My recent experience is as family carer for my brother who has a profound learning disability.
With the exception of a few short windows of time, with some wonderful carers, his general quality of life and safety over 14 years within the social care system has been appalling. He’s filled the whole ‘Eye Spy’ checklist of abuse [every form], neglect and general injustice. I believe he is more vulnerable than most because of the profound nature of his intellectual disability – literally no voice and not valued.
His only saving is that he is one of the lucky ones; he does have a family to try to be a voice on his behalf - however powerless an advocate I feel too!
The latest ‘story’ I believe has funding cuts at the core – however, no one will ever acknowledge this agenda… because it's unlawful.
My brother recently had to relocate to a completely new town when his residential care home of 13 years closed very suddenly. The County Council cuts meant Social Services no longer placed individuals in care homes as they were too costly. As a result his home was in a process of deregistration, to become supported living. However it suddenly was deemed ‘financially unviable’ and notice served on the 3 residents living there.
Appropriate vacancies in his home town were non-existent.
With the threat of him being placed in a nursing home for the elderly [he was a very young 52!] and not even somewhere for people with learning disabilities, I found him another place literally 7 days before he was forced to move – he met his new housemate for about an hour! The new home (supported living) was 25 miles away from everything he had ever known and his roots for 52 years.
Overnight he was parachuted as if onto a new planet – knowing no one and with nobody who ‘shared his language’ or understood his needs. Everything was alien to him.
I would never cope with that degree of change, even with my ability to keep in touch with friends or travel back to my ‘hometown’ whenever I chose. My brother had no options.
He has high support needs and his funding package included Waking Night support.
This support enabled him to maintain a good sleep routine, it responded to his unique pre-verbal communication style and offered support to use the toilet through the night in order to be fully continent [without pads].
The day he moved into his new home we soon discovered what we were told was a ‘misunderstanding’ and rather than Waking Night support as was expected, sleep-in support was planned. After a meltdown [from me] and rapid calls to previous provider etc - Waking Night support was instated.
However it was clear even from the first review meeting with social worker and provider, that my brother’s needs were being described differently and his funding package was no longer secure.
They suddenly started describing it for the first time as an 'enhanced transition package' that would be cut back. The Social Worker referred to the new budget figure that had already been set by panel [not disclosed] – regardless of my brother’s needs not changing. There was talk of ‘freeing up’ funds for more daytime 1:1 support if he didn’t have Waking Night support. This felt like blackmail and didn’t relate at all to my brother’s needs - or to my expectations and aspirations of what I knew had previously been achievable outcomes for him.
The new provider organisation refused to recruit Waking Night staff, reasoning as this support ‘was being cut anyway’, there would be employer cost implications or staff redundancies. As a consequence from the start my brother’s support worker team was reliant on agency workers on a daily basis. This was obviously not ideal, it was unsettling for all – for my brother and his new housemate and, a challenge for staff working every day with unfamiliar and inexperienced agency workers. In addition staff were required to work both nights and day shifts to cover the rota - again not popular!
Long and the short of it
My brother has made great progress – particularly considering such changes to every aspect of his life. His sleep pattern with Waking Night support has been re-established over several months and his night-time continence has improved vastly. However the Waking Night support was not yet personalised or responsive enough to match his current and very individual communication style and as a result meant he had some nights each week where he was incontinent and still wearing pads.
Despite this clear progress and us identifying more responsive and less-restrictive, next step approaches to his support, Social Services [together with the care provider] decided the Waking Night support had not enabled him to be fully continent in the time period. They would, therefore, change his package to sleep-in support - despite knowing he had been fully continent [without any need for pads] at his previous home.
Clearly ‘the professionals’ [social services and provider] do not share my values for my brother, let alone as a person who has undergone immense loss and change through no fault of his own; neither do I share their appallingly low expectations of him, with such limiting outcomes, disrespect for his communication style and complete disregard for his dignity.
As an ‘expert by experience’ of my brother throughout his life and with a knowledge of what works well for him – I believe we are still in the very early days of him adapting to such momentous changes to every aspect of his life. By nature of his profound intellectual disability and complex needs, his rates of progress are going to be be more reliant on support that is truly personalised and likely to be slower than someone more able. In his case chances of success were made especially more difficult, as support staff have only just [after 10 months of supporting him], accessed training around how to appropriately support his communication.
Interestingly, ‘the professionals’ agreed with my suggestion that if we ‘removed funding from the equation’ and focused solely on my brother’s needs and abilities, we would likely be having different conversations and agreeing different next steps. His needs have not changed and sadly they remain unmet.
Coincidently huge savings were made overnight - literally!
As a result of the huge loss and changes from moving home, my brother lost skills and lost his confidence as a communicator. He stopped initiating or attempting to communicate because everything in his life had changed; the consistency of support, the acknowledgements to his communicative attempts and the expected responses he was familiar with, had all disappeared.
He has lost confidence and his very established skills to vocalise as a means to communicate his toilet needs. His important daily routines were different and without meaning to him. Instead of my brother taking the lead to vocalise/alert others when he needed the loo [as was familiar and established], staff ‘toileted’ him hourly, sitting him on the loo until he used it. He was no longer experiencing the physical sensation of a full bladder, to alert him he needed the loo and so he lost the need/reason to communicate.
The new support staff team are absolutely fabulous – I would have picked them myself from choice. However, they are not experienced in working with someone with the degree of need or with the early stage of communication presented by my brother. They had no training to recognise or interpret his very individual communication style or understand his sensory processing challenges. Sadly too, despite being a provider organisation that prided itself on person-centred working, that practice didn’t include me sharing my experience or insights of my brother for many [too many] months. Staff were learning about my brother the long way.
At night times [until he regains his previously established communication skills] he currently lies awake or very quietly vocalises and waits for staff to go in to him and ask him if he needs the loo – at which point he vocalises, sits up or gets out of bed to confirm Yes, he does need the toilet. If no one comes in, he is forced to become incontinent – an act he is very aware of. As a consequence of being incontinent, he does vocalise … at which point staff come in!
I cannot bear to think of him knowing he needs the loo during the night while staff are sleeping and having to consciously wet himself. I also want him to get out of needing to wear incontinence pads at night. I have been assured sleeping staff will ‘sense’ when he is awake and wake themselves to go in to support him to the toilet.
He is very unlikely to ‘complain’. He has learnt to expect it, because so much has been ‘done to’ him over his years in the care system – that’s what life is like.
The publisher is the Centre for Welfare Reform.
Care Cuts: Indignity & Uprootedness © Anonymous 2016.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
disability, intellectual disabilities, social care, social justice, Story