August 29, 2023
I attended a webinar on self-advocacy sponsored by Lungevity and featuring Nicole Jolicoeur, a staff attorney from Triage Cancer. Triage Cancer is a non-profit organization that provides FREE information “on the practical and legal issues that arise after a cancer diagnosis.” What it offers is astounding, and more than I can cover here. I urge you to look at the site yourself and bookmark it for future reference.
Notes on Nicole’s Presentation
Remember, these are just my notes, based on what I was trying to capture as I listened. If you have questions, contact Triage Cancer.
Triage Cancer works to help cancer patients strengthen our voices and feel empowered in our own circumstances. This includes communicating with healthcare teams, understanding employment options and considerations, coping with health care financing, insurance, etc.
Although they don’t have a hotline, Triage Cancer offers 1:1 help for patients, caregivers, and health care professionals. They write,
Our goal is to steer people towards the most appropriate resources – whether those are medical, financial, practical, legal, or other psychosocial care resources. The goal of these navigation services is to explain your options, provide accurate information, and empower you to take next steps.
Go to their site, fill out an immediate intake form, and receive a response within one business day.
Opening Comments
- Often, cancer patients feel they are shoved into systems and feel like just another cog in the system. Self advocacy helps us learn to use the system for our own benefit.
- Communication is key. We must speak up about what we want and not assume people know what we want, particularly our family and/or our healthcare providers.
- Assumptions & reframing Always keep in mind that we battle assumptions about our situations, even with our health care providers. For example, they may automatically assume we will not be working. If we want to work, we would need to “reformat the conversation”: “I’d like to talk about what I need to consider if I decide to return to work.”
- Ask for help Much self advocacy means not doing everything on our own. At the same time, when people assist us, we should understand– and make clear– that doesn’t mean we will follow their advice (or even seek their opinions.)
- We may ask people to take on specific tasks. For example, to open medical bills, review them for accuracy, and then track payment of them (insurance, copays, etc.)
Employment
- Learn what your options are.
- Understand the ADA, Americans with Disabilities Act, and whether it applies to your employers.
- Understand terms and what they mean in your situation. For example, disability can be defined differently from situation to situation.
- Understand the FMLA, Family Medical Leave Act, and how it applies to your situation.
- What other protections might be available to you? Federal laws provide foundational coverage, but others may be available to you. Some states provide more protections than others. Is yours one of them? What are those protections?
- What are your company’s policies regarding illness, disability, insurance, etc.?
- Changing employment
- What are you looking for in the company in terms of benefits, policies etc. Different sizes of companies offer different kinds of protections, including insurances.
- When you receive an offer, dive deep. You might ask to see the employee handbook, the written terms of health insurance coverage, disability coverage, part time work, etc.
- It’s possible that life and disability insurance that’s offered through your current company may be “ported” or “converted” to private coverage, i.e., where you take over payment for it.
- Pre-existing conditions
- If your medical condition is covered under FMLA, a company cannot exclude you from coverage. This does not apply to life or disability insurance. These plans may have exclusions. Check this carefully. Again, check the parameters of “disability” in any situation.
Disability Insurance
- 5 states and Puerto Rico have their own disability regulations.
- Disability coverage may be short term and/or long term.
- Private disability coverage may have a waiting period. Also, does their definition of disability change over time in terms of the coverage they offer?
- Federal disability coverage: Supplemental Security Income (SSI)
- is slow moving
- has a high standard of definition of disability
- has a waiting period
- is initially a medical process– a cancer diagnosis is not immediately a designation of disability
- is based on your medical records— make sure you check them carefully. For example, your physician may write that you’re “doing great” but that might refer only to the tumor’s response to treatment. If you are be incapacitated by side effects, “doing great” is not an accurate assessment of your condition.
- There is a high initial denial rate, but once you make it through an appeals process, the rate of acceptance rises.
- Contact them, don’t wait for them to contact you. Stay on top of the process.
- The SSI benefit is a fixed amount and can be reduced based on other benefits.
- Social Security Disability Insurance (SSDI) is based on your work history and how much you have put into the system
According to Nicole, Triage is “big on health insurance advocacy.”
My Conclusions
Do. Not. Mess. Around. With. This. Stuff.
Do not assume you understand the legal and/or financial technicalities of your situation. For example, we traveled last winter. Having had previous experience with canceling a trip due to Covid, we wanted to get trip insurance. I was convinced I would not be eligible because of the cancer. After poring over the fine print, I discovered my situation was not excluded from coverage. Had I not fully understood that fine print, I planned to call potential insurers for more information. But it took some careful reading and a willingness to advocate for myself (which is sometimes easier said than done.)
Do not assume you should or can manage all this yourself.
Even if you do feel you understand the technicalities, or that you can manage your situation, make sure you have knowledgable, experienced people to guide you. If you have the slightest question, seek information and support. Triage Cancer might be able to steer you to exactly the resources you need.
Thanks for reading. Here’s hoping you get the support you need today.