Good grief!!  It was hard enough getting the reduced SSD $144/mo. benefit on
the 2nd try and I remember it really upsetting me at the time.  It would be
difficult jumping throughall  these hoops if you were well.

After my first try they told me I could do   "data entry" rather than
wordprocessing, which is actually harder.  I typed up a paper explaing  WHAT
RAYILYN BROWN CANNOT DOO with all the errors on it.  I also cried when I had
my meeting and luckily got a sympathetic person.  Beleive me  this "cry" was
not phoney - this pr oocooess reduces you to teears.and I don't cry easily.

Ray

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
[log in to unmask]
----- Original Message -----
From: "Nina P. Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, February 20, 2008 9:37 AM
Subject: Re: Social Security


  When the time comes to think about disability, maybe something in
this article I printed in the HAPS newsletter a few years ago may be
helpful:


  Parkinson’s disease (PD) is a particularly difficult disease for
Social Security Administration (SSA) personnel to understand and
evaluate because of the varied symptoms which manifest differently in
everyone.  Therefore, the crux of a PD disability case is built around
the need to emphasize over and over again, in writing and in your
doctor visits and interviews throughout the process, that no matter
what your physical, mental or psychological problems the nature of
your illness is such that you never know what your body will do or
when your medicines will control your symptoms.  You don’t know when
you can perform and you never know how long or how well you can
perform. Your attendance is unpredictable and your work product is
unreliable – therefore you are unemployable.

How to survive the Social Security Disability Process:

1)         Keep in mind that Social Security Disability Income (SSDI)
is not welfare.  It is an earned benefit.  You have paid into the
system and you are entitled to benefits if you meet the criteria.
2)         For a person with PD to qualify for SSDI benefits you must
meet the requirements listed in section 11.06 of the SS Listing of
Impairments:  “Significant rigidity, bradykinesia or tremor in two
extremities which, singly or in combination, result in sustained
disturbance of gross and dexterous movements, or gait and station.”
3)         The process is not a difficult one, but it does take
organizational skills, patience and perseverance.
4)         Buy a notebook and take notes on every phone conversation
you have with doctors, nurses, insurance companies, pharmacists, and
especially with any SSA representatives.  Include the day, date, time,
the person’s name, title, phone number and extension.  Write down the
gist of your conservation and quote verbatim anything they told you
that directly affects your case, or seems to contradict something else.
5)         Start right now - TODAY - to collect all records pertaining
to your illness.  Buy a 3-ring binder and organize everything in
chronological order.  If you don’t already have written reports of
past doctor visits, call his/her administrative assistant or nurse and
request them.  Include past and future written reports of each doctor
visit, a dated list of your medications each time they change, any
yearly evaluations from work that indicate you are regressing, all
insurance reports, reports from any other physicians, including
therapists, foot doctors, back doctors, your ob/gyn, internist–any
medical professionals who observe your condition and can attest that
you are disabled and/or that your physical condition is deteriorating.
6)         Send everything by registered mail and get a receipt.  If
an SSA office is near you, deliver the forms in person and have them
time stamped, dated and signed.
7)         Fill out the form completely and attach extra sheets if
necessary.  Don’t limit yourself to the space provided.  Emphasize
what you CAN’T do, not what you can do.  If asked if you can dress
yourself, do not say yes or no.  Tell them how difficult it is to
dress yourself and how long it takes compared to your pre-PD life.
8)         Be ready to describe a typical day and how you occupy your
time.  You will almost certainly be asked this.  Remember to again
emphasize what you CAN’T do, not what you can do. This web site can
help you:  www.disabilty.com  Go to their home page and click on SS
Disability Online for a wealth of information.  Ask family and friends
what they notice different about you – what you appear to be
struggling with, how you are getting worse.  Take notes.  Sometimes
they have insights you might miss or might be denying.
9)         Describe special tools you need to accomplish tasks. Take
note of the time it takes you to accomplish everyday tasks, compared
to how long it used to take before PD.  Be specific.  For instance,
with optimal conditions you may be able to get out of bed and be ready
to leave the house in one and one-half hours, but on the other hand,
you may never know when you wake up how well your medications or
muscles are functioning, so this could take as long as 3-4 hours.
10)      You may be asked to see a doctor that they have chosen.  They
give independent examinations but do not make recommendations or give
advice on your case.
11)      Don’t worry about losing money if the process takes longer
than you anticipated.  If you are approved you will receive back pay.
12)      If you are over 50 it helps, and if you are over 55 it helps
even more.  Your age and education are also factors used to determine
if you still can work.
13)      Sometimes when you call the SSA you will get different
answers to the same questions.  Be sure to keep track of who told you
what in your notebook.  Call back and talk to another representative
or a supervisor if you have been given conflicting information.
14)      Include all your medical records with your initial
application.  This could help shorten your processing time.  Also,
retain a copy of everything sent to the SSA by doctors and anyone else
communicating with them on your behalf so there are no
misunderstandings about what is and is not in your file.
15)      Check periodically with your case worker to be sure that they
are receiving all the information you and they are requesting from
doctors, etc.  Be sure to do this in the spirit of helping the
caseworker, not demanding to know what is going on with your case.
16)      Meet all the deadlines you are given.
17)      You may be asked to get statements from relatives, co-workers
or friends.  Ask them to be honest and emphasize what you CAN’T do.
This is not the time for them to be diplomatic.
18)      If you end up having an administrative hearing, do not worry,
it’s not that bad.
19)      Wear business or business casual clothes.
20)      Do not drive to any appointments or hearings.  You will be
asked if you did.
21)      If your handwriting is shaky, have someone else fill out your
forms.  This illustrated that you cannot perform the basic tasks
required in most jobs.
22)      DO NOT BE DISCOURAGED if you are turned down on your initial
application and on “reconsideration”.  The process becomes abruptly
fairer when you make it to the Hearings level.  Below the Hearings
level, the SSA staff is overloaded and bogged down with paper work.
However, at the Office of Hearings and Appeals (OHA) there is both
time and competence, medical expertise, concern, compassion and in
general, fairness.  Hearings are typically low key, always private,
relatively informal and non-adversarial – nothing to fear.
23)      If your case goes to a hearing you are allowed to go before
the date of your hearing and make copies of your file.  You will
probably be surprised at how large and inclusive it is.
24)      If your doctor is uncooperative or doesn’t seem to get around
to sending reports or information you request, offer to write them for
him, pending his approval and signature.  Some doctors welcome you
doing the work for them.
25)      When you make the decision to file for SSDI, do so at the
earliest possible date.  Your case calendar won’t be retroactive
earlier than the date you filed, even if you were ill or missed work.

Nina Brown
  "Circumstances determine our lives, but we shape our lives by what
we make of our circumstances."

Secretary/Founding Board Member, The Alliance for Medical Research
(http://www.tamr-ed.org)
Founding Board Member, Texans for Advancement of Medical Research
(http://www.txamr.org)
Vice President, Houston Area Parkinson Society
  (http://www.hapsonline.org)
State Coordinator, Parkinson's Action Network
(http://www.parkinsonsaction.org)


On Feb 19, 2008, at 5:02 PM, [log in to unmask] wrote:

> I need to ask the group a question. I have Parkinsons and am 56 been
> diagnosed since 2001 and am doing fairly well.  I am still working.   I am
> a New York
> Ctiy Special Education teacher.  My question is:  when the time  comes
> that I
> need to go on SS disability, can I collect ssd and my full teacher's
> disability
> pension?  I have heard Ray mention a few times that this is double
> dipping
> from the Reagan era.  I am counting on the 2 sources of money when  the
> time
> comes.  Is it a federal law or just unique to certain states?  I  would
> appreciate
> if anyone could advise.
>
> Janet

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