Home Newly Paralyzed Insurance
COVID-19 Concerns
Post your questions or concerns about COVID-19 on Reeve Connect for our Information Specialists and experts to address here.

Dealing With Insurance To Get What You NEED.

WAGSofSCIWAGSofSCI Moderator Posts: 384 Moderator
100 Awesomes 100 Likes 100 Comments First Anniversary
edited August 2019 in Insurance
Hello Everyone! 

I wanted to start a thread about Insurance and outline the experience we have had along our journey dealing with private and government insurance outlets. I feel like this is could be a HUGE resource to someone who is newly paralyzed but also people who have been paralyzed for a while but do not know what they can get covered with some simple advocating and persistence.

Working with insurance companies can be extremely daunting, and while every company (and the coverage they provide) is different, they all seem to have the same mentality of "what you don't know about saves us money" - after all, ALL insurance companies really do care about is the bottom line. They're corporations who benefit from the least amount of coverage as possible.

I remember when my husband was first in the hospital - fighting with insurance to cover the things he needed was too exhausting to do. At the end of the day, I could barely focus on his care - and I didn't have the mental strength or energy to go to battle and think clearly with his various insurance outlets. However, a month or so later, once things started to settle,  I found that the more research I did, and more questions I asked, the more people I spoke to, the more I discovered. The loopholes, the grey areas, the things they have covered for others and not my husband - all of this was astounding to me. I wanted to get whatever we could from them no matter what, and also make sure that anyone else who  I knew who was new to this injury knew what I had learned.

Here are some things I have learned over the years that I have found are universal to most major insurance companies that I have worked with and inquired with, and learned about through others. How you deal with these things depends - but looking/thinking outside of the box can get you a long way:

- they cover ALL things that are deemed "medically necessary" that have to do with your injury. What is medically necessary? This is whatever a doctor or specialist deems necessary to help you medically. What is medically necessary is different for every doctor and is a matter of opinion based on research. Sometimes its literally just opinion backed up by a doctor's observations. Use that to your advantage. 

- they view any doctor or specialist as god-like. What they say, goes. Don't like what one doctor is saying? Go to another! 

- research, documented evidence and applied action to your specific injury case is everything. Going the extra mile to prove, correlate, and provide examples will allow you to get coverage that you thought wasn't possible.. even if it was initially denied. The proof is in the proof I always say, and what works for you may not work for others - so prove it works for you and you're golden. Getting all that together in writing, along with evidentiary letters of support from a doctor, specialist or physiatrist who has been treating you or your partner will solidify everything. Find a good doctor who is progressive and supports you. 

- an appeal to ANY decision made by any insurance company, if properly supported with evidence unique to your case, will be approved 90% of the time (this is what I have been told by a few previous case managers who I formed a close relationship with "off the books" -  in various insurance companies we have dealt with along our journey.. public and private). These companies deny almost everything at first (due to policy that saves them millions of dollars- they rely on people getting denied, feeling powerless, and giving up), but most have to have legal mandates to provide an appeals process to each and every denial. Usually they will provide you with the steps you need to take to appeal a decision, and if they don't, request it. They all have them - people just don't know their rights. The best part about appeals? Most companies have third party agents outside of their company that work on the appeal requests - this is for unbiased, unmotivated fair appeals. If you have a good case that makes sense, most of the time you will be approved as the appeals agents do not have incentives from the insurance companies. We have gone through extensive appeals 4 times in 5 years, resulting in 100% approval... although this sometimes takes years...be persistent if its what you want and its the RIGHT thing for you 

- the appeal process usually has multiple steps - pay attention and follow through. Don't get frustrated and keep your goal in mind. 

- lawyers will usually do the work you could do yourself (when dealign with day to day insurance advocacy) but cost a LOT. We paid $500 for a specialty lawyer who deals with insurance to look at our case, all the things we have done, and then tell me that I am "doing a great job" and that he would be doing the exact same thing but charge over $200 an hour for it... so needless to say we were encouraged to go about dealing and appealing ourselves, even though it IS stressful. 

Everyone has their own experiences dealing with insurance, this is mine. I have had many sleepless nights over these companies as one moment they're your best friend, and next they stab you in the back and manipulate you. You pay thousands of dollars for insurance of various kinds over the course of your lifetime when you're healthy... so when you need them - they SHOULD be there for you in all capacities. Isn't this the point of getting "insured" in the first place? I hope my experience and advice can help at least one person navigating this seemingly impossible terrain. I will say that you WILL get better at dealing with them. You WILL get somewhere with persistence.. just keep pushing. 

I would love the world of insurance to be less intimidating or complex for those who sustain a life changing injury like SCI and rely on their private or government insurance for their livelihood post injury. The more we discuss this, the more people will feel empowered, the more things will change.

Lets discuss! 

 - Brooke 

ps-if you need help advocating and general advice, email us anytime [email protected]

Your WAGS of SCI
(Elena and Brooke)


  • BrittanyFrankBrittanyFrank Moderator Posts: 65 Moderator
    10 Comments 5 Awesomes Name Dropper 5 Likes
    Insurance is very stressful topic and reality of life - especially as SCI. Before my accident I never went to the doctor, had prescription medications and basically never used my insurance. That changed very quickly after my accident and was a rough transition into adulthood and responsibility for understanding the insurance games. I'm wondering if there are any who chose Medicare over private and their experiences. I'm looking to switch over to Medicare, but wondered if anyone had some experiences and insight to share?
  • WAGSofSCIWAGSofSCI Moderator Posts: 384 Moderator
    100 Awesomes 100 Likes 100 Comments First Anniversary
    I hope people comment on this!! We are from Canada so our system is different, but private insurance is very similar to the states. Our family has Desjardins - Brooke 
    Your WAGS of SCI
    (Elena and Brooke)
  • aoreoaoreo Member Posts: 3
    First Comment
    Can anyone advise on how to adovcate if Medicare denies therapy because their reasoning is that now the patient just needs restorative "maintenance".  Not sure where to even start to advocate.  My mom is 6 months into quadriplegia.
  • WAGSofSCIWAGSofSCI Moderator Posts: 384 Moderator
    100 Awesomes 100 Likes 100 Comments First Anniversary
    You need to work on proving that she is continually making improvements and why. 6 Months is SO early to stop treatment. 

    Here are some ideas: Ask for an appeal document and the process you have to follow from them.. then..include the following 

    - Ask her physiotherapist to give an official report as to how she has progressed over the past few months. Include documented changes and his or her personal feedback as to WHY physio is important for the first 2 years of injury to regain as much as possible. 

    - get her Doctor (SCI doc or Physiatrist preferred) to write a letter outlining why she needs continued therapy and ask his or her to include any documented evidence specific to her as to how physio has helped her to this point.

    - Find valid scientific studies online and include them in your appeal. Site scientific journal articles on WHY physio is important post injury and find ones that include time. There are a ton you just have to search. Reference these studies in a letter from your mother...

    - include a letter from your mother outlining why she needs continued physiotherapy and treatment and how it has helped her from her perspective. Include references to any scientific studies you have found and also tie in the doctors reports and your letter from your physio

    If you have all of this, there is no way they can deny her if the evidence is there and she is improving. The insurance companies are looking for evidence as well as personal feedback. If you follow their exact appeal process you should find success.

    If there is a lot of evidence and backing from her Doctors, and they still deny her, you may have a lawsuit on your hands. 

    - Brooke 
    Your WAGS of SCI
    (Elena and Brooke)
  • Monica.TMonica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    For the past four months I have been battling insurance over getting an in-home care nurse for Charlie (just need one long enough for me to have surgery and a couple weeks for recovery) --- was SHOCKED to learn that Charlie falls into what insurance called "the gap"  ... to old for children's services and to young for adult services .... Charlie is 19 .... children's programs, services and coverage for nurses only up to age 17 and under ...... adult programs, services and coverage do not begin until age 21 and over ..... ages 18,19 and 20 fall in the "gap" for coverage ...... I was told that if Charlie would of had in-home nursing care before age 18 he would still qualify for that service, have continued as he aged - But we never needed in-home nurses before because I was/am Charlie's full time caregiver  ..... I needed surgery back in August, I been putting it off because I can't find any programs for nursing care and can't afford the $14 an hour out of pocket to hire nurses.

    This "gap" = lapse in coverage is outrageous! CHOICES needs to realize that a person can need in-home care at any age!

    *If you are the parent of a minor child under the age of 17 reading this, my advice is do not wait ... even if you do not need them - get in-home nursing care started before your child's 18th birthday!

  • WAGSofSCIWAGSofSCI Moderator Posts: 384 Moderator
    100 Awesomes 100 Likes 100 Comments First Anniversary
    @Monica.T this is horrendous!!!  Something needs to be fixed in the private system.. like we always say.. EVERYONE will eventually need care to some extent... - Brooke
    Your WAGS of SCI
    (Elena and Brooke)
Sign In or Register to comment.