Tag Archives: supported living

It took me 30 years to make myself heard – World Voice Day

For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard. 

I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.

I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.

Mandy at home, with photos of friends and family on the wall behind her
Mandy at home, with photos of friends and family on the wall behind her

Decisions made for me

I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.

Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.

I used to get very angry and frustrated, because no one ever asked me what I wanted.

The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.

It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.

Finally getting a voice

In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.

A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.

This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.

I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.

I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.

Mandy in her garden in Hereford
Mandy in her garden in Hereford

My own home

I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.

I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.

My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.

I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.

At this stage of my life, I feel more confident, decisive and stronger than I ever have before.

There’s no sign outside: it’s just my home – #100days100stories

Guest post from Tony, who lived at Scope’s Lingfield Avenue care home in Surbiton until it closed in November 2014. He now lives in supported housing nearby. Tony’s story is part of our 100 days, 100 stories campaign.

It’s important to me to be independent. I’ve had a couple of jobs – one in an off-license serving customers, one in a stables working with horses, one in a music shop.

At the moment I’m working in a garden centre in the grounds of Springfield Hospital in Tooting. In an ideal world I’d like to work with children with special needs or learning disabilities. I had a voluntary job in a school for students with special needs for five years.

Living in a care home

I’m 47 now, and I lived at Lingfield Avenue (pictured above) for close on 20 years. Some parts of it were good and some parts of it were bad. When I first went there, there was no lift at all, so wheelchair occupants couldn’t get up to the second floor. Some people would have to overreach for the sink because it wasn’t at their height. All the bathrooms were shared.

I didn’t feel I had the support to live as independently as my disability would allow. It was just the way it was run, I suppose – I felt it did not allow residents to realise their potential.

Moving out

When the word got out that Lingfield Avenue might be closing, and I was made aware of it, it was a shock. In a way it was a bad thing, but in a way it was a good thing. For me it was good, because I’d always wanted to move somewhere that was less care-orientated.

One of my social workers said to me that I could try my own flat, but I wasn’t ready for that, and I’m still not now. So they found me the place I live now, which is supported housing.

Tony using his laptop in his room

I share with a few other residents, and compared to Lingfield Avenue it’s brilliant. You can use whatever independence you’ve got, and the staff really encourage you to do so.

Being more independent 

You can do your own cooking – anything you want to do really. I keep asking one member of staff if I can make my own breakfast, and he says, “you know you can, you don’t have to ask me!”

They say to me, “If you need help, just shout out and we’ll be there.” So far I haven’t had to ask for it much, but that doesn’t mean I can’t ask.

Exercise book with handwritten notes about gardening
Tony keeps detailed notes of his work at the garden centre

I had to get used to a new area, new bus routes. As yet I haven’t gone from here to Tooting by bus, but I’m itching to try it. One of the other things I like about living here is that they haven’t got a sign outside saying what the organisation is. It’s more homely, because there’s no label – it’s just a person’s home, rather than ‘residential accommodation’.

Looking ahead

In the future I’d like to find some form of paid employment again, because I don’t only want to help myself, I want to help the general public.

I’m happier now I’m established here, and I’m far more independent. One day, when I’m ready for it, I quite like the sound of moving into my own flat.

Read the rest of the stories from our 100 days, 100 stories campaign.

What makes me frustrated? People not listening to me – #100days100stories

John lives in a shared house in Hereford, with support from Scope staff. We first shared his story in December 2014, and we’re republishing it here as part of our 100 Days, 100 Stories campaign.

The night before John and I met, he hosted his 50th birthday party in a local social club. More than 100 people came, from all parts of his life – friends, people he’d met while volunteering, support workers, even his fitness instructor.John in a coffee shop near his home

John lives in a supported living house run by Scope in Hereford, and has chosen to share with two others rather than live alone. He has cerebral palsy, uses an electric wheelchair and has learning difficulties.

Becoming more independent

I met him, along with Lottie, who manages Scope’s service in Hereford, in the café of a theatre near his home. John arrives dead on time, unsupported and under his own steam. When we’re settled, Lottie reminds him that this wasn’t always the case.

“We worked together for about two years, learning how to go independently in and out of town. We’d go into town together – I used to sit in a coffee shop in the centre of town, and you used to go off and cross the road to the newsagents and then come back when you’d bought whatever you needed to buy”.

“We did that for 12 months – you’d have different tasks to do, going into WH Smiths or the bank, and things like that.”

“[Now] I get it all by myself,” adds John.

“You do a lot of things yourself now. Whereas if you go back 10 years, you would have probably spent about an hour a day on your own, and that was only at home, never out. You’ve learnt these skills.”

John and Lottie have worked together for 20 years, and tJohn in a coffee shop near his homehey have a strong mutual understanding. Lottie encourages John in the conversation as talking is quite difficult for John, but he listens and often adds his own thoughts.

Leaving residential care

As a young man, John lived in a large care home for disabled people. It had more than 60 beds, and was out in the countryside miles from the nearest town. John had little control over his day-to-day life and most decisions were made for him, from what to eat to what time to go to bed.

“[It was] horrible. You couldn’t do nothing. There was no town to go into. You’d have to ask the staff to take us out in the van,” he says.

John lived there until his mid twenties, when he moved to a house run by Scope’s community support service. He later became a tenant in the house, which means he can change his care provider if he chooses without having to move out. He pays for his team of support workers out of his personal budget, signing the cheques himself.

“I like to choose”

He is involved in all kinds of activities – from gardening at a local college to wheelchair football, to a music club where he volunteers to collect members’ subscriptions and take the money to the bank. During our conversation, at least half a dozen people stop to say hello to him.

“[In the future I’d like to] do more, like I am now,” he says.

Towards the end of our talk, Lottie asks John what makes him frustrated. “People not listening to me,” he says. “I like to choose. My own food. Be treated normally.

“I do things by myself, but there’s someone there if I need them.”

Find out more about 100 Days, 100 Stories, 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.