Guest post by Catherine Scarlett, who spoke at a panel discussion we held in partnership with the Fabian Society at last week’s Labour Party conference.
The subject was the extra costs disabled people face, and the other panellists included Debbie Abrahams, the new shadow minister for disabled people. Catherine has a neurological condition and uses a powered wheelchair.
I first got involved with Scope’s work on extra costs nearly a year ago, when I filled in an online questionnaire about the extra things I have to pay for because I’m disabled.
I’d just shelled out an eye-watering £7,600 for a wheelchair with powered wheels – which came out of my savings, although some of the costs were later refunded by Access to Work.
I started adding up other expenses, and realised in total that year, my extra costs had been well over £10,000.
At the same time, I was about to lose my job. I had been determined to keep working after I became disabled, but my employers appeared equally determined to get rid of me.
I was reading stories in the papers about how disabled people got masses of hand-outs, and online comments accusing us of being shirkers and frauds.
So when I was asked to be on the panel about extra costs at the Labour Party Conference this week, I jumped at the chance. I feel it’s vital that real people tell their stories – they make far more impact on the public than statistics.
I managed to put back a month’s hospital admission for a day so I could get to Brighton for the event.
On the day, I described some of the challenges that I have faced since I became disabled. From trying to find information about equipment, to getting support at home and at work, it can be a bewildering and frustrating process.
I outlined some examples of my extra costs. I’ve had to pay more than £3,000 for a folding wheelchair frame that fits into my car, plus £500 to replace broken parts.
Using a wheelchair damages your clothes, so I have to replace them often – two coats and 20 pairs of gloves last year alone. I’ve had to pay for a stair lift at home. I need a cleaner to do the jobs I can’t manage, at £30 a week, and my gas and electricity costs are far higher.
I’ve also needed to travel to London from Yorkshire eight times this year for hospital visits, costs I have to cover myself.
Even the hotel room I stayed at after the panel discussion was more expensive – I had to pay an extra £70 for a room which was accessible for me.
Extra costs payments
I have received Disability Living Allowance (DLA), and later Personal Independence Payments (PIP), since shortly after I became disabled, and they have been vital for my independence and quality of life.
Getting a wheelchair 18 months ago gave me my life back. Without DLA, and now PIP, I wouldn’t have been able to finance it.
I wouldn’t be able to travel to London for treatment, which would mean I lose my chance of improving my physical condition.
And I wouldn’t be able to pay the everyday extra expenses without financial hardship. Losing my job has been a major challenge to my financial resilience.
The social security system needs to be supportive and transparent, and it needs to ensure that disabled people get enough financial support to cover their actual extra costs. Currently there’s a big shortfall.
The event was brilliant for me, as it gave me the chance to share my story with a lot of influential people. I found that many members of the audience also had similar stories. I strongly believe that discussion with disabled people is vital in policy-making, and I’m hopeful that events like this will make a difference.