Social care is a hot topic globally right now, particularly in East Renfrewshire. But what is it? Essentially it is the support that people need to be an active and respected member of their community. It varies for everyone, but it can be physical assistance with activities such as cooking, eating, and personal care. However, it is also the support that people require to participate in their community. This could be accessing exercise, social outings and the neighbourhood. People may require support to be and feel safe, communicate and to be as healthy as possible. Social care should allow people to meet their human rights.
We first accessed social care when we got a social worker 13 years ago and remained under social work with a named social worker for 11 years. Although for much of that time we didn’t require active input, we could contact them when required. During that time, we have had 4 good social workers. They would listen to our situation and consider solutions to help us as best they could. This was not always about money or budgets, sometimes it was signposting to other services, listening to the frustrations about the systems we must operate in or the difficulties that Angelman syndrome brings to our lives. Always in a useful and helpful way.
There is a learning curve involved in having to be honest about your life, including the difficult parts, with people who don’t know you well. You can do two things; concentrate on only the negative aspects or discuss what a good life would look like, acknowledging that support now, could mean less support in the future. I am not a person to dwell on the negatives. It is an unnecessary waste of energy that could be redirected towards finding solutions. But I also want to preserve my daughter’s dignity: things that happen to and caused by her are not necessarily her fault. We would all find it difficult to maintain our cool if we were continually underestimated, ignored, patronised and misunderstood. In many ways she is very reserved considering the hand she has been dealt. Deep down, I know that focusing on the positives is as much a self-preservation mechanism for me as it is for her. I cannot allow myself to consider how awful our lives might be if we aren’t supported to get her human rights met.
This means I have always discussed the positives as well as the negatives, with her social workers, as it felt like the most natural way to me. I don’t know if it was correct or if the social workers didn’t want to hear about the things that were going well but they seemed to understand and respect that. We kept good relations with them; they could equally hear the difficulties and understand our vision to make things better. This is how social work has been for us and how I believe it should still be. It must surely be how social workers themselves would want to be? No-one goes into the profession to make things more difficult for people.
We do not live in a bubble; we have seen the effects of budget cuts and lack of funding for health and social care in other areas. However, the 2022 local elections gave us some hope. Candidates for the local election spoke openly about their lived and loved experience of disability. Some of these candidates were elected. The new leader of the council had a son that attended the local Additional Support Needs (ASN) school. There was hope that at least he understood what it was like for families dealing with the systems associated with disability and in particular learning disability. This was also a relief as the council had displayed an astonishing disregard for disability with its handling of the decision to cut holiday provision for the children at the ASN school.
That hope was short-lived. The new council approved that the Health and Social Care Partnership (HSCP) would suffer the biggest share of budget cuts. There is a terrible irony that the people who rely on their councillors most are the ones who have the least ability and time to contact them and raise awareness. When you are living with disability there is so much to keep on top of that dealing with things is reactive. Taken together with the inaccessibility of both local and national government consultations, this means that decisions are often made without true consultation of the people affected by the services.
I sometimes wonder about the elected members with lived and loved experience of disability. I cannot imagine allowing any decision that could be so detrimental to people as to change the course of their entire lives for the worse. I know that life, I know that people are living on the edge. I cannot imagine how people, who do not have the support network that I have, manage it. I know that they must and that humans have an amazing ability for dealing with adversity. But I also know that people do have limits and that approaching or reaching those limits is horrific. There are different levels of difficulty for everyone. The public may not be aware of most of this, but for someone who meets people living this life, even if things are okay for you, you surely must recognise how much of a struggle it is for other families.
So, what led to these decisions being made? Is it that the decisions are not really for a councillor to make? Is it that you can live in this life and not notice the difficulties of others? Do some presume that their exact experience must be the same as others? I find it too hard to believe that someone could recognise the problems and make the decision that will actively harm people anyway. Am I too naive?
Two years ago, East Renfrewshire Council decided to bring in the ironically named Supporting People Framework. Since then, named social workers for families like ours have been withdrawn. The social workers have been redeployed to cut social care budgets. For two years, I have watched people who only required a little amount of help have their supports removed from them altogether. The lack of foresight in these decisions boggles my mind.
Of course, I thought these decisions were wrong and I could see the negative impact on the families, but I didn’t speak out or act upon them. Is that because I am also too caught up in our own lives to really care? I guess that must be at least partially true. I can justify it to a certain extent. I am busy, I help people in other ways. Yet here I am, when it is affecting me directly, making time to write about it, trying to think of ways to think of a better way for everyone. It is just as well I have never claimed to be a martyr.
A friend was contacted in the summer to say they were getting a review and then it was cancelled. At this stage it was a relief. If they have been cancelled due to staff shortages, I can ignore the issue for a little longer. Plus, that means they must be first in line, not us. I can relax until they are contacted again. I can relax, as I will have a notice period. Only that didn’t happen. I got the call: we are being reviewed. I didn’t get my notice period.
A few days after that, my daughter received a letter that she cannot read or comprehend telling her that East Renfrewshire Council are conducting a “consultation” because they want to propose charging for social care at the budget meeting. The timeframe (less than two months), the way the letter is worded, and the invitation to attend an information evening (in less than a week!) makes it like a done deal. It does give me a glimmer of hope though. Are they reviewing us to offer support as they recognise that my daughter could be affected badly by these proposed changes? After attending the first information session, however, it is evident that this is not the case. The HSPC are nowhere near that level of organisation, insight, or understanding. It seems it is just a coincidence.
The consultation period of the social care charges has been shambolic. There has not been a single correspondence or meeting that has been accessible to the people who are expected to pay for the charges. It was understandable that the people presenting the information would be nervous. No-one thinks this will be a welcome taxation on people’s benefits. However, the attempts to gather pity for the decision-makers was poorly judged.
So now we have two things to worry about. Less social care budget and less disposable income for my daughter to continue doing the things she requires to make her feel calm and regulated. The week following the meeting about social care charges we meet the social worker who is to review our SDS budget. I am nervous. Our family have been through an incredibly difficult time for the past 5 years and we are just beginning to get back on an even keel. Forget nervous, I am terrified. I know how stretched services work. When things are okay, they start removing the supports you need.
The social worker’s opening statement can be paraphrased as “I came as I am here for a review as you are overdue one and we need to fix a £30 million black hole. We need to make sure you are not taking more than your fair share”. This of course is the share that multiple meetings, and months of planning, determined that my daughter needed to meet her outcomes., Her needs haven’t changed so what now makes it unfair? Don’t worry, she says. Of course I am worried, I say. How can I not be worried when she is potentially coming to cut us off at our knees. She looks surprised, thanks me for my honesty and says she will feed it back to her bosses.
I am confused. In two years, I cannot have been the first person to say that being reviewed is a nerve-wracking experience. The second time the social worker came out she told me at the end that she has heard all she needs from me and whilst there is no guarantee due to the process, she doesn’t think there is any way she can reduce our budget. She then asks if she can have the contact details of people who might be able to support our evidence. It feels like a great relief. The relief is short-lived. The line of questioning from the social worker confused two of my daughters support workers. They were asked what would happen if my daughter was left alone but she was completely safe. To them it felt like an oxymoron. Nothing is safe from my daughter. She is a woman with a plan, she has great ideas of how to fix things. She also has no regard for health and safety, her plans put her and others at great risk. Nothing is safe for her, when she has an idea, she will complete it, no matter the consequences. After the call one of them asked if she could tell her about the time that my daughter escaped a locked house. I agreed. She sent a text to the social worker with this and some other information.
I was left confused by the line of questioning. What is the purpose of saying that everything was safe? Was she talking about my daughter being in a padded cell? That is the only way she would be safe if unsupervised. And then it hit me - was she trying to establish that my daughter wouldn’t die from a health need? Did that mean she would get less support? Surely this was incredibly unfair. My daughter cannot be left on her own. That is not her fault or ours. I was devasted that she could be thought of as less worthy because her care needs were not about physical health. For days I felt like I couldn’t breathe, I struggled to concentrate on my work, and I had a constant feeling of gloom. I decided I would speak to the social worker about it. It felt inhumane to reduce my daughter to a box of need and to categorise her in such a manner.
The next meeting was also to involve my husband. It felt like a battleground, and I was glad I had some backup. The social worker did apologise that the discussions with the support workers had left us with those bad impressions. But overall, it felt like a negative meeting. No-one wants to remember all the ways their child is unsafe. We had to admit that we were far away from the outcomes we had set two years ago. And the social worker seemed less positive than two weeks before that we would continue with the same level of funding. I became, unusually, upset and told her that I would fight them. The idea of having support cut was too much. We had been reminded of how awful things had been. I know that if the supports get cut, we will be back there again and quickly. To get to this stage of almost coping (not managing, or thriving, that is a stretch too far) has been a long two-year process. I don’t have it in me to do it again. I am tired. The mental health of everyone else is still too fragile to cope with any upsets.
Then I had an awful realisation about something that was going against us. The system that I have set up to record how the days are going has a colour-coded system. I have specifically trained support workers to only record things that indicate something is wrong. It doesn’t record all the daily flashpoints. I do this as I don’t want the support workers dwelling on negative things. I want people to see my daughter in a more positive light. I believe that is the right and fair thing to do for her. Or I did, now I wonder if this decision will mean that she won’t be able to keep the supports that she needs to be safe and happy. I don’t have the confidence that this new system is interested in human rights and living a good life. Instead, it’s a Dickensian novel, you need to be the most in need. You are pitted against everyone who requires social care, vying to be the most in need. You are specifically asked “what would be the worst day / episode / outcome etc which is hard to keep having to go back to and remind yourself of these things – why not, how can we make this person’s life better?). It’s depressing and degrading. Yet, you still don’t want to take more than your fair share. It is lose-lose. You get less of a budget and all that entails, or your life is so awful that you have won the right to support. What is worse, you can’t represent yourself and the only person who is doing that for you, is the very person whose job it is to cut your budget.
How has it come to this? What am I responsible for? I am usually okay at being able to answer the feelings of guilt that you are never enough to support your child when they have ASN. I know that she should have support for her communication, education, and regulation. I know I have gone to extremes to ensure that I understand what to do when it became clear that the professional support wasn’t there. Now, I have a new guilt. Maybe I wanted too much. Maybe if I hadn’t learned how to support her communication, she wouldn’t see the stark differences between people who respect her and those who don’t. Maybe if I didn’t teach her about her human rights, she wouldn’t know how little they are being met. And most of all, maybe if I hadn’t tried to be positive about my daughter, we could continue getting the support she needs. With this I feel like have let the whole family down.
Yet, I can argue this guilt away too. All layers of government are blaming the others for the mess social care is in but all of it is a political choice. The council and councillors say that everything is funded in different pots and the carers don’t understand the system. But we understand this it all comes out of one overall pot of money from which difficult decisions must be made. Why must the new £50M swimming pool go ahead? It’s just a made rule that can be overturned for the right circumstances. What will the cost of removing money now have in the future? Social care costs will increase as people will end up in supported accommodation earlier because loved ones can no longer cope. More people will have to rely on benefits as carers are unable to work and manage their caring roles. This is not hyperbole in our last meeting we were asked whether we would consider giving up work to care for our daughter.
This doesn’t feel good to say, and I know many people do give up work, I just don’t think I could. I think it would be detrimental to our mental health as well as that of my daughters if either of us were to give up work. There was no question of asking my daughter if at 18 she wanted to hang around with her parents all day. Why should she get a choice in it anyway?
I am sending this essay to those making decisions. Will it make any difference? I am not optimistic. It is too easy for humans to ignore the plight of others and recognise the damage that they themselves have caused. Still, perhaps someone will read it and feel seen, someone else might consider if there are other options out there. I need to believe this, because writing it certainly has not been a cathartic process.
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