After I finished university, I moved back home to Birmingham, This presented me with many challenges, including arrangements for my care support. Before I looked into getting new carers and PAs for the year, I had to sort out the care budget and how that differed now that I was back at home.
It was a few months ago now, but I had an assessment worker come to my house and complete an overview, which meant an assessment of my home and my current needs. The woman that came to do the assessment seemed nice at first. Understanding of what my dad and I had been through over the past year, but when the formal assessment started and she had covered the basics, things changed as she dug deeper into the nitty-gritty stuff.
Even after she had heard about my home life and current needs, she tried to manipulate the information to fit a plan that no longer worked for me. The same plan I had in 2014 when I started university at Southampton Solvent University. Yes, it worked back then, but I was 23 now, with a life and a career to think about. I needed a care plan that would allow me to be 23 and enjoy what life has to offer for someone my age.
After completing my my undergraduate degree at De Montfort University, I hope to start writing my blog and my own stories and other material for publication and I am very sure that I won’t be able to do this without a well-chosen PA who has links or similar interests to this to be able to help me on a daily basis for me to be successful. I also want to start looking for a job which would help me earn some money as well as help me towards my chosen career path. I want to have a chance of looking for a stable job which I would enjoy and I wouldn’t be able to get a job, let alone keep it if I couldn’t get out the house as a result of carers only coming in at scheduled times throughout the day and that’s just not fair.
With all this in mind, I kept pushing for a more recent care plan which would be more fitting to my needs.
Pressure to change agency
The Assessment worker scrutinised my current care plan and tried to find alternative ones. One of these alternatives that she came up with was for me to change from AskJules, an agency I had been with for the past five years, and switch to a pre-approved Birmingham agency.
I was annoyed at this. I have been with AskJules for the past five years and I have developed a bond and trust with them. I feel at ease with them, they know me and are always there. I have a strong bond with the organisation which cannot be severed easily. I don’t want to throw all of this away, just because social services are not familiar with Askjules and would rather me use one of the three agencies they have pre-approved.
Choosing Personal Assistants (PA)
I understand it from their side, but I know for a fact that if I was to change to a Birmingham social services approved agency, I would not be able to choose my own carers and PAs.
This is another reason why I don’t want to swap, I want to have a say in choosing my PAs and carers, I am going to have to rely on them to help me, to know they’re going to be there for me, not only on a care level but also on a personal level.
I want to get to know them and then the personality behind the face. I Need to be able to trust them, I’m going to confide in them and I’m going to be putting myself in vulnerable situations and I need to be able to have a connection with them.
I am not just someone who can be a tick in the box on a carer’s rounds, I am an individual with rights and thoughts and feelings! During this assessment, I felt like there were a lot of loaded questions pointed my way. She kept wording the questions and ideas in a complex way, I think she was trying to catch me out and get me to agree to something before I could fully understand what it meant.
I am an individual, not a case or task
It goes back to the same idea, the assessment was treating me like a ‘case’, not an individual, telling me what I wanted as part of my care plan as opposed to listening to what I thought.
Once again I will say, I am an individual, who will not be treated like a ‘case’ or as just the ticket the box, I have a voice. I’m sick of not being listened to and don’t be treated fairly just because I’m in a wheelchair and I need care and support to do particular activities.
I know my own mind, I will tell you what I want and then together we will find a solution. Another aspect of the meeting that I found a bit bizarre was the idea of my care plan being five years out of date would lead me to only having PAs who would come in at a specific time to get me up showered and dressed and then every few hours and toilet me and that is all they would do.
I couldn’t seem to make them understand that I wanted to be free during the day and be able to do whatever I wanted or go out and enjoy myself, which I wouldn’t be able to do if someone just came in to toilet me every few hours. This person couldn’t understand therefore although I’m living at home now, my dad isn’t my carer and he works to be able to keep a roof over heads.
My dad is the sole earner in this house at the moment, after my mom passed away and I require someone overnight and throughout the day to support me. As well as working full-time, my dad sometimes has to work overnight as his job requires him the host various meetings in different places.
Without a full-time carer, I couldn’t have my freedom and he wouldn’t be able to fulfil his job requirements. When the assessment was taking place, I was sure to outline this and stressed the importance of it. But then, the assessment took a turn that I was not expecting. t
Have you ever considered living in a residental home for people like you…
That was not her exact words but it was heavily implied. The social worker inquired whether I had ever thought about moving to residential home for disabled people my age, which would definitely involve me having no control over the different PAs and carers that would come in at specific times in the day and support me as well as not being able to have the Independence of being able to go out when I wanted too.
When this was explained to me and I realised that I would not have any say in the care arrangements if I went to live in a residential home. I realised the art of persuasion was being used, if I did decide to move into a residential home, it would be cheaper for the social services as they would have complete control over everything
Despite all of this, I was very confused on why they were trying to convince me to move into a residential home. They could plainly see that I was safe and happy where I was at home with my dad and that should be all that matters.
Inconsiderate and bad timing
The assessment and overall meeting with the social worker ended on a sour note, from the start of the meeting this person was aware that my mum had sadly passed away a couple of months before and she told me that she was sorry for my loss. However, towards the end of the meeting, this person asked to speak to me alone.
After she tried to push on me the idea of moving to residential living, which carers would only come at specific times in the day, she turned to me and asked have I thought about what I would do if I lost my dad.
For a minute or two, I sat there in shock, I couldn’t believe what she had asked me. To get me on my own to ask me was very strange, her timing was just ridiculous and very insensitive. This was just wrong on so many levels. Why ask me now?
The whole situation was very uncomfortable and distressing. After she had left and after I returned to Leicester from my week at University, I couldn’t shake off the words she had said to me and the feelings that came with it. All week and even now, I am very anxious and distressed on the words she spoke and I have been unable to shake the anxiety and the fear she has left with me. Following this assessment with the social worker, we made a formal complaint and have had a second social worker to come out and speak with my dad and myself!