This is a followup to a post I wrote last week, Unlocking a brain Part 1, which was a followup to my post from last year, Can a Brain be Unlocked?
In the last post I promised to “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)”. Let’s see if I can accomplish that below the fold.
If you wish to help, Allison has set up a fundraiser to help recover some of the costs his family has incurred during this past year. If you cannot help financially please share the fundraiser on social media.
In September of last year, I was asked to take over the care of my cousin Chris. In consultation with his mother and caregivers, I made it a goal to find a way for Chris to communicate with those outside of his core group of family, friends, and caregivers. The post from this time last year outlined our goal and sought advice as to how to achieve the goal.
In mid March of this year Chris came to live with me due to an emergency transfer. After a month of looking into the options for his care we decided to use a program which would allow Chris to live with me and receive care and life skills support through a program administered by the State of Texas.
Chris currently receives 84 hours per week of care and assistance from hired caregivers which are paid for by the federal government through a State Waiver Program. The Consumer Directed Option of the Home and Community Based Services Program has worked great. Chris has three caregivers whom earn a living wage even though they only work about 30 hours per week. Chris’ plan has been increased to 96 hours of authorized care per week as of October.
The program allows me to do other things besides care for Chris during the day. I am his lone caregiver 12 hours each night. Thankfully he sleeps well. He does get up once each night for a restroom call and then awakes at 6:30 AM and spends time to himself until his caregiver arrives at 9AM.
During the day Chris and his caregivers spend time with “Habilitation” tasks which includes working on balance, talking on the telephone, interpersonal communications, community integration, social development, and working with his computer. The program allows Chris and his caregivers to work on these items with the hope that he will improve in each area. He has shown remarkable improvements.
Chris’ balance is improving with the hope that some day he will be able to walk without relying on others to ensure he maintains his balance. I have a few things to mention concerning his care in group homes, intermediate care facilities (large group nursing home type environments) and “dayhab" facilities but will refrain until later in the narrative.
Chris has his own phone but it currently is only able to call me if he needs something and I am not available to come when he uses his call button. The phone can also be used to call his mother but he is not aware of that. That allows his caregivers to call her without having to locate another phone in the house. Chris always answers the phone and listens in on most conversations. He also watches the light on the phone and listens in on calls initiated by others in the house. He has been cooperative when asked to hang up.
Chris has improved greatly in the area of interpersonal communications. With the aide of his computer and it’s communications program, Chris can get his point across to those who know how to interpret his signs.
Chris is also developing his community involvement skills to the point where he goes out to community events most weeks. these includes his monthly “date night” where he and his evening caregiver go to a dance set up for special needs individuals. He also attends high school football games and other events.
It many ways community integration and social development are part of his outings. The program lists those has separate line items and I would think they go together.
Much of Chris’ time is spent with his computer. We added YouTube to his system a couple of months ago and he spends a large amount of time watching videos. For some reason he has started to watch videos from a hairdresser. I guess he dreams of being a hairdresser. Allison added Facebook to his system this week.
Chris' Facebook Link.
Chris is also very active. This month was preceded by a Texas Rangers’ on August 31st and will end just prior to a Dallas Mavericks game on Oct 1st. He has also went to two high school football games. Yesterday was a day trip to Shreveport for a neurologist appointment and an evaluation for a new customized power chair. Sundays are for trips to his mother’s home to watch the Dallas Cowboys’ games.
Chris’ has lived in institutional care for the last 12 years. He was in an intermediate care facility followed by three separate group homes. These places had as their goal to maintain Chris where he was physically and emotionally without any attempts to improve his life. When Chris went into the program he was completing recovery from a surgery designed to help him walk but he did not receive any therapy towards the goal of walking. He was placed in a diaper so that no one had to attend to his restroom needs. He had a feeding tube inserted so that no one needed to take special care in preparing his food or monitoring him while he ate. While Chris ate at the table with a spoon up to the point where he went to institutional care, he cannot take anything orally now and I doubt that we can be authorized to work towards him being able to eat again.
One of Chris goals has always been to participate in Special Olympics but my check of his records shows he had not participated in the last seven years. (He will participate in bowling next month and we plan on entering him in at least two events at next spring’s Summer Games).
Chris was able to walk with assistance a few feet when he came to live with us such that he could be taken to the toilet. We took the diaper off on day one and have not used one since. He has had a couple of accidents due to his inability to get attention when needed. Steps have been taken to ensure that he can always get someone to take him to the restroom. (At night, I monitor his room through my TV with the volume set to ensure that I am awakened if he calls for help.) He currently spends an hour each weekday with walking exercises. His walker makes him feel independent and he builds strength using it. He may never get over the balance issue but we are giving him a chance by having him walk as much as practical with assistance, building his strength with the walker, and using a balance ball to get him to recognize the signals from his body. Balance is one thing many people with Cerebral Palsy lack but Chris was able to walk some as a child and we hope he can regain that ability.
I hope to go into more depth as to what our goals are for the next year in the next installment. I hope to get that out next week.
You can watch Chris and his caregivers via our webcam at Chriscam.net. The camera was set up to provide evidence that Chris and his caregivers are performing the tasks authorized under his plan and also to give his family members the opportunity to monitor what we are doing in working with him. The camera and the archives have been made public to show what can be done to improve the life of persons like him with the proper attention.
Again, if you wish to help, Allison set up a fundraiser to help recover some of the costs Chris’ family has incurred during this past year. If you cannot help financially please share the fundraiser on social media.