The impact of gaps in adult social care in West Berkshire
‘We are not going to be here forever, and it is ever so worrying’. Families talk frankly about difficulties in securing supported living provision for their loved ones
THE Government is promising reform in adult social care and has pledged some £39bn over the next three years to put health and care services on a “sustainable footing”.
West Berkshire Council admits it is feeling the strain, with a constant struggle to recruit into social care roles and not enough supported living provision to meet needs.
Local Democracy Reporter NIKI HINMAN spoke to two families at the sharp end of adult social care need in West Berkshire.
Carol and Karen’s story
Every parent wants to see their child outlive them, but for Carol and Robert Winter there’s a difference – the fear of leaving their daughter behind. Karen has Down’s syndrome, and is now 50.
Her parents, both in their late 70s and living in Upper Bucklebury, have been trying to find her a supported living place in West Berkshire for 25 years.
“There are very few opportunities for Karen to live in West Berkshire,” said Carol. “We have been through countless protracted discussions over the years and we have had to persevere and persevere. Because we have been able to support her, we have always been pushed to the back of the queue.
“But we are not going to be here forever, and it is ever so worrying.”
West Berkshire Council says 23 people are currently on the waiting list for supported living, but it needs to ensure the people it places are a suitable match for the relevant setting.
“We take into account a whole range of factors, not just location and timing, but critically we also look at compatibility with the people already living at the available places,” said the council’s director of adult social care Paul Coe.
“Many supported living placements are in relatively small settings where people need to be able to get along with each other for a long period of time. We want to ensure the best chance of a placement being a long-term success.”
The Winters finally got Karen a place in a shared home in Newbury just as the pandemic struck. But they brought her back home for the duration, knowing she would not be able to cope with no contact from them. Karen is now back at the shared house, and being settled in again.
“She finds it difficult, and I think if she had moved in her 20s it would have been easier for her,” said Carol. “She has got so used to living with us and it is quite an adjustment to live with other people for her.”
But she is relieved that the place, managed by Sovereign, is long term, rather than the uncertainty of tenure of private housing.
“It is also difficult as social workers come and go,” Carol added. “There is no consistency of understanding at all.
“I appreciate it must be a total headache for the council to work all this out, but I wish they could find a way to coordinate things more and provide more help.”
Karen gets 35 hours of support in the shared home plus a personal spending budget from the council.
But an increasing number of people with a learning disability are no longer receiving any day service provision – again putting the onus on families.
“As a carer you’re not told much by social services, and you feel that perhaps it’s because they don’t have the resources you need,” said Carol.
Working-aged disabled adults like Karen make up half of the adult social care budget. Karen now works four hours a week at Nando’s in Newbury and wants to fit in to society.
“I like it because it makes me feel independent,” she said, adding she also likes going swimming and to the gym with her support worker to ‘keep myself fit’.
“I like my own room,” Karen added. Her dad painted it in her chosen colour scheme and she chose the furnishings and accessories herself. She says she likes the private space and quietness it gives her to watch her TV programmes and listen to her music.
“It’s been really hard to leave home because I am very close to my family,” she said.
The most challenging of cases
West Berkshire Council admits that these transitions are among the most challenging cases they deal with.
“It’s not uncommon for parents to want to look after their children into adulthood,” said Paul. “But then there is a second transition when the parents get older, and need to look to the future.”
Once a child turns 18, they switch into a different social care department – and the council says it is now forming an information pipeline to enable it to accurately forecast needs – and budget.
The most needy in the district cost in the region of £250,000 a year to support.
“We must understand who are the young people going to need long-term support,” said Paul.
“Often this is a very expensive area – complex disabilities are the most expensive with some needing round the clock care.”
I appreciate it must be a total headache for the council to work all this out, but I wish they could find a way to coordinate things more and provide more help
Dawn and Shane’s story
Rites of passage from childhood to adulthood typically look like learning to drive, leaving home to go to college. Perhaps getting a job.
But if your child has special educational needs, it is a different matter.
“He just wants to fit in,” explains Dawn Davies, whose son Shane, now 19, has autism and ADHD.
“He wants to be a chef, and has managed to work really hard to get a couple of qualifications. But now he is 19, and an adult, the support he was getting has fallen off. He doesn’t want to stand out as being different, and doesn’t really know how to ask for the help he needs. And he is finding it difficult.”
It pains her that her child is shown to be different to what society understands as ‘normal’ as he struggles on his course at Newbury College.
She says he needs to leave home now and make a life for himself. Shane agrees.
“I would like to run my own kitchen as a head chef,” he said. “I would like to have my own space, so to move out of home but stay local would be best.
“Life is challenging because of too many responsibilities with home, work and college.
“College is hard because of all of the written work.”
Dawn is critical of the council for letting him fall through the cracks of the system from being a child in social care to being an adult needing help. “Nobody wants to help,” said Dawn, who has her own health issues. “And I desperately don’t want him to fail or lose confidence because of a lack of it.
“He has a job and manages to hold down a college course, but he needs some help to do that. So he needs to be in a supported living environment. I have written to the council, but no one has come back to me for nearly a year. Once you turn 16, that seems to be it in terms of support.
“I don’t know the system well enough, but have been trying to find out, but it is not easy and there just don’t seem to be places for him to go to live.”
The council will not comment on individual cases but says it currently funds around 215 individuals in a range of supported living settings, with around 175 in West Berkshire and 40 outside, mainly in the Reading area. It currently only has 10 places to offer.
“I’ll do everything I can for him – I’m his mum,” said Dawn. “I really worry. What would happen to him if I get hit by a bus or something?”