Re: thanks steve

[Guest guest]

Cheryl,

From what I understand of the SS law, I

can see why your Doc would think you have a good case. The SSA definition of

Disability is much stricter than most private insurance or even State plans.

You can check it out at http://www.ssa.gov/dibplan/dqualify4.htm

.. Basically the definition boils

down to two tests: Do you have a condition that is expected to last more than a

year or could result in death, and if so, does your condition prevent you from doing

the work you did before or adjusting to other work. In making the determination, they refer

to the SS “Blue Book”, a list of diagnoses that automatically meet

these tests. If your diagnosis is not in the Blue Book, the Examiner has to

determine if the condition you have is similar to a diagnosis that is in the

Blue Book. This is why it’s important to be represented by someone who

knows the SS Blue Book, and can show the Examiner how your diagnosis falls

under one of the automatically covered diagnoses in the Blue Book. This need

not be a lawyer, and although I understand your confidence in your Doc’s

Ex-wife, I hate to see you give up so much of what you’re entitled to in order

to have her represent you. The SSD benefit is small enough in the best of cases.

There are many people who are knowledgeable about the SS system and willing to

represent you at no cost. The easiest way to get in touch with them is to

contact the local Legal Aid Society.

In my case, it was a Social Worker at my Tx Center who did the trick. The way the process works, as

Barb alluded to the other day is : You request an appointment for the purpose

of filing a claim, and are sent a preliminary questionnaire; When you return the

questionnaire a Claim Intake worker at the nearest office interviews you (in

most cases this is done over the phone, and in fact you can insist that it be

done by phone), and on the basis of the interview makes a “presumptive

determination” of your eligibility for SSI/Medicaid and SSD benefits; The

file is then forwarded to the Regional office (probably in the State Capitol),

where it’s assigned to a Claim Examiner who either concurs with the

Presumptive Determination and forwards it for payment, or disagrees with the

Presumptive Determination and issues a letter of denial. The Social Worker had prepared my case

file, with documentation of the diagnosis and the disabling effects of PSC, the

probability that it would last for at least a year, and the possibility that it

could result in death. When I called and told her that the Intake Worker had

told me that my case had been forwarded to Des Moines, she found

out the name and phone number of the Claim Examiner, called and talked to her,

and then faxed my file to her. Within two weeks I had official notice that my

claim had been granted. I know at least one other person, in another state, whose

claim was approved in two days. I don’t believe education, or the ability

to walk and move around unassisted, enters into consideration…I have a

college education,

was engaged in advanced technology, and I live alone. The

gentleman whose claim was granted in two days is also a college graduate, and

although he will need a lung Tx and possibly a liver Tx, and has only 20% lung function, drives several thousand

miles a year, unaccompanied, in doing donor awareness activities. The most

critical aspect, as I’ve said before, is having someone represent you who

understands the System and can guide the Examiner to the

section(s) of the Blue Book that cover you. It would also probably be helpful

if they were able to present a letter from your Doctor, indicating in explicit

detail all of the side effects of PSC that you are experiencing –

debilitating fatigue, etc. – as well as the unpredictable nature of the

course of PSC, with fluctuations in lab work that bear little or no relation to

the overall progress of the disease. While that might be difficult for you to

read and maintain a positive attitude, now is not the time to worry about that…after

your claim is approved you can work on “expecting the best and forgetting

the rest”. I hope that you will be able to find an advocate as helpful

for you as I did, without having to sacrifice such a big chunk your benefits.

As for the other part of your post, we are

indeed all unique individuals, with our own set of problems. Last Wednesday I had

an appointment with my Hep. The two or three days

before had not been very good, and I was feeling kind of sorry for myself when

I walked into the Clinic. But then I looked around, and saw three people

younger than I am who were so affected by liver disease that they are in a

wheelchair, several others that needed canes or walkers to move around, one who

had to carry an oxygen tank, one who walks almost bent double, and one whose

case file is so big it filled 6 spiral-bound notebooks. It sometimes helps me to remember that no

matter how bad it gets there’s always someone who is worse off.

Steve

Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Waiting for Re- Tx (U of Iowa)

" Most

men lead lives of quiet

desperation

and go to the grave

with the song still in them "

(Thoreau)

thanks

steve

Steve, with connie reminding me of

my manners and Maureen's words of encouragement, I can't remember if I thanked

you for your excellent advice on the SS disability. Can you tell me your story

on getting approval?

Sometimes I feel

like a wimp when I know how many of you have kept working through so much,

right up to your time of transplant, but then I remember that all of us are

individuals and not only do we each have a personalized, custom made form of

psc, we all have a different home life and job responsibilites. I know a man

here that is totally incapacitated with MS. He uses a motorized vehicle and

needs help breathing. He is able (with the help of his wife) to do some

computer work for the family construction business, because he's never been

able to totally quit and they have always paid him a full salary, SS won't help

him They could probably fight it, but they found the process and the people at

our local office so demeaning that last I talked to them, they weren't receiving

help.

Tell me, if I

didn't have my education, would they say that I am disabled? Since that was a

major reason they gave me for not granting me disability status? I don't think

that should be an issue. All IMHO of course. Cheryl ID 44, PSC, UC married 25

years, 4 children: 23, 21, 19 (only son), 15; two grchildren: 3 1/2, 15 months

[Guest guest]

Steve, wow that was a lot of very useful information. I will give legal aid a try, but we don't have the same resources here that larger, urban areas do. I know that 25% is a lot and if I can find some other source I will. In the old days, I could have done this myself, but I'm not the woman I used to be. you are absolutely right about others conditions putting my own in perspective. My sister's cancer used to be a constant source of perspective and inspiration to me, acutally it still is. I do miss her so much though. My husband never let's me even imagine I won't make it through all this. Partially, because he is terrified of me not being here and partially, I'm sure, because he knows that I must have a positive attitude. I am very lucky with my network of support. Thanks again. I hope I'm as lucky as you are in getting help. Cheryl Id 44, PSC, UC

RE: thanks steve

Cheryl,

From what I understand of the SS law, I can see why your Doc would think you have a good case. The SSA definition of Disability is much stricter than most private insurance or even State plans. You can check it out at http://www.ssa.gov/dibplan/dqualify4.htm . Basically the definition boils down to two tests: Do you have a condition that is expected to last more than a year or could result in death, and if so, does your condition prevent you from doing the work you did before or adjusting to other work. In making the determination, they refer to the SS “Blue Book”, a list of diagnoses that automatically meet these tests. If your diagnosis is not in the Blue Book, the Examiner has to determine if the condition you have is similar to a diagnosis that is in the Blue Book. This is why it’s important to be represented by someone who knows the SS Blue Book, and can show the Examiner how your diagnosis falls under one of the automatically covered diagnoses in the Blue Book. This need not be a lawyer, and although I understand your confidence in your Doc’s Ex-wife, I hate to see you give up so much of what you’re entitled to in order to have her represent you. The SSD benefit is small enough in the best of cases. There are many people who are knowledgeable about the SS system and willing to represent you at no cost. The easiest way to get in touch with them is to contact the local Legal Aid Society.

In my case, it was a Social Worker at my Tx Center who did the trick. The way the process works, as Barb alluded to the other day is : You request an appointment for the purpose of filing a claim, and are sent a preliminary questionnaire; When you return the questionnaire a Claim Intake worker at the nearest office interviews you (in most cases this is done over the phone, and in fact you can insist that it be done by phone), and on the basis of the interview makes a “presumptive determination” of your eligibility for SSI/Medicaid and SSD benefits; The file is then forwarded to the Regional office (probably in the State Capitol), where it’s assigned to a Claim Examiner who either concurs with the Presumptive Determination and forwards it for payment, or disagrees with the Presumptive Determination and issues a letter of denial. The Social Worker had prepared my case file, with documentation of the diagnosis and the disabling effects of PSC, the probability that it would last for at least a year, and the possibility that it could result in death. When I called and told her that the Intake Worker had told me that my case had been forwarded to Des Moines, she found out the name and phone number of the Claim Examiner, called and talked to her, and then faxed my file to her. Within two weeks I had official notice that my claim had been granted. I know at least one other person, in another state, whose claim was approved in two days. I don’t believe education, or the ability to walk and move around unassisted, enters into consideration…I have a college education, was engaged in advanced technology, and I live alone. The gentleman whose claim was granted in two days is also a college graduate, and although he will need a lung Tx and possibly a liver Tx, and has only 20% lung function, drives several thousand miles a year, unaccompanied, in doing donor awareness activities. The most critical aspect, as I’ve said before, is having someone represent you who understands the System and can guide the Examiner to the section(s) of the Blue Book that cover you. It would also probably be helpful if they were able to present a letter from your Doctor, indicating in explicit detail all of the side effects of PSC that you are experiencing – debilitating fatigue, etc. – as well as the unpredictable nature of the course of PSC, with fluctuations in lab work that bear little or no relation to the overall progress of the disease. While that might be difficult for you to read and maintain a positive attitude, now is not the time to worry about that…after your claim is approved you can work on “expecting the best and forgetting the rest”. I hope that you will be able to find an advocate as helpful for you as I did, without having to sacrifice such a big chunk your benefits.

As for the other part of your post, we are indeed all unique individuals, with our own set of problems. Last Wednesday I had an appointment with my Hep. The two or three days before had not been very good, and I was feeling kind of sorry for myself when I walked into the Clinic. But then I looked around, and saw three people younger than I am who were so affected by liver disease that they are in a wheelchair, several others that needed canes or walkers to move around, one who had to carry an oxygen tank, one who walks almost bent double, and one whose case file is so big it filled 6 spiral-bound notebooks. It sometimes helps me to remember that no matter how bad it gets there’s always someone who is worse off.

Steve Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Waiting for Re- Tx (U of Iowa)

"Most men lead lives of quiet

desperation and go to the grave

with the song still in them" (Thoreau)

-----Original Message-----From: Bergs Sent: Sunday, April 06, 2003 8:01 PMTo: Subject: thanks steve

Steve, with connie reminding me of my manners and Maureen's words of encouragement, I can't remember if I thanked you for your excellent advice on the SS disability. Can you tell me your story on getting approval?

Sometimes I feel like a wimp when I know how many of you have kept working through so much, right up to your time of transplant, but then I remember that all of us are individuals and not only do we each have a personalized, custom made form of psc, we all have a different home life and job responsibilites. I know a man here that is totally incapacitated with MS. He uses a motorized vehicle and needs help breathing. He is able (with the help of his wife) to do some computer work for the family construction business, because he's never been able to totally quit and they have always paid him a full salary, SS won't help him They could probably fight it, but they found the process and the people at our local office so demeaning that last I talked to them, they weren't receiving help.

Tell me, if I didn't have my education, would they say that I am disabled? Since that was a major reason they gave me for not granting me disability status? I don't think that should be an issue. All IMHO of course. Cheryl ID 44, PSC, UC married 25 years, 4 children: 23, 21, 19 (only son), 15; two grchildren: 3 1/2, 15 months

[Guest guest]

Cheryl,

FYI, here¡Çs the website for Idaho Legal

Aid Services http://www.idaholegalaid.org . Hope they can give you the help you

need.

Steve

Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Waiting for Re- Tx (U of Iowa)

" Most

men lead lives of quiet

desperation

and go to the grave

with the song still in them "

(Thoreau)

thanks

steve

Steve,

with connie reminding me of my manners and Maureen's words of encouragement, I

can't remember if I thanked you for your excellent advice on the SS disability.

Can you tell me your story on getting approval?

Sometimes I feel like a wimp when I know how many of you have kept working

through so much, right up to your time of transplant, but then I remember that

all of us are individuals and not only do we each have a personalized, custom

made form of psc, we all have a different home life and job responsibilites. I

know a man here that is totally incapacitated with MS. He uses a motorized

vehicle and needs help breathing. He is able (with the help of his wife) to do

some computer work for the family construction business, because he's never

been able to totally quit and they have always paid him a full salary, SS won't

help him They could probably fight it, but they found the process and the

people at our local office so demeaning that last I talked to them, they

weren't receiving help.

Tell me, if I didn't have my education, would they say that I am disabled?

Since that was a major reason they gave me for not granting me disability

status? I don't think that should be an issue. All IMHO of course. Cheryl ID

44, PSC, UC married 25 years, 4 children: 23, 21, 19 (only son), 15; two

grchildren: 3 1/2, 15 months

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[Guest guest]

Steve,

Thanks for sending that info to Cheryl about SSA disability. I have never seen that site before. It looks very helpful. I have given the info to my husband who has been intermittently working on getting disability for me. He was ready to file necessary papers last summer when our house/his office burned so all our documents went up in smoke and he is having to start over from scratch. Maybe this site will help him. Thanks for all your support and encouragement.

Blessings,

Barby

UC - age 11, ileostomy - age 17 (1972), continent ostomy - 1994

PSC - 1995

married 23 years, 5 sons ages 10-21

KS - tornado (1983) and house fire (2002) survivor