Many people with a diagnosis such as HIV, a chronic condition that can be progressive in its severity, tend not to look ahead to the possibility of leaving work someday. While this may be emotionally helpful, it can make for a bumpy and stressful time when leaving work becomes necessary.
Preparing to Leave Work
Plan. Once you have a diagnosis or other indication that you may have to stop working at some time in the future, you should do a "Benefit Review" so you will know what benefits are available, what you have to do to become eligible for them, and how much income you will have when you stop working. The earlier in advance you do this review, the greater the possibility of making changes to enhance your benefits when and if you do become disabled. Also, once completed, you will be more comfortable knowing that there is assistance for you when you can no longer work.
If you have benefits through your employer, you should begin first by obtaining a copy of the Summary Plan Descriptions that employers are required to provide all employees. Personnel departments should have them available and you can request them, simply saying something like you are working with a financial planner and he/she needs them. This way, no "red flags" are raised.
Be careful switching to part-time work -- Under the Americans with Disabilities Act (ADA), an employer must make "reasonable accommodation" for your medical condition to help you continue working. In many cases, however, that accommodation is reduced hours, with accompanying reduced pay. If you have a long term disability (LTD) program from work, the disability benefits are tied to what you were earning at the time you stopped work. If you reduce your hours, you'll also reduce your income and that will further reduce any LTD benefits you're eligible for later. If you reduce your hours too much, you may lose eligibility to all your benefits including health insurance.
Be careful how you tell your employer. The best way to tell your employer you have to go on disability is to go to Human Resources and tell them your doctor has directed you to take some time off and ask for the necessary paperwork.
When telling your employer that you are leaving, do not announce that you are leaving permanently and never plan to return, even if that is the case. It is better to preserve your benefits and rights by telling the employer that your doctor is making you take some time off for your medical condition. When asked for how long, you can tell the truth; you don't know for sure -- at least a month or two, no more than twelve weeks, which is how long the employer must save your position and continue your benefits under the Family and Medical Leave Act. The employer will tell you what paperwork is needed to process the absence.
Copy! Copy! Copy! Nothing should leave your hands that you don't have a copy of. Every letter, every completed form, every application. Keep a copy! It is also helpful to copy blank forms before completing them in case there's an error and you need to start over.
Check all paperwork before submitting. Let the forms sit at least overnight and review them again before submitting them. If possible, look them over several times. It is amazing what additional information you will recall and be able to add, especially if your medical condition is one you have had for some time. People frequently forget about symptoms they have when they have lived with them long enough. They also often forget about adjustments and accommodations they have made for their condition over the years.
Don't let small spaces on the forms scare you. I'm convinced some claim forms purposely have a tiny amount of space for answers just to keep you off-balance and encourage you not to say much. I don't know of a single carrier or government agency that won't accept additional sheets of information. Simply label "See attached" in the space on the form, and put your full answer on an attached sheet. Make sure you carefully label the question and answer. Make sure you put your name and Social Security number or claim number at the top of every page of every form.
Don't be too perfect. If you use a computer to complete your forms and they end up looking very "professional," be sure to explain the time and number of sittings you had to spend getting them to look that good. You may even want to describe how many revisions you had to make and who assisted you with the process, if anyone.
Track all documents. Many people send forms and correspondence "Return Receipt Requested." The problem is the signature signed in the mailroom is often unreadable. Sending items Priority Mail allows you to track the packet and having a copy makes it replaceable if lost. When possible, deliver Social Security forms and correspondence to the local Social Security office personally and ask them to date stamp your copy as proof of delivery.
Phone Calls and Follow-Up
Don't sit and wait. Stay involved in the claim process. Contact the analyst and examiner to make sure mailed forms were received. Work with the examiner/analyst and follow up with doctors who haven't submitted their records. This not only reduces the time it takes to process the paperwork, but it helps remind the examiner that you are a person, not just a claim number.
Maintain a phone log. Every time you talk to the insurance company or Social Security or your employer or anyone regarding your benefits, keep a written record of the call. Name, phone number, date and time of call, what was said, outcome or next step and when to follow up again.
Get it in writing. The best record is the written record. What you are told by the insurance company over the phone doesn't mean a thing. If they have to put it in writing, chances are they will make sure they are right before writing it down. Try asking something like, "I have trouble remembering things and this is so complicated. Could you put that in writing and send it to me?"
Talk to the person, not the office. It's easy to picture monsters and ogres working for the companies and squealing with glee when they refuse your claim (and there are enough like that to be really scary), but these people are also human and just trying to do their jobs. Try to be friendly, and business-like. Understand these people are overworked and handle many claims in addition to yours. Stay calm and don't argue.
Be generous with compliments. If the claims representative goes out of his/her way or gives you better than expected service, let them know.
Play dumb. You're much more likely to get the attention and advice of a claims representative by playing the helpless, ill, lost-in-the-system role and admitting they know more than you about the process. Demands, orders, and threats won't help your case move any faster, at least not initially.
Watch what you say on the telephone. When you call an insurance company or Social Security, you often get the recording, "Your call may be monitored or recorded for quality assurance." That means the phone call is being recorded. Watch what you say, and take notes for your own record. There's no point in threatening legal action, but if warranted, get an attorney. Exhaust all internal appeals processes first though.
Double-check what you are told. I'm sorry if this sounds very cynical; I don't mean you should distrust everyone. However, in this case, you can't be too careful. This is your life, your income, your continued health insurance we're talking about, and no one cares about it as much as you do.
People will sometimes give you information off the top of their heads without realizing that the wrong information can cost you money and/or insurance coverage. You're trying to find the answers to surviving in the future; they're trying to get off the phone. It's important that you try to double-check such information.
The process of moving from work to disability is not an easy one. By following these suggestions, you can make the process more organized, less stressful, and easier to follow. It also puts you back in control of the process so you don't feel helpless and at the mercy of the programs you are trying to access.
Oh, and one more thing: do not be afraid to ask for help from family, friends, or a knowledgeable advocate.
Jacques Chambers, C.L.U., is a benefits counselor in private practice with over 35 years experience in health, life and disability insurance and Social Security disability benefits. He can be reached by phone at 323.665.2595, by e-mail at firstname.lastname@example.org, or through his website at www.helpwithbenefits.com.