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Ministers’ ‘shocking’ failure to consult DPOs on bill shows UN convention ignorance

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Ministers' 'shocking' failure to consult DPOs on bill shows UN convention ignorance

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The government is facing calls to halt the progress of its mental capacity bill through parliament because of its "shocking" failure to consult any disabled people's organisations about the controversial legislation, in a clear breach of the UN disability convention.

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The United Nations has launched an investigation into poverty and human rights in the UK which will examine the impact of the austerity policies of Theresa May and David Cameron over the past eight years.

The inquiry will be led by Prof Philip Alston, the UN's special rapporteur on extreme poverty and human rights, who angered the Donald Trump administration this month when he concluded after a similar visit to the US that the White House's contempt for the poor was driving "cruel policies".

The fact-finding trip is scheduled for this autumn and will be the first visit to a western European country by a representative of the UN's rapporteur's office since a trip to Ireland in 2011. Alston's most recent inquiries into extreme poverty have taken him to the US, China, Saudi Arabia and Ghana.

"The UK has gone through a period of pretty deep budget cuts first under the coalition and then the Conservatives and I am interested to see what the outcome of that has been," Alston told the Guardian. "I am also interested to look at what seems to be a renewed debate on all sides about the need to increase spending at least for some of the key programmes."

He said the challenges facing the UK were different to the US, where he has concluded Trump's policies were "tailor-made to maximise inequality and to plunge millions of working Americans, and those unable to work, into penury".

Alston said: "In the UK, things are at a different place where there is no great budget surplus to be mobilised. Welfare cuts have taken place but there is now an interesting debate on whether they have gone too far and what measures need to be taken to shore up the NHS and other programmes."

Alston has not yet determined exactly what he will focus on and will shortly invite submissions from groups who want to suggest matters for him to consider. They could include housing squalour, insecurity at work, in-work poverty, mental health and political disenfranchisement.

Alston will arrive as survivors and residents continue to give evidence to the public inquiry into the Grenfell Tower disaster. Many have said they felt their views and needs were ignored or marginalised by the local authority.

"Poverty is often characterised by a lack of political power, by a difficulty in enjoying even basic civil and political rights," said Alston.

The Institute for Fiscal Studies this month found that people with longstanding mental health problems in the UK were more than twice as likely to be in poverty as those without a longstanding health problem.

Destitution, however, has fallen over the past two years, according to the Joseph Rowntree Foundation, although there are fears that the universal credit scheme could reverse those gains.

The number of people unable to enjoy two or more essentials - shelter, food, heat, light, appropriate clothing and basic toiletries - fell by a quarter to 1.5 million from 2015-17 as benefit sanctions eased. Of those rated as destitute, 25% were born abroad.

Torsten Bell, the director of the Resolution Foundation thinktank, said Alston would see a changed picture of poverty in the UK. "Twenty years ago, poverty in Britain was concentrated among pensioners and workless households," he said.

"Now poverty has moved into the workplace with more than half of the children growing up in poverty in working households."

Meghan Campbell, the deputy director of the Oxford Human Rights Hub, cited Brexit as a looming issue because employment protections were threatened by withdrawal from the European Union.

She said rising costs of child and elderly care would particularly affect the ability of women to be economically independent.

Alston said: "No one is suggesting the conditions in the UK are those of a poor developing country, but every rich country, as my mission to the US showed, has pockets of poverty everywhere.

"The government statistics and a diverse array of civil society organisations would suggest the UK does have important challenges dealing with poverty."

The shadow chancellor, John McDonnell, welcomed Alston's plan to consider the impact of austerity.

"Austerity is a political choice made by Tory-led governments that cut spending on vital public services whilst, at the same time, handing out tax giveaways for giant corporations and the super-rich," he said.

"Only last year, a separate UN investigation concluded that Tory spending cuts trampled on the human rights of disabled people, whilst the Institute for Fiscal Studies forecasts child poverty to hit record levels in the next few years."

Previous UN missions to the UK have been highly controversial. In 2013, Raquel Rolnik, the UN rapporteur on housing, proposed the government suspend cuts to what it calls the spare room subsidy but is widely known as the bedroom tax and affects residents of social housing with spare rooms. Her report was dismissed as "a Marxist diatribe" by the then housing minister Kris Hopkins.

Alston is an Australian international human rights law expert currently based at New York University. When he toured the US, he studied homelessness on Skid Row in Los Angeles, poverty in African-American areas in Alabama and the stricken coal country of West Virginia. He has been a UN rapporteur since 2004 and has specialised in extreme poverty and human rights for the past four years.

A government spokesperson said: "The UK has a close working relationship with UN bodies and is committed to upholding the rule of law and rules-based international system. The UK has a standing invitation to all special rapporteurs, and it is UK government policy to accept and facilitate such visits, and to encourage other UN member states to do the same.

"Household incomes have never been higher and there are one million fewer people living in absolute poverty than in 2010, including 300,000 children. Poverty rates are falling while the employment rate is increasing which is really encouraging, and we're committed to ensuring that every child gets the very best chances in life."
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UN to investigate Tory record on poverty and human rights

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The United Nations has launched an investigation into poverty and human rights in the UK which will examine the impact of the austerity policies of Theresa May and David Cameron over the past eight years.

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As someone with a physical disability, the list of things that needed arranging before I went to university was longer than my non-disabled peers. This included how my support needs would be met.

This was a huge hurdle from the get go. After my social care assessment the social worker informed me that it was quite possible I would not have any support funded. I remember asking how I would manage to go to university with no care support. She casually said I wouldn't be able to and once I left my residential college I would go back to living with my mum who could care for me. However, thanks to a very supportive tutor I was eventually given the funding I needed.

I knew I wanted to be in control of who supported me and when, so rather than a council funded care agency I opted for having a Direct Payment which enabled me to recruit who I wanted and ensured I was in full control of the support I received.

The reality of this meant that aged 20, with just 10 minutes of someone running through my employment responsibilities and now living 2 hours away from home I was an employer. It was a new experience to have to train my novice team of PAs and learn how to direct my care. Most people choose to go into management, often after some time in employment, building their experience. This management role was put on me with no training or support and I was left to work this out for myself. I also have great difficulty recruiting people who see this as a real job (this could be a blog in itself!).

Managing people who see you naked!

I believe PA relationships are probably one of the most complicated working relationships there is. This is largely due to the blurred boundaries. Putting it bluntly, I doubt there are many other jobs where an employee sees their boss naked on a daily basis and has to support them with the most intimate tasks. This makes for a difficult dynamic when issues arise. In usual employment, a manager could give an employee a warning and they both then get on with their individual jobs. With my PAs their job is my life. The fear of tense atmospheres and PAs walking out on me have caused me to put up with things that I'm not happy with. This is the downside of having total control!

Despite these challenges being able to employ PAs has been liberating. I now live independently and work. In addition to the practical aspects of life, my PAs also enable me to have a good social life and have been an invaluable support to me over the years, both physically and emotionally. Without the help of my PAs past and present I know I wouldn't be the person I am today.

My assistance dog is part of my Direct Payment and saves the council money!

There is a common misconception that Direct Payments can only be used to employ people. I have an assistance dog called Folly who was trained by Canine Partners. After a long fight I was able to have her added to my care plan and her weekly expenses are covered through my Direct Payment. In my eyes this is a win win situation for both me and the council.

I only have PAs for a certain number of hours per week so Folly is effectively my 24/7 carer, always on hand if I need help. She does a large number of tasks which aid my independence. I find it difficult to ask people for help but that is non-existent with Folly as she sees all her 'work' as a game and is actually delighted when I need her help. This too has been liberating for me, along with the positive effects she has had on my mental health and confidence.

Although employing PAs gives me a lot of control there is still a lack of flexibility as people need to know when I need them to work which often requires me to plan my life around this, leaving little room to suddenly decide to do something different. This is when Folly really comes into her own!

What time would you like to go to bed on Thursday next week? You don't know? Me neither but these of are the types of plans people who rely on support often need to make. Folly has given me the freedom to choose when I go to bed. It doesn't matter to her whether it's 8pm or 3am. She will undress me, pull my duvet back, lift my wheelchair footplates up, be on hand to fetch the phone if I fall and finally turn the bedroom light off. The costs of Folly's weekly expenses are equivalent to just over 4 hours of PA support so not only is Folly giving me more control over my life, she's saving the council money as I would need much more PA support without her.

My Direct Payment has given me the choice and control I wouldn't otherwise have had and the effect of this has been life changing for me. Being an employer isn't easy and as the use of Direct Payments and Personal Health Budgets increases I hope the support and training is there to help people take control over their lives, ultimately enabling them to lead ordinary lives.

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Katy brings her own lived experience to the role of Quality of Life Facilitator, which she was recruited to in the summer of 2017. She has experience of working both locally and nationally on issues around disability.

Mental Health Newsletter August 2017

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The People's Parliament is a strategic body led by MPs with recent lived experience of mental health difficulties. Its function is to hold decision makers to account for improvements in services and supports so that people who experience mental health difficulties can have an improved quality of life and be in greater control of their own mental wellbeing. The Parliament is located in the Metropolitan Borough of Sandwell, just outside of Birmingham.

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As someone with a physical disability, the list of things that needed arranging before I went to university was longer than my non-disabled peers. This included how my support needs would be met. This was a huge hurdle from the get go.

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To a female CEO: "Can I speak with your boss?"

To a man who's a nurse: "Wow, you don't see many male nurses."

To an LGBTQ intern: "Huh, you don't sound gay."

To a non-white colleague - in a mostly white office: "So, where are you from? ...No, I mean, where are you really from?"

To a mixed-raced person: "What are you?"

Welcome to the world of microaggressions: brief queries, comments or actions sprinkled throughout day-to-day life that make others - particularly those in marginalised groups - feel bad about themselves.

A slow accumulation of these microaggressions can lead to low self-esteem, feelings of alienation and eventually even mental health issues, researchers warn. They can also create a toxic work environment.

There are steps you can take to handle these delicate situations - whether you're on the receiving end, or you're the one unknowingly doling them out.
Where microaggressions can happen
Unlike hate speech, microaggressions are not intended to be malicious, even though the impact might be.

But they don't have to be spoken. They can be tiny actions, too - ones that most onlookers might not even notice, let alone describe as offensive.

Not sitting next to someone on a train, for example. Or interrupting someone during a meeting, or assuming someone speaks the same language as you because you're the same race - or assuming they don't because they're not the same race - or gawking at people who look different as they walk past.

It makes the people experiencing the aggression feel different, weird, someone to be suspicious of, or even feared.

"When a student says to me, 'Dr Sue, I really liked that presentation - oh and by the way, your English is very good,' my comment is: 'thank you, I hope so - I was born here," says Derald Wing Sue, a professor of psychology and education at Columbia University in New York City. He's Asian-American and was born in Portland, Oregon.
Why are they damaging?
There are some who think that microaggressions are much ado about nothing. They might say that microaggression is a product of political correctness, or that it causes a walking-on-eggshells sort of atmosphere. Op-eds in media outlets have claimed that it fosters " a culture of victimhood."

"I understand the people who are saying, 'don't be a whiner,' 'enter the real world.' What they don't understand is what the real world is like for people of colour [for example]," says Sue.

That student complimenting Sue probably thought they were doing just that - paying him a compliment.

But in actuality, the comment sent a message to Sue that he, despite being an American, is an outsider. And because this has happened over and over throughout his life, he says these comments make him feel like a foreigner in his own country of birth.

And herein lies the problem with microaggressions: slow-building, incremental damage that snowballs into something a lot bigger.

Uppala Chandrasekera is the director of public policy at the Canadian Mental Health Association in Toronto. She says that "to onlookers, [the reaction to a microaggression] may seem disproportionate. 'Why is that person so angry? I meant it as a joke or a compliment.' But the person is not just reacting to what happened today." They're also reacting to something that happened five days ago, five months ago or five years ago.

"We always remember the first time it happened," Chandrasekera says, referring to the first time we might experience discrimination in our lives. "It's a deeply painful moment. Because it's so painful, we end up storing it away in a box. But, the body remembers the trauma, so the next time it happens, it triggers [a reaction]."

Subtle discrimination compounds over time, Chandrasekera adds, leading to stress and anxiety at best or drug or alcohol addictions at worst.
How to take action

So what do you do if you see or hear this happening at work?

"The best thing to do in that moment is acknowledge that it happened," Chandrasekera says. "The person is feeling very much alone. They're very 'triggered,' because it's not the first time it's happened," she says, referring to microaggressions' repeating nature. Ask if they're OK or if they want to talk, she adds.

"Checking in with them is important because that goes a long way in mental health, in terms of social inclusion," she says.

If you are on the receiving end, Sue suggests microinterventions - comebacks that simultaneously "disarm the microaggression but also educate the perpetrator," he says, for example, when he told the student who said he spoke good English that he was in fact born in the US.

Sue, who specialises in racism and multiculturalism, reminds us that "no one is immune from inheriting racial, gender or sexual biases in our society."

If someone calls you out on something that has offended them, don't get emotional or defensive. Be patient, hear them out, ask what you said or did so that you can better understand what the person is saying.

"It is very important that we do a lot of self-work and understand what biases we have," he says. "Making them explicit allows us to deal with them."

Providing a platform for those who experience these constant, tiny slights could also help fight discrimination. The Microaggression Project website was launched in 2010 for that purpose.

At last count, there have been over 15,000 online submissions, each chronicling a different microaggression.

"They have come from almost every community of marginalised identities in Western society, including racial minorities, women, a variety of LGBT communities, socioeconomic classes, migrant communities, and the disabled community," said David Zhou, one of the co-founders of the project, in an email.

"What our project strives to do is to amplify their voices and to provide rich detail to these experiences."
Pushing your company to do better
Workers who feel beaten down and discriminated against are less likely to show up and give 100% every day, Chandrasekera says.

So it's important for HR departments to take complaints from employees relating to chronic microaggressions seriously and not brush them off as overdramatic reactions to innocuous comments. Chandrasekera says that in Canada, 500,000 workers don't show up to work on any given day because of mental health issues. She contends that feeling continually diminished at work is a mental health issue.

Zhou adds that microaggressions affect "every facet of professional advancement, from hiring to promotion, and across industries."

But for many people, microaggressions aren't limited to the office - and despite being added to the Oxford English Dictionary in 2015, they certainly aren't new, either.

"I think awareness of these experiences never required this fairly academic term in order to exist in communities for which they are a daily reality," says Zhou.

"But in the process of defining what they are, individuals within these marginalised communities usually have reflexively understood their meaning," he adds. "Which is a clear indication that what we are defining is real."

--
Bryan Lufkin is BBC Capital's features writer. Follow him on Twitter @bryan_lufkin If you liked this story, sign up for the weekly bbc.com features newsletter called "If You Only Read 6 Things This Week". A handpicked selection of stories from BBC Future, Culture, Capital and Travel, delivered to your inbox every Friday.
To comment on this story or anything else you have seen on BBC Capital, please head over to our page or message us on .

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The tiny ways prejudice seeps into the workplace

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To a female CEO: "Can I speak with your boss?" To a man who's a nurse: "Wow, you don't see many male nurses." To an LGBTQ intern: "Huh, you don't sound gay." To a non-white colleague - in a mostly white office: "So, where are you from?

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How inequality threatens all human rights

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Inequality is not only a threat to economic and social rights-it threatens the realization of all forms of rights everywhere.

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Minister's 'insult to injury' snub to DPOs over social care round table

Government ministers are facing criticism after organising a "round table" event on the future of working-age social care without inviting any disabled people's organisations (DPOs) to attend.

The failure to invite DPOs emerged after the disabled crossbench peer Baroness [Jane] Campbell had asked the government to extend the scope of its green paper on older people's social care to include working-age disabled people with care needs.

The green paper was announced in November, but it frustrated campaigners when the government revealed that it would examine the care needs of older people, while "a parallel programme of work" would look at working-age disabled people.

Baroness Campbell told fellow peers this week that the "proposed parallel process" was "simply not acceptable when half of social care spending now goes on working-age disabled people", a concern she raised this week through the website PoliticsHome.

She said: "Please will the minister confirm that both older and younger disabled people will receive parity of status and attention from the government?"

But the junior health and social care minister Lord O'Shaughnessy said only that "a parallel programme of work is going on" and that the government was "giving the issue equal seriousness, as it deserves".

And he said that the care minister, Caroline Dinenage, would soon be co-chairing an "important" round table "with Mencap, Scope and others".

It was only when the Conservative peer Lord Cormack suggested that Baroness Campbell should be invited to join the round table that Lord O'Shaughnessy said he would "do everything that I can to encourage" Dinenage to invite her.

Baroness Campbell later said on Twitter: "Pleased my friend on the Conservative bench requested I get invited to the round table on the future of social care [but there will be] no DPO represented!!"

She told Disability News Service this morning (Thursday): "I am deeply worried about the lack of focus on younger disabled people in social care, so want to keep the pressure up on government to do something about this."

She said she was pleased that Lord Cormack had asked for her to be invited to join the round table.

She added: "If I do, I can then insist DPOs are centrally involved. We must demand the government do this now, at the start and not as an afterthought or placatory one-off round table."

Sue Bott, deputy chief executive of Disability Rights UK, said: "I am grateful to Baroness Campbell for asking the question which I think gets to the heart of what is wrong with the current debate, or should I say non-debate, about social care.

"It seems extraordinary that government should virtually ignore the group of people, younger disabled people, who account for 51 per cent of the annual spend on social care.

"It really is not an adequate response to say 'yes, but we are having a little roundtable' and to add insult to injury, not involve disabled people or our organisations.

"It suggests that for government it's just about the money: how much money can they get away with taking from older people and leave younger disabled people to keep paying for their social care from their benefits."

A Department of Health and Social Care (DHSC) spokeswoman refused to confirm that no DPO had been invited to the round table, or say when it was taking place, or even confirm if Baroness Campbell would now be added to the list of attendees.

But she said that the round table would discuss the priorities for the "parallel work stream on working age adults with care needs", which is being jointly led by DHSC and the Ministry of Housing, Communities and Local Government.

She said in a statement: "The government is currently developing plans for engaging stakeholders in the work on working age adults with care needs that is running in parallel to the social care green paper.

"We will ensure that the views of a range of people who use social care services, including adults with disabilities, closely informs this work as it progresses."

Labour's health spokeswoman in the Lords, Baroness Thornton, had told fellow peers during the short debate that she agreed with Baroness Campbell's concerns about working-age people.

She said that evidence of a social care crisis was in "the regression of opportunity and care for young disabled people, which is there to see in personal cases where people are not receiving the sort of support that they need".

She said: "Will the minister explain how the government will achieve their target of one million more disabled people being in work by 2027 if they cannot get out of bed and travel to work without help because of this combination of cuts and the stalling of a coherent support policy to make that possible?"

Lord O'Shaughnessy said more disabled people were finding work, while DHSC had increased spending on the disabled facilities grant.

He said: "That is about making sure that disabled people can live at home and have their independence, which of course is critical to maintaining their physical health and confidence to make them, in a way, ready to go into work."
News provided by John Pring at www.disabilitynewsservice.com

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Government ministers are facing criticism after organising a "round table" event on the future of working-age social care without inviting any disabled people's organisations (DPOs) to attend. The failure to invite DPOs emerged after the disabled crossbench peer Baroness Campbell had asked the government to extend the scope of its green paper on older people's social care to include working-age disabled people with care needs.

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The Scottish Budget was passed by the Scottish Parliament yesterday evening. So that's it over for another year. The chance of smaller political parties to get their pound of flesh from a minority administration has passed over the yard arm.

And what's it done for social care in Scotland? Well pathetically little.

Admittedly we got our £66million, which is amongst other things supposed to cover the increase in the Scottish Living Wage, the effect of changes on sleepovers, Free Personal Care increases and the start of the Carers Act. Mind you last year we had £100 million allocated for the Scottish Living Wage which had then just gone up by 20p- but it's amazing what £66million is going to stretch to given it's a 30p increase this year! That'll be one to watch!

But I don't want to just dwell on the Budget because no doubt I'll be back talking about the back of a fag packet economics of it all at a date in the not too distant future. What I want to talk about is that I'm scunnered and getting really quite angry at the whole charade.

I'm scunnered at what feels like standing in the middle of the public square with a begging bowl each year calling for extra funding for some of our most vulnerable watching out for a passing MSP who might hear the need for serious investment in care.

I'm scunnered at saying we need a dramatic serious investment - I called for a third of a billion in December and we got £66million and at the time I was made to feel as if I was dreaming of Utopia rather than the socially just and human-rights based country that I thought I was a citizen of.

I'm scunnered that there seems to be no real debate despite political rhetoric that admits that the sums are simply just not adding up - and that's a lesson in the arithmetic of austerity that people who are today grabbing 15 mins of rushed care rather than being treated with respect and dignity have learnt only too well.

But I'm also angry...

I'm angry at the wasted opportunity of having a grown up non-partisan political debate about what is the real and not the affordable cost of rights-based dignified social care and not the system we have at the moment where eligibility makes social care the preserve of the few and not the requirement of those who need it.

I'm angry that a week after the Kings Fund published a major report offering a range of proposals for the funding of public social care in England, no political party north of the Wall seems prepared to look beyond the next ballot box to think seriously about how we are going to pay for care into the future, what system will fit us and how we are to create equity rather than accidental access.

I'm angry that we seem to spend so much of our time hiding behind data to show that what we are doing is making an apparent difference to the health and care experience of our fellow Scots, and that we engage in a self-congratulatory back-slapping of what's going well. Let us hear the good news stories but let's not pretend everything in the garden is blooming!

And I'm angry that despite the rhetoric of prevention and self-management we are still dominated by the sacred cow of the NHS against whom no critique should be offered and are thus failing to address the fact that we need to transfer resources from the privileged few in that system to the majority in communities who experience inadequate social care provision.

So yes, the Budget may be over for another year but for goodness sake let's not be here next year arguing over scraps for a crumbling social care system where the word 'crisis' is already beginning to sound empty and hollow. Let's start to work together to transform the woefully inadequate funding and priority given to social care. And that means we all of us have to take charge and control and start talking up the critical importance of social care.

Social care should not just be for an election debate or a budget negotiation - it should be the central characteristic of the society we wish Scotland to be.

Dr Donald Macaskill

@DrDMacaskill

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