When confronted with a chronic illness like Parkinson’s disease, after the initial shock of diagnosis settles comes the question will I be able to continue to work and for how long? Studies show that one of the biggest factors of loss of employment is depression in PD and along with it goes a decrease in quality of life. Continuing to be productive in society and working has a higher rate of overall life satisfaction along with better life within those who are chronically ill according to a recent study on the mental health issues that lead Parkinson’s patients to lead the work force.
Thus, deciding to stop ones job is an extremely personal and emotionally charged decision one will ever have to make. If you are like me, your job has helped define who you are. Suddenly stopping ones employment can leave one feeling empty and striped of one’s own identity and wondering aimlessly if not careful. I thought that my identity was tied into my profession – being Dr. De Leon -was all I ever knew- it was hard to adjust to being just me away from my job. Finally, I realized that although my career was my vocation and passion it was only a part -albeit a huge part- of who I was and am as an individual but by no means the entire person, I am still a mom, wife, daughter, friend just as before.
For some not working has never been an acceptable alternative. It may be difficult separating the job from the person at first. However, at times we have no choice but to stop performing the “job” we once enjoyed or were good at. Our bodies demand that we take a time out and our physicians sometimes tell us that if we continue to work we are doing so at the cost of our mental and physical health. Then it is time to step back and make some hard decisions.
The question becomes: to work part time? Stop? Change jobs? Apply for disability?
In my case, for instance, at the time of my diagnosis the stress of my demanding profession was making my illness worst, I had already tried working part time- a difficult Thing to do when you are a solo practitioner with a thriving practice. I was unable to take all the medications that I needed to function physically and not feel that I was somehow going to be compromised mentally. So, it was decided with the help of my physician and my husband that I should take a time out to let myself heal.
This was not an easy decision to make, by any means, since like most who have worked for years in a profession have invested more than time and effort but actually invested their lives, sweat and dreams in a career; to then be asked to give it up or walk away can break your heart!
As a doctor and as a patient, I have experienced unfortunately the slowness and sometimes unfairness of the system in providing help and disability to those that truly needed it. I have had ALS and Cancer patients who even on their last stage of their illness were denied help despite the severity and finality of their disease. Other times help was delayed so long that they end up without benefits or received them as they were on their death bed. In these cases, having a lawyer to advocate for your rights would be most beneficial.
It is usually when patients are sickest and weakest that they have the least amount of energy to go through the system. Applying for disability I think is a little game of wills and persistence. In my experience it seems that almost 1/2 of the patients get denied right from the start and have to be persistent in reapplying. What happens initially, I think, as it did a close friend of mine and many others like her….is that most of us who suddenly become ill do not like to give in to the illness and will strive to make it work for as long as possible until we can no longer keep doing our jobs then apply for disability or assistance to be met with denial when there is financial and physical hardship. Therein lies the problem with the current system; it is as if they punish people who earnestly try to continue making a living despite the illness or physical disability or impediments. The current system rewards those that anticipate or somehow plan to be “disabled” and don’t really put much effort into continuing to work with an illness. This is a very difficult thing to grasp. The system is broken and in desperate need of repair! (but more on that topic another day) when applying for disability whether it be through private insurance or social security, they expect the person making application to show extensive documentation of gradual decline both on skills and in wages…
Therefore, the key to getting disability efficiently is documentation :
DOCUMENT! DOCUMENT!
This starts as soon as you are diagnosed! Even long before you think about applying for disability or ceasing work!! (You almost have to assume that you will need to stop working and will need assistance at some point.) Especially important to write down how ADL’s (activities of daily living) are impacted – as soon as you are diagnosed start writing down how your life is impacted. What you can’t and can do. Download a form from the www.parkinsonsaction.org website which will help you and your physician keep track and document important changes. This form is not admissible to SSI or other insurances but will serve as a guide. You may keep one for your records and have another put into your permanent record.
The form includes 4 parts: section I- motor impairments such as difficulty walking; section II-physical impairments such as having to urinate frequently or having double vision; section III-non-motor impairments like trouble concentrating, staying on task, memory problems fatigue and anxiety; section IV- additional physician comments as within all above sections physician can make comments.
Even when you think everything is settled and have professional insurance that’s no guarantee as it happened to a friend of mine because 1) most insurances expect a date of start of illness and a foreseeable date when illness resolves- they have a hard time or are unwilling to understand that chronic illness by definition have no date of improvement! 2) Some insurances may even try to argue that problem like PD is hereditary or familial problem. These cases may require a lawyer!
There are 4 disability benefit program that can help you will unable to work:
Short-term disability insurance
Long-term disability insurance
Social security disability insurance
Supplemental security home – designed for people with limited income and resources
Talk to your employer about changes in duties- doing repetitive or single task are best for pd patients. Don’t forget to document when and whom you talk to. It is important to understand application rules before applying. Don’t be afraid to ask questions of your employer or the human resources office of your work or even of your insurance company before you decide to apply for disability.
Be informed!! This will help avoid many headaches … Also, remember that usually by time you are in need of disability is usually because you have reached your limit of your physical and mental capabilities which may make the process that much more painful. Therefore, if you are not up to the challenge alone, make sure you take a friend or relative who can advocate for you or get a lawyer.
You can apply for SSDI- in 4 ways:
- Online @ www.ssa.gov
- In person at your local Social security office
- By phone to your local Social security office
- By phone @ (800)772-1213
http://www.ssa.gov/disability/disability_starter_kits.htm#sb=1
- Science News (Nov 2014): study finds that mental health issues lead people with Parkinson’s to leave the workforce.” PDF http://www.pdf.org/en/science_news/release/pr_1415296989
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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com
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