This is a followup to a post i wrote almost a year ago titled Can a Brain be Unlocked?
The past year we have achieved remarkable progress with Chris in many areas. He is now living with me and his aunt under a generous home care program. His mother, grandmother, and his aunt have invested thousands into making it easier to care for him and providing him with a computer and entertainment systems which allows him control of what he watches and listens to.
Chris has shown remarkable improvement in walking and communicating even though no one expected him to get to the point he is at now and many have called his progress unbelievable and miraculous.
A year ago, Chris was in what is referred to as a Three Person Home in Arlington, Texas while his mother and I lived 200 miles away. In February his mother was told that he needed to be moved so she and I began the process of finding a place for him. Due to Chris’ unique needs all of the places we explored were unfit for his use but we were still looking when another call came from the manager of the group home telling us that he needed to be moved immediately. Since the best place we could put him into was my own home, we moved him in with us.
We were still looking into permanent placement when we discovered the Consumer Directed Option section of the Home and Community Based Services Program and decided to try and keep him with us and to use that option.
It took a month before we were able to get his services set up and during that time Chris’ mother, grandmother, and Aunt Liz spend about $2000 for his needs including starting his Service Providers on the payroll with the hope that the transfer would be declared an emergency transfer and those costs could be recovered. we were unable to get the transfer declared an emergency transfer even though everything we researched said it should have been. There was not even an appeal process available short of filing a lawsuit.
We started with the minimum necessary utilization of the program just to get something in place such that the State supported employees could earn a living wage. In June, we finally modified his program to the point where two employees earned a living wage while a third employee received the same wage but had limited work hours. Next month we hope to have his plan set for the next year such that all three employees receive a living wage while only working 30 hours per week.
Let me back up a bit. By thanksgiving of last year Chris’ mother and grandmother received some funds which i was able to use a portion of in order to set Chris up with a computer system he could use for communications and we were able to get him Speech Therapy for a limited amount of time. I utilized the therapy to evaluate what he needed and found a computer program which would work for him and have the ability to be modified with hardware additions and software personalizations which I believed could be used for him to communicate and eventually control his environment and devices. While I believed that I was following all the correct procedures to get much of the funds expended for hardware recovered, and told his mother I was working such that the funds would be recovered, by the time we were ready to get the funds recovered the organizations we were working with nixed any possibility of recovering the $1500 which Chris’ mother had invested but actually spend almost $800 of Chris’ funds on a software program which should have been paid for with program funds. Two weeks later Chris was completely cut off by that organization leaving us no chance of recovering those costs.
Since Chris has been living with us and he has State supported employees who are dedicated to his care and have the time to work with him he has shown remarkable improvements to his quality of life.
When Chris came to live with us he was barely able to stand in order to be transferred to his wheelchair and wheeled to the bathroom door and walk the five feet to the toilet. Our initial goal was to ensure he could continue that level of mobility so that he could continue living with us and that his caregivers would not be required to carry him or lift him when needed. We were able to get Physical Therapy for him during the second month and the therapist provided us with direction as to how to ensure he maintained that limited ability.
After watching him attempt to walk I decided that a pair of knee pads would help him greatly so Chris and I picked out a pair of knee pads and he started using them. The first pair of knee pads did not help. They caused friction burns where his knees meet when he walks. We spent the next three weeks dealing with those friction burns which had become infected.
We didn’t give up on the knee pad idea. Chris picked out a new pair of knee pads which have worked wonders. The McDavid 5141 knee pads have gel packs which, while designed for cold therapy, were perfectly located to provide cushioning and a slip ability which keeps the pads from generating friction where Chris knees meet. The pads are $50 each and not covered by Medicare, Medicaid, or the program Chris is under so Chris has had to purchase 6 pads in the last three months because the gel packs do not stand up under the pressure put on them when Chris walks and I have not been able to purchase the gel packs individually.
In early June I decided to install a camera system which would allow his mother to watch him and communicate with him from her home. I also set up a website, Chriscam.net, to archive the camera footage since there is some concern that Chris’ authorized caregiver hours may be considered excessive and I wanted proof that his caregivers were providing the services we set up as part of his care plan. The live feed is publicly available in both the raw camera feed and a modified feed with better audio, when Chris doesn’t mess it up, and a better video feed. The archived footage is also publicly available with a chat page to allow public comments. We are unable to view all of the footage and we welcome input from others if they see something of note which appears within the archived footage.
At the same time the camera was set up, and being tested to find the best way to present and archive the footage, Terrae, Chris’ Senior Service Provider, decided to see if Chris could use a walker. We had a “Winnie Walker” from 2014 when Aunt Liz needed it and Chris liked the idea of using a walker. Carmeka, the most experienced and innovative Service Provider, came up with improvements which allowed Chris to use the Winnie Walker. I did not like him using that walker so I got him a safer walker as soon as I could get the approvals and funding.
The walker has worked great. Chris is over the infatuation period, where he used the walker exclusively, but still using it for his walking and exercise therapy period. The therapy period is there to help him build his strength and balance with the hope that he will increase his ability to stand and walk independently.
Chris has also shown great improvements using his communications system. He not only uses it for limited communications but he loves to watch YouTube videos on both the tablet and his television. Chris loves YouTube videos and spends most of his time watching videos. His communications software is set up with a browser window where he can watch them. I set up the grid on his computer with the browser specifically for YouTube with controls for navigation and control of the volume level. We do limit the master volume of his entertainment speaker so that he can’t turn it up to the point where it bothers others in the home.
Many would envy Chris’ computer and entertainment system. He has a Microsoft Surface tablet with mountings such that it sets in front of him while he is in his chair and a second mounting system which can be attached to his wheelchair. He has a high volume Speaker used exclusively for communications. The Speaker is connected via Bluetooth to limit the wires needed and to make it portable. Away from home in noisy environments the listener can hold the speaker while talking to him.
He has a 42” TV mounted such that it can be re-positioned to allow him to watch TV while on the pot. He has a separate amplified speaker he uses when watching YouTube videos. The integrated speaker in the Surface Tablet is almost useless.
He has a convertible tablet/laptop from which he monitors the camera feed. He is the first to let me know when the camera feed goes offline.
He has a second convertible tablet/laptop which is used primarily by his caregivers to monitor him when he is alone in his room and they are in the “lounge”. The second tablet has the same speech program Chris uses. This allows it to serve has a backup in case there is a problem with the Surface Tablet and allows Allison to use it for making edits to Chris communications software. The software programs are linked such that edits to one are quickly available on the other. I have a limited version of the software on my desktop which is used exclusively for making edits.
These items and the software cost Chris, his mother, and his Aunt Liz over $1500. Most of those costs we had hoped to recover through Medicare, Medicaid, or his program but those responsible for ensuring those costs could be recovered failed to perform the tasks necessary.
Part two of this series will cover where Chris is at today and deal more with why he is where he is. (Hint: Institutional care is not set up, nor do they make attempts, to improve their clients quality of life)
If you wish to help, Allison set up a fundraiser to help recover some of the costs they have incurred during this past year.