Struggling at Work? You May Qualify for Accommodatons.

MONDAY, OCTOBER 4, 2010


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

In researching and co-authoring "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus," I interviewed countless survivors who reported often debilitating cognitive issues following treatment for cancer.  I wanted to know if there were any legal protections available to them in the workplace, or at home if they could no longer work.

To find out, I spoke with Joanna Morales, an attorney and the director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center andLoyola 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.  -- Idelle Davidson
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), andSupplemental 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.

ID) How can people reach you if they have questions?

JM) People can contact our national, toll-free telephone assistance line at 866-THE-CLRC (866-843-2572) or visit our website at http://www.cancerlegalresourcecenter.org/ for more information about these topics and other cancer-related legal issues.

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, visithttp://www.yourbrainafterchemo.com/ or find the book on Amazon

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

13 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/
    ReplyDelete
  3. Very informative! do you mind if I share this article on my blog and with my members of Parliament here in Canada?
    ReplyDelete
  4. Tim,
    I just responded to you through your blog.

    All the best,
    Idelle
    ReplyDelete
  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!
    ReplyDelete
  6. Very informative.
    Thanks Idelle
    Bobbi
    ReplyDelete
  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
    ReplyDelete
  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.
    ReplyDelete
  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!
    ReplyDelete
  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
    ReplyDelete
  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