Read an Excerpt
The Complete Financial, Legal, and Practical Guide for Living with a Life-Challenging Condition
By David S. Landay
St. Martin's Press Copyright © 1998 David S. Landay
All rights reserved.
In a Nutshell
Stanley T. was an executive at a publishing company when he was diagnosed with leukemia. He had excellent health coverage through work, but was concerned about what would happen if he let them know about his diagnosis. He wondered what his rights would be if the chemotherapy interfered with his work.
Linda L. was just three weeks past her breast cancer operation when she decided to examine her job and financial affairs. She took the job ten years ago because "it was the first one that came along." Is this what she wanted to do with the rest of her life? What would happen if the cancer reappeared? How would she cope financially? And what would happen to her children if she died?
Neil S. knew there were times when AIDS affected his brain and his thought processes. How could he be sure that his treatment wishes were carried out, and was it too late to write a will?
Introduction to Chapter One
There is no beginning, middle, or end to successfully living with a life-challenging condition. Being diagnosed with a life-challenging condition affects all aspects of your life.
This book provides the tools to help you successfully enter and navigate the maze of issues raised by your condition, so you don't have to waste precious time taking wrong turns and going up blind alleys. How you use the tools is up to you. There is no right or wrong way to use them, only the way that suits you.
This chapter provides a condensed version of the material that will be presented in much greater detail in the succeeding chapters. As you read these pages, don't be daunted by the number of concepts and facts packed tightly together. Take your time. Stop and digest the ideas presented. Take several days to read this chapter if necessary, noting subjects of particular interest to read more about in the text.
Once a year, or more often if there are any changes in your health or financial condition, revisit this text. Like your health, the other aspects of your financial, legal, and personal life also need periodic checkups.
The key to living successfully with a life-challenging condition is to strike the critical balance between expecting the best and preparing for the worst. Embracing these two complementary points of view is the first step in facing an uncertain future.
Expect the best. This empowering positive attitude provides a framework for getting the most out of each day. According to the most successful survivors, expecting the best means
learning to "live with" your condition instead of possibly "dying of" it.
recognizing that no shame is attached to any health or financial condition and no blame.
accepting responsibility for making the final decisions about your health care and treatment. After all, it's your life that's at stake.
realizing that you can't go it alone and that you don't have to. Friends, family, and professional advisers, including your physicians, are part of a care team that you captain.
balancing the emotional, legal, and financial pros and cons when thinking about who, what, when, and how to inform about your condition.
understanding that bouts of depression, fear, or anxiety are normal and also that you, the people close to you, and your caregivers have options for coping with them.
appreciating the importance of living in the moment.
remembering how precious each moment of daily life is — a concept I refer to as Life Units — and reexamining your priorities to reflect that value.
taking time to relax, every day.
realizing it is never too late to change your attitude.
Prepare for the worst. This separates an informed positive attitude from simple blind hope. It requires an honesty that will enable you to prepare for the worst in order to maintain the kind of health care and environment that will encourage you to expect the best. At first, this kind of preparation may sound impossible. I assure you it is not. In fact, you have already started to make progress by picking up this book.
Every day you live past a diagnosis makes you a survivor. Traditional and alternative health professionals already have a vast arsenal of drugs and treatments available — and medical advances are being made almost daily. Still, it is possible that you may be unable to earn an income by working, you may need care, you may become incapacitated — unable to manage the tasks of daily living much less your financial affairs — and you may die.
If you plan ahead, you will be able to take maximum advantage of the many alternatives available to keep your life manageable. You will also realize that lifetime goals you may have previously abandoned may still be within your grasp.
Access to the medical system. I suggest entering the maze by examining the most important asset you have, whether on your own or through a spouse or significant other — your health insurance coverage. It provides access to medical care without draining all your assets or even bankrupting you. If you don't have it, you should do everything you can to get it.
To provide a map that can be used regardless of your situation, Be Prepared focuses first on income, then expenses, then new uses of assets that will affect both, and finally on other important subjects that will impact you. Health coverage is summarized below. However, when you finish reading this chapter, I suggest you immediately skip to the health coverage discussion in chapters 14 and 15.
Your finances. The next step is to look at the reality of your health condition and what statistics indicate may occur. Don't focus on it as if this is what will happen to you: this kind of information is statistical, and statistics are based on large numbers of people rather than the individual, history rather than today, and do not take into account continuing medical advances.
With this information you can prepare for the possible financial effects of your condition, since finances are key to continuing your lifestyle and realizing your professional and personal dreams.
Start by putting together snapshots of where you are today, beginning with what you own (net worth) and your income and expenses (cash flow). To complete the picture, project what your finances would be like if you became disabled, and on the other hand, what you will need to obtain your goals. If you are married or in a stable relationship, create these pictures for the two of you.
If necessary at this point, just make a guesstimate of the numbers, and only examine the parts of your finances that most concern you. When you have the time, you can use the worksheets in chapter 4 to refine the numbers.
Please don't focus on a shortfall. The remaining parts of the text provide the steps to take, including ideas for increasing your income, minimizing your cash outlay, and obtaining new sources of cash.
Take a few minutes to request information about employment and Social Security benefits to which you may be entitled, as well as your insurance and credit information on file at central bureaus. It will be important to you, and requesting it now will avoid frustrating delays when you can least afford them. The contact information is in chapter 3.
Journal and Letter of Instructions. You should consider a few other steps at this point. Again, they don't need to be done right now. However, as you will see, the results will be helpful in many different contexts. Perhaps a friend or family member could do one or all of these chores for you.
First, start keeping a daily journal that describes your symptoms, if any, and how they affect you and your work. Include positive and negative drug and treatment reactions. Be specific. If you don't keep the journal daily, at least note significant changes.
It would also be beneficial to create a Letter of Instructions — a brief outline of the steps necessary to maintain your personal and business affairs. Include as much detail as you can, from paying important bills to plumbing and other home-repair contact people. This list will help keep you organized, ensure important coverages don't lapse, and save you time in the future by providing a map for others to follow in case you travel or become incapacitated.
This is also a good time to be sure your filing systems and valuable documents are in order.
Legal protections. * Federal and state laws prohibit discrimination against you due to your health condition. The protections start from the moment you inquire about a job and continue through your working days. Employment protections even extend to your leaving a job on disability. Under the federal program COBRA, and similar state programs, if you have health insurance through work, you are permitted to continue your health coverage and to take other advantageous steps after you leave. You're even protected if you take a new job as long as there is not too large a gap between the termination of your old health coverage and the start of your new job and coverage.
Employment. For many of us, our job is our primary source of income. If you work, use the worksheet starting here to calculate all the time and expenses that relate to your job (including all the time and money you spend socially that is work-related as well as diversions you need to help you cope with the stress). The odds are you're going to be surprised by the result, what I refer to as True Net Pay. Rather than accepting the status quo, now is the time to work to increase your True Net Pay and/or reduce the hours devoted to work so you'll have them to pursue whatever you find fulfilling in life. Perhaps there is someone at work you can tell about your condition who can help maximize your income. If you are up to it, this may be a time to change jobs — or even careers. Of course, you should think carefully about all the pros and cons before leaving your current job and taking a new one. Keeping your health insurance has to be a major consideration as are any other benefits a new employer may offer. Whether you leave your job for another one or go onto disability, set a wish list of what you want from your current employer, prioritize your wishes, and negotiate for them.
If you are currently unable to work, there may be government programs to pay the costs of retraining to help you return to your old job or to start a new one.
Private and government disability income. In the event you need to stop work because of your condition ("disability"), there are three potential sources of income: private disability income insurance, state disability insurance programs, and Social Security.
Private disability income insurance replaces part of the monthly work income that may be lost. If you don't already have disability income insurance, it is unlikely that you will be able to obtain it now on your own, but you may still obtain this coverage as a member of a group, such as through an employer. Employers might also provide short-term income as part of a salary-continuation program.
As of this writing, California, Hawaii, New Jersey, New York, Rhode Island, and Puerto Rico have state-mandated short-term disability insurance programs.
Social Security provides two income replacement programs if you become disabled. Disability for purposes of these laws basically means you are unable to work in any occupation for which you are suited.
Social Security Disability Insurance (SSD) entitles you to government benefits regardless of the amount of your assets or other income because you paid "premiums" for the coverage in the form of Social Security (FICA) taxes. These taxes must have been paid for a minimum number of calendar quarters for you to qualify for benefits that, in limited circumstances, also cover spouses and children. Benefit payments are not paid until the seventh month after the onset of disability.
Supplemental Security Income (SSI) is intended to provide income replacement and medical care to disabled people with limited income and assets. Certain assets and income are disregarded in determining eligibility. You can collect SSI even if you never paid into Social Security through FICA taxes so long as you are a U.S. citizen or fall into one of several exempt "alien" categories. SSI payments begin immediately upon disability. A person who has a "presumptive disability" doesn't even have to wait for the application to be processed to obtain the first check. Dependent children may also be covered under SSI.
Preparing for the possibility of not being able to work. * Disability does not generally happen overnight. When you stop working usually involves a degree of choice. Starting preparations now ensures your control over the situation if and when it arises. For instance, in your journal, document as they occur developments that may interfere with your ability to do your job. Ask your health professional to enter the notes in your medical file. Also keep a record of positive formal and informal evaluations of your performance. Review your coverages and increase your benefits to the maximum possible. Also, continue or increase contributions to your retirement plans and reduce debt — particularly debt that doesn't have credit life insurance. Look for a mentor at work with whom you can talk and who can help you maximize your benefits, line up your physician's support, and start thinking about what you will do while you're on disability. Since a disabling condition can be emotional as well as physical (or a combination of the two), you can also consider working with a mental health provider who can help define disability when the reality is still questionable.
The timing of when to go on disability involves your health and finances — not morality.
Once you decide to go on disability, understanding how the system works will help you get it right the first time. Only about one-third of SSD applicants are found eligible on submission of their first application. Provide as much of the requested documentation as possible. Complete the forms with a view to satisfying the examiners. If you have to appeal your claim through the Social Security appeals process, using an attorney is strongly recommended.
You will not receive SSD payments until the seventh month after the onset of disability, so start saving money to provide for that period.
While on disability. It is important to continue to keep health, disability, and life insurance policies in force by paying premiums promptly. If investigators check on whether you are still disabled, be guarded but honest with your responses.
* When you become well enough to return to work, take the opportunity to determine what kind of work you want to do with a view to maximizing your True Net Pay and fulfillment. Returning to work will affect benefits such as health insurance and Medicare.
Private disability income policies and Social Security encourage returning to work, even on a trial basis, by making sure your coverage either continues or is immediately reinstated if you stop work again. Programs are available to help you learn new skills or bring old ones up to required current levels. If you're looking for a new job, list your résumé in terms of job experience rather than chronologically — and keep in mind your protections under the Americans with Disabilities Act. Be sure to let Social Security know about any of your work activities.
Retirement planning. * As long as you have a taxable income, it is advisable to continue to invest in retirement accounts. Unless you are at an end stage, you should also continue to plan for retirement. Set goals and look at retirement benefits to which you may be entitled under Social Security and employer-sponsored retirement plans. Consider individual retirement plans.
Just in Case Fund. It is also advisable to do your best to create a "just in case" fund to cover unexpected contingencies, and a cure fund to cover costs of the cure that will hopefully be developed for your condition.
Investments. * For the most part, your investment strategy should be keyed to your projected longevity on a statistical basis. Keep in mind that statistics relate to a large group of people, are historical instead of current, and do not predict an outcome for any particular individual. In setting your strategy, assess the pros and cons of seeking professional advice versus investing on your own.
Factors to consider in making investments are liquidity, risk, return, fees, taxes, and administration.
If your current condition could mean years of health during which continued gainful activity is possible, begin an investment strategy focused on growth — with built-in liquidity — as soon as possible. Your investment plan should be somewhat less risky than that of the average person who does not have a life-challenging condition — and your plan should avoid complicated investments because you need to be able to change strategies quickly.
Excerpted from Be Prepared by David S. Landay. Copyright © 1998 David S. Landay. Excerpted by permission of St. Martin's Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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