This morning I tweeted the following thought:
“Whenever I mention our encounter with Community DoLS, I can guarantee that I’ll get at least 1 reply that feels I need reminding that disabled people need safeguarding from their families too”.
The ensuing discussion went in several directions and Mark Brown joined in the conversation and posted a link to the most recent set of NHS Digital stats on the issue of safeguarding reporting. The link is below but the key figures for me are 23% of harm was caused by family and 32% by social care staff.
For me it posed the question, how many cases of abuse or neglect or exploitation by the State are referred by the State. If they are the perpetrators then I would imagine them less likely to refer themselves than if the abuse came from other sources (including family).
I wish to state (like I did on Twitter) that I’m not interested in setting up a Them vs Us battle here. But I am interested in trying to find a way to equalise the power dynamic that exists that will lead, inevitably, to more families being referred for a safeguarding investigations than the State itself.
One tweeter challenged me to give examples where the State financially exploits learning disabled people. I kept my reply to my own personal experience (which thankfully doesn’t include the familiar horror stories of benefit sanctions, fitness to work assessments etc). I came up with quite a list:
- When Steven was in the ATU, I received a monthly invoice for £118.80 for his contribution towards the cost of his deprivation of his liberty. He didn’t want to be there. The detention was subsequently found to be unlawful. No account was taken of Steven’s expenditure.
- Last year, Steven received a bill in April for £185.00 as a financial contribution towards his care costs. This threw me because the previous year it had been zero. When I checked it out I was told that it is not their policy to carry out a financial reassessment every year but it is their policy to “reset” the expenditure figures to “zero” thereby triggering off a full charge. A committee at the council signed off this policy which can have no other motive than to try and trick their clients into paying for something they may be exempt from.
- In the same month last year I received Steven’s council tax bill. It was much higher than normal. I checked it out and exactly the same thing had happened as I mentioned in (2). The LA has a policy to remove the “disability marker” each year and therefore the disability discount is removed leading to a full charge. Once again, a committee agreed this policy.
- The whole point of being a court appointed financial deputy is to have someone who safeguards the person’s income and outgoings. Yet the disabled person is charged for this service by the Office of the Public Guardian. Before anyone says it, I know that if the State is the financial deputy, the charge still applies but the point is the incapacitated person has to cough up an annual sum in order to be safeguarded against financial abuse.
Those are just four examples of financial exploitation. It needed me (or someone concerned with preventing Steven being ripped off) to stop that happening. If I hadn’t challenged the care charges, the council would have pursued him for a hefty charge that he cannot afford to pay.
Of course, there are other forms of abuse and two personal experiences that still chill me many years later are glaring examples in the disparity in the power dynamic between the State and the family.
Steven was about 13. At the time I was working one night a week teaching counselling at a local college. We asked for and were given five support hours so that someone would help Julie whilst I was out. This was our very first experience of having support staff in our home. Over a period of four weeks a succession of agency staff came for induction and to get to know Steven. One morning after an induction evening the night before we were visited by the social worker. She said that she had received a safeguarding referral from the agency over an “incident” that had happened the previous evening. As had been his routine since he was about 5, Steven used to collect his Toy Story duvet from his bedroom and bring it downstairs to lie under on the sofas as he watched the evening soaps. He would ask Julie or I to sit at the end of the sofa, so his feet were resting on our lap. This was the safeguarding issue. It took ages for the penny to drop. In fact the social worker had to spell it out to us. Even though the support worker had said that nothing was going on, the safeguarding team felt that his evening routine set up the possibility for some sort of sexual activity going on under the duvet. I remember going to the kitchen to wretch into the sink. The safeguarding investigation went on for about five months. It was terrifying. We had to stop Steven’s favourite, calming evening routine. We had to convince the team that we had learned the error of our ways and were able to set boundaries around sexual activity. In the beginning we tried to put the case that there wasn’t and never had been any “sexual activity” under the duvet but that only led to grave concerns about our parenting and threats of removal. It was one of the most frightening experiences ever.
Compare that to the experience we had when Steven was a “day client” at the positive behaviour unit five years later. One day Steven was assaulted by a member of staff. He was kicked three times in the leg and had a cup of hot coffee thrown over him. You’d have thought there would have been an immediate safeguarding alert raised. Far from it. When the social worker came to inform us of the incident later that day, she led us to believe that it had been another service user that had carried out the assault. It was only by chance the following day that we discovered it was the shift leader. I’m not sure if we’d have ever known the truth if it hadn’t been for someone letting the cat out of the bag. The LA did promise to carry out an internal investigation. They might have done. We were told that we weren’t entitled to know the outcome of any investigation for two reasons: (1) Because it was an internal matter, and (2) because Steven had just turned 18, we, as his parents, had no legal status to warrant being informed. I’m cynical but I’m not sure they even carried out a safeguarding inquiry. It was very hush hush if they did. Steven was lucky because one of the agency staff whistleblew and informed the police and in the end the CPS decided to prosecute. Nobody from the council, apart from the perpetrator, turned up in court that day.
Somebody suggested that I apply to join the local safeguarding board. I could but that misses the point. I might hear stories like our duvet story but I don’t think I would hear stories like the staff assault or the charges for the ATU admission. They wouldn’t get within sniffing distance of the safeguarding board. We know shamefully through Connor Sparrowhawk’s death and Richard Handley’s inquest that the State isn’t very good at recognising neglect they have brought about. Even if they notice it, experience shows that they’re going to pull out all the stops to avoid holding their hands up to it.
I don’t know the answer. I’m not saying for one moment that families never exploit their disabled relatives. I’m not calling to people living in their own homes or with their families to be exempt from safeguarding investigations.
All I’m asking for is an equality of power. Far too easy to paint the family as the villain of the piece and the State as the benign rescuer.