Tag Archives: local authority

I had falls with my baby daughter in my arms. It was very scary – #100days100stories

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.

Proud mum smiling at her three-year-old daughter
Soña with her three-year-old daughter Natalie

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.”

Devastating news

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.

Couple in their thirties talking at a table
Soña and her husband, Adam

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.”

Taking control

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.

Two women having a conversation on a sofa
Karin, a regional response worker from Scope, with Soña

“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.

Sona and Mary with Dor, their support worker
Sona and Mary with Dor, their support worker

“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  stories@scope.org.uk if you’d like to get involved.

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

 

Amanda’s story: Caring for a disabled child and supporting other parents

Guest post from Becky, who works in Scope’s fundraising department.

Being based in Scope’s office in London, it’s easy to become detached from the day-to-day reality of what life is like for disabled people and their families.

AmandaAmanda and her husband Neil found their lives changed forever when their daughter Livvy was diagnosed with autism and severe learning difficulties at 22 months. A freelance journalist at the time, Amanda had to change direction and, in her own words, she was given “a new path”.

Amanda now works part-time for Scope as the Coordinator for Face 2 Face in Brighton and Hove.

When we sit down in her living room and start chatting I am immediately struck by Amanda’s resilient character. As well as Livvy, now 13, Amanda has three other children aged three to 11, works for Scope and is a governor at two of her children’s schools.

But despite her obvious strength, I’ve no doubt that things must have been very difficult for Amanda at times.

Livvy developed epilepsy aged five and has tonic seizures every day which Amanda says are “really horrible”. This means that Amanda and Neil have to monitor Livvy during the night, taking turns to care for her.

Recently Livvy has had to spend more and more time in a wheelchair, and has lost some of her communication skills. But it is the spontaneity of Livvy’s seizures which seem to have the biggest effect on Amanda, and it is the only time during our meeting that I can sense any vulnerability in her.

Family holidays are out of the question as it would be too overwhelming for them to take Livvy away overnight. Amanda tells me that she would be really nervous about something happening, and so they use some of the time Livvy spends in their local hospice, Chestnut Tree House, as a safe holiday instead, with the family going along to stay with her.

Amanda says that getting support for Livvy from her local authority has not been difficult, because Livvy is so severely disabled. But this is not the case for a lot of the parents she meets – many of whom are struggling with the system, and have to fight for everything.

Amanda is a powerful spokeswoman for these parents – definitely someone I would want to have on my side if I was a parent of a newly-diagnosed disabled child.

When I leave the family’s house I feel uplifted by Amanda’s story. Her outlook on life and appetite to achieve positive change for disabled people reminds me why I chose to work for Scope.