For those of you who are considering going on disability or have recently gone on disability, the following information and experiences of another Kennedy's Disease individual might be helpful to you 

All the disability plans I've seen are written for people who have an illness with a sudden onset, or have had some kind of accident, that pinpoints in time when the disability occurred. The plans generally are written with the expectation that the disability will end, allowing the employee to return to work.  Most of the disability benefits literature and application forms are not written for people with progressive illnesses where loss of function is gradual and recovery isn't likely to occur. In
addition, without specific, well-defined cues, those who suffer from progressive illnesses have difficulty deciding when its time to declare oneself "disabled."  I know I did.

The time to go on disability depends on many factors: your determination to continue working, how willing the company is to adapt the work environment to your needs and/or change your job responsibilities, your financial needs, the quality and extent of the disability benefits, etc. I suggest that anyone who has a progressive illness should understand all of the factors and be prepared to review and potentially change one's evaluation should any of the factors change. For example, if your company has been recently acquired or merged with another company, or is modifying its policies, could change your ability to perform your job.

Don't base your decisions only on the benefits literature that the company distributes. Generally it is incomplete and may contain errors. There is an official written document, generally called the Disability Plan. Ask for a copy. Your company is required to give it to you if you ask. It will have information that you otherwise won't know about. Read it thoroughly.  It helps to make a list of all your benefits so you don't forget anything: salary, bonuses, vacation-pay, medical and dental coverage, employee stock purchase plan, 401k, life insurance, pension, stock options, etc. Read all of your benefits literature and plans thoroughly to understand what happens when you go on disability. Some benefits follow the rules for terminated employees. For example, it is likely that you will no longer receive vacation time or bonuses, participate in the employee stock purchase plan, or be allowed to contribute to your 401k. On the other hand, some benefits such as medical and dental coverage and stock options continue with some changes. Your medical and dental coverage may be available to you at employee rates, but be administered as a COBRA plan. Treatment of stock options varies by company, but it is possible that options will continue to vest. Unlike terminated employees who must exercise options within 90 days, employees on long-term disability may have as long as five years to exercise them.

You would think that your Human Resources department would have a handy checklist of what happens to all benefits when an employee goes on disability. My experience is that they don't. Moreover, it was very difficult to find anyone who could answer my questions. My experience is that most HR personnel have little knowledge about disability benefits. Unfortunately, they may try to be helpful and offer their opinions and tell you what they remember. In general, I found that their opinions and memories were incorrect or incomplete. If someone quotes a policy, politely but firmly ask to see that policy in writing. I can't emphasize this point strongly enough. More often than not, what I have been told has often been partially or totally incorrect. Also, expect that while you are on disability, many of your benefits will be administered by organizations outside of your company. Anticipate that they may confuse your plan's benefits with those of other companies they administer. Expect it to take several months to a year to get answers to your questions and to obtain the benefits you are due.

I strongly recommend that you keep a log of all your conversations noting who you talked to, their telephone number, the date, and a summary of what was said. With so many benefits to keep track of with so many people in various organizations, and over such a long period of time, your written record is the best way to ensure that no important issues are forgotten or
overlooked. People will make commitments to get you information and you will need to follow-up with them when they don't. Someone may insist that they have given you the correct information verbally and will not follow up with written documentation. Your only recourse is your written notes. On really important issues, you may want to follow up with a letter summarizing what you were told.

Be patient. Just about every benefit took multiple phone calls over periods of weeks or months to resolve. Finding the right people with the correct information, following up when they haven't met their commitments, and correcting errors, takes a lot of time. However, after six months, just about everything was settled. However, after almost a year, a couple of issues are still unresolved.

Before you announce your intention to go on disability, have a frank conversation with your doctor (preferably someone who understands your disease) about what your intentions are. The initial criteria for disability generally are that you are unable to perform your regular job, or a reasonably similar one, and you and not working at any other job. You need to be clear what your job responsibilities are and how your disease prevents you from fulfilling them. If you decide that you meet the criteria for being disabled, the date of your disability is the date you make this decision. It is not the date you first noticed or documented symptoms.  You and your doctor complete and submit the appropriate paperwork. This paperwork often demands a return-to-work date. For progressive diseases, enter in "never".  If your company demands a specific date, you may enter a review date.

The disability plans I've seen have at least three distinct phases.

The first phase is usually called something like Medical Leave. During this time you typically receive full pay (at least for some portion of the time) and most of your benefits. Typically you use up your sick pay and do not accrue vacation time. The duration of this phase varies by company and can last 1-6 months.

Once the time limit for medical leave has been exceeded, the second phase of disability begins. It typically lasts 12 months and may include the time you were on medical leave. During this time, your pay is reduced according to your plan and you lose other benefits.

The third phase of disability begins after you have been on disability for 12 months. At that time, the criteria for disability change. The criteria at this stage are those used by Social Security. You are disabled if you are unable to perform any job for which you are reasonably qualified by training, education, or experience. You and your doctor will complete another set of paperwork at this time to determine if your disability meets the new criteria. If you qualify for Social Security disability payments, you should meet your company's criteria. This third phase typically lasts until age 65, although the company will periodically review your condition. Of course, disability ends if you begin to work again.

During the second and third phases, disability plans typically pay approximately 60-65% of your base pay. If you don't expect to return to work, you are required to apply for Social Security, and any other, disability benefits you may be entitled to. Most plans reduce the amount they pay you by the amount you receive from other sources, so your total disability pay is usually capped at 60-65%.

It is important that you do apply for all benefits for which you are entitled. If you fail to do so, disability plans generally reduce your pay as if you did receive those benefits, regardless of whether you actually did. Some plans allow (or even require) you to pursue rehabilitative employment while you are on disability. The amount you are allowed to earn, and the
number of hours you are allowed to work, depends on the specific plan. Generally, your disability payment will be reduced by a fraction (usually½) of the amount you earn from your rehabilitative employment. Consequently, you may earn more than 60-65% of your base pay (although never more than 100% of your original base pay). However, the limits for earning income while receiving Social Security are quite low and each company's plan is different. Make sure you understand these rules and limits carefully before pursuing any level of employment while on disability.

Because disability benefits are written around a disabling occurrence, most people don't apply for Social Security right away. However, when you know that you won't be returning to work, as with a progressive illness, you should apply right after you have applied for your company's disability. It takes Social Security a couple of months to research your claim (get reports from your doctors, etc.) and to work through the pile on their desk. After three months I learned that I had been awarded Social Security disability benefits. Apparently receiving benefits with the initial application is rare, so you should not be discouraged if you don't receive it the first time. There is a detailed appeals process and you should ensure that you file on time.

Generally Social Security likes to deposit your payment directly into your bank account. The deposits will be made the same time each month. However, be prepared for a lag of one month to begin receiving your payments. If your Notice of Award states your disability benefit will begin in June, you will receive your first payment in July. However, your company assumes your June Social Security payment was paid to you in June. (No sense arguing with anyone. That's just the way it is). Consequently, you will receive less income the first month of your Social Security Award. You may want to
budget for the reduced income.

To reiterate, your company will reduce its payment to you by the amount you receive from Social Security. Most of your income will be taxable. The extent your Social Security income is taxable depends on your tax bracket. Check whether your company's disability payment is indexed to inflation. If it isn't, your effective payment is less each year. On the other hand, Social Security payments are indexed to inflation. Your disability pay may be reduced by the inflation-adjusted amount or, more typically, by the original amount of your Social Security Award.

For more information click here visit the Social Security Administration web site.