Jan Walmsley asked local people with learning disabilities and their families to share their experience of adult social care.
Author: Jan Walmsley, Convener Learning Disability England Academic Network
These notes were developed to support the Centre's submission to Communities and Local Government Inquiry into Adult Social Care. They describe some of the problems people with learning disabilities and their families are currently experiencing.
Responses were solicited from local learning disability networks in Oxfordshire and the Learning Disability England Academic Network. There was a mixture of personal testimony and reports to study. The main points are summarised below and then the notes and references are included below.
Enquiry from OXFSN with response 13/07/2016
"Hello all, just mailing this info I got from our local Carers Voice about issues about the RAS.
"I have been given information from a number of sources that people can no longer be given information about their indicative budget as, thanks to the smoke and mirrors of the computerised system, it does not help. They can only challenge the final budget.
"Is it legal not to share the indicative budget with individuals and how can we get some transparency back into how people's budgets are being calculated?
"I have heard that there is now a kind of mini-pooled budget thing going on in supported living in Oxon- so there is resource allocated per house and they then decide how they divide it up per individual, based on their needs. Those with higher needs are supposed to get bigger personal budgets. They say it allows the providers flexibility to shift resources around the house to make it work for all.
"I'd welcome comments on this."
Response
HfT Family Support: "It’s unlawful for the local authority to refuse to share the indicative budget (quotes from Care Act Statutory guidance). Indicative budgets are guesstimates and normally woefully below the amount “sufficient” to meet needs. It’s clearly important that people see what the indicative budget is but if they intend to challenge it we normally advise people to save their energy instead to challenge the actual budget."
I only know I used to have a service at a day centre, and a home help, then it stopped because they said I was too able to need help. The day centre stopped first, then the home help. I have great difficulty doing things like shopping I have to shop online as it adds up for you because I can't add up very quick and don't like having to put things back in a shop. But they charge online £35.
"I have an 18 year old with Down Syndrome. She was transferred to an EHCP (Education, Health and Care Plan) last year. We were looking at colleges when she was 16, and every college I went to asked have you got a social worker? We had never had a social worker. I spent the day on the phone ringing each number I was passed onto, until I was finally given the number that I had rung at 9.00 am that morning. I gave up, then remembered a business card I had snaffled at a conference I had been to. I rang that number, and the lady sorted me a social worker within a couple of weeks. Great, except that was children's services, they came once, discharged and said they would pass my name to adult services. Came to do EHCP, needed social worker input, no joy, no contact between education and social. Finally after shouting and stamping my foot a lot, and ringing them every week for about a month, got an assessment in February of this year, still haven't had the report. Told she is low priority, except that her EHCP is due for review in October, to plan for her whole adult future. Oh also when social worker came round in February, I asked about when we needed to start discussing independent living. Social worker sat in my kitchen and said, 'oh we don't do planned transitions'. If you dump her on our doorstep (nearly literally) we will then find her a placement but it could be anywhere in the country. Other stuff she told us was really helpful, but support....nada. Hope this is helpful."
"I have learning difficulties and Aspergers. I am 39. At the moment I have help from an organisation on Monday and Tuesday afternoons. They help me with tax credits, passport application, dealing with official letters, finding a job. We have got near getting a job, not quite there yet. Without the help I would panic a bit about filling in the forms. I get on well with my key worker who helps me with any questions. This sort of help is what people need if they are to lead an independent life." [Summary from a phone call on July 22nd 2016.]
Email: "My daughter has lived in a shared house for 5 years it is supported living whose previous provider was shambolic to say the least. Thankfully they lost the contract and a new company is in place now. In my daughter’s experience she was not listened to by the service provider nor social care until myself and another professional raised safeguarding issues on her behalf. However this resulted in my being treated like a whistle blower which was a stressful experience. "
Summary of phone conversation on July 29th 2016
H (daughter) has complex epilepsy and poor memory due to ABI. H is in supported living. The original provider was shambolic. High staff turnover, 4 managers in 2 years. The most serious issue was that another resident, L, who gets very angry, would shout and swear at H for long periods while staff listened through a baby monitor. H was frightened of him when in this state and could not pursue her interests, just had to retreat to her room.
H has her own pas. Provider did not allow them into the bungalow, had to meet H outside. V complained and was treated as an intruder. Indeed, staff threatened her with safeguarding for allegedly shouting at L. Which she did not do. And refused her entry unless all residents approved of her being there. V so concerned that offered H to come home. She said no, would feel she had failed.
After a campaign led by parents OCC (commissioner) surveyed residents, families and others when the contract was due for renewal and chose another, far superior provider who are willing to work with families. However, L remains and continues to dominate the household. Staff advise H to be understanding and put up with it. H said to the manager she did not think this was right. If in a workplace or a school, he would be dealt with. Care manager is very supportive, knows the family well. However, all they offer is an alternative home for H, one that is some distance from her activities (farm, horses, Body Shop). She would also need waking night staff, and the indications are that this would not be funded (I think affordable in current place because other residents also need waking night staff). Indeed, why should she move? The answer is that L would be hard to place anywhere else while H is not. So it remains under review.
Layout of house where H lives not ideal. Shared kitchen and lounge means hard to find peaceful space to watch TV. Other points of interest. After ILF closed in 2015, H reassessed and proposed to cut funding by 57%. It took a great deal of work to persuade OCC that their assessment was wrong, but the funding was reinstated. ‘Unless parents shout from rooftops they don’t get much.’
H had severely challenging behaviour as a teenager to the extent that V had to hide all the knives in the house. But could not get help locally. V found a doctor in London with special interest and they found a way to manage H’s memory problems, which had been frustrating her, by writing everything down. Another example of the importance of very active interventions by families.
V has had help from a family friend who runs a successful business. She stressed how valuable this has been.
V in particular is angry that the previous shambolic provider is highly regarded, wins awards, but the quality of care is entirely dependent on the quality of staff; and the care in H’s house was very poor. Does not believe this was a question of money, rather poor management and leadership. (Summarised from a phone call 28/07/16.)
"I just get support for managing my money. Now I don’t get into debt. No, I would not want any more. I prefer to live without carers. Without the Group I would not bother to get up in the morning, I’d have nothing to get up for."
(Conversation, July 24th 2016.)
Participatory research into abuse in Wales (learning difficulties) - http://udid.research.southwales.ac.uk/media/files/documents/2013-03-05/Final_report.pdf
HealthWatch Oxfordshire: A Local Experience of National Concern (2014) – re families’ experiences where relative has autism / mental health / challenging behaviour, and what needs to change. (Copy supplied)
Building Bridges Training (2014) Our Lives Our Research: Small things that make a big difference – people with learning difficulties who do not get any services explain what would help them.
Building Bridges Training (2011) Money, Friends and Making Ends Meet – similar to Our Lives, Our Research.
Jan Walmsley (2015) Final Evaluation of Comic Relief funded Changing Scenes, Oxfordshire Family Support Network’s project to support older carers of people with learning disabilities – evaluation of the impact of a project to support older carers.
The publisher is the Centre for Welfare Reform.
Notes on What is Happening in Social Care © Jan Walmsley 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.
education, intellectual disabilities, social care, Article
