And your frustration is shared by the professionals too.
I think there are a group of parents who know how to get extra accommodations for their kids and how to continue those accommodations through college. Maybe they have the money to pay for extra testing, but sometimes I found it was the groups they’d joined for one child or they professional contacts of the parents. My daughter was born at less than 2000 grams, so automatically qualified for IDEA services for 0-3 years, and then qualified as a 3 year old because of fine motor skill issues. She got some services but could have had a lot more if I’d been willing to fight for them. That would have taken a lot of time I didn’t have. I found that a lot of people who ran the organizations knew how to pull strings for their kids or their friend’s kids. One actually said to me "There’s nothing wrong with your child.’ Um, she was 18 months old so how would they know? Well, mine wasn’t in a wheel chair, could breathe without assistance, and didn’t look special needs. They had to allot some money to her because she did qualify under IDEA and they didn’t like it because THEIR kids needed it more.
I was absolutely grateful that my daughter didn’t need as many services as theirs, but mine was entitled to some. I got tired of fighting the system and did give up some things she was entitled to because I just couldn’t deal with those people any more.
We had a case where a family sued the school district for the tuition, transportation, supervision for their child to go to a boarding school on the east coast 365 days per year. There wasn’t a question that the child benefited from the private school, (he’d been attending) but that money was a HUGE portion of the Spec Ed budget for the district. The family won and the district had to pay. Those most upset about it were the parents of other SPED kids as their kids then got a lot less - larger class sizes, programs and teachers cut, no new equipment. The district had argued that it could accommodate the child in the district but the parents said the BEST education for the child was at the boarding school.
I do think there is a ‘have/have not’ division. I am grateful my kids did fine as ‘average’ students, but there were times I thought they were the only kids who sat in the same classroom all day long, being neither SPED or G&T so never were pulled for special services even though they both had IEPs.
Sometimes the resources have to be put to the best use for the most students, and accommodations for individual students can cost a lot.
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Look, I can’t deny a truth. Even minor accommodations use up financial resources. The uncomfortable result of that truth is that denying kids like mine accommodations wouldn’t make them ‘average.’ It will be impossible for them to be successful. They will fail AND it will hurt them.
Also, if you propose to even it all out, maybe just put them all in the same room with exactly the same opportunity, the long term stress on the overall system will be far greater when you have, for example, a bunch of kids that cannot read entering society. Or a bunch of high school drop outs. It may be frustrating, but accommodations reduce dropout risk, promote successful graduation and then successful employment later. The benefits to society are in the long term not the short term. Many kids who won’t be successful in high school without supports will be able to find success in employment later if they can still learn to read. The ones who can’t are far more likely to later need state assistance, or end up in the justice system. The risk of taking from the overall social system instead of adding to it goes up exponentially.
Still, I think everyone understands your frustration. My other child communicated the challenge of handling medical school while not on stimulants because like you mentioned, it felt like everyone else was on them. But they weren’t needed. They figured out how to study effectively and they were passing. They now have great confidence in their abilities and no substance abuse issues. (I don’t deny stimulants are a great option for students who actually need them, but for the rest, they are a drug, taken daily, that causes serious known long term harm.)
I am also sorry that your students did not get services if they were needed and that you couldn’t fight the system any longer. This kind of fight, and what it takes out of a parent and a family is a whole other discussion. Having to communicate with school administrators to get needs met was the hardest, and also the most unsuccessful thing I’ve ever done in my life. I’m holding the rest of my thoughts, because not one of them is nice.
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Some parents and students have a perception that there is a non-negligible number of people who do not have an actual need who unfairly get extra time on tests. And that is upsetting - both for those people and the students who feel judged.
This concern appears to be most pronounced with students who are competing for the most selective schools.
I don’t know one way or the other to what extent this is a legit concern overall but I can contribute my own experience in case it makes some of those people less aggravated.
One of my nearest and dearest (ND) was diagnosed at a young age with ADHD, inattentive type. Unlike some others, his neurodivergence is clear to people who interact with him. His testing showed it, every teacher raised it. Now a young adult, he has not outgrown his diagnosis and deals with its challenges daily.
Even though his family has means, and some level of expertise (helped friends navigate the IEP process); even though he is significantly impacted by his neurodivergence, he was never given extra time. Not on class tests or on standardized testing. Not in college.
This was true when ND attended public school and private.
That is because you have to demonstrate a substantial limitation in timed testing relative to most peers. If you are compensating to allow you to do pretty well, even if it is not up to your personal full potential, you don’t qualify for extra time. Because, compared to most peers, you have not demonstrated your disability is substantially disadvantaging you.
In other words, from my experience (I don’t have data), a student with a documented disability with a 1520 is unlikely to get time to enable them to get up to the 1580+ apparently needed at the most selective schools.
(Two notes - if this sounds somewhat familiar, I posted earlier but did not express what I meant to - I got all caught up in the realities of day-to-day living for ND. Second, I am not suggesting ND should have gotten extra time.)
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We know someone who did that too (though they got the county to pay for a local private school, not a cross country BS). Then the student went to college, earned a degree, but the family did not follow through to utilize the many connections and opportunities that were offered to connect them with opportunities with companies that offer special services and supports for (potential) employees with disabilities, and they also didn’t follow recommendations, for a very, very long time, to help their child learn important living skills that the student was reportedly capable of and desired to learn (to drive, manage a checkbook, etc). So this student is 40, never held a job of any kind (didn’t even shovel snow in the winter) and lives at home playing video games. In this case, the parents felt they knew better than the many individuals.professionals, etc who tried to offer assistance. And the child suffered.
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Schools have to make hard decisions about limited resources. I wasn’t saying accommodations should be denied but that sometimes what is ‘best’ for one student uses up all the resources for the entire year of services and another arrangement might be just as beneficial to the student but cost less. The IDEA doesn’t guarantee ‘best’. One example I can think of is that the district (a really good district) wanted a student to go to a certain elementary school because that school was set up for the accommodations needed. Nope, the parents and the advocate (who is a friend of mine) said the student is entitled to attend the neighborhood school and then be transported to the other school for the services, or the therapists should travel to the neighborhood school. The student spent more time in vans being transported, didn’t get the best ‘day’ at school (IMO), and ate up a lot of resources. To me the district should be able to centralize services, conserve resources, and serve the most students.
When my daughter got services as a 3 year old, I transported her to a different school. I didn’t want them transporting her.
Maybe the neighborhood school had a great support system full of friends and they were concerned about giving that up. Kids who have support needs can feel very isolated from peers. It’s not something to be discounted in a disabled or neurodiverse student.
Maybe grandma lived near the neighborhood school and was a sole source of day care. Kids with high support needs might not qualify for traditional child care.
My point is, you really have no idea what went into the decision. Sometimes parents have to make hard choices. Sometimes kids have to give something up to get something, depending on need. We are constantly making decisions like that here. Unless we are in that parent’s shoes, we aren’t entitled to understand the reasoning.
I don’t have direct knowledge of this piece because my student was never pulled from classes for support, they had a medical need for accommodations. But also, they would have been deeply upset at missing material, so even if they had needed pull out services that wouldn’t have been an option my family would have considered for them and I guess that would have made us more difficult.
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I do know because the advocate told me. They wanted him to go to the neighborhood school because it was closer to their home. This was not a kid who was going to be mainstreamed into a traditional classroom or daycare (high need medical and mental health needs).
I understand what you are saying but those who can afford advocates get more services because the advocates know how to work the system, file grievances, write up the IEP drafts with every single accommodation listed hoping to get most of them even if a specific one probably won’t help. Does the student really need to sit in the front row? Maybe not but won’t hurt, so include it.
I think my daughter did better in the long run because she didn’t get every accommodation. Her second grade teacher forced her to improve her penmanship and now she has beautiful cursive writing. Some of her friends got to use keyboards as an accommodation and can’t write longhand at all.
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I never used an advocate, but I think that might be illegal, and if it’s not, it’s super unprofessional and gross.
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Educational/special ed advocates are a very common thing. They help families navigate the special ed process. Sometimes they are former educators, sometimes also trained as attorneys. There are even books on how to navigate the special education maze. While some of them are more helpful than others, there are many families who benefit from their services.
In my area there were certain attorneys that would sometimes show up at the special ed meetings with the families.
Some advocates were, IMO, kinda useless, in that they set the family up to be in an adversarial relationship with the evaluator or the school. I remember being on a listserv with local providers and advocates and people interested in special ed issues. One “advocate” was telling parents to demand that certain tests be administered during an assessment and to demand other certain things in an evaluation that were either unhelpful or downright wrong. I chose to get off that list!
I think he might have meant illegal in that the advocate was talking to me about it. She didn’t tell me the schools involved (just the district) or their names. Many of us talk about services available or appropriate all the time, make suggestions, point people in a certain direction.
My kids went to a catholic school so I didn’t always know what was available if they’d have gone to public, but they were still entitled to the services so I wanted to know about them. This advocate’s own children were in a different district and didn’t get as much as the wealthier district (mine) provided. Of course, I was paying higher taxes.
I know what an advocate does.
I do not know the legality of them standing up for a family to help obtain services for a high need student, then turning around and basically disparaging that student, by sharing the complicated needs, with a “friend”
Leaving out names doesn’t make it less unprofessional and discussing it is gross on both sides.
Students and families deserve privacy, and respect, especially in a difficult process with complicated need they deserve to know who is actually on their side.
Appalling behavior.
Oh, you are referring to the advocate sharing information about another student without permission? I didn’t read your post that way. Sorry.
The advocate wasn’t disparaging anyone. She fought for what the family wanted and agreed that the services needed to be provided where the family wanted them. I was the one who thought it was a waste of resourced to transport the child several times in a day.
We discuss a lot of things in groups because our kids shared needs and parents need support. I became friends with the advocate because our kids were both born premature, but she became a professional advocate. Did you only deal with your own kids and never know what services others got, never went to support groups where you discussed what services were helping and how to get them? I found support groups helpful at times and frustrating at times so understand why others would choose not to participate (and I did stop going to them early in my kids’ educational journey. But I did discuss services with professionals, including their therapists, who may have shared another case without identifying the child or family.
Support groups don’t always fit for every child. I can see how they’re helpful in some cases, like with a premature baby, who has no autonomy, and where so many families are navigating similar challenges, but that isn’t the reality for every situation.
So no, we definitely didn’t look to other parents for what our child might be entitled to in school.
And no, I have never had a medical professional discuss another child’s needs with me.
100% this. My kid is amazing at masking hers around just about everyone. Even one of her parents and every teacher she had until high school. And it’s exhausting. And her grades were impacted. And now she has what she needs to truly show her capabilities.
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Just read this. Experiences from a Stanford student. I hope she has her peace at Stanford.
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Our best, brightest and most ethical……not
That’s depressing - not just that students would game the system, but that they have zero remorse about it.
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And these are the creme de la creme. And we wonder how we get the slimes that run our government, etc or corporations. Welcome to the next generation.
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