As part of our regular ‘London Lives’ series, we report on the real-life story of Sam*. This case study came to us from one of our grant recipients, Bromley X by X, a user-led organisation for deaf and disabled people in Bromley.
Sam is a disabled man with cerebral palsy. He uses a wheelchair and needs support to read, write and process complex information. Sam lives alone and has a Direct Payment from the Council to employ Personal Assistants to support him with personal care and meal preparation.
Sam has a part-time job for two days a week. He has learned the route to and from work and can now travel independently. He has support while at work through Access to Work.
Sam’s Personal Assistants have precise job descriptions and are employed for the minimum amount of time it takes to support with washing and dressing and basic domestic tasks. This means that he does not have support to read his mail or with his personal affairs.
Due to be re-assessed for PIP
Sam is due to be re-assessed for Personal Independence Payments (PIP) under the transfer from Disability Living Allowance (DLA) but does not know when the letter will arrive calling him for assessment or how he is going to complete the complicated application form. The local Citizens’ Advice Bureau (CAB) has closed, and travelling to another CAB and answering the questions to complete the form without support will be difficult.
Unable to read the letters they send him
Sam is currently in arrears as a result of changes to the hourly rate his Local Authority (LA) pay for Personal Assistance (PA). He found out retrospectively that the hourly rate had been decreased, having continued to receive PA support through a local care agency whose rate remained the same. This left him in debt by around £1000. He does not know if the LA wrote to him in advance to tell him of the change because he cannot read the letters they send him.
“They do not turn up on time”
Sam is having difficulty managing his Personal Assistants. They do not turn up on time and one of them sometimes doesn’t come in the evenings, instead leaving a ready meal in the microwave for him to reheat for his evening meal. He has given them information about free training they could attend on the role of the PA but they have refused to attend.
The infrastructure to support individual disabled people to manage their Personal Budgets has been reduced leaving no support with ongoing management of PAs. His care manager refers him back to the Personal Budget Support Agency who tell him it is not in their service specification to provide the support he needs.
Sam may need to give up his job in order to survive financially
Sam currently gets Working Tax Credits (WTC) to top up his wages. Under proposed changes to WTC, the introduction of Universal Credit and the removal of the Severe Disability Premium he will be considerably worse off and may need to give up paid employment altogether to survive financially.
This will have further consequences as the support he relies on to, for example, contact care agencies for emergency cover when his PAs are off sick, comes through his in-work support in a voluntary capacity on top of their working hours, and by leaving employment he would lose what has become an essential support network for emergency situations.
* name has been changed
Lessons
- Welfare reform can have the perverse effect of reducing a person’s opportunity to work and live an active and inclusive life whilst increasing dependency and social isolation.
Links
- Inclusion London supports deaf and disabled people’s organisations in London and campaigns for equality
for deaf and disabled people - Bromley X by X (eXperts by eXperience) is a user-led organisation for deaf and disabled people and carers in Bromley, South London
In 2016, Bromley X by X received a grant of £4,000 from London Catalyst to develop online resources to equip local deaf and disabled people with accessible information.
If you would like to apply for a grant from London Catalyst, you can find all the information you need over on our ‘Grants’ page.