Living through Austerity with a Learning Disability | by Neil Carpenter

In recent years, the impact of austerity on people with disabilities has been largely overlooked by the mainstream media. There are exceptions: Frances Ryan, for example, has highlighted how people with disabilities have been disproportionately affected. Little, however, has been written about austerity’s impact on people with a learning disability.
In 2012, as government measures were beginning to bite, I started work as a volunteer advocate for adults with a learning disability in Cornwall, going into day centres, running a drop-in advocacy session and visiting people in their homes. My initial impression was that nearly everyone I met seemed poor, as if poverty was an almost inevitable part of having a learning disability. I wanted to see if that impression of poverty was accurate and set about writing ‘Austerity’s Victims’, a detailed account of five men with learning disabilities living in Cornwall, with the aim of exposing the injustices they and others have experienced as a result of government policy.

Five Case Studies

The ages of the men – whose names have been changed to protect their identities – range from late 20s to over 60. Mark is in his late 20s and his life, particularly his accommodation, lacks any planned stability. Les, nearing pension age, was born with brain damage and is often bitter at what life has brought him. To use his own words, ‘I didn’t ask to be bloody born like this’.

Family support for the five men varies from nothing to the comprehensive back-up received by Thomas who has Down’s Syndrome. In his early forties, he lives on his own but his mother provides lots of support which is a key factor in the quality of life he enjoys.

Mark and Danny attend a day centre while the others receive support at home. One of them is Frank: autistic and very unobtrusive, he withdraws into near-invisibility in his neighbourhood.

Working with the five men, I have been able to compare their spending with UK and Cornwall medians and with the Joseph Rowntree Foundation’s Minimum Income Standard which is ‘what you need in order to have the opportunities and choices necessary to participate in society.’ Or, put more bluntly, ‘a minimum is about more than survival alone’.

The men’s spending averages 71% of the Minimum Income Standard, 55% of the Cornwall median and 48% of the UK median.  Relative poverty according to the most widely used definition is when a household’s income is below 60% of UK median household income. While the data I have used concerns spending rather than income, the one is clearly derived from the other, with only Danny having any money left at the end of the week – £12.48 as a result of giving up smoking. It is therefore fair to conclude that the men’s income is below the relative poverty threshold.

Less support, lower quality of life

The Care Act (2014) introduced eligibility criteria, placing an individual’s wellbeing ‘at the heart of care and support.’ Recent research led by Forrester-Jones has shown that despite the stated aims of the Care Act, many people have since 2008 lost care or their care has changed, with an inevitable negative impact on their wellbeing and quality of life.

A similar picture emerges in the lives of the men in my book. All five have had their support hours at home or their day centre attendance cut. The three who have funded support hours have seen them reduced by an average of 27%. Mark now has his day centre place only half-funded; Danny has had Adult Social Care funding removed completely. Quality of life has suffered: with limited opportunity to go out and mix with others, they lack the friends that most of us take for granted. Loneliness is a real problem – as Les says time and again: ‘It’s the evenings I can’t stand.’

Benefit cuts

When the book was published in 2018, two of the five men had also seen their benefits cut. Frank failed to have his Disability Living Allowance transferred to Personal Independence Payments (PIP). Danny was suddenly deemed 36 years after his motor-bike accident to miraculously have become fit for work without his Employment and Support Allowance. The decision removed £116.50 of his weekly income, leaving him with £43.60 a week on which to survive.

Since publication, this unjust treatment has continued, with both Danny and Thomas having to contest new Department of Work and Pensions (DWP) decisions at the tribunal stage. They are not alone. Their cases are two of eight such appeals I’ve been involved in over the last eighteen months and, on every occasion, decisions have been overturned by a massive margin.

All of the disputes (apart from Thomas whose appeal concerned ESA) have arisen from PIP decisions. The PIP assessment framework is made up of two areas, ‘Daily Living’ and ‘Mobility’. Each area is assessed separately and broken down into ‘activities’, such as ‘preparing food’, ‘communicating verbally’ and ‘planning and following journeys’, for all of which points can be awarded. In each area, an applicant needs between 8 and 11 points for the weekly standard rate (currently £59.70 for Daily Living and £23.60 for Mobility) and 12 points or more for the weekly enhanced rate (currently £89.15 for Daily Living and £62.25 for Mobility).

In one typical case, a woman with a learning disability who had been given 0 points by the DWP was,  at a tribunal, given 11 points for Daily Living and 10 points for Mobility, resulting in a PIP Standard award for both.

Such tribunal verdicts serve as a reminder that the injustice highlighted in ‘Austerity’s Victims’ is not a snapshot from the recent past: it is still with us today.

Covid-19

The injustice has, of course, been compounded by the Covid-19 pandemic. To give one example: a man I work closely with – referred to briefly in ‘Austerity’s Victims’ as Jonathon – has autism and fibromyalgia among other conditions. The pandemic has disrupted his routines and he has been so disorientated by the way the world has changed that he cannot go into his local shop, partly because of its new layout but also because of increased anxiety over how closely people might approach him. His isolation has intensified and has in turn been worsened by a Covid-related failure to appoint a new Personal Assistant who would in normal times have provided 9 of the 13 weekly support hours allocated in Jonathan’s Care and Support Plan. Isolation and a lack of support: an all too familiar story.

If as a result of reading this blog, you’d like to read ‘Austerity’s Victims’, the links below show where it is available.

Print version:  http://www.amazon.co.uk/dp/1984977601

Kindle: http://www.amazon.co.uk/dp/B07D3PVC8G

Alternatively, contact me (Neil Carpenter) for a copy at killingyousoftly@outlook.com

 

Incidentally, my aim is not to make a profit on sales but rather to get through to as many readers as possible and show how poorly people with a learning disability are treated. The print version is therefore for sale at cost price and the e-book version at only 99p.

 

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References-

Care and Support Statutory Guidance Issued under the Care Act 2014 Department of Health October 2014 – p.7 section 1.2. Available at www.gov.uk/government/publications free of charge in any format or medium, under the terms of the Open Government Licence v.2.

Davis, A. Hill, K. Hirsch, D. and Padley, M. (2016), ‘A Minimum Income Standard for the UK in 2016’: Joseph Rowntree Foundation.

Forrester-Jones, R., Beecham, J., Randall, A., Harrison, R., Malli, M., Sams, L., & Murphy, G. (2020, Jul 7). Becoming less eligible? Intellectual disability services in the age of austerity. National Institute for Health Research School for Social Care. https://www.sscr.nihr.ac.uk/SSCR-research-findings_RF100.pdf.

HM Government (2014). Care Act 2014, London, HM Government.