The Political Economy of Autism Education

by Henry on November 16, 2010

“Laura at 11D”:http://www.apt11d.com/2010/11/iep-meetings.html

bq. Our next IEP is a big one. Every four years, a child must be tested in a variety of ways. We met back in August to discuss which tests would need to be done on Ian. He was tested for speech, IQ, educational levels, and audio-processing. He went through his first battery of tests back when he was four, so it will interesting to see how far he’s progressed. So, why is an IEP a game of chess? Because I want Ian to receive more therapy and the school district wants him to have less. … Every school district assigns a case worker to supervise your child. Their stated mission is to represent the interests of the child. However, the real mission of the case worker is to limit the amount of money that a school district spends on the child.

bq. He needed to be in a specialized school that had experienced teachers and ABA specialists. Instead, he went to a half-day program in our school with a general special ed teacher, who had no idea of how to work with him. The school district wanted to keep him there, because it was cheaper than sending him to a full day program in another district. They knew that he needed extra help. They discouraged me from going to a neurologist, who would have given us that very important diagnosis. When I was in distress about his education, they told me to stop worrying and get a manicure.

bq. We have a superintendent who gets up in public forums and announces that we are one autistic child away from blowing the budget. Town council members have said in public sessions that we can’t build any more houses in our town, because a family might move in with an autistic child and it will cost us $100,000. During our recent town budget crisis, another case manager in our town said that our expenses are so high, because we pay our therapists too much money. There is a witch-hunt atmosphere around special ed students.

bq. … So, I will enter a conference room in the next few weeks with a carefully arranged speech and specific demands. If Ian needs five hours of after school therapy, I’ll ask for ten. Maybe we’ll get three hours, if we’re lucky.

{ 26 comments }

1

Pete 11.16.10 at 5:37 pm

“we can’t build any more houses in our town, because a family might move in with an autistic child and it will cost us $100,000”

.. wow, that’s vicious.

2

Omega Centauri 11.16.10 at 5:41 pm

Interesting (but not in amusing sort of way). My experience was the opposite. The school wanted to find excuses for more sepcial ed, presumably in oder to maximize funding. My younger boy (now in college) was kept in mixed track much longer than needed even after making the honour role, and we think that is why he is attending a middle range university rather than a top-notch one like his twin. But, it could be that the funding system has changed, and now saving on overall spending, rather than tapping into special ed funds is the priority.

3

John Quiggin 11.16.10 at 7:03 pm

Local school funding seems to be at the root of many of the problems of the US school system. State/national funding might not be a panacea, but it would be a big improvement, I think.

4

mpowell 11.16.10 at 8:17 pm

National funding would eliminate the local battles on this issue between parent and school, but it would just push the argument to the national level. Special needs kids are not a small item in the education budget and their parents are a small minority. I would expect that to be a line item Republican congressman would go after and Democrats would cut as part of bipartisan compromise. I’m not sure funding levels would improve, but it might make the lives of special needs kids’ parents less stressful- you get what you get and fighting doesn’t make a difference.

5

Ingrid 11.16.10 at 8:27 pm

the title of Henry’s post should have been: The Political Economy of Autism Education in the USA. (or perhaps in a US particular state?).

Because it need not be this way. Here’s what I know from the Netherlands. Our autistic son (who soon turns 5) gets 4 days a week of therapy in a school-like setting (offiically it is called a ‘medical daycare center’, but it has an in-house special needs school and serves children up to the age of 7). He is picked up at our house by a non-for-profit (very nice) little bus, goes to school from 9-15, then is brought home again; and the only thing we pay is about 30 Euro’s a month for his lunches and fruit. That’s all. On Wednesdays he is at home. The care is done by specialist orthopedagogical therapists, and they are great.
Of these 4 times 6 hours (24 hours) he has 8 hours of genuine ‘education’ (that is, the pre-maths and pre-writing and pencil-grip development etc. with specialist teachers in a class room of 8 children ); it would have been ideal if that would have been up to 12 hours, but there are too many children on the waiting list.

To the best of my knowledge, all this is funded at the national level.

All this said, with our new government, I am not sure how long this situation will remain as generous and universally provided like this, since there is a general perception that there are “too many” children in special needs education (you know the stories, the children shouldn’t be there, perhaps they don’t really have autism but it may be caused by hyperparenting, you name it…)

6

Kenny Easwaran 11.16.10 at 8:35 pm

Why worry about people moving in? Shouldn’t they be worried about all those newlyweds and others already living in the district that might choose to have an autistic kid just to steal $100,000 from the district?

7

Substance McGravitas 11.16.10 at 8:39 pm

Where I am the school board is obliged by law to accommodate my kid, but the formula for that is such that autistic kids bring a half-day of funding (of a school aide) to the school. My daughter needs and gets a full day of attention, so I am lucky in a number of ways, but my school is required to juggle schedules in an absurd way to accommodate both the kids and their budget, and my kid steals resources – not that I’m giving them back of course because I fought for them – from other kids who might require the same. Mind you, we could afford billions for the Olympics and that’s what counts.

8

Michael Bérubé 11.16.10 at 9:17 pm

Shouldn’t they be worried about all those newlyweds and others already living in the district that might choose to have an autistic kid just to steal $100,000 from the district?

No, because that’s what redistricting is for! Also, kids with autism cost more if they come from far away, and double that if they come from Mexico.

9

Jeff R. 11.16.10 at 9:22 pm

Seriously, it’s because a couple already in the community can be peer-pressured and happy-talked into never getting a proper diagnosis of their autistic kid, whereas the new couple might already know what’s up with their kid and even if not won’t be fully assimiliated into the collective for a while.

10

bianca steele 11.16.10 at 9:48 pm

It sounds like the child advocates are advocating for the school system instead. Maybe they should hire a separate group of people to represent the administration’s interests.

(Right now I’m in the midst of the great preschool search. I’m not looking at the public preschool in my town for a few reasons (for one, there are kids in this town who need the slots more than we do), and I assume a suburban school district will be very different from the urban district I attended, but I can’t say I’m looking forward to dealing with the public schools even if my daughter doesn’t have special issues to deal with, which I hope will be the case. I’m sure the public-school teachers will be great, but it’s an absurd bureaucracy. And I don’t remember whether my brother qualified for an IEP, but he was in special art classes two years after drs told my parents he would never be able to manage a pen adequately, and ended up going to art school (thanks in part to Japanese comics).)

11

Salient 11.16.10 at 9:49 pm

Why worry about people moving in? Shouldn’t they be worried about all those newlyweds and others already living in the district that might choose to have an autistic kid just to steal $100,000 from the district?

You say this like people don’t acrimoniously complain about the so-and-so who had one autistic kid and then had the audacity to get pregnant again. Some of the most chilling conversations I’ve ever overheard in a Panera were exactly that.

12

laura 11.16.10 at 10:50 pm

(Thanks, Henry, for the link.)

Wow. Deeply jealous of the services that you’re receiving, Ingrid. When my son was your son’s age, he received only 1-1/2 hours of services a day and they weren’t appropriate for kids with autism. Actually, I live in one of my generous states in the country for special education services. People move to my area to receive these services. That may be why the local districts are getting cranky. However, if we’ve had problems in our area, the rest of the country must be in even worse straights.

13

Matt 11.17.10 at 12:24 am

To the best of my knowledge, all this is funded at the national level.

It’s worth keeping in mind, though, that New Jersey itself has about half the population (and area) of the Netherlands, so funding at the national level would really mean a different sort of thing in the US as to the Netherlands. Now, this doesn’t justify the often pretty pathological super-local funding for schools one finds in the US, but it does seem pretty plausible to me that there would be some serious problems if most decisions, maybe including funding decisions, for eduction were done at the national level in the US, given it’s very large size and population. (Even Australia, which is, of course, large, has less than 1/10 of the US’s population, so again, doing things “nationally” there is in many ways importantly different from doing that way in the US, and it certainly shouldn’t be assumed to be equally an answer.)

14

Red 11.17.10 at 12:38 am

Oh boy, this one hits close to home. I am the single dad of two kids with autism, one of whom has the most severe form possible, or let’s say, imaginable: no language, no reading or writing, no self help skills, plus seizures and a host of other medical problems—you get the picture. When I get started on this subject, chances are that I’ll veer into a rant, but I’ll try and control myself. Just a few points, one specific to special education funding in the US, the other more general, on the state of the union, so to speak:
1. Dealing with the school district can be a daily battle, in which you need expert help, from parent support groups, professional advocates, lawyers. Arrangements and practice differ greatly from state to state, but generally speaking, the school district may be able to draw on state funds through Medicaid, which may alleviate some of the local costs. Even so, you often need to threaten a lawsuit (which you will surely win, provided you get the help I mentioned). Once you have won those battles, the special education that the child will receive can be very good. There are wonderful people here in the US to work with these children, in enormously challenging circumstances. I salute them daily.
2. On to the larger point: Funny how you never hear from the “family values crowd” when it comes to these issues, even though they have the potential of destroying the entire family. The costs are so huge that evidently the best system is one that spreads the costs over the largest number of people, i.e. at the federal level. You would have thought that la Palin, with her Down syndrome boy, and others of that ilk would be supportive of public efforts to sustain families with such children. Nothing doing, of course. They will trot out the usual slogans (no socialism, etc.), or, even more insultingly, will tell you that “there’s always charity.” Conservative Catholics are now invoking the idiotic principle of “subsidiarity”, supposedly a respected Catholic tradition but really an intellectually vapid excuse to sell their soul to the Republic party, with overturning of abortion rights as the ultimate price. The recession made all of this far worse. The right has skillfully turned the existential anxiety of many good citizens against the weak, the vulnerable, the needy. I’ve got mine, so screw you.

15

Substance McGravitas 11.17.10 at 12:46 am

I’d note here that a lot of the things done for autistic children are a part of a therapeutic program. Certainly the schools are there to educate and teach and that sounds like part of the school board’s budget, but my lovely daughter’s school aides come out of that budget too when more properly it should come out of a medical budget of some sort, and ideally from the team of people who help her daily anyway.

16

Substance McGravitas 11.17.10 at 12:47 am

the school district may be able to draw on state funds through Medicaid

Nice.

17

Red 11.17.10 at 12:53 am

“Ultimate price” should be “ultimate prize.” But at what price your soul? etc.

18

L2P 11.17.10 at 1:05 am

That sucks. I think for LAUSD the entire special education budget is less than 2% of the total. They probably blow more on self-esteem seminars.

That budget bait and switch is brutally effective, though. Unfortunately, schools are the only public service most middle class people really see. I get the feeling a lot of parents feel like their precious snowflakes deserve just as much attention as anybody else’s and get all sorts of frustrated when those schools (that their taxes PAY FOR by the way ya know) give any sort of special treatment to anyone else that there kids don’t get. It doesn’t help that a lot of schools are asking kids to schlep in paper and cleaning supplies. And then somebody’s kid gets $100k in special training and stuff when a third of the kids can’t read at grade level? That focuses a lot of attention away from admin costs.

19

Emma in Sydney 11.17.10 at 8:13 am

Even Australia, which is, of course, large, has less than 1/10 of the US’s population
Education is a state responsibility in Australia, although much of the funding comes orginally from the federal government. This means we have some damn big education systems. I believe the New South Wales education system (in Australia) is one of the biggest in the world, funded by state and federal government, and I have not heard of that kind of rationing. Over 750,000 students are enrolled in government schools and over 20,000 are in special ed schools. My friend’s severely physically and mentally disabled son is picked up from home, taken to a high-needs special school and brought home for basically nothing — paid for by taxpayers. My daughter’s high school had over 2 million dollars worth of acessibility renovations because one child in a wheelchair was about to arrive — and of course has since become a school of choice for families with physically disabled kids. This is as it should be. NSW has a population of about 7 million and an area of 809,444 km2, and every disabled child is entitled to full schooling no matter where they live. I’m sure it’s not perfect, but at least it is better than local districts fighting among themselves.

20

Doug 11.17.10 at 9:48 am

Further to Matt at 13, iirc more than 90% of education funding in the US comes from either the state or local level, so addressing things at the federal level would be most useful for either standardizing definitions or opening new streams of funds. One of the really pernicious things is what Laura touches on, i.e., differences in the wealth of local districts that lead to differences in the quality of schooling. Doing something about this might go furthest to improving equity within states. (You’d still have Mississippi vs Massachusetts, but barring far-reaching changes to fiscal federalism, that’s going to be the case in the US.)

Another thing that Laura has written about in other posts is the absurdly high pay of school administrators in some districts in her state: things like people being “superintendent” of three schools and drawing $200,000 in salary. That’d be a nice Harper Valley PTA way to shoot back at “blowing up the budget” comments, but you’d probably want the person to say that to be someone who won’t wind up as a supplicant to the school system.

21

Harry 11.17.10 at 5:00 pm

The incentives vary by state, depending on the state funding formula — some formulas pay more than others for the services, but none (as far as I know) cover the full real cost. But states that are signed on to IDEA have to show that they are in compliance, and that creates a counter-incentive at the state level to the one Laura is citing. It is also the case that in some districts high quality provision is provided, but not broadcast, for the reasons Laura’s mayor cites.

I don’t know the figures on how much is spent, but I’m surprised by L2P’s claim. I do know that an LAUSD study 20 or more years ago demonstrated that almost the entire rise in real spending over the previous two decades in LAUSD was down to increased provision for special ed. The special ed fraction of my school district’s budget is a good deal more than 2%. Not to say that they don’t all waste lots of money on wrongheaded seminars etc.

The fundamental problem about administrators, by the way, is NOT that they are paid too much (my guess is that they are a bit, but probably not when compared with managers of equally large and much less complex organizations). There’s a big pipeline problem — by and large the wrong people become principals and then superintendents, and to get promotion you have to play the games and conform with the culture of the organization, which is a culture largely inimical to high quality instruction (special or not). There are fantastic exceptions (it would be invidious to name people, but Boston has had a pretty good run of superintendents recently).

22

Laurel 11.17.10 at 5:40 pm

The fundamental problem about administrators, by the way, is NOT that they are paid too much (my guess is that they are a bit, but probably not when compared with managers of equally large and much less complex organizations). There’s a big pipeline problem—by and large the wrong people become principals and then superintendents, and to get promotion you have to play the games and conform with the culture of the organization, which is a culture largely inimical to high quality instruction (special or not). There are fantastic exceptions (it would be invidious to name people, but Boston has had a pretty good run of superintendents recently).

YES. This is a systemic problem, created by the incentives for becoming an administrator and the incentives for administrator education (students get a bump in pay, so they want the cheapest courses possible in both time and money; universities get tuition dollars, so they want to offer the cheapest courses possible in both time and money; most people in the classes won’t ever become principals.)

23

njorl 11.17.10 at 9:22 pm

Your situation sounds somewhat like what I went through with my son. He’s autistic, but he also has trouble with extreme rage, along with some less problematic behvioural issues. We warned them what he was capable of doing, but they thought we were exaggerating to get better placement. They didn’t think a 6 year old could be dangerous. They put him in a “mainstreaming” program, with mildly autistic and other slowly developing non-autistic kids, mixed with mainstream students for some classes. He received no behavioural therapy. He’s an absolute angel 99.9% of the time. During the other 0.1% he put a teacher in the hospital. We got the placment we wanted.

My daughter went the more traditional route. She was progressively misplaced in inadequate programs which came progressively closer to what she needed. She accidentally broke an aide’s nose when she was one step away from where she belonged, and that got her transferred, but she would have made that last transition in a few months anyway.

24

Fielding J. Hurst 11.17.10 at 9:59 pm

Wow. Great superintendent. Not.

25

Chris 11.18.10 at 1:08 pm

Doing something about this might go furthest to improving equity within states.

That’s why it will never happen. Rich people live in rich neighborhoods and don’t want their money going to educate some poor kid that might not even look like a Real American any more than they want their child to go to school with said poor kid. And the rich control American politics, *especially* at the less-publicly-visible state and local levels, so what they want happens.

We have an educational system that perpetuates our class system because *that’s the kind of educational system the upper class wants us to have* and we’re a de facto plutocracy. Crappy education for the children of the poor isn’t some kind of bewildering cosmic accident. It’s working as designed.

26

Anderson 11.18.10 at 2:06 pm

I have an IEP for my Aspergers/autistic/?? 6YO in a couple of weeks, so this is timely.

I actually live in Mississippi not Massachusetts, but our white-flight suburb is fairly affluent (moreso than I am, dat fo sho), and I’ve had a good impression of the local program – my boy’s one of a class of only 3. But this post will have me thinking about being a little pushier about speech therapy for instance. … It really does suck that it’s all about where you live and the property-tax base. No way to run a country.

(When I studied surrealist poetry back in grad school, I didn’t anticipate living it daily. Q. “Do you want an apple or a banana?” A. “Alligators are green!”)

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