Managing work and finances after a cancer diagnosis can be enormously challenging for patients, particularly in the midst of treatment. As almost half of Americans receive health insurance through their employers, work and healthcare are closely intertwined for millions of individuals. Stephanie Fajuri, JD, is the Director of the Cancer Legal Resource Center (CLRC), a program designed to support and help educate cancer patients and others about issues such as employment, insurance, government benefits, and medical leave. According to Ms. Fajuri, patients should be aware of their legal rights to better manage these difficult issues and relieve some of the burden on themselves and their families.
Ms. Fajuri’s presentation at the AONN+ Midyear Conference provided some advice and basic legal knowledge that navigators could find helpful for their patients struggling with employment and finances after a cancer diagnosis.
Employment Rights and Responsibilities
The Americans with Disabilities Act (ADA) and Family and Medical Leave Act (FMLA) are federal laws that apply in every state. But Ms. Fajuri noted that employment laws are only a baseline, and many employers can and do provide more benefits to employees than are required by law.
First of all, patients should know that disclosure of a cancer diagnosis is never required (and especially not in a job interview), but there are times when disclosure might be helpful or necessary. If a worker fails to request reasonable accommodations before her performance suffers, legal action cannot be taken against the employer for any repercussions that result from her lapse in performance. Note that employers are required only to negotiate reasonable changes or adjustments; for example, a cashier could not ask to work from home but might reasonably ask for a stool to sit on behind the register.
The ADA prohibits discrimination at all stages of the employment process and applies to state and local governments and employers with 15 or more employees. To be covered by protections of the ADA, a patient must have a “disability” as defined by the ADA, but must also be qualified to perform essential functions of the job. For example, it would not be considered discriminatory if someone with a background in law wasn’t hired for a job in nursing.
Another federal law that provides protection for workers is the FMLA. It provides 12 weeks of unpaid leave, during which the worker’s job and health benefits are protected, for the worker’s own serious health condition or to take care of a seriously ill parent, spouse, or child. Ms. Fajuri stressed the importance of understanding that this protected leave is unpaid, but noted that it may also apply to some part-time employees.
In addition to the federal laws, there are applicable state laws, many of which may have a broader definition of “disability” and may apply to smaller employers—those companies with fewer than 15 employees.
Managing Medical Bills, Debt, and Income Replacement
Navigators and patients of-ten discuss financial concerns. “I haven’t talked to a single person dealing with cancer or a serious health condition who is not concerned about their finances,” Ms. Fajuri said.
Maintaining a position when possible can help patients avoid some financial problems, but patients should be thorough when researching what their employer offers regarding paid or unpaid leave policies. Awareness of eligibility for disability benefits and timelines for applying is crucial. “We have so many people who wait far too long to apply for benefits,” she noted.
Importantly, many patients are unaware that medical bills can actually be negotiated. Ms. Fajuri explained that staff members at CLRC talk to people who go into serious credit card debt or set up an account with GoFundMe because they’re putting medical bills on their credit cards or raising money for a bill for which they probably could have negotiated a decrease.
A number of long- and short-term income replacement programs are available. If a patient is already sick, approval for private disability insurance is not likely, but Social Security Disability Insurance (SSDI; based on how much a person has paid into the system) and Supplemental Security Income (SSI; for individuals with very low income) may be options. Additionally, some states offer state disability insurance and paid family leave for caregivers.
Ms. Fajuri offered several practical tips that navigators and patients should be aware of. For example, denials of claims are very common, so if patients apply for SSDI or SSI and get denied, they should appeal, not reapply, she urged. If patients submit a new application, they essentially go to the back of the line.
She also recommended that patients open their mail. This may seem like a simple suggestion, but opening the mail and reviewing bills can be a daunting experience for many patients. Patients and caregivers should be vigilant about opening mail, she stressed. “If they don’t, they might not know treatment was denied or the Social Security Administration is giving them 60 days to appeal their denial.”
Navigators might remind patients that it is critical for them to be cautious of predatory lending, to be informed of their options, and to maximize their insurance coverage before looking into alternative sources of income.
Finally, patients should prioritize their debts and expenses. Keep in mind that many facilities and medical providers will negotiate decreases or set up a payment plan, but failing to pay rent or a mortgage will likely result in eviction, regardless of whether a patient has cancer. “There’s more wiggle room with a medical bill than with a mortgage,” Ms. Fajuri explained. “Having a safe place to live should be prioritized.”
The CLRC is a national organization with a mission to provide information and resources on cancer-related legal issues to patients, survivors, caregivers, healthcare professionals, employers, and others coping with the disease.
Free information and assistance for patients and families nationwide can be found at www.clrcintake.org or by calling 866-THE-CLRC (866-843-2572). Note: The CLRC does not provide direct legal advice; individuals who need these services should consult a lawyer.