Work accommodations and disability insurance and 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 must. Staying employed may help 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, financial navigator, 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 otherwise may not know about.

Taking time off from work

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

Under the Americans with Disabilities Act (ADA), 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 changes and when you might need or prefer to take time off.

Americans with Disabilities Act (ADA)

The ADA protects people with disabilities from discrimination, including discrimination, or unfairness, at work. Disabilities are defined as physical or mental impairments that substantially limit one or more major life activities. If you have a disability, but are still able to do the necessary tasks of your job, you may have some protections under the ADA.

People who work for a government or employment agency, labor or religious organization, or a private employer with 15 or more employees and have a qualifying disability are eligible under ADA to reasonable accommodations that allow them to do the key tasks for their job. Among the most common accommodations people request are:

• Adjusted work schedule or shortened hours
• Time off for treatment
• Changes to their workstation
• Moving nonessential tasks to other employees
• Remote work
• Use of employer equipment to communicate with 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 alternate 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 Accommodation Network.

Family and Medical Leave Act (FMLA)

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, adoption, or foster care placement 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
• Have worked at least 1,250 hours during the last 12 months prior to the start of the leave
• Work for an employer that has at least 50 employees 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 able to get 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.

You will need to share basic information about your medical condition with your supervisor or HR staff to request FMLA leave. But you do not need to share your diagnosis or any extra information that you don’t feel comfortable sharing.

Employee assistance programs

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

Continuing benefits if you lose your job or leave school

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

If you are 26 years old or younger, you can be covered by your parents’ health insurance plan.

Here are some programs that can help you maintain 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 short-term basis. In most cases that means up to 18 to 36 months.

To extend coverage through COBRA, you must pay the full cost of the health insurance plan yourself. You will likely pay more for your health coverage than you did when you worked for your employer. A social worker or financial navigator can help you explore if there is any premium assistance available to you.

People can keep 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.

Keep in mind: If you end COBRA early, you can’t change to a Marketplace plan until the next open enrollment period.

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. Learn more on our page about health insurance options.

Disability insurance and benefits

If breast cancer or treatment causes you to miss work for a long time, 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 doing your work, and how long you expect to be out of work. The disability insurance company will likely require your doctor to complete a form periodically. Talk to your doctor about your treatment plan, including side effects and recovery time. Knowing these things can help you decide if 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 can be part of the benefits package from some employers. Employer-sponsored disability insurance plans may replace 50-90% of a person’s income. How much the insurance pays, the length of time you are covered, the waiting period before benefits kick in, and other features are set by the specific 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 (SSDI).

State disability insurance

Five states offer short-term disability insurance. They are California, Hawaii, New Jersey, New York, and Rhode Island. Puerto Rico also offers short-term disability insurance. Details and coverage vary by state/territory.

Social Security Disability Insurance (SSDI)

Requirements for SSDI are based on a system that considers a person’s last 5 years of work history and being out of work (or expected to be out of work) for at least 1 year due to a disability, as defined by the Social Security Administration (SSA).

The application process usually takes 3 to 5 months and in some cases may take longer, so consider applying as soon as you are unable to work.

If you are approved, you will not receive benefits until the sixth month of full disability. If your application is denied, you may appeal the decision.

After 2 years on SSDI, Americans are eligible for health coverage through Medicare.

Returning to work

If after some time on SSDI you want to try working again:

• Contact SSA about programs that may allow you to do so without risking your health insurance coverage.
• There is a 9-month trial period during which you can still get SSDI and Medicare.
• There is a 3-year extended period of eligibility during which you can still get SSDI if you earn less than a certain amount each month.

More information about returning to work after receiving SSDI is available on the Social Security Administration’s website.

SSDI and metastatic breast cancer: Compassionate Allowances List

Some serious conditions and disabilities, including metastatic breast cancer (MBC), are included on an SSA list of Compassionate Allowances. This means if you have been diagnosed with MBC, the application review process for eligibility for SSDI benefits will be quicker. Keep in mind, compassionate allowances is not a guarantee of approval.

Challenges to 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 (MBC) and other advocates and lawmakers. At least four bills have been introduced in Congress (as of 2024) that aim to shorten or remove these waiting periods for some or all applicants. They are:

• The Metastatic Breast Cancer Access to Care Act would exempt people with MBC from these waiting periods.
• The Stop the Wait Act would phase out waiting periods for people with disabilities.
• The Immediate Access for the Terminally Ill Act would remove waiting periods for people with a life expectancy of less than 5 years.
• The Social Security 2100 Act would make changes to Social Security, including the end of the 5-month waiting period for SSDI benefits.

Supplemental Security Income (SSI)

People may be eligible for Supplemental Security Income (SSI) cash benefits if they have not worked long enough or did not contribute to Social Security and have limited income and very little savings. Other things to know about SSI are:

• In most states, people who receive SSI are eligible for Medicaid.
• People who get SSI benefits are usually also eligible for Supplemental Nutritional Assistance Program (SNAP) benefits.
• Many states offer supplemental payments of SSI to certain beneficiaries (for example, children or spouses).

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