RE: SSI Question

December 8, 2006

Sorry Kristy...not there yet...but I do remember a few years back, how they

changed their rules to cut out individuals with MOSAIC down syndrome. Looks

like an uphill battle...good luck!!

~~ANGEL~~

mom to , 13, MDS/HD

Lance 18, Ty 14, 12

Jaeda 10 & Shayne 4

December 8, 2006

Thanks Kristy...the legal guardianship is good info.... if not for this

group, I would never have known until it was too late, that parents have to file

for legal guardianship of their adult children....

Good luck... maybe the strides all of you are making will make it easier for

parents in the future!!

~~ANGEL~~

mom to , 13, MDS/HD

Lance 18, Ty 14, 12

Jaeda 10 & Shayne 4

December 8, 2006

The basis they are really using is his mosaicism. Those with Down Syndrome have

an " automatic eligibility " ; however, those with " Mosaic Down Syndrome " , they

scrutinize more thoroughly and use other criteria. Basically, the SS Adm. thinks

that those with Trisomy 21 have low IQ's and are less able than those with MDS.

It's another label thing that I think is discriminatory. If you have DS, you

have DS; i do not think there should be a difference.

They are doing something similar with my girls. They are sending them for

assessment of their speech and also to some sort of psychologist for APD. I told

them I needed funds to keep taking them to all these doctors and they said they

were sending them. Insurance is not the problem; GAS is. And as far as i know, i

am still responsible for the transportation to get them there. So, i am going to

make them an appointment anyways on my own to avoid them using their people.

Hopefully, they will not go back and redetermine that CH does not need it. I

have not told them (and do not intend to) about his rediagnosis.

Ssuan

To: mosaicds@...: imdsapresident@...: Fri, 8 Dec 2006

05:56:41 -0800Subject: SSI Question

Hi EveryoneI got a question today that I wanted to pass on to you all. If you

have had experiences with getting your 18 yr old SSI, please respond. On the

hind site of this, it is much easier for an 18 yr old to get SSI if he/she

already has it or has at least applied for it in the past. Here is the

question...We are applying for SSI. SSI has reviewed his records (from everyone,

which are extensive) and have determined they do not have enough justification

to warrant an eligibility status at this point based on primarily he has mosaic

DS. I have read the Federal Code of Regulations, the SSI Blue Book, sent

extensive records which indicate he is and will not be capable of self

sufficient financial means. SSI is requiring him to have a congnitive assessment

( at the expense of SSI) to determine his IQ status and whether he is eligible.

Sounds like they plan to base this solely on IQ and not functional daily living

skills. I sent a letter with supporting documentation this morning to the SSI

counselor. Have you had experience or knowledge of an individual with Mosiac DS

in the similar situation as my son and I. I also have legal guardianship. The

director of my DS guild said her experience has been he could be found not

eligible after the IQ test if SSI is using “theirpeople”. We know how this

works. All supporting documentation would justifiy him receiving funds and

sounds like they want to base this solely on IQ. He is scheduled for this exam

on Tue (12/12). thanks for your adviceKristy---------------------------------Any

questions? Get answers on any topic at Yahoo! Answers. Try it now.[Non-text

portions of this message have been removed]

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December 8, 2006

You know, when they first made that change we all kind of celebrated because it

was the first time MDS was ever recognized as a real disorder. Now...as the

years have passed and I have seen so many families struggle to get their

children on SSI, I can see where this change is definately a henderance for so

many.

Angel, I know the struggles you have had with SSI, but before turns 18,

you should begin fighting for it. Also, getting legal guardianship is very

helpful for your cause. Not only does it protect from all that legal red

tape that can happen to him as an adult, but also it will help you to get him

SSI. If you have legal guardianship, then it shows the state that he needs his

family and can not be completely independant.

Just a thought....

Kristy

LDSAngel77@... wrote:

Sorry Kristy...not there yet...but I do remember a few years back, how

they

changed their rules to cut out individuals with MOSAIC down syndrome. Looks

like an uphill battle...good luck!!

~~ANGEL~~

mom to , 13, MDS/HD

Lance 18, Ty 14, 12

Jaeda 10 & Shayne 4

December 8, 2006

" Those with Down Syndrome have an " automatic eligibility " " , my experience

tells me that this is EMPHATICALLY not true. In fact, Ciarra has ben turned down

many times for SSI. As have MANY other kids I know.

December 8, 2006

SSI is based on the parents' income until age 18.

A.

Special Educator

Simon Kenton High School

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS [mailto:MosaicDS ] On

Behalf Of mome23kjnc@...

Sent: Friday, December 08, 2006 1:39 PM

To: MosaicDS

Cc: TenEyck

Subject: RE: SSI Question

" Those with Down Syndrome have an " automatic eligibility " " , my

experience tells me that this is EMPHATICALLY not true. In fact, Ciarra

has ben turned down many times for SSI. As have MANY other kids I know.

December 8, 2006

Of course it all depends on your financial situation. In the SSI " rules " it says

that a person with Down syndrome automatically qualifies BUT this does depend on

your financial situation. A person with MDS has to have a variety of tests

through the SSI doctors to determine if they are disabled enough. Where as a

person with Down syndrome does not have to have these tests.

This is what is stated in the SSI " rules " but it could be that the SSI

officers still go through all the same tests to determine qualification.

Kristy

mome23kjnc@... wrote:

" Those with Down Syndrome have an " automatic eligibility " " , my

experience tells me that this is EMPHATICALLY not true. In fact, Ciarra has ben

turned down many times for SSI. As have MANY other kids I know.

---------------------------------

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December 8, 2006

We qualified under financial, and were disqualified based on Ciarra's

" levels of functional ability " three times. They said she " was not

disabled enough " . In Maine, DS is not an automatic qualifier. We did

qualify for Medicaid, based on income.

RE: SSI Question

Of course it all depends on your financial situation. In the SSI " rules "

it says that a person with Down syndrome automatically qualifies BUT

this does depend on your financial situation. A person with MDS has to

have a variety of tests through the SSI doctors to determine if they are

disabled enough. Where as a person with Down syndrome does not have to

have these tests.

This is what is stated in the SSI " rules " but it could be that the SSI

officers still go through all the same tests to determine qualification.

Kristy

mome23kjnc@adelphia <mailto:mome23kjnc%40adelphia.net> .net wrote:

" Those with Down Syndrome have an " automatic eligibility " " , my

experience tells me that this is EMPHATICALLY not true. In fact, Ciarra

has ben turned down many times for SSI. As have MANY other kids I know.

---------------------------------

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December 8, 2006

That is very interesting . According to the laws (and SSI development

laws are country wide) if you have Down syndrome that is supposed to

automatically qualify you and then they look at the financial end of it.

So....I think that the SS office is jerking your chain (so to speak). But,

since you already suspect that Ciarra has MDS, that is more than likely why they

did not automatically qualify you. Something probably came up that made them

question it.

Kristy

wrote:

We qualified under financial, and were disqualified based on Ciarra's

" levels of functional ability " three times. They said she " was not

disabled enough " . In Maine, DS is not an automatic qualifier. We did

qualify for Medicaid, based on income.

RE: SSI Question

Of course it all depends on your financial situation. In the SSI " rules "

it says that a person with Down syndrome automatically qualifies BUT

this does depend on your financial situation. A person with MDS has to

have a variety of tests through the SSI doctors to determine if they are

disabled enough. Where as a person with Down syndrome does not have to

have these tests.

This is what is stated in the SSI " rules " but it could be that the SSI

officers still go through all the same tests to determine qualification.

Kristy

mome23kjnc@adelphia <mailto:mome23kjnc%40adelphia.net> .net wrote:

" Those with Down Syndrome have an " automatic eligibility " " , my

experience tells me that this is EMPHATICALLY not true. In fact, Ciarra

has ben turned down many times for SSI. As have MANY other kids I know.

---------------------------------

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December 8, 2006

Is there a way to find out if your child will qualify when he is 18 before he

turns 18. This would seem like good information for family financial planning.

thanks

barry

Kristy Colvin wrote:

Of course it all depends on your financial situation. In the SSI

" rules " it says that a person with Down syndrome automatically qualifies BUT

this does depend on your financial situation. A person with MDS has to have a

variety of tests through the SSI doctors to determine if they are disabled

enough. Where as a person with Down syndrome does not have to have these tests.

This is what is stated in the SSI " rules " but it could be that the SSI officers

still go through all the same tests to determine qualification.

Kristy

mome23kjnc@... wrote:

" Those with Down Syndrome have an " automatic eligibility " " , my experience

tells me that this is EMPHATICALLY not true. In fact, Ciarra has ben turned down

many times for SSI. As have MANY other kids I know.

---------------------------------

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December 8, 2006

It seems to me that the real issue lay with us not having chromosomal

analysis done early enough. Ciarra had very few of the physical features

of DS, although she was “clinically diagnosed” at birth. Our Geneticist

warned us against testing too many cells, that she might be classified

mosaic due to her functional levels. Perhaps that is why he resited

having more than 2 cells analyzed? In any event, the paperwork on our

denials very clearly stated that her “level of functionability” was not

affected enough to be dx “disabled”.

10.00 Multiple Body Systems

<http://www.ssa.gov/disability/professionals/bluebook/10.00-MultipleBody

-Adult.htm#10.06 Down syndrome (excluding mosaic Down syndrome)#10.06

Down syndrome (excluding mosaic Down syndrome)>

A. What impairment do we evaluate under this body system?

1. General. We evaluate non-mosaic Down syndrome under this body system.

2. What is Down syndrome? Down syndrome is a condition in which there

are three copies of chromosome 21 within the cells of the body instead

of the normal two copies per cell. The three copies may be separate

(trisomy), or one chromosome 21 copy may be attached to a different

chromosome (translocation). This extra chromosomal material changes the

orderly development of the body and brain. Down;syndrome is

characterized by a complex of physical characteristics, delayed physical

development, and mental retardation. Down syndrome exists in non-mosaic

and mosaic forms.

3. What is non-mosaic Down syndrome?

a. Non-mosaic Down syndrome occurs when you have an extra copy of

chromosome 21 in every cell of your body. At least 98 percent of people

with Down syndrome have this form (which includes either trisomy or

translocation type chromosomal abnormalities). Virtually all cases of

non-mosaic Down syndrome affect the mental, neurological, and skeletal

systems, and they are often accompanied by heart disease, impaired

vision, hearing problems, and other conditions.

b. We evaluate adults with confirmed non-mosaic Down syndrome under

10.06. If you have confirmed non-mosaic Down syndrome, we consider you

disabled from birth.

4. What is mosaic Down syndrome?

a. Mosaic Down syndrome occurs when you have some cells with the normal

two copies of chromosome 21 and some cells with an extra copy of

chromosome 21. When this occurs, there is a mixture of two types of

cells. Mosaic Down syndrome occurs in only 1-2 percent of people with

Down syndrome, and there is a wide range in the level of severity of the

impairment. Mosaic Down syndrome can be profound and disabling, but it

can also be so slight as to be undetected clinically.

b. We evaluate adults with confirmed mosaic Down syndrome under the

listing criteria in any affected body system(s) on an individual case

basis, as described in 10.00C.

B. What documentation do we need to establish that you have non-mosaic

Down syndrome?

1. General. We need documentation from an acceptable medical source, as

defined in §§ 404.1513(a) and 416.913(a), to establish that you have a

medically determinable impairment.

2. Definitive chromosomal analysis. We will find that you have

non-mosaic Down syndrome based on a report from an acceptable medical

source that indicates that you have the impairment and that includes the

actual laboratory report of definitive chromosomal analysis showing that

you have the impairment. Definitive chromosomal analysis means karyotype

analysis. In this case, we do not additionally require a clinical

description of the diagnostic physical features of your impairment.

3. What if we do not have the results of definitive chromosomal

analysis? When we do not have the actual laboratory report of definitive

chromosomal analysis, we need evidence from an acceptable medical source

that includes a clinical description of the diagnostic physical features

of Down syndrome, and that is persuasive that a positive diagnosis has

been confirmed by definitive chromosomal analysis at some time prior to

our evaluation. To be persuasive, the report must state that definitive

chromosomal analysis was conducted and that the results confirmed the

diagnosis. The report must be consistent with other evidence in your

case record; for example, evidence showing your limitations in adaptive

functioning or signs of a mental disorder that can be associated with

non-mosaic Down syndrome, your educational history, or the results of

psychological testing.

C. How do we evaluate other impairments that affect multiple body

systems?

1. Non-mosaic Down syndrome (10.06) is an example of an impairment that

commonly affects multiple body systems and that we consider significant

enough to prevent you from doing any gainful activity. If you have a

different severe impairment(s) that affects multiple body systems, we

must also consider whether your impairment(s) meets the criteria of a

listing in another body system.

2. There are many other impairments that can cause deviation from, or

interruption of, the normal function of the body or interfere with

development; for example, congenital anomalies, chromosomal disorders,

dysmorphic syndromes, metabolic disorders, and perinatal infectious

diseases. In these impairments, the degree of deviation or interruption

may vary widely from individual to individual. Therefore, the resulting

functional limitations and the progression of those limitations also

vary widely. For this reason, we evaluate the specific effects of these

impairments on you under the listing criteria in any affected body

system(s) on an individual case basis. Examples of such impairments

include trisomy X syndrome (XXX syndrome), fragile X syndrome,

phenylketonuria (PKU), caudal regression syndrome, and fetal alcohol

syndrome.

3. If you have a severe medically determinable impairment(s) that does

not meet a listing, we will consider whether your impairment(s)

medically equals a listing. (See §§ 404.1526 and 416.926.) If your

impairment(s) does not meet or medically equal a listing, you may or may

not have the residual functional capacity to engage in substantial

gainful activity. In that situation, we proceed to the fourth and, if

necessary, the fifth step of the sequential evaluation process in §§

404.1520 and 416.920. We use the rules in §§ 404.1594 and 416.994, as

appropriate, when we decide whether you continue to be disabled.

10.01 Category of Impairments, Impairments That Affect Multiple Body

Systems

10.06 Non-mosaic Down syndrome, established as described in 10.00B.

December 8, 2006

If your child qualifies now under the developmental delays and the financial end

of things your child could get SSI now. But, if they only qualify

developmentally now but you make too much money, then you can go back and try to

get it at 18

Kristy

barry hickok wrote:

Is there a way to find out if your child will qualify when he is 18

before he turns 18. This would seem like good information for family financial

planning.

thanks

barry

Kristy Colvin wrote:

Of course it all depends on your financial situation. In the SSI " rules " it says

that a person with Down syndrome automatically qualifies BUT this does depend on

your financial situation. A person with MDS has to have a variety of tests

through the SSI doctors to determine if they are disabled enough. Where as a

person with Down syndrome does not have to have these tests.

This is what is stated in the SSI " rules " but it could be that the SSI officers

still go through all the same tests to determine qualification.

Kristy

mome23kjnc@... wrote:

" Those with Down Syndrome have an " automatic eligibility " " , my experience

tells me that this is EMPHATICALLY not true. In fact, Ciarra has ben turned down

many times for SSI. As have MANY other kids I know.

---------------------------------

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December 8, 2006

http://www.ssa.gov/disability/professionals/greenbook/ce-pediatric.htm

Pediatric -- Multiple Body Systems

In addition to the general guidelines:

Down Syndrome

The history should include evidence that it is of the non-mosaic form.

Testing must demonstrate non-mosaic form. A statement of Down Syndrome

is not sufficient.

December 8, 2006

Social Security laws are " federal " based rather than State-based.

Although they say " DS is an automatic qualifier " ,it is only if the referral is

made from birth.

To: MosaicDS@...: mome23kjnc@...: Fri, 8 Dec 2006

16:08:29 -0500Subject: RE: SSI Question

We qualified under financial, and were disqualified based on Ciarra's " levels of

functional ability " three times. They said she " was notdisabled enough " . In

Maine, DS is not an automatic qualifier. We didqualify for Medicaid, based on

income. -----Original Message-----From: MosaicDS

[mailto:MosaicDS ] OnBehalf Of Kristy ColvinSent: Friday,

December 08, 2006 3:13 PMTo: MosaicDS@...: RE: SSI

QuestionOf course it all depends on your financial situation. In the SSI

" rules " it says that a person with Down syndrome automatically qualifies BUTthis

does depend on your financial situation. A person with MDS has tohave a variety

of tests through the SSI doctors to determine if they aredisabled enough. Where

as a person with Down syndrome does not have tohave these tests. This is what is

stated in the SSI " rules " but it could be that the SSIofficers still go through

all the same tests to determine qualification.Kristymome23kjnc@adelphia

<mailto:mome23kjnc%40adelphia.net> .net wrote: " Those with Down Syndrome have an

" automatic eligibility " " , myexperience tells me that this is EMPHATICALLY

not true. In fact, Ciarrahas ben turned down many times for SSI. As have MANY

other kids I know.---------------------------------Cheap Talk? Check out Yahoo!

Messenger's low PC-to-Phone call rates.[Non-text portions of this message have

been removed]

December 8, 2006

With Social Security, you must play down all of your child's abilities. You

cannot let them know too much or they will disqualify you. For me, I think DS is

DS when being considered for SSI. I think it is contradictory for doctors to

classify all DS as the same, then they turn around and state the opposite when

it comes time to pay up and help these kids. Every individual with DS has

different levels of functioning. Some of us are better at things, while some of

us are more deficient in others things. In my opinion, if DS is going to

considered all the same thing, then all people with any form of DS need to be

treated the same and need to receive services based to help with their specific

need. For my children (actually my whole family including my husband), we have

severe Auditory Processing Disorders. that warrants a need enough for me.

To: MosaicDS@...: mome23kjnc@...: Fri, 8 Dec 2006

16:39:34 -0500Subject: RE: SSI Question

It seems to me that the real issue lay with us not having chromosomalanalysis

done early enough. Ciarra had very few of the physical featuresof DS, although

she was “clinically diagnosed” at birth. Our Geneticistwarned us against testing

too many cells, that she might be classifiedmosaic due to her functional levels.

Perhaps that is why he resitedhaving more than 2 cells analyzed? In any event,

the paperwork on ourdenials very clearly stated that her “level of

functionability” was notaffected enough to be dx “disabled”. 10.00 Multiple Body

Systems<http://www.ssa.gov/disability/professionals/bluebook/10.00-MultipleBody-\

Adult.htm#10.06 Down syndrome (excluding mosaic Down syndrome)#10.06Down

syndrome (excluding mosaic Down syndrome)> A. What impairment do we evaluate

under this body system? 1. General. We evaluate non-mosaic Down syndrome under

this body system.2. What is Down syndrome? Down syndrome is a condition in which

thereare three copies of chromosome 21 within the cells of the body insteadof

the normal two copies per cell. The three copies may be separate(trisomy), or

one chromosome 21 copy may be attached to a differentchromosome (translocation).

This extra chromosomal material changes theorderly development of the body and

brain. Down;syndrome ischaracterized by a complex of physical characteristics,

delayed physicaldevelopment, and mental retardation. Down syndrome exists in

non-mosaicand mosaic forms.3. What is non-mosaic Down syndrome? a. Non-mosaic

Down syndrome occurs when you have an extra copy ofchromosome 21 in every cell

of your body. At least 98 percent of peoplewith Down syndrome have this form

(which includes either trisomy ortranslocation type chromosomal abnormalities).

Virtually all cases ofnon-mosaic Down syndrome affect the mental, neurological,

and skeletalsystems, and they are often accompanied by heart disease,

impairedvision, hearing problems, and other conditions.b. We evaluate adults

with confirmed non-mosaic Down syndrome under10.06. If you have confirmed

non-mosaic Down syndrome, we consider youdisabled from birth. 4. What is mosaic

Down syndrome?a. Mosaic Down syndrome occurs when you have some cells with the

normaltwo copies of chromosome 21 and some cells with an extra copy ofchromosome

21. When this occurs, there is a mixture of two types ofcells. Mosaic Down

syndrome occurs in only 1-2 percent of people withDown syndrome, and there is a

wide range in the level of severity of theimpairment. Mosaic Down syndrome can

be profound and disabling, but itcan also be so slight as to be undetected

clinically. b. We evaluate adults with confirmed mosaic Down syndrome under

thelisting criteria in any affected body system(s) on an individual casebasis,

as described in 10.00C. B. What documentation do we need to establish that you

have non-mosaicDown syndrome? 1. General. We need documentation from an

acceptable medical source, asdefined in §§ 404.1513(a) and 416.913(a), to

establish that you have amedically determinable impairment. 2. Definitive

chromosomal analysis. We will find that you havenon-mosaic Down syndrome based

on a report from an acceptable medicalsource that indicates that you have the

impairment and that includes theactual laboratory report of definitive

chromosomal analysis showing thatyou have the impairment. Definitive chromosomal

analysis means karyotypeanalysis. In this case, we do not additionally require a

clinicaldescription of the diagnostic physical features of your impairment. 3.

What if we do not have the results of definitive chromosomalanalysis? When we do

not have the actual laboratory report of definitivechromosomal analysis, we need

evidence from an acceptable medical sourcethat includes a clinical description

of the diagnostic physical featuresof Down syndrome, and that is persuasive that

a positive diagnosis hasbeen confirmed by definitive chromosomal analysis at

some time prior toour evaluation. To be persuasive, the report must state that

definitivechromosomal analysis was conducted and that the results confirmed

thediagnosis. The report must be consistent with other evidence in yourcase

record; for example, evidence showing your limitations in adaptivefunctioning or

signs of a mental disorder that can be associated withnon-mosaic Down syndrome,

your educational history, or the results ofpsychological testing. C. How do we

evaluate other impairments that affect multiple bodysystems?1. Non-mosaic Down

syndrome (10.06) is an example of an impairment thatcommonly affects multiple

body systems and that we consider significantenough to prevent you from doing

any gainful activity. If you have adifferent severe impairment(s) that affects

multiple body systems, wemust also consider whether your impairment(s) meets the

criteria of alisting in another body system. 2. There are many other impairments

that can cause deviation from, orinterruption of, the normal function of the

body or interfere withdevelopment; for example, congenital anomalies,

chromosomal disorders,dysmorphic syndromes, metabolic disorders, and perinatal

infectiousdiseases. In these impairments, the degree of deviation or

interruptionmay vary widely from individual to individual. Therefore, the

resultingfunctional limitations and the progression of those limitations

alsovary widely. For this reason, we evaluate the specific effects of

theseimpairments on you under the listing criteria in any affected bodysystem(s)

on an individual case basis. Examples of such impairmentsinclude trisomy X

syndrome (XXX syndrome), fragile X syndrome,phenylketonuria (PKU), caudal

regression syndrome, and fetal alcoholsyndrome. 3. If you have a severe

medically determinable impairment(s) that doesnot meet a listing, we will

consider whether your impairment(s)medically equals a listing. (See §§ 404.1526

and 416.926.) If yourimpairment(s) does not meet or medically equal a listing,

you may or maynot have the residual functional capacity to engage in

substantialgainful activity. In that situation, we proceed to the fourth and,

ifnecessary, the fifth step of the sequential evaluation process in §§404.1520

and 416.920. We use the rules in §§ 404.1594 and 416.994, asappropriate, when we

decide whether you continue to be disabled. 10.01 Category of Impairments,

Impairments That Affect Multiple BodySystems 10.06 Non-mosaic Down syndrome,

established as described in 10.00B.[Non-text portions of this message have been

removed]

_________________________________________________________________

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December 9, 2006

My daughter just recently won her appeal in court after being denied

SSI, even though she qualified when she was five. Somehow 11 years later when

we reapplied they claimed she no longer qualified. But we won in the appeal. I

would need to look up the papers, which I will, but their were specific codes

that the lawyer used to prove her disability along with her cognitive scores she

had in school.

Kristy Colvin wrote:

Hi Everyone

I got a question today that I wanted to pass on to you all. If you have had

experiences with getting your 18 yr old SSI, please respond. On the hind site of

this, it is much easier for an 18 yr old to get SSI if he/she already has it or

has at least applied for it in the past. Here is the question...

We are applying for SSI. SSI has reviewed his records (from everyone, which

are extensive) and have determined they do not have enough justification to

warrant an eligibility status at this point based on primarily he has mosaic DS.

I have read the Federal Code of Regulations, the SSI Blue Book, sent extensive

records which indicate he is and will not be capable of self sufficient

financial means. SSI is requiring him to have a congnitive assessment ( at the

expense of SSI) to determine his IQ status and whether he is eligible. Sounds

like they plan to base this solely on IQ and not functional daily living skills.

I sent a letter with supporting documentation this morning to the SSI counselor.

Have you had experience or knowledge of an individual with Mosiac DS in the

similar situation as my son and I. I also have legal guardianship. The director

of my DS guild said her experience has been he could be found not eligible after

the IQ test if SSI is using “their

people”. We know how this works. All supporting documentation would justifiy

him receiving funds and sounds like they want to base this solely on IQ. He is

scheduled for this exam on Tue (12/12).

thanks for your advice

Kristy

---------------------------------

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December 10, 2006

In NSW, from the government, we receive a fortnightly carers

allowance (till 18) - mds or ds - it's the same thing, and its not

income assessed. But you do need to apply, it's not automatic. The

child also receives a health care card for discounted prescriptions.

, I have to say this, and to let you and others know that

playing around with payments from governments, no matter what country

they are can be painful. We also receive Family Allowances with

income assessments, and Child care rebates with income assessments

and all that jazz, and they are great.....But beware of them catching

up with you when you simply forget (or opt not to divulge) to tell of

changes in situations, be it financial, medical etc....

It's great to think that you are getting the money to help, but I

would hate for anyone to have to go through 'paying back' lump sums

of monies that they have been receiving over small monthly

sums....I've been there......It's not fun

, mum to scott 9,mds and emily 7

>

> With Social Security, you must play down all of your child's

abilities. You cannot let them know too much or they will disqualify

you. For me, I think DS is DS when being considered for SSI. I think

it is contradictory for doctors to classify all DS as the same, then

they turn around and state the opposite when it comes time to pay up

and help these kids. Every individual with DS has different levels of

functioning. Some of us are better at things, while some of us are

more deficient in others things. In my opinion, if DS is going to

considered all the same thing, then all people with any form of DS

need to be treated the same and need to receive services based to

help with their specific need. For my children (actually my whole

family including my husband), we have severe Auditory Processing

Disorders. that warrants a need enough for me.

>

> To: MosaicDS@...: mome23kjnc@...: Fri, 8 Dec 2006 16:39:34 -

0500Subject: RE: SSI Question

>

> It seems to me that the real issue lay with us not having

chromosomalanalysis done early enough. Ciarra had very few of the

physical featuresof DS, although she was " clinically diagnosed " at

birth. Our Geneticistwarned us against testing too many cells, that

she might be classifiedmosaic due to her functional levels. Perhaps

that is why he resitedhaving more than 2 cells analyzed? In any

event, the paperwork on ourdenials very clearly stated that

her " level of functionability " was notaffected enough to be

dx " disabled " . 10.00 Multiple Body

Systems<http://www.ssa.gov/disability/professionals/bluebook/10.00-

MultipleBody-Adult.htm#10.06 Down syndrome (excluding mosaic Down

syndrome)#10.06Down syndrome (excluding mosaic Down syndrome)> A.

What impairment do we evaluate under this body system? 1. General. We

evaluate non-mosaic Down syndrome under this body system.2. What is

Down syndrome? Down syndrome is a condition in which thereare three

copies of chromosome 21 within the cells of the body insteadof the

normal two copies per cell. The three copies may be separate

(trisomy), or one chromosome 21 copy may be attached to a

differentchromosome (translocation). This extra chromosomal material

changes theorderly development of the body and brain. Down;syndrome

ischaracterized by a complex of physical characteristics, delayed

physicaldevelopment, and mental retardation. Down syndrome exists in

non-mosaicand mosaic forms.3. What is non-mosaic Down syndrome? a.

Non-mosaic Down syndrome occurs when you have an extra copy

ofchromosome 21 in every cell of your body. At least 98 percent of

peoplewith Down syndrome have this form (which includes either

trisomy ortranslocation type chromosomal abnormalities). Virtually

all cases ofnon-mosaic Down syndrome affect the mental, neurological,

and skeletalsystems, and they are often accompanied by heart disease,

impairedvision, hearing problems, and other conditions.b. We evaluate

adults with confirmed non-mosaic Down syndrome under10.06. If you

have confirmed non-mosaic Down syndrome, we consider youdisabled from

birth. 4. What is mosaic Down syndrome?a. Mosaic Down syndrome occurs

when you have some cells with the normaltwo copies of chromosome 21

and some cells with an extra copy ofchromosome 21. When this occurs,

there is a mixture of two types ofcells. Mosaic Down syndrome occurs

in only 1-2 percent of people withDown syndrome, and there is a wide

range in the level of severity of theimpairment. Mosaic Down syndrome

can be profound and disabling, but itcan also be so slight as to be

undetected clinically. b. We evaluate adults with confirmed mosaic

Down syndrome under thelisting criteria in any affected body system

(s) on an individual casebasis, as described in 10.00C. B. What

documentation do we need to establish that you have non-mosaicDown

syndrome? 1. General. We need documentation from an acceptable

medical source, asdefined in §§ 404.1513(a) and 416.913(a), to

establish that you have amedically determinable impairment. 2.

Definitive chromosomal analysis. We will find that you havenon-mosaic

Down syndrome based on a report from an acceptable medicalsource that

indicates that you have the impairment and that includes theactual

laboratory report of definitive chromosomal analysis showing thatyou

have the impairment. Definitive chromosomal analysis means

karyotypeanalysis. In this case, we do not additionally require a

clinicaldescription of the diagnostic physical features of your

impairment. 3. What if we do not have the results of definitive

chromosomalanalysis? When we do not have the actual laboratory report

of definitivechromosomal analysis, we need evidence from an

acceptable medical sourcethat includes a clinical description of the

diagnostic physical featuresof Down syndrome, and that is persuasive

that a positive diagnosis hasbeen confirmed by definitive chromosomal

analysis at some time prior toour evaluation. To be persuasive, the

report must state that definitivechromosomal analysis was conducted

and that the results confirmed thediagnosis. The report must be

consistent with other evidence in yourcase record; for example,

evidence showing your limitations in adaptivefunctioning or signs of

a mental disorder that can be associated withnon-mosaic Down

syndrome, your educational history, or the results ofpsychological

testing. C. How do we evaluate other impairments that affect multiple

bodysystems?1. Non-mosaic Down syndrome (10.06) is an example of an

impairment thatcommonly affects multiple body systems and that we

consider significantenough to prevent you from doing any gainful

activity. If you have adifferent severe impairment(s) that affects

multiple body systems, wemust also consider whether your impairment

(s) meets the criteria of alisting in another body system. 2. There

are many other impairments that can cause deviation from,

orinterruption of, the normal function of the body or interfere

withdevelopment; for example, congenital anomalies, chromosomal

disorders,dysmorphic syndromes, metabolic disorders, and perinatal

infectiousdiseases. In these impairments, the degree of deviation or

interruptionmay vary widely from individual to individual. Therefore,

the resultingfunctional limitations and the progression of those

limitations alsovary widely. For this reason, we evaluate the

specific effects of theseimpairments on you under the listing

criteria in any affected bodysystem(s) on an individual case basis.

Examples of such impairmentsinclude trisomy X syndrome (XXX

syndrome), fragile X syndrome,phenylketonuria (PKU), caudal

regression syndrome, and fetal alcoholsyndrome. 3. If you have a

severe medically determinable impairment(s) that doesnot meet a

listing, we will consider whether your impairment(s)medically equals

a listing. (See §§ 404.1526 and 416.926.) If yourimpairment(s) does

not meet or medically equal a listing, you may or maynot have the

residual functional capacity to engage in substantialgainful

activity. In that situation, we proceed to the fourth and,

ifnecessary, the fifth step of the sequential evaluation process in

§§404.1520 and 416.920. We use the rules in §§ 404.1594 and 416.994,

asappropriate, when we decide whether you continue to be disabled.

10.01 Category of Impairments, Impairments That Affect Multiple

BodySystems 10.06 Non-mosaic Down syndrome, established as described

in 10.00B.

December 10, 2006

thanks for the concern , but my son is 3 1/2 and still not talking. We won't

have to pay anything back to anyone. As far as financial, I don't think anyone

can get more desperate than us. There are 4 of us that live on $603 per month.

So, his diagnosis change did not change his condition at all. All it did do was

give rise for us to file a lawsuit against the doctors who misdiagnosed him.

Granted if we win, then we will have to disclose any amount to SS Adm. But we

will in turn use the money to purchase another home (since we lost the one we

had due to this diagnosis and what all happened). They do not use your home

against you for counting resources. That is our plan. they actually still owe us

about $7,000. for the first year when they declined to give my son anything.

They mistakenly had my husband's income listed under my name. they corrected the

income error , but said that case was closed and refused to reimburse my son.

had we had that money to live on, we would not have lost our $300,000 home and

my only means of transportation. In addition, we lost over $100,000 worth of

belongings that i was unable to move myself.

My two other children do meet the criteria established under the guidelines, but

due to the late diagnosis (also the fault of the doctors who misdiagnosed my son

since they took one look at them and said it was obvious they did not have any

form of DS), they are giving us hell and making us prove beyond a shadow of a

doubt that they indeed need the SSI. Without the SSI, I will be unable to get

them the needed speech therapy and help for the APD they have. My eldest

daughter went undiagnosed for the APD and is set in her ways now. I told her to

apply, but she hasn't the knowledge nor the patience to put up with the SS Adm.

SO, I am not doing anything wrong here as it seemed that your message implied.

However, we intend to get every penny that we are entitled to from the

government and other means due in whole or in part to the fact that I explicitly

REFUSED for them to delve into our protected genetic identity and they broke the

law; NOW, I am playing their game. If " you can't beat 'em, join 'em " is what I

always heard and NO ONE would help me when i was destitute. Instead they all

wanted to get up in a court of law and state that I did " cocaine " and that is

what caused the DS. (How absurd is that!) They proved after 17 drug tests, a

drug assessment and evaluation, and a fatal thyroid disease (they caused) in me

later amongst everything else, that I was drug free. The record still exists and

is permanent. I think what they did to me and my family was an abomination! And

I intend to use my knowledge of the law to get back every cent they took from us

and more.

I apologize if I came across really strong, but you hit a very sore spot and you

have no idea what you are talking about. They screwed me; I am not screwing

them. They started it and I intend to finish it.

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To: MosaicDS@...: hermii3@...: Sun, 10 Dec 2006

09:13:55 +0000Subject: Re: SSI Question

In NSW, from the government, we receive a fortnightly carers allowance (till 18)

- mds or ds - it's the same thing, and its not income assessed. But you do need

to apply, it's not automatic. The child also receives a health care card for

discounted prescriptions. , I have to say this, and to let you and others

know that playing around with payments from governments, no matter what country

they are can be painful. We also receive Family Allowances with income

assessments, and Child care rebates with income assessments and all that jazz,

and they are great.....But beware of them catching up with you when you simply

forget (or opt not to divulge) to tell of changes in situations, be it

financial, medical etc....It's great to think that you are getting the money to

help, but I would hate for anyone to have to go through 'paying back' lump sums

of monies that they have been receiving over small monthly sums....I've been

there......It's not fun, mum to scott 9,mds and emily 7>> With

Social Security, you must play down all of your child's abilities. You cannot

let them know too much or they will disqualify you. For me, I think DS is DS

when being considered for SSI. I think it is contradictory for doctors to

classify all DS as the same, then they turn around and state the opposite when

it comes time to pay up and help these kids. Every individual with DS has

different levels of functioning. Some of us are better at things, while some of

us are more deficient in others things. In my opinion, if DS is going to

considered all the same thing, then all people with any form of DS need to be

treated the same and need to receive services based to help with their specific

need. For my children (actually my whole family including my husband), we have

severe Auditory Processing Disorders. that warrants a need enough for me.> > >

To: MosaicDS@...: mome23kjnc@...: Fri, 8 Dec 2006 16:39:34 -0500Subject: RE:

SSI Question> > > > > It seems to me that the real issue lay with us not

having chromosomalanalysis done early enough. Ciarra had very few of the

physical featuresof DS, although she was " clinically diagnosed " at birth. Our

Geneticistwarned us against testing too many cells, that she might be

classifiedmosaic due to her functional levels. Perhaps that is why he

resitedhaving more than 2 cells analyzed? In any event, the paperwork on

ourdenials very clearly stated that her " level of functionability " was

notaffected enough to be dx " disabled " . 10.00 Multiple Body