Personal Independence Payment Review by Hayley Matthews
Hello, my name is Hayley and I am a Regional Manager in the North East of England for Inclusion North, an organisation that exists to make inclusion a reality for all people with a learning disability, autistic people, and their families.
My job involves working with experts by experience, voluntary sector organisations, local authorities, and the Integrated Care Board, to raise awareness, advocate for co-production, and to coordinate and deliver projects promoting inclusion, accessibility, and reducing inequalities.
I’ve been thinking a lot about the Conservative Government’s plans for disability benefits, and I’ve decided to share my reflections, as well as presenting some relevant facts and data, and information about how people can have their say on the matter.
In April 2024, Prime Minister Rishi Sunak announced plans to “significantly reform and control welfare”, citing a growing number of people who had become economically inactive since the pandemic. Sunak noted that the cost of disability and health benefits had reached £69 billion – a higher budget than schools, transport, and policing, and representing a 45% increase on 2011 figures. He stated that around 50% of people are claiming due to depression and anxiety, and that the biggest proportion of the increase in claims was by young people.
In response to these figures, Sunak reflected that, since the pandemic, “something has gone very wrong”. He commented that “people are not three times sicker than they were” and the only explanation he seemed able to provide for this rise in figures, was what he referred to as “sick note culture” and the “overmedicalisation” of everyday worries and challenges. Such language promotes a harmful rhetoric and dismisses the debilitating and genuine challenges that we know people are facing and that will undoubtedly be having a direct impact on rising levels of mental ill health and barriers to work. Let’s explore some of them…
Cost of Living Crisis
Since 2022, the cost of living has skyrocketed in the United Kingdom (UK). People are faced with higher mortgage bills and rent, a significant rise in food costs, increased car and home insurance costs, and higher phone and internet bills. A review by a top economic think tank said that income growth and living standards are the worst they have been for generations and 77% of the public think that Sunak has done a bad job of addressing the cost-of-living crisis. In 2023/24, more than 4 million children (30%) were living in relative poverty in the UK – 100,000 more than the year before. Disabled people are impacted more than anyone else by rising costs. It is estimated that the extra cost of disability is equivalent to 63% of household income after housing costs.
Long Waiting Lists for Health Care and Mental Health Support
Despite Sunak’s pledge to reduce NHS waiting lists, they have actually grown to record highs within his term – and yet the budget for the NHS is being decreased. Recent figures show that, when inflation is considered, the NHS budget will be reduced by £1.3 billion in 2024/25. In the first year (21/22) of their National Autism Strategy for England, the government committed to reducing autism diagnosis waiting times and decreasing waiting lists. However, in December 2023, over 170,000 people were waiting for an autism assessment in England, 47% up from the year before.
Recent statistics from March 2024, have shown that, of the almost 1 million children and young people referred for mental health support in 2022/23 (predominantly for anxiety and crisis support) only 32% have received support. The rest are either still waiting (28%) or have had their referral closed before accessing support (39%). In September 2023, more than 1.8 million people were on the waiting list for mental health support, with services unable to keep up with demand, being described as overstretched, under staffed, and under resourced.
Unacceptable health inequalities remain, with LeDeR statistics showing that 42% of deaths were deemed “avoidable” for people with a learning disability in 2022. The latest data for suicide rates in the UK shows that 5,284 suicides were registered in 2022, 65 more than the year before.
Criticism of the UK’s Disability Rights Approaches
In November 2016, an investigation by the United Nations (UN) Committee on the Rights of Disabled People reported “grave and systematic violations” of disabled people’s human rights in the UK. A follow up report by the UN, published in April 2024, stated that, despite having 8 years to make changes, that there had been “no significant progress” and that there were even signs of things getting worse. The UN stated that the UK Government had “failed to eliminate the root causes of inequality and discrimination” and described our social security system as having “a pervasive framework and rhetoric that devalues disabled people and undermines their human dignity” and that “reforms within social welfare benefits are premised on a notion that disabled people are undeserving and wilfully avoiding employment (“skiving off”) and defrauding the system. This has resulted in hate speech and hostility towards disabled people.”
Despite the PM labelling his planned benefit reforms as a “moral mission”, he made no mention in his announcement about any of the above issues, or any plans to address these systematic failures. Instead of focussing on the underlying issues and thinking about how we can make employment more accessible and inclusive for disabled people, he has instead chosen to shame and “other” those disabled people who are unable to work. Various disability rights organisations have spoken out against Sunak’s plans. Inclusion London have said that the planned reforms will “cost lives and unleash misery”, the Disability Poverty Campaign Group have described the announcement as “chilling”, “threatening”, and “stigmatizing”, and Disability Rights UK have branded the plans as an “onslaught of attacks” on disabled people’s rights, in their open letter to the PM on the 7th May 2024.
In his announcement, Sunak promoted the benefits of employment, saying that “work gives you the chance not just to earn, but to contribute, to belong, to overcome feelings of loneliness and social isolation.” He said, “the focus is on the work you can do, not what you can’t”, and that “we must never tolerate barriers that hold people back from making their contribution and from sharing in that sense of self-worth”. Having previously managed an employability and benefits service for autistic people, I have seen first-hand the positive impact that gaining paid employment can have. Yet I have also seen the enormous challenge it is to navigate this process, working from within a system which is inherently inaccessible, with employers who may have little understanding (or inclination to provide) reasonable adjustments, supporting people who are traumatized and struggling with mental health as a result of previous rejections, bad experiences, and workplace discrimination. The desire to work is there, but the support is not. In a survey by the National Autistic society, 77% of unemployed autistic people said they wanted to work, but only 12% of autistic adults receive employment supports.
The assessment process for Personal Independence Payments (PIP) is already wholly inaccessible and requires the disabled claimant to parade all of their most vulnerable challenges and struggles to a complete stranger so they can form a judgement about whether or not they are “impaired enough” to be eligible for support. Individuals with invisible disabilities, such as people with mental health challenges, autistic people, and high masking individuals, are often met with ableism and a dangerous lack of understanding. Statistics from the National Autistic Society show that 75% of autistic people found benefits forms difficult to complete, 86% said their claim took too long to process, and only 19% felt that their assessment meeting took place in a suitable location. Currently, the Equality and Human Rights Commission is investigating whether the Secretary of State for Work and Pensions, or his employees or agents, have broken equality law, by failing to anticipate or provide reasonable adjustments for disabled people and people with mental health conditions, during assessments for PIP and other benefits.
So, the system definitely isn’t working for disabled people, and reform is needed, but that reform should be based on consultation and co-production with experts by experience, and should be focussed on support, reasonable adjustments, and inclusivity. The Governments proposed actions include replacing cash payments with vouchers and one-off grants, placing greater responsibility on underfunded local authorities and NHS bodies to enhance services and support, tightening the eligibility criteria, asking people to pay for things themselves and then claim the money back, and suggesting that eligibility for PIP may be based solely on a person’s diagnosis rather than how it affects their day-to-day life. Yet, disabled people are diverse individuals with unique and multifaceted lives and experiences, even within diagnostic groups. Autistic people, for example, can have wildly different support needs from person to person and I fail to understand how any benefits assessment could simply choose to remove all person-centred information from the decision-making process. The government has drawn attention to ‘people who need someone or something to remind them of what they need do to’ and asked, ‘do you think needing a reminder shows that a person needs to keep getting PIP?’. For some people, such as those with ADHD for example, having support with reminders and executive functioning is absolutely vital to meet the demands of daily life and maintain wellbeing – without it, individuals may struggle to function and fall into burnout and poor mental health. To me, the proposed reforms represent a lack of understanding, a devaluing and invalidation of the suffering of many, and a tactic to simply force disabled individuals into work without any clear plans for inclusivity measures, support, or reasonable adjustments. I am absolutely convinced that if these plans come to fruition, there will be a huge spike in mental health issues and crisis, on top of a mental health system that is already fit to burst.
In his speech, the PM flippantly commented “you don’t get anything in life without hard work.” In my opinion, disabled people, and people with mental health challenges and long-term health conditions, work harder than most of us every single day. They have to work hard just to be heard and have a voice, to get the support they need and are entitled to, to access medical treatments, to be respected, to tackle discrimination and inequalities, to receive reasonable adjustments, and to be treated as valuable and equal members of our society. I can only hope that whichever party is elected to government in July 2024, listens to the voices of experts by experience and co-produces plans with a genuine focus on citizenship, empowerment, inclusion, and accessibility.
The Government has released a Green Paper about their planned changes to PIP. The Green Paper includes a set of consultation questions to gather people’s opinions about the proposed reforms. The Department for Work and Pensions have created an easy read version.
On Thursday 27th June 2024, Inclusion North is holding two webinars (10:30am and 6pm) for people with a learning disability and autistic people, to talk about the governments ideas and share information about how people can get involved and share their views. If you or someone you know is interested in coming to one of these webinars, please email melissa.peacock@inclusionnorth.org or telephone 0113 2444792.
Hayley Matthews
Regional Manager
Inclusion North
Note: The views shared in this blog are my own (Hayley Matthews) and do not necessarily reflect the views of Inclusion North as a whole.
References
https://www.autism.org.uk/what-we-do/news/autism-assessment-waiting-times-
https://www.autism.org.uk/what-we-do/news/consultation-on-changes-to-pip