Applied Behavioral Therapy, Occupational Therapy, Physical Therapy, Speech Therapy, and Social Skills therapy are all considered, even by the most mainstream practitioners, to be important and even essential treatments for children with autism. In fact, most practitioners recommend early, intensive therapy for children with autism -- sometimes as much as forty or fifty hours a week.
Every one of these therapists, depending upon their location, training and experience, charge between $35 and $150 an hour. Most charge hundreds just for the evaluation they require prior to treatment. Few of these therapists can accept ordinary health insurance, since such therapies (with the exception, sometimes, of speech and physical therapy) simply aren't covered. That leaves parents with a potential shortfall of thousands of dollars per week.
Doctors, for the most part, remove themselves from the equation once they've diagnosed the problem and recommended a course of action.
How do parents pay?
In some parts of the US, early intervention programs run by local school districts offer specialized programs for children with autism. Some of those programs include a range of therapies. Very, very few include the "gold standard" program recommended by pediatricians -- 40 hours a week of behavioral therapy. Even fewer offer solid developmental therapy. None offer the more unusual therapies available, such as auditory integration, rapid prompting, and so forth. Recent court cases in Ontario and elsewhere are closing the door on parents who try to force districts to provide even the "doctor approved" therapies for their children.
Some parents simply have the cash to pay private therapists to work with their children with autism. Others learn to provide the therapy themselves. Still others find volunteers. There are a few grants available, but even the largest would pay for only a few weeks of services.
So what about the families that don't have the cash? What about single parent families, or lower-income families who don't have the luxury of simply living on one (minimum wage) income while a second parent (or grandparent) takes courses and then dedicates themselves fulltime to providing high-quality therapy for their child with autism?
For those of you out there who either provide or have found ways to access the therapy recommended by medical professionals: how did you do it? What would recommend to the Dad who is about to risk his life to pay for ABA?
There are plenty of resources available for people to learn how to do the necessary therapies on their own. Applied Behavioral Therapy, Occupational Therapy, Physical Therapy, Speech Therapy, and Social Skills therapy all have books written about them which people can use to get the basics. With a little study, time and effort, no one need give up a kidney, and no autistic needs to suffer.
This is quite sad. Although a kidney could save a life for one that needed it, I had thought it illegal to gain profit from selling organs.
Another sad thing is many kids can do well without ABA and there is no guaranty of which kids would benefit from ABA as apposed to any other intervention. For instance Occupational Therapy can be considered less evasive and there can still be good results, and it’s more affordable and many private insurances cover it. RDI is also parent-based, eliminating that spendy therapist and more and more schools are using RDI.
Some one many years told me something, which I tend to tell other’s often. There are many options of intervention out there and one must weigh which will be best for their child while still maintaining not going into bankruptcy. Putting your family at risk of living in a shelter or car is not an option, or complications of surgery. What if in the future the one kidney fails this dad? He now has no spare.
I was a single parent for some time and although my child was getting County help, SSI and Medicaid, still ABA was out of our reach and the school system did not offer it at all. Our insurance from my sons dad did cover O.T and Speech, and one could fight the insurance for that coverage. Lisa is correct, upon diagnosis the doctor wrote 40 hours intense ABA, but never suggested how to make this happen. For my son, it never did and he progressed quite well without ABA.
I wish this dad the best of luck and believe his intentions are well noted to be of the up most efforts any parent can do for their child. My only offering thought is the back up for when that donor money is spent, where does one go after that? Please reconsider all the options of interventions there is available.
I too agree that this is so sad. I would tell say that while treatment is important, there are resources which he may need help finding, but they are out there. I also feel like why risk your life for therapy since the child may receive the therapy for autism needed but in the event the father has complications and dies, the child will need different kind of therapy or more therapy to handle that. Where will the family be with a missing key member. I don’t believe the price would out weigh the cost in this situation. I woudl tell him, please find another way.
It is true that, unfortunately, ABA programs can be very expensive. Schools often provide speech and occupational therapy, but they usually won’t provide more “alternative” therapies because they are often not supported by research as being effective.
However, I think that Tom is right, that parents and family members can often do many interventions themselves. In terms of ABA, I would still recommend that a family hire a qualified behavior analyst to supervise the program and occasionally check in with the family, but parents can do a lot to help their childen learn with this method instead of hiring many staff members.
The next issue of Positively Autism will be about ABA, and will hopefully be helpful to parents and teachers wanting to utilize this method. These will also be featured in the newsletter, but here are my recommendations for resources for an ABA program:
Book: Principles of Everyday Behavior Analysis by L. Keith Miller
Book: Overcoming Autism by Lynn Kern Koegel and Claire LaZebnik
Book: Behavioral Intervention for Young Children With Autism by Catherine Maurice, Gina Green, and Stephen C. Luce
Website: Christina Burk’s ABA Website – http://www.christinaburkaba.com/index.htm
Website: Understanding Problem Behavior: An Interactive Tutorial – http://www.ed.arizona.edu/pbis/index.html
Nicole Caldwell, M.Ed.
http://www.PositivelyAutism.com/
Parents need to provide for their children, of course, but we have to take care of ourselves (our own health) so we can take care of our own. Recently, the “therapy”—piano lessons—-that cost the least (well, we already had a piano) perhaps did the most for Charlie. There’s a lot a parent can learn to do by reading a book, and I’ve always learned much from other parents via email lists and personal communications.
I have several different takes on this.
My first would have to be that the father was so desperate to make sure that his son had the best of whatever is available for children with autism that he was prepared to make whatever sacrifices that had to be made to finance the best.
My second would be that parents have been so brainwashed into believing that without all of these therapies and interventions the out look for autistic children is so bleak that this Dad felt compelled to take drastic action. This is not so hard to believe given the adverse publicity that now accompanies autism, which is portrayed as something which needs to be defeated, eradicated and cured. Certainly not the types of words to reassure parents are they?
And my third take is that he simply can not accept that his son is not ‘perfect’ whatever perfect may be.
I rather hope that my first take on this is the right one. But even so you have to wonder what has made this guy so desperate.
If I’m understanding correctly, it seems that most of you are saying “professional therapy isn’t essential – DIY therapy may be just as good a choice for your child.”
To be honest, I can’t help but agree — but then again, I have a child with relatively mild autism.
I’d be interested to know what the professionals think of this perspective!
Lisa (autism guide)
Lisa, you said:
If I’m understanding correctly, it seems that most of you are saying “professional therapy isn’t essential – DIY therapy may be just as good a choice for your child.”
As an educator, I think that this really depends on the family and child’s needs and preferences. However, if a family decides to go a specific “intervention” route, such as ABA or speech therapy, I think that at least some professional guidance is important. Often these interventions are more complex than most people realize, and it is very helpful to have some guidance and professional opinion.
Nicole Caldwell, M.Ed.
http://www.PositivelyAutism.com/
Actually I am suggestion ABA may not be a guarantied intervention for all children. Much of it also has to do with the actual therapist and that connection made between the child. A mis-match would not have a good outcome and that is true of any therapist of any intervention. My concern would be if you donate a kidney, and ABA doesn’t show positive results, and this is true of many kids, where does this parent go from there? How does one deal with those emotions after donating an organ?
My son was diagnosed with severe infantile onset autism and I suppose ABA would had been the first thing one might suggest to a parent but that was never going to be feasible for us. ABA is not so complex that a parent couldn’t do this, either and most times parents would need to continue this after the therapists leaves. I would also agree with the brainwashing that goes around that ABA is THE intervention. I would disagree that ABA is the end all last hope and I would hate to wonder if a parent might think that, and that be the reason for an organ donation. Many kids progress without ABA, my child did. There are many more affordable interventions to look into, along with fundings.
While I feel so sorry that this gentleman is considering going to such lengths, I am not surprised at his despair over finances.
What I am surprised about is that no one who has commented so far has apparently had financial difficulties paying for therapy for their children. Either that, or they felt they were able to do everything themselves.
In my personal life, almost everyone I know, including myself, who has children on the spectrum has been denied even basic, traditional therapy coverage by their insurance companies(ST, OT, PT we’d never even consider asking for ABA!) The most we could get was early intervention until age 3. After that, it was pay out of pocket.
And for us, yes, that ran tens of thousands of dollars a year, at first. We had some savings which we used, we’ll worry about retirement later. I have friends who have taken out second mortgages on their homes. I am not talking about doing this for alternative treatments, just the basics (ST, OT etc.) Now our costs are less, because our son is doing better. But no one can predict that, as another writer pointed out.
As for school provided services, I think that varies widely depending on what state you live in and your school district. Where I live, what is offered at school is not enough. Though it is better than nothing.
I truly feel for this parent. Yes, you can be self-taught, and we supplement professional therapy with our parent-based at home therapy for ST and OT. I too am self-taught Floortime.
But when the kids are young and newly dx’d, or have more challenging behaviors, sometimes DIY is not enough.
I am not saying I feel this gentlemen should resort to his idea, but I feel compassion for him and I am just surprised more people have not written to say they have had serious financial challenges. Every single one of my friends has had problems paying for basic services that are not covered.
Katherine
Many people go through financial struggles and although our insurance did cover private O.T and Speech, that amounted to 4 hours a week. I suppose I could had attempted to pay for that out of pocket however I was still financially struggling since I had to leave my job 2 days a week and lost pay. So it probably evens out. We were fortunate in the fact that prior to me leaving that job with that coverage, I was at the meeting where all the employee’s made their input to what they wanted on their benefits. At the time I wasn’t even pregnant. If it wasn’t for that company, I doubt we’d have that well of coverage, and I doubt employers often ask for benefit feed back.
It is easier if one has to fight a insurance company for those basics, but much harder to get private insurances to cover ABA and if some do, it’s only 25 percent. Most times, ABA is going to be an out of pocket expense. A very good point made is the common known therapies not covered by private insurances, and those struggles how ever for years some have said don’t add the diagnosis when submitting to the insurances and some say it doesn’t matter. The long argument of those basics for autism is the insurance companies keep throwing it to educational needs and vise versa. These are things current people are trying to change per state and nation.
I am feeling for this fther ..who is obviously desperate for help for his child.
I have an insight as i have one of my sisters who has had a live donor transplant both donor and recipient are well have recovered well but not all problems are solved by it..in this country it is illeagal to receive any more than expenses but will the child cope without his dad ..will it add to his therapy requirements there is quite alot of time and medication involved..and a bit of recuperation required afterwards.
It must be terrible in your country to always have to pay for care and therapy and worry where the money or the insurance cover is coming from!!
I admire this father for being willing to do whatever it takes to get help for his child. It is a disgrace that the country that we live does not recognize this epidemic of children on the spectrum. I have severe financial problems and could not afford any type of out of pocket expense. The therapy that the school was giving to my son was not helpful at all, not appropriate to my son’s needs. We are now home schooling and SSI pays for Speech 2x a week and we are on several waiting lists for OT. If you have any child graduating college and trying to figure out what to be please lean them towards becoming a OT or SLP, we need more of them. I wish this family the best of luck and think it is sad that we as parents are driven to choices such as these due to lack of insurance or insurance not willing to provide these services. Do they think are children are just going to grow out of Autism and be normal? They need to realize the better therapy they receive now will make it less likely they will need long term services later. JMHO
If you’re willing to give up an organ, you’re likely willing to move. So, move to a part of the country that pays for these services. One state is Pennsylvania. Even at middle or high income levels, you can receive both in-school and private therapies and medical treatment as long as your child clearly demonstrates the need. I’m assuming this child would. Our children have received these services from the time of diagnosis (ages 2 & 3) and continue to receive those services (now ages 4 & 6). The state picks up what my insurance does not pay. There are good medical centers here to guide your treatment — like the Family Hope Center near Philly and the Childrens Institute near Pittsburgh. Dr. Scott Faber at the Childrens Institute is very highly regarded. He has a long waiting list. I’d much rather move to another state than give up an organ. And, in fact, if our doc relocated to another state, we’d follow.
Although the father is obviously concerned with the welfare of his child, his solution is not realistic. Putting aside the legal and ethical aspects of donating an organ for money, I don’t think you can get that much for a kidney to pay for an ABA program for so long that the child would either recover or show significant progress–that would probably take years and cost thousands of dollars. What happens when the money runs out? Does the father then donate a lung, etc.?
Dear Dad who wants to sell his kidney to provide ABA to cure his son,
If you could tell us, where tell us = parents that are older than you and have parented children on the ASD spectrum for longer than you have , so they have some experience(s) you may not have yet but could prove useful to you – tell us on this forum what exactly is the behaviour of your child that prompted you to want to sell a kidney?
Was it a promise of a cure via ABA and as a loving Dad you felt the need to fulfil it even it is costing you a kidney?
I am convinced at 43 years of age that at least one of the parents who are reading this forum can give you some pointers to help your kid and they would not demand your kidney.
My son was non –verbal and ate earth – when he was young…..
I have showed him this letter before sending it to you.(he is now 19)
His question was ‘Do you think the Dad” will pay attention to what you are saying?
My reply was ‘I don’t know but I will try ‘
Lisa is a guide to what other people write about autism while trying to understand her own son Tommy who is on the ASD spectrum. It is unjust to tell her ‘Now I have the money – where is the best ABA therapist?’
My son said ‘Keep your kidney’
To my perception you willing to sell a kidney = I adore my child I would do anything for him.
Keep your kidney in the knowledge that you being healthy is your best asset. You are a husband too!
Learn how to connect with your child …
Read ‘Making Lemonade’ by Judy Endow
She was 49 when I guided her
Read autism the eighth colour of the rainbow
And if you are still stuck
Write to floricainteraction@yahoo.co.uk
Just do not sell your kidney
There ar eother options besides selling your Kidneys. I understand that you find this to be the best option, so do I. Take it from a father who moved twice to recieve these services for my child because I would not except that it was to expensive and may not work. Anything that gives my chils a 50% chance at a “normal” life is worth what ever it takes.
California offers ABA in the school half day, then in the home thru regional centers for the other. It totals 40 hours a week.
South Carolina requires private insurance to pay for ABA, as long as your child is dx before age 8, and will cover your chils until age 16 up to 50,000 per year.
Texas requires private insurance to pay for ABA for ages 2-6
Pennsyvania offers ABA thru Autism centers and in home.
Indiana requires private insurance to cove autism treatments up to any other catostrophic disease.
New Jersey provides multiple routes to pay for ABA.
Cleveland Ohio, school districts will pay for in home services after losing multiple IEP due process hearings.
Try these, move to a more open mided state where they understand that offering this therapy save them money in the long run. To the people who say there are no garauntees, I haven’t seen a child yet that hasn’t progressed with ABA, 50% is full “recovery”, the rest make huge gains. For those who feel ABA is being rammed down their throats, is this guilt speaking. Please do not discourage a parent who is trying to help their child because you couldn’t afford to. Someone like ou almost ruined my childs life too.
In a nutshell, I recommend that the father moves to Allegheny County, Pennsylvania (Pittsburgh area) where our resources & funding for autism are awesome. My two children with autism get wonderful therapies (over 40+ hours a week each— which is all needed and warrented) including a lot of ABA through wrap-around as well as Speech, OT, Developmental, and Physical Therapies. I could go on and explain more but do I need to? I do not know what services and funding are like in other areas across the nation. I have heard, though, that where I live is outstanding for Autism Therapies. (I am also employed in the mental health field.) I have zero complaints about our services and feel very grateful for them. If it is not realistic for that father to move, I suggest that he invests in some good books on ABA (I could recommend some- perhaps they are available at a local library) and a few simple therapeutic toys. Everyday household objects may be used for ABA & sensory input- as well as inexpensive things such as crayons of primary colors, Play-Dough, bubbles, building blocks, an ordinary swing for your yard, etc. Do NOT buy toys that require batteries, light up, make noise, etc. Stick to the simple toys that the “Baby Boomer” generation grew up with. ABA is actually very simple- so simple that you may feel like you are doing it wrong. A “typical” child can learn things from they natural environment. A child on the Autism Spectrum usually needs everything broken down into extremely simple steps- so simple that we would not even normally think to do them. (I know- I keep using the word “simple.” But I feel that is the best word to describe it.) While it is best for a therapist to conduct ABA, a parent could do it. It should be sucessful if they can do it 5 days a week for at least 3 hours a day. I know, easier said than done. But it may be more practical than risking your life selling organs or body parts.