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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 > ) > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn