Andrew Knowlman: DWP taking away only means of transport for author immobile with MND A wheelchair-bound children’s author with Motor Neurone Disease, who is utterly immobile and fed through a peg into his stomach, […]

A wheelchair-bound children’s author with Motor Neurone Disease, who is utterly immobile and fed through a peg into his stomach, is having the only means of transport he can use to leave his care home taken away from him by the Department of Work and Pensions (DWP).

Andrew Knowlman, a 50-year-old former businessman who took up writing after he fell ill with MND three years ago, needs a specially adapted minivan to use whenever he wants to leave his residential home in Hemel Hempstead, so he can spend time with family and friends.

“Although I have a terminal illness, in no way do I see my life as being over. I am a dad to my children, and I need the Motability vehicle to enable me to be just that.” The i newsletter cut through the noise Email address is invalid Email address is invalid Thank you for subscribing! Sorry, there was a problem with your subscription. Andrew Knowlman

However, the national charity which helps disabled people, Motability, has written to Mr Knowlman saying that they have not been receiving the mobility part of his Personal Independence Payment (PIP) benefit since August 2016. As it was being used to pay the monthly cost of leasing the vehicle, officials want to take the van back.

“I had the daily living component of PIP removed in August 2016, but the DWP said nothing about the mobility part,” Mr Knowlman told i. “In addition, I received a letter from the DWP in January saying that our existing PIP will be reviewed in April, suggesting that we receive something [but that has not been the case].”

Although disabled people living in care homes are entitled to the mobility benefit, Mr Knowlman has his care paid for under NHS Continuing Healthcare (NHSCH), given to people who have significant ongoing healthcare needs, meaning his benefit is being stopped.

Mr Knowlman said if he was living at home, with full time nursing care, his costs to NHSCH would be about three times greater – yet he would still have been entitled to the mobility benefit. Motability staff were due to take Mr Knowlman’s minivan away last week, but have given him until 9 March to convince the DWP to close what friends call “an absurd loophole” in the PIP system.

Distressing

Mr Knowlman, who can only communicate using an “eye gaze” computer, said: “The Motability vehicle is the only way I can attend events at my children’s school, be away from the care home and be in nature.

“It is the only way to watch my children ride their bikes, play golf and music, watch Watford FC and travel easily to hospital appointments. Although I have a terminal illness, in no way do I see my life as being over. I am a dad to my children and I need the Motability vehicle to enable me to be just that. This is a very distressing situation.”

More than 17,000 people have signed a Change.org petition calling on Sarah Newton, the minister for disabled people, to reverse the decision so Mr Knowlman can continue to receive the benefit which pays for his vehicle. The writer and satirist Armando Iannucci is among those supporting him calling the decision to remove his friend and neighbour’s minivan “insane”.

Despite his physical problems, Mr Knowlman is as mentally alert as anyone could hope to be and enjoys spending as much time as possible with his wife, Jane, and their children, Valentina and Sebastian. But even the chance to just watch his family outdoors may soon be taken away from him.

Sunny day out for MND sufferer @andrew_knowlman made possible because of his van. @EstherMcVey1 @SNewtonUK don't take it away in 3 weeks, close the loophole now! https://t.co/eYkJmXGJgP Thousands agree with #vanman RT if you do. pic.twitter.com/INgdYJqo1H — Sarah Boyce (@Boycecartoons) February 17, 2018

Discriminatory

William Allen, a friend whose children go to the same school as Mr Knowlman’s and who set up the petition, said: “A specially adapted minivan enables Andrew to maintain active parenting by visiting his kids’ school and take trips to local places where he can feel the wind on his face, see the sun in the trees and smell the blossom in the air. In the final stages of his life, for Andrew this is the best it gets to feeling alive.

“As well as being heartless, in view of the recent court ruling on the inequalities in the application of PIP, this is a highly questionable position to take and needs to be urgently reconsidered.”

The High Court ruled in December that the PIP system was “blatantly discriminatory” against people with mental health problems leading the DWP to announce a review of the 1.6 million people in receipt of PIP. Around 220,000 people are expected to receive more money.

This is insane. A neighbour and friend in advanced stages of Motor Neuron Disease will have his mobility vehicle taken away because of Dept Work and Pensions regulations. Please read and sign petition. Takes 5 secs. https://t.co/mBScnaKBmf — Armando Iannucci (@Aiannucci) February 15, 2018

Disability organisations have long viewed the introduction of PIP, which replaced the Disability Living Allowance in 2013, as a thinly veiled exercise in cost cutting.

Mr Allen said: “The difference getting out of the home makes to Andrew’s quality of life is incredible. Just yesterday he was able to watch his son playing in the puddles. He can get out into the community, people he knows come up to him and say hello.

“Most people who have MND are on anti-depressants because of their situation but Andrew isn’t. Getting around with the van is crucial for his mental health. No one has done anything wrong, but this is just an absurd loophole that needs to close.”

Ms Newton told i: “We are committed to supporting those with disabilities and long term health conditions, and are spending more than ever before on disability benefits. When someone is in NHS Continuing Healthcare all of their care needs are funded through that, including their mobility needs.

“I have asked Department of Health colleagues to look into his case.”