5 years for a wheelchair

I have spent a few years trying to get a wheelchair covered by insurance. In the medical world, a wheelchair falls under the "Durable Medical Equipment" category. I have specific needs and therefore I need a custom chair. This kind of chair falls under another insurance category called "complex rehabilitative therapy."

The wheelchair I have been working to get approved is an ultralight custom manual wheelchair with power assist wheels. I literally know what coverage codes I need. K0008 and E0986 (push-rim activated/power assist wheels).

This kind of chair will allow me to be able to move around my house and maintain some activity, while still having help getting around while seated.

I started with a standard Drive four wheel walker (covered by a very early insurance) with a seat to a four wheel walker. I needed to upgrade so I fundraised for one with air tires (better for my joints). This worked for a bit, but was a bit too tall for me and didn't have enough vibration control for my subluxating joints. So I donated that one when I got an incredible walker (also known as a rollator) donated from a local fellow disabled person. This has been amazing. It is a Rollz motion, and my caregiver can switch it to a wheelchair to push me to appointments like 6 hour long monthly infusion appointments I have been going to that have kept my autonomic neuropathy from getting significantly worse.

But I have not been able to ambulate much anymore on my own in the walker without risking passing out since my POTS and presyncope has been so bad. I was recently hospitalized from seizing episodes that happened after being upright and in the sun for too long, and I have had multiple actual fainting episodes in the past couple of years. So while the walker still works, it doesn’t give me independence in my house that could really help me.

The power chair that I have on loan from a local independent living center (Whill c2) was PERFECT, but it is broken. Plus, the power chair has become too burdensome and heavy to lift in and out of areas or cars for medical appointments, and is too heavy for my caregivers.

I meet the qualifications for the wheelchair I have been trying for 5ish years to get. I need a chair to help with mobility-related activities of daily life (MRADLs).

In order to get a wheelchair (DME/CRT) covered under most insurances you need:

1. Doctor standard working order  (SWO) with relevant diagnoses*, stating ability and willingness to use equipment, suitability of house, and types of MRADLs *in your house* that the wheelchair would help you be able to do.
2. Physical therapist or occupational therapist evaluation
3. Vendor to help you get the CRT
4. All of this within a certain timeframe*

*for complex rehabilitative therapy you need either specific neurological diagnoses or “Other disability or disease that is determined through individual consideration to require the use of such individually configured products and services” NCART 2014

CMS power wheelchair articleCMS manual wheelchair article

CMS manual wheelchair bases

CMS LCD manual wheelchair coverage

CMS LCD power mobility device coverage

CMS wheelchair accessories

Thank you to a random person on the internet with a google document who helped me understand a ton of the above.

The process of getting this wheelchair has been challenging. I have cycled through 3+ insurances now.

Prior to having Medicaid HMO (with HMO plans you are likely only able to get certain contracted providers/equipment without lengthy prior authorizaiton and medical necessity) I had PPO insurance (you may have a larger network of providers/vendors), which was likely why I had been looking at different vendors and went through the chaos of trying to figure out how to meet the CMS/above requirements through the process below:

When I was with insurance #1, #2, and #3, I contacted the medical facility #1 I had been referred to by my doctor’s office. They refused to see me simply because I have POTS and hEDS and they said I would not qualify for a wheelchair. Yes, I told them I have hip dysplasia and neuropathy. They still gave me a firm no.

I have had three (maybe more) doctors agree that a wheelchair is medically necessary. They have written SWOs (standard working orders) for various custom/lightweight manual wheelchairs. I had the order, I then went to find specific PTs or OTs who were certified to evaluate for wheelchair per CMS rules to no avail. I found one person (maybe in a different state?) willing to evaluate out of pocket via telehealth. I could not afford this. I spent months getting responses from OT/PTs saying, essentially, “sorry, no,” that they didn't have specialized training to evaluate for a wheelchair or didn't take insurance.

Then someone recommended trying to go with a wheelchair seating evaluation center. So I tried to do that. This seemed easier!

I now have medi-cal, which I’ll refer to as insurance #4. I looked up other facilities that did wheelchair seating and evaluations rather than trying to find an individual OT/PT. There was medical facility #1, medical facility #2, and medical facility #3. I asked my doctor to refer me to medical facility #2, since I figured I would once again have issues with medical facility #1.

We got approved for the first appointment at medical facility #2 for an occupational therapy evaluation! So I went to an appointment over an hour away for an in person visit in January. I had a huge flare up from the sun and drive and needed help from my caregiver to get to the bathroom and to get to the car. I experienced post exertional malaise from this appointment. The occupational therapist at medical facility #2 agreed that I qualified for a wheelchair upon evaluation/with my diagnoses (I think autonomic neuropathy/peripheral neuropathy is the one that works, though I also have hip dysplasia with FAI and other things) and actually wanted me to get a power chair with tilt and recline rather than a custom lightweight manual chair with power assist. Medical facility #2 then set me up for a subsequent appointment with themselves for occupational therapy and vendor #1 so we could get to work on choosing and fitting the wheelchair.

I thought everything was good to go.

Then, my insurance denied the subsequent occupational therapy appointment with medical facility #2.

My claim was denied. Even though I had been approved for that previous visit with them.

My insurance had instead authorized a physical therapist to work with me (medical facility #X) for the ‘services that were requested.’ I sent medical facility #X an email to inquire; and they informed me they do not do wheelchair evaluations. I forwarded this email to my insurance for my appeal. I tried to argue with insurance #4 that they only have hand occupational therapists and pediatric occupational therapists listed as being in network in my appeal, so they should approve this person for OT since they are uniquely able to evaluate me, but this was ignored.

I called medical facility #3 and they checked into my diagnoses and agreed they would be willing to evaluate me for a wheelchair with a referral. So I was going to try to ask my doctor for a referral to them.

However, at this point, insurance #4’s case management informed me there was nothing they could do and the appeal for an occupational therapy evaluation with medical facility #2 had now been closed. 

I know at this stage it still may be possible for me to do an independent medical review, but I’m not sure if it’s worth it.

So insurance #4 were now calling trying to connect me to other medical facilities. None of them explicitly say they do wheelchair evaluations on their websites. These are acute rehabilitation facilities that usually work with people coming out of the hospital from stroke.

None of these facilities were listed as being in network on my plan, so I do not know how these either suddenly got a single case agreement for occupational or physical therapy or were just conveniently hidden on the plan’s website.

A case manager with insurance #4 informed me that I could see:

• medical facility #4
• medical facility #5
• medical facility #1 (the one that refused to see me because of POTS/hEDS)

I called medical facility #4 and they said they would be able to work with me for occupational therapy and a wheelchair evaluation and they don’t just deny people based on specific diagnoses. Yahoo! However, my PCP (Primary Care Provider) has already found it impossible to refer me to a rheumatologist at medical facility #4 because they only accept referrals via Epic. Yes, my PCP has tried calling them directly. So I don’t know if I will successfully be able to be referred there.

I called medical facility #5 and they informed me that someone had recently called asking this question (probably the case worker for my insurance) and so the group chat at their practice was asking if they did wheelchair evaluations. Great. That sounds like they do wheelchair evaluations all the time (sarcasm). 

So now I am likely going to have to get a sham physical therapy evaluation by this provider (who knows if they will agree that I need a wheelchair or not) so I can get a referral and the approval for vendor #3.

I’m not going to deal with medical facility #1 again since they essentially refused service to me due to hEDS/POTS. (You can tell I am bitter about this)

So I will be trying to work with vendor #3, not vendor #1, which is one of the two duopolies (which i’ll refer to as vendor #1 and #2) that manage most wheelchair orders, but vendor #3, because a few weeks ago I learned that vendor #3 is the preferred DME vendor for my insurance. I had literally never heard of vendor #3 before then. 

I worked at an independent living center and managed people who helped people get wheelchairs. I have disabled friends who use wheelchairs. You’d think I’d have heard of this vendor in the 5 years that I’ve been working on this or maybe even had googled it, but nope. Face. Palm. I feel really silly for not having known or had access to this information. Or somehow I missed googling this for 3 years.

Vendor #3 says they have “ATPs” (assistive technology therapists) but these likely aren’t physical therapists or occupational therapists. It’s also likely that vendor #3 will still order through thru duopoly vendor #1 and #2. 

So I’ll do all this, and I’ll let you know how this goes. It will likely take another in person eval with my PCP, a sham PT/OT eval (even though I just had an OT eval), and then… get denied again? Because I just reread the coverage articles, and just like I thought, in order to get an ultralight manual:

“The beneficiary must have a specialty evaluation that was performed by a licensed/certified medical professional (LCMP), such as a PT or OT, or physician who has specific training and experience in rehabilitation wheelchair evaluations and that documents the medical necessity for the wheelchair and its special features (see Documentation Requirements section). The LCMP may have no financial relationship with the supplier.” 

So the ATP of vendor #3 won’t suffice even if I also have a PT/OT eval, the PT/OT themselves have to have specific training and experience in rehabilitation wheelchair evaluations.

SO unless I magically get referred to the impossible to get referred to medical facility #4 OR one of the providers DOES have that experience (Even though they had to ask the group chat IF anyone does wheelchair evals at that facility at all) ... I don’t think this is going to go well. More delays, and more being stuck in my bed.

I’ll try to write an update when I have one! Seems like I'll have to have at least 2 more in person appointments before we order a custom chair.

But to those trying to get a wheelchair/complex rehabilitative therapy approved, check who is your insurance’s preferred DME vendor before you spend 3 years wandering through chaos like me.

(Am I doing it wrong? I welcome ideas. Feel free to email disabledisplacement@proton.me)

If you are able to and interested in donating to the author's ongoing attempt to stay housed/fund essentials while they await SSI/SSDI reconsideration, their fundraising page is givebutter.com/KeepKCHoused