I have always wanted to work in long-form nonfiction with a journalistic style. I wanted to do in depth investigations of issues that need more than a soundbite or a pithy Salon essay to understand. One of the things I want to research and write about (as if you haven’t guessed) is the machine that is disability services, including special ed under IDEA, Vocational Rehabilitation under the Voc Rehab Act, DD services under the DD act, nonprofits that support people with disabilities, even crossing into the economics of durable medical equipment and assistive technology. I have seen it as a student, a client, a professional, a caregiver and a family member. If you look at Nik, D, and me combined, we have 120 years of cumulative experience living with disability, dealing with these services, organizations, laws, etc. And although the rest of society looks at these organizations and services and says a collective “Aaah, how wonderful and saintly they are to work with those poor people,” most disabled people who have been able to take a look at what is really going on know that it is a huge racket.
It is an industry that feeds upon itself. Yes, a bit of good does trickle down to the actual so-called beneficiaries to various degrees. But it is largely a total crock of shit.
You have the MDA with its million dollar earning CEO and it’s spokesperson who calls those with MD half-persons who should stay in their houses if they don’t want to be used as objects of pity to raise money.
You have the guide dog schools who work for the donors instead of the clients and basically imprison their students and strip their rights in regards to their dogs.
You have the assistive technology companies that are fighting tooth and nail to try to stop mainstream companies from incorporating tech to make their products accessible because they want to charge thousand percent markups for it…and can get that kind of money through the VR organizations who get intertwines in conflict of interest vending partnerships. Then they provide no direct customer support for their products like every other mainstream company does. Instead they have VR and schools pay $100′s an hour for technical consultants. Because they can.
You have the insurance companies that will not buy a quadriplegic a $5000 bed, but instead will pay $500 a month to rent it, plus the administrative costs of making the quad go through hoops to requalify every six months for decades. D has a bed that is no more special than a craftmatic adjustable bed that Medicare has now paid upwards of $90,000 for because they have rented it for 15 years instead of bought it for him. If his pressure sores heal, he has to fight to keep it. If they take it away even for a few weeks, he gets more pressure sores and then they have to pay $100s of thousands of dollars for the follow-up care for that.
You have the VR counselors that provide no counseling, direct rehab services, or much in the way of information, but make upwards of $70,000 a year when all they do is sign papers that fund things. But not until they have used their godlike powers to determine that you are “motivated” by rearranging your whole schedule and meeting with them every step of the way when most of their role is clerical and could be done over the phone and email.
You have Orientation and Mobility Instructors that have less than 480 hours of real travel instruction (about 3 months worth of 8 hour days.) Which is kind of the equivalent of having a piano teacher that only knows how to play chopsticks and maybe “Mary Had a Little Lamb.”
Same for Braille and specialist of the Vision Impaired in the school systems. Yes, they know more than your average person walking down the street, but they are severely lacking in actual skills and knowledge about disability adaptations and issues. Most teachers of the vision impaired in the schools have the Braille reading ability of a kindergartener. But they are the EXPERT! So don’t think they don’t want to teach your kid Braille because reading two print letters on a CCTV that are 12 inches high is really what literacy is all about! No, it is because they don’t like to teach it because they don’t know it. Boom! Illiterate blind adults, and statistics in graduate studies books that say blind adults have a high rate of illiteracy, which causes low expectations for teachers, which causes low accountability, and the cycle continues.
There may always be some need for professionals that specialize in specific disability training techniques. Qualified teachers of O&M, Braille, ASL, augmentative communication, occupational and physical therapies, personal care attendants, etc. The direct-service “problem solvers” and adaptation specialists for certain low-incidence populations will always have a niche. But the truth is, if the world ever becomes equitable for people with disabilities, the industry will cease to exist. If health care were equitable, if universal design became standard, if employment discrimination were eliminated, if poverty were no longer an issue for people with disabilities, if we were truly integrated, the industry as we know it would collapse.
It is a bit of a disincentive, isn’t it? To work towards that kind of world? Who is going to call you a saint for working with the blind or the developmentally disabled if they are just considered normal everyday people who are respected in society? Who is going to make those workers with helper complexes feel like they are helping? Who is going to make the donors feel good about donating without showing pitiful disabled people who can’t survive without a dog or a cure? It is why the behemoth works for itself first, and the disabled person is the afterthought. It is a multimillion dollar industry across industries.
Right wingnuts always worry about the disabled client sucking the teat of government…but in reality it is the industry itself which funds itself. Both private, public and nonprofit sectors work together to feed the system. And the way they do it is by making sure the beneficiary has very little power. Keep ‘em needy and they will need us more.
Lest I sound like a crazy libertarian. I do strongly support training and adaptive assistance for people with disabilities. However, I think if these services were lead by and for people with disabilities, you would get most (not all) of the disincentives to do good work to disappear. Every time a blind person succeeds, it helps all blind people. Every time blind person fails, it reflects poorly on all blind people. It shouldn’t be that way, but right now it is. It is self-serving, for disabled leaders to make sure there are successful people out there, but it is a win/win at least. And the fact that disabled people actually treat each other as equals generally, which is the first step to success, knowing you are equal.
Which brings me to my lovely story for today. It isn’t even about blindness. It is about Early Childhood Special Education. A program that I reluctantly put my son in when he was 18 months old. Avery showed signs of developmental delay, possible autism, and most significantly, a language delay when we first approached early intervention services. I called my local Educational Service District and referred him myself. Although I called multiple times, I did not receive a call back for about 4 months. Finally, I called upon a sort of distant aquantance who worked in Deaf services in the ESD for help. With her pushing, I got an appointment for assessment the very next week. (What if I didn’t have that connection?)
I was used to EI services. I was prepared for a few weeks of all kinds of assessments. Vision, Hearing, Speech, OT, PT, Psych, etc. Then I thought these folks would be members of Avery’s multidisciplinary team and we would discuss goals and objectives for his IFSP and services would be planned out. Instead, his assessment was an hour and a half meeting with Nik and myself, a teacher and a speech pathologist. We answered a lot of questions, they watched Avery for a bit, then we were sent off. There was no multidisciplinary meeting, they wrote the IFSP themselves based on boilerplate documents and sent them to us to sign with no discussion. (I guess my special ed methods of the 90s were kicking it old school?)
The goals and objectives were bullshit generalities, but whatever. Since they had done no hearing, vision, autism eval…I ended up doing all that on my own through the pediatrician and self-referrals after the fact. I offered these results to EI, but other than asking about his vision and hearing (which was fine) they were not interested. They said he had multiple developmental delays across the board (motor, social, language, and cognitive) but only gave him 6 hours of speech path for the year. That is literally 6 clock hours for a whole year. Yes. I was shocked. I started Avery in private speech pathology, that I had to pay a portion of myself. Furthermore, there was some political backlash about putting him in private. To get my insurance company to pay for it, I had to have EI say that he needed more services than they could provide. They did not want to say that, because if they did, they would lose their medicaid payments for him, medicaid payments would go to the private SP. Obviously this was a point of contention. I eventually got what I wanted.
So, he did get his six visits, in which his speech pathologist worked with him very little. Instead, she filled out her paperwork, asking me questions. She visited his mainstream preschool a few times, and they said she did the same there. She suggested that the preschool provide language pictures for Avery and she said she would provide them. She never did, so I made them myself. (Again, what about the parents who may not know what a picture exchange system is or have the resources/time to make one?)
When he turned three, he changed “teams” from EI to ECSE. This is when he started ECSE preschool. We had also changed insurance, and my new insurance did not pay anything for Avery’s private speech pathology. I was excited about ECSE preschool, because I found private Speech Path to be kind of regimented and intense. He did better some days than others, but some days it was a complete wash because he just was not going to cooperate. For me, the 4 hours a week he would spend in ECSE would be like less intense speech pathology. It would be more fun and engaging and gentle and he would have peers and teachers who could work right at his level. I had worked in ECSE before in both Nebraska and Kansas, and it was one of my favorite settings as a teacher. (Although again, kicking it old school, we had kids in 20 hours a week, not four. And they had therapists that came in weekly and worked with them one on one as well.)
I went with him the first day, and although they were NOT happy that I came and were very uninviting to me, they were kind to him and it was an ok atmosphere. I was happy that they got right in his face to communicate. I was happy that they already had picture exchange systems and were signers. I was happy that there were three adults in a room of nine kids. I wasn’t happy that the room was tiny and they didn’t have windows, but it was nice enough for four hours a week so I found it to be a good placement for him.
So, my main need with Avery is that he really needs a lot of one on one attention. You need to communicate with him by getting right down on the floor and in his face. Communication takes extra time because he just doesn’t have the vocabulary. He has some weird quirks that you have to deal with. If communication does not go well or his routine is changed, he can be a behavior challenge. I have worked with Avery and his speech A LOT. But I am just one person, with a hearing loss no less. I also have two other kids and a job and my own health needs and responsibilities. I am busy. I wanted Avery to have as much opportunity to be stimulated and pushed at his level to go further. For some kids, speech comes naturally. It doesn’t for Avery. You have to be deliberate. It is hard to be deliberate 24 hours a day. So, Avery is in either Goddard or ECSE 4 days a week for a total of about 12-15 hours total. This is an immense help to me, and is what Avery needs in order to keep moving forward. I was very happy with the situation.
The only thing I found quite odd was that after the first day, I put him on the school bus to go to ECSE, and never heard another thing again from anyone for 4 months. Not a note, not a call, not a conference, nothing. They required that I buy a notebook for his backpack to pass notes. (I remember working in ECSe and daily filling out the kids’ notebooks). Avery’s notebook is still totally blank and hasn’t been touched. I looked in his backpack daily, and except for an art project or two, absolutely no information about what was going on at that school. No communication whatsoever. This is a nonverbal kid. This is a kid who needs consistency across settings. And nothing. How do they work with parents and have them generalize what they are doing to the home setting if they do not communicate at all? (Again, what if I didn’t already know a lot of communication strategies for speech delayed kids?)
It got so bad that Nik and I had this running joke. We would go, “Avery! How was school today? Did you participate in any new Satanic rituals?” “Avery! Did ECSE have you hustling on the streets today?” “What did you do at school today, Avery? Did you learn how to light up your bong?” It was like, we put this 3 year-old who doesn’t talk on the bus, and two and a half hours later he comes back and we have nothing to go on in-between. I would have visited sooner, but I had D’s situation to deal with and so didn’t have childcare for the older kids.
Finally, I gave up on D coming home, and decided I just needed to go there myself. I made arrangements for Aaron, but took Naim with me. I emailed the teacher a couple of days before and told her that I would be visiting. (Well, I asked, but I asked in a way that I was not really terribly concerned about her answer.) The morning of, she emailed me and said it was just so busy that morning with all 9 kids in a small room. And if I was going to come I needed to fill out their volunteer packet. To visit my own kid. So, yes, I have to apply. To visit my own kid.
I chose to “not see” that email and merrily went on my way down to the school. It is always a bad sign when you are not welcome to just drop in on your child’s school setting. Village Home practically begs you to be involved in the kids classes. Goddard School is extremely open and welcoming about visitors. This was just so uptight in comparison.
Speaking of Village Home and Goddard, I also visited those settings the same week. Naim had asked me to be in a video in his filmmaking class, and Aaron had a bottle rocket launch that I was invited to. Both times I had Avery, and both times Avery and I were completely welcome in the activities. At Goddard, I was pleased to see that Avery had more opportunities to make choices than I expected and was doing very well there.
So, I go to visit ECSE, and I had asked her to please look out for me when they bring the kids from the bus through the lobby to go to their classrooms. (They do not allow parents to just walk back to the room to pick up or drop off kids. You have to wait in the lobby. Usually Avery takes the bus, but this day, I brought him.) I was concerned that I wouldn’t see/hear her and would miss her. On Avery’s very first day, we waited in the lobby and we were left there. The lobby cleared out and Avery and I were alone, so I had to wander around and get someone to show me where to go. So I didn’t want that to happen again.
It happened again. But see, this was what was disturbing about that. Avery had gone there four months by this time. This is not a large school. I waited in a prominent place with Avery right in front of me. I figured maybe they would miss me, but they wouldn’t miss Avery because they know him and he knows them. All the classes and the teachers walked by and not one teacher or aid recognized Avery nor he them. I don’t know. It was a bit weird. At Goddard, people I don’t even know are all “Hi, Avery!” when I walk in. He isn’t even IN any classes at VH and I don’t spend much time there anymore, and people say Hi to him, and it isn’t like he says hi back or anything. The other things that was amusing is that Naim was absolutely appalled by the place. The building is nice, it is a bit windowless where the classrooms are (several conference rooms have all the windows) but it is fine. Naim was all, “Are the teachers mad?” “Do they not want you to be here?” “Are the teachers the boss of you?” “Is this what public school is like?” “Avery’s other teachers are nicer.”
So, having just come from Goddard a few days before, I was surprised to see that Avery had not progressed much in this setting from four months ago. Part of it was that when I am there, he is all into me and follows what is going on less, but that happens at Goddard as well. But it was more like, they were not pushing him as far as he can go. They were not giving him many communication opportunities, and when they did, they would accept yea or grunts for answers when he can do more. They were kind and gentle and seem to care about the kids. They had a nice little routine that I could tell Avery liked. I was ok with him being there, if it was all a bit tense and uptight, but I thought that they did not realize what he was capable of or push him hard enough to move forward. I found that his first EI teacher (the paperwork teacher) grossly underestimated his abilities. And I thought that was what was happening here, too.
So, I wrote an email that had three main points. First, that I would like more communication from them in some form. Second, that although I want to respect her space and not be intrusive, I would be coming to visit from time to time and I didn’t find it necessary to fill out any volunteer paperwork. (It isn’t like they don’t already HAVE all my information.) I said I would be fine signing in for security reasons, but I don’t think it would be necessary to apply for volunteer positions to visit my own child. Third, I explained the differences I saw between his home and Goddard performance and ECSE. I basically asked if we could meet and talk about this so they could better understand where he is at and basically “step it up.”
So, you all know I have a tact problem sometimes, right? Well, Nik is my tact moderator. I have him proof things for biting comments. He said I was being almost too nice. And I really did try to be nice. I was all about how I understood that they have so many kids that it can be hard to get to know every kid when you only have them a few hours a week. I was all about how we were a team and they were the experts on SP and early childhood but I could provide insight on my own kid since I know him so well, etc. I disclaimed that I know that in one day I cannot see everything that they do and I know that just by my being there, I change the norm. Rah! Rah! Nice, nice, but communicate with me, dammit.
A week goes by and I hear nothing. Then she says that she is going to observe Goddard and set up a meeting with me. Great! I think. That is a very appropriate response.
So the meeting was today. And it was quite awful and ugly. I actually like his teacher, who I will just call Jane. I do think she tries to do a good job, is kind, cares about the kids and is competent. To me, this was just an adjustment that needed to happen in expectations. A relatively minor realignment to make sure we are all on the same page. During the meeting, Avery stayed at Goddard, but I had Aaron and Naim with me. So the very first exchange was when a speech path I had never met before came in and gestured to the kids and said, “Don’t they have school?” And Jane stage whispered, “Homeschooled!” Then there was a few beats of dead silence. I just laughed about that one.
So Jane launched into how this was the six month review, which no one ever told me that there was going to be a six month review, so I wondered if there would have been one if I hadn’t had come in and emailed. Nothing was said about the communication or visitation issue, so I let it drop. She went over his progress, domain by domain, including what the Goddard teachers had contributed. It was a little bit of an underestimation of his abilities. Some of the things they took credit for, he had been doing for months with me at home. I let these things go. In general, they were not way off, but a little off. Given that they don’t see him as much as I do, it is to be expected. Not a big deal to me. So I felt it was my job to report what I am seeing him do at home and where I think he can go from here, thinking that this can give them an adjusted idea of how much they can expect from him and they can raise their standards a bit.
Jane was fine, but the speech path I had never met or heard of before, who I will call Joan, seemed to want to challenge my assessment a bit. At one point, Jane had covered the info on expressive communication. But Joan wasn’t done yet and wanted to give me more info. Great! She is the speech path. She proceeded to read to me verbatim a transcript of a conversation that she had had with Avery, where he was less than communicative and gave her a lot of grunts and yeahs, and not much in terms of words. I have no doubt it went down just that way. OK. Fine. But she seemed to want to demonstrate how limited he was in his communication. I asked her how often she worked with him, and I basically got that she doesn’t at all. She just came in to do this assessment before this meeting. I didn’t challenge her on her assessment. I have never denied he has a significant language delay, but I was kind of wondering what she was trying to prove other than she new more than I did about my own kid. Or that I shouldn’t think he was doing so well? I don’t know.
But I am happy. I am all about the team and what’s best for Avery. Until they blindsides me with this:
Avery does so much better at Goddard that we think we should change him to a consultant model in the community setting.
OK, let me translate that for you:
“We don’t like that you are meddling in our program and giving us your opinion in our area of expertise. So we are retaliating by kicking your kid out so we don’t have to deal with you anymore. Since we can’t legally kick your kid out, we are going to all but eliminate his services all together under the guise of “consulting” with the teachers at Goddard, in which we will come to Goddard once every two months or less and give the teachers a few pointers while we sit and do our paperwork and then leave.”
Consultative services are next to no services at all. My kid has a developmental disability and we just spent 20 minutes describing all of his delays, but he is doing better at a program with 2 teachers with associates degrees and 20 kids and no special ed services. They don’t see this as a problem with their program in any way. They see it, rather, that Avery is not a good fit for their program.
It is not Avery’s JOB to be a good fit for their program, it is THEIR job to provide an individualized education that fits Avery’s needs. He is doing better at Goddard not because they are so great, but because ECSE is so lame. But rather than stepping it UP and matching him where he is at which is mandated by THE LAW, they would rather not deal with any accountability and just pitch him to the curb.
I actually had this exchange (paraphrased to the best of my ability):
Me: Well, my concern is that if he loses ECSE, he does not gain Goddard. He isn’t exchanging a setting, he is losing one. So Goddard is irrelevant, really. This is not a setting choice between ECSE and Goddard, it is a setting choice between ECSE and nothing. Do you really think that no setting is better than ECSE?
Me: So basically, you are saying that your program is actually detrimental for him?
Joan: No, just that he is more motivated by his peers.
Me: But that doesn’t make sense to me. First of all, because you just got done telling me that he does not interact with his peers much and engage or initiate with them much and that is something he needs to work on. Second, Avery’s peers are actually more of a match in ECSE than Goddard.
Joan: He seems to be more challenged at Goddard. (And then I asked about peer model program, and they said they don’t have one, but it says they do on their website….so….)
Me: Well, again, he would not be exchanging ECSE for Goddard, he would be exchanging ECSE for no services at all. What would you do if there was no Goddard? Because I am not required to provide Goddard to somehow substitute special ed services that you are unwilling or unable to provide. He would be replacing ECSE with sitting alone in my house or when I work with some interaction with me while I am doing 20 other things. Or spending the day with him and getting exhausted by burn out. I may be a former teacher, but I am not a speech pathologist nor an early childhood specialist. And he would not be getting any of the very services he needs. It seems to me if he needs more challenge, then ECSE should challenge him more. It isn’t like I am asking you to change your program in any way for him, I am just asking that when you communicate with him, you use and expect more vocabulary, more choices, more standards. That is more of a change in mindset.
Jane: We can’t do that. And this is about what is the best setting for Avery.
Me: Well, setting is only one aspect of what is best for Avery. What he needs is clock hours of stimulation, active engagement, and communication opportunities from people who can understand and work with him at his level. He needs as many of his waking hours in as many of his days as possible to be filled with learning opportunties to ameliorate his delays. You are reducing his clock hours of therapy to next to nothing rather than make minor adjustments to how you work with him, which is the entire objective of special ed and having IEPs.
Them: something something that I don’t recall about stupid shit that was illogical and condescending about how I could take him to fucking library storytimes or something instead.
Me: Well, are you telling me I don’t have a choice?
Jane: We have to decide what is best for him as a team.
Me: Well, I am not going to sign off on this today.
At this point, Joan left the room with no explanation. Jane and I talked a bit less contentiously and maybe small talked with the kids. When Joan came back, I nearly cracked up at the absurdity of what she said next.
Joan: (deep breath….long sigh). I just had to take a bit of a mental break and just take a bit of a walk. I just wanted to see if I could come up with any ideas.
Me: (in my head) Translation: You ran to your supervisor and asked her what to do about the bitch parent you are dealing with. What did she direct you to do?
Joan: And my idea is that we don’t have to decide this today. Avery will change a lot in the next few months so maybe we could revisit this in the fall.
Me: Okay, that sounds fine, but his annual review will be done in November, so we could just wait until then. (In my head: You are going to either hope Avery has a language explosion in the next few months and no longer qualifies or you are giving yourself time to get reinforcements to build your case. You have also given me more time to get reinforcements to build my case. Fine.)
Them: Agreed, agreed. Nice platitudes about how great it is that I am so involved in my kids’ educations and that I “CARE”. Talk about the weather, grilling my kids a bit to see if they are normal or weird homeschoolers, Bye, Bye.
And then I walked outside and Naim says, “Those teachers were really running away from you and trying to change the subject. I think they had a secret that they thought they could trick you with but then they were surprised you figured it out.”
Bwah ha ha ha ha! I love that kid.
So, I got a reprieve, but god that was ridiculous. The combativeness between special ed teachers and parents is worse than that of blind self-advocates and the OCB. I so felt like walking out and just being like, FUCK THIS. This is exactly why I homeschool. I am going to have to do all of Avery’s so-called special services myself like I have mostly done all along. I thought I finally had at least 4 hours a week of help with Avery and god forbid I give some feedback to try to make it more productive and successful and that is JUST TOO SCARY for them.
It is like it is such a game for them where they role play “I am the expert and don’t question me” instead of realizing they are talking to a real-life disabled person with real life needs and contributions. It may be your job, but it is only my life! It is only my 3 year-old’s actual life! But don’t interfere with their program! Don’t try to manipulate the behemoth into actually providing the services it is supposed to provide for the people it is supposed to provide it to. The behemoth is here to benefit those that profit from it. It ingests itself and rolls along, maybe spitting out a service or two as a random by-product if you hit it hard enough for long enough.
I know. I need to write a book.