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I just received permission to post an article written for the APDA Young Onset Newsletter, Fall - 2003. I hope you find the information useful. You may reproduce and distribute the article, but be certain to give APDA credit. I hope the format copies correctly. Peggy WADING THROUGH THE DISABILITY FILING PROCESS By Peggy Willocks (a successful applicant) This list of tips has been compiled from the author's experience and hours of research, from ideas offered by people with Parkinson's disease who have been through the process, and from others who have independent expertise. It is important to note, however, that each case is different and that the author of this article is not an attorney. This article therefore should not be construed in any way as legal advice. Consulting with an attorney specializing in disability may be advisable. 1. Keep in mind that SSDI is NOT welfare. It is an earned benefit. If you meet the required criteria and you have paid into the system for the required length of time, you are entitled to benefits. You must show that Parkinson' s (plus any other physical or mental ailments you have) so reduce your functional capacity that you cannot work on a full time competitive basis. You are free to prove that multiple medical conditions (such as depression, sciatica, etc) effect your work capacity and contribute to your disability, instead of trying to make the evidence fit the narrower criteria of Parkinson's disease only. [ADD] However, if your doctor is familiar with the Social Security Listing of Impairments (in particular section 11.06 - Parkinsonian syndrome with the following signs: Significant rigidity, brady kinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station) and your medical findings coincide with listing criteria, it also may be very helpful for the doctor to tell Social Security so. 2. The process is not a difficult one, but it does take organizational skills, patience, and more importantly - perseverance. REMEMBER, IT IS NOT "STANDARD PROCEDURE" FOR THE SOCIAL SECURITY ADMINISTRATION (SSA) TO TURN YOU DOWN THE FIRST TIME. Your first contact will most likely be a telephone interview. Make preparations prior to the initiation of the process. If your initial contact is in person, you should be aware that 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(es). 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. It is much easier when you have collected your medical records as part of your routine visits, but do not delay initial submission of your application while waiting for reports. Follow up persistently with any medical sources, even after applying, until SSA has all your records. Continue to send all medical reports of each doctors visits and a dated list of your medications each time they change. Include relevant reports from any other physicians, (including therapists, foot doctors, chiropractors, OB/GYN, urologists, internist, etc.), and anyone at all who observes your condition and is able to affirm that you are disabled. Submit annual evaluations from work that might indicate you are regressing (such as a lower score on an evaluation and why). 5. Assume that Social Security will misplace at least one document. Social Security representatives 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 that 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, for example: "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 can NOT do - not what you can do; this includes times when your medications do not work, or "off" times. Ask family and friends what they notice that is different about you - what you seem to be struggling with, and any ways in which 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 special mouse to be able to operate your computer, or using bathroom handrails or a shower chair for daily hygiene. 8. Make note of the amount of time it takes you to accomplish everyday tasks, compared to how long the same tasks took before your Parkinson's progressed. Be specific. 9. You will be asked to describe what you do each day and how you occupy your time. Again, 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, etc.) 10. 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 symptom reporting might require additional testing, but the reports will most likely strengthen your case. 11. Sometimes when you call Social Security, you may get different answers to the same question. Be sure to keep track and document in your notebook what person told you what in your contacts. Call back and talk to another representative to verify an answer. 12. Be certain to retain a copy of everything sent to Social Security by you or others on your behalf (when possible), so there are no misunderstandings about what is and is not in your file. 13. MEET ALL THE DEADLINES YOU ARE GIVEN! 14. 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 can NOT do. You will get to choose some of the individuals who will fill out these statements, but it is that person's choice as to whether or not to show you their completed report. 15. 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. Follow up with anyone having a delinquent report. 16. DO NOT BE DISCOURAGED if you are turned down on the initial application. You may request to be placed on "reconsideration" status or request a hearing before an administrative law judge (ALJ). Hearings are typically low-key, always private, relatively informal and non-adversarial . 17. At this point it would be wise to seriously consider hiring an experienced disability lawyer. 18. In preparation of your appeals hearing, it is advisable to get new letters or narratives from your doctors. Some of your doctors' statements may be several months old by this time. The more current or up-to-date the statements, the better. 19. 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. For your appeals hearing, wear business or business-casual clothes. 20. Be honest. Do not exaggerate or understate your impairment. It is not necessary to exaggerate; and is, in fact, illegal and will undermine your credibility and jeopardize your case. If an SSA decision maker decides you are credible, you have gone a long way toward winning your claim. Good luck! Peggy Willocks was diagnosed at age 44. In 1997 she was voted Tennessee Elementary School Principal of the Year. In 1998 she was awarded disability status from SSA. She is currently Tennessee state coordinator for the Parkinson's Action Network (PAN) and received the Louis Fishman Advocacy Award in 2003. ----- Original Message ----- From: "George Docken" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, January 12, 2004 11:26 AM Subject: Re: Light at the End of the Tunnel? > Dear List, I've heard that applicants are rarely approved for > disability on the first attempt and that it is helpful to have an attorney > experienced in disability and retirement issues. Does anyone have > experiences or comments to share. I'm also seeking a referral to such an > attorney in (or near) Minneapolis, Minnesota. Thanks for your help. > -Geo. > > > > > > > Kathleen Cochran <[log in to unmask]> > Sent by: Parkinson's Information Exchange Network > <[log in to unmask]> > 01/11/2004 11:58 AM > Please respond to Parkinson's Information Exchange Network > > > To: [log in to unmask] > cc: > Subject: Re: Light at the End of the Tunnel? > > > In a message dated 1/10/04 3:45:03 AM, [log in to unmask] writes: > > << After 1 year, 5 months, and 25 days of unemployment ... Wait- > ing 1 year and 6 days for approval... Yesterday, I received *the* > call telling me that I had been approved for Social Security Dis- > ability benefits. >> > > Bill, > > Felicitations! Bravo! What a long, hard haul. > > Good luck with your house....hope it all works out for you. Please keep us > posted. > > Best wishes, > Kathleen > > ---------------------------------------------------------------------- > 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