Imagine being trapped in your home, alone, knowing you can’t safely care for your two small children. This was Soña’s experience last year, when her funding for a support worker was cut overnight. She has shared her story in an interview as part of our 100 Days, 100 Stories campaign.
Soña, who has cerebral palsy, was struggling to care for her small daughters, three-year-old Natalie and Mary, aged one.
A support worker visited two hours each day to help her get out of the house, lift Mary, and take Natalie to nursery. It made a big difference, but it just wasn’t enough. Soña’s condition was getting worse and she was worried for the safety of her children.
“I cannot use my left hand at all, and my left leg is a few inches shorter than my right which makes walking difficult,” says Soña. “I’d get so tired just trying to walk from place to place, and I would lose my balance.
“I couldn’t go out with the children alone – I’d end up overturning their pushchair, and it would be dangerous.”
When Soña asked for extra support from her local authority, she was given shocking news. An official explained there had been a mistake with her case – she wasn’t entitled to any funding any more.
The family’s support was cut overnight. Soña’s husband Adam works 14-hour shifts as a delivery driver, so she was left at home alone with the children every day.
“I knew that this was not right,” says Soña. “Mary was only about nine months old, and I was starting to have major back problems and spasms.
“I was having constant accidents – I would fall several times a day and get slammed against the door or the wall. I dropped Mary a number of times, which was very scary.”
Struggling on alone
Soña tried again and again to explain why she needed support, but was repeatedly ignored. One professional suggested that if Soña couldn’t cope, Adam should give up work and become her unpaid carer.
“There was no compassion whatsoever. You’re made to feel like you’re making something up. Why would you make it up?
“I felt very vulnerable, here by myself. I was really upset and stressed. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.”
After months of frustration, Soña called Scope’s helpline and spoke to one of our advisors. Realising it was a complex case, the advisor referred her to Karin, a regional response worker.
“I was quite desperate by then,” Soña says. “My situation was getting worse, and I felt like no one wanted to help me.”
Karin came to visit Soña at her home and they talked through what had happened. She drafted letters, contacted experts to ask for legal advice, and accompanied Soña to meetings with the authority.
“We worked together very closely. Karin was always there to help, or to find someone to help me. She constantly reassured me I was doing okay.
“It kept me going, basically. Everyone kept shutting me down, and I was feeling like: maybe I don’t deserve this. To know there is someone out there who actually does support you made a big difference.”
When Soña finally decided to take legal action, Karin helped her apply for legal aid. Soña found a solicitor to argue her case.
“It took six months, but the outcome was absolutely mind-boggling,” she says. “I ended up getting 30 hours’ worth of support a week, far more than before. I couldn’t believe it. I’d been told for so long that I didn’t need anything.
“Now my carer comes for six hours a day to help me get the girls ready for nursery. We can go out and do the shopping, or take Mary to an appointment. I don’t feel like I’m a prisoner in my own home.
“Without Karin, I would still be stuck at home by myself, struggling. You need support when you’re in this situation, you can’t do it alone.
“I was made to feel like getting social care was a privilege, but it’s not. I need it just so I can have a life.”
If you’ve had a similar experience with social care, you can make a difference by sharing your story as part of our 100 Days, 100 Stories campaign. Please contact us on email@example.com if you’d like to get involved.