Living With Early Onset Parkinson's — Disability
For people with Parkinson's, time is often one of the most challenging aspects of applying for and awaiting an award of Social Security Disability Insurance (SSDI).
Are you working now, but worried about becoming unable to work in the future? Have you already applied for Social Security Disability Benefits? You may have heard stories even warnings that make you hesitant to apply or appeal a previous determination?
Pursuing disability benefits is a cumbersome process, one that more often than not takes considerable time, patience, and persistence. Do your homework! The more you can learn ahead of time about common mistakes, the more likely you are to avoid them and make what can be a frustrating and time-consuming process an easier one.
Submitting the most comprehensive application possible the first time you apply, and doing some financial planning/budgeting before you even begin the process, is advisable. Newly proposed legislation has the potential to reduce the amount of time and/or number of appeals people with Parkinson's disease typically encounter. For more than 20 years the Social Security Administration's definition of Parkinson's disease has included only the primary motor symptoms of the disease. It is, however, the many non-motor symptoms that often cause a person to be unable to work.
While there are certain aspects of the Social Security application and appeal process over which you have no control (such as your state or jurisdiction's case backlog), there are others you may well be able to influence to some degree.
WHAT YOU CAN DO ON INITIAL APPLICATION
- File immediately! There is no need to wait until you have exhausted short-term or long-term disability benefits.
- Consider hiring an attorney who specializes in disability cases. Usually, no fee s charged unless a case is won.
- Consult specialists such as movement disorders specialists, psychiatrists, speech and language pathologists, etc.
- Request a Residual Functional Capacity form from your local Social Security office. It allows your doctor to spell out exactly why your medical problem/symptoms make working at your most recent job, or any former jobs, impossible, and is generally more effective than an independent narrative.
- Include ALL assessments/reports. Even professionals such as physical therapists, who are not considered "acceptable medical sources" by SSA, may help your case, they just won't be given as much weight.
- Submit VERY detailed notes including: frequency, severity, and duration of symptoms, and "functional limitations," (i.e., difficulty performing activities of daily living at home and at work such as getting out of bed in the morning, getting dressed, using a computer, etc.). Ask for feedback from friends, family, or co-workers and include any symptoms they may have noticed (i.e., speech difficulties, problems focusing, etc.).
- Do not focus exclusively on physical impairments. Many claims ultimately win approval by demonstrating a combination of both physical and mental impairments. If you are experiencing symptoms of depression, consult a psychologist of psychiatrist for an evaluation.
- File for spousal and/or children's benefits , if eligible. Visit http://www.ssa.gov/pubs/10085.html for more information.
- Keep copies of everything you send to the Social Security Administration. This is imperative and will help you track the status of your case and replace any lost documentation quickly and easily.
- Regularly call for case updates. Note that it is the Disability Determination Services (DDS) Examiner who is most likely to know the status of your case. Contact your local Social Security Office for the DDS office phone number.
- Appeal within 60 days of receiving a denial notice. Failure to do so is a common "killer" of disability applications. Appeal online and make the process quicker and easier.
- File a "Request for Reconsideration," not a new claim. Although you are not filing a new claim, be sure to update your claim. Submit a new RFC and any new information on your condition, limitations, treatment, etc.
- Send all written documentation via certified mail.
- Consider hiring representation, especially if you have been denied benefits previously.
The Parkinson's Action Network (PAN) has worked closely with the Social Security Administration to update the Parkinson's disease definition to include non-motor symptoms, and new draft regulations are expected soon. PAN is optimistic that by the end of 2010 the SSA will be assessing disability applications based on the new definition. PAN has also created a new form that people with Parkinson's may ask their doctors to complete and include in their medical record. Should they ever apply for disability, the medical record may be able to present a more comprehensive and accurate picture of their PD symptoms and disability. The new form is currently available electronically here: www.parkinsonsaction.org/pdform
In summary, learn as much as you can about this process before you apply. Doing so may allow you to reduce your wait time and make the transition from work to disability quicker and easier for everyone involved.