When people are forced to find about social care and the Care Act because of their own situation or that of a loved one, what they learn really quickly is that social care is about a whole new language and way of doing things. One of eligibility and safeguarding, of assessed needs, the front door and reablement. Care pathways and the customer journey. One that turns your life into a neat package of service delivery.
For some of us, the fact that the Care Act is ten years old is an ‘OMG surely not’ moment. For the majority of people, this milestone will not be on their radar. I conducted some informal research for this piece with friends and family (and Social Care Future has done the same) and the truth is that people don’t know what social care is, never mind the Care Act.
When people are forced to find about social care and the Care Act because of their own situation or that of a loved one, what they learn really quickly is that social care is about a whole new language and way of doing things. One of eligibility and safeguarding, of assessed needs, the front door and reablement. Care pathways and the customer journey. One that turns your life into a neat package of service delivery.
If you Google, ‘what is the purpose of the Care Act’ it tells you that, ‘the Care Act helps to improve people’s independence and wellbeing.’ Wellbeing isn’t a word that most of us use, and independence is a double-edged sword as it tends to mean doing things for yourself rather than choosing how you live your life, but at least the essence of these words is a starting point are about life not services. There’s lots in the Act about choice, control and dignity – all good.
I’ve had my share of first-hand experience of the social care system. Personally, in my twenties when I was deeply immersed in the world of mental health services, then later when my kids came (they were fostered and are autistic) and in the last years of my Mum’s life.
My experience prompted me to start talking about Gloriously Ordinary Lives when my kids were in their teens as that was when things really started being not Gloriously Ordinary. As soon as you enter the slightly strange world of ‘transition’ then the experience for a learning disabled or autistic young person starts being very different from other young people their age who are talking about going to university, getting a job or leaving home – not where their adult placement will be.
The thing is it can work really well. My Mum lived with me for the last 13 years of her life. When she came, shortly after my dad died, she was 78. Fit, healthy, driving up and down the country and doing the Telegraph crossword every day. She was 89 before she needed any support outside of the family and I have to confess to making the call to the duty team where we lived prepared to do battle. I explained to the woman (let’s call her Sarah) who answered that my Mum had got to the point of needing more support than I was able to give on my own and that she wanted a Care Act assessment and then to take her personal budget as a Direct Payment that I would manage for her.
I waited smugly for what I assumed would be a response that demonstrated Sarah didn’t understand the right to a Direct Payment. Instead, I was met instead with firstly a completely appropriate request to check with my Mum that she was happy for me to talk to her, and then a 40 min conversation where she asked lots of great questions, firstly about what was important to Mum and then about what sorts of things she needed help with. Sarah then told me that someone would be in touch within 2 weeks and that they would need evidence of her financial situation. Ten days later Mum got a letter inviting her to an appointment at the local council offices the following week.
We went along and the social worker we met was lovely. She was polite to me but spoke to my Mum, checking with her all the things I had told Sarah on the phone. She then asked Mum if she did indeed want to take her personal budget as a Direct Payment (my wonderful Mother replied, “if that’s what my daughter says then yes!”) and told her what her weekly budget was.
Only at this point did she speak directly to me to ask if I understood the Direct Payment process (I told her that I already managed Direct Payments for both my adult children) and offered help with support planning, which I politely declined. The three of us had a fairly short conversation about our broad plans of how to spend Mum’s budget – a mix of some personal assistant support and help with cleaning – and I agreed to have a draft support plan to her in two weeks.
The whole process, telephone call and meeting, took no more than an hour and a half and within a month of the initial call, the money was with the payroll company, and we were recruiting personal assistants. We had a phone call after three months and a telephone review after a year.
Simple, human, sensible, proportionate, dignified, great value for money. Everything it says in the Care Act.
Fast forward just over a year and we moved house, just over the border into the neighbouring council. This sadly coincided with Mum needing quite a lot more support, particularly at night. She was waking up confused, getting out of bed, and sometimes falling over. I asked for a reassessment and said that what I needed was three nights decent sleep a week. People in our network of family and friends were happy to come and stay in our house one night a week so I just needed an increase in her budget enough to fund two nights a week from personal assistants – about £300.
The response? More than four visits a day (what Mum’s current budget was costed at, even though that was not how we used it) means residential care. Oh, and a full review of her support plan that cut the cleaning element out and reduced the hourly rate that I was paying personal assistants. We were able to support her to stay at home until she died in spite of the system, not because of it.
The thing is that it’s pretty awful for people who work in the system too. Social workers I speak to seem anxious about what they can or can’t do, overwhelmed by the responsibility of ‘safeguarding’ and budget cuts, of getting decisions through panel. They are clear that supporting people to have Gloriously Ordinary Lives is a nice idea but not very practical.
Rather than having wonderful aspirations with and for people, they have to be careful not to raise expectations. We’ve got caught up in tools and models and great concepts like ‘strengths based’ have become distorted. My dear friend whose husband recently died told me that she would do harm to the next person who offered her a leaflet rather than practical help (in the name of signposting presumably).
So, has the ambition of the Care Act been realised? No, I don’t think it has. We don’t seem to be able to allow focus to be on the simplicity and beauty of relationships. On social workers being trusted to talk with people, one human to another and to come up with solutions together that really work. There is a reason that test one for Gloriously Ordinary Lives is, ‘Would I want that for me or someone I love?’
