Living through austerity with a learning disability

Since 2010, successive Conservative governments have made it a priority to ‘clear up the financial mess left by Labour’ through a wide-ranging programme of austerity measures intended to reduce the deficit.

As those cuts were biting, I began working as a volunteer advocate for adults with a learning disability, going into day centres, running a drop-in advocacy session and visiting people in their homes.

My book, ‘Austerity’s Victims’, is based on that experience and was triggered by my initial impression 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. The book is a detailed account of what emerged and aims to bring the injustice experienced by people with a learning disability into the open.

It concentrates on five men in Cornwall – Mark, Les, Thomas, Danny and Frank – all of whose names have been changed and all of whom are different in a number of ways. Their ages range from below 30 to over 60. Mark is in his late twenties 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 them 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 strong support which is a key factor in the quality of life he enjoys. Brain damage and Down’s syndrome are not the only conditions they have to contend with. Danny suffered a life-changing brain injury in 1980 in a motor-bike accident but has since managed to piece his life together again. Mark and Danny attend a day centre while the others receive support at home. One of them is Frank: autistic and very inobtrusive, he withdraws into near-invisibility in his neighbourhood.

In these five case studies, the men’s spending is compared not just with UK and Cornwall medians but also with the Joseph Rowntree Foundation’s Minimum Income Standard (MIS) 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 48% of the UK median, 55% of the Cornwall median and 71% of the MIS. It goes without saying that their income is below the relative poverty threshold.

From the case studies, other common features stand out, as well as relative poverty.

  • All the men have had their support hours at home or their day centre attendance cut. The three who have 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.
  • When the book was published, two of the five men had had their benefits cut. Frank failed to have his Disability Living Allowance transferred to Personal Independence Payment. 36 years after his motor-bike accident, Danny was suddenly deemed to have miraculously changed and therefore be fit for work without his Employment and Support Allowance (ESA). Since publication, Thomas has also fallen foul of the system by being moved to the Work-Related Activity Group.
  • To state the obvious, their 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.’

For all five, their lives fall a long way short of the ‘wellbeing’ the 2014 Care Act says they should be experiencing. One component of ‘wellbeing’ is ‘personal dignity’. In the chapter on Danny and his Work Capability Assessment, his tears at the initial outcome showed how little ‘respect’ (another word from the Care Act) he was given. ‘Personal dignity’ doesn’t even come into it.

For someone like Danny, the surrounding world can feel as though it is against him and the impact on carers and parents is equally profound. For them, there are of course the day-to-day issues to contend with but looming even larger, especially for parents whose lives have been dominated by repeated reviews and assessments, is a fear of the future: what will happen to their sons or daughters when they are gone and there is no-one left to speak up for them? The future, when conditions will not magically improve with age, seems like a minefield through which there will be no-one to act as a guide.

What then should be done to address these many problems? Some steps are obvious from what I have already said: redress government cuts to council funding; carry out a cumulative impact assessment of the effects of austerity on people with a learning disability; and lift them out of relative poverty by raising benefit levels.

Particular change, however, is needed at the Department and Pensions (DWP). Currently, it creates a series of hurdles that appear designed to trip up people with a learning disability, particularly if there is no back-up from family, a support worker or an advocate:

  • the initial phone call to request an application form may well not be completed successfully because of a number of options to negotiate and a frequently long wait in a queue;
  • the completion of the form itself (33 pages for Personal Independence Payment);
  • attendance at a Work Capability or PIP Assessment; and finally, in many cases,
  • requesting mandatory reconsideration of a decision – and sometimes taking an appeal to a tribunal.

As well as reforming this obstacle course, the DWP should introduce life-long benefits for life-long conditions. If these conditions were accurately defined, not only would unnecessary reassessments be ended for many but also the stress for parents and their concern for the future would be greatly eased.

Above all, public awareness of what is happening to people with a learning disability needs to be raised. My book, hopefully, can contribute. While it aims to provide already well-informed readers with invaluable evidence in the fight against this injustice, it also has a second audience in mind: those who know nothing about living with a learning disability and whose eyes should be opened by what they read. So far, the impact on that second audience has been striking, with ‘I’m ashamed to live in a country that treats people like this’ being a typical reaction. That awareness, that shame, is what we need to spread.

Having read this article, if you want to get hold of the book itself, the links below show where ‘Austerity’s Victims’ is available.

Print version


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.