What would you do?
Imagine wakening from a deep sleep to find yourself fully conscious but unable to move any voluntary muscles save for the muscles that control your vertical eye movements. You can see, hear, smell, taste, and even feel the bed sheets against your skin. However, you are unable to speak or make any vocalizations at all. You are totally disconnected from your external world in a real sense. You may appear to be in a coma to others although you are quite capable of understanding their speech and actions. You are, in essence, locked in your own body. This scenario is not a fantasy that Rod Sterling would have written for a Twilight Zone episode but a recognized, though rare, neuropsychological syndrome.
It is called Locked In Syndrome!
Brett Walls age 51 is kind and gentle man who is a husband, father, grandpa, uncle, brother and friend. On Wednesday February 27, 2014 Brett had three strokes and two aneurisms which caused severe damage in the brain stem, in the “pons” area. The command center. This has ultimately resulted in what is called Locked-in syndrome which is a rare neuropsychological disorder. Its primary features are quadriplegia and paralysis of the cranial nerves except for those responsible for vertical eye movements.
Right now Brett can see and hear, but his only way to communicate is to use his eye movements. He understands exactly what is going on around him but he is trapped inside his body.
This is sadly the Step-Father to a former co-worker and friend of mine. I’ve watched her family fight through this only through Facebook. While the outlook for most with Locked in Syndrome is not good, and recovery is unlikely, and little more than eye movements were expected. But this man has fought with the help of his family, friends, and community and has beyond hope, begun to recover. Imagine. Having the trach removed, slowly regaining some ability to speak, even eat a little.
But what would you do if then your insurance decided you no longer needed intensive Hospital care and would be sent home. This is what has happened to Brett. The therapy he needs to recover…they don’t seem to think he needs.
He is fully aware of what’s happening around him but locked in his own body, paralyzed. The therapy he needs to continue improving is within reach but his health insurance is refusing to cover it. The family of Brett Walls got a letter Friday from United Health Care that said he was ready to be discharged from Drake Hospital and coverage would stop Saturday. It said that level of care, acute care, was no longer needed.
The problem is the ‘what’s next’ is very uncertain. Tuesday Brett Walls was able to move his right fingers and show arm resistance. His family was told when he entered Drake Hospital in the spring after a series of strokes not to expect even that. When Local 12 saw him a few weeks ago starting to breath on his own it was a good thing medically. But United Health Care said it now means he needs to be discharged. If the family wants to get him more care they have to pay out of pocket.
Brett’s wife, Gayle Walls, said, “Although he’s made progress and beaten the odds and we’d love him home ASAP, he’s a long way from that point.”
Brett is fully aware of everything around him and communicates with eye blinks and a chart. He still has limited mobility and needs a feeding tube for most of his nutrition. Gayle thought she had the solution for the next step, taking him to a skilled nursing facility. But their policy called for 60 days of coverage. After several appeals she was denied this step.
“They deemed him custodial care, maintenance only. He’s ready to go home,” Gayle said.
The insurance company has denied the skilled care saying he would not benefit. Gayle said a hospital and one specializing in locked-in syndrome in Chicago felt Brett was a good candidate for rehabilitation therapy.
Vicki Harris said that after recovering from locked in syndrome 25 years ago she was given six hours of rehab a day.
“He’s right there and I don’t understand why they are denying him therapy,” she said.
Harris had much less movement than Brett. Gayle said her husband worked his whole life and paid for health insurance, “And he did so so if the ground would quake beneath him he wouldn’t fall into that hole. I feel they’re pushing us deeper.”
United Health Care issued a statement that said, “We recognize the devastating nature of this diagnosis for Mr. Walls and his family and we are working closely with them to provide additional support and make sure his family is prepared to help care for him.”
Read More at: http://www.local12.com/news/features/top-stories/stories/fight-recover-turns-into-insurance-battle-man-lockedin-syndrome-14633.shtml?wap=0&
I’m often scared of what my insurance will and will not cover when it comes to my own health needs. Often times insurances are not always so accommodating mental health medications, and have often been left with either no coverage on a new medication, or insane co-pays. I’ve paid out of pocket for medications, $150.00 for just one medication. I couldn’t imagine being placed in this position by the insurance you’ve paid. That’s supposed to be there for you when you do get sick, when you need the help. It seems in truth United Health Care would much rather have money than actually help those they insure.
All I can do is hope that this post will reach others. That maybe somehow if enough people know and share this story that it might help my friends family.