Employment Rights and Disability Insurance

Lack of employment after transplant can create financial hardship for transplant survivors. Learn about programs that can help.

Presenter:  Jamie Ledezma ESQ., Triage Cancer

This is a video of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium

Presentation is 41:14 min, followed by 15:30 min of Q & A


A change in employment or work status can create hardship for patients after transplant. Federal and state laws prohibit discrimination based on your medical history. Suplemental social security income (SSI) and social security disability income (SSDI) can help while a patient is unable to work.


• The Americans with Disabilities Act (ADA) protects people, including those with a medical problem such as cancer, from discrimination in the hiring and the workplace

• The ADA also has provisions that apply to caregivers of patients

• The Family and Medical Leave Act (FMLA) provides eligible employees up to 12 weeks of leave per year to deal with their own medical condition or act as a caregiver

• Social security benefits and some state programs can help with income while a patient is disabled

Key Points:

14:00   Your employer cannot, or potential employer, cannot decline to offer you a job, because they know that you have a history of cancer

15:19  A reasonable accommodation must be made available for those who have a disability and need to make a modification in their work schedule or environment in order to return to work

22:01  FMLA provides an eligible employee with up to 12 weeks of leave per year to deal with their own medical condition or act as a caregiver

25:32  In most cases, you do not need to tell your employer or potential employer about your cancer diagnosis

28:01  Disability insurance supplements your income while you are unable to work

31:31  The Social Security Administration defines disability as a medical condition that is expected to last one year or longer, and keeps you from working in not just your current job, but at any job that you've had in the last 15 years.

32:51  If you are working but earning under a certain amount, you may be able to apply for disability benefits

36:27  Approximately 65% of applications for SSI and SSDI are denied the first time around, but it is worth appealing a denial because appeals are often successful.

Transcript of Presentation:

00:00  Overview of services provided by Triage Cancer:  Thank you. Our target audience is primarily patients in the cancer community, as well as caregivers. We work closely with healthcare professionals, and we provide continuing education to nurses and social workers, and we also work with employers. So, the idea here is to empower patients that know, one, if there's a potential legal issue, and two, where to access resources, so you can better advocate for yourself to hopefully improve outcomes on your treatment side. There are travel assistance grants available for patients and their families, if you want to attend any of the conferences this year. We will finish up the year in September in North Carolina and Texas. 

00:39  We have a webinar series specific to cancer related legal issues: This month we are having a webinar on our website hosted on getting and paying for prescription drugs. All of our webinars are recorded, and you can access those at any time as well. We also have quick guides. Steve has helped, and Marie has helped distribute some of the quick guides. These are available to you and your organizations, so your own cancer centers. If you volunteer or you want to give them to your patient navigator, we can send them to you in hard copy. We also have them available to download. I save a couple of these quick guides on my own desktop, just so I don't have to go and search as an issue comes up. I'm the go-to person in my family any time a remote, distance, seventh degree cousin encounters a health crisis, and I'm happy to be the resource, but I really just refer to the quick guides. These are all available to you. 

We have a lot of the information on our website also available in Spanish, thanks to funding, such as our funders who help put on the EBMT Conference. Genentech is one of our major funders that help with the Spanish materials. One of the things to keep in mind, we're going to talk about employment laws today primarily at the federal level. Keep in mind that the law is different at every state, and so we have state specific guides available on our website. You want to just double check what your state laws are, and we'll talk about that a little bit more today. We also have some of the material available in animated, two-minute segments. My son, this next generation, right, the only way they're going to get information it if it's from YouTube. Google's far outdated, and so we're trying to catch up with the times, and we have a couple of different topics available in these short, two-minute videos.

02:28  CancerFinances.org is a portal that we host on our website: This is a toolkit for navigating finances. The idea here is that as early in the diagnosis process as possible we want to make sure that we can empower you to have access to as many resources as possible to minimize some of the financial toxicity that we're exposed to when dealing with cost of care. Okay. So, we have the videos. We have videos on health insurance and reasonable accommodations, materials available in Spanish, CancerFinances.org, and now we're going to navigate cancer at work. 

How many of you at the time of diagnosis were working? How many of you are currently working? Okay. So, let's look at how many of you are considering going back to work? Okay. So, we know that employment changes and life changes can impact our financial health and security. Effectively navigating these changes often are rooted in a good understanding of the law and making sure that we understand what our protections are and where we start from. One of the caveats that I've noticed from working in this field ... I've been a cancer rights attorney for probably going on seven years now. I've been practicing law for 15 years and in this arena specifically for about half of that. ... is that when talking to patients around the country, it seems as though the good news is most employers, from what I hear, go beyond what the legal requirements are.

Now, that doesn't help us if we're in this period of recovering from a transplant and need additional time off, and we don't really know how much time that's going to be. Right? An employer needs to know, "Well, when will you be back, Suzy? I'm happy to accommodate you, but when will you be back?" "I just don't have an answer for you, boss. I really wish I knew." So, it's this gray area that if we can understand what the legal requirements are, then hopefully as our survivorship is fluid and we continue down this road and this journey of survivorship, we can then empower ourselves to have a more comprehensive conversation with our employer. 

05:01  The second largest contributor to financial toxicity after a cancer diagnosis are the changes in our work status, employment changes: We do hear stories of healthcare providers telling patients that they have to stop working through treatment or patients assuming they can no longer work. That may or may not be the reality for you. The reality for me is it's very fluid. Right? At different stages of treatment and survivorship your ability to work evolves. There are a number of places that if you are working, or you're considering entering the workforce again, you're going to want to make sure you have available at your disposal information of what your protections are. 

Before we jump into the law, it's really important to know that you have a copy and an understanding of your employer policies. Are you under a contract? Do you have a union contract that you work for? If you do, your union contract may specify certain provisions in terms of what your time off looks like. What does donated PTO, paid time off, look like? Whether or not you have any flex options. What are your disability options? So, having information either from your union contract and from your employer directly. Do you have an employee manual or policies and procedures? If so, that governs. One takeaway, issue spot, and recognize you may have legal protections.

The other takeaway is that, again, this is the bare minimum. So, many of our employers are going above and beyond. At the end of the day, some of the laws that we're going to talk about, primarily the ADA, is that you are not treated any differently than any other employee in your workplace. That is going to really be dictated from your employment policy or your HR manual. If your coworker, John, was able to telecommute two days a week, then you will be entitled to that same opportunity. So, there should be no different treatment. There should be equal treatment in the workplace, if you fall under the ADA and your employer falls under the ADA. So, the idea here is that individuals who are living with chronic illness and back in the workplace, that you enjoy a full opportunity of employment, as if you didn't have any chronic illness condition. There are a couple of requirements though, and we will talk about those in terms of whether or not a reasonable accommodation, such as telecommuting, is required by the employer. 

07:49  All of our states have a state fair employment law: So, the ADA is the federal law that we're gonna talk about. We'll also take a look at state fair employment laws. Again, both of these provisions provide for protection against discrimination, we should not be treated differently in the workplace, and then also allow for an avenue of reasonable accommodations, so long as they fall under this. FML and state leave laws are also in place in terms of looking for time off, not only for patients, but caregivers. Then our union and employment contracts. As we talk about rights and benefits, it's important to know that our employers are going above and beyond. I am repeating myself, so let me just move on to save time. 

Do you know if your employer has a manual, an HR manual, or employment policy and procedures? Does anyone work or have ever worked at a place where you do not have an HR Department? So, the question comes up every now and then, "Who do I go to to get that information?" Not all of our employers have an HR Department, and so we're going to talk about it at the end of this discussion as well, disclosure and what your privacy rights are in terms of if you are in a workplace where you do not want to disclose your actual diagnosis, there are still protections that you have in place, but you want to make sure that you have access to the policies and procedures. So, if you don't have your HR Department, you can go to your supervisor. You can go to a trusted coworker. At the end of the day, you can go to your state Fair Employment Agency also to help you navigate.

09:38  One of the resources that we encourage the patient community to become familiar with is called JAN. It's the Job Accommodation Network: It's a partnership through the EEOC and West Virginia University. They provide a portal, Job Accommodation Network, a portal to help individuals navigate the ADA. We're going to talk about the ADA right now. 

10:04  People with cancer may be covered und the Americans with Disabilities Act (ADA): Many people who are diagnosed with cancer don't necessarily think of themselves as living with a disability under the law. Therefore, we don't always assume that we're protected under the American With Disabilities Act, but this is one of the situations where if you work with your healthcare provider, you work with your doctor, you can help put yourself in a position that if you're needing a necessary protection or accommodation, you can seek that protection from your employer. 

Don't get caught up in the label or a person living with a disability because of a cancer diagnosis. The label is something that is just simply going to give us protection under the law. 

10:55  The ADA protects against discrimination for persons living with disabilities, and that is in several different contexts. So, there's three different contexts that I want to point out. One, it includes a person who is a qualified individual. That means the person is an individual who can perform the essential functions of the job with or without a reasonable accommodation. This is one of the hiccups. You're entitled to an accommodation if you can perform the essential functions of the job, the if. Practically what that means is you're qualified to do the job. So, if you are a lawyer, you need to do the essential functions of the job. To be qualified you have to have a license to practice. We'll come back to the accommodations then, if I'm qualified to do the job, what those accommodations could be.

11:55  Another hurdle is that you have to have a disability within the definition of the federal law of the ADA: Disability means different things in different contexts. Disability for purposes of Social Security is defined differently under the ADA. Before we get to the definition of disability, we want to make sure that your employer is also covered. What employers does it apply to? The federal protection under the ADA applies to someone who works for a private employer with 15 or more employees or a state or local government. If you're a federal employee, then you fall under the Rehabilitation Act of 1973, which essentially mirrors the ADA. The ADA applies to all phases of employment, not just while we're working. It also applies in the recruitment, and interview, and offer stage. So, before you even get the job, you're entitled to the protection under the ADA.

13:01  ADA protects patients with a disability and caregivers from employment discrimination because of a medical condition: What does the ADA actually do for you? The ADA, in the circumstances of providing protection, ensures that individuals are protected against discrimination, so that they are not treated differently because of a medical condition, but in order to get an accommodation you have to have a specific need. If you have a disability under the ADA, or you have a history of having a disability, or if you're a caregiver, you're protected under the ADA, but in order to get a reasonable accommodation you must have a disability, an active disability. So, it's interesting. I think of this as a history of a disability. If you have a history of a disability, you have protection under the ADA. In what context would that apply? All phases of employment. 

14:00   Your employer cannot, or potential employer, cannot decline to offer you a job, because they know that you have a history of cancer and then think because of that you're a greater risk. Right? You're maybe out of treatment. Your years out of treatment, but your history of having a disability cannot preclude you from being treated differently than other candidates. Now, there are practical considerations of how do you prove that, and we'll look at that. Another organization, before I forget, is Cancers and Careers. It's one of our closest partners at Triage Cancer. Cancers and Careers is a nonprofit that works on the practical realities of working with cancer.

So, Triage Cancer really focuses on the legal protections of working with cancer, and then we often co-present with Cancer and Careers, where they deal with the practical realities of how do you answer that questions in a job interview if I have a gap in my work history and I don't want to say, "Well, I took three years off, because I had a transplant, and I recovered"? So, they'll go through the practical realities, but the legal protection is that you cannot be treated differently because you have a history of having a disability. You can't be treated differently because you do have a disability, and you can't be treated differently because you are a caregiver. 

15:19  A reasonable accommodation is available for those who do currently have a disability and need to modify, make a modification at work. The legal definition of a reasonable accommodation is any change in the work environment or in the way things are customarily done that enables an individual with a disability to enjoy equal employment opportunities. The easiest way to talk about an accommodation is to look at a few examples. We lay them out as one, two, and three, or modifying workspace, modifying your schedule, or other options. 

Modifying the workspace includes maybe switching offices. You work as a greeter. You're in the front of the office, a receptionist. You deal with the public. Perhaps because of immune suppressant you want to be in the back of the office and not necessarily being the person who works with the public on the front end, so switching offices to the back. Modifying the schedule, working from home, working part-time, adjusting your hourly schedule, taking additional breaks, maybe taking a few days off every other week for your chemo schedule. 

Then other options may be use of technology, maybe neuropathy in your hands, and so you need software to help dictate, so you can more readily type documents. It may be about switching jobs entirely with your employer. If there is a vacant position, then that would be perceived in many cases as a reasonable accommodation. However, it is unlikely to be that your employer is required to remove somebody from their current position to put you in it, so that is unreasonable. Taking somebody out of a position to place you in it is an unreasonable accommodation, whereas a vacant position and a shift in that assignment would be reasonable.

When considering whether or not reasonable accommodation requests should be made, patients feel like they may be asking their employer for a favor, and that makes them feel at times uncomfortable. It's important to remember that this is a protection under the law for eligible employees, and the good news is most employers do go above and beyond. The employers who fall under the ADA are required under the law to provide a reasonable accommodation, unless, and this is the threshold, unless it's an undue hardship or a direct threat. This is a very high bar to clear. Reasonable accommodations are going to depend on individual conditions, how you are responding to treatment, as well as your individual job responsibilities. The accommodations have to be reasonable. Telecommuting for a bus driver is unreasonable. The major requirement is reasonableness. It may be that you need more than one accommodation and at different periods in treatment. 

18:25  Remember that the ADA also applies to caregivers, but caregivers are not entitled to an accommodation under the law: There are other protections, such as the FMLA, where they may be granted additional leave time, but they can't be treated differently as a caregiver for a person with a disability, but they're not necessarily entitled to an accommodation. Reasonable accommodations are an essential way for employers to retain good employees. Again, the idea here is to ask. It has to be a fluid conversation. Your needs change over the course of treatment. 

So, the requirement for the employer is that they shall make the accommodation, so long as it's reasonable, not an undue hardship, and not a threat. The court would look at whether or not you're engaging in dialogue. So, the request can be made initially, and then as your treatment takes its course, and in many instances the cumulative effect after a few weeks, a few months, a few years into treatment, perhaps the fatigue builds up and you need additional accommodations, maintaining that ongoing dialogue with your employer is what the court will consider in terms of whether or not there has been a violation of the ADA.

19:48  Some state laws offer more protection than the ADA: Many states are more protective than the ADA. One of the ways that states are more protective is that they actually cover employers with fewer employees than the federal law. The federal law has a, 15 or more employee threshold before it applies. This chart shows the number of employees each state requires for an employer to have before they're required to comply with the state fair employment law. For example, if you live in Illinois, their employer only needs to have one employee before they must comply with the state fair employment law, which mirrors or is usually greater than the ADA. If your state is not listed here, then it's the same threshold as the ADA, 15 or more employers. 

20:40  Who is helped under the Family and Medical Leave Act: Turning to the FMLA, we want to talk about the requirements that need to be met before you can be eligible to use FMLA at your employer. The FMLA, Family Medical Leave Act, the employee must work for a public employer of any size, or you can work for a private employer with 50 or more employees within a 75-mile radius. This essentially means that if you work for an employer, let's say a bank, and your branch only has 10 employees, as long as within the 75-mile radius of your branch there are 50 or more employees. This can be really helpful for anyone who has an employer where there are multiple sites or offices. Employees have to also have worked for the employer long enough. The FMLA requires employees to have worked for at least 12 months and at least 1,250 hours during those 12 months, which comes out to be about 24 hours a week if you work all 52 weeks. The 12 months do not have to be consecutive. They're cumulative, and you can look back seven years. 

22:01  FMLA provides an eligible employee with up to 12 weeks of leave per year to deal with their own medical condition or act as a caregiver:  What does the FMLA actually do for you? It entitles an eligible employee up to 12 weeks of leave per year to deal with their own serious medical condition or to act as a caregiver. The downside of the FMLA is- It's not paid. It’s not paid. Right. It's unpaid leave. The up side, its job protected. More importantly for those of us in the cancer community, its benefit protected. So, job protected and benefit protected up to 12 weeks a year. 

You do not have to use those 12 weeks consecutively. With no income we're going to look in the next few slides about how you can supplement your income through disability insurance. The job protection means that employees get return to work rights. When you come back from leave you must be reinstated to the same or equivalent position that you had when you took the time off. An equivalent position would be one that is equal in pay, benefits, responsibilities, and other conditions of employment. You can't be demoted or have your benefits taken away, but it is not unheard of that when you return from FMLA you have a different position.

23:22  Your employer is allowed to take action that they would have otherwise, regardless of the FMLA. One of those hiccups is especially when we saw the downturn of the economy in 2007/2009, we had employers who were making sizable layoffs and closing up. If your employer is engaging in a series of layoffs and your position would have been eliminated, regardless of FMLA, then that is not a violation of FMLA. So, it's job protected in that there are no adverse actions taken against you while you've been on leave. You can be reassigned to a position if it is in equal stature. 

When you are taking your sick time, you can use sick time or vacation time under FMLA. You could also use disability benefits. But your job protection is only guaranteed under FMLA. If you live in an at will state, again, an employer can eliminate that position for nondiscriminatory reasons. Ultimately, the final rule is that an employer cannot retaliate against you or discriminate against you for having a serious medical condition or for electing to use FMLA or the ADA.

24:51  If your employer pays a portion of your insurance premium every month, then while you're on FMLA they must continue to do that. However, they don't have to continue to pay your other benefits, such as disability insurance or life insurance. The reality is I believe most employers do that though during the period of FMLA. Once you return to work, if they decided not to pay their portion of disability or life insurance, those benefits will be reinstated once you return to work. 

25:32  In most cases, you do not have to tell your employer about a cancer diagnosis:  One of the most common question for the area of cancer and work is, "Do I have to tell my employer or potential employer about my cancer diagnosis?" The answer is generally no. 

However, there are three main instances where you are going to need to disclose something: If you want to use the ADA discrimination protection. The reason for that is if you haven't disclosed your disability, then an employer can't be discriminating against you because of your disability if they never knew that you had a disability in the first place. Two, in order to access reasonable accommodations, you need to share some information about your medical condition, but you don't have to use the exact diagnosis. Then third, if you're asking for medical leave, you have to disclose, again, some information.

The information needed will have to justify the request to substantiate and justify the election of these benefits. If you have a particular concern about disclosing your diagnosis and you need to justify the need for that accommodation of that leave, make sure you work with your care team to get any medical documentation on generic letterhead. So, sometimes if you want to preserve your cancer diagnosis and the privacy surrounding that, make sure your oncologist doesn't put it on cancer center letterhead. 

27:10  Disability insurance may be difficult to obtain after a caner diagnosis:  Disability insurance: There are a couple of different options. When someone's diagnosed with cancer, the reality is, at a certain point in our treatment we're going to stop working. Hopefully for most of us we get to go back if we want to, or we get early retirement. That's on your choosing hopefully. The reality is that we have to supplement that income. I encounter a lot of the questions, particularly from the young adult community that, "I didn't have disability insurance elected before my diagnosis. Can I get it now?" 

Disability insurance is one of the areas, aside from health insurance, that the underwriter can consider your preexisting condition. So, unless you already have this in place, it may be a challenge to, if not impossible, to elect it post-diagnosis.

28:01  What does disability insurance cover? Disability insurance, for those of us that have it, is usually employer provided, or you have a private policy that you added as a supplement through a group or individually. It will supplement a portion of your monthly income, anywhere from 45 to 90% of your income. So, it does not make you entirely whole, but it helps subsidize during the period that you use it. 

We have short term and long-term policies. A short- term policy is generally going to be one that covers for up to six months to a year, and then long-term policies will provide benefit coverage for anything beyond a year. Private policies can be purchased directly from an insurance company or your employer. 

If you get coverage as an employee benefit, again, if you're taking FMLA, this is something that your employer will continue to pay if you are electing to use your FMLA. Aflac is an example of a company that offers short term coverage through your employer. Many people don't realize that they have an employer provided policy, so again, talk to your HR to see. It might be very small, but maybe it helps cover for parking every time you have to go to the treatment center, something to help supplement your income. Don't assume that you don't have it. Make sure you talk to HR to see if you do have something.

When you do buy private insurance on the market, again, they can deny your coverage because of preexisting conditions. So, one of the things that unfortunately if why [you] haven't already elected it, the third takeaway is to please continue to be a messenger for your family and friends that that's one of the smartest things they can do for their financial security is to elect those policies early, because oftentimes we realize we need it when it's too late. The details of private policies vary from policy to policy, obviously from provider to provider, but even within policies, you and your spouse can have coverage from Aflac, but the terms of that coverage can be substantially different. So, make sure you understand what protections and benefits are provided under your policy.

30:20  In addition to a private disability insurance, there are a handful of states that have state disability insurance: They're like private policies, and the details differ state to state. California, New York, Rhode Island, Hawaii, and New Jersey, and Puerto Rico have a state disability insurance program. They're generally short-term benefits that last up to a year. 

Usually the standard of disability is lower. It's an easier threshold to cross. There's less work you have to do to prove you are unable to work because of a medical condition. If you want more detail about the state program, you can access that at Triage Cancer. 

Federal Social Security and Disability Insurance (SSDI) and Supplemental Social Security Income (SSI): Then looking at the federal programs, the threshold is a bit higher. The definition is higher, and the process is a bit longer. However, if you're able to access either SSDI, the Social Security Disability Insurance, or Social Security, the Supplemental Security Income, SSI, you can get the benefit of either long term and high standard disability insurance, long term and high standard disability insurance. They're entirely different programs.

31:31  The Social Security Administration defines disability as a medical condition that is expected to last one year or longer but keeps you from working in not just your current job, but they look at any job that you've had in the last 15 years. So, they will look at your work history. The definition is that you cannot do your job. You cannot adjust to a new job, and your disability has or is expected to last one year or longer or result in death. 

32:09  While SSDI and SSI are federal programs, they are administered at the state level so coverage can vary from state to state: While these are federal programs, they're administered at the state level by DDS, Disability Determination Services. This creates a situation when you come to events like this, which are incredibly beneficial, especially meeting patients from other parts of the country and at different stages of survivorship. You get to learn a lot from their experience, but keep in mind, because they're administered at the state level, a denial in one area of the country doesn't necessarily mean a denial in another part of the country. So, it's really important that you speak to DDS yourself to see if you are eligible for benefits. Unfortunately, there are discrepancies within regions. 

32:51  In some cases, you can apply for SSDI benefit while you are still working:  One of the most common questions about disability insurance is, "Can you apply for benefits while you're still working?" The answer is it depends. If you're working, but earning under a certain amount, you may be eligible for benefits.

SSDI benefits are based on how much you've worked and paid into the system over time. Most of us contribute into Social Security Retirement System and may not have even realized it. You've just thrown away the statements when they come in the mail every few quarters, every quarter. You can look at your paycheck or your pay stub to see if there's a deduction for Social Security Retirement taxes. If you're self-employed, you have to proactively pay into Social Security. If you're a member of a union, double check to see if you've paid into it or if you pay into an employer retirement system. 

33.43  If you don't pay into Social Security Retirement System, then you can't draw on disability benefits: If you are eligible for SSDI, the amount you are paid every month depends on how much you paid into it over time. Someone who works consistently over the last dozen to 20 years making $200,000 a year is going to get a bigger check than somebody who had inconsistent work history making $30,000 a year. What you pay into the system you're going to receive a percentage back with your disability benefits. The benefit in 2018 was capped at $2,700, $2,788. In 2019 the cap went up to $2,800. 

34:30  The downside to SSDI, it's a five-month waiting period from the date of your disability, from when it began, in order to get cash payments. Most people can't go five months without income, and so this is a practical problem. The Social Security Administration knows the application process can be lengthy, so what they'll do is they will give you back pay for the payments back to your date of application, but they will deduct, or they will not account for the first five months from your diagnosis. So, you will get back pay, but not your first five months. Someone who just realized that you can apply for SSDI, but you've had your disability for 18 months, again, you will get the back pay, but not for the first five months. 

35:21  Differences between SS and SSDI: Even though SSI and SSDI have the same standard of disability for a higher threshold, there are some differences. SSI is available to persons with low income and low asset level. SSI has a maximum federal amount of $771 in 2019. Most states also provide additional benefit on top of that. It's called a state supplemental payment. Every state has this, except for Arizona, Mississippi, North Dakota, and West Virginia. 

With SSI there is no five-month waiting period, so your benefits start with your first month after your disability begins. In addition, your benefits will be backdated, just like SSDI. SSI is tied to health insurance coverage, so SSI tied to Medicaid in most states, because it's income qualification based. In fact, if you qualify for Medicaid in certain states, you automatically qualify for SSI. 

36:27  Just like our health insurance discussion, unfortunately most applications in SSI and SSDI are going to be denied. There's a high probability. About 65% of all applications are denied on the first go. The good news is that there is an extensive appeal process, and there is positive outcome to appealing. 

The critical point here is you have to work with your healthcare team. Your oncologist and your medical provider, you need to make sure that they know you are appealing, and they can help navigate through the steps. They will provide any additional information that SSA may be seeking to help substantiate that your medical condition qualifies for disability benefits. 

For example, have you developed a new side effect since you first applied? Does something need to be considered in terms of long-term survivorship side effects? One of the things that comes up quite often is chemo brain. Cognitive impairment or chemo brain, as we know it, has been considered, there's more medically based research to substantiate the reality that most of us live with, and Social Security Administration is acknowledging that in certain cases cognitive delay or cognitive impairment is a result of long-term chemotherapy and long-term side effects does exist. Again, that's working with your medical team and continuing to persist in your appeals to make sure that you're entitled to the benefits and you start receiving those. 

38:07  There is a specific time frame to appeal a denial of SSI or SSDI: You need to make sure that you keep an eye, once you do apply, for the response from SSA. Expect it's going to be denied on the first round. But it's really important, because you have a very specific timeframe of which you can elect that appeal. If you miss the timeframe, then you do have to start the process all over again. It just further extends the time in terms of income support. 

There are four levels of appeal. The first round is called a request for reconsideration. It's where you ask them to just reconsider the application. Some states and cities have skipped this step and gone straight to the second level, which is the administrative law judge hearing, or the ALJ hearing. This is where you go and meet with an impartial judge, and a vocational expert, as well as your representative or any medical experts you bring to the hearing. In this hearing the judge asks the questions and gets to make the decision.

39:01  Do you need an attorney to appeal a denial of coverage of SSI or SSDI?  I get asked often about retaining attorneys for the appeal process. There are statutes in place that provide for attorney's fees when you are going through your appeals process with the Social Security Administration, so it may be a worthy endeavor, if you are going to appeal, to consult an attorney to see if they may be able to help in the process. In looking at insurance resources, again, there are a number of different websites, different options available for you and your own situation. Our website has this information available for you. 

39:47  Check your employer plans and private plans for caregiver benefits:  You'll want to double check your employer package, as well as any private benefits. The benefit is that, if you do live in one of the handful of states that provides income assistance for caregivers, then you will benefit from this if you are taking time off under FMLA. There are also in-home support services. It's referred to differently at the state level, so you'll want to double check. This is a benefit through Medicaid Program. Triage Cancer website also has a list of those states and the contact information for caregiver income support. 

Thank you to everyone for your time today. This is a bit of a nuanced area. In the essence of kind of saving time we looked at ADA broadly and accommodations broadly. We touched on disability insurance and what some of those income support programs are. I think the idea here is that each circumstance is very unique, your own treatment plan, your treatment team, how you're responding to treatment, and what your work background is. We're happy to speak with you afterwards. You can contact our office at Triage Cancer, Cancer and Careers, and Job Accommodation Network, all great resources. I wish you the best of luck on your employment path and your survivorship journey. Thank you. 

Question and Answer Session:

41:14  Thank you very much, Jamie. Are there any questions while we're still in here? Okay. 

41:22  Yeah. Absolutely.

41:24  [audience] So, if we didn't want to specify to like when we're applying to a job what we had, our cancer diagnosis, what exactly would we put on the application or would we tell them in the interview? How would you go about that?

41:36  If you do not feel comfortable disclosing, do not disclose. 

41:40  Yeah. You just don't tell them until you're hired. But if you needed benefits, how would you-

41:48  So, you only need to disclose what is necessary if you are asking for an accommodation. Otherwise, you do not need to disclose ever. Even if once you are hired and you need to take some time off for treatment, you still don't have to disclose your diagnosis. You only have to disclose what is necessary, which is a doctor’s note that says, "Bernadette needs three weeks off for a medical procedure," period. They don't need to know what it is, unless, again, if the accommodation you're asking for does pertain to a modification in the workplace. So, it's really a need to know basis. You tell them what they need to know. If you're applying for a job that requires ... it's a labor driven job, so in that job the essential functions of the job, the essential requirements, you need a modification on that, then you're going to have to disclose as much information as needed. 

There's also a point in the hiring process if during the job interview you need an accommodation, which may be a device to help hear, a device to help speak, then you can make that accommodation, and again, you're protected. So, they can't retaliate or not give you the job offer because you've asked for an accommodation in the interview process. To make sure I understand your question, Bernadette, so you only need to disclose on a need to know basis if you ask for an accommodation for the position. You also said the word benefits. You said, "Do I need to disclose to get the benefit?" Are you talking about health benefits?

43:35  Well, just like the accommodation, like if they-

43:39  If they would accommodate?

43:41  Yeah. If they would accommodate.

43:43  So, practically speaking, you would go through the job interview. You're going to make me the job offer. I'm going to accept, and then on day one or on week three, whenever it's necessary, if I need a modification, then I can start engaging in that dialogue, but there's no requirement that you tell them on the front end, and there's no requirement that you ever tell them. Now, some of our jobs are going to require us to go through a health screening, and they will make you an offer for employment conditioned on that you pass the health exam. So, again, as long as you can perform the essential functions of the job that you're applying for, they can't rescind that offer of employment just because in the health screening the doctor found out you have a history of cancer, unless that history of cancer, for some reason you are unable to complete a part of the job, which is perhaps labor intensive or some other form. 

44:44  What is the responsibility of the employer in that case? Let's say if it's a small company. You know, we're talking about the larger ones. Let's say a four or five ... We're talking about [inaudible 00:44:55] where they are protected. Let's say if I want to go to an employer of four people, what are their responsibilities if I have cancer, and I say, "Oh. By the way, now I have to take off a month or two," whatever? What is their responsibility at that time with smaller companies?

45:18  You'd want to look at state fair employment laws. In some of the states it's one employee, so you're good. In the other, if you don't fall in that category ... I'll tell you, we used to staff a hotline, a national nonprofit hotline, where folks would call and say, "Hey. My employer's not giving me ..." I had lots of examples. "I'm on call. All I'm asking, I'll still do my job, I just need a good night's rest. I need to not be on call throughout the night and on weekends, because the fatigue." The employee was either in these instances doctors or nurses, and the employee were small medical groups, and there is no responsibility under the law. So, the law does not always apply to small businesses.

That was my biggest shock was, I tell you, most employers go above and beyond, but the ones that I saw, that common thread that they didn't always accommodate the adjustment in work schedule, were medical providers. I found that mind boggling, the irony of that. Right? So, doctors and nurses were struggling with their on-call schedule, and it was because they worked at a small practice, and they didn't meet the threshold. So, small employers, until they meet the threshold, there is no legal obligation. 

46:42  Hi. Excuse me. I'm on long term disability for my major corporation employer plan, as well as the Social Security Disability. My two-year anniversary of the long-term disability's coming up in August. I will probably never be able to go back to my old job. It was a very demanding job. And I've had people tell me that at that two-year anniversary date you run into all kinds of trouble from the insurance companies, where they're trying to get you off claim. Is there anything to that rumor?

47:17  So, you're going to fall into Medicare. 

47:22  I'm not talking about for health insurance. I'm talking about being forced off my long-term disability claim to go back to work.

47:32  I don't have an answer to that. Can we talk sidebar? Does anyone else have experience? 

47:32  Mm-hmm (affirmative).

47:37  And I'm sorry. 

47:38  I've actually ... Oh. Sorry. I've actually been on long term disability through my employer since 2012, a little bit in 2010, because I had FMLA and all of that. Every two years they evaluate. Sometimes you'll get a phone call, and they'll say, "Do you have any information? What's going on? What's this?" I literally slam them with every single doctor I've seen. You know? Sometimes they come back, and they're like, "Well, we only want to talk to the oncologist," and I'm like, "But you don't understand. I now have an orthopedist. I know have endocrinologists. I now have ... and it's all a result of this." So, you kind of have to be a little persistent with them about it, but I've maintained ... 

I mean, I actually had Social Security Disability for about four years. First go around was when I was diagnosed with AML, second go around when they evaluated. They literally called me in the hospital, and I'm like, "Well, I'm sitting here waiting for a transplant." You know? So, they immediately approved that, but this last time they said, "Well, you're better now," and I'm like, "Well, I'm not dying, so, yeah. I am better now, but-"

48:56  I can't go to work.

48:57  ... they said, "You can work maybe a modified or a lower level job." I'm like, "I worked a desk job. How low can you go?" You know? So, I got kicked off of that, but then MetLife re-picked up the slack of the SSDI that I lost. 

49:14  So, SSDI-

49:16  SSDI booted me out.

49:16  But MetLife-

49:20  But MetLife continued to-

49:20  ... took over. 

49:21  Then they paid the difference again, because I lost that difference when I got SSDI. They then gave back that difference when they found out I lost SSDI. I mean, it's still you have to undergo a lot of interviews, and I explained to them thoroughly, "Listen. You've got to look at more than just this doctor," because when I originally started it, it was thyroid cancer, and now it's leukemia. So, it's spanned nine years.

49:56  But why did you get kicked off SSDI?

49:59  Because they feel that you're better, and I'm under 65.

50:02  And everyone uses a different definition of disability and provides different coverage, so the program requirements change. So, because you qualify for one doesn't mean you qualify for the other and vice versa. 

50:18  I actually have a question, because, like I said, I ended up having to leave my job in 2011. My boss was willing to accommodate me. Her boss was not. So, I basically had to leave a job that I loved and said, "Okay." But I'm kind of wondering how do I explain a nine-year absence basically? I mean, I don't have a kid that I can say, "Hey. I just raised a kid, so I'm coming back," but yet you also have a lot of ... I know they have to give you accommodations, but how do you even get hired in the first place without ... because they might say, "Oh. Well, you're not up to the qualifications anymore." They can always find an excuse. Because I actually worked for a staffing company in internal audit and accounting, and I know the excuses that you can be given as to how they can sort of sneak around-

51:19  Skirt-

51:20  ... the law, so to speak. 

51:23  Right. Cancer and Careers is going to be the best platform. What they do is they actually will help you write your resume to be very authentic, but in a way that maximizes your strengths and tries to diminish the gaps. So, they'll help with resume review. They also do mock interviews. They'll set you up with ... Either they can do it remotely online or they have conferences. They do travel assistance grants, and they have an annual conference in New York actually. They'll help with the interviewing and the practical realities of it. You know, you're protected, but the reality is we all-

51:23  You're protected, but you're not.

52:08  ... we've all had those conversations with a hiring panel and the awkward silence or the uncomfortableness. Cancer experience and journey is an opportunity for us to do an inventory of some priorities for ourselves and absolutely respecting the space that some people do not want to disclose, and other people are very forthcoming with it. So, depending on what industry you work in, how much you want to disclose about your health history and where you are today, it could be a conversation that you have with Cancer and Careers, where, depending on where you're looking, maybe you do want to use that as leverage to set you apart from other candidates. The reality is most families around the world have been touched by cancer, so that might be what makes your interview memorable, if you have an inspirational experience. So, navigating it is going to be tenuous, and it's depending on your audience.

53:11  Yeah. It's just really hard, because, like I said, I know how ... We used to do hiring as well for our own people, and you need to explain why all of a sudden you have a gap.

53:25  Right. I would encourage you, and it would be supported on Cancer and Careers, I would encourage you that in additional to your two full time jobs, one being in treatment and two, fighting with insurance, adding some additional things that you can point to, so writing, blogging. It can be on topics that are of interest to you. Right? Photography. So, developing a portfolio that you can show you have used some time to get a certificate in therapeutic writing, to broaden your horizons outside of what is traditional, we expect, work experience. Right? Being a bit more creative and thinking outside the box, so we can use that as leverage to fill in those gaps.

54:16  Do you want to ask one more question?

54:19  Yeah. I've got a simple question. My girlfriend was out of work for five or six years. She just went back to work. Can she go back and get any of that money back from SSI or any of that other stuff? Can you regroup some of that money, or actually me? 

54:36  I don't think so. There is a program for those of you that are on SSI, a return to work program, where you can modify, wean back into work to continue to receive your benefits.

54:51  But she never got any.

54:55  Right. I don't think so. I can talk with you afterwards and put you in touch with Joanna in our office to just double check, to make sure that you ... Right? Because that's the fourth takeaway. Make sure you uncover every stone. If there's a benefit out there that we've paid into, seek it. You have plenty of expenses, unintended expenses in this journey that you should be entitled to. 

55:17  Can we just ask a question to that website up there?

55:25  Yes. There will be a contact information on the website. The executive director, the president, and founder of the organization, Joanna Morales, and Monica Bryant, I've worked with them for years. They are very patient-centric. Their entire careers have been spent in the cancer community. They definitely want to help you. If you have a chance to be in Chicago, North Carolina, or Texas, please try to attend one of the conferences. They're really informative. Work with your health centers to also send their doctors, nurses, social workers to the conferences too. It's good information generally. 

56:01  All right. 

56:02  Thank you.

56:02  Thanks very much. I appreciate all the great questions too.

56:06  Thank you. 

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