Work accommodations and disability benefits

Balancing breast cancer care and your job may seem like an impossible task. Some choose to work through treatment because they want to – and many because they have to. Staying employed helps you feel in touch with your life before breast cancer. And in most cases, continuing to work is the best way to keep health insurance coverage.

Adjusting your work schedule around your treatments and medical appointments while managing side effects can be difficult, but there are resources to help.

For those unable to work during treatment, there are programs available to help maintain an income and health insurance coverage. Be sure to speak to a social worker or patient navigator at your cancer center to learn about programs in your state. Contacting your elected representatives is another good way to learn about financial assistance programs that you may not have known about. Here are some of the options.

Taking time off

Employee benefits like sick leave, vacation days, and personal days are available for some people. Consider using them for treatment and recovery. Plan ahead to schedule appointments, remembering to leave a few days for times you are too tired or sick to work. Talk with your human resources department about exceptions that may allow coworkers to share sick time with you.

Under the Americans With Disabilities Act, people with disabilities are entitled to reasonable accommodations that may include adjusting schedules or working remotely. Consider what appointments and needs you may address through such adjustments and when you might need or prefer to take time off.

Americans With Disabilities Act

The Americans with Disabilities Act (ADA) was signed into law in 1990 to protect people with disabilities from discrimination, including discrimination in the workplace. If you have a disability — legally defined as a physical or mental impairment that substantially limits one or more major life activities — but are still able to perform the necessary tasks of your job, you may be eligible for some protections under the ADA. People who work for a government agency or a private employer with 15 or more employees and have a qualifying disability are eligible under ADA to reasonable accommodations that allow you to perform the key tasks for your job. Among the most common accommodations people request are

• adjusted work schedule or shortened hours
• time off for treatment
• adjustments to your workstation
• moving non-essential tasks to other employees
• working remotely
• use of employer equipment to communicate with your doctors

Your employer may not agree on what counts as a reasonable accommodation. When requesting accommodations, be prepared to discuss why your requests are important and have alternative requests ready. For example, if you are told that you cannot perform your job remotely, you may ask for different hours that better line up with when you feel well or allow you to leave for afternoon appointments.

State or local laws may also protect you, including when your employer has fewer than 15 employees. For more information and resources, visit the Job Accommodations Network.

Family and Medical Leave Act

The Family and Medical Leave Act (FMLA) allows up to 12 weeks of unpaid leave per year for a serious medical condition, for the birth of a child, or to care for a family member without losing your job or health insurance benefits. To be eligible, you must

• have worked for your employer for at least 12 months total over the last 7 years, and
• worked at least 1,250 hours during the last 12 months prior to the start of the leave, and
• work for an employer that has at least 50 employees at your workplace or within 75 miles

All public agencies, as well as private sector employers with 50 or more employees, must comply with FMLA.

Close family members may also be eligible for FMLA protection if they take leave to be a caregiver for you. This can be a spouse, child, or parent, but they must meet the same employment requirements.

FMLA leave can be taken in blocks of time or all at once. The law requires you to make reasonable efforts to give your employer advance notice. Speak with your healthcare team and consider how much time you may need for treatment and recovery. Note that you will need to share basic information about your medical condition with your supervisor or human resources representative to request FMLA leave. But you do not need to disclose your diagnosis or any additional information that you don’t feel comfortable sharing.

Employee assistance programs

Many employers offer employee assistance programs to help deal with personal problems that may affect work performance, such as emotional or financial concerns. Services are usually free and may extend to family members. Talk with your human resources representative to find out if benefits are available.

Continuing benefits if you lose your job or leave school

If a time comes when you have to leave your job or school, you lose your job, or you graduate and no longer have access to employer- or school-sponsored health insurance, paying for medical care can become difficult. Continuing your coverage ensures you will get timely care. Here are some programs to help maintain your coverage.

COBRA

The Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that allows you and your family to continue employer-based group insurance on a temporary basis, in most cases up to 18 to 36 months. To extend coverage through COBRA, you have to pay the full cost of the health insurance plan yourself. This can be less expensive than purchasing comparable individual insurance plans, and significantly less expensive than paying for breast cancer treatment out-of-pocket.

People are able to maintain health insurance coverage through COBRA when they lose their job or are no longer eligible for employer-sponsored health insurance because of reduced work hours. The plan may cover family members if they were covered by the employer's health insurance plan.

For more information, contact the Employee Benefits Security Administration of the U.S. Department of Labor.

Health insurance marketplaces

Losing coverage qualifies you for a special enrollment period, no matter what time of year it is, to enroll in a new health insurance plan. Online health insurance marketplaces opened under the Patient Protection and Affordable Care Act, also known as the ACA or Obamacare, allow people to shop for and compare available plans in your state and purchase a plan that is right for you.

At healthcare.gov you can access the health insurance marketplace for your state. There you will see plans categorized by the cost of a monthly premium and how much of your healthcare costs the government expects it will cover. You will also be able to see if you qualify for financial assistance, based on your income, to pay for insurance purchased through the marketplace.

Young adults under age 26

People age 26 or younger can be covered by their parents’ health insurance plan, even they lose their job or leave school for any reason. This was a provision included in ACA.

Disability benefits

If breast cancer or treatment causes you to miss work for an extended period, you may be eligible for disability benefits, either through a private insurance policy you are already enrolled in or through a government program.

When filing for disability, gather as much information as possible about your diagnosis, how it keeps you from performing work, and how long you expect to be out of work. Talk to your doctor about your breast cancer treatment plan, including side effects and recovery time, so you know whether you can work with reasonable accommodations or it makes more sense to file for short-term disability, typically lasting under a year, or long-term disability, lasting a year or longer.

Employer-sponsored disability insurance

Disability insurance is part of the benefits package from some employers. Employer-sponsored disability insurance plans may replace 50 to 90 percent of a person's income. How much it pays, the length of time you are covered, the waiting period before benefits kick in, and other features are set by the particular policy. Request a copy of your disability policy from your employer, and review it carefully.

It's important to try to understand what benefits are available, what information you need to apply, and how your insurance interacts with other programs such as Social Security Disability Insurance. If your company has short-term and long-term disability insurance, it is helpful to know how long you expect to be out of work and how to apply for the appropriate coverage.

Social Security Disability Insurance

Work requirements for Social Security Disability Insurance (SSDI) are based on a credit system that takes into account age, lifetime work history, and recent work history:

• having worked for a combined 5 of the last 10 years
• having worked fairly regularly through adult life, and
• having been out of work or are expected out of work for at least 12 months because of a medical condition that meets the Social Security Administration’s definition of a disability

The application process usually takes 3 to 5 months and in some cases may take longer, so apply as soon as you are unable to work due to your medical condition.

If you are approved, you will not receive benefits until the sixth month of full disability. Some states offer short-term disability plans to cover the first 6 months without Social Security payments. If your application is denied, you may appeal the decision.

After two years on SSDI, Americans are automatically eligible for health coverage through Medicare, but must continue to maintain their own health care coverage until then. With COBRA, contact the plan administrator to find out if your coverage can be extended further because of your disability.

People able to return to work may withdraw an SSDI application. If after some time on SSDI you want to try working again, contact the agency about programs that may allow you to do so without endangering your coverage.

SSDI waiting periods

The 5-month waiting period before people receive SSDI benefits and the 2-year waiting period on SSDI before becoming eligible for Medicare coverage have been challenged by metastatic breast cancer and other advocates and lawmakers as arbitrary and harmful to people who are unable to work due to illness or injury. Several bills have been introduced in Congress in recent years that seek to shorten or eliminate these waiting periods for some or all applicants.

• The Metastatic Breast Cancer Access to Care Act, introduced in 2021, would exempt people with metastatic breast cancer from these waiting periods.
• The Stop the Wait Act was introduced in 2019 and again in 2022. It would phase out the 5-month waiting period for SSDI over 5 years, and for people who are unable to afford insurance, it would eliminate the 2-year waiting period for Medicare coverage.
• The Immediate Access for the Terminally Ill Act, introduced in 2022, would give people with a life expectancy of less than 5 years the choice between getting the full benefit after the existing waiting period or getting a reduced benefit — 93 percent of the total — with no waiting period.
• Social Security 2100: A Sacred Trust would make a number of changes to Social Security, including the elimination of the 5-month waiting period for SSDI benefits.

Supplemental Security Income

People may be eligible for Supplemental Security Income (SSI) cash benefits who have not worked long enough or did not contribute to Social Security and have limited income and very little savings.

• In most states, people who receive SSI are eligible for Medicaid.
• In some states, application to SSI doubles as an application for food assistance programs.
• Many states offer supplemental payments to SSI to certain eligible beneficiaries.

To check your eligibility for SSDI or SSI, use the Benefit Eligibility Screening Tool.

State disability insurance

Some states offer short-term state disability insurance funded by deductions from paychecks. Details and coverage vary by state.