A ‘devastating’ decision to slash a disabled woman’s care package has been reversed by Stockport council following a legal challenge by her family. The 36-year-old has Turner Syndrome - a rare genetic disorder - and is also autistic with severe learning difficulties.
She lived with her parents up until she was 20, but this became difficult for them to manage and an initial emergency placement became long-term in 2005. By 2013, her care package included five days of support in her own home, plus ‘direct payments’ which enabled her to return to the family home, with support, at the weekend.
Being close to her family - including her brother, Grandma and godparents - she ‘loved’ to spend the weekend with them and enjoyed long hikes and other activities, which had become a ‘major part’ of her routine. But last year the council decided to axe direct payments, on the grounds they amounted to double-funding, rather than the level of support necessary to meet her care needs.
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The woman’s parents - who do not wish to be named - launched a legal challenge, saying the decision would have ‘a devastating impact on their daughter’s quality of life’. The council has now performed a U-turn after human rights lawyers Irwin Mitchell urged it to reverse the decisions - or potentially face a judicial review in the High Court.
The woman’s parents believe the review was more to do with saving money than their daughter’s best interests. They said: “This has been such a distressing time for our daughter and the wider family. We’re all just relieved it has been settled and that our daughter can continue to receive the care she needs and the family visits that make up such an important part of her life.”
The family was also told they had used some past direct payments for their daughter incorrectly and received a final notice requesting repayment. They would take her trampolining and horse riding - leisure activities her parents say are important for her health and mental wellbeing.
However help with petrol fees was withdrawn - despite her care plan noting her need to access wide open spaces away from urban areas - as was funding for a carer to accompany her on her family’s annual holiday. Cash for her to have short breaks with a carer was also cut.
In March the woman’s family was told to return £1068.86 from her Direct Payments account, but withheld it on legal advice. The family also withheld payment for increased care charges pending the outcome of the dispute. But after receiving three final notices and threat of court action, they felt pressured to pay the invoices immediately.
The family added: “It was so distressing to be accused of mis-using payments and the disruption to our daughter’s life left us with no choice but to seek legal advice. This complete U-Turn by the council has vindicated us and while we’re pleased with the outcome, this should never have happened in the first place.
"Hopefully now we can put this behind us and work on ensuring our wonderful daughter has the best quality of life she can.” The council has suspended its new Direct Payments Policy and reinstated the woman’s original care package, pending further review. Bills for social care have also been reduced and backdated to November 2021.
The family continued to foot the bill for weekend stays for their daughter so she did not become distressed by the change in routine. “Had we not continued with weekend stays at home, our daughter would have become extremely upset, may have exhibited previous stress related behaviours and could have become very anxious, withdrawn or violent,” they told the Local Democracy Reporting Service.
“In addition, her access to the community would have become limited and would therefore have affected her well-being.” But while they are relieved by the council’s about face, they are still anxious about what might happen in the future. “It has been an extremely stressful time for us all,” they said.
“The council has agreed to instigate a consultation process with parents and care Providers and we await the outcome of this process.”
Kieran McMahon, former CEO of Disability Stockport, said the original decision was a retrograde step that had disempowered people. “I trust the local authority will go back to a more inclusive approach to policy development and fully engage the community as principal stakeholders, as they have done in previous years,” he added.
Mathieu Culverhouse, expert public law and human rights lawyer at Irwin Mitchell says the U-turn ‘could now have far reaching implications, opening the door to others facing similar decisions in respect of direct payments’. He added: “We’re proud to have supported the family in a fight to secure their daughter’s rights, who will now have the assessed mix of independence and care she needs in order to live a full life.”
A spokesperson for Stockport council said the authority accepted that, last year, it may have made some decisions about how direct payments can be spent that were ‘not right’. “We are now reviewing those decisions as a matter of urgency to make sure we are fair, consistent and in line with the Care Act,” they added.
“As a result, we have decided to stop using the existing approach and policy to determine what people can and cannot spend their payments on until we have completed a further review and agreed on a new policy, which we will publish by mid-August 2022.
“We would like to apologise to anyone affected by this issue. We understand changes to support plans, and direct payments can be an anxious experience and we sincerely apologise for any worry we may have caused.”
The authority says it will be getting in touch with anyone who has had a review and/or a decision that resulted in their payments being stopped or reduced. “We listen when people raise issues and concerns, and we hope this will reassure those that are affected that we reflect and respond when we need to change,” a spokesperson said.
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