A wheelchair-bound man who is almost completely paralyzed has called out his private insurance company for denying him a $50,000 robotic arm that would dramatically enhance the quality of his life.
Shane Burcaw, 28, and his fiancée Hannah Aylward, 24, opened up about their disappointment and frustration in the latest video shared on their popular ‘Squirmy and Grubs’ YouTube channel.
‘As many of you know, I recently got the opportunity to test out a piece of life-changing adaptive technology called the JACO arm,’ Shane explained. ‘It’s extremely expensive, like, $50,000, and even though it would give me a huge boost in daily function, it’s so far out of our price range that we’re going the insurance route to hopefully get them to pay for the arm.’
The author was born with Spinal Muscular Atrophy (SMA), a neuromuscular disease that causes muscles to deteriorate over time. He has been in an electric wheelchair since he was two years old and can barely move his legs, arms, and hands.
The JACO arm has a three-fingered hand and can be used by people with upper-body disabilities to perform everyday tasks such as picking up objects and opening doors — things Shane currently has to rely on Hannah to do for him.
Shane tested the arm and applied for money for it a month ago, but his insurance company denied it because he is ‘functioning well.’
Hannah admitted she has been stewing about the letter for the past week before reading it out loud to their viewers.
‘Your request for a robotic arm for your wheelchair cannot be approved. We carefully reviewed the information sent by your provider and our eligibility criteria,’ she read. ‘Your request requires notes that show this wheelchair option is used primarily for a medical purpose and that it is the most cost-effective alternative to achieve your goals.
‘However, the information that we received from your provider indicates that you are functioning well. You are managing your activities of daily living and improving with your treatment.’
‘Yeah, pretty soon I’ll be up and walking,’ Shane said sarcastically.
According to Hannah, the letter stated that ‘the wheelchair accessory would be used primarily for convenience’ and it ‘does not appear to be the most cost-effective solution for improving activities of daily living.’
‘I like how we listed escaping from a fire and accessing water, and that is convenient to them,’ she said of the reasons they applied for the robotic arm.
‘What really frustrated me about this is how they positioned it as a convenience,’ Shane agreed, ‘a device that would allow me to brush my own teeth, get myself water, get myself food, open a door in case of a fire, lock my door, hand my future child a snack or a toy, and the list goes on and on. How are those things a convenience?’
The couple pointed out that if they were to hire a caregiver to take care of him when she is gone, it would be ‘exorbitantly expensive.’
They explained that if they paid someone $10 an hour — minimum wage in Minnesota — to be with Shane 12 hours a day, it would cost $43,800 a year.
The arm is much more cost-effective, but they are gonna deny it in the hopes that we won’t appeal it. But guess what? We’re gonna appeal it,’ Shane said. ‘We’re putting together the appeal right now with the help of my doctors and the JACO company.
‘I don’t want JACO to take blame for this,’ he added. ‘They’ve been really, really helpful in helping me put together the materials I need.’
‘This just insurance,’ Hannah stressed. ‘Shane pays for private insurance, and that is who is denying it.’
The YouTuber explained that she wants to go to graduate school and won’t be able to be with Shane to take care of him every minute of every day.
‘I deserve the ability to be able to do my own stuff if a product exists that would allow me to do that,’ Shane said. ‘This JACO arm is so far from a convenience. It’s a realistic need that I have and it disheartens me that insurance is not going to pay for it as of now.’
When the couple first posted a video about the JACO arm, they received offers from fans who wanted to start a GoFundMe to help them raise the money. While they greatly appreciate the offer, they don’t feel comfortable using their platform to ask for money for something they want.
‘There are a lot of people that don’t have the platforms that we have who also could really benefit from the JACO,’ Shane said. ‘To use our platform to ask for that feels wrong.’
Shane and Hannah started dating in 2016 after she watched a documentary that ‘The Office’ actor Rainn Wilson produced about his life and reached out to him.
In the email, she complimented the writer and public speaker on his sense of humor and his writing before admitting that she thought he was very cute. They got to know each other through FaceTime calls and text messages and eventually fell in love.
Shane and Hannah launched their YouTube channel to better educate people about interabled relationships and now have more than 658,000 subscribers.