We lived in PA when our son was diagnosed at age 3, and we found that some services were covered by a combination of Medical Access (through a special loophole), early intervention and insurance. Altogether (after about six months or so of paperwork and wait lists) we were able to get one session a week of speech, occupational therapy, and physical therapy. In addition, our son had a 1:1 aide in preschool (about 15 hours a week). Had we so chosen, we could have enrolled him in a "special" preschool for free; we chose not to go that route.
At the time, we thought we were absolutely rolling in services!
Today, as I look at the research surrounding autism and autism treatment, I realize we were barely scratching the surface. There was no mention of behavioral therapy -- or, in fact, any other type of autism-specific therapy. If I hadn't started reading like a fiend, none of Tom's many professional therapists would have mentioned that autism-specific therapies even existed.
Parents today are often told that their very young child with autism should have at least 25-40 hours a week of intensive behavioral, developmental, biological and/or sensory therapy. While some insurance companies, state programs and school districts provide a portion of that level of treatment, there are very, very few that provide it all.
With the cost of a really good therapist at somewhere around $100, private therapy could easily come to over a thousand dollars a week -- or $50,000 a year. I've asked doctors, therapists, and professionals across the US how they recommend that parents manage the costs. Their answers usually range from "mom should quit her job and become a full time untrained, unpaid paraprofessional" to "some people take out a mortgage." Not one has a truly helpful piece of information to share regarding money and autism.
These answers make assumptions that I, personally, find distressing. First, that the family in question has the financial and personal resources to live on a single income. Second, that mom is not only able but also willing to leave behind a career, a social life or exercise -- and to train for and become highly proficient in autism therapy!
Quite frankly, if it were really reasonable for autism therapists to charge $100-$150 an hour -- it shouldn't be possible for mom to replicate those services with no formal training! If it's that easy for parents to just jump into therapy after reading a book and watching a video, then some is terribly wrong with the industry's pay scales overall.
Our answer to the financial issue was, in fact, for mom (who worked at home) to become a paraprofessional therapist (I chose Floortime over behavioral therapy, in part, because I felt I could do it well without formal training). We made use of our local services as best we could, and paid for a few additional therapies (though we found that even an evaluation by a therapist could cost hundreds of dollars!). In the long run, we decided that bringing it all home was the best choice -- and today we homeschool our son.
How do you manage money and autism? How do you feel about the prices charged by therapists? Share your thoughts!
Great topic! I do understand that therapists spend many years being trained and therefore are entitled to the fees they charge but I agree that what is charged is too high for anyone needing long term services. I think someone should consider a sliding scale for long term service requirments.
You actually did optimal care. Play groups and speech therapy are solid core interventions.
While the six month waiting list was sad and not your fault in the least. I’m sure I am not done with waiting lists in the slightest.
I am doing floortime, play with school based interventions. I am doing minimal aba DTT, matching games looking at photos together.
Your question is one that our family, unfortunately, is struggling with every day. HOW DO WE AFFORD THE THERAPIES WE KNOW ARE PROVEN TO HELP AND IN FACT ARE HELPING OUR SON?
I find it unbelievable (and frankly insulting) for a financial analyst to offer the lame advise that you should avoid dipping into tax-protected retirement funds to pay for autism services. If they have no other option to offer, that’s not even slightly helpful. There aren’t a lot of other options unless you are lucky enough to be earning 20-30 times the national average in net income.
We, too, are trying to learn as much of ABA techniques as we can to reinforce what he’s learning from therapists. But there is no way we can do it all. We just can’t.
All this heartache is the backdrop to the discussions happening in state legislatures as to whether or not insurance companies should be legally required to offer families some help. It is mind-boggling to me that this is even debatable!
This is a subject that is very much at issue for me right now. I am a single mother with two boys on the spectrum. My husband left before they were diagnosed.
I am not “low-income”, so I don’t qualify for many of the free services. Right now, the only services that my boys are receiving are through their IEP.
I don’t have the luxury to be able to quit work and become an untrained in-home professsional. And while they were younger, I was working at temporary jobs after having been a “stay-at-home” mom while I was married. They had no benefit of early intervention services.
I know there are a whole host of other services that my children would benefit from, but I don’t own a home to take out a mortgage on. At this point, I am educating myself as much as possible and trying to be an advocate for other services being added through the school district; based on my research. It is slow going. Anyone know how to get money for services out of thin air?
Even if you are “low income” it is hard to qualify for services. I am fortunate in that my son is HFA (actually PDD) but since he looks so “normal” even with an IEP it is hard to get the school system to agree to continue services. They don’t seem to grasp that speech therapy is more than getting understandable speech out of a child. They also don’t seem to grasp that this isn’t something he’ll grow out of like childhood asthma. I don’t have any answers for you, but it isn’t easy no matter what income you have especially if your area doesn’t have lots of service options. Thanks for listening.
That financial advisor was a MORON.
Financially, it may make sense to draw from retirement money. If I take $100k out of my Roth IRA/401(k) now, I’ll have to work 5-7 extra years to make up the difference, beg money from kids, and/or severely cut my retirement expenses. All of these are very unappealing options, but in my case, not disastrous ones.
However, it’s cheap compared to the cost of lifelong care or worrying about how you are going to take care of your kid when he is 50 and you are 80.
When dealing with something of this severity, you need to look at all your options and not immediately dismiss any of them.
In my case, I’m taking a several prong attack, and hoping one or more of them are successful in funding ABA:
- Autism medicaid waivers (Available in Indiana).
- Wife getting job w/ insurance that has Indiana autism mandate. (my employer is self-insured, so doesn’t have to pay mandate)
- Getting a different job with health coverage that covers ABA. Any Indiana-based group health overage will.
- Funded research program at local hospital.
- Drain retirment fund.
- Beg money from relatives.
I am looking at help to. I am a stay at home mom of 3 and my son was recently diagnosed with autism and am learning more everytime I search the net. But My family (of 5) are on the poverty level. But If I go back to work, I pay more in child care than my paycheck will bring in. So I stay at home and do odd things like shop at yards sales and sell on ebay.
But am not sure of exactly what my son is needing. when it comes to his autism. The school is providind some services, even during this summer but am not sure about anything else. Can some one help me out as to how to begin. You can email me at jaustin1976@windstream.net. Any help would be GREATLY APPRICIATED. Thanks ahead of time.
There is a small grant program I’ve found in Viriginia for low income families who have children with autism which offers ABA therapy. The website is at http://www.autismgrant.org.
My son was not diagnosed until he was five and most of the grants require them to be under five. I knew something was wrong but we could never put our finger on it. I kept saying it was like a wire was crossed. My son has been kicked out of several daycares and it just came to the point I had to quit my job to stay at home with him. I have been diligently looking for a part time job working the hours he is in school but it is just not there. I have done some typing at home and that sort of thing. I have 15 years experience as an executive assistant. But I had to take so much time off that it is too hard. Does anyone know of any grants to help with daycare. Just after school care can cost in excess of 125 a week.
I don’t know how to make it work. The best answer for my son is for me to come home and teach him. I am 100 times more effective than any of his teachers have been. Socially, it is responsible to increase his skills to the level where he will require the least support as an adult. Parentally,this is a must. But, I am the wage earner and cannot do what I do, (which by the way is help other people’s children) outside of the home. How can I afford to stay home. How can I afford not too?
i am trying to start respite care facility in columbus MS. howdo i start have been every where sennn every body HELP!!!!wanda turner 2419 23rd ave.north columbus ms. 39701 HELP!!