What Are The Costs?
October 13, 2007 by Kristina Chew, PhD
Filed under Health
A reader recently asked:
I am new and researching the average costs of raising and treating an autistic child. Specifically what one could expect to pay for PT, OT, Hyperbaric Chamber, speech therapy, ASB, DAN, and any other therapies anyone wants to contribute. They don’t have to be specific numbers, just a range is fine. Any help would be appreciated.
I looked up providers for some of the above treatments on the web, such as the Hyperbaric Medical Center in New Mexico; the Defeat Autism Now! (DAN!) conference (one day at the conference is $135, three days is $350, for parents: practitioners are charged $425 for all three days and $150 per day, not including fees for the hotel, meals, and transportation to Anaheim, CA). I may not have checked every aspect of each website, but costs tend to not be listed.
It does seem that it would be useful for parents to know this sort of information prior to making appointments, going through a detailed intake process, buying plane tickets to see practitioners far from where they live…..
Mike Stanton has a thoughtful analysis of the costs of autism, and of how such figures such as “3.2 million US dollars or 2.4 million UK pounds” can be used to alarmist, and not necessarily helpful, effect:
Presenting autism as a drain on the economy to frighten governments into funding more research into possible prevention and cure does nothing to help existing autistics and their families find support services in the here and now. And if the lifetime costs are so high where is this money going? Why are autistic people and their families so often left leading miserable lives?
Keeping in mind that my son is 10 years old, speaks in phrases of a few words and not very often in sentences, has inconsistent articulation, and various cognitive and behavior challenges—-an hour of therapy for him starts (starts) at about $60. That may sound high or low, depending on where you are living (we are on the East Coast not far from New York City and the cost of living is high)—-by way of contrast, when Charlie was doing an intensive home ABA program when he was just over 2 years old and we lived in Minnesota, we paid his therapists $10 an hour. Those therapists were college students who had never done ABA before; now, all of Charlie’s therapists have extensive training and have already graduate from college.
By way of comparison, I’ll note the $9,500 that former Dartmouth admissions officer and “most expensive college coach in the country” Michele A. Hernandez charges for her summer application boot camps in Manhattan and Santa Monica, California. Parents paying $9,500 to send a child to a “camp” to learn about how to get into an Ivy League college—-whose total costs for a year can be over $40,000—is something I find frightening. But dollars, and time, and sweat, and tears, and laughs spent on Charlie so that he can have a good life: That is where I am putting my money.
If a parent spends money on useless claptrap such as HBOT I can see why the “costs of autism” are high.
For Roxanne:
It can indeed be expensive, but there are many options out there for your friend. Here are some real-life figures:
We pay a little over $57.00 for each 1/2 hour of speech therapy for our 3 yr old daughter. (Insurance will not pay a dime. If new legislation passes, however, this may change.) She receives additional speech therapy, plus PT, at her special-needs preschool which is run through our school district. It costs nothing.
I don’t know where your friend lives, but here in Ohio, the Dept of Mental Retardation/Developmental Disabilities (ODMRDD) will get you a case worker, who can then hook you up with other services. For example, a friend of mine was able to receive 15 hrs of free ABA per month with a therapist who normally charges $125/hr. The Ohio Dept. of Educ. also offers a $20,000 autism scholarship. This money allows parents to opt out of their local school district and pay for private schooling. $20,000 will not get you far, but in my town it pays for most of a half-day autism preschool (which costs $22,000). This money has absolutely no strings attached – if your kid has a diagnosis, the money is yours.
Also, your friend’s school district is obligated to provide her son with a free appropriate education. If the district does not provide a special-needs preschool or other adequate schooling for her son’s needs, she may be entitled to have his private schooling paid for by the school district. If that is the case, she should contact an attorney to discuss her options.
We never paid for therapies. For 2 months, my son received 2 hours a week of Speech and some other therapy. I know they were about $70/hour that Indiana covered through First Steps. AFter he was 3 he went to public preschool. It wasn’t therapy so much as integrated play (10 kids 1/2 were special needs, 1/2 were typical). In California, we enrolled with Regional Center and he received life skills therapy. One hour every other week that was really babysitting. One man was a teacher’s aide at the local special ed school. He was great but frustrated by working for a private contractor. He left for a non profit. The next lady was nice but was a MSW specializing in traumatized children. So, she played those games that are designed to get kids to talk about their feelings and abuse. It was weird. I believe those were about $70/hour too.
Since kindergarten, he’s received about 15 minutes of Speech a week. Now he’s getting that 15 minutes with a group.
The most effective therapy has been cartooning which I’ve done on scrap paper with pens. When I started, I traced his coloring books with crayons.
The most expensive aspect of having an autistic child was moving to California so we could live in a district that worked.
I’ll note the $9,500 that former Dartmouth admissions officer and “most expensive college coach in the country” Michele A. Hernandez charges for her summer application boot camps in Manhattan and Santa Monica, California. Parents paying $9,500 to send a child to a “camp” to learn about how to get into an Ivy League college
I don’t find it frightening. I find it appalling and disgusting.
I hear the rattle of the helicopter parents in the distance.
Sheesh.
Turning back to the actual subject of your post:
I look at it this way: an unremediated child would have to have total life care in an institution, at a cost of $X. Every dollar invested in education / remediation / therapy means that the total life cost should be reduced by some multiple.
Another example is drawn from the economic analysis of early childhood education programs for low-SES children
http://www.epinet.org/content.cfm/books_exceptional_returns
There is a strong consensus among the experts who have studied high-quality early childhood development (ECD) programs that these programs have substantial payoffs. Although the programs vary in whom they serve and in the services they provide, most ECD programs offer wide-ranging education services as well as health services (such as immunizations and health screenings) and nutrition services, typically for children younger than six. Many also provide adult education and parenting classes for the parents of young children. Investments in high-quality ECD programs consistently generate benefit-cost ratios exceeding 3-to-1or more than a $3 return for every $1 investedwell above the 1-to-1 ratio needed to justify such investments. Even economists who are particularly skeptical about government programs make an exception for high-quality ECD programs. Follow-up studies of poor children who have participated in these programs have found solid evidence of markedly better academic performance, decreased rates of criminal conduct, and higher adult earnings than among their non-participating peers.
This is of course evaluating decisions through the lens of economics, which some parents find appalling (”what a heartless way to think about my child!”), but every family (except those in the very, very stratospheric income levels) faces trade-offs in decision-making.
Thinking of some of the ‘therapies’ touted for autism, I’m reminded of Dick Dalton’s post, The Fleecing of the Autism Community’.
http://specialed.wordpress.com/2006/03/20/the-fleecing-of-the-autism-community/
I would also like to point out that a “therapy” that is low-cost, but ineffective, has an actual high cost: taking up time and attention that could be devoted to a procedure that has more efficacy.
The PAM, IoP, Mike Stanton, and Joseph’s cost estimates are only educated guesses. The educational bias of the entity will reflect the subjective determination on the data presented and the weighting that data will have in the total calculation of “cost”. Societal and financial “cost” will also be a determination based on the educational bias of the estimator. Autism is a spectrum disorder covering a spectrum of societal and financial costs. No “One” number will determine the costs, just like no “One” cause can determine ASD.
Question for CHUCK:
Sorry, Chuck, but I’ve a quick question if you don’t mind: A week or so back we were discussing educational labels. I’m urgently wondering how one would go about getting a DSM dx. set-aside, if you will, and educational labels put into place (eg. dyslexia among others)? To be more clear, how do you get the school to address specific learning disabilities, for which there are educational programs and materials, as discrete entities which need addressing when they’ve already “categorized” the student as ASD and are leaving the educational plan amorphous, direction-less and without any real academic solutions?
It might be useful to set next to that the amount it costs to raise a non-autistic child. As I recall, you’re looking at about $250K-$1M to get to 18, depending on region and standard of living, and then you’ve got college (unless you’re letting the kid shoulder the whole burden). There’s usually a net flow from parents to kids after college, too. Also, I’m guessing that few parents whose first child is autistic go on to have many more children. So you may as well just look at an autistic kid, in cost terms, as two or three kids.
Not so dramatic, then. Kids are wildly expensive no matter how you slice it. (I will fall down on the floor dumb with shock the day that single fathers’ groups recognize that.)
Volunteer,
Here is what we (me, my wife, and my son’s teacher’s) do.
We write each individual short and long-term goal to address a specific need.
We address every single one of my son’s specific needs. I think the current IEP is 76 pages, but I will have to check on that.
My son’s educational level seems to be rather insignificant while we are designing the IEP.
The I in IEP stands for Individual for a reason.
Thanks very much Chuck. That’s very, very helpful information.