I was asked if I would want to write a blog about health insurance and brain injury. Please note, I am not a professional in health insurance but I am a traumatic brain injury survivor who happens to be a Certified Health Education Specialist who has worked for one of Oregon’s Medicaid health programs (you can learn more about me in the July 7, 2020 BSFBI blog titled Jessy). I’ve also worked for many local hospitals in care management and providing insurance companies with records when you are treated inpatient in order for our hospital stay to be covered. So with my years of experience in the medical and insurance field, I have learned quite a lot about how to navigate the health system and know quite a lot about insurance too. Beyond this, I am always available to help anyone with a brain injury to navigate this complex system and care. This is my purpose. To help others. I am so fortunate to have retained a lot of this and it has saved me thousands of dollars as well because insurance companies make mistakes!
Power of Attorney
My first piece of advice to anyone who suffers a brain injury is to have a power of attorney. This gave my husband (can be a parent or anyone responsible in your life) financial and medical power of attorney over me. I had a severe brain injury and was definitely not in the space to make decisions after my injury. This came up when I got a huge bill for rehab services that came to my home. It was not contracted by my insurance and the bill was $6,000.00. It was a great service, but why would we sign up for something that expensive for a few months that was not included in my insurance? I didn’t think I would. I found the paperwork after lots of searching and surely I did. I did. Me. The person with a brain injury who did not have the ability to make that decision. There are two things wrong with this situation. Care management should never have been talking to me alone about this in my circumstance. They should have included my husband in this and I shouldn’t have even been given rehab not contracted with my insurance. I was discharged home needing 24 hour care. Coming from an inpatient discharge planning perspective, this was a poor discharge.
The Right Providers
I also got very little follow up. Luckily they had one appointment for me to follow up with a physiatrist. She has been a blessing along with retaining my knowledge. I did wonder if I should follow up with a neurologist because I had brain bleeds so I assumed I would but I never did. My physiatrist is my main provider I follow up with and she guides me well. I did have a gastroenterologist and oral surgeon I followed up with to get my feeding tube removed, but that was it. I also have a primary care doctor, but I use my physiatrist for most things. Anything related to my brain, I go to her.
Support Within the System
My physiatrist wanted me to go to a brain injury rehab near where I live. It is full clinic of psychology, occupational therapy, speech therapy, physical therapy, nurse practitioner and more. It is amazing and all the providers and staff are trained in neuro rehab. I had a referral but when I called there were issues with the referral and documents for me to go. I wanted to give up at this point. Just trying to get established there was difficult. But I didn’t give up. I talked to my physiatrist’s office and they had a patient navigator who I worked with to help me to ensure I did not fall through the cracks. Many medical offices and systems have positions like this now, so ask. Asking. That is something I have learned to do. Ask. Ask for help. Ask if you don’t understand. Ask because your care depends on you being an advocate for yourself. Some health insurance companies also have a case management department. I used to work in one and they can be critical to helping you navigate insurance and the health care system. Usually they consist of nurses, care managers, social workers and assistants. Sometimes more professionals, but call your insurance company and ask if they have a person or team that helps you with insurance, navigating the system and advocating for you.
Insurance is Complicated
Insurance is SO complicated. And every insurance is different. There is no way to know all of them. But there are a lot of similarities. Some have deductibles. Some have out of pocket maxes. Most have in network, out of network and preferred providers and your coverage will depend on this. Some providers will be covered 100%, some 80%, or even less or not covered at all. Your benefits will most likely have a cap. Most likely you won’t be able to get all of the therapy you need. There are many people who over utilize their benefits who may not medically need it and sadly that affects those of who need more, especially after brain injury. I was allowed 45 visits a year for ALL therapies which was not enough for the severity of injury I had. So I appealed to the insurance for more services. You can and should appeal your insurance if you don’t agree with it. But just because you appeal doesn’t mean you will get it. Some have a limited amount they will approve as one mom discovered with her son. It was 5 additional visits to the 10 they covered. That’s insane for a new brain injury.
Thinking Outside the Box
You really have to advocate for yourself and not just give up. For instance when my insurance no longer covered therapy, I found alternatives. First we paid for therapy out of pocket. Super expensive and I am still paying for it. But I also found other resources like schools. Schools for speech and language students, occupational therapy and physical therapy. Many schools offer low or no cost therapy to you by a student in their program that is overseen by a licensed professional to learn and practice skills. Where I went, the person running the program was in another room but the rooms with clients and students were recorded and she was actively watching and came in at times to offer further explanation to me or the student. There are lots of resources out there and if you can’t locate them, Brainstorm for Brain Injury is a good place to ask for help.
Don’t Just Accept “No” as the Answer
I learned this recently with a travel insurance claim. I now always buy travel insurance since my brain injury. I was set to travel in March out of the country and Covid started. This was the beginning of March so I thought I was fine but a friend and my doctor said, “No”. I submitted the travel arrangement paperwork and it was denied and I was out a couple grand. Covid got worse and the airline was going to give me a voucher so the insurance was going to deny me. Why did I pay for the insurance then? I had a medical condition on top of Covid being the reason we had to cancel and the airline was not giving me the same ticket we had purchased for the same price. So I started the claim again two months later because I was mad. I submitted my documents again, got a great customer service rep who let me email them to her and she uploaded them since it was a struggle for me to do it. I then got an email saying they already denied the claim and they were closing the case again. I responded and said that it was not just due to Covid, this was also due to a brain injury and I had a doctor’s note and explained my frustration and advocated for myself. A week later, I got my refund check in the mail. So the point of this is don’t just accept “no” as an answer. Try again.
I am still learning daily. Insurance is complicated. It’s messy. No two insurances are the same. There is also so much in the exceptions and fine print. If you find yourself struggling, please reach out to me and I will try to help you solve the problem even if it takes a three way call. Contact Brainstorm, that’s what their purpose is. And it’s mine too. Just because you have a brain injury doesn’t mean life has to be so hard, but as someone with a brain injury, it is. It takes a lot. A lot of trial and error, a lot of resilience and a lot of help if you don’t understand. And it’s ok to ask for help and accept help. I have learned in two years I still need help daily, I am thankful for the people I have around me that can help and the community I have gained. There is an online community you can reach out to as well. You can email me or Brainstorm. We can break it down together. Hopefully you have a great doctor but for the non medical things, my purpose is to be there for others. I’ve been very lucky with the experience I have had in life and in my career to have an understanding of something so confusing and sometimes impossible to navigate. I may not have the answer and may need to do some research, but I am willing to be someone that will try and help because I understand what it’s like to live with a brain injury and it’s anything but easy.
Just remember, you are strong. You are here, and you have purpose. You have support. There are people who care about you and your brain injury and they all want what is best for you because of their experiences with brain injury. You deserve it and you are worth it.