Disability Labour – The National Committee of Disabled Members

By Anne Pridmore, Disability Labour Executive Committee Member

Disability Living Allowance started in 1992 it consists of two components the mobility allowance and the daily living part. The mobility component is £62.55 and the daily living part is £89.60 at the higher rate. In 2013 DLA was changed to Personal Independence Payment commonly known as PIP.

In 2019 SCOPE the National Charity did a report on the extra cost of being a disabled person. The findings of this report calculated this to be £583 per month. I am only using this report to try to illustrate that PIP was never meant to pay for care. It is also important to say PIP has never kept up with inflation.

In 2014 the Independent Living Fund closed and for the first two years central government awarded Local Authorities extra monies to use for the extra burden they had placed on them for social care. However the money was never ring fenced thus allowing Local Authorities to plug holes in their budgets due to yearly cuts.

Since the demise of the Independent Living Fund (ILF) and cuts to Local Authorities some English councils are quietly increasing charges which in effect they are clawing back from welfare payments and leaving some working-age adults with little more than £3 a day to spend.

People facing these charges fear they will be unable to heat their homes and feed themselves. One single man living with bipolar disorder said he may have to put his dog down because he will be unable to afford to look after it.

The High Court has ruled that Norfolk County Council breached the rights of a woman – known as SH – by discriminating against her when it changed its care charging policy.

Like many other councils, Norfolk has been making up for cuts in government funding by reducing the minimum income guarantee (MIG) that SH and others must be left to live on after any charges – and by taking into account the daily living part of their personal independence payment, when deciding how much to charge them for their care and support. Let me remind you once again that this non means tested benefit was never meant to pay for care but help towards the extra costs incurred by being disabled.

But the council’s new policy meant that SH and other disabled people in her situation with high support needs had a higher proportion of their income taken by the council than disabled people receiving lower benefits and those who were able to do paid work.

The court heard that SH, who relies on benefits for her income and has Down’s syndrome and physical impairments and health conditions, has never been able to earn money and there was “no prospect of her doing so in the foreseeable future”.

The new council policy meant that the charges she would have had to pay the council from her benefits – for day services, respite care and a personal assistant – would have risen from £16.88 per week to £50.53 per week.

This argument rested on two points. The young woman could not work and was therefore entirely reliant on benefits, unlike someone with lower support needs who might be able to work and whose earned income (according to the Regulations) cannot be taken into account when assessing how much they should be charged. In addition, her assessable income was higher because she qualified for the enhanced rate of PIP daily living allowance. 

The Council argued that the charging policy was not discriminatory as it applied to everyone.  The judge said that it was because the impact was different for people who were severely disabled. “The way the Charging Policy is constructed means that, because her needs as a severely disabled person are higher than the needs of a less severely disabled person, the assessable proportion of her income is higher than theirs”.

Whilst SH won the case the charges already paid are not being refunded.

Inclusion London said the ruling showed that the current system and the changes made by local authorities had had “a disproportionately negative impact on disabled people with the highest support needs”.

An Inclusion London spokesperson said: “This group of disabled people find it extremely difficult to get a job and maximise their income”.

“Moreover, they usually need social care support to meet very basic needs.

“They are also the least likely and able to challenge local authority charging decisions. Consequently, they are often pushed into deeper poverty.”

Inclusion London warned that DPOs across the country were reporting that their local authorities were implementing similar policies.

The Independent Living Strategy Group recently carried out a study of local authority charges for social care, exploring in particular whether and to what extent the practice of charging is undermining people’s wellbeing, the primary purpose of social care services as set out in the Care Act 2014. They examined some key features of the way local authorities implement charges and gathered evidence on the impact of charges on disabled people.

Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies.

The study found that 4 in 10 of those responding to a survey had experienced a substantial increase in charges over the last couple of years. Nearly half (43%) had had to cut back on their spending on food to pay for care and 2/5 of respondents (40%) said they had had to cut back on heating costs to pay for care and support.

The study concludes that charging for the support disabled people need to go about their daily lives is “unfair, counterproductive and undermines the primary purpose of the care and support system”.

The effect of charging, it says, is often to “drive disabled people into care poverty, and to create confusion, stress and complexity in an already overly burdened bureaucratic system” through what is effectively “an unhelpful and unnecessary tax on disability and old age”.

In Control’s helpline which offers information and advice to individuals, family members and organisation’s has seen a record number of enquiries relating to charging policies.

The stark facts of the funding crisis facing social care are that some councils “could run out of cash”  and it would require £2.1bn to keep provision at the current levels (allowing for increase in demand) by 2023/4 and £10bn to restore provision to what was available in 2010/11.  

Hammersmith and Fulham are the only Local Authority that do not charge.

To close let me remind you once again Personal Independence Payment is not means tested and consists of two parts – the mobility part and the daily living part.  From a personal perspective my mobility part all goes to Motability to pay for my car and the daily living part is no longer enough to pay my charges which now have to be subsidised from my Pension Tax Credit.

Anne Pridmore
Executive Committee Member

The inquest into the death of Philippa Day concluded last week, and the verdict was announced on January 17th 2021. Philippa was a young mother who had type one diabetes. At the time of her her death she was experiencing mental health distress, including agoraphobia. Philippa had previous psychiatric admissions. Her Community Psychiatric Nurse had tried on numerous occasions to tell the DWP and Capita how unwell Philippa was and that she couldn’t leave her house to attend a face-to-face appointment at an assessment centre. But that advice was disregarded. 

Philippa was being moved from Disability Living Allowance to Personal Independence Payment. Her move should have been automatic, as her DLA award was an indefinite one. But the DWP lost one of the forms that Philippa returned and then blamed her for its loss. 

Philippa, who was only 27, was found unconscious with the letter from Capita beside her demanding she attend her interview. She died in hospital after two months in a coma. 

In his verdict, the Nottingham Assistant Coroner, Gordon Clow, listed 28 ‘problems’ with the administration of PIP which contributed to Philippa’s death. The inquest uncovered multiple failings by both the DWP and its contractor Capita. 

One particular document, an IPR, Internal Process Review, which was released to investigative journalist John Pring of DNS, Disability News Service, was crucial in forming the conclusions drawn by the Coroner. The DWP had fought against its release. When DNS reported its contents, the reasons for the DWP wanting to cover-up its errors was clear. The IPR showed that the DWP were aware of at least six serious mistakes made by their own staff and a further three by Capita staff. 

Philippa’s file did not have a marker showing that she needed extra support. The information given by her CPN was not recorded. DWP staff made two catastrophic errors.

The first was the failure of a DWP Decision Maker to consider all the available evidence the DWP had when they closed Philippa’s claim for PIP. The staff member who took Philippa’s last call to the DWP made the second serious error. During the call Philippa explains she’s starving, she has debts, because her DLA was not transferred to PIP and she has lost other premiums as a consequence. She says that she cannot survive without money. She was receiving just £61 per week to live on. 

I have listened to the recording of the call. Philippa was clearly distressed and crying. Her words still haunt me. But the DWP employee didn’t give Philippa any help. She had no concern for her welfare and obvious desperation. 

This case and that of Errol Graham, who starved to death in 2018 because he too had his benefits stopped, are clear evidence the DWP has blood on its hands. 

In October 2020, the Secretary of State for Work and Pensions, Therese Coffey, told a committee of MPs that the DWP had; ‘no duty of care or statutory safeguarding responsibilities towards vulnerable claimants’. If her statement is actually correct, it is scandalous that DWP legislation is so recklessly drafted. 

Surely these two deaths and countless others are the consequence not only of gross neglect, but criminal negligence?

In January 2019 the DWP revealed that over 21,000 claimants had died over a five-year period that ended in April 2018, whilst waiting for their PIP claim to be assessed. There is no reason to suppose that those deaths have lessened. So from April 2018 till now, January 2021, there will have been another 11,550 deaths, making the almost eight-year total to be over 32,000.

How can it be that the lives of disabled people matter so little? Clearly this doesn’t trouble the conscience of the current government. 

If these were deaths in industry, or on the railways, the Crown Prosecution Service would consider charges of corporate manslaughter. Why is the DWP still free to operate its practices of systemic disbelief without challenge? 

Why are the officials that failed to recognise the distress of claimants not being the subject of disciplinary action? Why has there been no overhaul of how claims are assessed? 

If the government asked disabled people to design a better, more humane system, we could easily do so. There is currently a [commission] of disabled people who are experts by experience doing just that. 

This rotten system needs a drastic overhaul. It’s demeaning and causes immense, preventable distress to disabled people at every stage of the application process. Forms don’t ask the right questions, medical evidence either ignored or not taken into account. Reports by assessors are frequently full of inaccuracies and often downright lies. 

The deaths of Philippa Day and Errol Graham must mark a watershed in the way disabled people are treated by the DWP.  On-going contracts with Capita, Atos and Maximus must end. The majority of claims should be decided on the paperwork supplied by claimants. There should be regular quality checks on how staff handle claims.

There needs to be a total re-write of staff guidance beginning with the premise that disabled people rarely lie about their impairments.Safeguarding and a duty of care must be part of every interaction with claimants.  

To ensure this happens, disabled people must be involved as Experts by Experience. We should train DWP staff so they not only understand our conditions, but treat us with dignity and respect. Staff should support us to claim the monies we are entitled to. 

Only when these changes are made will disabled people be safe from the harm done to us by the DWP.