anyone know about Rusk Institute at NYU?

[Guest guest]

My son Elias (4 yo, bilateral mod-to-severe SN loss due to ototoxic meds in

cancer treatment) will finally be seen by Sloan-Kettering's Late Effects

specialist in November. I am told that this specialist typically sends kids

to the Rusk Institute at NYU for neuropsych evals. Elias has been in first

early intervention and now preschool special ed, so he has been evaluated

and evaluated. However, if Rusk has something more to offer for kids with

hearing loss, I don't want to pass up the opportunity. It might be a good

way to find out if Elias needs more specialized services than what he gets.

Has anyone on this list dealt with Rusk? Do they have specialists in hearing

impairment? Should I ask for a particular specialist or department?

BTW, I think it is ridiculous that Sloan-Kettering, knowing that 62% of the

kids who go through their high risk neuroblastoma protocol end up with

hearing loss severe enough to need hearing aids, doesn't send the kids for

this type of evaluation much sooner. They make you wait 2 years post

treatment to see the Late Effects guy, and then it takes several months to

get the appt, and several more to get the evals, so the kids are often THREE

years out before they get the testing done.

thanks,

Bonnie

[Guest guest]

Bonnie-

I took My son Noah (23m, bilateral hearing mod - mod severe due to CMV and other

dev. delays), to RUSK to see a physiatrist to address motor delays and keep on

top of issues related to his orthodics. I saw a Dr. Joan Gold, so far so good.

They are sopposed to be the best in terms of physical therapy. I was not aware

that they had services for hearing impairment.

Lynn

anyone know about Rusk Institute at NYU?

My son Elias (4 yo, bilateral mod-to-severe SN loss due to ototoxic meds in

cancer treatment) will finally be seen by Sloan-Kettering's Late Effects

specialist in November. I am told that this specialist typically sends kids

to the Rusk Institute at NYU for neuropsych evals. Elias has been in first

early intervention and now preschool special ed, so he has been evaluated

and evaluated. However, if Rusk has something more to offer for kids with

hearing loss, I don't want to pass up the opportunity. It might be a good

way to find out if Elias needs more specialized services than what he gets.

Has anyone on this list dealt with Rusk? Do they have specialists in hearing

impairment? Should I ask for a particular specialist or department?

BTW, I think it is ridiculous that Sloan-Kettering, knowing that 62% of the

kids who go through their high risk neuroblastoma protocol end up with

hearing loss severe enough to need hearing aids, doesn't send the kids for

this type of evaluation much sooner. They make you wait 2 years post

treatment to see the Late Effects guy, and then it takes several months to

get the appt, and several more to get the evals, so the kids are often THREE

years out before they get the testing done.

thanks,

Bonnie

[Guest guest]

Bonnie, aren't you in NY?? Are you near NY City?? You could get an independent

hearing, language, speech etc eval at someplace like the League for the Hard of

Hearing or e auditory oral school in NY City. They would be ready to

address all of the issues related to the hearing loss - the

hearing/listening/language and speech issues. We did a comprehensive eval at an

oral school in Atlanta, and it was absolutely wonderful. It was helpful beyond

belief and also very educational for us. It really helped us know the right

direction to go in with Maggie. Isn't your school kind of clueless about the

hearing loss issues and not willing to put the FM in the IEP??

-----

[Guest guest]

We are just outside of NYC. Wouldn't I need a referral to go to one of those

places?

The other parents who deal with the Late Effects team at Sloan tell me they

only

like to refer to Rusk. I have no idea why.

I'm also a little scared of e. They sound like the sort of place that

might get

our school district all uptight. Has anyone dealt with them in NYC? Are they

diplomatic when they deal with the school districts? I don't know the other

place

you mention. Where is it?

I have found that the name " Sloan-Kettering " goes a long way with our school

district,

so I was hoping to get them to refer Elias for this evaluation. That way, I

could

tell the district that Sloan sent us.

Bonnie

>

>

> Bonnie, aren't you in NY?? Are you near NY City?? You could get an

> independent hearing, language, speech etc eval at someplace like the League

> for the Hard of Hearing or e auditory oral school in NY City. They

> would be ready to address all of the issues related to the hearing loss -

> the hearing/listening/language and speech issues. We did a comprehensive

> eval at an oral school in Atlanta, and it was absolutely wonderful. It was

> helpful beyond belief and also very educational for us. It really helped us

> know the right direction to go in with Maggie. Isn't your school kind of

> clueless about the hearing loss issues and not willing to put the FM in the

> IEP??

> -----

>

>

>

[Guest guest]

Bonnie,

We live in RI and my son was evaluated at the MA e School. He has

a complicated hearing loss history, and I had had very little

appropriate guidance before his evaluation there. Not only were they

wonderful with my son and with me, but they produced a very

comprehensive report which brought up many of my concerns in language

that the school could deal with. They put all the " pieces " of my son

together (eg., they wanted his most recent eye test).

We didn't need a referral. I just called them up and found an available

testing slot. I went back to the IEP-504 group which had previously

tried to get rid of me by telling me that they didn't have the

facilities to evaluate my son. I told them that e could. They had

no choice, legally, at that point but to pay for e. My feeling is

that once they had to pay them, they felt more committed to accepting

their advice. If the school system had not paid, could still have had

him evaluated there, but I would have had to pay.

Re: anyone know about Rusk Institute at NYU?

We are just outside of NYC. Wouldn't I need a referral to go

to one of those

places?

The other parents who deal with the Late Effects team at Sloan tell me

they

only

like to refer to Rusk. I have no idea why.

I'm also a little scared of e. They sound like the sort of place

that

might get

our school district all uptight. Has anyone dealt with them in NYC?

Are they

diplomatic when they deal with the school districts? I don't know the

other

place

you mention. Where is it?

I have found that the name " Sloan-Kettering " goes a long way with our

school

district,

so I was hoping to get them to refer Elias for this evaluation. That

way, I

could

tell the district that Sloan sent us.

Bonnie

>

>

> Bonnie, aren't you in NY?? Are you near NY City?? You could get an

> independent hearing, language, speech etc eval at someplace like the

League

> for the Hard of Hearing or e auditory oral school in NY City.

They

> would be ready to address all of the issues related to the hearing

loss -

> the hearing/listening/language and speech issues. We did a

comprehensive

> eval at an oral school in Atlanta, and it was absolutely wonderful.

It was

> helpful beyond belief and also very educational for us. It really

helped us

> know the right direction to go in with Maggie. Isn't your school

kind of

> clueless about the hearing loss issues and not willing to put the FM

in the

> IEP??

> -----

>

>

>

[Guest guest]

Well, I'm not sure why they'd get uptight about e but love Sloan

Kettering. Since e is education and SLoan is medical, maybe they feel

like Sloan isn't telling them what they should already know or something. But

e has a great reputation for working with school districts. They have a

" Mainstream Center " that works specifically with school systems, both for kids

leaving e and kids from the outside. I don't think you'd need a referral

to e or the League, they are used to working with parents. I've worked

with e in ville FL and the person there was terrific and the school

system seemed to be willing to listen to her since she had the requisite

education and experience. You could ask the Sloan Kettering docs to refer to

e or the League or somewhere else for that matter, they may very well be

willing to do that, especially since what you are looking for is some help and

guidance with the school situation relating to hearing. I looked at Rusk and

they do have speech pathology but not audiology or services related to hearing

loss specifically. Oh, the League for the Hard of Hearing is in Manhattan.

There are also some cochlear implant places in MYC that might be able to help,

though they might not be able to do a comprehensive school eval.

[Guest guest]

is right - I had my son Gabe evaluated at the League for the Hard of

Hearing in Manhattan. They are expert and have years of history working only

with children with hearing loss, fitting hearing aids, they have an

auditory-oral program and do full speech, language, and psychological

evaluations. I know that one of the children there right now for therapy was

also referred from Sloan Kettering. I'm sure they can help you. I'm pretty

certain that Rusk doesn't really work with children with hearing loss at all

(and I don't think that e does psychological evaluations but I'm not

sure). Their main phone number is .

[Guest guest]

OK, thanks. I actually think a psychological evaluation would be in order.

Elias seems

to suffer from something like PTSD (as a lot of the cancer kids do) and was

in therapy

last year with one of the people who works at Sloan. Besides that, I am

mainly concerned

with the educational impact of his hearing loss. Do you know if the other

kid from

Sloan-Kettering is a neuroblastoma kid? It is pretty likely since that is

the treatment

protocol that causes hearing loss in so many kids.

Bonnie

>

> is right - I had my son Gabe evaluated at the League for the Hard

> of

> Hearing in Manhattan. They are expert and have years of history working

> only

> with children with hearing loss, fitting hearing aids, they have an

> auditory-oral program and do full speech, language, and psychological

> evaluations. I know that one of the children there right now for therapy

> was

> also referred from Sloan Kettering. I'm sure they can help you. I'm pretty

> certain that Rusk doesn't really work with children with hearing loss at

> all

> (and I don't think that e does psychological evaluations but I'm not

> sure). Their main phone number is .

>

>

>

>

[Guest guest]

My older son, Tom, was evaluated at e in Northampton MA when he was

in first grade. We didn't need a referral and our school district paid

for it. At least at the time Tom had his CEE (comprehensive education

evaluation) done, they did do a psych eval, in addition to audiology,

educational, speech/language - it was very comprehensive and gave us the

answers we needed. I can't say enough about it - it was excellent. And

the report that they generate was fabulous - soup to nuts...

Barbara

casey cat wrote:

> is right - I had my son Gabe evaluated at the League for the Hard of

> Hearing in Manhattan. They are expert and have years of history working only

> with children with hearing loss, fitting hearing aids, they have an

> auditory-oral program and do full speech, language, and psychological

> evaluations. I know that one of the children there right now for therapy was

> also referred from Sloan Kettering. I'm sure they can help you. I'm pretty

> certain that Rusk doesn't really work with children with hearing loss at all

> (and I don't think that e does psychological evaluations but I'm not

> sure). Their main phone number is .

>

>

>

>

[Guest guest]

What did you do to convince the school district to pay? Our school district

isn't taking the hearing loss seriously (they see him as developmentally

delayed due to treatment), so I want to use the evaluation to help convince

them to pay attention to the hearing loss. But if they aren't taking the

hearing loss seriously enough to even categorize him as hearing impaired,

why would they pay for an evaluation at a place like e? BTW, my son is

bilateral moderate-to-severe SN loss, with hearing aids.

So I would be interested in knowing the strategies to get a school district

to pay. I just assumed I would have to pay. I think if I get the referral

from Sloan-Kettering, my insurance will pay. That is what happened with

another friend whose child was treated at Sloan - her school district

wouldn't pay for the neuropsych evals at Rusk, but her insurance would pay.

Also, my son had educational, speech, and physical evals done 2 years ago.

But it wasn't done at a place that specializes in hearing impaired kids,

and at the time it was done, we didn't know yet the extent of his hearing

loss. Will that make a difference?

thanks,

Bonnie

>

> My older son, Tom, was evaluated at e in Northampton MA when he was

>

> in first grade. We didn't need a referral and our school district paid

> for it. At least at the time Tom had his CEE (comprehensive education

> evaluation) done, they did do a psych eval, in addition to audiology,

> educational, speech/language - it was very comprehensive and gave us the

> answers we needed. I can't say enough about it - it was excellent. And

> the report that they generate was fabulous - soup to nuts...

>

> Barbara

>

>

> casey cat wrote:

> > is right - I had my son Gabe evaluated at the League for the Hard

> of

> > Hearing in Manhattan. They are expert and have years of history working

> only

> > with children with hearing loss, fitting hearing aids, they have an

> > auditory-oral program and do full speech, language, and psychological

> > evaluations. I know that one of the children there right now for therapy

> was

> > also referred from Sloan Kettering. I'm sure they can help you. I'm

> pretty

> > certain that Rusk doesn't really work with children with hearing loss at

> all

> > (and I don't think that e does psychological evaluations but I'm

> not

> > sure). Their main phone number is .

> >

> >

> >

> >

>

>

>

--

Bonnie

[Guest guest]

In a message dated 9/12/2006 10:07:04 P.M. Eastern Standard Time,

pcknott@... writes:

I don't think you'd need a referral to e or the League, they are used

to working with parents

The people I've talked with who have gone to both of these places have

simply picked up the phone and called to make arrangements. No referral, no

questions about whether their request was valid or to prove their child was

D/HOH

and warranted the assessment.

As for the cost, some paid themselves and some forced the district to pick

up the tab. I don't think regular medical insurance will cover either of them,

but I'm not sure. It might be covered under the psych category, but I tend to

doubt it.

Best -- Jill

[Guest guest]

In a message dated 9/13/2006 9:30:07 A.M. Eastern Standard Time,

bkmackellar@... writes:

What did you do to convince the school district to pay? Our school district

isn't taking the hearing loss seriously (they see him as developmentally

delayed due to treatment), so I want to use the evaluation to help convince

them to pay attention to the hearing loss. But if they aren't taking the

hearing loss seriously enough to even categorize him as hearing impaired,

why would they pay for an evaluation at a place like e? BTW, my son is

bilateral moderate-to-bilateral moderate-to- severe SN l

Bonnie,

For us, we had to get assessments done and present them to the IEP team

before they would agree to change his category to reflect his hearing loss and

to

acknowledge his hearing needs in the IEP. Prior to that they had him as

" other health impaired " claiming he had several issues and that they could not

simply label him as hearing impaired.

I said, that was fine with me as long as the hearing issues were included

within the IEP. And then we went round and round and round with them saying that

his hearing loss was not educationally significant.

Ours was a long and unpleasant process. For us, I had to get letters and

assessments regarding his hearing loss first, and used that to force the

district to do what they should.

I found out about the TODs working through BOCES and insisted that they

bring one in to do an assessment on Ian. I believe that they agreed to that

thinking she would tell them there was nothing wrong -- because Ian spoke so

clearly and seemed to function so well in their own one-on-one testing. They

were

wrong. She confirmed what OUR doctors had said.

I'd allow the Rusk assessment, you may find what you need to push your

district in their report.

Best -- Jill

[Guest guest]

Bonnie, Having it done at a place and by people who know hearing loss is the key

- it will make all the difference. Hearing loss is considered a " developmental

disability " - however it is the only one that can be ameliorated! If your

child has MR, there is nothing you can do to give him more IQ points. But with

hearing loss you can!! So treating him as if he has a developmental disability

leaves out the most important part of the equation - that with hearing loss you

DON " T have to end up with a child who is developmentally disabled. Sure he may

have some other issues due to treatment, but since hearing is the way into the

brain for almost all the information you learn in school, it HAS TO BE

ADDRESSED FIRST AND FOREMOST!

We fought a wicked battle with our school district to get them to pay for our

eval. Most school districts aren't as bad as ours is. So don't assume your

district will be as bad, hateful and lying as mine was! So here are some

ideas. First, if Sloan will refer you for the eval and your insurance will pay,

that is great. That would be the quickest and easiest emotionally. You may

have to pay for the evaluators to come to your IEP but this would be the best

way to do it. Second, ask your school district to have him evaluated by an

agency that understands oral, HOH kids. They may say OK. They may send him to

places you suggest. Then you are in good shape. Then the school will pay for

the eval team person to come to your IEP. 3. Not your first choice, but use if

all else fails. You can force the school's hand. This is what has to happen

first. They have to have an evaluation that they have done. You have to disagree

with the findings of the evaluation. It can be that you don't think the proper

things have been evaluated. Or that you disagree with the results - they say

Elias has an IQ of X and you don't agree with that. Or that they didn't test

his comprehension of language and auditory information. Or sometimes they

haven't actually even done an evaluation. You don't have to be terribly specific

and tie yourself in knots with allegations, just say that you disagree with the

evaluation. Once you DISAGREE in writing with their evaluation, then it is

time to ask for an Independent Educational Evaluation (IEE) at public expense.

(you can do this in the same letter) They will either pay for it or they have to

file due process against you to go to court and convince a judge that they have

evaluated him properly. Usually, 99.99% of the time they will pay for the

eval. The place you choose to actually do the eval can help you with the

mechanics of what is lacking/wrong etc in their eval. Be aware that the

evaluators are going to not badmouth the school system no matter how bad they

are. They are the ones you want to be able to work with your school system so

this makes sense later.

Re the neuropsych evals. The first and bedrock piece of a psych/educational

eval is the IQ test. There is a verbal and a non-verbal component and these are

usually averaged for a composite IQ score. But with hearing impaired kids, the

verbal IQ section DOES NOT measure verbal IQ, it measures what they have been

taught. And it is often much lower than the non-verbal. 15 points or more is

educationally significant in most states, it is 1 SD below the mean. That is a

measurement that can be used in most states to show that the child has an

educationally significant hearing loss. But if the evaluator doesn't know this,

then they may say, gee your son has an incredibly low verbal IQ, you need to

lower your expectations in those areas. When the opposite is true - the child

just hasn't had the correct education to try to fix the gap.

A great place to understand all this evaluation stuff is the slaw.com

website.

Re: Re: anyone know about Rusk Institute at NYU?

>

>What did you do to convince the school district to pay? Our school district

>isn't taking the hearing loss seriously (they see him as developmentally

>delayed due to treatment), so I want to use the evaluation to help convince

>them to pay attention to the hearing loss. But if they aren't taking the

>hearing loss seriously enough to even categorize him as hearing impaired,

>why would they pay for an evaluation at a place like e? BTW, my son is

>bilateral moderate-to-severe SN loss, with hearing aids.

>

>So I would be interested in knowing the strategies to get a school district

>to pay. I just assumed I would have to pay. I think if I get the referral

>from Sloan-Kettering, my insurance will pay. That is what happened with

>another friend whose child was treated at Sloan - her school district

>wouldn't pay for the neuropsych evals at Rusk, but her insurance would pay.

>

>Also, my son had educational, speech, and physical evals done 2 years ago.

>But it wasn't done at a place that specializes in hearing impaired kids,

>and at the time it was done, we didn't know yet the extent of his hearing

>loss. Will that make a difference?

>

>thanks,

>Bonnie

>

>

>>

>> My older son, Tom, was evaluated at e in Northampton MA when he was

>>

>> in first grade. We didn't need a referral and our school district paid

>> for it. At least at the time Tom had his CEE (comprehensive education

>> evaluation) done, they did do a psych eval, in addition to audiology,

>> educational, speech/language - it was very comprehensive and gave us the

>> answers we needed. I can't say enough about it - it was excellent. And

>> the report that they generate was fabulous - soup to nuts...

>>

>> Barbara

>>

>>

>> casey cat wrote:

>> > is right - I had my son Gabe evaluated at the League for the Hard

>> of

>> > Hearing in Manhattan. They are expert and have years of history working

>> only

>> > with children with hearing loss, fitting hearing aids, they have an

>> > auditory-oral program and do full speech, language, and psychological

>> > evaluations. I know that one of the children there right now for therapy

>> was

>> > also referred from Sloan Kettering. I'm sure they can help you. I'm

>> pretty

>> > certain that Rusk doesn't really work with children with hearing loss at

>> all

>> > (and I don't think that e does psychological evaluations but I'm

>> not

>> > sure). Their main phone number is .

>> >

>> >

>> >

>> >

>>

>>

>>

>

>

>

>--

>Bonnie

>

>

>

[Guest guest]

In a message dated 9/13/2006 10:47:56 A.M. Eastern Standard Time,

bkmackellar@... writes:

total boredom in first grade because his skills are

way ahead of what they teach

If they won't address his academically advanced needs, will they consider

skipping him up a grade? My daughter is quite bright, (as in getting 100%

accuracy on the state tests). And luckily our school had the academic

enrichments

in place for the elementary schools. (We'll see how they are in middle

school, she's just starting that program) But had our budget been voted down a

second time, all gifted programs would have been cut. Had that happened, we

were going to have her skipped a grade while we figured out if any of the local

private schools were an option.

If he is socially adaptable or flexible enough, skipping a grade may be the

solution. Private school is SO expensive. Plus just because it's private

doesn't mean it's enriched, I found that out when I started to review our local

options.

I've always had this same problem with my younger child, if not kept

engaged, she will talk and take over the classroom. Not exactly a discipline

problem, but certainly a disrupting influence.

Best -- Jill

[Guest guest]

One of the problems I have is knowing what kinds of evaluations SHOULD be

done, and what they are called. I don't have a background in education, so

it is very confusing and puts me at a disadvantage with respect to the

school system. I've read a couple of books on kids with hearing loss, but

they don't seem to really say in detail what a child needs in terms of

evaluations -they focus more on types of hearing aids and FM systems (which

is useful too).

First, I thought IQ tests weren't valid with small kids? My son is 4. I

distinctly remember reading that on a site for gifted kids (yes, I have that

battle too, with my older son).

My son was evaluated two years ago, when he went from Early Intervention to

preschool special ed. It was done at Blythedale Children's Hospital, which

is a rehab hospital. He was almost 3 at the time. He had a kind of

intelligence test done, but I don't know what it was called. He measured on

target on that test. He also was evaluated for gross motor skills, fine

motor skills, and speech, and was significantly delayed in all those areas.

That set of evaluations has formed the basis for all his services since. At

the time, we did not know he needed hearing aids although we knew he was

high risk for hearing loss.

His current evaluations were quickies done by his therapists (I saw them

done, I know). They are strictly observational. I don't disagree with them

at all - there is no question he is delayed in his gross and fine motor

skills, and in speech. I simply want more information, done in the light of

his now-known hearing loss, and I want support for classifcation as hearing

impaired, and for including services appropriate to a hearing impaired child

on his IEP. So I don't want to go the route of officially disagreeing with

the current evaluations, because I don't.

How do I request that the school district pay for the evaluation? Do I do it

in writing? Are there specific terms I need to use? BTW, I've visited the

slaw site, but I have a lot of trouble finding what I need on that

site. Nothing seems to ever be pertinent to my situation, and I have trouble

with the terminology. We had an issue this summer when Elias lost his PT

services due to a therapist suddenly quitting - the school district could

not find a new therapist quickly who could meet his complicated schedule so

he lost all his PT services. I could not find anything on slaw or

elsewhere that addressed that kind of problem (losing services due to

scheduling problems).

Sigh. This is a fulltime job, it seems. I'm also trying to deal with my

older kid's problems (total boredom in first grade because his skills are

way ahead of what they teach). Sometimes I worry that Elias may turn out to

be a 2E kid, which will be even dicier I am sure. Elias, like his brother,

has a lot of very advanced skills, but that speech delay and his fine motor

problems make it seem like he is behind.

thanks for all the help here!

Bonnie

>

>

> Re the neuropsych evals. The first and bedrock piece of a

> psych/educational eval is the IQ test. There is a verbal and a non-verbal

> component and these are usually averaged for a composite IQ score. But with

> hearing impaired kids, the verbal IQ section DOES NOT measure verbal IQ, it

> measures what they have been taught. And it is often much lower than the

> non-verbal. 15 points or more is educationally significant in most states,

> it is 1 SD below the mean. That is a measurement that can be used in most

> states to show that the child has an educationally significant hearing loss.

> But if the evaluator doesn't know this, then they may say, gee your son has

> an incredibly low verbal IQ, you need to lower your expectations in those

> areas. When the opposite is true - the child just hasn't had the correct

> education to try to fix the gap.

>

> A great place to understand all this evaluation stuff is the

> slaw.com website.

>

>

[Guest guest]

Why did your insurance company pay for the eval? I wonder if ours would if

Yale said it had to be done. I have to look into this.

Trish

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

What did you do to convince the school district to pay? Our school district

isn't taking the hearing loss seriously (they see him as developmentally

delayed due to treatment), so I want to use the evaluation to help convince

them to pay attention to the hearing loss. But if they aren't taking the

hearing loss seriously enough to even categorize him as hearing impaired,

why would they pay for an evaluation at a place like e? BTW, my son is

bilateral moderate-to-severe SN loss, with hearing aids.

So I would be interested in knowing the strategies to get a school district

to pay. I just assumed I would have to pay. I think if I get the referral

from Sloan-Kettering, my insurance will pay. That is what happened with

another friend whose child was treated at Sloan - her school district

wouldn't pay for the neuropsych evals at Rusk, but her insurance would pay.

Also, my son had educational, speech, and physical evals done 2 years ago.

But it wasn't done at a place that specializes in hearing impaired kids,

and at the time it was done, we didn't know yet the extent of his hearing

loss. Will that make a difference?

thanks,

Bonnie

[Guest guest]

No, they did not pay for Elias's evals. Those were paid for through the

county (early intervention). But my friend's daughters evals were paid for

by her insurance. I think it is because there are official NCI guidelines

for pediatric cancer survivors which call for neuropsych evaluations after

chemo or radiation. Or maybe Sloan is just really good at twisting insurance

companies arms.

>

> Why did your insurance company pay for the eval? I wonder if ours would

> if

> Yale said it had to be done. I have to look into this.

>

> Trish

> Visit Trish and Bobby's Marathon website at

> http://www.firstgiving.com/bobbymarathon

>

>

>

>

[Guest guest]

In a message dated 9/13/2006 2:39:38 P.M. Eastern Standard Time,

bkmackellar@... writes:

Also, the claim that " hearing loss is not educationally significant " - that

is what our district says too. I really don't understand that one. They

think his delayed social development is educationally significant - so he

gets SEIT services - but the hearing loss isn't, so he can't have a TOD. To

me, the ability to hear and understand speech would seem to be far more

important and basic in an educational setting than the ability to get along

with peers!

Bonnie

Bonnie,

To put it bluntly, this claim is BS and they used it on us to try and get us

to accept only SpecEd services and not force them to bring in a TOD or the Fm

system, or anything else they didn't have on staff. They wanted to offer us

what they could without incurring any additional costs.

When I finally got the personal FM system put into his IEP, somehow the word

" personal " disappeared form the final version of his IEP. (Hmmm, doesn't

sound legal you say? No, it wasn't legal, and NYState was not at all pleased

when the two versions were sent to them.)

They claimed the lack for that key word meant they could give Ian a

soundfield system, which they cobbled together from extras piece from the AV

department, including a microphone that looked like something used by an old

game

show host.

Like I said, ours is not the usual experience, it's one of the worst.

So, don't accept their assertion that his hearing loss isn't educationally

significant or shouldn't be included in the IEP. It is and it should.

Best -- Jill

[Guest guest]

Hi again Bonnie, Well, that sheds some light on the subject. I'm thinking that

you really want the evaluation so that both you and the school system will know

what he needs and how to handle what he needs. So really you are asking them to

DO the evaluation. So I think that is where you need to start. Talk to the

various outlets for an eval (universities are good too, I saw that someone

suggested that) and decide who you want to do the eval. Then see if you can get

it done without getting the school system to pay for it. Then at least you know.

And hopefully they will use the eval and incorporate it into the IEP. We really

needed to know so we would know what she needed and then we'd worry about if

we'd fight the school system to get it or just pay for it ourselves. I was like

you, a pediatric nurse so I wasn't a dummy, but I didn't know squat about

education, especially special education. I knew I needed a firm " diagnosis "

before I'd understand what the treatment was. I definitely did NOT get a firm

diagnosis from my school system nor were they very cognizant of what treatment

should be. Our first IEP went like " Lets Make a Deal " - I knew something was

wrong with that scenario! But I still didn't know what Maggie really needed.

So right now you could ask them for a comprehensive educational evaluation using

standardized tools and people with specialization, training and experience in

evaluating and educating children with hearing loss. Then if they can't or

won't do this, decide if you want to pay for it yourself or go the route of

requesting an IEE. For what he needs, keep it at a parent level. Don't get

trapped into saying what exact test he needs. Say he needs a comprehensive eval

done by people who specialize with children with hearing loss. This would

include psychoeducational exam (IQ), listening, language, speech, general

cognitive knowledge, pre-reading and pre-math. They may also do oral motor, PT

and OT type stuff depending on the place. Also he should be observed in a

classroom by someone who understands hearing impairment to see what exactly his

issues are in a practical way. Yes, IQ tests aren't terribly predictive in a

child of 4 but they can be used if they are to your advantage if they are

administered by some one who knows hearing loss.

I guess what I am trying to say is that you need to decide if you want to work

toward the school doing this or if you just want to proceed with you/insurance

paying for it. To be honest, I wish we hadn't wasted our time fighting our

school system but you probably don't live in a district where 30% of ALL the

kids are in private school. It would have been a lot less hassle to just pay

for it ourselves. But that is hindsight.

Re: Re: anyone know about Rusk Institute at NYU?

>

>One of the problems I have is knowing what kinds of evaluations SHOULD be

>done, and what they are called. I don't have a background in education, so

>it is very confusing and puts me at a disadvantage with respect to the

>school system. I've read a couple of books on kids with hearing loss, but

>they don't seem to really say in detail what a child needs in terms of

>evaluations -they focus more on types of hearing aids and FM systems (which

>is useful too).

>

>First, I thought IQ tests weren't valid with small kids? My son is 4. I

>distinctly remember reading that on a site for gifted kids (yes, I have that

>battle too, with my older son).

>

>My son was evaluated two years ago, when he went from Early Intervention to

>preschool special ed. It was done at Blythedale Children's Hospital, which

>is a rehab hospital. He was almost 3 at the time. He had a kind of

>intelligence test done, but I don't know what it was called. He measured on

>target on that test. He also was evaluated for gross motor skills, fine

>motor skills, and speech, and was significantly delayed in all those areas.

>That set of evaluations has formed the basis for all his services since. At

>the time, we did not know he needed hearing aids although we knew he was

>high risk for hearing loss.

>

>His current evaluations were quickies done by his therapists (I saw them

>done, I know). They are strictly observational. I don't disagree with them

>at all - there is no question he is delayed in his gross and fine motor

>skills, and in speech. I simply want more information, done in the light of

>his now-known hearing loss, and I want support for classifcation as hearing

>impaired, and for including services appropriate to a hearing impaired child

>on his IEP. So I don't want to go the route of officially disagreeing with

>the current evaluations, because I don't.

>

>How do I request that the school district pay for the evaluation? Do I do it

>in writing? Are there specific terms I need to use? BTW, I've visited the

>slaw site, but I have a lot of trouble finding what I need on that

>site. Nothing seems to ever be pertinent to my situation, and I have trouble

>with the terminology. We had an issue this summer when Elias lost his PT

>services due to a therapist suddenly quitting - the school district could

>not find a new therapist quickly who could meet his complicated schedule so

>he lost all his PT services. I could not find anything on slaw or

>elsewhere that addressed that kind of problem (losing services due to

>scheduling problems).

>

>Sigh. This is a fulltime job, it seems. I'm also trying to deal with my

>older kid's problems (total boredom in first grade because his skills are

>way ahead of what they teach). Sometimes I worry that Elias may turn out to

>be a 2E kid, which will be even dicier I am sure. Elias, like his brother,

>has a lot of very advanced skills, but that speech delay and his fine motor

>problems make it seem like he is behind.

>

>thanks for all the help here!

>Bonnie

>

>

>>

>>

>> Re the neuropsych evals. The first and bedrock piece of a

>> psych/educational eval is the IQ test. There is a verbal and a non-verbal

>> component and these are usually averaged for a composite IQ score. But with

>> hearing impaired kids, the verbal IQ section DOES NOT measure verbal IQ, it

>> measures what they have been taught. And it is often much lower than the

>> non-verbal. 15 points or more is educationally significant in most states,

>> it is 1 SD below the mean. That is a measurement that can be used in most

>> states to show that the child has an educationally significant hearing loss.

>> But if the evaluator doesn't know this, then they may say, gee your son has

>> an incredibly low verbal IQ, you need to lower your expectations in those

>> areas. When the opposite is true - the child just hasn't had the correct

>> education to try to fix the gap.

>>

>> A great place to understand all this evaluation stuff is the

>> slaw.com website.

>>

>>

>

>

>

[Guest guest]

No! Skipping a grade (aka " whole grade acceleration " ) is " against district

policy " .

The schools down here in southern Westchester are all either disaster areas

(think Mount Vernon or Yonkers) or they are powerhouses competing to make

the US News and World Reports " top 100 high school " rankings. Our district

falls into the latter category. They have this attitude - " we know

everything about education because we are the best " . They are test-taking

machines. What that means, though, is that children who fall outside of

their norm (which is a very high norm) just fall through the cracks.

Unfortunately, that includes both my kids.

My older son is your model " gifted student " . He was very verbal early on,

and taught himself to read when he was 4. But he didn't have to contend with

chemo or hospitalization or hearing loss! Elias was developing along the

same trajectory when he got sick. I feel like he has so much stacked against

him, and yet, he still shows signs of that same intelligence. When he was

2, he managed to teach himself all the letters of the alphabet - while he

was doing chemo. The playroom at clinic had the whole series of Sesame

Street alphabet books, and he liked to stare at them intently (he spent most

of his chemo days staring at picture books). One day he said " get M " and

went over to the shelf and got the M book. Then he said " get S " and pulled

the same trick. I started asking him which letter was which, and i quickly

realized he knew all the names of the letters. Of course, now at age 4. he

is still struggling to associate the proper sounds with those letters. So

there are huge discrepancies in his development. I've heard this referred to

as " twice exceptional " , and I fear this may be the case.

Also, the claim that " hearing loss is not educationally significant " - that

is what our district says too. I really don't understand that one. They

think his delayed social development is educationally significant - so he

gets SEIT services - but the hearing loss isn't, so he can't have a TOD. To

me, the ability to hear and understand speech would seem to be far more

important and basic in an educational setting than the ability to get along

with peers!

Bonnie

>

>

> If they won't address his academically advanced needs, will they consider

> skipping him up a grade?

>

[Guest guest]

Bonnie,

My son goes to private school so we are and are not part of the

" system " . As I understand it, any student who has a potential learning

problem is entitled to IEP meetings and then the appropriate evaluation

that will deal with that disability. If the school district cannot

provide the appropriate evaluation for a specific disability, they have

to pay for one that is. So, unless they can evaluate kids with a

hearing loss, they have to pay for someone else to do so. This is law.

The next step, the provision and payment for services, is, I believe a

bit more open to interpretation, and where you may have to fight.

Re: Re: anyone know about Rusk Institute at NYU?

What did you do to convince the school district to pay? Our

school district

isn't taking the hearing loss seriously (they see him as

developmentally

delayed due to treatment), so I want to use the evaluation to help

convince

them to pay attention to the hearing loss. But if they aren't taking

the

hearing loss seriously enough to even categorize him as hearing

impaired,

why would they pay for an evaluation at a place like e? BTW, my

son is

bilateral moderate-to-severe SN loss, with hearing aids.

So I would be interested in knowing the strategies to get a school

district

to pay. I just assumed I would have to pay. I think if I get the

referral

from Sloan-Kettering, my insurance will pay. That is what happened with

another friend whose child was treated at Sloan - her school district

wouldn't pay for the neuropsych evals at Rusk, but her insurance would

pay.

Also, my son had educational, speech, and physical evals done 2 years

ago.

But it wasn't done at a place that specializes in hearing impaired

kids,

and at the time it was done, we didn't know yet the extent of his

hearing

loss. Will that make a difference?

thanks,

Bonnie

>

> My older son, Tom, was evaluated at e in Northampton MA when he

was

>

> in first grade. We didn't need a referral and our school district

paid

> for it. At least at the time Tom had his CEE (comprehensive education

> evaluation) done, they did do a psych eval, in addition to audiology,

> educational, speech/language - it was very comprehensive and gave us

the

> answers we needed. I can't say enough about it - it was excellent.

And

> the report that they generate was fabulous - soup to nuts...

>

> Barbara

>

>

> casey cat wrote:

> > is right - I had my son Gabe evaluated at the League for

the Hard

> of

> > Hearing in Manhattan. They are expert and have years of history

working

> only

> > with children with hearing loss, fitting hearing aids, they have an

> > auditory-oral program and do full speech, language, and

psychological

> > evaluations. I know that one of the children there right now for

therapy

> was

> > also referred from Sloan Kettering. I'm sure they can help you. I'm

> pretty

> > certain that Rusk doesn't really work with children with hearing

loss at

> all

> > (and I don't think that e does psychological evaluations but

I'm

> not

> > sure). Their main phone number is .

> >

> >

> >

> >

>

>

>

--

Bonnie

[Guest guest]

Our district is like that too but they do do a good job of meeting kids

to keep them stimulated.

Our school actually proposed to ME Tom's testing at e - they knew

they couldn't handle it - so we were very lucky.

Bonnie MacKellar wrote:

> No! Skipping a grade (aka " whole grade acceleration " ) is " against district

> policy " .

>

> The schools down here in southern Westchester are all either disaster areas

> (think Mount Vernon or Yonkers) or they are powerhouses competing to make

> the US News and World Reports " top 100 high school " rankings. Our district

> falls into the latter category. They have this attitude - " we know

> everything about education because we are the best " . They are test-taking

> machines. What that means, though, is that children who fall outside of

> their norm (which is a very high norm) just fall through the cracks.

> Unfortunately, that includes both my kids.

>

> My older son is your model " gifted student " . He was very verbal early on,

> and taught himself to read when he was 4. But he didn't have to contend with

> chemo or hospitalization or hearing loss! Elias was developing along the

> same trajectory when he got sick. I feel like he has so much stacked against

> him, and yet, he still shows signs of that same intelligence. When he was

> 2, he managed to teach himself all the letters of the alphabet - while he

> was doing chemo. The playroom at clinic had the whole series of Sesame

> Street alphabet books, and he liked to stare at them intently (he spent most

> of his chemo days staring at picture books). One day he said " get M " and

> went over to the shelf and got the M book. Then he said " get S " and pulled

> the same trick. I started asking him which letter was which, and i quickly

> realized he knew all the names of the letters. Of course, now at age 4. he

> is still struggling to associate the proper sounds with those letters. So

> there are huge discrepancies in his development. I've heard this referred to

> as " twice exceptional " , and I fear this may be the case.

>

> Also, the claim that " hearing loss is not educationally significant " - that

> is what our district says too. I really don't understand that one. They

> think his delayed social development is educationally significant - so he

> gets SEIT services - but the hearing loss isn't, so he can't have a TOD. To

> me, the ability to hear and understand speech would seem to be far more

> important and basic in an educational setting than the ability to get along

> with peers!

>

> Bonnie

>

>

>

>> If they won't address his academically advanced needs, will they consider

>> skipping him up a grade?

>>

>>

>

>

>

[Guest guest]

Also, the claim that " hearing loss is not educationally significant "

- that

> is what our district says too. I really don't understand that one. They

> think his delayed social development is educationally significant - so he

> gets SEIT services - but the hearing loss isn't, so he can't have a

TOD. To

> me, the ability to hear and understand speech would seem to be far more

> important and basic in an educational setting than the ability to get along

> with peers!

>

> Bonnie

>

How can they say this when they haven't evaluated him adequately to determine

this???

[Guest guest]

I'm actually not sure if it was neuroblastoma or not, I think it may have

been. Happily she's healthy now. I know that the League has seen lots of

kids that the school district has paid for and that they can help you get it

too; they'll help make the case for you. I don't know if you live in NYC but

I know that they are an evaluation site for the board of education so if you

do live in the city, it might be easier than you think. If you call there,

ask for the Communications Department and there they can help you figure out

what you need.