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Seeking advice on filing for SS Disability

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Kendra

I am sorry you had to find us but glad you did. As for SS, here in Florida

if you go to the SS office they have people who help you fill out the forms. I

would bring whatever medical papers you can get from the doctor that explains

her condition. But before going I would call them to find out what other

info is needed. Go armed and ready with original copies of whatever they want.

Here they don't take copies it must be original.

I take it you are trying to get her on what is called Medicaid here. Sharon

is one of the people on this board that will more than likely answer your

request and she is sort of an expert on SS help.

Good Luck and Hugs from So Florida

Jacqui

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Hi,

I'm new to the group. My mother (age 56) has been diagnosed with

rapid onset LBD with Alzheimer's Variance and (with severe aphasia

and Parkinson's symptoms). Symptoms suddenly started in July 2006.

Already, we're to the point where we need professional in-home care.

Things are hitting us fast. My mother and father live in TX. My

father is the primary caregiver right now, and I live in MI and am

dividing my time between caregiving in TX and my family in MI. Each

day is different, and I've been reading some of the e-mail postings

here, and I can already easily identify with other's LBD experiences

right down to the runny nose. This group seems like a great support

network to be involved with.

We're in the process of filing for Social Security Disability for

her. He's spend hours and hours working on the form already. I'm

wondering if you all might know of a website or resource we can

reference to make sure we fill the form out right and increase our

chances of being approved the first time around...(i.e., is there

a " filing for dementia disability for dummies " book out there?)

Thanks in advance for any leads.

Kindest regards,

Kendra

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Kendra,

I am an expert at nothing, but i would think

her own doctor or someone your doctor could recommend

to be able to explain something like LBD takes

pretty much a health care provider.

Trying to help.

Maggie/caregiver to mother with LBD age 78

--- Kendra wrote:

> Hi,

>

> I'm new to the group. My mother (age 56) has been

> diagnosed with

> rapid onset LBD with Alzheimer's Variance and (with

> severe aphasia

> and Parkinson's symptoms). Symptoms suddenly started

> in July 2006.

> Already, we're to the point where we need

> professional in-home care.

> Things are hitting us fast. My mother and father

> live in TX. My

> father is the primary caregiver right now, and I

> live in MI and am

> dividing my time between caregiving in TX and my

> family in MI. Each

> day is different, and I've been reading some of the

> e-mail postings

> here, and I can already easily identify with other's

> LBD experiences

> right down to the runny nose. This group seems like

> a great support

> network to be involved with.

>

> We're in the process of filing for Social Security

> Disability for

> her. He's spend hours and hours working on the form

> already. I'm

> wondering if you all might know of a website or

> resource we can

> reference to make sure we fill the form out right

> and increase our

> chances of being approved the first time

> around...(i.e., is there

> a " filing for dementia disability for dummies " book

> out there?)

>

> Thanks in advance for any leads.

>

> Kindest regards,

>

> Kendra

>

>

__________________________________________________

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When I applied for SSDI 5 years ago my employer hired an attorney to

help me. I'd maybe call the local bar association and see if there

are attorney's in your Mom and Dad's area that could help? It really

helped a lot - dealing with the government is never easy and logic is

not always something the case workers specialize in.

Diane

>

> Hi,

>

> I'm new to the group. My mother (age 56) has been diagnosed with

> rapid onset LBD with Alzheimer's Variance and (with severe aphasia

> and Parkinson's symptoms). Symptoms suddenly started in July 2006.

> Already, we're to the point where we need professional in-home care.

> Things are hitting us fast. My mother and father live in TX. My

> father is the primary caregiver right now, and I live in MI and am

> dividing my time between caregiving in TX and my family in MI. Each

> day is different, and I've been reading some of the e-mail postings

> here, and I can already easily identify with other's LBD experiences

> right down to the runny nose. This group seems like a great support

> network to be involved with.

>

> We're in the process of filing for Social Security Disability for

> her. He's spend hours and hours working on the form already. I'm

> wondering if you all might know of a website or resource we can

> reference to make sure we fill the form out right and increase our

> chances of being approved the first time around...(i.e., is there

> a " filing for dementia disability for dummies " book out there?)

>

> Thanks in advance for any leads.

>

> Kindest regards,

>

> Kendra

>

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hi kendra,

first of all welcome to our family although it saddens me that you had to find

us.

feel free to vent, scream, yell, cry, ask questions, share stories whatever it

takes to help you thru this roller coaster ride.

as for soc sec, i filed back in 1988 and even then it was difficult. i assure

you that the only people that get approved the first time are those with

terminal cancer. you will be turned down once and then you can appeal to

another caseworker for evaluation, and then probably get turned down again, you

can either get an atty and give them 1/3 for their time and trouble or you can

request a formal hearing and present your case. i went the lawyer way and

literally gave her 3000 for nothing, all she did was write one letter and agin i

was turned down, i finally went to my state senator and presented my case to

win.

what i suggest you do, is fill out the paperwork as completely as possible.

include all symptoms and diseases. not just lbd, but if shehas copd, or

arthritis etc. leave nothing out, all of it is releveant, you will need to

list all doctors taht have treated your mom. also. since lbd is not a well

known form of dementia, i would include literature about lbd aswell. the more

information you suppl the better your chances are. i had a caseworker who was

intereted in learning about my bladder disease as it was then a new diseaese.

and i supplied all the information icould to aid my case. the key to soc sec is

they make you work hard for it, in hopes that you will give upand go back to

work instead, and that is their proof that you really didnt need it in the first

place. be sure to make copies of everything you send, oh and the information

you send them hilght relevant things. like fluctuating cognition,

hallucinations, etc. esp the syptoms that effect your mom.

my daughter is trying to get soc sec disability as her ankles are bone on bone

now, no cartilage between them and full of bone spurs and arthritis. she has

pins in one ankle already ad it is fused she can not turn her ankle very much

and they re wanting to do the other one, she has difficulite standing and

walking for any length of time.she just got her first turn down and has now

asked for a second case manager to review her case. it is just a matter of

perserverance.

dont let it frustrate you, just keep plugging away. i hope this info helps

some, hugs, sharon m

---- Kendra wrote:

Hi,

I'm new to the group. My mother (age 56) has been diagnosed with

rapid onset LBD with Alzheimer's Variance and (with severe aphasia

and Parkinson's symptoms). Symptoms suddenly started in July 2006.

Already, we're to the point where we need professional in-home care.

Things are hitting us fast. My mother and father live in TX. My

father is the primary caregiver right now, and I live in MI and am

dividing my time between caregiving in TX and my family in MI. Each

day is different, and I've been reading some of the e-mail postings

here, and I can already easily identify with other's LBD experiences

right down to the runny nose. This group seems like a great support

network to be involved with.

We're in the process of filing for Social Security Disability for

her. He's spend hours and hours working on the form already. I'm

wondering if you all might know of a website or resource we can

reference to make sure we fill the form out right and increase our

chances of being approved the first time around...(i.e., is there

a " filing for dementia disability for dummies " book out there?)

Thanks in advance for any leads.

Kindest regards,

Kendra

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

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Kendra,

I am also in MI. In what part of the State are you located. I have heard there

are no easy ways to get Disability SS. I haven't tried. I would think

information that there is no cure would be helpful. It isn't like she is going

back to work,

Hang in with us and others will help where and when they can.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Seeking advice on filing for SS Disability

When I applied for SSDI 5 years ago my employer hired an attorney to

help me. I'd maybe call the local bar association and see if there

are attorney's in your Mom and Dad's area that could help? It really

helped a lot - dealing with the government is never easy and logic is

not always something the case workers specialize in.

Diane

>

> Hi,

>

> I'm new to the group. My mother (age 56) has been diagnosed with

> rapid onset LBD with Alzheimer's Variance and (with severe aphasia

> and Parkinson's symptoms). Symptoms suddenly started in July 2006.

> Already, we're to the point where we need professional in-home care.

> Things are hitting us fast. My mother and father live in TX. My

> father is the primary caregiver right now, and I live in MI and am

> dividing my time between caregiving in TX and my family in MI. Each

> day is different, and I've been reading some of the e-mail postings

> here, and I can already easily identify with other's LBD experiences

> right down to the runny nose. This group seems like a great support

> network to be involved with.

>

> We're in the process of filing for Social Security Disability for

> her. He's spend hours and hours working on the form already. I'm

> wondering if you all might know of a website or resource we can

> reference to make sure we fill the form out right and increase our

> chances of being approved the first time around...(i.e., is there

> a " filing for dementia disability for dummies " book out there?)

>

> Thanks in advance for any leads.

>

> Kindest regards,

>

> Kendra

>

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Don't know if this helps or not... But here's the US insurance code &

description for LBD:

2006 ICD-9-CM Diagnosis 331.82

Dementia with lewy bodies

A neurodegenerative disease characterized by dementia, mild

parkinsonism, and fluctuations in attention and alertness. The

neuropsychiatric manifestations tend to precede the onset of

bradykinesia, MUSCLE RIGIDITY, and other extrapyramidal signs.

DELUSIONS and visual HALLUCINATIONS are relatively frequent in this

condition. Histologic examination reveals LEWY BODIES in the CEREBRAL

CORTEX and BRAIN STEM. SENILE PLAQUES and other pathologic features

characteristic of ALZHEIMER DISEASE may also be present.

(FYI -- ICD-9-CM is the official system of assigning codes to diagnoses

and procedures associated with hospital utilization in the United

States.)

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Hi all, I had to be off a few days. We both applied for SS. Nothing. We were

evaluated by doctors that said we were disabled. We went to a good lawyer.

It was worth every penny! Which wasn't much. They took their fee each month

from the SS check, then after three payments they let us have the whole check.

One letter from the lawyer, got us our SS checks coming in. We had done

without for nine months, because we didn't know the easier way.

Imogene

In a message dated 12/29/2006 2:43:27 AM Central Standard Time,

twomido@... writes:

Kendra,

I am also in MI. In what part of the State are you located. I have heard

there are no easy ways to get Disability SS. I haven't tried. I would think

information that there is no cure would be helpful. It isn't like she is

going back to work,

Hang in with us and others will help where and when they can.

Hugs,

Donna R

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And...

Going along the lines of your 'for dummies' comment:

Nolo's Guide to Social Security Disability: Getting & Keeping Your

Benefits (Paperback)

by A. Morton

(Five stars by customer)

Book Description

Understand -- and benefit from -- the Social Security disability

system

Nolo's Guide to Social Security Disability is an essential book for

anyone dealing with a long-term or permanent disability. Written both

for first-time applicants and those who already receive Social

Security disability, the book demystifies the program in plain

English, thoroughly explaining:

-what Social Security disability is

-what benefits are available to disabled children

-how to prove a disability

-how age, education and work experience affect benefits

-whether or not one can work while receiving benefits

-how to appeal a denial of benefits

-how to respond to a Continuing Disability Review

-and much more

Plus: The included CD-ROM provides in-depth medical listings to help

you determine what you qualify for. It covers breathing disabilities,

heart disease, mental disorders, speech impairments, cancer, immune

system disorders -- and much more.

The 3rd edition is completely updated with the latest rules,

information and medical listings. User-friendly appendices translate

bureaucratic terms, provide medical-vocational rules, and list Social

Security benefit publications.

(go to Amazon and search for the above title)

----------

And there's also:

The Complete Idiot's Guide to Social Security and Medicare, 2nd

Edition (Complete Idiot's Guide to) (Paperback)

by MBA, Epstein

(also at Amazon)

===========

And for those in the UK:

A-Z of Social Security Benefits for People with a Mental Health

Problem

by Grimshaw

The A-Z of social security benefits for people with mental health

problems by Grimshaw is available from Mind Publications,

Granta House, 15 – 19 Broadway, Stratford E15 4BQ priced £3.00 plus

10% post and packing. Please enclose A5 sized SAE. Tel: 020-8221 9666

or email at publications@... .

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Do they base the approval on the disability according to your income as well, or

is it solely on your medical condition ? Does anyone know ?

Thanks !

LadySmilingAtU2@... wrote:

hi kendra,

first of all welcome to our family although it saddens me that you had to find

us.

feel free to vent, scream, yell, cry, ask questions, share stories whatever it

takes to help you thru this roller coaster ride.

as for soc sec, i filed back in 1988 and even then it was difficult. i assure

you that the only people that get approved the first time are those with

terminal cancer. you will be turned down once and then you can appeal to another

caseworker for evaluation, and then probably get turned down again, you can

either get an atty and give them 1/3 for their time and trouble or you can

request a formal hearing and present your case. i went the lawyer way and

literally gave her 3000 for nothing, all she did was write one letter and agin i

was turned down, i finally went to my state senator and presented my case to

win.

what i suggest you do, is fill out the paperwork as completely as possible.

include all symptoms and diseases. not just lbd, but if shehas copd, or

arthritis etc. leave nothing out, all of it is releveant, you will need to list

all doctors taht have treated your mom. also. since lbd is not a well known form

of dementia, i would include literature about lbd aswell. the more information

you suppl the better your chances are. i had a caseworker who was intereted in

learning about my bladder disease as it was then a new diseaese. and i supplied

all the information icould to aid my case. the key to soc sec is they make you

work hard for it, in hopes that you will give upand go back to work instead, and

that is their proof that you really didnt need it in the first place. be sure to

make copies of everything you send, oh and the information you send them hilght

relevant things. like fluctuating cognition, hallucinations, etc. esp the

syptoms that effect your mom.

my daughter is trying to get soc sec disability as her ankles are bone on bone

now, no cartilage between them and full of bone spurs and arthritis. she has

pins in one ankle already ad it is fused she can not turn her ankle very much

and they re wanting to do the other one, she has difficulite standing and

walking for any length of time.she just got her first turn down and has now

asked for a second case manager to review her case. it is just a matter of

perserverance.

dont let it frustrate you, just keep plugging away. i hope this info helps some,

hugs, sharon m

---- Kendra wrote:

Hi,

I'm new to the group. My mother (age 56) has been diagnosed with

rapid onset LBD with Alzheimer's Variance and (with severe aphasia

and Parkinson's symptoms). Symptoms suddenly started in July 2006.

Already, we're to the point where we need professional in-home care.

Things are hitting us fast. My mother and father live in TX. My

father is the primary caregiver right now, and I live in MI and am

dividing my time between caregiving in TX and my family in MI. Each

day is different, and I've been reading some of the e-mail postings

here, and I can already easily identify with other's LBD experiences

right down to the runny nose. This group seems like a great support

network to be involved with.

We're in the process of filing for Social Security Disability for

her. He's spend hours and hours working on the form already. I'm

wondering if you all might know of a website or resource we can

reference to make sure we fill the form out right and increase our

chances of being approved the first time around...(i.e., is there

a " filing for dementia disability for dummies " book out there?)

Thanks in advance for any leads.

Kindest regards,

Kendra

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

__________________________________________________

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Thank you all for your many quick and insightful tips for filing. I

feel truly overwhelmed with support right now. I will pass this

information along to my father. This will really help to releive some

our stress as novices to " the system. "

I hope this New Year you all have an opportunity to remember and

cherish happy memories, and that we all will look forward to 2007 with

hope. Happy New Year to everyone.

Best,

Kendra

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mY experienc was that they base it on both income and disability.

Imogene

In a message dated 12/29/2006 8:21:31 AM Central Standard Time,

jonibeachbound@... writes:

Do they base the approval on the disability according to your income as

well, or is it solely on your medical condition ? Does anyone know ?

Thanks !

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Joni

soc sec disability is based on your inability to work in your regular profession

or one of equal pay. the amount you are paid is based on your income and how

much soc sec you have builtup during your work career . i was conidered totally

disabled at the age of 28, i drew just over 700. every year i get a small

increase. i hope this info helps, sharon m

---- Joni Henry wrote:

Do they base the approval on the disability according to your income as well, or

is it solely on your medical condition ? Does anyone know ?

Thanks !

LadySmilingAtU2@... wrote:

hi kendra,

first of all welcome to our family although it saddens me that you had to find

us.

feel free to vent, scream, yell, cry, ask questions, share stories whatever it

takes to help you thru this roller coaster ride.

as for soc sec, i filed back in 1988 and even then it was difficult. i assure

you that the only people that get approved the first time are those with

terminal cancer. you will be turned down once and then you can appeal to another

caseworker for evaluation, and then probably get turned down again, you can

either get an atty and give them 1/3 for their time and trouble or you can

request a formal hearing and present your case. i went the lawyer way and

literally gave her 3000 for nothing, all she did was write one letter and agin i

was turned down, i finally went to my state senator and presented my case to

win.

what i suggest you do, is fill out the paperwork as completely as possible.

include all symptoms and diseases. not just lbd, but if shehas copd, or

arthritis etc. leave nothing out, all of it is releveant, you will need to list

all doctors taht have treated your mom. also. since lbd is not a well known form

of dementia, i would include literature about lbd aswell. the more information

you suppl the better your chances are. i had a caseworker who was intereted in

learning about my bladder disease as it was then a new diseaese. and i supplied

all the information icould to aid my case. the key to soc sec is they make you

work hard for it, in hopes that you will give upand go back to work instead, and

that is their proof that you really didnt need it in the first place. be sure to

make copies of everything you send, oh and the information you send them hilght

relevant things. like fluctuating cognition, hallucinations, etc. esp the

syptoms that effect your mom.

my daughter is trying to get soc sec disability as her ankles are bone on bone

now, no cartilage between them and full of bone spurs and arthritis. she has

pins in one ankle already ad it is fused she can not turn her ankle very much

and they re wanting to do the other one, she has difficulite standing and

walking for any length of time.she just got her first turn down and has now

asked for a second case manager to review her case. it is just a matter of

perserverance.

dont let it frustrate you, just keep plugging away. i hope this info helps some,

hugs, sharon m

---- Kendra wrote:

Hi,

I'm new to the group. My mother (age 56) has been diagnosed with

rapid onset LBD with Alzheimer's Variance and (with severe aphasia

and Parkinson's symptoms). Symptoms suddenly started in July 2006.

Already, we're to the point where we need professional in-home care.

Things are hitting us fast. My mother and father live in TX. My

father is the primary caregiver right now, and I live in MI and am

dividing my time between caregiving in TX and my family in MI. Each

day is different, and I've been reading some of the e-mail postings

here, and I can already easily identify with other's LBD experiences

right down to the runny nose. This group seems like a great support

network to be involved with.

We're in the process of filing for Social Security Disability for

her. He's spend hours and hours working on the form already. I'm

wondering if you all might know of a website or resource we can

reference to make sure we fill the form out right and increase our

chances of being approved the first time around...(i.e., is there

a " filing for dementia disability for dummies " book out there?)

Thanks in advance for any leads.

Kindest regards,

Kendra

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

__________________________________________________

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Kendra, I know you got many answers about the SS

disability. I never had to file for it for my

husband, as he was already on SS when the illness set

in. However, from talking with others who have, I

think the amount is based on his work record, but in

addition, they increase it to include what he might

have made had he been able to keep working. So, my

guess would be is that they have a formula for the

amount he was making and his benefits at that time,

and then they take into consideration how many more

years he would have worked and what he would have made

and possibly use that as the final amount. I know I

called in after my husband became unable to work, and

because he was already getting SS, they would not put

him on the disability rate. Good luck in your filing,

and as someone else wrote, have everything you

possibly can when you go so that they may accept you

the first time. I have heard many horror stories

about being turned down one or more times before they

finally got the disability.

--- Kendra wrote:

> Thank you all for your many quick and insightful

> tips for filing. I

> feel truly overwhelmed with support right now. I

> will pass this

> information along to my father. This will really

> help to releive some

> our stress as novices to " the system. "

>

> I hope this New Year you all have an opportunity to

> remember and

> cherish happy memories, and that we all will look

> forward to 2007 with

> hope. Happy New Year to everyone.

>

> Best,

>

> Kendra

>

>

__________________________________________________

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Kendra -- I posed the question on another board I'm apart of and

here's their responses (many on that other board " Dementiarescue " has

EOAD so they have had the same experiences)

" I would suggest getting an attorney to do it. Something like 70-80%

of claims filed by individuals are denied the first time. We used

an attorney and my husband's claim was approved within 6 months. We

used Binder and Binder in New York. "

----

" In regards to SSD, I agree that if it has originally been turned

down, the best option is a Lawyer who specializes in that area. "

-----

" In regards to getting disability it is very difficult for individuals

under the age of 65 to attain especially with the stigma of the

disease (though it is changing). In my case it took 2 years of testing

over and over again and again. We were turned down the first time and

appealed and won, but we had to get a Disablity Advocate which is much

like an attorney, they do the same amount of work but take less of

your award. It came down to the diagnosis had to be worded just right.

I had been diagnosed with several diagnoses in relation to dementia

such as Organic Brain Disease, Mild Cognitive Impairment but that was

not acceptable. When the Neurologist was confident in his findings and

finally wrote EOAD my case went through.

It is very frustrating to fight a case such as this and it will take

much time as well as added stress, but hang it there. "

-------

" I did not have any problem getting my disability. I filed in Feb of

this year and I statring receiving my benifits in July. I just went

to the local SS office and told them what was going on with me and

they help me fill out the paperwork and my wife Carol provide them

with all the Doctor reports as they came in. I think what help me was

that Carol faxed over the neuro-phsy report in May when we got our

copy from the Doctor. I am 47 years old and I was also albe to gat SS

for my daughter since I was the primary support of money. She is only

12 and she will gat ie until she is 18. The other thing we did to was

we have gotten Carol as the responable party for all my SS issues. We

also have gotten all of our legal paperwork done Med Power of

Attorney, Power of attorney. We have also found out that if you have

any property(rental ) you have it out of your name for 5 years before

Medicare will help(long term housing). These are the things that we

are finding out. You will need an attorney at some point but most of

the paperwork you or your caregiver can do yourself.

P.S. I know my case is differnet I didn't have to go through a long

testing process(Years), only because I have a very strong family

history of EOAD or some form of Dementia. I am as some of you know

the generation to be experiencing this. "

-----

So the key word above is Disablity Advocate vs. just an attorney so I

found this site:

http://disability-advocate.com/

-----

Hope the above info helps!

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We tried three times, once just plain, the second time with medical backup

from doctors, and third with the attorney. Then it worked.

Imogene

In a message dated 12/30/2006 7:50:23 AM Central Standard Time,

octoryrose@... writes:

Kendra -- I posed the question on another board I'm apart of and

here's their responses (many on that other board " Dementiarescue " has

EOAD so they have had the same experiences)

" I would suggest getting an attorney to do it. Something like 70-80%

of claims filed by individuals are denied the first time. We used

an attorney and my husband's claim was approved within 6 months. We

used Binder and Binder in New York. "

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And a couple of more responses...

" i am on disability and it took 2 years to get it...denied twice

(expected)then before a judge the third time. i just called SS and

asked to apply. you can do your app on the phone which is better!

be concise w/paperwork and exagerate answers to questions. nan "

" for SS disabiltiy do not get an attorney until you have been turned

down 2x.......the same people turned you down the first and second

time. after that is when you need the attorny and he only gets paid

if you win. that is the law. nan "

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