A grieving teenager is exposing the grinding reality of everyday discrimination, and the results could be transformative, says Guardian columnist Adita Chakrabortty
Black British sportspeople are seizing the moment to speak out about racism and poverty, says author Derek Bardowell
Year-long campaign will focus on disability and health inequalities, challenging providers to improve services
Should being in good health look different for someone who is deaf? How do you know if a person with autism is unwell if they cannot tell you? These are among the questions all social care professionals – from care managers to nurses – should be asking to tackle the significant health inequalities experienced by people with disabilities.
For the 13.3 million people in the UK who live with a disability, being as healthy as possible should be a given, but too often their medical needs are neglected or ignored. Barriers to accessing services, a lack of knowledge and skills among staff, and a failure to prevent problems are among the causes highlighted by the World Health Organisation.
Health inequalities are a significant reason why people with disabilities are four times more likely to die of preventable causes than the general population. Deaf people are twice as likely to have undiagnosed high blood pressure as hearing people, according to charity SignHealth. They are also more likely to have undiagnosed diabetes, high cholesterol and cardiovascular disease.
People with disabilities also often live shorter lives, and early deaths among people with autism and Down’s syndrome are a key concern; on average, their life expectancy is nearly 20 years less than the general population, their risk of dying from heart-related diseases is three times higher, and the odds are even greater with respiratory diseases such as pneumonia.
Nurses and care workers can also reach the wrong assumptions, especially if the person they are supporting is not able to say they are ill. A person with a learning disability may be denied pain management because they cannot tell a doctor they are in discomfort. They may not access services in the first place because the struggle to make themselves understood is too great. What’s more, these services may not be designed with their needs in mind.
To help tackle these issues, Turning Point has designed a simple online guide, with the hope that support workers use it to advocate more on behalf of the people they are supporting at GP appointments.
The NHS has stated that reducing mortality rates is a priority and has commissioned a review. Managed by researchers at the University of Bristol, the Learning Disabilities Mortality Review Programme aims to understand the circumstances behind these premature deaths and improve services for people with learning disabilities. Healthcare professionals are being encouraged to notify the programme of the deaths of any of their patients, and to be involved with a review of why they died.
As well as failing to receive medical support, people with learning disabilities can be over-medicated, too. The inappropriate use of drugs to manage mood or behaviour can create long-term side-effects including weight gain, organ failure and even premature death.
On an average day, up to 35,000 people in England with a learning disability or autism (or both) take these medications without appropriate clinical justification. This has led to a call to action by user groups, professional bodies, the Voluntary Organisations Disability Group (VODG) and NHS England to stop this practice.
Called Stomp, the campaign’s pledge has been signed by 127 organisations and seeks to improve the quality of life and health of people with learning disabilities by ensuring they receive the right amount of medication – and for the right reasons.
Progress on this issue requires simple steps, such as encouraging people with disabilities to have regular medication reviews with GPs and supporting health professionals to involve them in decisions.
With more than 80 members, including Turning Point, VODG represents organisations supporting more than one million disabled people. Its goal is to challenge providers to take action and improve services.
To achieve this, it has set up a working group to investigate what members are doing to tackle unjust differences in people’s health, to learn from each other and to promote good practice across its membership. We highlighted the issue at a conference in Birmingham this month, discussing action plans that resulted in those who attended signing pledges. The pledges will be posted on the VODG website and members will be emailed in six months to measure progress.
We do not want to reinvent what is already out there but to learn and promote what works. For example, monitoring forms are being developed by Sense to check on the health of people with congenital rubella syndrome.
Independence, choice and control are as important for people with disabilities as anyone else, but they will not have these unless we create services that are progressive, high quality and sustainable.
- Fiona Ritchie is managing director for mental health and learning disability services at Turning Point and a trustee at the Voluntary Organisations Disability Group.
Source : People with disabilities have the right to good health too : The Guardian
When launching a new or revision of benefit it is usual practice to do this, initially, via a pilot where any problems can be noticed and sorted before an enlarged rollout. It is my understanding that such a pilot was under took for Universal Credit and with the degree of current problems should not been subject to the larger rollout until the problems had been sorted. To reduce the intendant rollout should never have been considered, let alone allowed to occur. To many if not all of the claimants the benefits they receive are their only sources of income and they should not be expected to exist on no income for any period of time, let alone 6 weeks.
This is gross incompetence on behalf DWP and to say they are working with local authorities to provide extra support at a time when the Government is drastically cutting local authority funding is adding insult to injury. DWP have for some many years proved they and their processes are ‘not fit for purpose’.
The first benefits “fauxtrage” of 2017 is upon us, barely a week in. Harrumpher-in-chief Phillip Schofield decided that the best use of his time was to shake his head patronisingly at a woman who had the gall to buy two bottles of prosecco on her “Christmas bonus” – a pittance added to her benefits payments. This leaves the tabloids free to engage in their ceremonial monstering of someone who bought a tenner’s worth of fizzy wine while not being currently retained by an employer.
Moaning about the fecklessness of the poor is a national sport that predates the introduction of the chip shop – the patronage of which (“with my tax money!”) is likewise cause for public tut-tutting. “Would it not be better,” asked George Orwell in 1937, “if they spent more money on wholesome things like oranges and wholemeal bread or if they even … saved on fuel and ate their carrots raw? Yes, it would, but the point is that no ordinary human being is ever going to do such a thing.”
“Unemployment,” he continues, “is an endless misery that has got to be constantly palliated.” The disagreement on this issue is not on the misery of poverty and unemployment, but on the idea that alleviating that misery is a good thing. If the unemployed do not earn their money through hard labour, then they should be expected to earn through suffering.
Anything can be used as an example of the unemployed worker’s fecklessness. Fridges and microwaves can be used to suggest the poor aren’t “really” poor. The screed against the “massive flatscreen TV” is positively ubiquitous, which is one of those things that really demonstrates the kind of alienation from the realities of the consumer electronics market you only get among the middle class. I don’t even know where to go to buy a cathode ray tube TV these days, but I do know you can get a 43” flatscreen for under £250 at Tesco.
The Conservatives’ pernicious treatment of chronically ill and disabled people has made us even sicker. Closing the disability employment gap is not that simple
A huge rise in child poverty, a devastating UN critique of British austerity … these are among the news events our government is hoping we miss
People are encouraged to enhance their lives, but if you are disabled, if you do you are penalised, so were is the encouragement. In this instance mobility is the key to all that enhancement and without the mobility component benefit none of her achievements can be continued. Within the Care Act is the promotion of wellbeing, but the current processing of benefit claims are reducing wellbeing or even removing it completely. The DWP in their processing are working at odds with the Care Act which should not be so. It is that one section of Government is opposing other sections, this is blatant discrimination.
‘…………..By Saba Salman
Shaun Webster, who has learning disabilities, campaigns for learning disabled people to be much more visible in our communities at home and abroad
Shaun Webster endured frequent ridicule from colleagues when he worked in a warehouse, sweeping the floor. In the 12 years since quitting the job, Webster, 43, who has a learning disability, has devoted himself to campaigning for equal opportunities for people with learning disabilities. As an international project worker for the Leeds-based human rights charity Change, he is a sought-after speaker and trainer in the UK and overseas, advising government departments on inclusive employment, promoting access to sex and health education for learning disabled people and on training health, social care and charity professionals in independent living and disability rights.
Webster’s efforts were recognised in this year’s Queen’s birthday honours list with an MBE. He describes the award as an official “two fingers” to his ex-colleagues at the warehouse. While the abuse he suffered there was mostly verbal, he recalls the occasional box being lobbed at him and a “joke” when he was bound with sticky tape and a rag stuffed in his mouth.
“I was being bullied,” he recalls. “I thought: ‘I will be nothing.’ I felt tiny, small.” When he reported the abuse, regarded by the perpetrators as workplace tomfoolery, it would stop temporarily, then resume. Webster says: “What was the point? I’d get called a ‘grass’.”
The experience clearly shaped his outlook. Equal employment has become one of his areas of expertise at Change. While England’s general unemployment rate is falling, the number of adults with severe learning disabilities who do not have jobs is increasing. (In 2013-14, only 6.8% of learning disabled people were in work, compared with 7% in 2012-13). And support to help people with learning disabilities into work is at risk from cuts to local authority budgets.
Webster criticises the government for failing to take a holistic approach to the issue. “Paid employment and independent living aren’t seen together – but they are one. I’ve been working most of my life, I need that to be independent. The money gives me opportunities to do things I always wanted to do – live on my own, go to the pub, go shopping, do everything that people do,” he says.
Webster, from Rotherham, South Yorkshire, works three days a week, earning £23,000 a year, pro rata. A grant from the government’s Access to Work fund covers computer costs and pays for someone to help with paperwork two mornings a week. He receives disability living allowance and any help he needs at home, such as filling out forms, is provided by the charity, KeyRing.
Change’s model of inclusive employment means people with learning disabilities are hired in senior, salaried roles and supported by non-learning disabled “co-workers”. This method, says Webster, means staff develop skills and interests, instead of being paid lip service and shoehorned into menial jobs. “People with learning disabilities want a proper job,” he says, “not just pushing trolleys, but the attitude is ‘you have a job – be grateful’.”
His passion for raising people’s aspirations is also rooted in his childhood. The special school to which he was sent at eight was “a waste of time”, he says, with no careers advice. At age 14, he recalls being “knocked for six” when his father, from whom he is estranged, called him “a dummy”. “He said I’d never get a job, never live on my own or have relationships.” Webster has accomplished all this, and more. He and his childhood sweetheart had three children before they separated. He is now a grandfather of two toddlers and lives in community-based supported housing.
His current focus is a partnership between Change and the children’s charity Lumos, founded by JK Rowling. The Europe-wide project supports the closure of long-stay institutions for young people with learning disabilities and aims to improve services in the community.
In the UK, since the Winterbourne View scandal four years ago, the government has been criticised for delays in moving people out of long-stay units and into the community. Up to 3,000 people should have moved by last June under a deadline set by ministers, but there has been little progress.
“They’re doing it faster in Europe, building small group homes and getting people into the community, here they’re dragging their feet, still putting money into care homes. Other countries are less scared, ready to work with people with learning disabilities,” says Webster.
So what’s the problem? “Attitude,” he says. “There are lots of examples of community living, like KeyRing [a supported living accommodation provider], but it’s not rolled out.” As for commissioners still placing people in institutional-style environments instead of community-based care, “they’re just stuck in their little world, they can’t see what’s out there”.
Recently, he visited the Czech Republic, Bulgaria and Moldova to train health and social care professionals on de-institutionalisation and to mentor young people in care to become better self-advocates. “A young lady from Bulgaria said ‘I want to be like you’. She used to live in an institution and wanted to be a role model. Now she mentors children moving out of institutional care,” he says.
Does Webster sense a tipping point in disability rights, with the emergence of grassroots campaigns, such as the Learning Disability Alliance England and the Justice for LB campaign, to strengthen the rights of individuals and their families, or the self-advocacy group People First England? “It’s starting,” he says, “but we need to make it louder … people want to have proper jobs, to live in the community and not be vulnerable or patronised.”
To challenge the status quo, says Webster, people with learning disabilities – there are 1.4 million in the UK – should be more visible in communities. Politicians must be engaged, he adds. “Before they become MPs, they need to be trained by people with learning disabilities about issues like hate crime, being isolated, living on benefits.” Webster has no interest in being an MP but says a political party of people with learning disabilities might be an idea: “We need our own party to get our voice across to government because we’re the experts in real life.”
Championing the fact that people with learning disabilities can, should, and do have the same “real life” as everyone else, with a job, home and family life, is what drives Webster. He says becoming a father and grandfather are among his proudest moments, along with the MBE. His 12-year-old daughter, who lives with Webster’s former partner in Sheffield, admires her father’s achievements. “My daughter says, ‘My dad works to make things better for people with learning disabilities’”.
The stereotyping of people with disabilities as either scroungers or superheroes is, he says, frustrating: “You have the extremes, but there’s a whole bunch in the middle ground. I have a learning disability, but it doesn’t define me.”
Lives Rotherham, South Yorkshire.
Family Single, three children, two grandchildren.
Education Rotherham College of Arts and Technology (no qualifications); Abbey special school, Rotherham.
Career 2012-present: international project worker, Change; 2003-12: project worker, Change; 1996-2003: warehouse worker, Currys; 1991-96: handyman, Swallow Hotel, Rotherham.
Public life MBE 2015, for services to people with learning disabilities and their families.
Interests Science fiction films, cartoons, spending time with friends.