Campaigners are calling on the government to scrap a policy that prevents disabled people with complex healthcare needs receiving the benefits they need to stay mobile if they are living in residential homes.
Little-known regulations apparently state that recipients of NHS Continuing Healthcare (NHS CHC) are not eligible to receive the mobility component of personal independence payment (PIP) if they are receiving residential care.
But those who receive NHS CHC and continue to live at home are potentially eligible for both the PIP mobility component and the daily living part of the benefit. Those in residential care who receive council-funded care are potentially eligible for just the mobility part of PIP*.
The controversy emerged this week after friends of children’s author Andrew Knowlman, from Hertfordshire, launched a petition calling on the government to reverse “discriminatory” rules which meant he had been told he would have to return his Motability van.
Knowlman (pictured), who has motor neurone disease, has been living in residential care since August 2016, but has only recently been told that he had in fact not been eligible for PIP mobility since he began receiving NHS CHC and moved into the home in Hemel Hempstead.
He was told that he would therefore have to return the minivan he has been leasing through the Motability scheme.
He told the i newspaper: “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.”
Knowlman was only told this week, after his case was raised by i, that he would be allowed to keep his Motability vehicle.
A petition calling for the government to change the regulations had been signed by more than 35,000 people by last night (Wednesday).
Knowlman told Disability News Service that there was “no logic” to the rules.
He said: “The Department for Work and Pensions (DWP) say that I am not entitled to mobility component of PIP because I live in a care home and have NHS continuing healthcare funding.
“Motability have now said that I can keep the van until further notice. This is a gesture by Motability, and I therefore continue to speak with the minister about changing the rules regarding PIP entitlement.”
Disabled campaigner Fleur Perry, who has previously raised serious concerns about policies surrounding NHS CHC, said: “I’ve never seen a continuing healthcare policy which specifies that the mobility component of PIP should be taken away, and it’s not something I’m aware of within the rules around PIP.
“If this is current policy, then there are discussions to be had around equality and around personal liberty.
“As someone who lives independently with care funded by continuing healthcare and who uses a Motability vehicle to get, well, everywhere, this is very worrying.”
A Motability spokeswoman said: “As you will appreciate, we do not always know the details of a customer’s circumstances etc, but we will support their mobility if we know that they are in hospital.
“We are working closely with DWP to ensure that we have the relevant information in all cases to enable us to do so.
“As soon as we were made aware of Mr Knowlman’s specific case details, we contacted his family to assure them that, in line with our hospitalisation policy, he can keep his vehicle for as long as he is in hospital or receiving similar continuing healthcare provided by the NHS which causes his mobility allowance to be suspended or stopped by the DWP.”
She said that DWP usually stops paying PIP mobility to the Motability scheme if a customer has been in this situation for more than 28 days.
But she said: “Depending on the expected length of stay and the customer’s preferences, we will discuss the options that are available, and in most cases, we will be able to leave the car with the customer during their stay or until the end of the lease agreement.”
A DWP spokeswoman said: “Local authorities aren’t funded to meet mobility needs in a care home, and residents may be asked to provide a financial contribution.
“However, this is not the case for NHS Continuing Healthcare, where the assessment itself assesses mobility needs and residents do not have to make any financial contribution towards their stay.”
She added: “People receiving NHS Continuing Healthcare in their own homes can continue to be paid PIP, because their additional costs may be wider than those paid for in a care home and won’t be met by the NHS, eg additional heating.
“Under these circumstances claimants can therefore maintain eligibility for this support. The same policy applies to disability living allowance.
“Motability’s policy is to look at the individual circumstances of each case to assess whether they should recover the vehicle immediately or whether there are special circumstances which would allow for the vehicle to be retained if that is the best solution for the claimant and/or their family.
“Andrew Knowlman has been informed by Motability that he is able to keep his vehicle.”
*This article originally stated that those receiving NHS CHC who continue to live at home are not able to claim the daily living part of PIP. That was incorrect. They are potentially eligible for both mobility and daily living elements of PIP.
