Personal budgets changed my family’s life – but we had to fight hard to get them

Sally Percival remembers the moment she realised she needed to get her mum Audree out of the care home like it was yesterday.

“I went to visit her, it was half past three in the afternoon. Mum had been put to bed for the night and was choking on her own vomit. Nobody could find her buzzer.

“I know that without my timely intervention she would have died.”

The incident marked the lowest point of Audree’s 10-month stint in the home. It was a placement that Sally says left her mum, a former headteacher and award-winning photographer, “a shadow of her former self”.

‘Fighting and firmness’

Seven years later and Audree’s care looks very different. She’s one of the 16% of over 65s in England receiving community-based social care support who use a direct payment, or part direct payment, to arrange their care. Among under 65s, around 40% receive direct payments.

Audree uses the payment to organise care for her complex health conditions and dementia. The conditions have left Audree almost totally immobile, although Sally says she can still manage to “do her two favourite things – have a gin and tonic and a cigarette”.

“My mum has been successfully supported using a direct payment for six years,” Sally says. “She loves the people that support her and they love her.”

It wasn’t easy to get this support in place though. Audree’s social worker told Sally “quite clearly” that direct payments and personal budgets didn’t work for older people.

“She was really unhappy about our request for a direct payment,” Sally says. “I was even questioned about the motive I had for wanting to bring her home.”

But Sally fought hard because she knew the benefits a personal budget could bring – her 24-year-old son Alex, who has autism and a severe learning disability, has held one since 2001.

“The difference in culture and knowledge of personal budgets between the learning disability team I was working with and the older adults’ team was quite unbelievable,” she says.

“However, this didn’t stop us and after much fighting and firmness mum was offered a direct payment, we organised her support staff, got the house ready, and brought her home.”

‘Inconsistent support’

Having the option to choose and employ their own staff has brought reliability and consistency to Audree and Alex’s lives. Alex has had the same personal assistants for the last 11 years – a stark contrast to the “one size fits all” service he received previously.

“The service was inconsistent and often meant there were a number of different and new people turning up to our house to support him,” Sally says.

“The condition of autism of course needs routine and generally what would happen is Alex would go to his room crying and hide. It was a total waste of time and money.”

The lack of adequate support also affected Alex’s ability to take part in his hobby. He has a real passion for the second world war and is a fanatical re-enactor.

“I used to take Alex to his re-enactments every weekend,” Sally says. “I would transform into ‘Michel from le French resistance’ but he knew it wasn’t really my thing. I became a barrier to him integrating with his peers. He would stand behind me and hide.”

‘Major positive impact’

Now Alex has a personal budget, he is able to help towards the cost of his personal assistants taking him to re-enactments. He pays for all his own costs and the personal budget covers the expenses his personal assistants have, such as hotel bills.

Being able to part in his hobby has also encouraged Alex in other ways – it has given him the desire to read and write, Sally says, and spurred him on academically.

“It’s not easy for Alex doing a lot of the things he does, but his hobby really pushes him out of his comfort zone and has given him so much more self-confidence,” she adds.

“When he goes to his re-enactments, his personal assistant is often just in the background, while Alex takes over. That would never have happened while I was taking him.”

Sally now also has the opportunity to recharge her batteries and have a life for herself.

“Personal budgets have had a major positive impact on all our lives,” she says.

“I have gone back to being a daughter to my mum, which is absolutely wonderful, and I am now a mum to my son. I don’t feel guilty leaving my mum or when Alex goes away because I know they are happy and getting good quality support. Without a doubt they [personal budgets] saved my mum’s life.”