$6200 Less a Year: Loss of Income in Families with Autistic Children
The April issue of Pediatrics contains a new study on the household finances of families with autistic children. Families’ annual income falls short of average predicted income by as much as $6200; families also spend thousands of dollars on health care and educational and other therapies and services. Economist Guillermo Montes, Ph.D., the lead author of the study, is a senior researcher at the Children’s Institute at the University of Rochester. Some details:
Data collected from 1999 to 2000 showed that each year U.S. taxpayer dollars collectively pay $12,773 of the annual education expenses associated with each child with autism. In spite of this assistance, ASD-affected families still bore the brunt of the financial burden. Between un-actualized income (again, estimated near $6,200) and extensive out-of-pocket ASD-related expenditures – one 2006 national study from the University of Rochester estimated that these families paid nearly $5,300 more than other families – this direct-to-family cost may exceed $11,000 each year.
“More assessment is needed, but in the meantime it’s sensible for health care providers to ask families about financial difficulties and, whenever possible, assist them in accessing the resources they need,” Montes said.
Read the full study from Pediatrics.
Even if one is not paying for specialists and therapists who can cost a few hundred dollars an hour (depending on what they are providing), money just becomes an issue for families with a special needs child. First of all is the matter of work: A child may have so many needs, and need such constant attention, that one parent is simply not able to work. Second, as noted, kids with special needs often need specialized educational therapies and medical treatments.
Some thing just cost more for Charlie: We rarely leave Charlie with a babysitter, but we pay her much more than the average babysitter, that’s for sure. We pay out of pocket for Charlie’s dentist and for some of his doctors (such as the eye doctor), as we have a good rapport with certain doctors who are not in the “network” of our health insurance. We recently discontinued Charlie’s home ABA program in part because of the cost (it was like paying a second rent) and we’ve downsized to one car. And then there are the “surprise” costs from emergency plumber visits for reasons you’re welcome to imagine………
We have been fortunate in that we’ve both always had some kind of job throughout Charlie’s life—I’ve been able to work either part- or full-time. I teach college students and have been able to arrange my schedule so that I teach when Charlie is in school. This was a lot easier when I was working part-time as a writing instructor; now I’m in a full-time assistant professor position (and also have a lot of administrative duties advising students and co-directing my college’s Honors program) and fitting everything in requires constant coordination of schedules with Jim, a good knowledge of how to get in and out of Jersey City so I can rush home to meet the school bus, my parents (who are retired and visit several times a year), understanding colleagues. There have been a lot of times when I have wondered if working was the right thing for me to do and so far I know it has, though I admit I might be less stressed if I were a stay-at-home mom and didn’t find myself spending every free moment of the week scheduling my advisees for fall semester classes and planning a class on the history of the late Roman Republic.
That said: In a lot of ways Charlie costs us little. He is not interested in the latest fad toy or electronic device; he has made himself readily at home in every place we have lived, from the latest rental to my in-laws’ basement. He could care less about what the other kids are wearing, or how old his backpack is, or whether we live on the right or wrong side of the tracks. His favorite items are often things that we have had for a long time: Photos, a certain black shirt of Jim’s, some picture schedules, my CD collection, a crumbled program from a student variety show.
And, obviously, life with Charlie itself is priceless.
Tags: asd, asperger, autism, College, economics, Family, jersey city, Money, Parenting, pdd-nos, Work
15 opinions for $6200 Less a Year: Loss of Income in Families with Autistic Children
Shari
Apr 5, 2008 at 1:25 am
Kristina,
Thank you very much for posting this.
Last week, I was trying to describe this very issue at an organization’s board meeting.
I was asking that conference registration fees for families to attend be lowered.
Some people clearly understood that families who have children with autism may face huge unanticipated costs. Others didn’t seem to.
Today’s comment on AutsimVox will help me better address this issue in the future.
Thank you!
Warmly,
Shari Krishnan
Melody
Apr 5, 2008 at 1:50 am
As a part of my ignorance about American insurance and services funding, as well as a general lack of knowledge of finances, I think it’s only recently that it occurred to me that there might be some things the government doesn’t fund, which didn’t really occur to me.
As for my family, there was debt before I was born, and it increased when we moved to another place that had faulty piping. That, and we have been ill-informed over the years of services and accomodations through the schools, primarily due to a lack of understanding on the school’s part of what my needs are, coupled with the fact that I haven’t found the words to express my difficulties until reading the Internet and blogs of other autistic people.
Just today I had to turn in a form of my parents consenting for me to be assessed in the last month before I graduate high school (every test on the form has been ordered except for the functional analysis ones, though I do still self-injure, if not nearly as much as when I was younger). I couldn’t help but think, “Why on Earth would I pretend like I needed these services? If this were a more perfect world, such exhaustive tests wouldn’t be necessary to get needed services.”
Jen
Apr 5, 2008 at 6:39 am
Thanks for the link to the study- I’ve been hoping that someone would do a study on this for years! I’m actually surprised that the income gap isn’t greater.
We’re very lucky to live in a place where the children’s therapy and education costs are covered either by the government or by my ex-husband’s insurance, but so far, at least, I haven’t been able to go to work. The few times that I’ve tried it’s only lasted a few weeks before meetings/child health problems have interfered, and certainly in the pre-school year there was no way that I was able to work with all of our therapy appointments. Granted, we do have a few more autistic kids than most people, but it’s still frustrating.
I’ve found the lengths that people have to go to in order to keep both parents working have led to some extremely creative solutions- parents working opposite shifts, people changing careers in order to have flexible work-times or work from home, etc. It certainly does get frustrating when financial stresses are added to everything else, and it’s nice to see that it’s getting some academic recognition.
One thing that has been very helpful to us over the years are the tax deductions- I’m not sure whether they’re available in other countries, but at least it’s a start up here in Canada.
Niksmom
Apr 5, 2008 at 8:41 am
Thanks for this, Kristina. I, too, am surprised the gap is not larger. Sure is in *our* household! We once figured out that b/c of Nik’s medical needs I would have to make nearly 200k per year to cover the cost of nursing care, commuting and incidental costs and barely have any left over for a salary of about 30k/yr. Obviously, I’m not working!
Thus far, we have been fortunate that nearly everything has been covered. Then again, we also have not yet begun with additional therapies such as ABA, RDI, or anything like that. To give Nik the full amount of PT/OT thaty has been prescribed by the pediatrician would cost us an additional $8k/yr. OUCH
Niksmom
Apr 5, 2008 at 8:57 am
Forgot to add the cost of meds which many of our kids are on for related seizures, GI issues, etc. B/C there are not generics for certain meds, this can run around $500-700 per MONTH. Add it all up and you can understand why so many families lament the financial burden! But what choices are there, really?
Kristina Chew, PhD
Apr 5, 2008 at 10:18 am
@Shari,
I know what you mean about those conference registration fees—-and the costs are always more due to the efforts that one has to make to keep everyone on the home front happy! Thanks so much.
@Niksmom,
I’ve never felt there was a choice—we always choose what our children need, yes? And honestly the payback is so great (I know that’s a cliché but it _is_ the truth).
Karen
Apr 5, 2008 at 10:18 am
Wow! I think I have been really lucky here. I did decline OT at one point because I couldn’t afford it — at the time it was taking the county eons to do their eval and get it started in Pete’s preschool. Where we live now, getting services Pete needs has not been a problem through the district.
When I had to go back to work 2 years ago due to my divorce, I was lucky to find a local teaching job. It seems like the best option schedule-wise for both of my kids. I know the earning potential is rather low compared to some other careers, but I feel the time it will afford me with my kids (not to mention daycare costs which I can minimize because of my teaching schedule) make it more than worth it.
Joseph
Apr 5, 2008 at 10:28 am
I have 2 problems with these sorts of cost estimate studies:
(1) They don’t indicate to what extent the expenses are wasteful, like expenses on “just in case” quack treatments. I’d venture a guess a large portion is.
(2) It seems bigotted to me to make these sorts of estimates. Would it make sense, for example, to publish an estimate of the extra expenses of families who decide to take care of elderly relatives at home?
Regan
Apr 5, 2008 at 4:10 pm
Would it make sense, for example, to publish an estimate of the extra expenses of families who decide to take care of elderly relatives at home?
———————–
I suspect these are being done. There seems to be little that we don’t study when $ is involved.
A couple out of quite a few analyses out there.
The Cost of Eldercare (unpublished)
http://www.elderweb.com/home/node/891
Fast, J.E., Williamson, D.L., & Keating, N.C. (1999). The Hidden Costs of Informal Elder Care. Journal of Family and Economic Issues, 20, 301-326.
http://www.springerlink.com/content/h3824833t6175h43/
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Adding the 5-11K to the 12-13K for children with autism seems to be a parsimonious figure as a total. There probably is waste, but I would be willing to bet that it is more in the nature of partial implementation or faulty implementation (which costs the same or more as competent service) or the typical waste that happens in anything rather than assuming that it is primarily due to quack treatments. Professional 1:1 of any kind is expensive and as Niksmom pointed out, so are standard prescription medicines, which may not always be fully covered under insurance or HMO.
I’m talking a little out of my hat until I fully read the report to see what and how they surveyed.
Jen
Apr 6, 2008 at 8:39 am
“It seems bigotted to me to make these sorts of estimates.”
This type of study is done on every demographic imaginable- from single moms heading families, to welfare recipients, to “yuppies”, to other disability groups, to children living in upper-end neighbourhoods and families dealing with cancer.
They are done for various reasons- by governments so that they can decide how to fund social programs and create a tax structure to best serve the needs of society (or not, depending on who your government might be). By special interest groups so that they can prove that their members are being discriminated against or that they need more funding, or by researchers who may be studying the special needs of discrete populations, and maybe the stresses that help make things “better” or “worse” for that population, or by companies or marketing departments doing research to find out the needs and desires of their consumers. I’m sure that there are a lot more reasons for studies than I’m quoting here, but just google “financial demographic research” and you’ll realize how wide-spread this type of study is.
If anything, it’s more “bigoted” that they haven’t done more research on the financial costs to special needs families before.
Emily
Apr 6, 2008 at 8:52 pm
When TH was first dx’d, we spent 20,000+ a year for a couple of years on therapies. That has calmed down considerably now that he’s in an excellent public school receiving services. But we also have the experience that Kristina does about clothes and other trendy items–except Pokemon cards. But TH couldn’t care less what he’s wearing…and could be less aware about it.
Paying the Bills: Seeking Insurance Coverage in Missouri
Apr 15, 2008 at 1:50 pm
[…] I can’t of course speak for Meyer, but I kind of suspect that most parents of autistic children do feel they have to do everything they can to help their child do the best she or he can, whatever it costs and the general effect on one’s finances and income. […]
Andrea
Apr 15, 2008 at 5:38 pm
Kristina,
I’m loving your blog. Wanted your readers to know about the petition they can sign to take some action toward a tax break for our families. http://www.PetitionOnline.com/txbrk456/petition.html is the link or I just posted it on my blog. I learned about it from John Michael Carley at GRASP.
Bonnie Sayers
Apr 23, 2008 at 8:00 pm
Good post. The same thing about my son Matthew. He comes home from school and wants his gray adidas pants that are only worn at home. I went online and got them in two other colors, but not the same. He would rather play with the measuring tape and press buttons on his Go talk than other things. With my HFA son who is 13 he was not interested in video games and I got them for him so he would be in the know with other kids. He refers to people as humans and wants to work with animals. He can play zoo tycoon for hours and is proud of his accomplishments.
A Visit to an Old Friend; a New Study on Childcare
Jul 8, 2008 at 3:18 am
[…] a just-published study in Pediatrics by an economist, Guillermo Montes, who’s also studied the effects of having an autistic children on household income. The new study is Child Care Problems and Employment Among Families With Preschool-Aged Children […]
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