Preparing For Not Working
Many survivors are able to continue working during and after cancer treatment. Other survivors take time off work during treatment, choose to find a new type of work or are not able to return to work at all. Managing financially during periods when you are not working can be difficult if there is a significant reduction in income. If it appears that there is a possibility in the future that you will not be able to work because of your cancer diagnosis or treatment, take time now to prepare.
Preparing For Not Working: Detailed Information
This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions document for questions to ask and for more resources.
As a cancer survivor, whether you can keep working depends on your treatment and how it specifically affects you. Many survivors are able to continue working during treatment. However, some treatments may require an extended stay in the hospital or result in a major change in your work situation.
Survivors often want to remain employed if it is possible, especially if there is a need to keep health insurance coverage or maintain a certain income. For some, going back to work after cancer treatment becomes a priority. In other cases, survivors decide to change to a part-time work schedule or arrange to work from home for awhile. Others may choose to find a new type of work or may not be able to return to work at all. Because each survivor's experience is different, you will be the one to decide what is best for your situation.
Managing financially during periods when you are not working can be difficult if there is a significant reduction in income. If it appears that there is a possibility in the future that you will not be able to work because of your cancer diagnosis or treatment, take time now to prepare.
This document provides some ideas about how to prepare for the possibility of not being able to work, including:
- Defining your income options if you become disabled
- Understanding employment and benefit protection laws
- Planning for the inability to work in the near or distant future
- Budgeting, debt reduction and insurance issues
- Applying for insurance and disability benefits
What factors are important to prepare for not working?
Consider your specific financial, legal and insurance needs when you begin to prepare for the possibility of not working. Your plans need to cover the possibility of not working for a short period of time, for a lengthy period of time or not returning to work at all.
Start your planning process by assessing the value of your assets, including home equity, retirement accounts and personal savings.
Next, define your options for receiving income if you become disabled, including:
- Whether you are currently covered by short-term and long-term disability insurance through an employer-sponsored plan or through your own private coverage
- Whether it is possible to retire earlier than you had planned and live off of your savings or retirement benefits
- Whether you are able to rely on financial support from your family or friends
- Whether it is possible to apply for disability benefits through a disability income insurance policy or from government-sponsored programs
Next, look into what benefit coverage is likely to be available to you if you become unable to work:
- Review each insurance policy you currently have, including disability, health, life, and property/casualty coverage.
- Look into the possibility of purchasing disability income insurance coverage if you do not already have it.
- Find out about any government programs for which you may qualify.
Employment and Benefit Protection Laws
Understanding the employment and benefit protection laws that exist to provide protection for employees who are disabled is an important part of the planning process. The primary laws include:
- Americans with Disabilities Act (ADA): Provides wide protections to people with disabilities in the workplace and requires that most employers provide reasonable accommodations to qualified individuals.
- Rehabilitation Act of 1973, as amended (Federal Rehabilitation Act): Extends many of the protections of the ADA to employees of the federal government and employers who receive money from the federal government.
- Family and Medical Leave Act (FMLA): Allows eligible employees to take up to 12 weeks of unpaid leave (job and benefits are protected) within a 12-month period to take care of their own health needs or the health needs of certain family members.
- Employee Retirement Income Security Act (ERISA): Prevents employers from firing or discriminating against an employee who exercises any rights provided by an employee benefit plan, including health insurance.
- Consolidated Omnibus Budget Reconciliation Act (COBRA): Allows certain employees to continue their health insurance coverage for a period of time after leaving a job as long as the premiums are paid on time.
- Health Insurance Portability and Accountability Act (HIPAA): Limits the situations in which a health insurance company can refuse coverage of health conditions that started before the health insurance policy took effect (pre-existing conditions).
Extensive information about each of these laws and the answers to common questions are available online and through in-person and telephone contacts with government agencies. The federal government agencies that oversee these laws include the Social Security Administration, the Department of Justice, the Equal Employment Opportunity Commission and the Department of Labor. Keep in mind that the state where you live may have additional protective laws.
Planning for an Inability to Work
The following table provides an overview of areas to consider when planning for the possibility of not being able to work:
Considerations for Preparing for Not Working
in Your Employment Situation
- If there are changes that will help you to continue to do your job, talk with your company's human resources coordinator about the possibility of reasonable accommodation(s) being made in your work situation. For example, a reasonable accommodation might include a change in your work schedule, a different assignment of job duties or an opportunity to work from home for a period of time.
- Talk to your employer about the availability of periodic leave under the Family and Medical Leave Act (FMLA). You may be legally entitled to alter your work schedule so that you can continue to work while treating your condition. You can also continue your health insurance coverage while covered by the FMLA.
- If you are nearing a time when you will not be able to work, talk with your human resources coordinator about your health situation. If you need to stop working, discuss the possibility of returning to the company when your health situation improves.
- Find out what options and benefits will be available to you through your employer during a period when you are unable to work. Know when applications for benefits have to be filed and how long the benefit period will last.
- If you believe that there may be a time when you will no longer be able to perform the required duties of your current job, consider whether it would be possible to move into another position with the same employer that will better meet your health needs.
- Know that discussions regarding your medical condition between you and your employer are generally to be kept confidential, or at a minimum, on a "need to know" basis. They should not be disclosed to your co-workers without your consent. However, any job accommodations you request (such as time off or reassignment) will need to be disclosed to affected managers. In these circumstances, it is often difficult to keep details of your condition completely confidential.
- If it appears that you are no longer able to work at your present place of employment, think about whether a different job with a new employer might be best for you. Consider whether you will qualify for insurance coverage with the new employer.
Health Insurance Coverage
- When you know that you will need to stop working, talk with your human resources coordinator about how this will impact your medical and health benefits.
- Make sure that you have a copy of your health insurance policy. Keep records of all correspondence and documents related to your health insurance coverage.
- Learn as much as you can about how to keep your benefits for as long as possible after you leave your job. Pay your insurance premiums in full and on time so that you do not risk losing coverage.
- Find out about the COBRA coverage that will be offered if you leave your job, as well as whether you will be able to obtain an extension of benefits if needed. If you leave your job, be certain to sign up and pay the COBRA premiums in full and on time as required by your insurance plan.
- Check into ways to extend your COBRA coverage beyond 18 months. Read the information you get from your employer very carefully as there are strict deadlines to follow (typically your Cobra information can be found in your health insurance plan language book).
- Find out if your state offers insurance continuation programs or other ways to keep your health insurance when COBRA is not an option.
- Learn more about the Health Insurance Portability and Accountability Act (HIPAA). This federal law limits the extent to which group health plans can exclude coverage for pre-existing conditions.
- Talk with your human resources coordinator to make certain you understand all of the benefits you have available through your employer. These benefits may include short-term and long-term disability income insurance, dental, vision and long-term care policies.
- Make certain that you are taking advantage of all the benefits that may help you in the future.
- Keep copies of your insurance policies and benefit information for your records. Be sure to ask that specific information about your benefit information be provided to you in written form.
Employer-Sponsored Disability Income Benefits
- Talk with your human resources coordinator to find out how your employer's disability income policy defines "disability." Keep in mind that your physical condition, changes in emotional symptoms (such as depression) or cognitive changes (such as problems with memory, thinking or learning abilities) may be considered to meet the eligibility requirements of the policy. Find out what documentation is needed to prove eligibility for the employer's plan.
- If you have an employer-sponsored disability income insurance policy, you will need to contact your insurance company to request a claim form and begin the application process. A representative from the insurer can answer specific questions you have about the disability plan and the specific eligibility requirements for benefits.
- Find out exactly what type of disability income benefits you have. Understand the differences between short-term disability income and long-term disability income policies.
- Be certain that any disability insurance premiums you must pay are paid in full and on time to avoid losing benefits.
- If you need to stop working, find out if it is possible (and most beneficial) for you to start using disability benefits immediately instead of first using all of your sick leave. There may be certain advantages in doing this that could affect your disability income amount.
- Find out if it is possible that COBRA coverage plus a disability extension can extend your group health coverage for up to 29 months or until Medicare benefits start.
Private (Individual) Disability Income Insurance Benefits
- Learn all you can about your private disability income policy. Find out how the plan defines disability and how to document your condition for your application for benefits. Document physical, emotional and cognitive symptoms for consideration to meet the eligibility requirements of the policy. Talk with your health care provider about keeping a record of these symptoms.
- Decide what would be the best time for you to apply for benefits. Know what you will have to do to document your disability and the reasons you need disability income benefits.
- If you have a private disability income insurance policy, you will need to contact your insurance company to request a claim form and begin the application process. A representative from the insurer can answer specific questions you have about the disability plan and the specific eligibility requirements for benefits.
- Pay your disability insurance policy premiums on time and in full to avoid losing coverage. Some policies may waive premiums if you begin receiving benefits under the policy. However, do not stop making payments until you receive notification in writing to do so from the insurer.
- Determine whether it would be best to go straight from full-time employment to total disability to maximize benefits.
Government-Sponsored Disability Income Benefit Programs
- Government-sponsored disability benefits include Social Security Disability Income (SSDI), Supplemental Security Income (SSI), Medicare and Medicaid. The Social Security Administration (SSA) will only approve benefits if you meet the program's definition of total mental or physical disability. The disability must be expected to last for a period of 12 consecutive months or to result in death. You must be unable to do the work you did before and be unable to adjust to other work because of your medical condition.
- When applying for federal or state government disability programs, you must contact the appropriate agency to request an application. A representative from the disability program can answer specific questions you have about the disability plan and the specific eligibility requirements for benefits.
- Know how each of the federal and state government-sponsored disability income programs define "disability." Find out what documentation is needed to be found eligible for both types of programs. Keep track of physical, emotional and cognitive symptoms.
- Determine how much time will be required for the application process. Find out when disability benefit payments will begin if you are found eligible.
- Complete application forms and collect the required medical documentation in advance so that everything you need is ready when you decide to submit your application for benefits.
- If you are denied benefits, find out why and what the appeal process is. Your health care provider may be able to help you with the necessary medical documentation for an appeal . You may also want to seek legal representation to help with the appeal process.
- If an appeal for disability benefits becomes necessary, be sure to provide the required information and follow all established timelines.
- Once approved for SSDI you may attempt to return to work at some point while still receiving full benefits. Specifically, you can apply to the SSA for a participation in a program (Ticket to Work) that allows for a trial work period within a specified period.
- Make sure that all of your legal documents, including your will and advance financial and medical directives, are valid and up-to-date. If you have not yet created a will or advance directives, take steps to create them as soon as possible.
- Give copies of your legal documents to people you trust, including your attorney.
- Review your medical records to be certain they are correct and complete. The information the doctor provides about how your medical condition affects your ability to work or not work will be critical in terms of your eligibility for disability benefits.
Other Income Sources
- Personal savings, retirement funds and your investments are examples of other income sources.
- Keep in mind any potential tax consequences connected with retirement plans and investment accounts.
- Consider whether there are family and/or friends who will be able to provide you financial assistance or support during a period of time when you are unable to work.
- If there is a need for immediate income, find out if there are ways that existing retirement plans or life insurance policies can be converted into income before you reach retirement.
- Review your current financial situation to see if there are ways to save money and budget for future needs. Take steps to increase your income and decrease your debt and expenses.
- Consider adding credit disability insurance to credit card accounts if it appears that you may experience a time when you cannot work.
Life Insurance Benefits
- Keep life insurance coverage if you have it. In addition to being of benefit to your beneficiaries, some types of coverage may be converted into income in an emergency.
- Pay premiums in full and on time. Keep in mind that if you lose your coverage and have a record of a medical problem, it may be quite difficult and very costly to obtain coverage again.
What does it mean to go on disability?
"Going on disability" means that you are unable to work and are receiving disability income benefits. These benefits may come from an employer-sponsored disability policy, a private disability income insurance policy or through a government-sponsored program. Keep in mind that each insurance policy and the government disability programs have their own definitions about what qualifies as being disabled.
Physical impairments, such as fatigue or chronic pain, may be considered a disabling condition. Other aftereffects such as stress, depression or cognitive changes may also prevent you from being able to work for a period of time. To be eligible for disability benefits, your condition must meet the specific definition used in your policy or by the government program to which you are applying.
The following types of insurance providers may have different requirements to qualify for benefits:
- Employer-sponsored disability policies
- Federally-mandated FMLA and ADA laws
- Government-sponsored benefits, such as SSI and SSDI
- Private (individual) disability insurance policies
- State leave laws
What can a survivor do to prepare to apply for disability benefits?
The following steps will help you prepare to apply for disability benefits:
- Read each disability policy or government summary carefully and understand their terms before you apply for benefits. This will help you prepare to present your case for eligibility.
- Obtain a copy of the "Listing of Impairments" from the SSA to learn more about what is necessary to qualify for disability through government-sponsored programs. The SSA Web site also provides information about the medical evidence that is required to be eligible for government benefits.
- Keep a journal of any unusual physical, emotional and cognitive changes. Make notes of how your symptoms affect your work and any activities of daily living.
- Tell the members of your health care team about the specific symptoms you are experiencing and how they are affecting your work and personal life. Also, ask them to note this information in your medical records as this will usually be considered at the time you apply for benefits.
- Before applying for disability, talk with your doctor to find out if he or she will support your application for benefits. Evidence of your disability is required from a doctor when you apply for disability benefits, whether from a private insurance company, the SSA or another government agency. Consider your doctor's opinion and recommendations about this matter. If you and your doctor do not agree, you can consider additional medical opinions.
- Discuss your application for disability benefits with your health care team. Your doctor or other team member (such as an occupational or physical therapist) may have specific ideas about accommodations that could help you continue to work. If there are no recommendations, ask your doctor for a written statement of his or her opinion about why you are not able to work at this time. This type of documentation is typically very helpful during the process of applying for benefits.
- Request copies of your medical records periodically (there may be a charge for the copies). Keep in mind that under your state's laws there may be limitations on what you are allowed to see.
- If you become disabled and do have a premium waiver included in your disability income insurance policy, continue to pay the full premiums on time. In order to avoid having your policy canceled, do not stop making your premium payments until you receive a written notice from the insurer directing you to do so.
- Remember to keep good records of all the correspondence and telephone conversations that occur between you and the insurance company. This documentation will be useful in the event of any future questions or disputes.
After you are found eligible to receive disability income insurance benefits, you should continue to receive the benefits as long as you are disabled. Your case will be reviewed periodically during the time you are receiving benefits because the insurer will need to verify that you are still disabled and continue to need benefits. Disability benefits will usually end if you decide to go back to work or if the medical team and your insurer believe that your health has improved to the point where you are no longer disabled.
This document was produced in collaboration with:
David S. Landay, Esq., author of Be Prepared: The Complete Financial, Legal and Practical Guide for Living with Cancer, HIV and Other Life-Challenging Conditions.
"Will I Be Able to Work During Treatment?" Cancer.org. 2006. American Cancer Society. 3 May 2006.
Landay, David S. Be Prepared: The Complete Financial, Legal and Practical Guide to Living with Cancer, HIV and Other Life-Challenging Conditions. New York: St. Martin's Press, 1998.
Petersen, David. Seminar: Financial Planning for People with HIV/AIDS. New York, 1994.
Simon, Ellen. "The Business of Life: Working With Cancer." ABC News.com. 2006. ABC News Internet Ventures. 3 May 2006.
Social Security Administration, Social Security Online. Disability Planner, 15 December 2005, and SSA Publication No. 05-10029, Disability Benefits. January 2006.
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Preparing for Not Working: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information.
Prepare a budget to decrease your expenses if it appears that your work situation or income is likely to change. You may also want to do a second budget based on estimates of your future income and expenses. If it is possible for you to increase your income, consider that possibility as well.
Assess your current and anticipated medical expenses, including COBRA or other insurance premiums, medical co-payments and deductibles.
Review your current insurance policies (such as medical, short-term and long-term disability income) and determine what you can do to maintain your coverage. Understand potential tax ramifications when reviewing retirement plans and investment accounts.
Talk with your human resources coordinator about employer-sponsored benefits to be certain that you are taking full advantage of coverage that is available to you.
Keep a journal of your contacts and steps taken, as well as copies of your paperwork and applications.
Talk with other cancer survivors who may have had to stop working. They can provide both emotional support and guidance for your decisions.
Ask yourself the following questions about your disability benefit status:
- What disability benefits (employer-sponsored, private and government-sponsored) will I be eligible for?
- How long will benefits last?
- Are there deadlines that apply to obtaining any of the benefits?
- When do I qualify for my employer's health insurance plan and for how long?
- How will my assets affect eligibility for government programs?
- Will I be able to return to my present job at the end of the leave?
- Would unemployment benefits apply to my case?
- Am I certain that my plans would not leave a gap in health insurance coverage before Medicare would start?
- Does a state or federal law provide for continued benefits during my medical leave?
Talk with your doctors to find out whether there will be support of your application for disability benefits. If there is support, be certain that the medical evidence for your claim is documented by your doctor(s). Consider asking questions about the following issues:
- Does the doctor think disability leave from work is medically needed?
- What length of medical leave is desirable or necessary?
- Could a change in job duties or work be helpful for your health situation?
- Does the doctor think you will meet the SSA definition of disability in the near (or distant) future?
Check the Social Security Administration (SSA) Web site. The SSA provides very detailed information called the Listing of Impairments and Evidence Requirements on their Web site (www.ssa.gov). You can learn about eligibility for their disability programs: SSI, SSDI, Medicare and Medicaid. There is also a full description of the application and determination processes.
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