Re: Re: Does diagnosis make a difference

[Guest guest]

In a message dated 8/29/99 9:18:49 PM, Nekotek@... wrote:

<<I want her to do well on the evals, yet I know if she does very well she

will

no longer qualify for services.>>

<< On one hand its good that my school district does not

automatically assume that because has down syndrome she will not be

able to be successful in regular education. On the other hand I don't want

her to fall through the cracks because she was not given the proper supports.

>>

ann, Marie and everyone else struggling with this,

What a difficult situation to be in. I think the question that everyone

involved in a child's education needs to ask is " would this child continue to

progress at a reasonable pace and succeed if the intervention stopped? "

Unfortunately, school districts often wait until a child is considerably far

behind his peers before they will approve services. This happens with first

graders that I work with (although I'm the art teacher, not their classroom

teacher.) Anyway, a kid might be struggling but isn't far enough behind to

qualify for LD services, or their IQ is too low for LD and too high for CD

(cognitively disabled.) So a child either doesn't receive services at all,

or has to wait until they fall farther and farther behind. As parents we

obviously don't want our child to be in either of these situations.

Sometimes a student who is in the LD program may be released from services

after they have learned strategies for compensating for their learning

disablity. I think the issues may be different for children with DS because

of the diagnosis.

Hopefully a school district would look at all the issues when determining the

needs of a particular child.

For , while having DS may have helped to get services initially when she

was 3, her delays now have become more apparent. And although she is doing

quite well and we are thrilled with her progress, I think that if she were

tested right now she'd qualify for services. So I don't think this will

become an issue for us. But who knows, its quite a ride...

Good luck!

Sue

[Guest guest]

ann,

What a wonderful post. Your thoughts are mine exactly. I could have

written (but not so well) the same things you are wrote. I have a very

difficult time when it comes to testing. I want to excel, but I worry

if she does toooo good, they will take away the services that have gotten

her there!.....And that is what I think tomorrow's meeting is about. I

really think they will tell me the only service she will qualify for is

speech, if that....But like you, I always go with dooms day in my heart, and

come back with what we really think needed. It really is fun to have

others to type too that understand completely.

Marie (Mom to 6 MDS and her 9 year old sister)

Re: Does diagnosis make a difference

>From: Nekotek@...

>

>In a message dated 8/29/99 1:52:19 PM Eastern Daylight Time,

>mmurrell@... writes:

>

><< Why does the diagnosis make a difference? I was told (by the school),

that

> children do not receive services because of any particular diagnosis, but

> rather on an individual basis, because of current specific needs. >>

>

>Hi Marie:

>

>In theory the diagnosis really should not make a difference. Children are

>tested and if they have a certain percentage of delay, or a combination of

>delays in two or more areas, depending on the what criteria is used by your

>school district, they will either qualify for services or not. However,

from

>my experience, our school district gave my daughter services even

>though she really did not have a 33% delay or combination of delays. It

took

>a lot of convincing and at this point she is holding on to these services

by

>a thread, but I think it was because of the diagnosis of down syndrome

which

>does put her at increased risk for delays that helped to qualify her. She

is

>going to be re-evaluated in the fall with a psychological and educational

>eval as well as speech and I really do not know what will happen then. I

>want her to do well on the evals, yet I know if she does very well she will

>no longer qualify for services. She is only getting speech and

counselling.

>We had to forego OT, and PT last year because they were not affecting her

>academic performance in the classroom. I didn't even ask for her to be

>evaluated in these areas because I knew she would not qualify. It's really

>the speech I'd like her to keep because in spite of her test scores I see

>where she has difficulty. So far she has not needed, nor would she have

>qualified for resource room. On the other hand, the school district has to

>justify why a child who is not exhibiting the requisite percentage of delay

>is getting services.

>

>I don't know if the way your child is classified makes a difference. I

would

>think that children who are classified mentally retarded or learning

disabled

>would probably have an easier time getting services or might be considered

>for more services than someone who is classified speech delayed. Right now

> is classified " Speech Impaired " . However, at her last CSE the

>special ed director told me she felt it was a real stretch to classify her

>speech impaired. What do you do if your district doesn't feel your child

>needs services anymore, but you still feel she would benefit?

>

>I would try to use down syndrome as a last ditch effort when it looks like

>they are going to cut her off. You might want to put it in your pocket as

a

>trump card and only play it if it becomes necessary. Of course, seeking

due

>process has also done wonders for parents in getting services for their

>children. On one hand its good that my school district does not

>automatically assume that because has down syndrome she will not

be

>able to be successful in regular education. On the other hand I don't want

>her to fall through the cracks because she was not given the proper

supports.

> I guess that's why I cringe whenever I have a committee meeting. Every

time

>I walk away with the services I wanted for her I feel lucky.

>

>I've rambled on enough.

>

>ann (Mom to MDS, 6 yrs old and 9 yrs old)

>

>

>---------------------------

[Guest guest]

In a message dated 8/30/99 8:57:05 AM Eastern Daylight Time,

njboxers@... writes:

<< Isn't it possible just to keep the services that

she needs to continue to excel? >>

Hi Bree:

That it what I had hoped my school district would do. Since has

had interventions since she was 2 months old and has always done well we

don't know if it was just her ability or the interventions. Probably a

combination of both. However, the school district will only provide services

if there is a certain percentage of delay. Without the delay they feel the

child is age appropriate and therefore no longer needs the service. They are

very fast to take services away if they child no longer qualifies. It would

be nice to think they would continue the service just to ensure the child

continues to progress but very often that is not the school districts

philosophy. When started kindergarten last year I held my breath

as I watch OT, PT and her special education teacher being taken away. The

only service she kept was speech and that was minimally. But...I have to say

she has done quite well without these services. Now I am waiting to see what

will happen in first grade as the curriculum becomes more challenging. I

always felt more comfortable with her getting the services because I felt she

would not regress and if she had any difficulty it would be addressed right

away. Now I realize it is a good thing the services were cut back so much so

we can see where her abilities and weaknesses really are. It's just very

hard for me to take a wait and see approach. As I said, my district will

take services away in the blink of an eye, but it is much harder to get them

approved again. I've always had to make a good case for to

continue interventions and I had a lot of help from the school she went to.

Parents have a lot of weight in the decision making process, but you have to

stand your ground and sometimes it can be very intimidating.

ann (Mom to MDS, almost 6 yrs and 9 yrs)

[Guest guest]

<<-----Original Message-----From: M. L. Murrell

I want to excel, but I worry if she does toooo good, they will take

away the services that have gotten her there!..... >>

Marie,

Since I'm really new to all of this, I hope my question won't sound stupid,

but if (or any other child) excels in certain areas, that's an obvious

plus and milestone, right? Isn't it possible just to keep the services that

she needs to continue to excel?

Bree

Mommy to (MDS), born July 17th, 1999, 2 sons (ages 11 & 9) and a

step-daughter (9).

[Guest guest]

Dear Bree,

No question is a stupid question in my eyes!.. .ann has already done an

excellent job of answering your questions. The services we are talking

about are the school funded services such as Speech Therapy, OT,and PT. We

already pay for one speech session out of our own pocket because the doctor

and the private therapist think needs speech three times a week, but

the SCHOOL thinks that two times a week is enough. The school will only

provide (with out a big fight) what they have funding for, staffing for, and

room for. It addition, the school will only provide services that are

" academically " based...for example, if can walk stairs, and move

around the classroom enough to not hinder her academics, then PT could

become at risk....This is their basis for only two speech lessons...(not to

mention the fact that their therapists are way overloaded....so much so,

that it becomes almost impossible for ANY child to get three ST a week).

It is very difficult to know that your child is performing at near age

appropriate levels, and therefore the school sees no need to continue the

services that (I think) got her there. Once a child no longer shows

significant delays they can (and will in many cases) take the services

away, because in their eyes, the child no longer needs the extra help.

We can of course continue the services through private therapists and

private funds, but as you know, this would be, many times, cost prohibitive.

I hope between ann and I, we have answered your questions. And

remember, you will not be faced with this horrible delima until you child is

age 3 (and then once every three years in my state) and needs to be

re-tested to find a " qualifier " for the special services.

Marie

>Since I'm really new to all of this, I hope my question won't sound

stupid,

>but if (or any other child) excels in certain areas, that's an

obvious

>plus and milestone, right? Isn't it possible just to keep the services

that

>she needs to continue to excel?

>

>Bree

>Mommy to (MDS), born July 17th, 1999, 2 sons (ages 11 & 9) and a

>step-daughter (9).

[Guest guest]

In a message dated 8/30/99 1:48:00 PM, mmurrell@... wrote:

<<

We can of course continue the services through private therapists and

private funds, but as you know, this would be, many times, cost prohibitive.

>>

Hi,

Here in Wisconsin there is a kind of medical assistance under what is called

the Becket Program. I should know if this is state or federal but I

don't remember. Anyway, this medical assistance is based on need (chronic

illness or disability) rather than income. When was born we didn't

apply at first because I couldn't foresee any need for it, after all we have

excellent health insurance. But it has helped enable us to seek out extra

therapies which, like someone said, can become quite costly. It has covered

whatever our insurance company won't. It has also helped cover that cost of

's glasses and will cover diapers after a child turns four.

Unfortunatley I see no end to diapers in our house, but that's another topic.

Sue (Norah 11yrs., 6 yrs MDS & ADHD)

[Guest guest]

This sounds like a wonderful resource. I have looked high and low in

Oklahoma for services outside of the school funded services. As of yet, I

have not been able to find even one that was not based on financial need.

I will not give up hope.....with your post, I know that there may still be a

pebble unturned somewhere!

We do not qualify, (you must be at practically poverty level!). Our income

level is such that we have to pay for anything that is not school funded.

We do have insurance, but even the 20% co-pay adds up VERY quickly. We are

kind of right in the middle....we do not qualify for (financial needy)

services, and we do not really have enough to pay for ALL the services we

would like to get for . We just pay for one speech therapy right now,

and the school has picked up her O.T., P.T. and two of her speeches. I

would very much like to see have another O.T., as pre-first has proven

to be quite a challenge in getting those letters JUST right!

Marie

>Here in Wisconsin there is a kind of medical assistance under what is

called

>the Becket Program. I should know if this is state or federal but I

>don't remember. Anyway, this medical assistance is based on need (chronic

>illness or disability) rather than income.

[Guest guest]

I thought I would mention that after was diagnosed with

Microcephaly and MDS we were referred to the Kansas City Regional

Center..Department of Mental Health. Here they tested elizabeth once

again and said she quilified for services with them. was

assigned a Case Worker (she is a god send) They made sure that elizabeth

got enrolled in the First steps program and recieved pt and speech

during the summer.

After turned 3 the case worker helped with dealing with the

school system and even did the iep with me. Then she came to the first

iep meeting and told them this was the iep that would be used..that they

could include things but the main goals would stand. (these were things

that her and I had talked about for elizabeth). They paid for the

speech and pt. They pay for services that elizabeth needs that she

recieves through them. They have also helped with things with a stipend

and respite care.

I would recommend this program with flying colors if anyone in the list

can find one in their area.

Marie,

ICQ#5647976

Mom to 13 (PDDNOS & ADHD), Stevie 7 (PDDNOS & Severe ADHD),

6 and 4 (Microcephaly & Mosaic Down's)

" M. L. Murrell " wrote:

>

>

>

> This sounds like a wonderful resource. I have looked high and low in

> Oklahoma for services outside of the school funded services. As of yet, I

> have not been able to find even one that was not based on financial need.

> I will not give up hope.....with your post, I know that there may still be a

> pebble unturned somewhere!

> We do not qualify, (you must be at practically poverty level!). Our income

> level is such that we have to pay for anything that is not school funded.

> We do have insurance, but even the 20% co-pay adds up VERY quickly. We are

> kind of right in the middle....we do not qualify for (financial needy)

> services, and we do not really have enough to pay for ALL the services we

> would like to get for . We just pay for one speech therapy right now,

> and the school has picked up her O.T., P.T. and two of her speeches. I

> would very much like to see have another O.T., as pre-first has proven

> to be quite a challenge in getting those letters JUST right!

>

> Marie

>

> >Here in Wisconsin there is a kind of medical assistance under what is

> called

> >the Becket Program. I should know if this is state or federal but I

> >don't remember. Anyway, this medical assistance is based on need (chronic

> >illness or disability) rather than income.

>

> ---------------------------

[Guest guest]

Sue,

Where in Wisconsin are you? I am also in WI, near the West Bend area. We

also dismissed the Beckett program. Birth to three covered all of or

therepy so far, and Mahrya has no real health issues to speack of. I'd like

to hear more about the program. Do you know if the will cover therepy if we

should decide on a parochial school and not use the public? I'd love to

hear more about it.

Luanne

mom to Mahrya 35mo. mds, Ben 4, Alan 11, Sandy 13, Steve 15, Dan 16

> >>

>

>Hi,

>Here in Wisconsin there is a kind of medical assistance under what is

>called

>the Becket Program.

>

[Guest guest]

In a message dated 8/29/99 11:18:12 PM Eastern Daylight Time,

SCarMGar@... writes:

<< Unfortunately, school districts often wait until a child is considerably

far

behind his peers before they will approve services. This happens with first

graders that I work with (although I'm the art teacher, not their classroom

teacher.) Anyway, a kid might be struggling but isn't far enough behind to

qualify for LD services, or their IQ is too low for LD and too high for CD

(cognitively disabled.) So a child either doesn't receive services at all,

or has to wait until they fall farther and farther behind. As parents we

obviously don't want our child to be in either of these situations. >>

Hi Sue

The situation you describe is exactly what I am trying to avoid. It is my

greatest fear that will do well enough not to qualify for services

but always be the child that is struggling to get by. I also want to make

sure she is really learning everything not just having things go over her

head. What is the sense in being in a regular ed classroom if she is not

really grasping what is being taught? Right now I'm in a holding pattern, I

guess I have to give her a chance but its so hard to wait and see how she

does. She has to go through the evaluation process again in the fall and

then of course another CSE meeting. I find it very nerve wrecking at times.

It's good to talk to others who have been through the process.

ann (Mom to MDS almost 6 yrs, and 9 yrs)

[Guest guest]

<< -----Original Message-----From: M. L. Murrell

I hope between ann and I, we have answered your questions. >>

Thank you so much Marie AND ann, for taking the time to answer my

questions! I know it will be quite a while before we open this new chapter

in our lives, and it's nice to be prepared mentally for whatever the future

may hold for us and !

You're all so wonderful, and the wealth of information is getting sucked up

like a wet sponge! Thank you all!

Bree

Mommy to (MDS), born July 17th, 1999, 2 sons (ages 11 & 9) and a

step-daughter (9).