Money Sure Doesn’t Grow on Trees
March 1, 2008 by Kristina Chew, PhD
Filed under Health
Financial struggles plague families of children with autism, according to a study by Deanna Sharpe, associate professor of personal financial planning in the University of Missouri’s College of Human Environmental Sciences and the mother of an autistic son. Science Daily quotes Sharpe, who says
“It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important.”
Families quoted in the study did everything from skipping meals to depleting their savings and 401K plans, and even filing for bankruptcy, all to pay for treatments including “specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements.” Intensive programs using Applied Behavior Analysis (ABA) can cost $30,000 per year (at least). Other costs mentioned are “compensation and replacements costs for items that were destroyed” by autistic children, and also counseling and medication for parents themselves.
This study, which was published in the Journal of Family and Economic Issues, comes as no surprise: One family has spent $200,000 on therapies and parents sometimes hold fundraisers to raise money for a child’s therapy. As a comparison, back in 2004 it was estimated that it would cost a quarter million to raise a child from birth through age 17. BabyCenter offers a simple tool to estimate how much it would cost to raise a child in 2006 dollars (more than that quarter million).
I’ve never added up everything we’ve spent for Charlie: Besides all of the above, there are lawyer fees; the plumber’s bills (we lived in a one-bathroom house at the time when putting things in the toilet—-duplo Legos—provided great, if fleeting, amusement for one member of our household); fees for particular dentists and neurologists who are not in the network of practitioners covered by insurance; repairs to a beach house we rented; and on and on. Plus there are the realities of clothing and feeding a boy who just doesn’t stop growing: I know I didn’t shrink every one of Charlie’s shirts and pairs of pants, but the sleeves are “bracelet length” and his pants legs are already too short. I always steel myself when the clerk rings up the grocery bill with its so-high-figure; a boy’s got to eat (and eat).
And while there are some things we’ve paid for that I would not have knowing what I know now, I have to say: The gains Charlie has made, and the gains we’ve made as a family of three tightly connected individuals, are priceless and, yes, worth far more than their weight in gold.
We paid for speech therapy, OT, and we put my son in a special school for a year. The school was a GODSEND, it was a program specifically for language delay that focused on providing essentially 6 hours a day of group play/speech therapy. Everything that they did was a great deal like normal preschool, but with a deep understanding of language development and with a 3-1 ratio in the classroom. It was like a preschool with their unique needs and requirements at the center of their program. They completely eliminated my son’s language delay in all but pragmatics – that’s been a tough nut that we’re still trying to crack. But the improvement was undeniable.
And expensive. We took out a student loan on a preschooler. I’ve always been very mindful of trying to not short the other two children in trying to provide assistance to my autistic child. It is more complex, of course, because my other son has ADD and Tourettes. It is always a balancing act.
People are always telling me that I should have taken him off wheat and dairy. No way. Not only is that unlikely to make a difference in his case, the cost and disruption simply aren’t worth it. Nor did we ever think about ABA or other individual therapies: he needs to learn to deal with other kids, how does isolating him at home help? So we have focused on getting into the world as much as we can all manage, and pushing the envelope to the extent that we can.
We have relied on the kindness of the local Lions’ Club many times to help us purchase adaptive equipment for Amigo’s blindness. Raising a disabled child is expensive.
I have not paid for a heck of a lot that I would not have paid for had he been NT. True, he is fairly high functioning, since he has Asperger’s. But he does get and has gotten a lot of services over the years.
Our county has an excellent Intermediate Unit, we have had speech and early intervention since he was 2, and he has had social skills provided by the IU autism team at school for the last 5 years. *I* bought Lovaas’ book and used his methods (not as gospel) while he was young. After reading it, we realized we really didn’t need ABA, because we live that way anyway. Choose what we want you to do, or regret it. LOL
He goes to *our* dentist (those ’special’ ones were a waste of time, money, and worst of all, traumatic). Ours is gentle, and Bug likes him. His meds and doctor visits are paid through his health insurance via the DPW, which I highly advocate ALL parents signing up for if they can.
When the school screwed up with reading, we got 270 hours of tutoring. The school district paid for Fast ForWord, version 1 (we paid for the second version). The school district has loaned him a laptop (which he rarely uses). Now he has a BSC paid for by the county who he sees once a week.
AND he gets free golf lessons with a PGA pro, courtesy of Variety Club’s Golf Buddy program.
There are ways to get a lot (if not all) of this stuff paid for. It just depends on your state, your county, what’s offered, and how much you look. And how much you are willing to pound the school district administration into the ground. Now if I could only get his trumpet lessons paid for….
I’m with Moi, again. Out of pocket, my two kids haven’t cost any more than I would probably be spending on them anyway. We do lots of recreational stuff through our local SSRA at very reasonable rates. I did, however, quit my career (archaeology) as it was absolutely not something I could combine with caring for my sons. But who knows, I might have quit anyway.
Madame, you bring up a good point. I didn’t quit my job because of the autism, I just shifted into part-time gear, and never went back for a full-time once he was in school.
Moi, what is the DPW?
I live in a state (Virginia) that has pretty crappy services and supports for autistic people. We are extraordinarily fortunate that we have been able to pay for our child’s needs by ourselves, but I know many families who are on a years-long waiting list to get help they desperately need. It’s not that these families aren’t looking hard enough or in the right places. There’s just nothing for them until someone either drops out of one of ths slots, of the legislature approves more of them (something I advocate for however and whenever possible.)
I do think we would have spent our share on Charlie, whatever his diagnosis, or lack of one. The biggest costs were for the home ABA — not so much for therapists as for the supervision and consulting. I would still say that Charlie needed it, especially when he was 7-9 and having some really dangerous (SIBs) behaviors. We never had to go to due process but have a lawyer — I was pleasantly surprised when learning that it was “only” 80 or so $$ to rent a cello for 4 months.
From the paper (which is very interesting)
Sharpe, D.L., Baker, D.L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues.
28(2):247-264.
http://dx.doi. org/10.1007/ s10834-007- 9059-6
Likelihood of financial problems was positively associated with use of medical and specialized therapy interventions, lack of reimbursement therein, and having relatively lower income. Use of speech and language therapy was negatively
associated with likelihood of financial problems.
Highlighted:
Expense of specialized intervention strategies; notes common inadequacies of IDEA and insurance coverage which prompts family fill-in. Especially insufficient at school-age and adult.
Other unusual cost
Specialized childcare–both type and length.
Reduction or elimination of work hours for one parent, usually the mother.
Repair and replacement of household items above and beyond typical.
Potential savings
cutting back on family vacations–small.
10% of low-income welfare families have a severely disabled or special needs child. Sometimes basic living needs need to be traded off. SSI potentiallys provide some additional support.
Informal unpaid caregiving 1997 $200 billion/annum v. $32 billion formal home health care and $83 billion nursing home care.
Greatest problems for those families with less than $40K/annum income.
Paper discusses different trajectories of financial planning depending on child characteristics.
——————
Having any kid costs money, so I don’t count things like food or cost of clothing (although where we shop and for what has changed considerably). I don’t really count extra medical because we are all blessed that Eleanor has excellent physical health…and the occasional need for medical and dental specialists has been tolerable, if not completely affordable.
For us, the biggest cost has been therapy and as Kristina noted, the cost of consultants can beggar that of the direct service providers on a therapy team. We also invested in many manuals, books and curriculum materials that would not have been supplied by the service district, and pay out of pocket for trainings and conferences. BTW–I’m not lamenting this, just itemizing what we felt and feel we need to do. We looked at DP, but after the first lawyer’s bill and the poor record of parents prevailing in our state, it seemed more reasonable to spend the money where it would do the most good.
Bink – DPW = Department of Public Welfare. The Welfare department has insurance for kids in many states. Autism is a qualifier for Medicaid. In VA, I think you would go to the DMAS to get it. In PA, we go to the DPW.
I know that the VA school system is very….lacking in a lot of respects. One thing that parents don’t know, however, is that the schools can bill Medicaid for services such as speech, OT, aides, you name it. That saves a lot of haggling over services in the public system!
Regan – that link didn’t work.
I am curious, for those of you who have posted or post comments, what system does your county use for special needs type services? I think that makes a big difference. This is our county’s IU web page. They cover early intervention, vo-tech, and handle a lot of the special needs services in and out of school after they hit kindergarten. They even sponsor the county youth orchestra!
I live basically in Amish country, my neighbors are Amish….so this isn’t something you are finding in an urban area, or a well-to-do area!
BTW – Since I file a schedule C, I can write off a lot of the educational costs in my taxes (for books and the like). If you do that, look into it. Also maybe try to file a long form Schedule A, because you never know what all you can include for your medical expenses. (Turbo Tax is a wonderful thing.
Hi Moi,
Sorry about that. Maybe this’ll work.
http://dx.doi.org/10.1007/s10834-007-9059-6
Here in NJ it’s DDD—-not the most efficient of agencies.
@Regan—-thanks for citing the figures from the article, esp. the statistics for lower-income families and that figure about property damage (though some of what happened to our house is from having an energetic boy).