Whose Planet Is It Anyway?

Tuesday, September 26, 2006

The Cost of Cure

You'll find heaps of statistics (many of which contradict each other) floating around the Web about the cost of raising an autistic child. Some families spend $50,000 per year (or more) for an ABA program. Others go into debt to buy large quantities of therapeutic toys, or to fill their medicine cabinets with assorted biomed products, or to fly their kid to a tropical resort to swim with the dolphins. One thing is for sure, if a parent of an autistic child has money in the bank, there's always somebody around to make a sales pitch.

The essay I Can't Ever Die, on the Autism for Parents website, explains why so many parents are willing to spend these large sums. When they find that their child is autistic, parents often worry about what will happen if the child needs lifelong care. Who will provide for him when they are gone? How can they be sure that he won't end up helpless and destitute in an institution somewhere? This overwhelming fear and anxiety drives many parents to seek cure at all cost, believing that any expense and risk must be justified to save their child from such peril.

Anxiety about the future of one's child seems to be a common experience of parents generally, whether or not the child is autistic. This research study found that parents have significantly higher levels of depression than non-parents and that their depression levels increase as their children get older. The increase was attributed to anxiety about how well the children will be able to take care of themselves.

No doubt these strong emotions had a lot of evolutionary value to our cave-dwelling ancestors by motivating them to ensure that their offspring would be able to survive in society, but in the modern world, such fears often turn out to be both illusory and counterproductive. Let's take a look at what would happen if these parents, instead of spending large sums in a desperate quest to cure their autistic child, chose to put the same amount of money into a trust fund.

I'll assume, for the sake of discussion, that our hypothetical parents are 30 years old when they learn that their 3-year-old son is autistic. They begin contributing $50,000 per year to a trust fund for the child and continue to do so for the next 15 years. Let's suppose it earns an effective interest rate of about 5 percent, after taxes and trust administration fees.

By the time their son is 18 years old, there will be about $1,200,000 in the trust fund. At this point, the parents stop making contributions (they're 45 now, and they need to set aside money for their retirement). Perhaps their son is still living with them, or in a house or apartment nearby, and needs help with some of his daily activities. The money in the trust fund continues to earn interest.

Assuming conservatively that the parents die at age 75 and that they do not leave their son any inheritance by will, other than the family home, he's going to be in good shape financially at age 48, with more than $5,000,000 in the trust fund. Granted, that won't make him wealthy because of inflation, but it will be more than sufficient for a comfortable upper-middle-class lifestyle and whatever household help he may need. His future will be secure, even if he never works.

Now let's suppose that, after a happy and stress-free childhood, he naturally develops the skills needed to live on his own (as many autistics do) and to pursue a career. In that case, his parents will have an ample fund for his college education and for helping him to get off to a great start in his adult life.

And the value of being raised in an understanding and accepting family? Priceless.

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  • Thanks, this is something I think about nearly every day. It's not always a simple matter of saying "Well if I don't spend the money on various therapies I'll have an extra $50K lying around to put in the trust fund."

    Still, your point is well taken and anything that doesn't go toward trying to cure a child of autism would be money better spent planning for his or her future.

    You may get lucky and find out your kid doesn't require the level of support you imagined and the money can go toward things like artistic interests or higher education.

    Anyway, a child's future is a great source of anxiety for all parents but more so for parents of children with disabilities. The responsibility comes with choosing what's best for the child in the long run, not blowing it all on the longshot at the track.

    Spending huge sums on unproven cures is nothing more than gambling and odds are you will look back and realize you have cheated your child out of money that would have helped them later.

    (At this point we'll hear how alpha-lipoic acid is so cheap)

    By Blogger notmercury, at 11:51 AM  

  • Hi NM...

    "(At this point we'll hear how alpha-lipoic acid is so cheap)"

    I doubt it.

    He's got fuck all of any earthly use to say.

    If he wants to keep his alleged post with the NHDDC!


    By Anonymous Anonymous, at 4:02 PM  

  • I agree with what you have written here completely. It reminded me of something I wrote way back in January when I was just starting to blog;

    'Today, I was asked what I imagined Duncan’s future would be like, bearing in mind that we cannot predict the future for any child whether special issue or not. I said I thought he would be fine, he will continue to develop skills and knowledge, his communication skills will keep improving with help from us and I hope he will be happy with himself and find work that he is good at and enjoys. I thought that he could do anything, for example, something in computing or engineering or a designer. I think he will be able to live independently but need help with some mundane aspects of life. I know that this is nonsense because he could end up as a concert pianist or a monk or an astronaut...
    What the heck do I know?! But I’m not too worried. Well, I am a bit and we save what money we can and it is in the back of our minds (Gordon and I) well, Duncan might need it when he’s older. (Compound interest will do more for him than chelation or ABA!) All I know is that too many people end up feeling depressed as they get older and I want him to be happy in his skin and feel loved, supported and competent at what matters to him.'

    It is true that while other people might choose to spend on therapy, we choose instead to save what we can. I really do think that will help him out more in the long run.
    Cause, right now, our main expense with Duncan is buying toy trains (train therapy:-)

    By Blogger Sharon, at 4:09 PM  

  • Hear, hear!

    My family started a trust fund for me when I was little. I'm not Donald Trump or anything, but I'm financially set for life. I also inherited my grandma's house, which is all bought and paid for.

    I've been incredibly lucky, but I can't overestimate the importance of good planning.

    By Anonymous Tera, at 1:13 AM  

  • Well, if all those parents realise how awful institutions are, imagine what could be accomplished if they spent the same amount of energy and a fraction of the funds on abolishing insititutions, and fighting for inclusion of and better services for autistic adults.

    By Blogger elmindreda, at 7:08 AM  

  • Thanks for this :-) Yeah, we all need to think ahead to make sure our children will be supported as much as they need when they're adults. Of course that's true for all kids, but there is more uncertainty for ours. Some will be self supporting, some will need just a little help, and some will need a lot of support. There are no guarantees, we just don't know which it will be--and yes, that's scary.

    I get kinda cranky thinking that on top of that we also have to deal with the static noise from quacks...or even well meaning people with some 'new and improved' but over priced therapy. So much of that stuff falls by the wayside after awhile, and the families who sacrificed so much to get so little are often left destitute.

    Even therapies that sound good (RDI springs to mind) and might even be helpful are SO OUTRAGEOUSLY overpriced. On top of that their profits are jealously guarded by making sure you can't get information about the therapy unless you sign on with the whole *very expensive* regime.

    And you look at your basic toy...lets call it a 'widget'. Change it's name to an 'autism widget' and pop it in a catalogue of PT and OT toys, and suddenly the price shoots up astronomically. Ever notice that? Ew, it gives me the creeps.

    There are a whole lot of people making a whole lot of money off the autism gravy train...it's worrisome to think we're bombarded with this cr@p when we most need to be planning for the future.

    I think elmindreda has an excellent point. Working for inclusion and acceptance is the best way to guarantee our kids have a fighting chance to make their own way. It just makes sense.

    By Blogger Mum is Thinking, at 10:10 AM  

  • Grr...I just realised my comment sounds like I think RDI is 'good'. I should say I don't actually know a great deal about it--the teensy bit I've heard sounds like the kind of activites kids would enjoy, but there might very well be less desirable aspects to it than that. It is just the first example that springs to mind of an overpriced therapy that *might* have some useful information but takes advantage of parents willingness to mortgage their kids future out of desperation.

    By Blogger Mum is Thinking, at 10:47 PM  

  • Great post!

    Not that we've had or spent 50K a year on a cure, but have set up a trust for care.

    I'm glad to see that I'm not the only parent who has a lot of anxiety over this issue. Thanks for writing it!

    By Blogger Attila The Mom, at 10:20 AM  

  • We do spend an inordinate amount of money on therapy. Not just 'conventional therapy' such as with a speech pathologist, but also a trolly full of oddities, things that catch their attention, not necessarily toys, more often the latest obsession. I think it's less 'retail therapy' and more 'panic buying.'
    Best wishes

    By Blogger mcewen, at 7:44 PM  

  • Yikes! $50 k is about what both of my parents make in a year. Add expensive rent and a car that always breaks down and crappy plumbing... That's what the autism organizations should be putting their money on instead of genetic research, for people who don't have the money to pay for needed services or to put into a trust.

    There should be a lot of scholarship programs for autistics. Both for funding education and daily living, and preventing people from ending up in institutions.

    By Blogger geosaru, at 11:55 PM  

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