Joanna Morales is a cancer rights attorney, author, speaker, and CEO of Triage Cancer. Triage Cancer is a national, nonprofit organization that provides education and resources on the entire continuum of cancer survivorship issues for survivors, caregivers, and health care professionals.
Cancer survivors often experience employment challenges while working through treatment, taking time off work, or returning to the workplace. But caregivers face similar challenges. These include potential workplace discrimination because of their caregiving role and trying to balance their time and energy between caregiving and work responsibilities. Caregivers who take extended periods of time off from work can also face issues getting back into the workforce.
However, there are some legal protections and cancer community resources to help caregivers better navigate work and caregiving.
Federal and state fair employment laws
Title I of the federal Americans with Disabilities Act (ADA) provides eligible cancer survivors with protection against discrimination in the workplace and access to reasonable accommodations. Eligible caregivers are also entitled to protection against discrimination in the workplace, but they are not entitled to reasonable accommodations. Even when a caregiver is not entitled to an accommodation, an employer might still be willing to work something out to help an employee.
Most states have laws similar to the ADA, but some are more protective. For example, the state law may cover smaller employers than the ADA. So, caregivers should look at their federal protections as well as the state laws.
Keep in mind, though, the law only provides a minimum of what employers must provide to caregivers. Many employers offer benefits above and beyond what the law requires. Therefore, caregivers should also investigate what their employers might offer them.
Taking time off work
The Family & Medical Leave Act (FMLA) is a federal law that allows employees to take time off from work because of their own serious medical condition; to care for a spouse, a parent, or a child; or for certain military family leave.
The FMLA provides caregivers up to 12 weeks, per year, to care for a family member who has a serious medical condition. While taking leave, an employee’s job and their employer-sponsored health insurance coverage are protected.
Although the FMLA can help caregivers balance job responsibilities and time spent caregiving, people are only able to take time off if they are caring for a spouse, a parent, or a child. The law doesn’t include parents-in-law, grandparents, siblings, aunts, or uncles. However, because of the recent Supreme Court decision in Obergefell, et al. versus Hodges, the FMLA now covers taking time off to care for a same-sex spouse.
Some states have a state law that is similar to the FMLA. A few states have an expanded definition of whom you can care for, some have an expanded definition of what you can take leave for, and some cover smaller employers. Again, caregivers should look at federal laws, state laws, and their employer’s policies.
If you are taking time off work under the FMLA, the leave is unpaid. As a result, many caregivers need to find a way to replace their lost wages. While disability insurance might be an option for cancer survivors, there are only three states that offer state-paid leave programs for caregivers: California, New Jersey, and Rhode Island.
In addition, some state Medicaid programs provide eligible cancer survivors with in-home assistance to help with activities of daily living. Activities can include getting dressed, grocery shopping, cooking, and transportation to medical appointments. These programs have different names in each state, such as In-Home Support Services. Some states allow an individual’s family member to provide the in-home assistance and get paid by the program. Contact your Medicaid program to see if this is an option in your state.
Other practical issues
For caregivers who are trying to balance work and their caregiving responsibilities, other daily activities can become more challenging, such as cooking meals, housekeeping, gardening, taking kids to school, and other activities. These are all tasks that family members and friends may be able to help with, if you ask.
There are also resources and online tools to help. For example, MyLifeLine has a Helping Calendar tool where friends and family can sign up to deliver meals or help with other activities. Cleaning for a Reason is a free housekeeping service for women undergoing cancer treatment.
Because caregiving can take an emotional toll, there is support available for caregivers. For instance, Imerman Angels offers one-on-one support from fellow caregivers, and the Cancer Support Community has online and in-person support resources for caregivers.