How To Find a Way When There Doesn’t Seem to Be Any?
November 10, 2008 by Kristina Chew, PhD
Filed under Health
I don’t know of any family with an autistic child who hasn’t, at some time or other, had some kind of financial difficulty, whether in the form of paying for therapies and treatments, or scrambling to live on one income, if one spouse has to quit his or her job to take care of a child. Living in a time of economic crisis means that families may well have fewer resources but just as many hopes to provide for their children. In yesterday’s Seattle Post-Intelligencer, Paul Nyhan focuses on the Otts, whose 6-year-old son, Aaron, is autistic: The Otts’s income fell from $120,000 to $38,000 last year as the credit freeze and the collapsing housing market took a severe toll on the income of Robert Ott, a “veteran real estate broker.” The family is no longer able to pay for behavior therapy for Aaron, who’s been struggling much more in his first grade classroom.
In one of the stark realities of the credit squeeze, [the Otts] can’t even free up cash by selling their home and downsizing.
“We can’t sell this place to make a profit,” Robert Ott said.
Plus, they probably wouldn’t qualify for a new home loan.
Looking back, he wonders what they could have done differently. Maybe held onto more savings? Skipped unproven therapies?
But like many parents dealing with a special-needs diagnosis, they felt pressure to do as much as they could as quickly as possible.
“We just moved forward doing everything,” Robert Ott said.
Ott notes that there’ll find a way to manage and provide for Aaron “‘because there is no other choice.’” But surely there’s a better way, a way to provide for families and their children: Families in Wisconsin, in Washington (as Nyhan notes), in Virginia, and around the country are hopeful for the passage of legislation requiring insurance coverage for treatment for autistic children.
Not that that will be the end of their efforts—-then there’s the need to get therapists and start teaching…………
I read this article earlier today and was disheartened to read the comments by readers. My heart goes out to the Ott family.
It could happen to any of us—that’s one thing I keep in mind.
I think that a lot of people just have absolutely no clue of the actual cost of raising an autistic child- fortunately I never had to worry about therapy, but when I was a single mom it was the “little things” that killed any hope of staying above water. 3 autistic kids with 3 different food requirements (it never failed that they couldn’t have the same food obsessions at the same time, and they were always for more expensive processed food), replacing mattresses and clothing due to chewing, the many, many extra loads of laundry, replacing furniture due to excessive jumping on it (we burned through mini-trampolines in about a week), extra transportation for things like grocery shopping (God forbid you should actually get all of the shopping done in one trip before someone melted down), locks for fridge, stove, thermostats (it’s amazing how your power bill increases when everyone likes turning the heat up to 100 so that they can hear the beep)- it’s scary. You try to keep it in the perspective of their learning curve, but there were a lot of times where my mantra was “I love my children, I love my children”.
Now that the economy’s taken such a downturn (in Canada as well), I find myself getting more tense every day as we wait to see whether my husband’s job will survive or not. Our costs won’t be the same (I don’t have any clothing or mattress chewers at the moment), but it’s still nerve-wracking.
For five years my son Ben received ABA-type services entirely at public expense under IDEA, as part of his Free Appropriate Public Education (”FAPE”) from his local public schools system, Brookline, Massachusetts (hometown of Sue Senator) – in 1980 to 1985! We stopped only because we found something better for him – Daily Life Therapy at the Boston Higashi School (which was again publicly funded as FAPE for over 6 more years – with an understandable time of transition to a new approach).
Not only hasn’t IDEA been repealed, I understand that it has been greatly improved over the 30 years it has been in effect (although the original law passed during the Republican President Gerald Ford administration was really quite good).
So why are U.S. parents privately paying for ABA-type services? What happened to FAPE?
@Arthur – “So why are U.S. parents privately paying for ABA-type services? What happened to FAPE?”
FAPE is still there, but I think as the need has grown, given the increase in autism diagnosis, the criteria for determining eligibility for ABA has become more narrow. Two of my kids are in SDC programs. My youngest daughter received ABA, Speech and OT through our Early Start program but ABA ceased when she entered the district.
My middle daughter only just started receiving ABA services this fall in her SDC Kindergarten class. Prior to this year, she was in the same preschool program her sister is now in. ABA was offered by our district and was not something we had to fight for, fortunately. I think one of the reasons for that is that we gave the District time to get to know her and we also gave ourselves time to see how she adapted to their program so that when we did need to advocate for something, we had data to back up our requests. Now, could she have benefited from ABA from day one? Of course. Do I feel we have irreparably harmed her by not advocating for ABA from day one? No. Is that the strategy every parent should follow? Of course not. You have to look at your child individually and prioritize what they need.
Sometimes it’s hard but I try to remember that unfortunately we live in a world where districts have to do that too. It’s not an ideal situation. An ideal situation would be for education to be fully funded on ALL levels, regular and special ed. Sadly, it’s not, in fact far from it. And districts are run by people, and people are not perfect. They have budgets to balance as well and superiors looking over their shoulder telling them to keep costs down. And so that can be frustrating as a parent when you’re child DOES need a service and you know you’re going to have to go through a dozen or more hoops to get it. Sometimes it’s just easier to pay for it yourself.
I wish I had an easy answer, but all I can say is
we just need to keep fighting the good fight and petitioning our representatives to put their focus on education funding.
Jen: Ditto here, special groceries kill us, and my extreme chewer goes thru teethers on a daily basis!!!
I’m also surprised when I hear of parents paying for ABA privately. All of my daughter’s therapies have been provide by Early Intervention or the school district. And they didn’t skimp on it either — she gets ABA (5 hours a week with a certified ABA person, but her 1:1 aide runs the program continuously during school), 5 sessions speech, 4 OT, 3 PT, 2 play therapy. The only thing we pay for privately is $50 for hippotherapy once a week.
If we lived somewhere where all this wasn’t provided? I asked my husband about this, and he wouldn’t pay for any of that privately, because it’s not worth going bankrupt over. That’s way too much stress. It’s not that my child isn’t worth it, but it’s a matter of balancing expectations and reality.