I’m thinking about Assistive Technology (AT) lately. This is the time of year when we look at our budgets and buy things for next year. With the miniscule supply money we have, it makes it difficult to choose. Anyone who knows anything about disabilities knows that the minute a thing becomes useful to people with special needs, the price automatically doubles. It’s almost like vendors figure out that they have a desperate consumer base and they are determined to squeeze everything they can out of them.
For instance, I’ve always bought a lot of ground turkey instead of hamburger because it’s tons cheaper and has tons less fat. As soon as they slapped a label on it that said “Gluten Free Casein Free” on it, the price went up $.40 a pound! As if printing those 4 words suddenly increased their overhead or something. This is another reason why I’m such a skeptic, and an angry one at that, because if you are a parent of a person with disabilities you are going to have other people’s hands in your pockets all the time.
As I look through various catalogs, I see stuff costing hundreds of dollars that might only be $25.99 in the regular retail marketplace. And the more severe the disability we’re marketing to, the higher the mark up. Various talking, vibrating, flashing toys for $50 where you might be able to find something comparable for less than $10 though a junk outlet like Oriental Trading Company. I’m looking at a wooden puzzle for $50 in a special needs catalog, where one can go to the dollar store and pick up 3 for $10.
Assistive technology can be sophisticated or it can be simple. I’m the sort that prefers simple although make no mistake that I love the flashy toys as much as any guy! Two years ago, Spaz’s mother had a technology assessment done and they authorized the purchase of a Dynamo for about $3,000 or so. Most of it was paid through Medicaid, so you and I footed a lot of the bill. Within a year, the thing was unusable for a couple of reasons. One was the fact that Spaz is simply hard on stuff. He has to mouth and bite everything and squeeze it and occasional hit it. This isn’t good for electronics, generally speaking. The other reason is because they bought the Dynamo at the end of its support cycle. Every 3 years, Dynavox comes out with newer, flashier and more expensive gadgets and then quite supporting the old ones. So when the Dynamo broke or the memory cards quit working, dynamo said “tough.” They might have supported them for a year, but they eventually quit. This, despite the fact that Spaz’s mother did purchase the extended warranty for another $1,000 or so.
Meanwhile there is Taz, who absolutely is not any easier on his stuff, comes along. Instead of a dynamo, he has a PECS book made of a 3 ring notebook bought at Wal-Mart, with various laminated pictures and pages with Velcro in it and he has had it since middle school and he still uses it despite the fact it is falling to pieces. But when this book eventually visits the landfill, I’m not out gobs of $$$.
It’s so easy to be seduced by vendors peddling assistive devices and technology. They do so many seemingly wonderful things and it’s easy to be sucked into believing that a child absolutely must have a certain thing. Parents of neurotypical children have the same problem, but with the miracle of mass production and mass advertising and competition (the free market) they don’t get pinched nearly as bad. Individuals with disabilities are a seemingly captive audience and it seems like this population is very susceptible to various scams and slicksters. The folks at Dynavox are not necessarily scammers, but they are hustlers. There are populations where their devices are very appropriate and useful. I once had a student with a traumatic brain injury who used one, and they did offer extensive training to all of us educators who worked with him. However, when that went bad, they no longer offered support for it. The turn-around on offering support is about 3 years, which is not untypical in the consumer electronics industry. However, this particular machine cost over $7,000 without the extended warranty. I do have problems with a company who handholds a person through the purchasing process but then leaves them seemingly high and dry 3 years later. And these machines don’t seem to be especially durable as I have never seen one that was used regularly that lasted the full 3 years.
Parents, teachers and service providers have limited budgets and it is important to make those resources we have go as far as possible. I’ve met teachers who basically blow their funds and say, “Oh well, it’s not MY money!” I think that is a glib and irresponsible attitude. Some thinking needs to be involved in what we spend money on as to how important a thing is and how we’re going to use it. As an educator, I’m also mindful of if and how I can transfer a thing home. For instance, I just had a workshop on Intellitools, which is a wonderful bit of software I’m going to use to get my students through their alternate assessments. The cost for this suite of programs is around $285. The cost of the Intellikeys keyboard which makes this software accessible for my kids is $375. The cost of Boardmaker which we use for all sorts of activities (like Taz’s PECS book) and other programs runs about $370. See a trend here? And each of these pieces of software have other supporting bits of software going for $50-$150 each.
Last year, I was given $125 by our department and another $100 from Governor Sonny Perdue. That’s it. And I can’t save my money in a piggy bank, I have to spend it all during a specific time or it is forfeited. In the case of Sonny’s money, I could only spend it during the 3 day tax holiday.
So I can and do appeal to the county office for these big ticket items. Personally, I want a digital camera that won’t be taken away for some other pet project. I can make my own overlays with my own pictures that are actually relevant to what students do everyday. But I’m also going to need the Intellitools to get through the alternate assessment with some degree of sanity.
But back to parents for a second; parents of students with disabilities are usually not wealthy. Especially those on the more severe end of the disability spectrum. The parents of my students are lucky if they have a computer at all, let alone DSL or high capacity processors and memory and multimedia add-ons. I know of 2 of them who have computers, while the other 3 do not. There are not going to be able to afford a touch screen much less Intellikeys and all the stuff that goes with it. They have more important needs like housing, clothes, medical bills and food. I don’t send long lists home to parents of my kids of stuff I expect them to provide. At the beginning of every semester, Thomas and Percy both bring home lists of supplies that their teachers want parents to send in. Wipes, napkins, tissues, sanitizer, air fresheners, paper towels and on and on. In addition we get asked to bring in snacks. In addition, we get hit up to buy wrapping paper, candy, magazines, school pictures, annuals, spirit shirts and clothes and participate in every PTA activity. Raising children is a costly venture, but more so those with special needs. I’m not a big fan of the GFCF diet, but I at least admire the resourcefulness and dedication of those who are.
All of the above is simply my way of saying that I’m looking for ways to bring technology to those who can’t afford the bleeding edge stuff. If I can find a way to make Power Point (or better, Open Office’s Impress) work, I’m going to do it. If I can find a way to give parents access to the internet on the cheap, I’m going to do it. That is part of the driving force behind my Linux/open source blog. I’ve been able to save a buck or two by having access to eBay and an open market place. I’ve been able to find lots of information and learn from other people by virtue of having such access. You all reading this probably takes this sort of access for granted. But within the realm of students with disabilities it seems that those are the people who could probably most benefit from technology and those are the people least likely to be able to afford it.
OMG – I just realized…I’m coming up on my Blogiversary! I’ll see if I can get in some sort of self-indulgent sentimental post in on the weekend. Thanks to all you who have been reading!