Understanding the “Living” in the Disability Living Allowance

DH’s co-editor Martyn Sibley writes about the impact that the proposed changes to the Disability Living Allowance will have on the ability of disabled people to access travel and leisure, and reports on recent findings by the Papworth Trust.

Rob Nixon is a 50 year old guy with a great zest for life. Recently we were put in touch by a contact I had made on Twitter, Helen Sampson of the Papworth Trust. They are running a campaign around the potential changes to the Disability Living Allowance (DLA).  Their research is to understand how disabled people think this will personally affect them and feed this into the governments’ consultation process. Rob volunteers for the trust, is disabled himself and wanted to share his story with horizons.

By way of background, the DLA is a non-means tested welfare payment available to all people with disabilities in the UK to help cope with the extra costs incurred as a result of a disability.

Despite Rob having Multiple Sclerosis and the detrimental effects this has on his body, he lives a busy, passion fuelled and fulfilling life. Rob is unable to walk, has very limited power in his arms and has limitations with hearing and memory. Due to the additional costs resulting from his disability, Rob receives around £300 per month through his DLA.

Rob tells me:

“Despite my disability, I need a purpose in life. That is the reason why I volunteer regularly for the Papworth Trust. I want to use my skills and knowledge in life and from having a disability to show the difficulties this throws up and to campaign for life to be easier for all. I am on the finance committee, have done lots of media interviews and I give input to their Personalisation steering group.”

For Rob the additional costs he incurs from being disabled are mainly from transport. With everyday modes of transport an impossibility, he relies on a car. He is unable to drive, but his partner can. The DLA has contributed to the cars’ costs through the Motability scheme. Also, without an income, he has to find the means to buy the fuel for his car, the rising costs of heating bills (which he utilises more because of his condition) and all of the other factors non-disabled people are struggling with in the current economic climate. Rob explained further:

“My partner pushes me in my wheelchair and we enjoy going for a drink, dining out together, a trip to the shops and occasionally a deserved holiday in Cyprus. Without my DLA, the work I do for the trust and my social outlets would all fall down. I would feel ostracised, become agoraphobic and I would not be able to keep my brain stimulated. Whilst it isn’t always easy, I think you have to make the most of life. The DLA enables that life to be a better one.”

Personally I liked how Rob has an aim for independence and inclusion. When discussing a visit to London and the additional requirements when booking for a wheelchair user, he said

“the answer is to have inclusive customer service with additional tick boxes around disability. Once people understand disability and everyday services are fully inclusive, reliance on the government for support would be slightly reduced. Until then the DLA is a vital part of my life. Without this support I would hate to consider the consequences”.

Let us know your thoughts on Rob’s story, your feelings around the DLA changes and get involved by supporting the Papworth Trust and their work by clicking here.

By Martyn Sibley

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