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.

What does the Autumn Financial Statement mean for disabled people?

Wednesday was International Day of People with Disabilities. By coincidence, it was also the day of the Autumn Financial Statement. Although the Chancellor’s speech and the accompanying documents only addressed disability explicitly a handful of times, nonetheless his policies will affect disabled people.

Prior to yesterday’s announcements Scope called on the Chancellor to:

  • Link and match investment in the NHS to investment in social care.
  • Invest in Access to Work and specialist employment support to enable more disabled people to enter and sustain employment.
  • Protect the value of extra cost payments.

So how did the statement match up to what we asked for?

1. Linking health and social care

The biggest announcement, trailed heavily before the speech, was a further £2bn investment in the NHS.

But it should be clear that without greater investment in this country’s social care this will remain a false economy. Social care, for both older and disabled people is in crisis. Unfortunately, as Scope’s Chief Executive and Chair of the Care and Support Alliance, Richard Hawkes, stated – ‘care was conspicuous by its absence in the Autumn Statement.’

A little less concrete than a budget promise, but still welcome, was the commitment to continue to integrate health and social care locally. Tucked away in the statement was the promise to give councils and CCGs more information about funding they will receive in future years so they can plan together. A slightly technical point yes, and not enough to counterbalance years of underfunding, but this has the potential to drive a stronger focus on supporting working-age disabled people to live as independently as possible.

Other good news was the announcements made concerning carers. These are:

  • The Carer’s Allowance earnings limit will increase in April 2015 from £102 to £110 per week
  • The Government will extend the £2,000 annual National Insurance contributions Employment Allowance to those households that employ care and support workers.
  • Care workers will be exempted from the impacts of removing the £8,500 threshold below which employees do not pay Income Tax on benefits in kind.

2. Employment support

Unfortunately no announcement regarding Access to Work was made yesterday, nor any significant changes to the way in which employment services for disabled people operate.

However, the decision that an additional £3m will be made available to expand existing mental health and employment pilots is a really positive step. It is now important that the learning from these pilots are effectively captured and applied to employment services as a whole.

3. Extra costs

Osborne announced that Disability Living Allowance (DLA) and Personal Independent Payments (PIP) would be protected in any future freeze of working age benefits. Whilst we recognise that the freeze will adversely affect many disabled people in the ESA WRAG group and on JSA, protecting DLA/PIP is an important part of ensuring disabled people can meet the extra costs they face.

Scope warmly welcomed this move at the time, and we were pleased when in this was confirmed in a separate announcement made by the Minister for Pensions Steve Web.