Thursday, December 4, 2014

Is "Chemo Brain" a Disability Under the Americans With Disabilities Act (ADA)?

People often report debilitating cognitive issues following treatment for cancer.  I wondered, are there legal protections available to them if they can no longer work?

To find out, I spoke with Joanna Morales, an attorney and the former director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles.
The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.  I hope you find the information helpful.  -- Originally published in 2010 but worth repeating.
Q and A With Joanna Morales

ID) What is the legal standard to qualify for a disability?

JM) To have a disability under the ADA's definition of disability, you have to have a physical or mental impairment that substantially limits major life activities, have a history of an impairment, or be regarded as having an impairment.

Major life activities have traditionally been things like walking, talking, eating, breathing and working. But when the ADA amendments passed in 2008, they specifically delineated some additional major life activities that made it easier for someone with cancer to actually use the ADA's protections.

And those activities include sleeping, concentrating, thinking, communicating and operation of major bodily functions.

So, particularly the concentrating and thinking activities really speak to the side effects from treatment that we often call, "chemo brain."

This really makes it much easier to argue that the effects of chemo brain are substantially limiting major life activities.  That by itself has made it easier for people with cancer to use the ADA's protections.

Now what that means is you really get two types of protections in the employment arena.  One is that you're protected against discrimination.  And two is that you get access to reasonable accommodations. 

ID) What would those accommodations be?

JM) Reasonable accommodations are things that could accommodate you in the workplace if you are experiencing chemo brain.  That might mean having a note taker in a meeting or maybe your employer would buy you a tape recorder so that you can tape record meetings to help you remember what was agreed upon in that meeting.

That might also mean help with organization of your workspace or providing things that are going to make the concentrating piece, or sometimes the memory piece, easier for you in the work environment.  So maybe your employer might provide access to a hand-held electronic device such as a PDA (personal digital assistant) so that you can take notes and have access to your contacts, calendar, and to-do list all in the same place.

So there are lots of pretty simple things that can be reasonable accommodations and can ease your experience with chemo brain and are relatively easy for an employer to provide.

ID) But "chemo brain" may not be severe in every case.

JM) That's correct.  We can never say across the board that everyone who experiences chemo brain has a disability, or even that everyone who has cancer has a disability.  That analysis is always done on a case-by-case basis.  It's how your particular diagnosis is affecting your particular major life activities and whether or not that effect is substantial.

ID) Who makes that evaluation?

JM) Eventually if it were to go to that point, it would be a court. So you would hope that you wouldn't have to go to court to make the argument that you do have a qualifying disability. 

But initially if you're having that conversation with your employer, your employer is going to get that information from your health care team.  All you may need is just a letter from a health care professional that speaks to your particular medical condition and your ability to function in the context of major life activities.

ID) So the employee makes a request for an accommodation.  What happens next?

 JM) Once a request for an accommodation is made, the employer and employee are supposed to engage in what is called the "interactive process," so that there is a discussion about the accommodations that are being requested and if there are perhaps alternative accommodations that would work better.  It's supposed to be a back-and-forth dialogue.  But ultimately the employee is supposed to get an accommodation.

Now if along the way the employee doesn't feel as if he's getting heard, there are different options.  One is mediating with the employer, filing a complaint with the state fair employment agency or the federal Equal Employment Opportunity Commission (EEOC) or pursuing legal representation.  That can be something as simple as a lawyer writing a letter on behalf of the employee, reminding the employer of their obligations under the law and what the employee is asking for, or it can be much more aggressive depending on the circumstances.

ID) What if you just can't work anymore even with accommodations? 

JM) Then disability benefits are a pretty good option if you qualify for them.  There are lots of different types of disability benefits.  There are some states that have state disability insurance programs.  There are employers who offer short and long-term disability insurance plans through your work.  You can also buy your own private short or long-term disability insurance plan.  There are also the two federal long-term disability insurance plans available through the Social Security Administration: Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI).

ID) What are the qualifications for each one?
 
The qualifications for each are very different. In California, for example, the California State Disability Insurance (SDI) plan has the lowest standard of disability.  You just have to have a medical condition that is keeping you out of work at least eight days.  That's probably the simplest definition of disability.

For SSI and SSDI, you must have a disability that's expected to last longer than a year and is keeping you from substantial gainful activity. 

And then for private plans, whether they are something you purchase yourself, or are purchased through an employer, the contract is going to define disability and the terms of the policy.

ID) What are the specific disability benefits for each program?

It depends on the program.  In California, SDI will pay approximately 55% of your income while you were working.  It's a formula.  They look back over a certain number of quarters of what you were making and then it's 55% of that amount.

Then there are the two federal long-term programs.  SSI is a flat monthly rate and SSDI pays benefits based on what you have paid into the Social Security system over your work history. 

ID) What if you don't work?  Perhaps you're retired or you're a stay-at-home parent where functioning at home is difficult.  What then?

JM) If you aren't working, but are in a situation where you are experiencing chemo brain and maybe other long-term side effects from treatment such as fatigue or depression you may qualify for other assistance programs.  Getting assistance around the house, whether it be paying bills or daily chores, can bring up a number of different areas of the law.  So if it's financial management, perhaps you would want to consider a power of attorney for financial affairs.  If it's to keep track of the day-to-day things, you may be able to qualify for in-home support services, depending on your income and whether you qualify for that program.

ID) Where does that assistance come from?

In-Home Support Services (IHSS) is a program related to Medicaid (Medi-Cal in California) that is available in some states (contact the Cancer Legal Resource Center for state information).  And it's specifically available to assist people who would prefer to stay in their own home, rather than be forced into moving to an institutional environment like a nursing home.  And they can have someone come into their home and help them.

IHSS will do an assessment to see what your capacity is and what you need help with and how many hours per week you require assistance, then they come up with a formula and they will pay for part or all of that care.  But you do need to have an income level that qualifies you for the Medicaid program in your state.

To learn more about "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD. and Idelle Davidson, visit www.YourBrainAfterChemo.com or find the book on Amazon

For permission to reprint this article, please send an email to IdelleDavidson@gmail.com.

25 comments:

  1. Very informative. I never would have thought that people with chemobrain could file for disability until I read this. Thanks Idelle!

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  2. This is a fantastic post.

    I was diagnosed with cancer at 27. After treatment I started a job at a small non-profit. Two weeks into the job, I sat down with the Executive Director, clearly and confidently explained that I was a cancer patient (I didn't gush any personal details or even tell them what kind of cancer I had.) I confidently and politely let them know that I would need some reasonable accommodations. I told them very specifically the kinds of help I needed and asked if they would be able to make those accommodations. They said yes.

    I don't think that they actually had to comply with ADA since they were such a small company. However, the benefit to them being such a small company is that they also did not have an HR person, so they didn't really know the law. I sounded so calm, reasonable, and informed that I think it contributed to them being reasonable in return.

    Joanna - Can you talk more about how disability issues might change if you are working for a smaller sized company?

    Thanks,

    Kairol
    http://everythingchangesbook.com/

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  3. Very informative! do you mind if I share this article on my blog and with my members of Parliament here in Canada?

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  4. Tim,
    I just responded to you through your blog.

    All the best,
    Idelle

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  5. Another question for Joanna: One of my readers wants to know in reference to the case above, if you know going into a job interview that you're going to need accommodations, are you obligated to disclose that information to the prospective employer?

    This reader thought there might be an issue of fairness to the employer.

    Thanks!

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  6. Very informative.
    Thanks Idelle
    Bobbi

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  7. Hi Kairol,
    Thank you for your question about how disability issues might change if you are working for a smaller company!

    The size of your employer determines whether or not many laws, including employment and disability protections, apply to your employer. For example, the Americans with Disabilities Act only applies to private employers with 15 or more employees. So it is very important to figure out how each federal and state law applies to your particular situation.

    That is something that we can help with at the CLRC. We can provide information about federal laws, as well as state-specific information.

    Best, Joanna

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  8. Hi Idelle,
    With respect to a decision about when to disclose to a prospective employer that you need an accommodation is a very personal one. Anyone who has questions about this process, factors to take into consideration, and what the law requires, can certainly call the CLRC.
    Blogging about legal issues is challenging, because so often the answer is, "it depends." The answer often hinges on the facts of a specific situation.

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  9. I just stumbled upon this wonderful site and am so glad I did. I finished six treatments of abvd chemo in 4/2009. I am 52 and have had a successful cpa practice for 25 years. Chemo brain has left me unable to concentrate, analyze and effectively communicate with my clients. I have just received a decision of total disability from my private insurance carrier.

    It is such a relief to hear others share their stories and know that you are not alone. When I try to concentrate my brain actully hurts and I feel so much pressure in my head. It is difficult for me to follow instructions, even if written.

    I am wondering if I would qualify for SSDI. What is the definition for substantial gainful activity? Do you find that most individuals with chemo brain qualify and is this something that your organization provides assistance with?

    Thank you so much!

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  10. If you have questions about how to apply for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you can contact the Social Security Administration (SSA) at www.ssa.gov or 800-772-1213.

    This is the SSA's definition of SGA:
    What is Substantial Gainful Activity (SGA)?
    The term “substantial gainful activity” is used to describe a level of work activity and earnings. Work is “substantial” if it involves doing significant physical or mental activities or a combination of both. For work activity to be substantial, it does not need to be performed on a full-time basis. Work activity performed on a part-time basis may also be substantial gainful activity.

    “Gainful” work activity is:
    •Work performed for pay or profit; or
    •Work of a nature generally performed for pay or profit; or
    •Work intended for profit, whether or not a profit is realized.

    The substantial gainful activity threshold for 2010 and 2011, is $1,000 for individuals with disabilities, who are not blind.

    For more information, you can also contact the Cancer Legal Resource Center's national, toll-free Telephone Assistance Line at 866-843-2572. The CLRC can explain the programs available, eligibility guidelines, how to apply, how these programs work with private disability insurance, and provide referrals to Professional Panel attorneys for assistance with appeals.

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  11. Dear Anonymous, I'm glad you found us. You'll find lots of great information and support here.

    And to Joanna Morales at the CLRC, thanks again for sharing your expertise with all of us!

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  12. How does one get an exam to determine if you have chemobrain? Obviously you have to have it documented that they have trouble with memory recall, etc. So would this be a neuropsychologist or neurologist? Would these tests be similar to the tests they use for Alzheimer patients to test various areas of cognitive function?
    thanks,
    Heather Flanagan
    www.mybreastcanceranswers.com

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  13. Dear Heather,
    As I am not a doctor, I can provide limited information on this topic. Idelle is certainly the one with more expertise in this area. I would, however, point you to these websites as good resources: http://www.mayoclinic.com/health/chemo-brain/DS01109 and
    http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain.
    From a legal standpoint, it is not required that you take a particular test or that you receive testing from a particular type of doctor. However, it would probably provide credibility to your test results, if you see a doctor experienced in chemo brain or cognitive issues or take a test that is commonly used in this arena.
    Hope that helps . . .
    Joanna

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  14. chemo brain is real I haven't been able to work or funtion in a proper manor since my treatment.They said I would be fine and it was stress.of course it's stress not knowing what happen to the signal in the brain and why I can't think clearly or hold a train of thought for more that a minute at a time.I also have ptsd from a horrible child hood.they did not do a psch evaulation before.they said I was strong like bull and could handle it.well I couldn't and it is tearing my life apart.

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  15. Does Chemo brain get better after time or does it stay at the level it comes in at. I work with a woman who is having alot of trouble
    with her job requirements. We all just need to know if things will be getting better after a while. Hers is not a job that can be let go without affecting the whole company financially, legally etc.

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  16. Thanks for your question. You don't say how long she has been out of treatment so it's hard to respond but generally people do get better over time. Unfortunately, chemo brain doesn't just affect the person who has gone through cancer (what I call the one-two punch!) but it also affects those who love them and sometimes those who work with them. If you can, cut this person some slack. Good luck.

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  17. Have you found that chemo brain and the possible situation of not returning to work is not fully understood by some oncologists? I've recently had a bizarre experience. My "once" supportive oncologist's office has now become very strange after I was unable to return to work. One of the factors entering into me not returning to work was that my job had been extremely stressful, fast paced, and I was essentially working for 1 1/2 people. A nurse practitioner in the office told me that they have never had a patient like me (who had three rounds of all day chemo treatments three weeks apart and a month of radiation) where they did not return to work. It was obvious she feels uncomfortable in supporting me in my long term disability claim, even though I was approved by the long term disability claim.
    Is this very unusual? I feel as if this clinic is really only set up for my physical needs. Any comments would be wonderful. Thank you.

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  18. Hi, thanks for writing. Not every oncologist and/or their staff fully appreciates that cancer treatment can affect a patient's quality of life. You may want to direct your doctor and nurse practitioner to this blog and our book, "Your Brain After Chemo," where they'll find many examples of the issues people encounter while trying to return to work post chemo.

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    Replies
    1. Great answer! I am 2 years out of a rigorous, one year, multi series, APL Leukemia treatment. I was devastated more by the loss of mental function as anything else. Social interactions became more difficult as it was hard to find words, communicate, and remember thoughts long enough to convey them. It has gotten considerably better, but after returning to school this fall (I am 50), it has become apparent again. I am surprised again at the cognitive change, but encouraged with the past improvements. I feel like I am "learning challenged" now instead of "debilitated" as I did in the beginning. Anyone who is faced with this, should have very open conversations with your medical team. I was/am very blessed with a comprehensive group of professionals that care about my total "wellness".

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    2. Rick, I love hearing that you're back to school at age 50. Research has shown that people who challenge themselves intellectually post-cancer may feel more frustrated cognitively than others who have few interests or stimulating activities in their lives. In other words -- and please excuse the cliche -- no pain, no gain. So I see what you're doing as a good thing. Just like with physical exercise where we work our bodies to get in shape, the more we work our brains, the easier mental tasks become.

      Good luck with your studies. Please let me know how you're doing.

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    3. Thank you for the kind words and support! I certainly found that brain games help considerably.

      One of my nurses showed me a game I remembered from childhood. She laid playing cards face down and I was to flip them over one at a time in two's trying to find a match. If they matched I cleared them; if they did not match, they were turned back over. The effort was to remember where a particular card was until its match appeared then clear them. She started with 4 pairs (sadly, a challenge) and gradually increased the number of overturned cards as my abilities progressed. She started this game and others early in the process, and while it probably didn't change the progress of the changes, I think it allowed me to accept and not be as shocked with what was coming.

      Before treatment, I considered myself "exceptionally sharp" afterwards, I felt foggy, but the limits were't apparent, until challenged, and then what felt merely foggy, fell apart frighteningly. I had been given a puzzle book to work with before treatment, "to pass time". I think now, if not intentional, it created a baseline of sorts, and should be given to all patients before chemo. I am sure some patients would not want to know the extent, but I am fascinated at the changes.

      I have progressed to Lumosity http://www.lumosity.com/, and the Khan Academy https://www.khanacademy.org/ ... and Love Love, them! I felt I was ready to go back to school and have no regrets, but task-time restraints, deadlines, and multitasking pressure have shown a whole other level of change/damage. Like you said, stimulus and challenge point out areas of weakness. The challenge then is to develop a work around or find an exercise to work through it. Your blogs are such wonderful places for patients and caregivers to come and find that they are not alone and that there is hope for the personality and mental changes apparent in their loved ones. I am off now to try some of your other game suggestions!
      Thanks again, Rick

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  19. Rick, the nurse who worked with you with the match-the-card game gets kudos from me. She obviously is aware of, and has empathy for, patients who experience cognitive problems after treatment.

    You've hit on something that I have preached about since I started this blog. When people have a stroke, a team jumps into action to help because they know how important it is to act quickly to mitigate physical and cognitive damage.

    Why are we not treated the same way? There should be programs in place where we are informed prior to treatment about the possibility of cognitive damage. We should be offered consultation with a neuropsychologist to get a baseline and then receive rehabilitation post-treatment, if needed.

    (And a word to those of you reading this post who may know of such programs, please send me info so that I can mention them here.)

    Thanks Rick for writing back and for the links to Lumosity and Khan Academy. I use Lumosity as well and although I know about Khan Academy, because of your post, I signed up and already listened to the lecture on DNA (which I will probably need to listen to a couple more times to really get it!).

    Best always,
    Idelle

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  20. Anyone know what the ruling is for the ADA and having a learning disability due to chemo brain? I am in college, and am hoping that they find out if I can get extra time on tests & such. I never know when chemo brain is going to be at its worst and sometimes it happens during a test, not all the time. I feel like they will say that I may not be able to have it without neurological testing being done. -MC

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  21. Good question, MC. I'd be interested to know parameters as well, and if there are any resources for those affected (especially long-term like me...6 yrs out from treatment) to be tested. I feel like it might not be as useful as if I'd had a baseline to compare it to, but am tired of being told it's age, stress, depression, menopause,etc. It affects me daily, and contributed to the discrimination i experienced prior to losing my job.

    I am completely in agreement with you, Idelle, we should have the same team approach that is afforded stroke patients. Plus being told what to expect should be considered informed consent! They tell you you're going to feel nauseous, lose your hair & have bone pain, but not that you may feel you're losing your mind!? The forgetfulness, confusion, loss of words, multi-tasking skills & ability to process or retain info, becoming easily overwhelmed & unable to follow a conversation might be equally if not more important to know. I may not have chosen to go through with chemo as my oncotype DX test had me right in the middle, and knowing my cognitive skills were threatened- potentially affecting my career which required a high level of functioning & quick thinking -could have helped me avoid job loss which includes losing excellent health insurance benefits, and therefore my entire oncology team & follow-up care.

    I hope all we lost out on helps the next wave of patients receive much more comprehensive & informed care. I may have been blessed with being allowed to survive, but I feel I lost nearly everything else in the process. Almost 7 months after losing my job of 11-plus years, I still cannot find a job, unemployment has run out and I may lose my apartment. I feel ill-equipped to deal with it all when I was once quite the go-getter. This isn't something we survivors should be subject to on top of what we've been through.

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  22. I can surely understand where you are coming from ladies. I too am 55 and out of work and out of unemployment monies. I have worked since I was 17 and still would enjoy working however I just feel afraid of a new job with my abilities going down the drain. My daughter 25 yrs old said to me "mom, I'm afraid that one day I am going to call you and you're not going to know who I am". My husband said "what happened to your superior organizational skills". Yeah, I'd like to know where my brain cells went too! I get very frustrated with my daily life. My mom is 76 now and she told me her brain works better than mine and that I need to forget about a job bcuz I don't have the mental awareness to work anymore. It makes me sad.

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