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