1. Keep in mind that 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 Parkinson's 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 organization skills, patience and perseverance.
4. Buy a notebook and take notes on every phone conversation you have with doctors, insurance companies, pharmacists, and especially with any Social Security representatives. Include the day, date, time, the person's name, phone number and extension.
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, anyone at all who observes your condition and can attest that you are disabled.
6. ASSUME THAT SOCIAL SECURITY WILL LOSE AT LEAST ONE DOCUMENT. The SS representatives I dealt with were all polite and professional, but they are dealing with mounds of paperwork. They can use all the help you can give them. Keep a copy of everything that leaves your home. Don't assume you'll get anything back.
7. Send everything by registered mail and get a receipt. If a SS office is near you, deliver the forms in person. Have them date and sign your copy. This saved me from having to start all over after 6 months of paperwork. The SS office said I never filed, but I was able to tell them that on Friday, August 12 at 8:30 a.m. I handed the papers to Mr. John Doe at his office at 1000 Main Street and I have his signature in my hand. Of course, I told them this with a smile to show there were no hard feelings.
8. Fill out the forms 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. Be ready to describe a typical day and how you occupy your time. This web site can help you: 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 different about you - what you seem to be struggling with, how you are getting worse. Take notes. Sometimes they have insights you might miss. Describe special tools you need to accomplish tasks. e.g. a pencil to be able to hit computer keys or a Rotato, my favorite new devise for peeling potatoes. (Don't laugh, this came up in my hearing when the judge asked how much meal preparation I could do.)
9. Make 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 I can
get out of bed and be ready to leave the house in one and one-half hours, but I never know when I wake up whether or not my muscles are fully functioning, so this could take as long as 3-4 hours.
10. One thing that is important to get across is that PD is totally unpredictable. There is no such thing as a typical day. There is no way you can know if you can get to work on time, or know whether you can spend 3 minutes or 3 hours working on a specific task on any given day. You are unemployable because you are unreliable and your work product and attendance can't be depended on.
11. You may be asked to see a doctor that SS has chosen. They give independent examinations but do not make recommendations or give advice to SS. I was also sent for two psychiatric evaluations, which I was told was for my depression at that time. All three doctors were pleasant and objective. Neither psychiatrist understood why I was there. (Although my husband and children had a few ideas!)
12. Don't worry about losing money if the process takes longer than you anticipated. If you are approved you will receive back pay from the time your disability started.
13. 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 can still work.
14. Sometimes when you call SS 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 SS rep to verify an answer. .
15. Include all your medical records with your initial application. This could help
shorten your processing time. Also, retain a copy of everything sent to SS by doctors and anyone else communicating with SS, so there are no misunderstandings about what you can and cannot do.
16. Meet all the deadlines you are given.
17. You may be asked to get statements from relatives or friends. Ask them to be honest and emphasize what you CAN'T do. This isn't the time for them to be diplomatic.
18. If you end up having an administrative hearing, do not worry. I can only speak from my experience, but the judge was considerate and fair. He asked me questions and my representative asked me questions designed to show him the extent of my disability. Also present was a doctor chosen by SS who helped my case immeasurably, even though he was not a neuro or MDS. I was treated very nicely. The judge didn't even use the vocational counselor to find out if there was any work I could do, because he had already decided. Wear business or business casual clothes.
19. For your hearing, it is good to have recent letters or narratives from your doctors. The more up-to-date the better.
20. DO NOT BE DISCOURAGED if you are turned down on the initial application and on "reconsideration". The process becomes abruptly fair when you make it to the Hearings level. Below the Hearings level, the SS staff is overloaded and bogged down with paper work. However, at the OHA (Office of Hearings and Appeals) 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. (Submitted by Pliny, who has done several thousand appeals hearings over 25 years.)
OK, I'm about out of ideas. The web page I gave you has lots of information and aids to preparing your case. You can also go back to the previous forum on SSDI and read about 3 years worth of postings, but I think most of what you will learn is condensed here. Hope this helps.
Posted with permission from Emily2 from Mass General Web Forum