For disabled people the disability living allowance (DLA) could be described as the glue that holds lives together. The higher-rate mobility component, in particular, has provided me with secure support with my mobility needs since I first claimed, on the advice of my GP, in 1995. But this secure support could all come to an end under personal independence payment (PIP), which replaces DLA from April 2013.
After all consultation stages on the new benefit have finished, the government has decided at the last minute to restrict eligibility to the enhanced mobility component of PIP by excluding those who can walk more than just 20 metres. In common with many wheelchair users I can still walk in my own home, and I intend to continue to do so for as long as possible.
While the government says claimants should only be judged able to walk more than 20 metres if they can do so “reliably, repeatedly, safely and in a timely manner”, they have not given this qualification legal force by including it in the regulations. Without this, and with Atos and Capita responsible for PIP assessments, I fear we will face a repeat of the suffering, hardship and clogged appeals process associated with the notorious work capability assessment.
Disabled people use their higher-rate mobility component in a variety of ways, such as paying for taxis or meeting the cost of a wheelchair, scooter or private car, but a key advantage of the benefit is the option to turn it into a suitably adapted car leased through the Motability scheme. As my condition has deteriorated, so the type of Motability vehicle I need has changed. From the mid-1990’s, I needed an automatic car with hand controls and a wheelchair hoist, which from 2004 needed to accommodate a powered wheelchair.
By 2011, my reduced stamina meant a car with a boot hoist no longer gave me independence. I applied for a grant from the specialised vehicles fund, administered by Motability on behalf of the government, towards a converted vehicle into which I could drive my wheelchair, transfer to the driver’s seat and travel independently. Without this amazing vehicle, I would be unable to get around independently except to places within “easy wheeling” distance.
Thus for some 17 years a succession of adapted Motability cars has enabled me to take on the variety of roles and responsibilities that accompany successive phases of family and working life. When I was struggling in the mid-1990s to parent my young boys while coming to terms with a progressive, painful and debilitating condition, my adapted car enabled me to take them to playgroup, nursery, school, out-of-school activities, medical appointments and play-dates. As they grew up, I took the opportunity to take on more demanding work, starting with a job at a disability charity, and my car enabled me to travel all over England.
Later on, when I worked as disability equality and access officer at my local council, my car enabled me to get to my workplace at the Guildhall, to meetings off site and to all kinds of organisations, buildings and services, to advise on both practical and management changes to improve accessibility, equality and inclusion.
In 2009, my condition deteriorated and I had to take early retirement, but that didn’t mean I no longer needed my car. While no longer well enough to get to work each day, I try to make a contribution in other ways, such as campaigning against national and local cuts and changes and volunteering with local disability charities.
As happens in many families, my elderly mother has needed more support as my children have become less dependent. Without my adapted vehicle I would no more be able to support my mother than I was able to parent my children when they were young.
My story is not exceptional and nor should it be. We all want to play our part in society, whether through working, caring for our families or doing voluntary work, but disabled people need a bit of extra help to play theirs. PIP is a dangerous experiment, removing the glue that holds our lives together and affecting our families and communities as well as ourselves. It needs to be implemented responsibly.
• The Emergency Stop report is published by the We Are Spartacus campaign group
This article was found on The Guardian website on 15 January.