Tag Archives: support worker

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.

My mum was like, ‘Wow! It’s a new Elliot!’

I’ve been working with some of the people Scope supports to live independently in the community, whatever their support needs. I wanted to share a few of their stories.

When I met 24-year-old Elliot at his home in Hereford, a bungalow he shares with two friends around his age, he was in a bit of a hurry. He had an interview that morning to volunteer at a local hospice.

Elliot outside his house in Hereford
Elliot outside his house in Hereford

“I work at a charity shop in Hereford. I want to get more jobs or voluntary work, just to keep ticking over,” he told me.

“I’m hoping to do a National Diploma at the shop, and then when I’ve done voluntary work for a while I’ll hopefully move up slowly.”

Leaving home

Elliot has cerebral palsy and autism. He’s a full-time wheelchair user, and has lived in a shared house for the past six years, working with Scope support workers.

His parents helped him find the place he’s in now when he was 18, and he says he hasn’t looked back since. He started out with a few dinners and overnight stays, and soon decided to make the move full-time.

“A few weeks after I moved in, my mum came to visit and she was like, ‘Wow! It’s a new Elliot!’”

Choice and control

Scope delivers Elliot’s care – which he pays for with his personal social care budget – and that of his housemates, but Elliot is a tenant in the house. This gives him choice and control over the way he lives. He could move out if he wanted to, or change his support provider.

Elliot in his bedroom
Elliot in his room, which he’s decorated with lots of furniture in his favourite colour, red

There’s a support worker in the house 24 hours a day. The three housemates pay for this together. Elliot also has a one-to-one support worker during the day.

“Obviously we have our ups and downs, like everyone, but I love the guys here. Scope is very special to me, because they help me achieve what I want to do.

“I go everywhere with a support worker, but we’re trying to get me green on the traffic lights system [a road safety programme] so I can go out on my own – into town, into work.”

‘The best experience’

Elliot’s interest in charity fundraising led him to do a 14,000-foot tandem skydive to raise money for his local air ambulance. He single-handedly raised more than £1,100.

Elliot with his skydiving instructor, Jason
Elliot and Jason, his skydiving partner

“It was the best experience of my life. I was harnessed to Jason – I couldn’t have done it without him. It’s not easy to find somewhere that caters for people with disabilities – I had to ring round all over the country.

When they put me in the harness, I was like ‘Here we go…’, but once we jumped I didn’t even feel nervous when I looked down. It was absolutely amazing. The whole family came to watch.”

I met people with a range of impairments. Elliot mostly needs support with staying safe in the outside world, but others have more complex needs. I’ll share some of those stories next week.

Find out more about Scope’s community support services.