $1,400 just to have him properly diagnosed and another $1,400 for an independent review during class. We spend another $2,000 in annual physical therapy and another $3,000 in extra tutoring and therapy for social adaptation. It makes things tight, but we obviously do it because we can afford it...barely. I don't know how families, not as fortunate as ours, cope.

    February 11, 2014 at 13:25 | Report abuse | Reply
    • bros

      Why did you have a private evaluator evaluate your child in the classroom out of pocket, when you could've had the school pay for it under IDEA – Look up Independent Education Evaluations.

      February 11, 2014 at 13:41 | Report abuse |
    • mdouglas

      I agree with you–these costs are low-balled. We live in Ohio, where services for individuals on the spectrum are extremely limited, especially for young adults. We paid nearly $8,000 last year (out of pocket) to a private company who was able to provide intensive services to my 21-year-old son, and have completely changed his world in a positive way. We got absolutely nothing from the public school system except for the bare minimum of services, and a tremendous amount of heartache.

      February 11, 2014 at 14:46 | Report abuse |
  2. Tony

    Schools don't pay anything. Taxpayers do.

    February 11, 2014 at 13:39 | Report abuse | Reply
    • bros

      Taxpayers pay when schools refuse to provide appropriate services, which lead to the parents filing due process against the district

      February 11, 2014 at 13:42 | Report abuse |
    • mdouglas

      I absolutely agree. Dollars spent on early intervention services have been proven to increase a child's ability to become a functioning member of society when they become older,and yet Ohio has cut its early intervention services. In addition, each county board of developmental disabilities provides different services, depending upon where you live. The "systems" leave parents wandering in a maze of bureaucracy for years, that spits you out on the other end as a very defensive and frustrated parent.

      February 11, 2014 at 14:50 | Report abuse |
  3. Denny

    This "study" is out of touch with reality. My 8 year old son has ASD – we've spent thousands on services that Blue Cross/Blue Shield refused to cover. A friend with a daughter with ASD had services covered for a year, then his insurance backtracked (oops our mistake) and strong armed his employer to force him to repay or lose his job. So much for insurance reform. Hope all those parents lucky enough not to have autism in their lives don't accept this and story of child losing his diagnosis as a sign autism is being addressed. Numbers are rising, services being cut, resources drained – with no real discussion of how to handle the wave of children with autism becoming adults!

    February 11, 2014 at 13:44 | Report abuse | Reply
    • HairyGuy

      heya timmy. i'm with you on this one. i am not wealthy by any means (actually live out of a van), but i do applaud those who can abuse the system. that's how life works. the strong take advantage of the weak. all done legally to boot. have a good one kid

      March 27, 2014 at 18:42 | Report abuse |
  4. Historian

    While these kids are in desperate need of services, the school pot of money is being siphoned off for servicing more and more children with disabilities of one form or another. Where is this money going to come from? Taxpayers aren't going to shell out more dough – the money comes from increasing general class sizes and eliminating programs for other students (oftentimes gifted programs.) Our public school system has become a jog to mediocrity, as our resources are more and more spent on students at the bottom hiring specialists, one-on-one aides, and resources like iPads.

    I feel for these families with disabled children, but our priorities have consequences.

    February 11, 2014 at 14:01 | Report abuse | Reply
    • bros

      The money for students with disabilities comes from the IDEA fund. Lets use my district in NJ as an example, an average sized district with 3000 students, around 500 students are on IEPs. The district spends around 11,000 a year per student. It gets around $900,000 a year in IDEA grants. The average spent, lets use the figure from this article, is $8600 on services by the district. This includes the cost of paying for paraprofessionals, OTs, PTs, SLPs, ABA therapists, and special education teachers, as the district usually has a few people on staff, mostly teachers and pars, then the others are hired on an as-needed basis, which is why at every IEP meeting, someone who can make decisions with funds are required to be present.

      February 11, 2014 at 14:15 | Report abuse |
    • B Real

      My child and I are American. If money should be going to educational priorities it should be with her first.

      In 2013 I spent $11,233 out of pocket for extra services for my daughter.

      You want to talk about a race to the bottom.... How many more dollars are going to be wasted on sports programs and art. We're being decimated in engineering, science and mathematics from the likes of India and China because they pursue education instead of "I'm famous" pipe dreams. They compete at education starting at a very early age.

      February 11, 2014 at 14:18 | Report abuse |
    • bros

      "B Real" the arts are incredibly important for students, but I agree with you on sports. Districts shouldnt spend hundreds of thousands a year on sports when they could spend it on better professional development for teachers or better textbooks or better teaching materials

      February 11, 2014 at 15:48 | Report abuse |
  5. mrsmontanez

    Reblogged this on Bipolar Mom, Authoress.

    February 11, 2014 at 14:15 | Report abuse | Reply
  6. kneep

    What I wish people would remember is that schools don't *always provide the best services (SLP/OT/Recource etc etc) to students with autism. They provide what the IEP team decides is necessary for them to access the curriculum and make some progress. They can also make it look like there is progress when there is not really that much. You can fight with the IEP team and do the best you can yeah- but you should definitely seek private services if you feel it could help your child. Do parents realize their children with special needs are being serviced more and more by paraeducators (meaning not special ed trained teachers)? Know that as schools are embracing Common Core Standards, children are being put under more pressure to learn what is developmentally inappropriate and they have less play time. Guess when children learn social skills? Playtime. Seek private therapy if you have to. Don't rely in the schools to decide what's best.

    February 11, 2014 at 18:39 | Report abuse | Reply
  7. amdachel

    CNN: It's still "an ongoing debate over whether ASD is truly more common or . . .simply more aware"?

    I don't recall any of the major networks (including CNN) ever sounding an alarm about autism.

    In fact, every time the rate went up, they've been right there telling us more kids didn't really have autism, it was just more "better diagnosing" by doctors and nothing to worry about.

    IF THAT'S TRUE, "the surge in autism diagnoses" shouldn't be a problem. If these kids were ALWAYS HERE, just called something else, we would have had to provide for them. So why the increase in cost now?

    Maybe we should just get rid of the autism label so the problem will just go away.

    If people think the cost of autism is massive now, just wait till all these kids age out of school and are dependent on the taxpayers for their support and care. I can't wait to hear once again that all the autism is merely because doctors and parents are "more aware."

    February 11, 2014 at 21:58 | Report abuse | Reply
  8. becky

    my daughter is on the spectrum, but very high functioning. she needs social skills therapy as well as intensive in home expressive/receptive language therapy. my insurance pays for none of this. i'm hoping she is considered disabled enough by the state to qualify for state assistance but if not she'll need to attend outpatient therapy. if she could get the right therapy she could lose her diagnosis one day.

    February 12, 2014 at 03:21 | Report abuse | Reply
  9. humtake

    It's a shame that as someone who refuses to bring another life into this world because of all of the problems, I am forced to help pay for those who think having children is a good thing. The least all of you could do is give me some of my money back. I rarely go to the doctor and keep insurance only for emergencies, while others are busy raping the system of money because they know that it doesn't matter what they do anymore...everyone else is now forced to pay for it.

    February 12, 2014 at 07:51 | Report abuse | Reply
    • B Real

      Feel better though, the same kids you don't want to pay for will become the taxpayers of the future that you'll rely on when your working days are done....Who coincidentally won't want to pay for you.

      February 12, 2014 at 11:28 | Report abuse |
    • Eirol

      How can they pay anything, when most of them will be on SSD??

      March 27, 2014 at 18:05 | Report abuse |
    • HairyGuy

      well said. and these autistic kids will grow to be adults who will live for 2/3 generations off welfare. WHO is paying for that? us normal common working folk.

      March 27, 2014 at 18:34 | Report abuse |
  10. tudoreynon

    The research into 'early intervention' cited above in the article and by desperate parents is flawed in my view and likely to be radically re-assessed. The conditions that give rise to 'Autistic' syndromes and behaviors, often coupled with other cognitive disabilities are usually intractable. I am no friend of the Insurance Companies or the current Health Care system but their reluctance to spend money on 'experimental' (to use their term) therapies, ones which in my opinion are not so much experimental but disproved and false; is justified. Desperate and heartbroken parents often attribute changes in the behavior of their children to these 'therapies': they have no grounds for doing so and have no idea how their child would have been without the interventions, better off in many cases I would say.

    February 12, 2014 at 09:52 | Report abuse | Reply
  11. Alecia

    Um, the argument that providing services to special needs kids cuts programs for 'gifted' children? My autistic son has an IQ of 143. Isn't that level of intelligence worth cultivating?? What's your 'gifted' kid's IQ?

    February 12, 2014 at 10:05 | Report abuse | Reply
    • Truly Gifted

      Yes, but will your Autistic 143 IQ kid be able to do anything with that IQ? We had to fight for programs for the "normal" kids in our school district. Money was being sent to the SPED program, but the kids that were regular kids were falling behind. And the kids that had higher IQs were getting bored in class because the main streaming of the "special" kids.
      Money should be being spent on the kids that will grow up and be able to actually go to college or a tech school and then actually USE the education without the hand holding that , it has been proven many of the now graduating "special" kids/adults continue to need. Or are we supposed to pay for their specialness the rest of their lives?

      February 23, 2014 at 21:05 | Report abuse |
  12. h

    I feel no pity for the schools.In my experiance they spend almost as much time trying to avoid helping or even diagnosing ASD students then helping. Usually they wait until theerea major inidicent or crisis with a particular student before him/ her.In my cas they waited until I was 16 to give me the right placement. There are no "ipads" or even computers.When the program needed computers we used the old ones in the shop room next to us.In fact as I recall the program owned 6 computers for 75 students.There were two councilors for these 75 kids.Not every kid with HFA can go an entire day without issue so they were usually overwelmed.In all the school system either perfered to think we didnt exist.This all happened in the 3rd richest county in the country.

    February 12, 2014 at 14:12 | Report abuse | Reply
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    February 12, 2014 at 23:11 | Report abuse | Reply
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      February 12, 2014 at 23:17 | Report abuse |
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  16. Concerned parent

    I have a six figure salary and I am slowly going broke because of Autism. My fortune 100 employer, like most, doesn't cover the gold standard treatment "ABA therapy". I pay $780/mo for my family medical benefits and my employer pays the rest for my $23K/year so called " top-tier" medical benefits package. ObamaCare and all its glory doesn't provide any autism treatment either...big insurance made sure autism coverage was deferred for years. My son's therapy's are now costing over $2K/month out of my pocket after the ins co denies the claim. My son still struggles in the 1st Grade. Now I am going to drain my 401K, and pay tax penalties, to fund a private school with tuition set at $21K/year.

    The real problem is the Federal ERISA loophole that big corporations leverage to avoid state insurance requirements on autism coverage mandated by law into insurance plans. Shame on those CEOs in the Fortune 100,500, 1000 that take walmart's & McDonalds approach by steering their employees that need special services to the schools or other taxpayer funded programs.

    Maybe the French, Canadians, and Brits have it better. I'd rather pay high taxes and get something for my money than be financially raped by the medical and insurance industry.

    February 19, 2014 at 18:08 | Report abuse | Reply
  17. QX11

    I am autistic and a lot of the money that got spent on me when I was in school was not spent in ways that were actually helpful.

    March 3, 2014 at 12:00 | Report abuse | Reply
  18. Babakazoo

    Many kids with Autism grow out of it. Seriously, no joke. Google it. I have had friends watch their kid "grow" out of autistic behavior and you would never know he was raised Autistic. The world is not over when diagnosed. Parents need to know this. They DO GROW OUT OF IT.

    March 27, 2014 at 17:43 | Report abuse | Reply
    • George C

      Its got to be true if you Google it. Mo roon

      March 27, 2014 at 19:53 | Report abuse |
  19. ttpeanut

    Our son was not diagnosed until age 9. We fought with the public school for 2 years and finally paid for our own evaluation and testing. We were denied IDEA twice, but the school was sending him home because they didn't know what to do. Things seemed to improve for a while, but ultimately the school did not help. He hated school, being bullied, and had no trust for anyone. We pulled him out of school and have allowed him to learn his own way. He is very bright and has really taken responsibility for himself and his education, after being given the option to do so. He has job and career goals and can't wait to be old enough to be on his own and find his own success. Early on, the costs for diagnosis, therapy for him and siblings, and struggles for the whole family were intense, overwhelming, and often felt insurmountable; but now, his costs are likely the cheapest in the family. The good is that he wants to be independent and on his own. I worry about the world accepting his differences, but otherwise he is fully capable of anything he wants to do.

    March 27, 2014 at 18:32 | Report abuse | Reply
  20. EnormousGorn

    The amount of money taxpayers pay for special education services has to be immense. I've seen parents of non-verbal high school students with autism come in and demand the school provide physical therapy because the child cannot hop on one foot. How is that going to help so,done in high school? Who the hell goes around hopping on one foot?

    March 27, 2014 at 18:44 | Report abuse | Reply
  21. perspective224

    It is completely inappropriate for a school system to be diagnosing and managing a medical condition, yet that is what has happened due to the fact that the insurance companies / lobbies were successful in pushing this off to the taxpayers. Public school systems in America are incompetent and parents should not be burdened with having to argue in IEP meetings for medical services (such as OT, PT, Speech and ABA). This is a condition that improves with medical treatment, some completely resolve, while others not so much. The real tragedy is that the medical community turned its back on these children.

    March 27, 2014 at 19:41 | Report abuse | Reply
  22. aschealthcare

    public schools paying heavily for the increase in diagnosis for children with autism.

    October 11, 2014 at 02:25 | Report abuse | Reply
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