Tag Archives: support

“I want to have a job, get paid, go out, enjoy myself”

Nusrat is 27 years old and recently started a job as a Lab Aide at the Sainsbury’s Wellcome Centre, with help from Scope’s Future Ambitions employment service.

For Learning Disability Work Experience Week, Nusrat shares her journey in to work and her goals for the future.

When I was at school I was thinking –  I want to get paid, I want to earn my own money and that’s what I want to do for my future. I went to college, then when I finished college I went to Project Search which finished in July. Project Search gave me training to help me get a job. I also did First Impressions, First Experiences with Scope. I liked it. I made loads of friends there. We did mock interviews, learning more skills, that kind of thing. That has helped me.

Work experience helped me get a job

I was going to Newham’s employment service and a Workplace advisor told me and my mum about work experience through Project Search. I thought it sounded good, that’s why I wanted to do it.

The work experience was good. I liked working with my tutor and job coach from Project Search. I liked working in the kitchen, giving patients tea and coffee in the morning. I liked working in the canteen, emptying the bins and cleaning the tables. I learned new skills. I learned to give food to customers and how to make tea. I learned to use the till. I did that with a colleague. I worked as a host. I was learning to be a housekeeper. I didn’t like that, it made me feel sick. I was also in an office, typing, answering phones. I enjoyed it. I liked it. We finished at the end of July and had an awards ceremony. My mum came. She said she was very proud of me.

I learned about listening to colleagues and managers. I learned how to make tea. I learned about working with people. I also learned about interview skills. Doing the work experience helped me get my job.

Nusrat sat at a long table smiling, with a cup of tea

Support to do my job

Jodi from Scope told me about the job at the Wellcome Trust. I wanted to come here and work in the lab. I came here for an interview. I was brave, confident, and polite. I liked it. Jodi was there too. I love this job. I want to do it, I enjoy it and I like my colleagues.

I like Jodi because she’s really friendly and very helpful. She supports me so my mum knows it’s okay, she’ll look after me. Jodi comes in to visit me at work. It’s nice to see her and I like working with her. If she doesn’t visit, I can just give her a text. It’s nice to have someone to talk to.

It’s difficult for me to travel. A taxi comes to pick me up and takes me home, takes me to work. Jodi has sorted things out for me. If I didn’t have the taxi it would be difficult for me to do this job.

My hopes for the future

I’ve never experienced bad attitudes. I’ve worked with some good people. It was hard to find a job at first though. I don’t know why, I’m not sure. I was looking for jobs but they wouldn’t hire me. Employers need to change their attitudes and respect other people.

I work hard. Working with other people has improved my skills. In the future I’d like to be able to go out with my family, go shopping, help out at home. I have lots of friends and that makes me happy. I go to a friendship club to meet other friends and I enjoy it. I want to have a job, get paid, go out, enjoy myself. This is what I want to do for my future.

If you would like to share a story about work experience or employment, get in touch with the Stories team.

“It’s nice knowing my hard work will make a difference” – Caroline takes on the Great South Run

Caroline is doing the Great South Run for Scope in honour of her friend, Vicky, who lost her leg in the Alton Towers Smiler crash.

For this blog, she chatted to us about her reasons for doing it, her journey so far and her determination despite her own injuries.

My friend Vicky was involved in the awful Alton Towers Smiler Crash where she lost her leg. She has had an incredibly tough time adjusting to her new life but has shown outstanding courage and bravery. She has overcome so many barriers and inspired thousands of people.

Despite her own heartbreak Vicky has helped me so much. Her courage has given me courage.

Vicky has sadly faced criticism and trolling online, which does get to her. I want to show her and other disabled people who have to deal with prejudice just how much support they have. It was after having a chat with one of my close friends, that I decided I wanted to do more for charity and for Vicky.

Why I’m supporting Scope

I chose to support Scope because they do such incredible work supporting disabled people and their families. They also campaign for equal rights which I think is amazing. I work as a teaching assistant, working with disabled students at a college in Cornwall. It’s an incredible job but sadly I see the prejudice they face every day, so the work that Scope does is very close to my heart.

caroline-2You’ve got to believe in yourself

Running or walking 10 miles doesn’t come naturally to me, but I know I can do it if I work at it. With help from my friends I have done lots of training for the run.

I have foot injuries so to run it would be very difficult. walking will be tough enough but I am determined to jog some too. I know that I can make it. You’ve just got to believe in your own abilities.

I organised a big fundraising event in my local pub

Tyacks Hotel have been so supportive and cannot thank them enough for all their help. I got so many incredible donations from so many local and national companies.

With all the amazing support from my family and friends it was a brilliant night and we raised £471 in just 3 hours. I was so pleased that I could do this for Scope and Vicky.

Some people didn’t think I’d be able to get great prizes or thought that it wouldn’t raise much. But I emailed a lot of companies, put myself out there, and got so many incredible prizes. The determination to help my friend was all I needed.

It’s nice knowing my hard work will make a difference

I get to help amazing charities and have an opportunity to do something great for myself and others. I feel like my hard work will make a real difference. Knowing it’ll be tough only makes me more determined to do it. I am very excited and just know it will be an incredible day.

My advice to anyone out there looking to take part in an event or raise money is don’t doubt yourself, we can all do things that we never expected.

If you feel inspired by Caroline and want to support Scope by taking part in one of our events, you can read more here. You can also sponsor Caroline here.

Recruiting personal assistants means I can live my life how I want to – Nadia

Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.

She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.

I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.

With support from my team, I can enjoy a busy life

I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.

I like to recruit personal assistants myself

I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.

I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.

I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.

Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.

Nadia on a night out with a group of female friends all smiling

I’ve had moments I will always remember

In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.

Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.

I was so proud to win an award

This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.

If you have a story you would like to share, get in touch with Scope’s Stories team.

 

I published a book so others can walk this road with me

Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.

She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis. 

Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.

A day I’ll never forget

There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.

Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.

“I’m afraid it isn’t good news.”

‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.

“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.

“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.

I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.

“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.

How had I missed my baby struggling inside me?

How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?

What kind of mother was I?

Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.

“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.

“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”

Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.

Our future plans were erased

It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.

A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’

A different outlook

I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.

Win a signed copy! Ts&Cs

Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.

Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book. 

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.

Helping with the extra costs of disability: our new money information hub

Following the Extra Costs Commission, a year-long independent inquiry into the extra costs faced by disabled people, we’ve been working with the Money Advice Service to develop the information on our website so it has a greater focus on the needs of disabled people as consumers.

The Extra Costs Commission found that disability-specific information can be hard to find on the web unless you know it exists. As a result, we’ve created a new area of our website to provide impartial money management and cost cutting advice to disabled people.

We hope that this new hub helps to filter useful information and that our online community offers a space for disabled consumers to share shopping experiences and tips.

Extra costs of disability

On average, life costs you £550 more a month if you’re disabled. These costs make it harder to save and increase the likelihood of falling into debt. Here’s how our new hub can help:

Managing your money

To help manage the extra costs of disability, here are a few positive steps you can take:

Bank accounts, credit cards and loans

As well as free and impartial money advice, our new money section features video guides on how to choose a bank account and access to online tools that can help you compare prices.

Savvy disabled consumers

We’ve also got money saving tips on a range of consumer issues, including:

Visit our money hub to find out more, or share your own money saving tips on our online community.

“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports. 

If I can help even one parent through difficult times, it will be worth it

Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own. 

Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.

My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.

Rahna and 15-year-old Husna, a wheelchair user, outside their house
Rahna and her daughter Husna

Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.

There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.

How I felt

My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.

I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.

Four female audience members applauding
Rahna (second from left) at the service’s launch earlier this month

I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.

And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.

Why I became a befriender

Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.

You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.

I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.

The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.

Group of befrienders holding their certificates
The newly-trained befrienders

I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.

If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.

We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.

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.

“Just because Barry’s got a set of wheels doesn’t mean his ears don’t work!” – #100days100stories

55-year-old Barry got a new lease on life when, with Scope’s support, he moved into his own home. Scope’s Stories Officer Nick Duquemin met Barry and his Support Worker, Judy, at Barry’s home in Hereford.

Here, as part of Scope’s 100 days, 100 stories campaign, Judy and Barry discuss life, changing attitudes and Barry’s beloved Hereford United FC. Barry has cerebral palsy and has complex mobility, learning and communication difficulties. 

Barry and Support Worker Judy smiling in his home
Barry and Support Worker Judy smiling in his home

Judy: Barry will have lived here 15 years this year. I’ve worked for Scope for 16 years – it’ll be 17 years this year. I was a support worker when Barry moved to Hereford. I wasn’t on Barry’s team, but I have known you since you moved to Hereford.

Barry: In 1999.

Judy: Barry has his own tenancy now. It’s a housing association property, so even if we stopped supporting him – even if Scope stopped existing – Barry would still have a home. He would just need to find another care provider.

He’s got security because he’s got a roof over his head, which he wouldn’t have if he were in registered care.

Barry: It [Grangewood] was a big place. Too big. This is smaller. Day-to-day activities.

Barry: Going to the Courtyard.

Judy: You like to go to the Courtyard [a theatre / café nearby], which is really handy for where you live. What do you do on a Saturday, when they’re playing at home?

Barry: Football.

Judy: Hereford United football ground is literally just across the road. Barry likes to go and watch the football, even though they’re not doing very well.

Barry: Yes.

Judy: You’ve got a t-shirt and a scarf – you’re a proper Hereford United supporter. You go to every home game.

Barry: [Unless] I’m on holiday.

Judy: Yes, you missed one because you were on holiday.

Barry: [My holiday was to] Southampton.

Judy: You use Revitalise holiday company. They provide supported holidays, so Barry doesn’t have to take staff with him; he gets supported there. So it’s a true holiday then – he gets to have a break from us and his housemates.

It’s really a holiday if you’re away from everybody. What else do you like to do? You love music. You go to a music workshop. Where did you go this morning?

Barry: Yam Jams [a music/rapping group for disabled people].

Judy: Barry goes to two music groups every week. You go to Yam Jams on a Tuesday and a music workshop on a Wednesday. You do get involved in lots of different things – you do different things with Echo [an organisation which runs activities for disabled people].

You’ve been swimming recently with the learning disability team – the learning disability team [at Hereford Council] have a physio and on a Thursday they organise activities to help with posture. You do trampolining as well with them, don’t you? Rebound therapy, they call it.

Barry: Yes.

Judy: It’s whatever takes your fancy really, isn’t it? Barry’s not really one for set routines, so it is whatever just takes your fancy at the time. You go and see shows at the Courtyard if there’s something on you like. Sometimes it’s just going out for coffee. There’s a lot of flexibility.

Barry

Flexibility

Judy: If there’s something you want to see at the Courtyard, you just ring me up or get the staff to ring me up and say, “I want to go and see this on this day”. When I’m writing the rota I can move the one-to-one staffing around to accommodate that.

So it’s Barry who’s in charge – Barry says when he wants the time, which is something he wouldn’t have had when it was residential care.

Changing attitudes

Judy: I think people are more aware and more accepting – they see you every day, don’t they Baz? And I think that’s definitely got to help the general public’s awareness. Seeing individuals rather than seeing people en masse on their weekly trip into town – a convoy of wheelchairs going down the street.

Whereas Barry can go into town whenever he wants to. It’s just him and his support worker and there’s no fuss.

I think it’s a lack of understanding. Sometimes people just don’t know how to cope – they see somebody in a wheelchair and they don’t know how to talk to that person.

I’ve said this often – just because Barry’s got a set of wheels doesn’t mean his ears don’t work, but people suddenly talk louder and slower. That’s better when people get to know you, but you still see it sometimes.

It’s frustrating if I’m out with Barry and someone talks to me rather than asking Barry. “What does he want to drink?” I don’t know, ask him!

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