Epilepsy Blog Relay: Disability in the workplace

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

First, like always I want to welcome those that are just reading this blog for the first time and welcome back to those that have been around a while. The topic of disability in the workplace has come up quite a few times in my group of epilepsy friends. Just for the record: I would like to make a point to state that this blog is not written about me or anyone, but instead to educate anyone with a disability trying to gain employment, those in the workplace, and certain laws that pertain to both.

After researching this topic for months, I have decided that the best way to tackle this important topic is to separate this into two or three different posts to do it justice (pardon the pun). This first installment I am going to explain what the Americans with Disabilities Act is and when employers can ask about your disability.

 

Americans with Disabilities Act

Before we dive into employment laws that pertain to epilepsy and disability, I think it is best that we establish what the Americans with Disabilities Act (ADA) is and the history behind it.  According to the United States Department of Justice, Civil Rights Division, “Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities”. The ADA was passed in 1990. This was the first civil rights law that specifically addresses the needs of those with disabilities that prohibits discrimination in employment, public service, public accommodations, and telecommunications. Also, according to the US Department of Labor, “The ADA defines an individual with a covered disability as one who has a physical or mental impairment that substantially limits a major life activity, as well as those with a record of, or are regarded as having, such an impairment. Under the Americans with Disabilities Act Amendments Act (ADAAA) of 2008 (which became effective January 1, 2009), all persons with epilepsy should be considered to have a disability covered under the ADA, and therefore will be protected from employment discrimination.”


Related: The ADA and Epilepsy


Before you get the job…

One of the biggest questions I’m asked is when and why can people ask about your disability. There are usually three times in your career when this question usually comes up, the first of these is prior to a person receiving a job offer. According to The US Equal Employment Opportunity Commission, a potential employer may not ask if you have epilepsy or another disability. They also may not inquire regarding the extent of a disability. The only real time that it is okay for someone to ask regarding your disability during pre-employment is if there is an assessment regarding to your skills regarding to the job in which you have applied.

 

On the ADA and Epilepsy

 

Now that you’ve got the job…

The second time that the question of whether an employer can ask you questions regarding your disability is while you are presently employed by a company.  The answer to this is a tough one on the side of the employee. According to the National Epilepsy Foundation, “An employer may make disability-related inquiries and require medical examinations only if they are “job-related and consistent with business necessity.” This means that the employer must have a reasonable belief that an employee will be unable to perform the basic functions of his or her job because of a medical condition or that the employee will pose a threat to health or safety because of a medical condition. Again, the only time that your employer needs to ask about the extent or details of your disability is if you are not able to perform your job description without accommodation or assistance.


Related: When a seizure happens at work


The third time that the question of whether an employer may ask questions regarding your disability is when you are requesting an accommodation to complete your essential job duties. This is the time in which you are in a place you need assistance in the workplace. Many times, when I hear people discuss this situation, there is a negative stigma around this. There are completely varying degrees of the need for assistance. Most importantly, you must ask the question of how long you have worked for this company and if your performance in this position is truly due to the disability or being overwhelmed in the role. Also, there are situations that physically can keep you from accomplishing your job (ie; lighting such as blinking lights, a desk where you can access and utilize, and healthcare access).

Check out the resources we included here and keep an eye out for more on this topic.


NEXT UP: Be sure to check out the next post by Audra at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Epilepsy Blog Relay: Raising a child with multiple chronic conditions

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Rachel’s story

Andrew is my first born, I was 30 years old and more than ready to begin my life as a mom when he came into the world. On the day Andrew was born, I was 38 weeks pregnant and was expecting a healthy baby. From the moment he was born Andrew was showing signs of distress. He was bruised, had a misshaped head, and he grumbled and grunted when he breathed. His cry was high pitched, but even with all of that he was perfect to me, and I was ecstatic. I was now a mom.

When Andrew was two days old things would change dramatically. Unknown to me, Andrew had a seizure and turned blue in front of the nurse. He was rushed off to the NICU where he would remain for the next 14 days. For whatever reason, Andrew’s brain had bled. Andrew is now 18 years old and I am now a veteran mom.

Multiple Chronic Conditions

Andrew cannot talk or walk. Those brain bleeds damaged his brain and left him diagnosed with Cerebral Palsy, Lennox Gastaut Syndrome and Cortical Visual Impairment. He can do very little unless I am there to help him. With all of Andrew’s struggles, and even as I adjusted to life as a mom of a child with special needs, Andrew has always been first and foremost my child. He is a central part of our family of six, and we live a very full, active life.


Related: 8 valuable (and brutal) life lessons everyone should learn


Our nightly walk

One of Andrew’s favorite activities is for me to push him outside in his wheelchair throughout our neighborhood. We usually take our walks after dinner-time, when the lighting is dim and the air is cool. Andrew is at his best then. I know Andrew enjoys our time together as we travel our usual route through the neighborhood. This is our happy time. I know this because Andrew sings most of the way. He’s content and that makes me happy. These moments when I know Andrew is content are when I am most at ease.

We were out on a walk the other day and just about halfway through our walk, a car approached. The car passed. It was our neighbors, so I waved hello. In the car were a teenage boy and his dad. The boy was learning how to drive. And with the pass of that car, in that quick moment, the happy moment I was having walking with my son came to a screeching halt.

It hits me. Just like that, I am taken somewhere else, I can feel my heart racing. I have tears coming from my eyes all because that boy is driving. Yet, my son is in his wheelchair and is being pushed by his mom. That boy is experiencing life like most everyone else. He is learning to drive. My son should be driving. He’s that age. He should be driving.

The questions start to race through my mind. Why does Andrew not get to drive? Why did this happen? Why does this particular moment hit me so quick and so hard? I am after all a veteran mom. We’ve been through a lot. I’ve been told things that no mother wants to hear about their child and I’ve taken it all as it comes, but this moment that is so simple is knocking me off my feet and bringing tears to my eyes. Why? It takes me a few minutes and my mind has run through all sorts of emotions; sadness, pain, anger, resentment, and back to pure heartbreak. I want Andrew to experience everything every other boy does, and he won’t. I try to get myself together.

We’re still on our walk except I’m not paying any attention to Andrew and to where we are walking. My mind is in a place far away. If I had been paying attention, I would see that right then we were at Andrew’s favorite part of our walk. We were around the block, where the pine trees line the road. Andrew doesn’t see much, but I know he looks up every night at that exact time, in that exact spot and follows with his eyes that row of pine trees that line the road. Andrew recognizing those trees during this part of our walk is a milestone for us. He is still singing too. He is delighted with our walk and that simple feeling that I can sense from him helps redirect all those emotions I am feeling. He is happy. Really happy.


Related: When its okay to be a helicopter parent


What I learned

One of the most important things I’ve learned over all these years as Andrew’s mom is that it is healthy for me to grieve my loss, and to feel sadness for what has happened. I can have temporary lapses. Emotions don’t necessarily surface during an obvious moment, they can sneak up on you when you least expect them. It is okay for me to let any emotions I am feeling to come to the surface. That is okay. It is actually needed. What I’ve learned most of all though, is that Andrew needs me now. He really needs me present in the moment with him. He deserves that, every child does.


NEXT UP: Be sure to check out the next post by Rachel E. at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Epilepsy Blog Relay: Ways to help with medication costs

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Alison’s Story

Since my diagnosis with epilepsy in 2006, I feel like I’ve tried every medication possible to try and stop my seizures. My neurologist added Fycompa in 2016, I’m still not seizure free, but it’s helped decrease my seizures. When I started taking Fycompa, there were issues for the first few months relating to insurance pre-authorization and the cost of the medication. I had been taking the medication for two months without a problem. My neurologist had given me a discount card for the medication, which made it cost only $10 for those two months.

An unwelcome surprise

The next time I went to pick up my medication, the pharmacist told me “That’ll be $600.” I was shocked. $600 for 30 pills?! I asked if my insurance covered this medication and it turned out since it wasn’t a generic medication, my neurologist had to fill out pre-authorization forms. I couldn’t afford $600, so I now had to go without my medication – the one that worked the best at keeping my seizures away.

I informed my neurologist about this issue, and he filled out the pre-authorization paperwork for my insurance company. It took over a month for the insurance company to process the paperwork, so again, I was without my medication during this time. Once everything was processed, I went to pick up my medication, and the pharmacist told me “That’ll be $100.” I paid for it this time, since I wanted to start retaking it, but I didn’t have an extra $1200 to cover the medication for the year.

I called my insurance company to see if the medication was covered why the cost was still so high, they told me because Fycompa fell into a specific medication category it would be $100 a month. I couldn’t afford the cost, and I was frustrated since this medication seemed to be working the best at limiting the number of breakthrough seizures I was experiencing.

Finding resources

I asked my neurologist if he knew of any way to bring the cost down since he had previously given me the $10 discount cards. He informed me of the Eisai Patient Assistance Program, which included Fycompa and a few other medications. I looked into the program, and I ended up applying to see if I would qualify for it. The application has a section for your doctor to fill out, you as the patient to fill out, and you must provide proof of income, if applicable. It took about a month to hear back from the program about my application, and I’ve now been paying $0 for Fycompa since 2016.

I’m so thankful my neurologist informed me about the Eisai Patient Assistance Program as it’s made my medication affordable and I didn’t know anything about the program or programs like it. I want to make sure others know about it, so here are some resources about patient and medication assistance programs:

Patient Assistance Resources:
Eisai Patient Assistance Program
Sunovion Patient Assistance Program
UCB Patient Assistance Program
LivaNova (VNS) Patient Assistance Program
Lundbeck Patient Assistance Program
American Epilepsy Society Patient Assistance Resources
Epilepsy Foundation Patient Assistance
Partnership for Prescription Assistance
RxAssist


NEXT UP: Be sure to check out the next post by Rachel at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Share your story

Epilepsy Blog Relay: Epilepsy and Fear

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Beth’s Story

Beth tries to post regularly about a number of issues, ranging from her interests in business anthropology, talent management, career advice and her own journey with epilepsy. What is true, regardless of her post, is that she examines issues in a frank, but nurturing manner – trying to “tell it like it is,” while still providing an interesting, or different points of view on topics on her forum.

Join Beth during the Epilepsy Blog Relay as she discusses her own journey with Epilepsy, and its impact on her own fears and struggles as she strives to be an active wife, mom, friend and co-worker, who just happens to have epilepsy.

READ BETH’S STORY

 

NEXT UP: Be sure to check out the next post by Alison at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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