I hate Mondays. For the past 18 months or so, Colin has been doing so well that we hate to see him go back to Colin’s Castle on Mondays. Our week is defined by when Colin leaves on Mondays and when he comes back on Fridays. We look forward to the weekend more so now than ever. Colin does too. I don’t think that he minds going to Colin’s Castle on Mondays that much, but he REALLY likes coming home on Friday.
It was about 18 months ago that we started Colin on N-acetyl L-cysteine, which is an old amino acid formerly used for Tylenol toxicity but now has found uses in Autism, Alzheimers, Cancer, only to name a few. After the initial period when we instituted this med, Colin’s behaviors moderated so much so that now I call him “Mr. Sweetness”. Gone for the past 18 months have been any incidents of violent or aggressive behavior. We are so thankful for this. We love Colin unconditionally, but now there is no reason not to love him. He SMILES. He hadn’t smiled for years. He smiles A LOT now. He is truly Mr. Sweetness. So every Monday, we are sad to see him go for the week. When he leaves, there is a huge empty feeling, but knowing that he will be back on Friday gives us reason to make it through the week.Read More
Last week on January 22nd, the Alabama Department of Mental Health Associate Commissioner for Developmental Disabilities Courtney Tarver visited Colin’s Castle. This was significant since the folks in Montgomery had been all but ignoring me for going on two years now. Mr. Tarver is new in the job, and I really appreciate the fact that early on in his tenure he decided to visit. It was significant because at least he had an open mind about the concept of Microboards, and how a Microboard operates. I appreciate his visit even though I don’t expect any sudden changes in the way we are funded. I do think, though, that something is likely to change within the next six to nine months in the way the ALDMH allows people to self-direct their services. This is essentially what we are doing now. What happens now is that all public funds which are allocated for the care of Colin are funneled through a third party provider of services which in turn pays our employees. Only problem is, they skim 37% off the top. That is a hefty profit for an organization that does no more than payroll management since we do everything else. We find our employees, we train our employees, we comply with the Nurse Delegation Program to include training, we maintain all records on site, and manage schedules. We do everything except cut the checks. What we need is to minimize the $$ that are skimmed off the top so that we can pay our employees better. All of these point I made with Mr. Tarver. I think that he listened and I am hopeful.
I thought that it was time for a major revamping of the website, so here it is. I am still tweaking it a little, but I hope that y’all like it. The website has been hosted for awhile on GoDaddy.com, and it continues to be. I am not too happy with the pageloading speed, though. I’ll see about moving the host if it continues.
We were going to have a baby boy. I looked forward to tee ball games, passing my boy the football, teaching my boy to drive, celebrating his college graduation, and all of the other things that parents of normal, healthy children enjoy.
Twenty four years ago today Colin was born by emergency C-section. That inauspicious start to life foretold years of challenges, struggles, disappointments, and the inevitable acceptance of the fact that Colin would be different. For life.
But I love him; as much or more than I would have if he had turned out differently. He is my life. God placed me on this earth expressly to take care of Colin, of that i am convinced.
Happy Birthday Colin.Read More
Well, its been about four weeks into it and we are settling in to somewhat of a routine. Keith picks up Colin on Monday morning at our house, and then sets off for the day, sometimes combining an excursion into the pickup – either to the park for a walk, or with Pat to the doctor. Colin stays the week until Friday when Perry drops him back off at our house. I don’t really know how Colin feels about the situation, but all along for months we have been telling him that Colin’s Castle is his own house and that he is a lucky guy to have his own place. Some nights have been touch and go – to bed late and waking often through the night, and some nights have been great, to bed without problem and sleeping straight through until the morning. I think and I hope that he is getting used to spending the week at Colin’s Castle, then coming home for the weekends.
We don’t really know what Colin’s preference would be in terms of where he would like to be. Sometimes I get a guilty feeling thinking that we are abandoning him. For instance, I had to go out to Colin’s Castle on Monday to install some light blocking curtains for Colin’s bedroom, so I got to be with him for a little while. When it was time to leave, I kissed him goodbye and told him that I would call him later on in the evening. As I drove away I remembered that I had to check something at the house so I turned around and went back. Colin had come out and was sitting on the curb in front of the house near Perry’s car. As I left again I told him that I loved him and again drove away. Thinking that he didn’t care much, I looked in the rear view mirror only to see that Colin had come out from behind Perry’s car and was watching me drive away. Needless to say, I choked up. A lot more is going on in Colin’s head than we give him credit for. While again suffering a pang of guilt over leaving him there, I quickly choked back the tears and came to the conclusion that I always come to – that this is best for Colin, especially if it works long term. Much better than leaving him in a group home, and much better for having a plan for his future. It is hard, for us and probably for him too, but we’ve got to make this work.Read More
Going from the allocation of 31 hours of personal care to 113 hours of personal care hours takes a lot of planning. First, obtaining commitment from Perry to switch jobs and come work for us full time took a few days, then settling on the schedule for the 3 aides took some time. Then planning for contingencies and already scheduled time commitments elsewhere took time, delaying the start of Colin’s occupancy. Colin will spend about 70% of his week at Colin’s Castle, Monday through Friday. He will be picked up at our house on Monday mornings and return to our house Friday afternoon. Of course we will spend a lot of time during the day visiting him to help with his transition.
I think that we are finally good to go, and the transition will take place as of next week. We still have some loose ends to tie up like Colin’s Medication Administration Record and Plan, completion of necessary training, obtaining necessary records, compensation for the employees for expenses and transportation (which of course will not be covered by Colin’s Personal Care allocation), and how we are going to keep track of everything.
Thus far over the last three weeks Colin has stayed overnight at Colin’s Castle at least a couple of nights a week, and has seemed to do OK. The real test will be when he has to stay without Pat or I there with him. We should find out Tuesday AM how he does.
Paul has shipped Colin’s bed from Connecticut, and it should arrive mid-week. I can’t wait to see it and set it up. After it is set up I will take some photos and post on the Colin’s Castle facebook page. Paul instructs me that if it doesn’t work out to burn it (made of old barn board), but I think that it will be just fine and a unique addition to Colin’s home.
As of right now we still have to utilize the third party Oxford Health, but we will continue to push for at least self-direction of services. We have found our own staff and handle the schedule and deal with staff absences, so we are managing everything, not Oxford Health. When will Alabama Department of Mental Health come around to our way of thinking? Typical government bureaucracy.
We have cobbled Colin’s Castle’s funding together and will make it work until a better arrangement is realized.
Wish us luck!
Today we learned that the DMH has increased our funding for Personal Care Hours. This is great news as it will allow us to increase the number of hours covered at Colin’s Castle. It is bad news in that the people who work for us will not get the greatest hourly wage. We need to be allocated the equivalent dollars so that we can self direct and self manage the funds. With self direction we would be able to pay our employees a better wage. The reasoning is simple: if you pay more you are more likely to get people who are loyal; you can attract better educated people. Many times in the news you hear of group home workers or mental health workers who abuse and neglect their developmentally delayed clients, and if you look into who these people are, they most likely are people making minimum wage or transient workers. We don’t want that for Colin. We want people who will take care of him and love him and respect him, and stay with us for a long time, It is really difficult to find people like that for minimum wage.
We are thrilled to learn of the increase in funding, and now are scrambling to come up with a plan. We will start to house Colin at Colin’s Castle several nights a week as well as every weekday. We will need to find another employee to cover some of the hours. And we will continue to work on obtaining more control over how the money is spent. For now though, it is a major step ahead towards the eventual plan for Colin and Colin’s Castle.Read More
Today, Alabama Department of Mental Health Commissioner announced her resignation. I don’t think that she was particularly effective anyways, whether due to having her hands tied by the present Governor, or by incompetence, it matters not, she is gone. The new Commissioner is Mr. Jim Reddoch, whom I have already written a letter to. Perhaps he will be more open minded than previous commissioners. If anyone would like to help by writing a letter, the address is below.
Also, Colin is going through a rough time right now with deteriorating behaviors, so prayers would be apprectiated.
MR. JIM REDDOCH, COMMISSIONER
ALABAMA DEPARTMENT OF MENTAL HEALTH
100 North Union Street
POST OFFICE BOX 301410
Montgomery, Alabama 36130-1410Read More
Colin is not feeling much better. He had some lab work done last week that showed his amylase slightly elevated. What does that mean? Does that mean nothing, or does it mean that his amylase was higher and coming down? Or does it mean that it was on its way up? He seems to have a little more energy but is still obviously uncomfortable, and is still not eating much. He had lost 4 pounds as of last week. At this point we really don’t know what is going on, but we know that something is not right.
As far as the funding battle goes, we are not giving up. We are considering bringing suit against the Department of Mental Health, but we are still thinking whether that will be worth our while. The basis of our suit would be that we contend that the DMH can not discriminate against Colin’s Castle, Inc., since there is one other Microboard in the state that is receiving funding.
Right now we are limping along with what money we do get, heavily subsidized by me of course. We do have a pretty good day program going for Colin though, as our Aides Keith and Perry spend a lot of time with him. Keith especially spends time doing chores, having Colin work on sight reading, counting money, and personal hygiene.
Keep the faith!Read More
About a month ago I wrote that we had heard from the DMH Commissioner regarding funding our Microboard. The news was not good, and her letter to me was quite confusing and incoherent at times. In that letter she suggested that we meet with the people at the Regional office of the DMH here in Birmingham. Today, we did meet with her people who were quite uncomfortable meeting with us. They had received no direction or guidance from DMH nor the Commissioner herself, and didn’t really know what to tell us. They were very sympathetic to our cause and were obviously uncomfortable meeting with us, almost as if they thought that the Commissioner had gaffed us off onto them.
Also, we are fearing that Colin is again afflicted with pancreatitis. He is not eating and is not acting himself. It is very difficult to extract any information from him about how he feels, or what hurts. Tomorrow he has a Dr’s appt. and we will ask to have his amylase checked. We would appreciate prayers for Colin.
Keep the faith.Read More