Updated in #23 - DS failed school vision & hearing screens

[Gena]

Update in post #23, if anyone is interested.

******************

I got a letter from the school today that DS failed both the vision and the hearing screens at school last week. I was unaware that these screens were being done. The school sent a bunch of paperwork that needs to be filled put by vision and hearing specialists.

I am extremely annoyed, to put it mildly. DS's IEP indicated that he is visually impaired, so why on earth would they do the routine vision screening? The purpose of the screening is to identify children who may have undiagnosed problems, NOT to create extra paperwork for the parents and doctors of kids who have known impairments. DS currently sees his eye doctor every other month, so the required paperwork is going to have to wait until his next scheduled appointment.

As for the hearing test, that annoys me too. DS always fails the school screening because he will not cooperate with the test. Now I have to call Children's Hospital and set up another full evaluation to satisfy the school. Like my kid doesn't have enough doctor appointments already.

[hillview]

Seriously they didn't tell you -- that would REALLY bother me. So sorry you have to deal with this. I might call the school and discuss.
/hillary

[Fairy]

Administrative crap. (((Hugs)))

[SnuggleBuggles]

That stinks. Last year a whole lot of kids at ds1's school failed the hearing test, way more than should have failed and none who had ever even been thought to been at risk. I don't recall that follow up tests were required at our school and the info was an FYI...I'm not sure. But, the parents I knew freaked out, had the extra screening at the hospital done and every single kid was totally fine. Their testing method, come to find out, was horribly flawed.

I hope all is well.

Beth

[Edensmum]

Why do you need to satisfy the school? Can't you just opt out of medical exams at school, that seems like a huge violation, especially for a child who is being closely monitored. The school ought to be satisfied knowing he is being monitored, it's the kids who are not and are at risk that these screenings are trying to catch. I would be really ticked off. FWIW.

[bubbaray]

How can they test him without your consent? What happens if you do not take him for further hearing testing?

[Gena]

Seriously they didn't tell you -- that would REALLY bother me. So sorry you have to deal with this. I might call the school and discuss.
/hillary


How can they test him without your consent? What happens if you do not take him for further hearing testing?

District policy states that they do not need parental consent or notification for non-invasive routine screenings for vision, hearing, and scoliosis. I need to look into this further to see what the state department of education says about this and if there are supposed to be exceptions dot students with disabilities.

As for what happens if we don't take him for further testing, I know that there would be harassing letters and phone calls for the rest of the school year. I don't know if they can do anything beyond that legally. But I also know that not getting the testing done would create difficulties and bad relations at the next IEP meeting.

ETA: I do want DS to have a comprehensive hearing test done, but our plan has been to wait until after he is 7. (Birthday in late spring, so probably test during the summer.) That is the youngest age that the audiologists at Children's Hospital will include testing for Auditory Processing Disorder as part of the evaluation.

[Pear]

The scoliosis test involves removing clothing. They don't need consent for that?!?

[bubbaray]

But I also know that not getting the testing done would create difficulties and bad relations at the next IEP meeting.


In what way -- not being snarky, but I've never been involved in an IEP and am not sure what is involved. Can they rescind the IEP if you don't bring the letters??

If they really can not do anything, I'd just ignore their letters. :innocent: It depends on how conflict adverse you are -- me, conflict d/n bother me, so they could harass me all they wanted and it wouldn't change my mind if there truly was nothing they could do if I refused to do what they wanted me to.

FWIW, I had to sign consent papers before the school would allow the kids to have the screening tests. As it was, DD#1 missed her vision test, but she goes to an optometrist anyway, so no biggie. I never heard from the school about her missing that test.

[Gena]

In what way -- not being snarky, but I've never been involved in an IEP and am not sure what is involved. Can they rescind the IEP if you don't bring the letters??


They can't rescind the IEP, but it gives the impression that we are not willing to cooperate with the district's requests and that can lead to an adversarial relationship. IEP meetings go much better when there are "good feelings" all around. Since we plan to be in this district for the long haul, it is to DS's benefit for us to "play nice" with the district as much as possible. It's a matter of having to choose our battles. So I need to decide if I want to choose the battle of a hearing test, or the battle of increased accommodations and services.

[Gena]

The scoliosis test involves removing clothing. They don't need consent for that?!?

Apparently they don't. :(

[MamaKath]

Why do you need to satisfy the school? Can't you just opt out of medical exams at school, that seems like a huge violation, especially for a child who is being closely monitored. The school ought to be satisfied knowing he is being monitored, it's the kids who are not and are at risk that these screenings are trying to catch. I would be really ticked off. FWIW.
I would send a note saying he is being monitored and leave it at that. Don't know what legal responsibility you have to actually have the paperwork done. I have never heard of those things being mandatory, I always thought it was more of a "Heads Up!"

[WolfpackMom]

The scoliosis test involves removing clothing. They don't need consent for that?!?

It can be done clothed so I wouldn't jump to that assumption.

OP sorry about the extra hassle, what a pain! Maybe if you show he goes to the optometrist every month you can at least get out of that part? Good luck!!

[crl]

I'd actually bring it up at the next IEP meeting and request as an accommodation that he be excluded from all future routine screening.

Catherine

[dogmom]

Why do you need to satisfy the school? Can't you just opt out of medical exams at school, that seems like a huge violation, especially for a child who is being closely monitored. The school ought to be satisfied knowing he is being monitored, it's the kids who are not and are at risk that these screenings are trying to catch. I would be really ticked off. FWIW.

Often this kind of stuff is determined by laws passed by state legislatures, which don't get updated. Such as mass screening for scoliosis. (Research doesn't indicate it's important now.) Like now our schools have to send BMI homes because of a new law. So sometimes there is little wiggle room. On top of that medical policies at a district level are usually proposed by administrators, but need to be approved to school committees, which may know nothing about health or education. I ran into this when I asked about the out of date lice policy at my school. (sending kids home right way if discovered, not recommended now) So although the head nurse for the district basically agreed with me, she was very careful to say she adheres to the policies and she does not set the policies. I lot of these laws/policies date from before well child visits (think 1930-40's).

Not that any of this helps, it is a royal pain.

[n2ou]

In my district, to stay in legal compliance with the IEP, vision and hearing need be screened for yearly.

Maybe that is it?

[arivecchi]

I am so annoyed for you. :irked:

[bisous]

I totally get why you feel you need to do this. I also have a son that needed a lot from the school district and I felt like I needed to jump through all the hoops to maintain their good will. I think it would be great if you could get some kind of special provision added to your IEP since you clearly take care of these areas (hearing and vision) on your own and in much better conditions for your DS!

[vludmilla]

Don't know if this applies in your state but there are often state regulations that require the school to do these screenings. Not sure if there are provisions for excusing children with known impairments from the screenings. Of course, it would make sense to do that but sometimes laws don't make sense, right?

[mom2binsd]

When I was in the schools in Special Ed as an SLP I'd always make sure that any children with known hearing impairments be excluded, of course if I had been away the teacher might not have thought to let the testers know this (they should have a list of children with hearing impairments).

If they don't have any documentation of the child being followed by an Audiologist or ENT they may not have known it.

Often the testing is organized by the district Audiologists who may not be familiar with the students at a school if she/he doesn't have students there.

As far as the vision, as long as you can document that he is followed and that you are taking him for an audio eval in the spring that should suffice.

Sorry it's extra paperwork, I think the schools just get overwhelmed sometimes and don't always do the logical thing.

I know here they do not do scoliosis exams at the school.

In IL they passed a law and for entry to K and 2nd grade FULL vision and dental exams(not screenings) are required in addition to physicals.

[JBaxter]

My ped does the hearing vision screenings but MANY times I got notes home about failing vision/ hearing screenings. Finally I asked the school not to test my kids. 2 of them had glasses but several times they tested them without their glasses on DUH. One of my favorite notes was Nathan's that was circled in red sharpie telling me he as nearly deaf. Ummm did ya ask the kid if it was his first day back after a double ear/sinus infection? Uh nope. I got a follow up call from the health department on that one and I shared what I though of their process.

[Gena]

Thanks for the support everyone.

The school is not supposed to do vision screenings on students with known vision impairments. The fact that the school did perform this screening raises our concern that the school staff do not have an adequate understanding of DS's vision impairment. So I have decided to use this as an opportunity to educate the school about DS's specific vision problems as well as albinism in general.

Therefore I've written a letter to the school nurse and principal acknowledging the packet sent home and outlining our concerns.

Currently, DS sees his regular Pediatric Ophthamologist (PO) every 8 weeks (due to patching for amblyopia). Additionally he saw a PO at Cincinnati Children's Hospital a couple of months ago for a second opinion. In the letter I summarized the findings of this PO: Albinism (type OCA2 suspected), extreme hyperopia, extreme astigmatism, anisometropia, amblyopia. The PO also found intermittent exotropia, severe foveal hypoplasia, and bilateral transillumination defects which are all consistent with the albinism diagnosis.

I went on to explain that due to these physical defects of the eye, DS's acuity will never be 20/20, even with his glasses. His best corrected vision is 20/40 - 20/50, which is very good for someone with albinism. However this is his acuity in a testing environment, which has ideal conditions. It may not reflect his vision acuity in real world environments. Also DS displays other vision problems associated with this disorder: photophobia, lack of stereo vision, frequent eyestrain and eye fatigue.

I requested that we have a discussion with the apprpriate personnel to determine if at this time we should conduct a Functional Vision Assessment (FVA), which will help us determine how DS uses his vision in the classroom environment and if additional accommodations need to be added to his IEP.

I am including a full copy of the PO's written report and several information sheets from the National Organization for Albinism and Hypopigmentation, which explain albinism and discuss the difficulties that students with albinism have in the classroom.

Regarding the hearing screening, I wrote that DS finds this testing very difficult and stressful. His Developmental Pediatrician recommends that we wait until age 7 for a full hearing evaluation (DS is currently 6.5). At that age the evaluation can include testing for Auditory Processing Disorders. Unless DS's teachers or therapists have immediate concerns about his hearing, we will follow the DP's recommendation.

[Gena]

Thanks to anyone who is still reading.

I got a phone call from the school nurse this morning. It was not pleasant. She received my letter and the information I sent (see above post).

Nurse said that state law requires all students be screened in K and the odd numbered grades. Special education students are required to be screened each year. I reminded her that the law also says screening is not required if the student has had testing done by a doctor in the previous 12 months and Nurse said that she is not aware of that provision in the law. Nurse said that they have to test even the kids with glasses because how else will the school know that the glasses work? (!!!)

However Nurse did say that we can parental opt-out of future screenings with a written statement. I told her that we do not see the point of the school continuing to do vision screening and we will opt out of those.

I asked if she had had the opportunity to review all the information we sent about albinism. Nurse said she did not need the additional information sheets we sent because she has had students with "albino-ism" before. (I had to bite my tongue here because really, if you have a Masters in Nursing I expect you to be able to pronounce my kid's disorders.) I asked if she could pass the information along to the staff members who work with DS as well as add the info to DS's school file. She said that she would give the info to the teachers and that she would write it in big letters across the cover of his file.

I asked about having a Functional Vision Assesment done to see how DS's vision problems affect his classroom performance. Nurse doesn't know anything about that. So I will have to follow up with the Special Ed director.

Nurse is really pushing for full hearing eval. I explained again that we plan to have one after he turns 7 and can do more extensive testing (Auditory Processing). This is on the advice of the Developmental Ped. Nurse thinks we should not wait and have testing done immediately. I told her I would discuss it with the dev ped. She was not happy about this.

DH and I do not have any concerns about DS's hearing, except for auditory processing. We asked his teachers about this during conferences a couple of months ago and they do not have concerns about his actual hearing either. If anyone who works with DS on a regular basis had concerns about his hearing we would have him tested immediately, but that is not the case.

So I'm still really frustrated and it seems that nothing has been resolved. I think the Nurse only cares about her paperwork trail and what she has to report to the state, not about what is really going on with DS.

[WolfpackMom]

I think the Nurse only cares about her paperwork trail and what she has to report to the state, not about what is really going on with DS.

Thats pretty clear! geesh. Have you been able to speak to the principal about the documentation you sent in? Maybe he can help...? Sorry that you are having to deal with all of this! It does sound like the nurse is just trying to get in the state requirements and probably avoid having herself get in trouble or anything, she also sounds like she needs to read more about the actual laws and rules considering she didnt know about the provisions for those who have already had recent screening.

[arivecchi]

How frustrating. Clearly, you have a much better grasp of things than this nurse.

[MamaMolly]

So I'm still really frustrated and it seems that nothing has been resolved. I think the Nurse only cares about her paperwork trail and what she has to report to the state, not about what is really going on with DS.

ITA with this, and IMO it is time to go over the nurse's head.

[gatorsmom]

Gena, just wanted to say, you amaze me. Truly. I would have lost all patience and gone ape-shi+ by now. I can't believe how many fronts you have to fight at the same time. It must be exhausting. :bowdown: :bowdown:

[Uno-Mom]

...because she has had students with "albino-ism" before.

Ooooh. Them's fighting words for me.

I'm not even a parent in this situation ... I'm just a support professional/ often advocate. But it makes me boil in empathy!

I work with lots of kids and adults who share superficial diagnoses. I would expect a punch in the mouth from anybody if I said something like that. Even if I feel somebody's situation fits a familiar pattern, I'm smart enough to shut my yap about that. And my initial judgements are often proved at least part wrong once I get to know the person individually.

[Melanie]

Ugh. That sounds so frustrating! I don't know how you stayed so calm. Good for you.

[Fairy]

Still reading.

Gena, you're such a great advocate for your DS. Thank goodness he was born to you. Don't take any guff from Nurse, she clearly doens't know her Albino'ism from a hole in the wall (oh, wait, she did have a student with that once, nevermind).

More mojo headed your way.

[mom2binsd]

Gena...sounds like she is a know-it-all and isn't really listening to you at all.

I've worked with some really great school nurses who would have welcomed your involvement and all the great information you put together for her.

I would absolutely set up a meeting with his teacher and principal and any other specialist at the school to review the nurses concerns, and then the prinicipal can tell her to stop!

[dr mom]

Gena, you must be such a powerful advocate for your DS - he is so lucky to have you.

But, he is also very lucky to have a school Nurse with so much experience in albino-ism that she just intuitively knows even better than his Developmental Ped and other medical specialists, how best to treat your son. What an interesting character she must be. You are a saint for not telling her off, it must be so frustrating...