Here is a guest blog, written by my Mum, Jane, in support of #justiceforLB and the #107days campaign:
Hi, I`m Jane. I`ve never written a blog before, but felt compelled to do so when I learned of the tragic (and preventable!) death of Connor Sparrowhawk, otherwise known as LB (Laughing Boy) Connor`s needs were ignored in an ATU, where he should have been receiving care and support. Instead he was left alone in a bath – despite his epilepsy – where he had a seizure and drowned. I wrote this blog weeks ago, but never felt it was good enough to post – I mean how do you do justice to LB and his amazing family, who are fighting for justice for LB, and for the rights of all individuals with a learning disability?
Each day, when I read through Twitter, I am moved to tears by LB, his Mum Sara, and the terrible thing that has happened. It breaks my heart for two reasons; the first one is obvious – a young man died a preventable death. The second slightly more selfish – my own son is around the same age as LB, and he too has autism. And so each morning when I read the Tweets my my heart screams `it could have been my son` – if things had gone differently, if he had needed to go in to an ATU. My son doesn’t have epilepsy, but from what I have learned, from Winterbourne View for example, unsupervised baths are just one among many acts of negligence that can exist in these places.
Above is an example of not just bad, but horrendous practise – LB was let down in the most unimaginable way. But what about good practise? What does that look like? What should that look like? I believe that the person in question should be at the centre of all decisions made: what do they need? What do they want? What do they like? And they should be listened to, and heard. If the individual is unable to articulate their needs then someone should advocate for them – someone who knows the person well, and above all cares for them, and puts their needs and wants at the centre of all decisions that are made. It sounds obvious, and I am stunned and amazed that in 2014 this still isn’t the starting point for all decisions made with/on behalf of people who have a learning disability. This got me thinking about my past experiences in the work place. I am going back quite a long time, and naively I thought things would be better now, but when I read about Connor Sparrowhawk (LB) and Steven Neary, Stephen, and Nico, I realise that in some places things have actually got worse.
I have worked in care homes for the elderly (another neglected section of society), and nursing homes, as a care assistant. I also worked for several years as a Residential Social Worker, with adults with learning disabilities – who had been resettled from long-stay institutions in to their own homes in the community. Most of these individuals had been institutionalised at a young age; many because they had epilepsy, Down`s Syndrome, autism, and various learning disabilities. Some of the women had been put away for `moral deprivation` – because they`d had a child out of wedlock.
I saw lots of good practise during this time; individuals being asked about what they wanted to do, and being supported and enabled to live in the community as independently as possible. And most of the care staff or RSWs were kind and caring people who had genuine feelings for the individuals they were assigned to support. As far as I am aware there was no deliberate cruelty, as there was at Winterbourne View, and no dangerous neglect as there was in LB`s situation, and yet I was often still very distressed, and angry at incidents that I witnessed during my time as a Residential Social Worker. Below are a few examples that brought me in to conflict with other staff members (and also caused me to be bullied in the work place when I spoke up) of when care that was a million times better than that which LB received, was still completely unacceptable
• I arrived at the home of two very intelligent, and capable ladies whom I supported, who had been resettled from a long-stay institution after about thirty years, in to their own home in the community. The ladies were still in bed, and the member of staff who had done the `sleep-in` answered the door. On entering the lounge I noticed straight away that all of the furniture had been rearranged. I said “Oh, have A and D had a change around?” and she replied “Oh no, I was bored last night when they were in bed so I decided to rearrange the furniture.”
I was stunned – yes we had to be there twenty four hours a day to support the ladies to live as independently as possible, but it was their home! I tried to explain this to her by saying “If I spend the night at your house and decide to rearrange your furniture while you sleep, is that ok?” But she just didn’t get it.
Another staff member (her friend) would take money to buy shopping for the ladies closer to her own home because it was cheaper – she didn’t even take the ladies along, or ask them what they wanted! She decided which meals they would have, and took the money to shop for them at the supermarket she used for her own shopping because it was cheaper. She gave no thought whatsoever to the damage this could do to the two ladies, who had worked so hard to develop decision-making, shopping and budgeting skills. We were supposed to be enabling these ladies, not babying them, but these members of staff (although they had genuine affection for the ladies) had very little respect for them as adults. I think they saw these two women as `sweet` and `cute` but in no way as capable, or even as individuals – it was always `A and D` with no room for autonomy. When I spoke up I was targeted by these women, and their friend (who was the senior RSW – my line manager) who constantly tried to undermine me, which was very unprofessional, and could potentially have put the ladies we were supporting at risk.
• I also supported three young women on a different network, who had very severe learning disabilities, and needed far more support that the two ladies I mentioned above. They lived in a house next door to clients who were supported by the same network, but needed much less support. Each morning when I arrived at the house the staff supporting the individuals next door would be sitting around the kitchen table of the young ladies I was supporting, having breakfast, smoking and chatting with the staff I was about to take over from. Several times one of the young ladies walked in to her kitchen, and then left as there was nowhere for her to sit. Again I was ostracised and bullied because I spoke up against this – the staff weren’t deliberately cruel, or even neglectful in an intentional way, they just couldn’t see that this was the young women’s home – not an institution, not a hospital – but a house where actual individuals lived. They treated the young women`s kitchen as a staff room – meeting up with colleagues, and making themselves at home. Again, they just couldn’t see what they were doing wrong when I pointed it out to them. I tried to make them see that they were being disrespectful to the women, but they genuinely couldn’t see what they were doing wrong – their attitude was `we`ve always done it this way` and `who are you to come in and tell us how to do our job? ` Their resistance to any change in practise was frightening!
The above are just a few examples of many incidents I witnessed in an environment that was supposed to be promoting good practise. The individuals with learning disabilities were cared for, and had many of their needs met, but even the staff with the best of intentions towards them still weren’t able to see these individuals as equal to people who don’t have a learning disability. There was no deliberate cruelty, no intentional abuse or ridiculing; none of the things we witnessed at Winterbourne View. Of course the treatment of the people in the examples I gave was a world away from what they had been used to in the long-stay institutions – living on wards miles from anywhere, and having to share clothes, and even false teeth in some cases! And of course the examples I give don’t even begin to compare with the horrific neglect that LB encountered. I am not trying to compare. I am just saying that when it comes to individuals who have a learning disability, what is often thought of as good practise, isn’t good practise at all. It might be an improvement on previous practise, and in some cases it might be a vast improvement, but that doesn’t make it good. Until people with learning disabilities are given the same concern, care, autonomy and rights as people who don’t have a learning disability, then it should never be considered as good practise. People with learning disabilities should not be expected to be grateful because their basic needs are being met; food, shelter etc. They have a right to have all their needs met; to make choices and decisions about their own lives, their own health, their own relationships, their own bodies – even if those around them don’t approve of their choices – they have a right to make their own mistakes
Will we ever see good practise running consistently throughout the care sector? Answers on a postcard please – and preferably one that LB designed, to raise much needed funds for his families legal bills.
You can learn about the individuals named above through the following links on Twitter: