A few months ago, IAN produced Part One of a report on family stress and autism. Today, Part Two came out. Of course, one of the greatest stressors on families living with autism is money -- and the lack of it. Many families feel they've sacrificed a great deal on behalf of their child with autism. One father is quoted as saying:
“We are financially crumbling. We put most of our money towards supporting our son’s therapies and biomedical interventions. His behaviors change and his health suffers when we deviate, so we simply do not. Still, we will cap out soon on our home equity line of credit and then we will run up the rest of the credit cards to their limits in pursuit of helping him. The creditors will come after us, and we will press on -- we will never stop helping him…. I am his voice. He is my heart.”With such heartbreaking stories to read, I was surprised by the graph showing how much families actually spend out-of-pocket on autism treatments. The graph is broken down by diagnosis (autism, PDD-NOS, Asperger Sydnrome, "Other ASD").
Not surprisingly, parents of children with classic autism have spent the most money, while parents of children with Asperger syndrome have spent the least.
Much more surprising is the amount: an average of $6,100 per year for classic autism - and less than $4,000 per year for Asperger syndrome. Given that behavioral therapy for autism can easily cost tens of thousands per year, and private schools for children with autism average around $50,000, how is it that most families spend so much less?
Assuming that families like the one cited above are actually spending top dollar, is it possible that many other families are spending far less than $6,000 per year on treatments and programs for their child with autism? If so, are they providing the treatments and programs through public school, insurance and medicaid? I find it hard to believe that parents who have actively sought out, joined, and taken part in IAN surveys are providing their children with no treatment at all!
What are you spending out of pocket on autism treatments? Does the IAN survey reflect your reality? Vote in the poll!
When my child was first diagnosed (classic autism, severe and non verbal), our private insurance always covered what I wanted. If they didn’t, we didn’t have that therapy. For instance, our insurance covers a diagnosis once a year, private speech and O.T and a psych doc for meds and if that psych happens to be out of network they then consider it a speciality doc since they are hard to come by for this disorder and a child. They did not cover ABA so we didn’t have ABA. I also do not live in a state that mandates insurance coverage for autism. Our insurance just happened to be good, and still is.
After researching options, my personal opinion is when finding out I couldn’t afford ABA in any way, I didn’t even agree with it and it’s price tag and there was no saying it’d help my child anyway. So instead of feeling bad about not being able to provide something for my child that every one else seemed so hyped up about, I made sure he had private speech which is something useful to any child with speech delays. I learned about RDI and although I have spent some money towards that, very little compared to that survey. What I find hard to express and except is that dollar price tag attached to a diagnosis that parents are made to feel they must provide in order to see progress or have any hope of a future at all for a child. Not every child will progress as my child did doing the same as I provided for him, however I feel there is such promotion of interventions out there, families do go broke being told this is “the right path”.
Where I have lack of money is food-wise. A pick eater is hard to feed and one day he might like this, but the next he refuses it. I’ve purchased many toys hoping to spark a different interest in other things in vain, and later gave away. As my child has gotten older, I even spend less than I did when he was younger, for I learned what not to buy.
Why don’t we ask how much private speech and private OT costs per hour? I am from Canada and in my neck of the woods it is $120.00/hour for each therapy. I believe in speech and OT however the cost in my opinion is unethical. I think these prices need to be investigated and lowered. Should this happen would the government and insurance companies be more open to coverage that all can access? Would behavior interventions be able to incorporate strategies from OT and speech into their programs?
I think the whole general medical establishment charges way too much to begin with however aside from ABA which is included in many mandated states insurance proposals (along with a yearly cap), many private insurance companies would had covered speech and O.T and all there would had been was a co payment. It all depends on the package the employer chooses for their employee’s. I had 2 private insurances that covered those 2 in the state where I live from 2 different jobs. People get angry at insurance companies, when it’s actually the package that employer chooses which is at fault. BCBS and now Health Partners, people with the same private insurances don’t have the same coverage as we do with either due to employer package.
Speech and O.T didn’t offer 40 hrs either, it was 2 hours a week of each.
If my child had a life threatening illness, I’d borrow from the devil if need be but him having autism, I would not risk loosing my home to provide therapies for him. I think that since parents are loosing so much over trying to provide these things for their children, the cost should give a little. Some one is getting rich off it.
I don’t know how to vote in your survey. I spend nothing on my childrens’ Asperger’s, and never have. If I select “I spend nothing out of pocket”, it might be interpreted as I’m on the dole, which I do not believe to be moral. If I select,”Under $5000″, people might think I’m spending $2500 on average. Good grief, I grew up with Asperger’s and my parents never spent a dime or spent a minute giving me any specific training besides spanking when appropriate. Since I have learned what Asperger’s is, the only specialized training I have given my boys is strongly suggesting to them that they put more effort into considering other people’s point of view, and putting more effort into acting and dressing like neurotypicals if they don’t want to be targeted as a nerd or weirdo.
Dr. Jack Scott at Florida Atlantic University has some data too: http://abablogging.blogspot.com/2009/05/parent-survey-early-intensive.html
Our two boys have Aspergers with comorbid ADHD & ODD (oppositional-defiant disorder).
They have trouble sitting still, concentrating, following instructions, having two-way conversations, expressing themselves, coping with the school environment, and in keeping frustration/anger under control.
If they are to learn anything, and not disrupt the class, they need the one-on-one help of a classroom Aide. Unfortunately, where we live (Australia), the maximum government funding does not support a full-time Aide.
We have to “top up” this funding, and this is only permitted in the private school sector. Therefore, we must pay private school fees (~$30,000 pa for 2 kids), plus the Aide fees ($30,000 pa for 2 kids) to give support for 3 hours a day. Even so, both children have been suspended a number of times.
Children with autism frequently have medical comorbidities, including autoimmune dysfunction (e.g. asthma & eczema), glue ear (otitis media), & nocturnal enuresis. Our kids have this and more (vitamin D deficiency and anemia). We have to pay for daily eczema treatments, asthma medications, 3 grommet operations, 2 teeth operations (general anaesthetics), hospital admissions for asthma, nightly pant nappies, plus fees for doctors and psychologists.
Prior to the school years we had to pay “top up” fees for early intervention, speech therapy, & OT.
I have to work full-time to earn enough money, and this means we also have to pay for holiday care and after-school care (which if I worked part-time I wouldn’t have to do). This makes around another $13,000 per year (for two kids).
We must spend around $100,000 pa & this takes all my salary plus a large chunk of my husband’s. I am stressed and exhausted.
Why do we do it? To give them a chance to get an education, and provide the possibility for at least a semi-independent life in adulthood. (Published data suggest that “even” with Asperger/HFA, <10% will lead fully-independent lives.)