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Scott, After 7 years with PD, I am going through the same difficult decision making process about how long can I /should I continue to work. I also find all of my energy is gone by the time I get home. I agree it's a very unique decision for each one of us, affected not only by the designer nature of the disease but also by the nature of our jobs, the support or lack of support by our employers and supervisors. Occassionally I teach 45 minute classes and that is the most difficult part of my job - I doubt i could continue to work if i had to stand in front of a class most of the day. It is a whole lot easier to cope with bouts of dyskinesia or off periods, speech problems, etc. if most of the work is done behind the scenes. I am also blessed with a library director who has offered to do whatever is needed to help me continue working. But I know she is a rarity. One of my friends, Peggy Willocks, has compiled a very helpful list of practical suggestions from PWP who have been through the process of applying for disability (in the U.S.) She gave permission for it to be reposted on PIEN. Linda ------------------------------------------ WADING THROUGH THE DISABILITY FILING PROCESS --compiled by Peggy Willocks This list of tips for wading through the Social Security Disability Income (SSDI) process has been compiled from ideas offered by people with Parkinson’s Disease who have been through it and/or have personal, independent expertise. In addition, these tips have been culled from many, many hours of reading and studying suggestions from online and personal sources. It is important to note that each case is different. 1. Keep in mind that SSDI is NOT welfare. It is an earned benefit. if you meet the required criteria for SSDI, you have paid into the system and are entitled to benefits. For a person with Parkinson's Disease to qualify for SSDI benefits, required criteria must be met as listed in section 11.06 of the Social Security 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". For some frequently asked questions about the process, see this online site maintained by a law firm: Fifteen Key Questions About Disability Benefits at http://www.disabilityfacts.com/faqs.html or go to the Social SecurityI website : http://www.ssa.gov/ 2. The process is not a difficult one, but it does take organizational skills, patience,and perseverance. REMEMBER, IT IS NOT “STANDARD” PROCEDURE” for Social Security Disability Insurance (SSDI) TO TURN YOU DOWN THE FIRST TIME. Your first contact will most likely be a telephone interview, so you should make preparations prior to the initiation of the process. If your initial contact is in person, you will be asked if you drove to the interview. 3.Buy a notebook and take notes on every phone conversation you have with doctors, nurses, insurance companies, pharmacists, and especially with any Social Security representatives. Include the day, date, time, the person's name, title, phone number and extension. 4. 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 do not 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 annual evaluations from work which might indicate you are regressing; all insurance reports; reports from any other physicians, (including therapists, foot doctors, chiropractors, a woman’s OB/GYN, urologist, internist) or anyone at all who observes your condition and is able to affirm that you are disabled. 5. ASSUME THAT SOCIAL SECURITY WILL MISPLACE AT LEAST ONE DOCUMENT. The Social Security representatives you will personally with are generally polite and professional, but they are dealing with mounds of paperwork. They can use all the help that you can provide. Keep a copy of everything that leaves your hands. Do not assume you will get anything back. 6. Send everything by registered mail and get a receipt. If a Social Security office is near you, personally deliver the forms. Have them date and sign your copy. This often saves time lost from having to start all over after several months of paperwork. Keep meticulous records in order to respond intelligently to a denial of receipt of a report . Be specific, such as : “On Friday, August 12 at 8:30 a.m., I handed these papers to Mr. John Doe at his office at 1000 Main Street; and I have his signature in my hand.“ 7. Fill out the forms completely and attach extra sheets, if necessary. Do not limit yourself to the space provided. Emphasize what you CANNOT do - not what you can do. Be ready to describe a typical day and how you occupy your time. Visit this web site http://www.disabilityfacts.com Go to their Home page and click on Social Security Disability Outline for a wealth of information. Ask family and friends what they notice is different about you - what you seem to be struggling with, and how you are getting worse. Take notes. Sometimes observers have insights that you might miss. Describe special tools needed in accomplishing tasks; e.g. using a pencil to be able to hit computer keys, or using bathroom handrails and a shower chair for daily hygiene. 8. Make note of the time it takes you to accomplish everyday tasks, compared to how long the same tasks took before PD. Be specific. For instance, with optimal conditions some can get out of bed and be ready to leave the house in one and one-half hours, but point out how it is never known upon awakening whether or not your movement will be fully functioning, so this could take as long as 3-4 hours. Make an outline of everything you do in a typical day. Be sure to include notes about what you CANNOT do. You will be asked to describe what you do each day. Be prepared and be specific; include an hour-by hour typical day. (For example: 7:30 a.m. – Awaken – take medication – go back to bed until medicine takes effect; 8:00 a.m. – get out of bed and take shower; 9:00 a.m. – fix breakfast, etc.) . 9. You may be asked to see a doctor that Social Security personnel have chosen. Independent examinations might be given, especially if your initial report mentions secondary symptoms; such as: pulled muscles, difficulty focusing thoughts, psychological issues, etc. Such reports will most likely strengthen your case. 10. Sometimes when you call Social Security, you may get different answers to the samequestions. Be sure to keep track and document in your notebook who told you what in your contacts. Call back and talk to another representative to verify an answer. 11. Include all your medical records with your initial application. This could help shorten your processing time. Also, retain a copy of everything sent to Social Security by others on your behalf, so there are no misunderstandings about what is and is not in your file. 12. MEET ALL THE DEADLINES YOU ARE GIVEN! 13. You may be asked to get statements from relatives, co-workers, or friends who can attest to your disabilities. Ask them to be honest and emphasize what you CANNOT do. You will get to choose some of the individuals who will fill out these statements. 14. Call your Social Security office periodically for a status update, especially to ask if all the information they have requested has been received. They don’t have the time to alert you if your doctor or someone else has not sent requested documents, and your file will remain incomplete until the information is received. After checking, you may then follow up with those having delinquent reports urging them to promptly reply. 15.DO NOT BE DISCOURAGED if you are turned down on the initial application and placed on "reconsideration" status. If you are denied approval the first time, the process becomes abruptly fair when you make it to the Hearings level at the Appeals process.The initial Social Security staff is overloaded and bogged down with paperwork. However, at the OHA (Office of Hearings and Appeals) there will be both time and professionalism, medical expertise, concern, compassion and in general, fairness. Hearings are typically low key, always private, relatively informal and non-adversarial - nothing to fear. 16. For your appeals hearing, wear business or business casual clothes. 17. In preparation of your appeals hearing, it is wise to get new letters or narratives from the doctors. Some of your doctors’ statements may be several months old by this time. The more current or up-to-date the statements are, the better. 18. 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. 19. The online site for the Social Security Administration is www.ssa.gov/disability . You can get many of your questions answered at this site. Another excellent site is: www.disabilityfacts.com/resources/outline1.txt 20. There are stories about some candidates applying for disability going to court without medications, etc. This is not necessary, and is, in fact , illegal. Social Security Adminiatration wants to know how you function day-by-day. If you indeed are considerated unreliable in attendance, meeting deadlines, and fluctuate in your ability to be present in your job’s position, there should be no trouble gaining approval with your first application. By Peggy Willocks10/2002 reposted with permission of the author ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn