Skip to main content

Carl – “Just because we appear to ‘manage’ does not mean we are ‘managing’”

My parents were foster carers. In 1976 when I was 4, a baby boy named Paul was placed with us. I cannot remember a time before Paul and I grew up together as brothers.

Paul has severe learning disabilities and autism. He communicates through rote behavior & echolalia learnt through his lifetime. In the ‘moment’ he appears and presents as a man with so much more cognition than is actually the case – he tends to ‘perform’ around professionals. He is always smiling even when sad and he is usually laughing too, but this can be a complete ruse. He laughs when he is happy and he laughs when he is sad. You have to know him to know how he is really feeling.

We’ve always been brothers

I know exactly what makes Paul tick, how to make him happy, meet his needs and quell his constant need for reassurance. I have cared for him, looked out for him and stuck up for him. He might have been fostered – but we really did become brothers.

My wife and I became Paul’s carers

My wife, Michelle, and I have been together since we were 15. In the early 90s, Michelle and I became foster parents and fostered Paul ourselves. We were then persuaded that a care home would be the best place for Paul so that he could learn new skills, and as we were only young ourselves, we agreed.

Paul was placed in a care home for adults with learning disabilities aged 20 in 1996 in Yorkshire. He could not cope with his peers, nor could his peers cope with him. He was highly sedated and his life quality was very poor. Michelle and I now lived in Devon, and Paul came and spent weekends and holidays with us.

In 2010 the care home was investigated for a host of things and it was decided that Paul should come and live with us permanently. We didn’t think twice about him living with us – he was family. Michelle became Paul’s deputy through the Court of Protection for both Health and Welfare and also finances.

We weren’t supported as carers

When Paul moved from Yorkshire to Devon in 2010, no information was passed between the councils regarding his medication, his psychiatry and his care. We were completely let down. We both worked full-time and needed a package of care for Paul, which we believed was being set up, but nothing was in place when he moved in with us.

After Paul had been with us a while, Michelle gave up work to look after him as it was just too much trying to keep us both in jobs and manage his care, and she was also pregnant. It was around this time we were visited by Adult Social care and it was suggested that Paul should attend a day service. We explained what had happened at the care home – that Paul didn’t cope well with others and we didn’t think the day centre would work – but Adult Social Care were very stern. So we felt we had to send him.

Paul hated it, his behaviour spiralled and he became violent towards Michelle. I had to take time off work to help out and eventually in 2012, I gave up my pipe fitting business completely. Things got tougher financially and we asked Adult Social Care for funding. It was agreed that instead of Paul going to the day centre, we could use that money for day trips and outings for him – this really helped, but we still struggled financially.

We were seen as benefits scroungers

No one from Adult Social Care really seemed to believe that Paul could have needs as high as he did, and still live within a ‘family home’. But he needed 2:1 care, we couldn’t keep up full-time work and we needed to claim benefits on top of Paul’s poor care package. I felt we were seen as lying and cheating benefit scroungers abusing tax payers money whilst pretending that we could not work. What we do for Paul is much harder than a day job!

No one told us that Paul was eligible to claim housing benefit, and we put in a complaint about this. No one showed us any empathy or understanding for the situation we were in as a family. No one seemed to want to help.

Direct payments really helped

Paul was put through a series of assessments and ‘observations’ which were very invasive and appalling. But they still did not do anything to help and we seemed to be continually ‘blocked’ from receiving the correct level of care. We asked for a meeting with the higher managers and that’s when we first met the Direct Payment Manager. Our payments were increased so that we could do more with Paul in the community, and we had the choice over how to spend the money – so we could actually do things that helped Paul. We were later told that the amount they had given us was ‘too much’ and that the council ‘couldn’t afford it’. But it remained in place and that was all we heard from there. They weren’t clear at all.

Paul was traumatised by the assessments

Paul really associated professionals with the difficult time that he’d had at the care home back in Yorkshire and then again at the day centre. So when he was repeatedly assessed and visited by social workers, it raised his anxiety levels and he didn’t feel safe anymore. We would bump into them locally and he would say hello but then later react very badly. He started not wanting to go out. An inside Paul is an impossible Paul – he needs to be able to access the community. We all shut down. We all stopped going out in the community and with young children too life became a living hell and this was also very unfair on them. We decided to move area. We had no choice.

We relocated for Paul

We had previously had short breaks as a family to the Isle of Wight and Paul loved it there, so it seemed like a good choice to move there and it would give us a fresh start. We were confident he would feel more happy and safe there.

The Court of Protection agreed that Devon should continue to fund Paul’s current care package until the new one on the Isle of Wight was sorted. We hoped that if Paul was more comfortable and relaxed there, Michelle would be able to manage him on her own and I would return to work as a pipe fitter. The children settled into new schools and we spoke to a social worker about arranging a new care package for Paul.

We asked if they would meet Paul in a neutral environment because of how traumatised he’d been by professionals being in the home previously. We were trying to keep the home as a safe space for him. I spoke with a Social Worker who told me that she was not prepared to meet elsewhere and would come to the house to meet with us all. She said if Paul was not there then she would not be able to complete her assessment and until she had it may become a safeguarding matter if we continued to ‘hold him against his will’.  Therefore she needed to ‘look him in the eye to make sure he was not being held against his will’. I can remember becoming very worried.

The social worker came to see the house, and she did not see Paul as our eldest son had taken him for a walk so as not to upset him. He simply could not have been there. It was too much. But she was not happy about this. She could see him in the distance from our new home she said ‘oh he looks perfectly fine to me & very mobile’. She didn’t listen when we explained Paul’s needs and Devon didn’t send the correct information on.

We were accused of benefit fraud, the direct payments stopped and I was subjected to a gruelling 4 hour interview. We had to move back to Devon, 9 months after we left, because we didn’t get the right support for Paul. It took a long time to get his care package reinstated and by that time we had really suffered financially. We made a complaint to the ombudsman.

We were falsely accused of being a safeguarding risk to Paul

A social worker who visited us held a safeguarding meeting within her department, saying that Paul was left to play with plug sockets and that he was left to look after our children when we went out. It simply wasn’t true. It was devastating to be accused of this. We made a complaint, and they did close the case, but not before they had informed everyone within children’s services too – schools, the police, doctors, midwife, health visitors.

While we were waiting for Paul’s care package to be reinstated, friends and family had to help us out with money and we were using the local food bank.

Things have improved

Eventually, Paul passed an NHS Continuing Healthcare Checklist, meaning he was eligible for health funding as well as social care funding. He now receives a joint package of care. At 70.5 hours a week, it still doesn’t cover the true extent of his 2:1 24 hour needs, but it is an improvement. We also receive funding each year for a regular caravan break as a family which is really appreciated and Paul loves it. Alongside this Paul has a health team who are excellent.

It has taken 10 years for us to get this support so that Paul can live with his family – and it still isn’t the equivalent of the 2:1 24 hour care he was funded for when he was in the care home (that didn’t meet his needs).  We are waiting a decision from the Ombudsman as to whether the 70 hours is going to be back dated.

Just because we appear to ‘manage’ does not mean we are ‘managing’ & just because ‘a need is well met’ does not mean that ‘the need does not exist’. We were told many times that we ‘chose’ to look after Paul and therefore the onus is on us. When faced with the alternative for Paul, which was seeing him in the sort of state he was in whilst in the care home, it was not a choice. He’s family. We have a bond. It’s just normal emotion, and the actions of a person not wanting to watch someone suffer.


Would you like to help other siblings by sharing your own story? Please get in touch.