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Living with PNH: Understanding The Americans with Disabilities Act, for Patients

Learn about the Americans with Disabilities Act and how it applies to patients.  Attorney Chris Mills shares his expertise in this episode.

Podcast Series: 
Living with PNH
Transcript: 

Leigh Clark:    Hi, everyone. Welcome to the Living with PNH podcast. I'm Leigh Clark, Director of Patient Services. This podcast is being brought to you by an educational grant from Novartis. The information you are about to hear is for informational purposes only and may not be considered legal advice. Each individual circumstances vary, and you should consult with an attorney about your specific circumstances. Today we're going to be talking about the Americans with Disabilities Act with attorney Christopher Mills.  Hi, Chris. Thanks for joining us today.
Chris Mills:    Hi, Leigh. Thanks for having me.
Leigh Clark:    Thank you so much. What is the American with Disabilities Act, or most commonly known as ADA?
Chris Mills:    So the ADA is, like you said, the Americans with Disabilities Act of 1990. It's a federal law, and it was mandated in 2008 to provide some expanded rights for individuals with disabilities. And ADA covers a lot of things, uh, like education and building access, et cetera, but I think we're just going to talk about the employment aspects of it today.
Leigh Clark:    Uh, Chris, who qualifies for ADA?
Chris Mills:    So there is, uh, an employer requirement and an employee requirement. So the employer has to have 15 employees to be covered and also, all state and federal and local governments are covered by the ADA. For the employee, the test is you must be a qualified person with a disability. So, this is not a concrete test, you know, where you just sort of check the box, we have to examine whether you're a qualified person and whether you have a disability.
    To determine whether you have a disability, the most common test is, do you have a physical or mental impairment that substantially limits one or more major life activities? So again, not a concrete test but the, the key terms are substantially limits and major life activity. And substantially limits means something, you know, serious but less than severe or prevented, meaning you don't have to be completely prevented from doing something or severely prevented, just... you know, but, but substantially. And it is intended to be construed broadly, but not every impairment is a disability under the ADA.
    In terms of major life activities, this is pretty broad. So the, the law calls out things like caring for yourself, seeing, hearing, eating, sleeping, uh, you know, speaking, breathing. And the law was amended, like I said, in 2008 to include even more things like bodily functions, which could include maybe, uh, like your immune system and cell growth. So, you know, for people with PNH, I think it's, uh, especially, something more than just a mild case of it, I think there's strong arguments that they would be substantially limited in some major life activity.
    But going back to the first part of this, we also talked about being qualified. So, no matter what, you still have to be able to do the job and you have to have the education, experience, skill, et cetera, necessary to do the job, um, e- either with or without what we call a reasonable accommodation. So if you meet all of the above, that you have a disability and, um, you are qualified to do the job with a reasonable accommodation, then the employer must give you a reasonable accommodation for your disability.
Leigh Clark:    Chris, what are reasonable accommodations under ADA?
Chris Mills:    So, there's several, um, and really depends on the circumstances. But the bottom line is it's the modification of a job or an employment practice or an aspect of your work environment that makes it possible to do the job with the disability. So, you know, making a facility wheelchair accessible, uh, modifying a work schedule for someone who has, you know, periodic doctor's appointments, things like that, are accommodations under the ADA.
    For PNH patients, I think we might think about things like, I said, doctor's appointments, you know, modifying your schedule for doctor's appointments or perhaps modifying a schedule or providing leave for treatment, periodic breaks or perhaps some private rest area to rest or take medication. Um, sometimes we talk about redistributing certain tasks if they're marginal and that doesn't impact substantially impact performing your job, possibly reassigning to another position.
    I think one thing that's often on people's minds, especially in today's world, is working at home. You know, can you get that as reasonable accommodation? The answer is possibly. It's not a 100% guarantee that you'd be provided that, and before the pandemic, I would say it was more of a stretch. But I think in today's world, especially if your employer allows other people to work from home or the... during the pandemic successfully piloted work-from-home practices, I think you have a stronger case. You know, if you needed to work from home for, uh, immunity reasons or, you know, to avoid commuting, things like that, um, I think, I think it's... you'd have a strong case for it. Again, though, it's not guaranteed.
Leigh Clark:    Chris, what are considered undue hardships under ADA?
Chris Mills:    So, so an undue hardship is, um, an instance where we're talking about an undue hardship on the employer. So, a reasonable accommodation that you're asking for, if it's an undue hardship on the employer, they don't have to do it. And, again, not a concrete test here, but what the law looks at is, you know, is there significant difficulty or expense for the employer to provide the accommodation? Would it cost so much money that, looking at the size of the employer and, uh, all aspects of, of what we're talking about, is, is it just too much, uh, for them to provide? So there are cases where it is. You know, you... maybe you have a 15-person employer and they simply can't give you a different position, right, because it would require them to hire a whole other person to do your job. Um, maybe something like that would be considered significant difficulty. But, it has to be significant, not just a minor annoyance for the employer.
Leigh Clark:    How does an individual request an accommodation?
Chris Mills:    So there's no magic words here or under the law. Your employer may have a process, uh, for asking for something like this, and you might want to check your handbook, your employee handbook if you have one about asking for an accommodation. Otherwise, you can simply go to your manager or to HR and express your need for, uh, for some kind of accommodation. I would say, you know, this is something you want to plan out and think about. You don't have to go to your employer and give your whole medical history, um, unless you want to, but you don't have to. And I think you just need to go and express that you have a con- diagnosed condition, and that you believe you need an accommodation. And I think it's best when you go to have a plan.
    So think about what kind of accommodation you would need. You know, do you need the intermittent leave allowance? Do you need the right to work from home? What is it you need? So think about that before going to HR or your boss.
Leigh Clark:    Chris, is it helpful to have, like, documentation from like a physician stating, um, what your condition is and how it affects you in, uh, your work?
Chris Mills:    So, your employer can ask for that, and it's certainly helpful to have it. Um, again, you don't have to provide your whole history here. Uh, so if you have something from your doctor saying you have a diagnosed condition that impacts, you know, your immune system, something like that, you could maybe leave it at that level and not provide every detail about your medical history. But it's always useful to have the documentation. I would wait till your employer asks for it before providing it.
Leigh Clark:    What options are available should a request for an accommodation be denied?
Chris Mills:    So this is overseen by the Equal Employment Opportunity Commission, the EEOC. And if you think, you know, you're going to have to try and enforce your rights here, this is definitely something you want to go to a lawyer quickly with because there are limitations, in some cases, some very short time limitations on filing some kind of complaint. So, uh, immediately... If you're denied and you think you're gonna have to fight about it with your employer, you know, I, I would talk to a lawyer immediately.
Leigh Clark:    What else should PNH patients know about ADA?
Chris Mills:    So a couple of things. I, I think just like we talk about, an employer may actually request documentation because, I think as everyone listening knows, PNH may not be obvious to everyone else, you know, in terms of symptoms and impact, right? It, it may be something, uh, that you're experiencing fatigue and, you know, immune issues, but that's not observable to others. So sometimes, you know, you get employer pushback and you just want to be prepared to talk about that and provide the documentation you need to provide to your employer. Um, again, if they ask for it, and you don't have to provide excruciating detail.
    I would also mention, um, changing jobs. So sometimes people need to look for new jobs or change jobs or they want to change jobs but they are getting an accommodation from their employer. And I, I just encourage people to think carefully about whether, you know, it's do they want to change jobs during a period in their life when they have a, a diagnosed condition. And if their employer is being reasonable about it, you know, that's a valuable thing, right? So if you're changing jobs or considering it, think about that.
    Also, if you're changing jobs or you are applying for a new job with a medical condition, um, you wanna think about what you do and don't have to disclose during that process. And there's a lot of details to that, so I would... I'm not gonna talk about them here, but there's a good resource online. The EEOC has a guide called Cancer in the Workplace and the ADA, and a lot of the questions and answers in there would apply to, uh, bone marrow failure diseases, I think, as well.
Leigh Clark:    Thank you so much, Chris for sharing your time and your expertise with all of us today. If you'd like to learn more about ADA, please visit our website, www.aamds.org. Under the Education tab, you will find a recorded webinar about ADA along with downloadable print information. While you're on our website, please check out the PNH Toolkit. This toolkit was designed to help you learn more about PNH and managing your healthcare. Please remember, the information provided in this podcast was informational purposes only and may not be considered legal advice. Each individual circumstances vary, and you should consult with an attorney about your specific circumstances. Thank you for listening.

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