Nina,

Thanks so much for (re)posting this practical and helpful piece!

Kathleen!

2009/6/7 Nina P. Brown <[log in to unmask]>

> First, let me apologize for some of the  posts that I send, that have
> nothing in them.  When I am reading from my phone in bed, I still mess  up
> and hit the wrong little button and it sends out a reply that shouldn't be a
> reply but a pass to the next message.  sorry.
>
> A while back I posted an article I put in the HAPS (Houston Area Parkinson
> Society 's) newsletter that was about disability.  The list gave some other
> great suggestions, that when I give it a second go-around I was going to add
> but I haven't  yet.  Since something  is usually better than nothing, I am
> going to post what I have now and hope it helps someone.
>
>
>
>
> 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.  So me 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.
>
> Good luck!
> Nina
> "Circumstances determine our lives, but we shape our lives by what we make
> of our circumstances."
>
>
> On Jun 6, 2009, at 8:58 AM, Nina Brown wrote:
>
>  -----Original Message-----
>> From: [log in to unmask]
>> Sent: Saturday, June 06, 2009 1:47 AM
>> To: [log in to unmask]
>> Subject: for those old timers that remember
>>
>>
>> This is Chuck using Joyce's membership to sign on.
>>
>>
>>
>> After nearly 28 years with PD, Joyce is still with us in (almost) fine
>> condition.
>>
>>
>> After personally funding her live-in companion(s) since 1996 it was
>> impossible to continue
>> and I had to seek alternative ideas.
>>
>> Some of you might remember my sadness to have to make the decision to
>> divorce Joyce in order to make
>> a Medicaid application for assistance.    Finally I had no  choice and we
>> were divorced in 2007.
>>
>> What followed was the most difficult financial audit in my  lifetime.
>> having a private business I was subjected to state and  federal
>> examinations
>> including state sales tax audits.   I passed all  without exemption!!!
>>
>> Nothing can compare to a medicaid audit.   I hired the top  medicaid
>> lawyer
>> in South Carolina, called many times to testify in front of  state
>> appellate and federal level counts including the US Supreme court for
>>  medicaid
>> cases.  She knows her stuff.
>>
>> The current look back is five years but she found a provision to narrow it
>> to three....big deal...!!
>>
>> Folks,  if anyone is considering applying to Medicaid be ready to  provide
>> in duplicate and triplicate every single transaction from whatever  source
>> which can be shown which could be thought of as a way to reduce the
>> beneficiaries assets.   For me it was a five month process and a  dossier
>> of nearly
>> 4 inches of papers.  EVERYTHING  financial over $1000 was requested in
>> more
>> than one  direction.  What made it soooo difficult was that the three
>> years
>> prior  included years that we were married and co mingled  investment and
>> bank  accounts.  Ouch.
>>
>> Items such as helping our son's wedding,  our other son's car down
>>  payment
>> and many more normal family actions that were NOT accepted because in
>> effect it was considered a gift.     believe me this  sucked.
>>
>> If any lives in South Carolina there is another program under which the
>> patient can apply and which is for the most part not publicly advertised.
>>   I
>> will supply the info if you ask me.   The criteria is similar but  has
>> some
>> leeway that straight medicaid does not have.
>>
>> After 4 months she was accepted for 1/2 of the benefits...medical and
>> medicine...leaving the actual living expenses in a nursing home (assisted
>> living
>> is not covered)   up in the air.   The bills kept coming but  since we
>> didn't know if we were accepted how far back they would  cover.    so i
>> never
>> paid anything except her personal care  items.
>>
>> I contacted the state ombudslady who after hearing and reading my letter
>> asking for her support agreed to act on my behalf...the lawyer was against
>> a
>> brick wall...
>>
>> It worked and with a lot of tears from the lawyer, ambudslady and  ME
>>  last
>> week I received notice that she qualified for the missing link and  I was
>> totally free of ALL expenses.
>>
>> Joyce is now living in a nursing home in Columbia, South Carolina, using
>>  a
>> power wheelchair to get around and which opened a new world for  her.
>> Her
>> PD symptoms continue as was for years and years...no use of  her legs
>> complicated by the loss of the use of her right hand due to an car
>>  accident.
>> She is the life of the party, knows everyone,   just received an honor for
>> redesigning and reorganizing the library,   credited with starting a maj
>> jong
>> game club..and known as somebody who will  always bring a smile to anyone
>> near.
>>
>> Nobody every accepts PD or a nursing home but she has made peace with
>> herself...i think...
>>
>> We remain closest friends and I am thankful to my current wife who
>>  totally
>> supports my efforts and actions for Joyce.   Although they  havent met,
>> Joyce continually sends her thanks to us both.
>>
>> If anyone is interested in writing to her, and although she cant write
>> back,  she will dictate to me and Ill answer all mail.    I  will give her
>> address to anyone interested who requests it to Joyce's private  email
>> at   [log in to unmask] (mailto:[log in to unmask])
>>
>>
>> I had to share this experience for those who find themselves facing
>> financial disaster due to the care giving expenses which will keep
>>  mounting.
>> The thought of divorce was the hardest but something that  MUST be done,
>>
>> good luck to all..
>>
>> Chuck  CG Joyce  first dx 1981  now 65 years  old.
>>
>>
>>
>>
>>
>>
>> **************Stay connected and tighten your budget with a great mobile
>> device for under $50. Take a Peek!
>> (
>> http://pr.atwola.com/promoclk/100122638x1221845911x1201401556/aol?redir=http://www.getpeek.com/aol
>> )
>>
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