RE: Venting about SSI: You wont believe this one!

[Guest guest]

Carol... oh my gosh.. your footnote...that he sometimes tells people his mom

died in a plane crash...I kind of smiled for a second, understanding how

kids, even though he's in a mans body, think, and the off the wall things

they'll say about their parents... but then I felt such a twinge of pain for

you... how sad!!

~~ANGEL~~

Mom to:

, 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 12, 9,

Jaeda 8 and Shayne 2

[Guest guest]

I've filled out SSI forms as a teacher before, and I don't recall a question

like that being asked. That is ludicrous! I get this same type of reaction

from some (not most, mind you, just some) regular ed teachers in regard to

students with learning disabilities or behavior disorders. I can't seem to

get the point across that a child does not have to have FLK syndrome (you

know, funny-looking kid syndrome) to have a disability and need services.

I'm not trying to be offensive. That's just the way people think.

A.

_____

From: Kristy Colvin

Sent: Thursday, November 04, 2004 1:56 PM

To: mosaicds

Subject: Venting about SSI: You wont believe this one!

Hi everyone,

Yesterday, I had a phone appointment with SSI. Tim has been on SSI since he

was 3. Now that he is 18, he has to be re-evaluated. As some of you know, a

couple of years ago, the Social Security Administration decided that

although a person with Ds automatically qualifies for SSI, a person with MDS

would qualify only to the descression of the Administration.

During my phone conversation with this woman, one of the questions she asked

me was, " Does your son look like other 18 yr old boys? " Knowing where she

was going with that, I asked her, " What do you mean? " She said, " Well, does

he look like the other boys? " I said, " Well, he has Down syndrome! " (LOL not

something I usually say but in this circumstance it was necessary!) Then she

tried to go to the next question and I said, " Wait a minute...What does it

matter what my son LOOKS like? " She then said, " OH....well...I meant does he

walk with a walker or anything like that? " I said, " That is a physical

handicap and would have nothing to do with his appearance! " She didn't say

anything and went on to the next question.

The more I think about this the madder I get! Is SSI judging children on the

physical phenotype? In a recent speech I gave at a Buddy Walk, and this

seems like this speech will continue to others, I have been trying to get

the message across that you can not judge a person's mental capabilities by

their physical appearance. MANY people believe that if the person with MDS

does not have all the physical characteristics as one with Ds then they are

not effected by the extra chromosome cells! To you and I, this is crazy

thinking! But, to the rest of the world, it makes sense! One parent of a

child with Ds argued this point with me. I told her I have dyslexia....but

you can not tell that by looking at me!!!!! (my check book maybe but not me!

LOL)

I may very well ask to look at the questions they are asking from the

computer screen at the SSA office. If that question is physically on there,

and I have no reason to believe that it isn't because she was reading and

typing as we spoke, then that is going to have to change!!!!!!!

ok I am through venting...I need to get back to work!

Kristy

[Guest guest]

Kristi, what do you mean by " Tim has been on SSI " since he was 3. What exactly

is SSI - I know it has something to do with Social Security - but I have never

checked into getting any kind of benefits for Katy - she is 13 now. I was under

the impression that they had to be 18 or more. Sorry, I am very uninformed on

this issue. Hope you don't mind me asking.

Thanks, Charlotte

Venting about SSI: You wont believe this one!

Hi everyone,

Yesterday, I had a phone appointment with SSI. Tim has been on SSI since he

was 3. Now that he is 18, he has to be re-evaluated. As some of you know, a

couple of years ago, the Social Security Administration decided that although a

person with Ds automatically qualifies for SSI, a person with MDS would qualify

only to the descression of the Administration.

During my phone conversation with this woman, one of the questions she asked

me was, " Does your son look like other 18 yr old boys? " Knowing where she was

going with that, I asked her, " What do you mean? " She said, " Well, does he look

like the other boys? " I said, " Well, he has Down syndrome! " (LOL not something I

usually say but in this circumstance it was necessary!) Then she tried to go to

the next question and I said, " Wait a minute...What does it matter what my son

LOOKS like? " She then said, " OH....well...I meant does he walk with a walker or

anything like that? " I said, " That is a physical handicap and would have nothing

to do with his appearance! " She didn't say anything and went on to the next

question.

The more I think about this the madder I get! Is SSI judging children on the

physical phenotype? In a recent speech I gave at a Buddy Walk, and this seems

like this speech will continue to others, I have been trying to get the message

across that you can not judge a person's mental capabilities by their physical

appearance. MANY people believe that if the person with MDS does not have all

the physical characteristics as one with Ds then they are not effected by the

extra chromosome cells! To you and I, this is crazy thinking! But, to the rest

of the world, it makes sense! One parent of a child with Ds argued this point

with me. I told her I have dyslexia....but you can not tell that by looking at

me!!!!! (my check book maybe but not me! LOL)

I may very well ask to look at the questions they are asking from the computer

screen at the SSA office. If that question is physically on there, and I have no

reason to believe that it isn't because she was reading and typing as we spoke,

then that is going to have to change!!!!!!!

ok I am through venting...I need to get back to work!

Kristy

[Guest guest]

Don't forget there are also household income limits as well. I asked about

SSI for my Deaf daughter and they told me I made too much money for her to

qualify. In order for her to qualify, our family of three would have to

have a total annual household income of less than $28,000.

Re: Venting about SSI: You wont believe this one!

Kristi, what do you mean by " Tim has been on SSI " since he was 3. What

exactly is SSI - I know it has something to do with Social Security -

but I have never checked into getting any kind of benefits for Katy -

she is 13 now. I was under the impression that they had to be 18 or

more. Sorry, I am very uninformed on this issue. Hope you don't mind

me asking.

Thanks, Charlotte

Venting about SSI: You wont believe this one!

Hi everyone,

Yesterday, I had a phone appointment with SSI. Tim has been on SSI

since he was 3. Now that he is 18, he has to be re-evaluated. As some of

you know, a couple of years ago, the Social Security Administration

decided that although a person with Ds automatically qualifies for SSI,

a person with MDS would qualify only to the descression of the

Administration.

During my phone conversation with this woman, one of the questions she

asked me was, " Does your son look like other 18 yr old boys? " Knowing

where she was going with that, I asked her, " What do you mean? " She

said, " Well, does he look like the other boys? " I said, " Well, he has

Down syndrome! " (LOL not something I usually say but in this

circumstance it was necessary!) Then she tried to go to the next

question and I said, " Wait a minute...What does it matter what my son

LOOKS like? " She then said, " OH....well...I meant does he walk with a

walker or anything like that? " I said, " That is a physical handicap and

would have nothing to do with his appearance! " She didn't say anything

and went on to the next question.

The more I think about this the madder I get! Is SSI judging children

on the physical phenotype? In a recent speech I gave at a Buddy Walk,

and this seems like this speech will continue to others, I have been

trying to get the message across that you can not judge a person's

mental capabilities by their physical appearance. MANY people believe

that if the person with MDS does not have all the physical

characteristics as one with Ds then they are not effected by the extra

chromosome cells! To you and I, this is crazy thinking! But, to the rest

of the world, it makes sense! One parent of a child with Ds argued this

point with me. I told her I have dyslexia....but you can not tell that

by looking at me!!!!! (my check book maybe but not me! LOL)

I may very well ask to look at the questions they are asking from the

computer screen at the SSA office. If that question is physically on

there, and I have no reason to believe that it isn't because she was

reading and typing as we spoke, then that is going to have to

change!!!!!!!

ok I am through venting...I need to get back to work!

Kristy