R**s came home for the weekend on Friday. We have not seen him since 30th December. He likes to be in his flat over the New Year as fireworks upset him, and at his care home, they are able to minimise any startling noise. So it’s a lot calmer for him.
The home went into ‘lock-down’ on the 2nd of January, when one of the staff tested positive. As per the Government guidelines (sic) they were not allowing home visits until there was 28 (?) clear days without any new infections. That changed about a week ago to 14 days, and so he was able to come and visit for the weekend
We had his assessment on Wednesday, which was very traumatic. The Social Worker went through everything with us, and noted everything about him. This should have been done before the funding meeting, but there was nobody available at such short notice, except for the Duty Social Worker. He had little or no knowledge of R*** or his case, so could only go on what he was being told.
The case now has to go to a panel, who will decide if it is an appropriate placement. If it is, and I think we all made a good case, then it goes to a Financial Assessment to see if some of the funding needs to come from R***’s benefits, before going to yet another panel for financial approval. It’s just more worries on top of more worries, especially as this is likely to happen every year.
Work is turning into a bit of a chore at the moment. The Assistant Manager left, and it seems that people are jockeying for the position. To be honest, I don’t think any of them are capable. There is more to a managers job, than simply telling others what to do. The boss has her favourites though, so it is down to her as to what happens.
I’m still half-heartedly looking for something else. This job is getting a little too strenuous for me these days. But I don’t want a job that has any form of responsibility. I had enough of that over the past 50 years. I’d love a job, where I can sit at a desk and tap details into a computer system. I wouldn’t want a phone as I’m not very good with people on the telephone. In fact, I’m not very good with people full stop.
I’ve had a cold since around the 16th of the month. I started with a bit of a sniffle on the previous Wednesday and I did a few Lateral Flow Tests (LFT’s) on the basis that the new Omicron variation had cold-like symptoms. All showed negative thankfully, but by the afternoon of the 17th (Monday), my cold was in full flow. So bad that I decided to ring in sick on Tuesday, which was probably the best idea. I spent the whole day in bed, sleeping which was very unusual for me.
By Saturday, I was beginning to feel much better and was almost looking forward to returning to work on the following Monday. I duly went back, but by Tuesday afternoon, I was beginning to feel bad again. More LFT’s followed, but again all were negative and I had to give in to the fact that either my initial cold had not gone, or that I had a new version. It’s just coming to the end now, ready for work tomorrow. Oh, joy!
Wednesday is not going to be a good day. The trust that funds R***’s placement has decided that they don’t it to be fully funded by them. It has been for the past 10 years, but they now think that the funding should be shared between them and the Local Authority. I find it very wrong, that people make decisions about people, without even really knowing them. But apart from him getting older and becoming more tolerant, he still has the same diagnosis. He has not been ‘cured’ of Autism or ADHD. His medication has been reduced, but that is down to the team he works with.
So on Wednesday, we are having a Zoom meeting with the Social Worker that has been allocated to him. It’s going to be very stressful, especially as he’s been in lock-down since he went back to his residential place at the end of December. Hopefully, he can get home for the weekend, but much depends on how the virus spreads over this next week.
The title refers to the Christmas staff night out. Just after the last night out in September, I ‘predicted’ that the date would be the 18th of December, which is the last Saturday before Christmas. The manager confirmed that the 18th would be the night. Over the past years, our youngest has been at home on the nights they have chosen, which gave me the perfect reason not to go. As I have explained before, I’m not one for social events and dislike eating out with a number of people, that are not family.
With the youngest (RH) now only coming home every fortnight instead of weekly, the 18th falls on his weekend away. Hence ‘no excuse this time.’ It was okay last time, but this time it will be a little different. Two of the people that I got on well with, have now left and won’t be going, but the three people that I cannot stand are still there and will be invited. All the others, I can take or leave them.
It looks like we will be going to the local Italian for their Christmas menu, then on to a local function hall for a ‘Disco’! I think I can just about manage to cope with the meal, but dancing !!! Not these days.
Thursday was a difficult day. It was the day of the youngest son’s funding review. For the past 10 years his placement has been fully funded by Continuing Health (CH). It’s part of the NHS that provides social care for adults who need full time care and assistance. There are now question that are being asked is whether CH should be fully funding this or whether the Local Authority should part fund the placement. This meant, that we had to got through a process called the Decision Support Tool or DST to identify who funds what.
It was very distressing, as RH has not ‘got better’ he is still Autistic and still needs the support he has been getting. What is different is that since the pandemic started RH has become a lot more receptive to changes that have occurred. This has been mainly down to the core team that work with him. The things he has done with them would not have seemed possible five years ago.
He has been to Centre Parcs for a few days, then a week ago he was at LegoLand, Brighton and walked the street of Central London, which was amazing.
When I say ‘… a bit boring …’, I mean that nothing really eventful happened. A few new residents zones installed, new staff, new equipment but nothing startling for about six years. The team and me just plodded along. So as I say, when I look back, it was just a bit boring. Still enjoyed the job and most of the staff were easy to work with and I had built up a bit of a reputation, but that was about it.
Then, towards then end of 2012 rumours started appearing about job/staff changes. We had two members of staff leave and they were not replaced and this started to worry a few people. We were told that they would be replaced in the new year, but that we would have to manage until then. Which of course we did.
Around about this time, the Council were beginning to look at reducing staff to cut costs. Central funding was being cut and departmental budgets were being squeezed. The Council was promoting what the called ‘Early Leavers Initiative’ or ELI. Essentially what this was voluntary redundancy. Staff would leave, get the standard redundancy payment and gain access to their works pension. I thought about this a lot and K*** and me decided that it might be a good move. Leave the Council and get another job somewhere else with a nice lump sum of money in the bank. So in January 2013, I applied for this ‘ELI’. After a few weeks, I received a reply, explaining that I could not be considered as I was ‘too valuable to the service’.
Later in 2013 me and a colleague (one who I had a bit of an issue with) received an email, quite out of the blue which explained that service was being reviewed and that we were part of that review. I queried this ‘review’ with the Assistant Manager who dismissed it as ‘… just something the Head of Service had to do and that it would not affect us …’ His face was a picture when both me and my colleague, G*** forwarded him the email we had received. He still claimed that it would not be an issue and that he would get someone to explain it all to us.
A couple of weeks later someone from HR did come and explain. What was happening was that some of the posts throughout the department were being looked at, to try and centralise some of the functions. the example they gave was that G***, who was our Training Officer would probably serve the department better if she worked within the Training team, where there would be vacancies in the future. The same applied to me, and I would be of more use in the departments IT service area. We were assured that we would still have a job, but it was still a very worrying time and made a mockery of the reason I was rejected for ELI. Not so valuable now, I thought.
It’s been three weeks since my last post, and there have not been any real reasons why. I’ve just been a little bit lazy I suppose. I don’t like writing when there is a chance of being disturbed and with the problems we are experiencing with our youngest son, sitting and putting fingers to keyboard has not been the top of my to-do list. I think I’ve explained here before that Rh*s is Autistic and has several other linked conditions. One of the issues many Autistic people have is routine. Things have to be the same with little or no variation. Rh*s likes to know what he is doing, where and when he is doing it and who with. Changes, even the slightest can lead to anxiety and stress, which often manifests in his behaviour. He currently lives at his residential placement for 4 nights and 5 days a week. He is picked up from home Monday morning and returns Friday evening. It’s taken a long time to get to this stage, and he appears to be happy with the arrangement. He has his own flat and many staff to support him on a daily basis. However, it is now the time to plan his placement for the next year, and this is causing some issues.
I create a planner that shows the nights he sleeps at his flat and the nights he doesn’t. This planner is on his bedroom wall at home and one of his walls at his flat. The current planner ends on the 31st December this year. Since the middle of June, he has been ‘worrying’ that he is not going to his flat next year. Before he can see his dates we have to run it past the representative, of the people who funds his placement and this is where there has been a stumbling block. We believe, that as his placement is fully funded for 24/7 care, that the funders are going to insist on him going 24/7. We, as parents, and the support team do not think he is ready for this yet and we may have some arguments to overcome in the next couple of weeks. The uncertainty has come out in his behaviour, to the extent that he is not wanting to do some of the activities that we know he enjoys. He has also taken to ‘chanting’ about his dates. Every so often and at the moment it seems to be every hour or so he will recite “Friday, Saturday, Sunday” for every weekend up until the end of 2020. This is basically, we think is his way of asking “What am I doing next year?” We think he can actually picture his calendar in his head, rather than actually remembering the dates.
We were supposed to be meeting with the representative for a review of Friday, but the person had got some crossed wires and did not turn up. The meeting has now been rescheduled for early October, but this does not resolve the issue we have. What we and his care manager are now thinking, is that we just go ahead with the dates we are looking at, and if the funders are not happy with that, the issue will be taken to an advocate to speak for him in what they call “Best Interest”. From what I understand this advocate will look at what each party thinks is his best interest and make a decision. Could go either way, but I think that parents and carers know what is best for him more that someone sat at a desk with a financial spreadsheet in front of them. Gong to be a stressful couple of weeks.
About six months ago, I was preparing our Sunday meal when I had an idea. We were having tray bake (we don’t do traditional Sunday lunch type food) which was basically roughly chopped peppers, courgettes, onions with new potatoes and chicken thighs all mixed with olive oil and crushed garlic. I’ve got a picture somewhere but not sure where. Anyway, to the point. I was just about to throw the bit of the pepper that you don’t use, in the bin when I wondered if the seeds would grow. I’ve never had much luck with growing stuff from seed, but I thought I had nothing to lose. Within a week, the seeds had started to grow, and within a month I had nine small plants. Now six months on I have nine larger plants, with flowers and the first showing of some peppers. This has totally amazed me as I never even thought he seeds would grow. We shall see what we will get.
Today is the first day of the 2018 “Leeds Festival” or as it is known locally “Leeds Fest”. It is one of the large music festivals that happen over the year and it runs at the same time as the “Reading Festival”. Both have the same acts over three days. Leeds is held at Bramham Park, which is extremely close to where we live. I have been back in 2011 and 2012 as local residents are allowed to purchase concessionary for the whole three days as part of a compensation pack. What happens is that the organisers donate a number of tickets to the parish council of Bramham, Clifford and Thorner (who are the most affected) and they sell them to the residents at a vastly discounted price. I think this year, the tickets were in the region of £40.00 for the three days in what is called the Guest Area, which is a much better camp-site then the general public get. So we get a few days of traffic disruption, a bit of disturbance during the night from the music and the local area gets some extra funding. As mentioned, I did got to the 2011 festival, and have great memories of dancing to Madness and seeing Ed Sheeran as an up and coming newcomer. There is a YouTube video of a band called “Bring Me The Horizon” or BMTH, finishing their set with a massive ‘circle pit’. The sound is pretty bad but, I can say that I was in the midst of it and it was as scary as it looks. From what I can remember, I was towards the bottom right when you look at the video. The guy next to me, at the time said I was in the ‘wrong place at the wrong time’ and advised me that the safest thing to do was to run !! K*** says that it would kill me if I did it now … it nearly killed me then!
I had a ticket for 2012, but the weather was very wet, and I was not that desperate to see many of the bands so I gave most of them a miss. Although I did get to see Foo Fighters, The Cure and Florence And The Machine, so not all that bad.
And now, in time honoured fashion for ‘Leeds Fest’ … it’s raining !