1. Even though the process will be different in other countries, I believe the principles and suggestions will apply to any process.]
2. This is a long article. Consider printing it and filing it with other related information.
Depending upon the type of work you do, at some point you might need to consider retiring because of safety issues and/or inability to perform your assigned tasks.
Social Security – Disability (SS-D) is important to many of us in the United States who are forced to retire early because of health related issues. A few years ago, I wrote a 'guide' for applying for SS-D based upon my experience. Since the guide is twenty pages long, in this post I will try to focus on the ‘key learnings' that might make the process easier for you if you ever need to apply. There is a link to the PDF guide at the bottom of this article.
How SS-D works: It is important that you understand how Social Security defines 'disability'. That is because other programs have different definitions for disability. Some programs pay for partial disability or for short-term disability. Social Security does not. Disability under Social Security is based on your inability to work. You will be considered disabled if you cannot do work you did before and they decide that you cannot adjust to other work because of your medical condition(s). Your disability also must last or be expected to last for at least a year or will result in death.
- Note: Progressive disorders are different and this is why you need to work with your doctor and your Social Security representative in order to explain the gradual and continual loss of certain functions.
Here is how to make the process work for you
I know you can apply on-line, but I do not recommend it. You have a story to tell and someone needs to hear it. For my reasoning, see “Educate the Reviewer” and “Tell your Story” below. You do not want to be a name on a form. You want someone to associate your face, personality, and capabilities with your condition.
A doctor who reviewed disability claims for a Fortune 100 company gave me the following advice on the disability application process.
Start the process early. Do not wait until you are totally disabled before beginning the process.
Be patient. The process takes time. It is not uncommon to wait 90-120 days before hearing the results of the application.
Fill out the forms completely. The disability process is no different from any other application process (e.g., home loan, employment, etc.). Provide explanations for terms used. Leave little to interpretation.
Remove your emotions from the process. Think of it as a business deal – your business. Learn the rules of the game and make the rules work for you. The 'red-tape' and follow-up letters asking for additional information are all part of the game.
Understand how the forms are written. The disability process is written for people with a sudden illness or disability – not for people with progressive illnesses where there is no treatment or cure.
Understand the process. Remember that the Social Security Administration is a government agency. Applications are denied the first time if insufficient information is there to make your case.
Other comments on SS-D
Document everything. The more information and details you can provide up front, the smoother the process will go.
Provide a history of the progression. You have been living with this condition for years. Include falls, injuries, hospitalizations, problems with performing certain tasks, etc.
Educate the reviewer. Do not expect the reviewer to understand Kennedy's Disease or your specific situation. The reviewer can be an excellent advocate if he/she understands Kennedy's Disease and your specific disabilities in regards to work. Give the person all the information they need to understate your condition. As much as possible, relate symptoms and progression to other similar conditions that are more recognizable, i.e., ALS, Muscular Dystrophy, and Huntington’s Disease.
Preparation is the key. The more prepared and organized you are, the better the chance for approval. (For example, I was approved in six weeks)
Make it easy for others. Below are several comments on how to help ease the reviewer (and others) through your disability application process. The easier it is for them, the easier it will be for you, and the better chance for approval.
Employer: Discuss your intentions with Human Resources and your manager or supervisor. Ask for their support. You do not want them to be surprised when a Social Security representative contact them asking for information.
Neurologist: Advise your doctor(s) and his/her staff that you are applying for Social Security-Disability benefits. Ask the doctor(s) for his/her support. Review (preferably in written form) your current symptoms and any health-related issues that affect your ability to perform your current duties.
Initial submission: Provide the reviewer with as much information as possible. The more information the reviewer has to work with initially, the less information he/she has to write off for – meaning a delay in the process. The more information requested by the reviewer, the greater the chance the doctor's office will not be able to find it and/or it will be delayed.
Tell your story: Control the information flow. The most important information should be in the front. Sections should be tabbed and key statements/information highlighted so the reviewer can easily find the critical information he/she needs to make a decision.
Use the 'Supplemental Section' to educate the reviewer: The reviewer probably has never heard of SBMA. Tell them about Kennedy's Disease, its symptoms, its treatment, etc. There are excellent articles on the KDA website and on the internet that explain the disease to a layman.
Provide the information in a 'report' format: Tabbed, with sections, page numbers, a table of contents, etc. - so the reviewer can easily locate the information he/she is looking for. I submitted a three-ring binder. Keep a duplicate three-ring binder of all the submitted information. This will keep all of your information in one place and easy to find.
Review before submitting: Dot the i’s and cross the t’s: Be sure to sign and date all the forms. Have someone else review the submission to make certain they understand it and can find the information needed.
A Few More Suggestions
- If called, refer to the information needed by section and page number so the reviewer can easily find what he/she is looking for.
- Take your binder with you to any reviews or hearing.
- Be patient and responsive to follow-up inquiries by the reviewer.
- Follow-up with your doctor, H.R. and supervisor to insure they provided the requested information. I asked for copies of their submissions and added them to my binder.
Be prepared to provide:
- Your Social Security number and proof of age
- Names, addresses and phone numbers of doctors, hospitals, clinics and institutions that treated you and dates of treatment
- Names of all medications you are taking
- Medical records including test results from your doctors, therapists, hospitals, clinics and caseworkers
- Your work history. A summary of where you worked and the kind of work you did
- A copy of your W-2 Form (Wage and Tax Statement), or, if you are self-employed, your federal tax return for the past year
- Family information including names and dates of marriages and your children’s births.
To learn more about the application process, contact your local Social Security Administration office, by going online to (http://www.ssa.gov/disability/) or, by calling 1-800-772-1213.
The PDF guide I wrote can be found here: https://www.kennedysdisease.org/images/stories/PDFs/Social_Security-Disability.pdf
I hope this brief post helps to explain the process and some key 'learnings' based upon my experience. Should you have additional questions or comments, please don’t hesitate to contact me.
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