The elephant in the corner of the room (part 1)

So here I am and it now feels the right time to talk about my brother. My brother the funny, larger than life, caring, sensitive,  geniously talented actor and dancer who just happens to have Down’s syndrome and the journey through a system of day services that has repeatedly tried to label my brother as being out of control because the people who were caring for him were unable to manage and not able to/willing to understand his behaviour because they saw his disability rather than the person and they weren’t willing to learn how to communicate with the person beneath the disability. A system of professionals who always thought that they knew best and that time and time again my family have proved them wrong.

Adults with learning disabilities are among some of the most vulnerable people in society and unfortunately, the people whom are meant to be there to care for them and protect them are doing far from that. 

My brother was born with Down Syndrome, which means that he has a learning disability due to an extra chromosome. People with Down’s Syndrome can range from having a mild to a severe learning disability and they can have physical problems such as heart or gut problems. My brother has a moderate learning disability and has the understanding of perhaps a 3 year old but that is hard to assess because of his communication difficulties. I don’t say that he has a mental age of 3 years old because that isn’t accurate. He is 51 years old so has gained 51 years of experience so it is impossible for him to have the mental age of a 3 year old but he is only able to understand the world probably from the level of  a 3 year old who has been around for 51 years plus he has the body of an adult so it is sort of complicated. He is short in stature, typical facial features of someone with Down’s but physically he is well, despite being diagnosed with a heart murmur when he was a few days old. 

This blog is about his journey through the daycare system and how that has impacted upon his emotional health and his care needs and how it has affected us, his family, who are his voice. 

My brother attended a special school until he was 19 years of age and then he attended the only day care which was available in those days, an adult training centre for people with learning disabilities. He attended there for many years and there never any issues reported. He had his own pictorial timetable, which he could follow himself, and he knew where he was supposed to be and what he was doing at each moment of the day with minimal supervision. They did things such as life skills where they learnt how to do things such as make a cup of tea and a light meal, use a washing machine, wash up the dishes etc, they did creative things such as art and wood work and they had an arrangement with one or two local companies where they would pack things such as nails and screws etc and would get paid £5 a week. This was seen as slave labour by some people, which is was when you look at how much they were paid but instead of giving them more money they stopped the packing at the training centre and so they also stopped the incentive. My brother enjoyed the work and bringing home the bit of money that he did so it was actually dis empowering to him because it wasn’t replaced with anything which was just as or more meaningful or purposeful. People with disabilities need a purpose just the same as everyone else does and probably more so because of the discrimination that they face on a daily basis. It is often hard for people to see past the disability where someone has a learning disability but they all have the same feelings, hopes and desires as everyone else. You can forgive someone, perhaps, who has never met someone with a learning disability before for not seeing this but for the professionals who are working with them to not see this is unforgivable in my book but unfortunately it is all too common place.

Over the few years following this the council began cutting funding to the training centre and the activities that were available became less and less. It was also announced during this time that the powers that be had decided that training centres were not a good place for someone with a leaning disability to go to because they were too big and institutional like, so the government gave local authorities a deadline for closing the training centres and ‘integrating’ the clients that went to these training centres into the community. In theory this sounds a really good idea but the reality is that firstly people with learning disabilities find change extremely difficult as they need routine and continuity and secondly there was insufficient funding made available to enable the transition and ensure minimal disruption to the existing services.

In our local authority they decided to open up smaller bases throughout the city. Some of the clients that went to the training centre were able to get a small job or go to college, and this is what the government meant by integrating into the community, and this is a great idea. However, for a lot of the clients that went to the training centre they had either been going there for so long or their learning disability was too great for them to be able to do paid employment. So the small bases were for these clients. On the surface of it, it sounds like a really good idea as the groups are smaller and instead of doing all of their activities at the same place, they would access more activities in the community. Great if there are the activities to access. 

And then there was the transition period. Our local authority decided to open the bases separately, which meant that there were some staff working at the bases as they opened while there was still staff needed at the main training centre. And I am almost certain that they wouldn’t have any extra staff to help with this phase. It was during this time that my brother started to display some behavioural issues. He was muttering quite a lot, particularly when he got home from the training centre, he started taking linger to eat his meals and he was becoming involved in ‘incidents’ at the training centre where he was either the victim or instigator of mild violence, which was quite a shock to me as I had never ever witnessed him be violent. The whole transition period into the smaller bases took a year and during that year my brother went from a happy relaxed person who was maybe a little bored due to not having as many activities to not sleeping, constant muttering, becoming more stubborn and taking longer with eating plus some outbursts of violent behaviour where he had allegedly lashed out at other service users. It was obvious to me that he was stressed. The professionals, however, could not see the link with my brothers behaviour and the transition of day services. They didn’t look for any possible environmental causes for his behaviour first but assumed it must be internal and to do with his learning disability. People with Down’s Syndrome have an extra chromosome on the gene which is associated with Alzheimer’s, which means that they are at a much greater risk of developing the disease. So my brothers care takers told my mum that they thought that he had Alzheimer’s and were referring him for an assessment. They told my mum this news over the phone and with no explanation about the correlation between the two. So for his assessment a multidisciplinary team from the mental health unit for people with learning disabilities observed my brother and worked with him both on their unit as a day visitor and at the training centre. While they observed him at the training centre they saw other service users bullying my brother and there were some staff around but they didn’t seem to notice what was going on. What was interesting though was the fact that when my brother went to tell someone about what was happening, he didn’t go to the permanent staff at the training centre but he went to the member of staff that had come to observe him from the mental health unit. This rang alarm bells for me as it seemed that my brother realised that he wouldn’t get any help from the permanent staff so he didn’t bother to seek help from them. Also, my mum visited once and she witnessed a member of staff leading a group of clients down some stairs who were all hand in hand as if they couldn’t manage the stairs on their own. My mum said it looked a scene out of one of the orphanages in Romania. To me this said that they didn’t have enough staff left at the base to provide adequate care and would explain why the bullying had started and my brothers deterioration in behaviour, because there wasn’t adequate supervision, and all of this coincided with the transition stage into the smaller bases. This must have been a massive operation to coo ordinate and plan but it seemed like no extra staffing resources had been put into place and this was to my brothers detriment. But unlike you or I when we get stressed and the behaviour disappearing when the stress has disappeared, when someone has a learning disability that behaviour stays with them and becomes a habit so it can have devastating long term consequences and nobody seemed to realise this or, for that matter, care that much. He was just a learning disability, a problem that would more than likely become more of a problem and it was his problem. Not the bullying, the changes in staff as they worked in the bases, not the changes in routine, not the fact that the staff didn’t listen to him when he told them that he was being bullied, it was all his problem and was caused by his learning disability. Anyway, the assessment that he had showed that he didn’t have dementia. There was a meeting, however, and it was decided that his behaviour warrented increased support than he was currently getting so he was given a one to one support when he moved to the smaller base. So in theory things should have improved but they got much worse. To be continued…………


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