Self-Advocacy for Nurses with Mental Health Disabilities
Knowing your rights and options—and even more important, how to advocate for them—can help you break through the barriers on your path to career success.
Nurse practitioner George Copeland, MSN, NP-C, NRCME, is at the top of his profession. He’s been a nurse for 25 years, has earned advanced degrees and certifications, has his own family practice in southeast Florida, and teaches part-time at a community college.
Yet achieving a successful nursing career wasn’t always easy for Copeland, who was diagnosed with bipolar disorder in 1981. Like many new RN graduates, he started off working in the traditional hospital setting. But he quickly realized that he couldn’t handle the constant pressure of shift work.
“I tried, but I cannot work in that setting,” he explains. “I can’t take that particular kind of stress. Stress is the number one trigger for people with bipolar disorder. That’s why I went back to school to become a nurse practitioner so that I could work at my own pace and at what I wanted to do.”
“The Stigma Is Real”
It’s impossible to make generalizations about nurses and nursing students who are living with mental health disabilities, because the term encompasses such a broad range of conditions—including bipolar disorder, schizophrenia, depression, post-traumatic stress disorder, anxiety disorders, obsessive-compulsive disorder, attention-deficit/hyperactivity disorder, and more.
But this often-unrecognized population of minority nurses does have one thing in common. All too frequently, they face formidable barriers on the path to career success in nursing, from self-doubt and stigma to bias and outright discrimination in education, licensing, and employment. That’s in spite of the fact that the Americans with Disabilities Act (ADA) has been the law of the land since 1990 and will celebrate its 25th anniversary this year.
“Nurses with mental health challenges are struggling, and the stigma is real,” says Donna Maheady, EdD, ARNP, founder and president of ExceptionalNurse.com, an online resource network for nurses and students with disabilities. “Often they are very hesitant to ask for accommodations [under the ADA], or to come out in public as needing help, because of the fear of potential discrimination. They’re scared silent.”
Researcher Leslie Neal-Boylan, PhD, RN, CRRN, APRN, FNP-BC, dean of the University of Wisconsin Oshkosh College of Nursing and author of Nurses with Disabilities: Professional Issues and Job Retention, has documented ample evidence that disability-based discrimination is alive and well in the nursing profession.
“Many administrators don’t seem to understand that they’re really leaving themselves open to legal action,” she says. “The nurse develops a disability, or reveals it, and then the discrimination begins—the assumptions that these nurses can’t do the things they’re supposed to do, and that people will be uncomfortable around them.”
But even though a surprising number of nursing gatekeepers still seem to be clueless about their obligations under antidiscrimination laws, that doesn’t mean you have to be. If you’re a nurse or student with a mental health disability, your most effective success strategy is to actively be your own best advocate.
“It’s very important for nurses with any kind of disability to know their rights going in, rather than feeling vulnerable and being afraid to make waves,” says Karen McCulloh, BS, RN, co-founder and co-director of the National Organization of Nurses with Disabilities (NOND). “But not all of them do, and not all of them are good self-advocates.”
Do’s and Don’ts of Disclosure
Because chronic mental health conditions are “invisible disabilities,” your biggest self-advocacy decision is whether or not to disclose your disability to potential or current employers, says Robin Jones, MPA, COTA/L, ROH, project director and principal investigator for the University of Illinois at Chicago’s Great Lakes Disability and Business Technical Assistance Center and an instructor in the university’s Department on Disability and Human Development.
First, be aware of what the law says about your disclosure rights. According to the Boston University Center for Psychiatric Rehabilitation, a research and service organization dedicated to improving the lives of people with psychiatric disabilities, “Under the ADA, a person with a disability can choose to disclose at any time, and is not required to disclose at all unless s/he wants to request an accommodation or wants other protection under the law.”
The pros and cons of the decision to disclose must be weighed very carefully, because disclosure can be a double-edged sword. If you know that you’ll need the employer to provide accommodations that will help level the playing field for you, then you must disclose. But the unfortunate reality is that bringing your “hidden” disability out into the open may result in discrimination.
If you decide that the benefits outweigh the risks, then when, what, and how much should you disclose?
“The general consensus is to disclose as little as possible. Disclose only as much as you need to get the support you need,” Maheady advises. “If you’re talking with your co-workers, you don’t have to go into every detail of how long you’ve been in therapy and what meds you’re on. That kind of information should be shared only with the designated people in the organization whom you’d request accommodations from, such as the human resources or equal employment opportunity departments.”
It’s also important to know that you don’t necessarily have to make your disclosure immediately. “The whole issue of when to disclose is totally based on when you believe you need to ask for an accommodation,” says Jones. “You have no obligation to disclose until that time.”
Adds McCulloh, “Sometimes when you start a job, you don’t think you’re going to need an accommodation, but you may end up needing one after all. So if you need to disclose later, you can. I know that some employers are not pleased about that. But you do have the right to do that.”
Still, many experts recommend that it’s usually better to tell the employer up front. This not only establishes your legal rights from day one but also increases your chances for success by enabling you to receive accommodations right from the start. Furthermore, if you don’t disclose but later experience problems on the job as a result of your condition, such as a bad performance review, employers are less likely to be sympathetic—and the ADA may not protect you—if you suddenly pick that time to reveal that you have a psychiatric disability.
Early disclosure makes good sense for nursing students, too. “From my standpoint as an instructor, I would say the earlier the better, so that I can make accommodations for that student at my end,” says Patricia Giannelli, DNP, APRN, FNP-BC, PMHCNS-BC, ACNS-BC, assistant professor at Quinnipiac University School of Nursing in North Haven, Connecticut. “In our program, we always encourage students with disabilities to let us know as soon as possible, because we want them to succeed and to have all the tools they need.”
Know the Law(s)
Knowledge is power. That’s why another key self-advocacy strategy is to make sure you’re thoroughly knowledgeable about all the various disability rights laws that apply to you. You may find that you’re protected by more laws than you thought.
At the federal level, nurses who work at, or are applying for jobs at, private health care facilities with 15 or more employees are covered by Titles I and III of the ADA. If you’re a nursing student, or a nurse who works for a governmental or federally funded employer, such as a VA hospital, you’re covered under Title II of the ADA and Section 504 of the Rehabilitation Act of 1973.
Both laws protect people with disabilities from discrimination and entitle them to receive “reasonable accommodations” that will help ensure that they can perform the essential functions of the job or education program. For example, says Copeland, “When I was in nursing school, I had problems with not being able to concentrate. So I went to the Office of Students with Disabilities and asked for a quiet place to take exams, and extra time to take them. They gave that to me and they also gave me free counseling.”
Next, you need to be well-informed about what kinds of accommodation options you have the right to ask for. The federal Job Accommodation Network’s 2013 report, Accommodation and Compliance Series—Nurses with Disabilities, provides some examples of reasonable workplace adjustments a nurse with a mental health disability could request, including:
• Reduced distractions in the work environment, such as a quiet place to chart;
• Being able to take breaks or time off to see your therapist, talk to your therapist on the phone, or give yourself some downtime to relieve stress;
• More flexible scheduling, such as being able to work a shorter shift or one that’s less demanding and stressful;
• Modifications in the way you’re managed, such as having your supervisor provide to-do lists, written rather than verbal instructions (or vice versa), reminders about upcoming deadlines, and more frequent feedback about your performance.
In addition, the ADA Amendments Act of 2008 clarifies and expands the definition of “disability” in a way that’s especially beneficial for people living with chronic mental health conditions. The Amendments stipulate that “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”
In other words, Jones explains, “You don’t have to always be exhibiting the limitations of your mental health disability to be covered under the ADA. For example, a nurse may be doing fine without any accommodations but then suddenly starts having problems as a result of switching to a new medication. That’s an episodic situation in which the nurse would be entitled to receive a temporary, short-term accommodation.”
Federal protection for working nurses doesn’t end with the ADA. “Many nurses with disabilities don’t know that they can, for instance, take time off under the Family and Medical Leave Act if they need to leave work to go to a medical appointment [or if they need to be hospitalized],” Neal-Boylan says.
And don’t forget about state and local equal opportunity laws. “Many state laws provide greater protection for people with disabilities than the federal laws do,” Jones points out. “For example, if you live in California, you would be much better off pursuing an employment discrimination claim under your state’s civil rights laws than you would under the ADA. It’s just a stronger law.”
Should You File a Complaint?
Being fully aware of your rights as a nurse or student with a mental health disability also means understanding what action you can take if those rights are violated. In cases of obvious discrimination, such as being denied accommodations that would clearly not be an unreasonable burden for the employer or school, or being pushed out of your job or nursing program after disclosing your disability, knowing how to stand up for yourself becomes more important than ever.
Filing a discrimination complaint isn’t your only recourse—and it definitely shouldn’t be your first choice. “Try to see if you can get some resolution as close to the fire as possible,” says Maheady. “Is there a leader in the organization whom you can talk with to try to deal with the problem in a more effective way? Could you get a transfer to another unit? You need to explore every possibility for working it out internally.”
But if you’ve exhausted all of your internal resources without getting results, it’s crucial to do your homework about how the complaint process works.
Nursing students should start by reviewing their school’s grievance procedures. If going through the grievance process doesn’t end the discrimination, you can file a formal complaint against the school through the US Department of Education’s Office for Civil Rights (OCR). To find your nearest state or regional OCR, and learn more about how to pursue a complaint, visit www2.ed.gov/ocr. Students also have the option of suing the school directly rather than working with OCR.
Employment discrimination complaints are usually handled by the federal Equal Employment Opportunity Commission (EEOC). Unlike students, working nurses are required by law to file a complaint with the EEOC first before they can take their employer to court. EEOC complaints must be filed within 180 days of the date the discrimination occurred.
After the EEOC reviews your complaint, one of two things can happen. “The EEOC may decide that they will pursue your case against the employer,” says Jones. “Or they can issue a ‘Notice of Right-to-Sue’ letter, which gives you the right to go into the federal court system on your own and pursue the complaint with a private attorney.”
But before you decide to make such a drastic move, sit down and do some soul-searching about this question: Is it worth it?
“Be careful what you wish for,” Maheady cautions. “You have to ask yourself: Is this the hill you want to die on? If you lawyer up, do you think you’re going to be welcomed in that hospital? I’m not saying that suing your employer is never warranted. But I always advise nurses with disabilities to take that step very, very carefully.”
McCulloh agrees. “It’s not an easy process,” she emphasizes. “The right to sue still means that you need to have the financial resources to hire a lawyer, file a case, and take it to court. And it’s not a quick fix. Going through the legal process takes a very long time, which could put you in a situation where you’re not working, and not earning any income, for that entire period.”
Empower Yourself for Success
Ultimately, the most empowering pathway for nurses and students with mental health disabilities is to find positive alternatives that will let you create the best possible working or learning environment for your needs—one that will minimize your triggers and maximize your ability to succeed.
One way to do this is to connect with resource organizations that can provide advice and support—from university or employer disability services offices to peer advocacy groups, such as NOND and ExceptionalNurse.com, where you can network with other nurses who have similar disabilities to learn what’s worked for them. (See “Resources” sidebar.) These support systems can also help you identify employers who are more welcoming to nurses with disabilities because they recognize the value of having a diverse, inclusive, culturally competent nursing staff.
If you can’t change your current working conditions, or if you find that your job is just too stressful even with accommodations, consider following Copeland’s example of pursuing a specialty career niche that will be a better fit for you. For instance, one nurse from the ExceptionalNurse.com community (who asked to remain anonymous) comments: “I have bipolar affective disorder and I work as a clinical documentation improvement specialist. I couldn’t handle [bedside] nursing, but I found another area where I could be successful and use my clinical knowledge.”
Copeland offers this firsthand advice: “Don’t let yourself be defined by the fact that you have a mental health condition. If your goal is to be a nurse, or to be a nurse practitioner or a DNP, don’t let other people tell you that you can’t do that because of your disability. There are so many nurses out there who have multiple disabilities, and yet they’ve proved they can do it.”
