Opinion piece: When is a scandal not a scandal?

Scandals do not just happen. They are made. They are constructed out of such everyday tragedies as the small carelessnesses and institutional brutality of the long stay hospital, the abuse of children or the violent deaths of innocent bystanders. (Butler & Drakeford, 2005) [1]

This is a piece written by Katherine Runswick-Cole, part of the humanactivism.org team

Seclusion, sedation, restraint and uninvestigated and preventable deaths were the subject of Channel 4’s Dispatches programme on 1st March, 2017.

Bill, a forty-one year old man, died from acute constipation. In an NHS funded hospital. In 2017. In Britain.

Fauzia was locked up for 22 months, and spent most of it in isolation in a cell-like room. Her crime? Being a person with autism and a learning disability.

Matthew was subjected to numerous face-down restraints, was left with excrement in his shoes and was pulling out his hair while locked up.

I was sure I was watching the making of a scandal. My Twitter feed, full of disabled people, parents, activists and academics told me that too - #outrage #heartbreak #scandal.

When I put BBC’s Radio 4 The Today programme on this morning, I was expecting to hear more outrage, more upset, more about the scandal. It wasn’t in the headlines at 8.00am or at 8.30.

A quick skim of the online front pages of The Mail, The Express, The Sun, The Mirror and BBC Online and no mention, though the programme had been trailed by them the day before.

We’ve been here before of course with BBC Panorama’s Winterbourne View programme aired in 2012. A brief flurry of press interest, followed by a range of ineffectual policy initiatives, which mean that 5 years later, despite the government’s pledge to bring people home, 2,500 people with learning disabilities are still living in hospitals.

The careless care, the abuse and the deaths (uninvestigated) continue.

So, back to my question, when is a scandal, not a scandal? Answer: when those affected are people with learning disabilities and their families.

This is what we have to change.

And as the programme showed last night we know what good care looks like. We know what it means for people with learning disabilities to be well supported in their communities. We know the importance of supporting people, who want to, into work. And we know that we must support a thirty-year tradition of self-advocacy in this country so that people with learning disabilities’ voices are heard.

We know what works – now we need to make it happen.

[1] Butler, I. and Drakeford, N. (2005) Scandal, Social Policy and Social Welfare Online at: https://policypress.co.uk/scandal-social-policy-and-social-welfare#sthash.ncu47Pr5.dpuf

The disability employment gap: we know what works but successive governments are just not doing it

The government has published its long awaited Green Paper on work health and disability, and as one Twitter user commented with deep irony, ‘try to contain your enthusiasm’. But what are the implications for people with learning disabilities?

This reaction to the publication of the green paper is hardly surprising when you know that the UK’s disability employment gap stands at about 32% with less than half of disabled people in work - 48%. This compares with 80% of their non-disabled peers who are in work. If you are a person with a learning disability, your chances of being in paid work are woefully low – about 5.8%. This figure has changed little over the last twenty years, but shockingly, in realm terms, it is currently falling.

Successive governments have failed to address the disability employment gap. The hope, then, is that the publication of the consultation paper will re-ignite the debate about disability, health and employment. There is a desperate need to talk about work in the lives of disabled people. Many people with learning disabilities can work and want to work. An employment rate of 5.8% represents a scandal – it represents the exclusion of people with learning disabilities from the many benefits of working life: financial wellbeing, health and community inclusion. But not all disabled people are able to work and so access to work can never be the only route for people to feel secure, financially and emotionally, and included in society.

At the same time as the government hails work as the route out of poverty and marginlisation for disabled people, the support available for them to find work is under threat.

Add into the disability-employment mix cuts to Access to Work and cuts to specialist employment advisers and the future looks bleak.

But it shouldn’t be.

We know that, with the right support, many people with learning disabilities can work. We also know that this support needs to start early and that young people with learning disabilities and their families and allies need good support to make aspirations around employment a reality.

Take for example, Charlie’s story. Charlie was in his late forties when he got his first job, but he has been happily working in that job for the last ten years.

Case Study: Charlie’s Story

Charlie is in his fifties and lives with his wife in a city in the south of England. He enjoys local amateur dramatics, runs and dances. Charlie works for the city council in their meal’s service. The meals service provides hot lunches for people in the city who are in need of their support. Charlie works every day and does a range of tasks during the week including re-cycling, shredding, scanning, filing, cleaning and making teas and coffees. When Charlie applied for the job he was offered a ‘working interview’ where he tried out tasks in order to secure the post. He also had the support of a job coach when he started work. The job coach worked with Charlie to make a checklist for daily and weekly tasks that Charlie uses on a day-to-day basis.

So following our research, our message to government is to do what works:

What works

  • The Department for Education should strengthen employment as a strand within the transition review for young people with Special Educational Need and Disability (SEND) aged 14 - with a requirement to engage with supported employment providers which continues at every subsequent review of the Education, Health and Care Plans (EHC);
  • The Department for Education should allow for the continuation of EHC plans for young people to twenty-five in employment, but not in education;
  • The government should promote the principles and processes of Supported Employment as the key to getting more people with a learning disability into work
  • The government should promote a national register of job coaches backed by emerging quality standards to support training and development;
  • Each local authority should be required to provide opportunities for supported internships linked to good quality job coaching for people with learning disabilities in their area;
  • Each local authority should be required to develop pathways to employment for people with learning disabilities linked to outcomes based commissioning;
  • Employment support should be included as an outcome in personal budget planning.

Written by members of the Humanactivism.org team Katherine Runswick-Cole*, Dan Goodley ** & Keith Bates***

* Manchester Metropolitan University, **The University of Sheffield, ***Mutually Inclusive Partnerships

Opinion piece: UN Report November 2016

The United Nations has published a highly critical report which states that says the rights of disabled people to live independently, to work, and achieve an adequate standard of living have been negatively affected by austerity measures in Britain.

Our research findings (humanactivsm.org) suggest that the government should take the findings of the report seriously and supports calls for a rights-based approach to welfare reform.

The UN inquiry is the first time that any country has been investigated for breaches of the rights of disabled people. While the Government has issued a strong rebuttal, claiming that the focus of the report is too narrow and therefore inaccurate, the report reflects findings from than 200 interviews and some 3,000 pages of documentary evidence and has been widely welcomed by disability activists and campaigners.

It is time for the government to address #disablism&austerity

The impacts of the cuts on people with learning disabilities

The political fall out after George Osborne’s recent budget raised huge questions about the morality of austerity and its real impacts upon the lives of disabled people. So, what impact have the cuts actually had on people with learning disabilities?

At the time of writing it remains unclear what his government is planning to do now in relation to future welfare cuts. What we can be more clear about is this; that previous austerity measures have had long-term consequences for people with learning disabilities. It was announced in 2015 that a United Nations inquiry is investigating alleged violations of the human rights of British disabled people as consequences of austerity welfare reforms. The hard-won human rights of people with learning disabilities to live independently have been eroded through cuts to benefits and social care.

High profile cases of abuse and neglect, in institutional and service settings, have demonstrated that people with learning disabilities experience everyday disablism. The case of Winterbourne View has galvanized campaigners to expose institutional abuse as a major cause of health inequalities. Just as the murder of Stephen Lawrence revealed systemic racism, a number of high-profile preventable deaths of people with learning disabilities in health, social care and community settings expose widespread institutional neglect.

Those most at risk are people with profound and multiple learning disabilities. People with learning disabilities are increasingly more likely to experience poor physical health, increased social isolation, mental ill-health and criminal justice system. Our concern is this – that poor health indices risk being further exacerbated by a number of recent austerity policies:

  • Declining support as a consequence of the closure (in June 2015) of the Independent Living Fund, which previously provided funding for around 18,000 disabled people to work and live in the community. Money has been transferred directly to local authorities and is no longer ring fenced.
  • The government aims to cut the budget by 20% as it phases out Disability Living Allowance and replaces it with Personal Independence Payments;
  • The reduction of benefits through the introduction of Employment Support Allowance and the Work Capability Assessment (replacing Incapacity Benefit) to identify more people as 'fit for work';
  • In 2015, 400,000 fewer people are receiving social care than in 2009-10.

Will life get even harder for people with learning disabilities? Our sad conclusion is that things can only get worse in these austerity times. Just as many disabled people worry that a Brexit will further strip away their human rights we are still to learn of the long-term impacts of austerity on disabled people and their families.