Jan 152019
 

Reblogued from @SpeyeJoe’s blog: No job? Kids? Then you’re homeless is Tory policy. Why don’t Shelter know this? https://speyejoe2.wordpress.com/2019/01/13/no-job-kids-then-youre-homeless-is-tory-policy-why-dont-shelter-know-this/

The Overall Benefit Cap policy which limits a household to £20,000 per year in ‘welfare’ and £384.62 per week will mean that in 2027 the two parent three child household will not get a penny in housing benefit.

Is it irony for the Shelter Commission report this week investigating social housing for the next 20 years has a picture of a mother and child on its cover and a lone parent with one child in 20 years will not be able to afford the cheapest council housing Shelter demand is needed due to the Tories Overall Benefit Cap policy?

This week the DWP announced that tax credits will be paid for the 3rd child (if born before 2017) and that welfare benefits will rise and be unfrozen and I assume they will rise by the CPI rate of inflation.

2p3c

The quick table above shows that in 2019 the two parent three child household (2P3C) gets £323.45 in ‘welfare’ plus a maximum of £61.17 in housing benefit.  The table then increases the £323.45 other welfare figure by 2.2%, the current CPI rate of inflation, each year and by 2027 this reaches the Overall Benefit Cap limit of £384.62 meaning the 2 parent 3 child household will not get a penny in housing benefit.

Where will they live?

Council and housing association landlords will not house them as they cannot pay the rent, they cannot afford the rent and what we have is the cheapest rented housing that will call social housing will see social landlords operating a blanket NO DSS policy as private landlords have done for decades.

Using the same method of welfare increasing by CPI in 2034 the lone parent with 3 child household will not get a penny in housing benefit and in 2038 the two parent 2 child household will not get a penny in housing benefit.

The Overall Benefit Cap (OBC) policy kills off the 1948 Welfare State housing safety net and directly creates ever-increasing homelessness with its systemic flaw that I first mentioned in 2012 of its cap or limit remaining a constant while ‘welfare’ and rents both increase.

The OBC means the social landlord model is dead as the proverbial Dodo as councils and HAs will not house those in housing need as they simply cannot afford to.  I cautioned social landlords at their euphoria over the return of inflation-busting rents from 2020 (CPI inflation plus a further 1%) that will also lead to NO DSS for their 400,000 social housing lets they have each year and of course for the mass eviction of existing tenants that the combination of welfare and rent rises will create as an unambiguous inevitability.

NO JOB NO HOME as well as NO DSS becomes the norm for council and housing association landlords

Look at the following table for the lone parent 2 child household which uses the same method of welfare rises of (2.2%) CPI inflation and social housing rent rises of 3.2% and CPI plus 1%

1p2c

By 2027 the lone parent with 2 children will get a maximum housing benefit of £129.33 and the rent will be £131.99 and a shortfall arises of £2.66 per week.  Yet 2 years after that in 2029 this housing benefit shortfall has increased to £22.60 per week and in a further two years by 2031 doubles to £43.60 per week … which means that councils and housing associations in the cheapest rent areas of the UK cannot afford the ‘benefit tenant’ with 2 children. It means the eviction of existing lone parent two child households and denies the allocation of social housing to them (NO DSS)

It further means that council and housing association landlords can ONLY house those in work for the near 40% of all social housing that is 3 bedrooms or larger.  The benefit tenant ghetto is what council and housing association housing becomes. It also means any household with two children cannot live anywhere if they have no job. It means NO JOB NO HOME.

This past week has also seen the Shelter Commission Report that calls for 3.1 million social housing properties to be built over the next 20 years or 155,000 new houses described as ‘genuinely affordable’ and meaning houses are social rent.  Yet what is the point if none of those allegedly ‘genuinely affordable’ houses will not be allocated to the benefit households or those most in housing need due to the OBC and inflation-busting social rent rises?

The OBC policy means NO JOB NO HOME and means NO DSS in even the cheapest rented properties of council and housing association landlords.

The Shelter Commission report claims to look at housing until 2039 yet by that time the lone parent with 1 child household will have a housing benefit shortfall of £35.63 per week in the cheapest form of social housing.  Hence by 2039 at the latest council and housing association landlords will not house any benefit tenant household who has children!!

Remarkably the OBC policy has an approval rating of over 70% and just as offensively the last Labour Party general election manifesto called for a reduction in the OBC limit – both of which show that the electorate and all politicians don’t have a clue about the OBC policy and what it inevitably means which is I remind again NO JOB NO HOME and NO DSS being the norm and the eradication of the 1948 Welfare State.

The Tory OBC policy not only has the cap as a constant figure and with it the systemic flaw but in 2017 the Tories reduced the cap by 23% from £26,000 per household per year to £20,000 per household per year (and to £23k pa in London.)

The Shelter Commission did not mention the OBC policy and did not consider it in their report despite the fact it will systemic create ever-increasing homelessness and NO DSS in the cheapest rented housing that we misname social housing.  Excuse me reader but isn’t Shelter’s rationale to fight homelessness and yet they do not even see the inevitable OBC impact of mass homelessness and mass social housing NO DSS!!

Note well that figures unlike politicians, lobby groups and social landlords DON’T LIE and when the creation of those figures is THE most basic of basic spreadsheets that a 7 year-old can do then why the hell can’t politicians, landlords and the likes of the Shelter Commission take 2 minutes to create such as simple spreadsheet?

All of these actors claim to care about homelessness yet they do not know their arse from their elbow when it comes to the systemic creation of ever-increasing homelessness do they?

 Posted by at 22:54
Jan 132019
 

NHS Plan Unfit! No to cuts, rationing and privatisation.

Signup at the Facebook Event Page

Thursday 31 January. 10:00am to 1:00pm
RALLY OUTSIDE NHS ENGLAND BOARD MEETING
Skipton House, 80 London Road Elephant and Castle, London SE1 6LH.

Please come and join fellow KONP supporters in protesting the government’s NHS long term plan. Called by National KONP and Lambeth Keep Our NHS Public.

All of the main lines of what has been published or leaked about the Plan are a depressing re-run of previous plans and gimmicks: the only novel proposals are for more central control and less accountability, for trusts to run more like and with private businesses seeking profits, and to raise money by undermining the principles and values of the NHS through charging overseas visitors – a government policy widely condemned by NHS professional staff and campaigners as discriminatory and a step backwards from prevention and public health. There is no reason to believe this plan, with even less local accountability and no serious plans for public consultation, will prove any more acceptable to the public or successful in implementation than the secretive STPs in 2016 or other previous failed efforts. Campaigners have yet to see anything to recommend the new plans, or any indication NHS England is willing to come to grips with the crisis fuelled by chronic austerity limits on funding – or demand an end to chaos and fragmentation of the Health & Social Care Act.

Join the rally and bring your friends!

 Posted by at 16:26
Jan 102019
 

Home Office’s ‘inhumane’ deportation decision poses ‘risk to life’

Autistic rights campaigners are calling on the government to reverse its “inhumane” decision to ignore detailed, independent medical evidence and force a young disabled man with high support needs and his family to return to India.

Disabled activists from Autistic UK say the medical evidence proves that Gopul Anand is not well enough to make the journey and that the UK government’s attempt to deport him and his family is a “grave breach” of the European Convention on Human Rights.

Gopul is autistic, and also has schizophrenia, epilepsy and learning difficulties, and his family insist – backed up by evidence from experts including social workers and his mental health team – that he is too ill to travel because of the risk both to his own health and the safety of other passengers.

British Airways has even told the family that it would not allow 24-year-old Gopul to fly with the airline because of his current poor health.

Errol Kerr, chair of Autistic UK, said the Home Office’s “lack of consideration” for Gopul’s situation was “horrifying” and suggested “a wider attitude towards disabled people and immigrants”.

Gopul’s father Shekhar, a social and economic development expert, who has worked with Oxfam for 15 years in Africa, Asia and the UK, has told the UK government that his family accepts its decision that they must return to India, but is pleading for time for his son’s health to improve.

Shekhar originally came to the UK with his family seven years ago for a senior position in Oxfam’s Oxford office.

Gopul had been educated in a mainstream school in India, but his mental health deteriorated sharply following the death of an uncle in 2013.

His parents tried to take him on a flight to India that year to visit family, but he was too unwell to travel.

His health dramatically deteriorated even further the following year, and he was eventually sectioned and spent time in an assessment and treatment unit (ATU) in 2015.

Gopul spent 10 months in the ATU, and his family had to appeal to a tribunal to have him released. He still has nightmares and flashbacks because of the abuse he experienced at the hands of a member of staff at the unit.

He is also self-harming and experiencing hallucinations and panic attacks, and is currently so unwell that it is almost impossible for him to leave the family home in Cowley, Oxford, to attend events where he might interact with strangers.

Two years ago, Shekhar’s visa expired, and he and the family have now submitted detailed, independent evidence to the government that shows why Gopul is not well enough to travel back to India.

One of Gopul’s support workers has described how his condition has deteriorated in the last year and said that taking him to India would be “practically impossible and very risky for Gopul, family and any members of the public present during the journey by any means of transport” and that escorting him would be “unsafe and dangerous”.

The move to India, she said, could cause “irreversible damage” to his mental health.

His mental health team agrees and says his condition has deteriorated in the last 12 months, with an increase in his impulsive behaviours, and that he has become increasingly unsettled, aggressive and violent.

They say it would cause him “extreme anxiety” to travel to India and that he would be a threat to himself and other passengers.

Shekhar said: “The risk is that he will get into severe depression and he will not be able to come out of it. There is a risk to his life.”

As well as the risks to his health from the anxiety caused by the flight itself, and the lack of family support in India, Shekhar is also concerned about attitudes in India to autistic people and those with mental distress, and the lack of services to support autistic people and treat Gopul’s mental ill-health.

He said: “The social acceptance is not there. If he goes out by himself maybe some people could throw stones at him and kill him.”

Shekhar said there was a “social taboo” in India about mental health which would prevent Gopul being accepted.

He also pointed out that there is a global average of 3.96 psychiatrists per 100,000 people, whereas in India this figure is just 0.301.

He said: “Gopul will neither feel safe nor get the same level of services as he is getting in the UK. 

We are really, really worried. It is a dire situation. It is a risk to his life.”

A tribunal ruled last February that the Anands would have to leave the UK, and they were refused permission to appeal in September.

Shekhar then approached Gopul’s doctors for a medical review and they concluded that he was not well enough to travel.

The family’s solicitor told the UK Visas and Immigration (UKVI) service in a letter in November that it had made “arbitrary and hollow statements” in response to the detailed and independent medical evidence provided by the family, and did not understand why UKVI could not consider this as evidence to justify discretionary leave to remain in the UK.

The letter added: “Our client and his disabled dependant are left in a limbo being crushed between medical opinion and the UKVI policy.”

The Home Office has now told the family that it will not reconsider its decision, despite the concerns over Gopul’s health, but that they can lodge a fresh application to seek discretionary leave to remain in the UK.

This new application will cost them about £10,000 in legal fees and costs. The family have already spent nearly £20,000 in applying for leave to remain in the UK, and say they have wasted two years waiting for a decision on their application.

Because of the government’s refusal to extend their visas, Shekhar’s wife Anima has been forced to turn down a job offer.

His other son, Atul, who has been paying international rate fees for the last three years, has had to interrupt his computer science degree at the University of Bath and will need to return to India and then apply for a student visa so he can continue his studies.

Autistic UK, which is run and controlled by autistic people and has supported the campaign to persuade the government to change its position, said the Home Office appeared to consider “invisible” impairments such as autism and mental distress as “ineligible” in deciding whether there should be a medical exemption in such cases, which “is plainly discrimination”.

Errol Kerr said: “The lack of consideration the Home Office have for the situation Gopul is in is horrifying.

However, it is not an isolated one. Instead it is indicative of a wider attitude towards disabled people and immigrants held by the Home Office itself.

Whether this is due to wilful ignorance or a lack of understanding matters little – Autistic UK are deeply hurt that the very real needs of a multiply disabled individual are being ignored and we feel we have no choice than to stand with Gopul and his family, and show our support to those whose lives are similarly undermined.”

The Anand family have been supported by their MP, Labour’s Anneliese Dodds, who has called on the Home Office to re-open the case because of the new medical evidence that has emerged since the tribunal decision.

They have also launched an online petition in the hope of putting further pressure on the Home Office to reconsider its decision.

Shekhar said: “We are just asking for the Home Office to give us some more time, maybe six or eight months or a year.

The moment the doctors say he is fit for travel, we will be able to take him back to Delhi.”

A series of Home Office spokespeople repeatedly promised that the department would release a statement about the case, but it had not done so by noon today (Thursday).

10 January 2019

 

 

ROFA lays out plans to make the right to independent living a reality

Campaigning disabled people’s organisations (DPOs) have set out their demands for a new national independent living service that would eliminate the postcode lottery in support, and finally make the right to independent living a reality.

The Independent Living for the Future document has been developed over the last 14 months under the banner of the Reclaiming Our Futures Alliance (ROFA), whose members include Disabled People Against Cuts, Inclusion London, People First (Self Advocacy), Greater Manchester Coalition of Disabled People, The Alliance for Inclusive Education and Shaping Our Lives.

ROFA will now seek support for the document from its members, political parties, disabled people, DPOs and other organisations.

Independent Living for the Future is based on principles laid out in the UN Convention on the Rights of Persons with Disabilities.

Article 19 of the convention describes how countries signed up to the convention – like the UK – must recognise the right of all disabled people “to live in the community, with choices equal to others”.

The new document describes how the rights in article 19 could be upheld through a new national independent living service, which would build on “what was most successful” about the former Independent Living Fund.

The new service would be “co-created between government and disabled people, funded through general taxation, managed by central government, led by disabled people, and delivered locally in co-production with disabled people”, says the document.

It would be free, non-means-tested and “provided on the basis of need, not profit”.

There would also be funding for DPOs to deliver local services, ensuring a range of options to support disabled people to live in the community and exercise choice and control over their support.

Priorities would include setting up a new independent living taskforce, led by disabled people, to develop plans for the service; and agreeing how to introduce a legal right to independent living, including an independent living bill of rights.

There would also be a need, says the new document, to educate the public about the benefits of investing in independent living support for disabled people.

The document also calls for the government’s Office for Disability Issues to be moved out of the Department for Work and Pensions and placed within either the Cabinet Office or the Government Equalities Office.

And it says there should be a strategy for investment in local user-led services alongside the closure of institutionalised, segregated settings including long-stay hospitals and assessment and treatment units.

The document points out that government austerity cuts have had “serious adverse impacts” on the rights contained in article 19, with the social care and mental health systems in crisis and disabled people’s rights being taken “dramatically backwards”.

It says that grassroots campaigning by disabled people since 2010 has focused heavily on the right to independent living, partly because activists are so proud of the independent living movement and its achievements.

It adds: “At a time when discrimination continues to exist legally, structurally and within many parts of society, daily living conditions are deteriorating and the odds against us seem overwhelming, it is enormously important to be able to draw on a source of pride that sits at the core of our shared identity.”

The ideas behind the document began to be discussed several years ago with disabled activists involved in the campaign set up in 2011 to stop the planned closure of the Independent Living Fund.

More recently, there have been discussions at the National Disabled People’s Summit in November 2017, the Independent Living Campaign Conference later that month, and a ROFA round table event last May.

10 January 2019

 

 

Motability set to spend millions more on grants for adapted vehicles

The Motability car scheme is set to increase substantially the number of grants it makes to disabled people with high support needs that allow them to lease an adapted vehicle, MPs have been told.

The move would be a success for disabled campaigners who have long called for Motability to use more of its substantial resources to fund expensive, heavily-adapted vehicles for disabled people who would otherwise be unable to engage in their community.

Lord Sterling, the co-founder of the scheme and chair of the Motability charity, made the pledge to increase the number of grants during a joint evidence session held yesterday (Wednesday) by the Commons Treasury and work and pensions committees.

The committees are holding a fresh inquiry, following a critical report last month by the National Audit Office (NAO) which raised significant concerns about Motability Operations, the company which runs the scheme on behalf of the charity*.

Only disabled people receiving the higher mobility rates of disability living allowance (DLA) or personal independence payment (PIP) – or similar payments for former members of the armed services – are eligible to join the scheme.

The evidence session saw MPs raise concerns about the level of financial reserves held by Motability Operations, high rates of executive pay at the company, and a lack of transparency by its chair, Neil Johnson, as well as the “cosy” relationship between the charity and the company.

Another key issue was what the charity would do with £400 million in donations handed to it by Motability Operations, with the expectation of a further and continuing £100 million a year, as a result of profits that were more than £1 billion higher than forecasted between 2007-08 and 2016-17.

Labour’s John Mann, a member of the Treasury committee, said there was a disabled young woman who lived in a rural area of his Bassetlaw constituency and had been refused a grant for an adapted vehicle which she needed to drive to her first job.

He questioned why such grants were being rejected when Motability Operations held £2.62 billion in reserves in March 2018 and was paying its executives such large salaries and bonuses (in 2016-17, the company’s chief executive Mike Betts received a total financial package of £1.7 million).

Lord Sterling told the MPs that the charity knew there was unfulfilled demand for grants to adapt vehicles for disabled people with high support needs.

He said: “We know there’s a much bigger demand… we want to do many more of these cars for the more severely disabled.”

But he admitted that the charity did not yet have a long-term strategy for spending the new funds donated by Motability Operations, although he said the money would all be spent “over a period”.

Paul Atkinson, the charity’s new chief executive, said the cost of a wheelchair-accessible vehicle can be up to £60,000, with the charity currently making £23 million in grants every year for about 8,500 people to lease adapted vehicles [many of these grants are for less expensive wheelchair-accessible vehicles].

He said: “What this donation will allow us to do for an awful long time into the future… is increase the number of people who are able to receive those grants.”

He was also asked whether some of the new money could be spent on allowing disabled people to keep their Motability vehicles until the end of their three-year lease period if they lose entitlement to PIP or DLA during that time, as tens of thousands have done since the introduction of PIP by the coalition government in 2013.

Although Atkinson did not appear to answer this question, he did say that the charity already considered such requests on a case-by-case basis.

He said the charity was about to launch an extensive consultation process to ask how it should spend the extra funds donated by Motability Operations; there will also be a review of the level of reserves being kept by the company.

The session saw representatives of both Motability Operations and the charity answering critical questions from MPs on the two committees.

While praising the way the scheme was run and the service it provided to disabled people, Frank Field, the Labour chair of the work and pensions committee, questioned whether it was “value for money” and whether it could be provided for lower payments for disabled customers.

Sir Amyas Morse, the head of the National Audit Office, said this was possible, but he added: “We are talking about a success. And it’s very seductive to start picking a success to pieces.”

He said it was “reasonable” to challenge Motability Operations to reduce the “substantial” level of “over-profits” and “deliver a leaner operation”.

And he said the committees were right to be concerned about the levels of executive pay at the company.

He also said the government needed to take a “much more active part in shaping the future” of Motability Operations and then “guiding that future forward”, while there was a need for a “much more muscular” model of governing the company.

He said: “These issues aren’t going to go away without significant change in the way this is operating. It’s valuable, it’s a success, but there does need to be change.”

In response to one MP, Lord Stirling was forced to admit that there were currently no black and minority ethnic governors on the charity’s board, and only one woman.

Nicky Morgan, the Tory chair of the Treasury committee, also asked why the charity had not once since 2013 sent one of its governors to attend the Motability Operations committee that is responsible for setting levels of executive pay, even though the charity had sent letters expressing concern about the issue in both 2012 and 2016.

She said: “The difficulty is that everything I’m hearing so far is there has been a very long-term cosy relationship between the charity and the company.

I think over the years you have done amazing work, but you have forgotten this is an arms-length relationship.”

Lord Sterling told her: “With hindsight, maybe one should have made sure someone should have attended it.”

MPs also asked about the company’s earlier failure to disclose nearly £2million in bonuses that were due to be paid to Betts by 2022.

Mann, a long-standing critic of Motability Operations, accused Neil Johnson, chair of the company, of hiding the full value of the incentive scheme.

He said: “You’re a monopoly underpinned by the taxpayer and I’m asking a simple question: why were you hiding that amount of money?”

The Conservative MP Charlie Elphicke, another Treasury committee member, said Johnson’s evidence had been “evasive” and that there had been “a lack of openness, a lack of transparency, a lot of defensiveness”.

He suggested that, even if Motability Operations had not breached the “letter” of the Companies Act over details of the incentive scheme, it had breached it in “spirit”, and added: “‘The spirit matters too. You’re all City figures.

The spirit matters as much as the letter. Being evasive and that kind of behaviour is not right.”

Johnson insisted that there was “no intention to cover [up] anything” and that Motability Operations had acted in line with best practice, but that it recognised that “there could be more openness” and had now taken steps to ensure that happened.

Asked about the level of reserves, Johnson said: “This is not a leasing company like any other leasing company.

If another leasing company has insufficient reserves and goes to the wall then its customers can go somewhere else. Our customers can’t. That’s why we need to have sufficient reserves in place.”

But Field said the government and MPs would never allow it to fail.

*The Motability charity is one of Disability News Service’s subscribers

10 January 2019

 

 

Rudd has not delayed roll out of universal credit, DWP confirms

The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed.

Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a significant overhaul and planned to delay the process of moving about three million claimants of existing “legacy” benefits, including hundreds of thousands of people on employment and support allowance (ESA), onto universal credit.

Some commentators and politicians subsequently praised Rudd for listening to critics of the new regime, which has been blamed for driving many claimants into poverty.

But DWP confirmed this week that the timetable had not changed, and that the “managed migration” of those on legacy benefits like ESA and income support onto universal credit would begin in July with a small pilot programme of about 10,000 claimants, as previously announced.

Next year, DWP will begin migrating the remaining three million of those on legacy benefits, with the aim of completing the roll out by the end of 2023.

All that has changed is that, instead of seeking parliamentary approval for regulations that would allow the entire managed migration process to be given the go-ahead, ministers will first ask MPs to approve only regulations covering the pilot scheme.

They will then come back to parliament at a later stage for approval of regulations covering the rest of the managed migration process.

A DWP spokesperson told Disability News Service this week: “There is no change to the roll out timetable.

We will begin migration this year with a maximum of 10,000 people to make sure the system is working well for claimants and to make any necessary adaptions as we go.

We are clear this will have no impact on our timelines for universal credit to be fully rolled out by 2023.”

Rudd told MPs this week during the first work and pensions questions of 2019 that she was still considering when to ask MPs to vote on the main migration of the three million claimants.

She also confirmed that there were already 1.4 million people on universal credit, with another 1.6 million expected to move on to it during the next 12 months as part of so-called “natural migration”, through new claims by people not already on legacy benefits and from those moved onto universal credit because of a change in their circumstances, such as moving to a new home.

She said she would take on board a suggestion from Labour MP Ruth George that DWP should publish a “conclusive list of all the reasons for people having a change of circumstances and being moved on to universal credit”.

DNS has been trying since last January, through freedom of information requests, to persuade DWP to release such a list, and other information about the universal credit reforms.

Later in work and pensions questions, the shadow minister for disabled people, Labour’s Marsha de Cordova, was scathing about DWP’s decision to launch a seventh review of disabled people who had been wrongly denied social security payments, as revealed by DNS last week.

She said it was “yet another example of the devastating impact of the chaotic shambles at the heart of the DWP”.

And she asked Sarah Newton, the minister for disabled people, if the latest review was “the result of institutional indifference to the suffering of disabled people” or simply “the result of a department in utter chaos”.

Newton told de Cordova that she would “not even dignify those comments by repeating the allegations”.

She said: “We are utterly determined to make sure we have a benefits system that is compassionate, fair and fit for purpose.

We are proceeding at pace to review the PIP claimant cases to make sure that people get all the benefits to which they are entitled.”

But Newton was also told, by fellow Tory MP Maria Caulfield, of a constituent with cystic fibrosis who has “lung function of less than 30 per cent” but has lost his entitlement to personal independence payment and now faces a 47-week wait for a tribunal to hear his appeal.

Newton told her: “Many more people are benefiting from PIP than they were under the legacy system, but one mistake is one too many and I will of course work with her.”

10 January 2019

 

 

Nine journeys in one day expose ‘sham’ of National Express ‘accessible’ coaches

A disabled campaigner who took nine journeys on the same day to check the accessibility of the services provided by the UK’s largest coach operator experienced signifcant problems on all but one of them.

Wheelchair-user Doug Paulley had booked assistance in advance for services between Leeds and Bradford provided by National Express.

But all but one of last week’s nine journeys threw up serious problems, with malfunctioning lifts, drivers who did not know how to deal with the equipment, or staff failing to clamp Paulley’s wheelchair in place correctly and safely.

He caught all the day’s journeys on video and edited them into a 20-minute package of the worst moments.

The first journey saw him stuck in mid-air on the lift that was loading him and his wheelchair into the coach, with staff making repeated attempts to make the equipment work, and the equipment malfunctioning again at the end of the trip.

There were problems with the seatbelt on the second journey, but the third journey was problem-free.

After this third trip, he began taking pictures of the way his chair was being clamped, and found that not once on the remaining journeys was he restrained safely and correctly.

The fourth trip again saw the lift jamming, while the driver on the fifth journey had to repeatedly enter and reverse out of the bay because the ramp would not open properly.

When the ramp finally opened, the lift jammed.

On the sixth journey, the wheelchair was not clamped correctly, and on the seventh a member of staff reported problems with the “ratchets” that attach the wheelchair to the floor of the coach.

The next coach driver had problems clamping the wheelchair to the coach, while Paulley’s final journey saw the coach parked so close to the railings that it was difficult for him to access the ramp, while his wheelchair was again not clamped safely.

Last year, an investigation by Paulley showed that National Express was ignoring access laws by refusing to allow wheelchair-users to travel on its services on the same day they bought tickets.

Any coaches that have been adapted to be compliant with Public Service Vehicle Accessibility Regulations – as all of National Express’s have – must provide a wheelchair space and make that space available to wheelchair-users.

All companies operating scheduled services must ensure they are accessible by 1 January 2020, so other companies have less than a year to meet the necessary standards.

This time, Paulley booked his coach tickets in advance, and managed to make nine trips between Leeds and Bradford in different coaches in one day.

And he says his experiment shows that even those companies, like National Express, that are already running “wheelchair-accessible” services are actually offering an “unusable” system.

This means wheelchair-users do not even try to use the service, he said, so the equipment is never used.

Paulley said: “So when somebody like me comes along and bucks the trend by having the audacity to dare to attempt to use this system which everybody else takes for granted, it all falls apart spectacularly.

The sham is exposed as being a tick-box exercise of going through the motions of meeting the legislation, but nobody actually checks that it works and it isn’t actually usable.

Which is utterly shameful.”

Alan Benson, chair of Transport for All (TfA), the user-led organisation that campaigns on accessible transport in London, said Paulley’s experiences were “very disturbing and upsetting for Doug” but not a surprise to TfA.

He said: “Watching this experience is enough to put any disabled people off travelling by coach. This is unacceptable.

Clearly the equipment doesn’t work as it should and significantly the staff training wasn’t up to scratch even though the operator provided more support than would usually be available.

With rising train fares coach travel is seen by many as a more affordable alternative but based on this experience disabled people will be seriously considering whether this is a realistic or sensible alternative for them.”

A National Express spokesperson refused to say if the company was concerned about what it had seen in Paulley’s video.

But she said in a statement: “We take our commitment to accessible travel very seriously and always endeavour to facilitate travel on our coaches for any passengers requiring assistance, which includes wheelchair users.  

Customer feedback is key to our continual learning and informing any business decisions regarding our policy and procedures.

We are in direct discussions with Mr Paulley to respond in detail regarding his travel with us on 30 December 2018.

10 January 2019

 

 

Disabled designer wins $500,000 to develop first intelligent manual wheelchair

A disabled entrepreneur and product designer is set to develop a revolutionary prototype of the world’s first “intelligent” manual wheelchair, after winning half a million dollars in funding through a global competition.

Andrew Slorance, whose start-up company Phoenix Instinct is based in Forres, Moray, in the north of Scotland, was this week announced as one of five finalists in the worldwide Mobility Unlimited Challenge (MUC).

Slorance hopes to produce something that has “never been done before”: an ultra-lightweight wheelchair that uses artificial intelligence to create an “intelligent” centre of gravity, providing a chair that is both stable and easy to self-propel.

The wheelchair will also have intelligent, electronic braking so the user will not need to grab the tyres to slow down on steep slopes.

Slorance told Disability News Service (DNS) this week: “I genuinely think it would be a revolution of the wheelchair.

It’s a huge responsibility to wheelchair-users because the wheelchair has stayed as it has been for the last five years with very little innovation.

The wheelchair companies themselves, it doesn’t look like they are going to do anything like this. They’re going to carry on dishing out the same stuff.

And here we have the chance to move the posts and show them and wheelchair-users the wheelchair can be a lot better.”

The problem with lightweight wheelchairs, he says, is that even if they are easy to lift, the amount of weight on the small front wheels can make them difficult to push because the centre of gravity is too far forward.

But if you move the centre of gravity – the axle position – further back it becomes “very tippy and prone to falling backwards”.

What he will do with his new wheelchair – known currently as the Phoenix AI – is to use artificial intelligence and sensors that allow the wheelchair to adjust its own centre of gravity according to what the wheelchair-user is doing.

So it will always be very light to push because all of the weight will be going through the back wheels,” he says, “but it will be smart enough to keep the wheelchair stable, so any time the wheelchair looks like it may be prone to falling backwards, the system will kick in and correct it so that can’t happen.”

This, says Slorance, has never been done before.

The centre of gravity is the number one cause of accidents for wheelchair-users, he says, while the problems linked to the need to make the chair stable make it harder to push, create a lot of vibrations through the front wheels, and cause muscle spasms and other discomfort.

The new chair will also have intelligent, electronic braking, so it will automatically slow down to a pre-programmed speed when on a slope.

Wheelchairs don’t have brakes,” he says. “They have parking brakes, so when you get in and out of a wheelchair you can keep it in one place, but when you’re going down a steep slope in rain you’ve just got your hands.

Imagine saying to a cyclist, ‘Here’s your new bike, it doesn’t have any brakes, just grab hold of the tyre if you want to slow down.’”

All five of the MUC finalists will receive $500,000 to develop prototypes of their designs, with one of them set to receive another $1,000,000 when the winner of the challenge is announced in Tokyo in September 2020.

The Toyota Mobility Foundation launched the $4 million global competition in 2017 in partnership with the UK charity Nesta’s Challenge Prize Centre, with the aim of improving the mobility and independence of millions of people with lower-limb paralysis.‏

Four of the finalists, including Slorance and Phoenix Instinct, have already benefited from $50,000 MUC grants to help them develop their ideas.

Now he and the other four finalists have 18 months to produce a prototype to show to the judges.

He says he and his team have a “massive task” ahead of them.

They have proved that they can electronically adjust the centre of gravity through censors, so when the user moves their body position around on the wheelchair the centre of gravity will adjust itself – in a similar way that the Segway device keeps itself upright – but they still need to create an ultra-light wheelchair that remains “super-duper light” even after the electronics have been added.

He believes that such a product would be a revolutionary development of the wheelchair.

Slorance believes that his team should be able to get their wheelchair to market within three years.

If they do, he believes that smart wheelchairs will be commonplace within five years, just as mobile phones, fridges, and cars are increasingly becoming smart through their use of artificial intelligence.

Soon, he says, “people will be driving in driverless cars, they will be taking them home, the car will be telling the oven to turn itself on, while the fridge is ordering some shopping, but the wheelchair, the thing the person most needs more than anything else in life, will be this standard product that existed 35 years ago.

He says: “I don’t think it will stay like that. I think that making smart chairs is the natural progression and I think we are the people to get the ball rolling on that.”

Innovation in the wheelchair market has been slow so far, he says, partly because it is a niche market, but also because the companies that design wheelchairs are mechanical engineers, they are not electronic or software engineers and so do not have the expensive expertise they need at hand.

He believes this could change, if smart wheelchairs become the norm, and the big electronics and automotive companies join the market, ratcheting up the speed of innovation.

It could be, he says, “a very exciting time for people like myself as an innovator but also as a wheelchair-user”.

Slorance himself already has a strong track record of innovation in wheelchair design, after conceiving and designing the Carbon Black wheelchair, which is made almost entirely from carbon fibre.

He has wanted to design wheelchairs almost from the moment be broke his back when he was 14 and was presented by an occupational therapist with an “horrific” NHS wheelchair, and thought to himself: “Wheelchairs have to be better than this.”

He built a career in television, editing video for Channel 4 News and Sky News, but gave it up to design the wheelchair that would become the Carbon Black, driven by this belief that “wheelchairs could be better” and the feeling that he was “creatively starved” in journalism where the news is “here today and gone tomorrow”.

It was not quite as big a leap as it sounds, he says, because wheelchair-users have to problem-solve every day, but there was still a “long learning journey” ahead of him, on carbon fibre manufacturing, entrepreneurship, and finding the right people in computer-aided design “who would actually create the design that was in my head”.

The Carbon Black wheelchair that resulted from this journey was critically-acclaimed and was even exhibited at the Design Museum in 2012 after coming runner-up to the Olympic torch in the Designs of the Year competition.

But after he was forced out of his own company by investors he had brought on board – a “very tough thing to go through”, he says – he had to start all over again, which he did by starting up a new firm.

The name of his new company – Phoenix Instinct, which sells ultra-manoeuvrable luggage that can be towed by wheelchairs, which he designed himself after launching a Kickstarter fundraising campaign – has a double-meaning.

He says: “Every wheelchair-user customer that we have at the moment has Phoenix Instinct – they have the ability to get up every day and overcome the adversity that’s tried so hard to beat them.

But also for me, I have Phoenix Instinct as an entrepreneur, regardless of what happened to me at Carbon Black. Carbon Black is just part of my story.”

The other four MUC finalists – two from the US, one from Japan and one from Italy, whittled down from 80 entries spanning 28 countries – will also each benefit from $500,000 development funding over the next 18 months.

The Evowalk is ‏a smart, wearable leg sleeve that would help people with partial lower limb paralysis regain their mobility; the Moby is an integrated network of wheel-on electric devices that would allow users of manual wheelchairs the benefits of a powered chair through the equivalent of a cycle share scheme; the Qolo is a lightweight, mobile exoskeleton on wheels, which would allow users to sit or stand; and the Quix is a robotic, powered exoskeleton with motors at the hips, knees and ankles, which aims to offer someone with lower-limb paralysis “fast, stable, and agile upright mobility”. ‏

Ryan Klem‏, director of programs for Toyota Mobility Foundation, said: “These five finalists have shown real innovation driven by human-centered design.

We think that the technology incorporated in these devices could change the lives of a huge number of people around the world, not just for people with lower-limb paralysis, but also those with a wider range of mobility needs.”

Charlotte Macken, of Nesta’s Challenge Prize Centre, said: “Current personal mobility devices are often unable to fully meet the needs of users due to limitations affecting functionality and usability.

Historically, the pace of innovation is slow, due to small and fragmented markets and difficulties in getting new technology funded by health-care systems and insurers.

This can make the field unattractive to the very people who could help change the world.

We hope that challenges like this can inspire innovation and are excited to see how the five finalists use this opportunity to develop their ideas further.”‏

Meanwhile, Slorance says he can see a time when smart wheelchairs are all part of a connected network and are able to communicate with each other.

This could mean, if he wanted to travel from Covent Garden to Hyde Park in London, that his wheelchair would be able to ask other wheelchairs in the network how it could do this in an accessible way, whether there were any slopes on the route, and what the road surface was like.

My chair will be able to network with other wheelchairs that have done that journey,” he says, “and tell me exactly where I need to go, and what accessible places there are en route.

I think there’s a whole new world that can open up with the smart technology in wheelchairs.”

He says this could eventually see wheelchair-users with an advantage over non-wheelchair-users, something that has already happened in athletics with competitors with running blades, where, he says, “someone with carbon fibre legs can actually have an advantage over someone running on natural legs”.

A couple of years ago, he was in his wheelchair on an Edinburgh street and his front wheel caught a paving slab that was sticking up.

I fell flat on my face,” says Slorance. “I scarred my nose quite badly, I broke it. There was nothing I could do.

I think as we move forward, we will see intelligent systems implemented in wheelchairs that would have detected that paving slab sticking up and would automatically turn the chair a different way or sounded some sort of alarm long before I would have known it was there.

In that sense, unless you’re going to wear shoes that have sensors that tell you there’s a paving slab sticking up, then, yes, maybe the wheelchair-user might be at an advantage.”

10 January 2019

 

 

Company praised for ‘first accessible parking bay for charging electric vehicles’

Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles.

Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to use the space in the new NCP car park in Stanley Street, Salford.

The idea came following a suggestion from disabled campaigner Helen Dolphin, and Libbie Bilyard, co-founders of the People’s Parking scheme.

Dolphin, an independent mobility consultant and herself a disabled driver, came up with the idea when looking at how to make improvements to their car park accreditation scheme, which already judges services on their provision of electric charging points.

She said: “I am only too aware of the increasing growth of electric vehicles and although I don’t have an electric vehicle myself, I knew that as a disabled person I would struggle to get out of my car in a standard sized bay.

I therefore wanted to encourage car park operators to consider the needs of electric vehicle owners who are disabled and I’m absolutely delighted that NCP have installed a dual bay in their new car park.”

The scheme aims to improve car parks by highlighting those with facilities for disabled people, parents, commuters, cyclists and motorcyclists, and for electric and wheelchair-accessible vehicles, and those that can show they have good signage and pedestrian routes, are well-lit, clean and well-managed. 

Sean Fenney, NCP’s head of operations for Manchester, said: “Normally we have to work within the limitations of the estate that we currently have, so when we have a new-build car park it’s always a great opportunity to be able to make the space really work for all our customers.

We were really pleased to be able to add our first dual electric charging bay for our disabled customers, as we expect that to be a very real need in the near future.”

The Department for Transport (DfT) welcomed the move by NCP.

A DfT spokesperson said: “We welcome measures that support the use of electric vehicles and are committed to ensuring that everyone in our society enjoys the same opportunities to travel.

Our Road to Zero strategy, combined with £1.5 billion of investment in ultra-low emission vehicles, sets out a clear path for Britain to be a world leader in the zero emission revolution.”

Motability currently offers three electric models to lease through the disabled people’s vehicle scheme, with 202 customers with electric vehicles at the end of December.

A Motability spokesperson said: “The Motability scheme is currently in discussions with a number of other manufacturers to be able to supply full battery electric vehicles on the scheme in the future.

Motability supports initiatives, such as People’s Parking, in helping to improve facilities for disabled people.”

10 January 2019

 

News provided by John Pring at www.disabilitynewsservice.com

 Posted by at 14:31
Jan 082019
 

Reclaiming Our Futures Alliance logo

Independent Living for the Future

Foreword

So long as we live under a system that puts profit before people, we will need to struggle to secure the resources required to support Disabled people to access the same rights and opportunities as non-Disabled people. That struggle will take different forms at different times depending upon the attacks we find ourselves facing and the reforms we consider most urgently needed under particular circumstances. Throughout, it is important that we do not lose sight of the bigger picture that we are fighting for, of a society where each person is valued for their diverse, personal worth rather than their ability to labour and produce profit, and where each person is able to truly fulfil their diverse, personal potential.

As desperate as times currently are, we are sadly a long way off from achieving a society founded upon principles of fairness and social justice. Nevertheless, the demands that we make and the reforms we lobby for must be consistent with that wider vision. The way that the personalisation agenda, sold to local authorities on the basis that it would produce cost savings and tied to the marketisation of social care, has effectively undermined Disabled people’s rights and freedoms is a prime example of the dangers of focusing on reforms in isolation from wider social principles. It is therefore important that Disabled campaigners continuously review our vision and our demands.

Grassroots campaigning by Deaf and Disabled people since 2010 has been focused heavily on social rights, especially on to the right to independent living and being included in the community as set out in Article 19 of the UN Convention on the Rights of Disabled People (UNCRPD).

Article 19 – Living independently and being included in the community

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

This is for a number of reasons:

  • Measures imposed through ‘austerity’ and devastating cuts in social care are having serious adverse impacts that directly affect Disabled people’s rights and freedoms in exactly those areas set out in Article 19. Instead of closing Assessment and Treatment Units and moving people with learning difficulties and autism back to their communities, it has become more common for Disabled people to be sent many miles from their homes, families and friends due to a chronic lack of local provision. People with mental health diagnoses may also be sent a long way away for treatment. Local authorities and Clinical Commissioning Groups are introducing maximum expenditure policies which threaten to force Disabled people into residential care against their wishes. The General Comment on Article 19 published by the UN disability committee in 2017 made clear that institutionalisation of Disabled people can also occur in people’s own homes, when their basic needs are neglected and they are denied the support they need to leave the house and participate in the community. The rights to independent living and being included in the community set out in Article 19 provide a clear guide to the rights that Disabled people should be able to enjoy and a measurement framework for progression.

 

  • Austerity measures are disproportionately affecting Disabled people’s right to an adequate standard of living as set out in the UNCRPD. New assessment processes such as the WCA and PIP arbitrarily divide disabled people into the “genuine” and the “undeserving”. These assessments are informed not by Disabled people’s lived experience of impairment, but by insurance companies aiming to limit claims. The huge reduction in financial support available to many disabled people under ESA and PIP reform, combined with delays and failures in the assessment process has resulted in increased poverty and a well-documented deterioration in our wellbeing and quality of life. A number of benefit claimants are being forced to cut down on food and heating, use food banks and borrow money that they are ill-equipped to return, which is traumatising and, in some cases, has resulted in suicide. Current measures seem to have links with a neoliberal approach within which people who are regarded as wealthy, or ‘hard working’ are perceived as worthy in contrast to people with support needs who are viewed as second class citizens.

 

  • There are some acute intersectional issues. Disabled people who have more than one ‘protected characteristic’ under the Equality Act 2010, who experience additional inequalities not covered by the Act (related to socio-economic class, or homelessness, for instance), or have dual diagnoses (including substance addictions) are especially disadvantaged in relation to independent living.

 

  • There are particular issues for Disabled People who are made subject to the Mental Health Act 1983, with people from BME communities often affected particularly badly, and people deemed to lack capacity under the Mental Capacity Act. Some groups of BME service users are particularly likely to experience the controlling rather than supportive aspects of the psychiatric system. The MH Act authorises detention and compulsory treatment for people diagnosed with a (serious) mental disorder when they/others are thought to need protection. This authorisation removes their right under Article 19 to live in the community, choose their place of residence and exercise choices on an equal level with others. Detention and compulsory treatment, whether exercised through an inpatient setting, or a Community Treatment Order, also run contrary both to Article 12 and to Article 14 of the Convention. Thus the UNCRPD Committee has recommended an end both to substitute decision-making and to ‘compulsory treatment and detention of persons with disabilities on the basis of actual, or perceived impairment’. In both hospital and other settings, the UNCRPD guidance also includes an end to the use of physical and chemical restraint. People who are neurodivergent and people with life limiting chronic illness are also subject to detrimental impacts caused by inappropriate referrals to and interventions used on them within the mental health system.

 

  • The language of independent living has been appropriated by Government and public bodies to justify the cuts they are making. Policy documents at national, regional and local government levels repeatedly refer to “helping people to stay independent for as long as possible”, often while simultaneously claiming to be in accordance with Article 19 and yet demonstrating a clear failure to comprehend a concept of independent living based on Disabled people’s right to exercise choice and control over our everyday lives and to access the same chances in life as non-Disabled people on an equal footing. It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. Article 19 rights have thus been co-opted and subverted in order to facilitate the retrogression of Disabled people’s rights.

 

  • The UNCRPD is a tool that Disabled people have used to draw attention to the suffering and distress directly caused by government legislative and policy measures where we have felt listened to and our experiences validated. That gives it an immediate relevance to Disabled people’s day-to-day lives.

 

  • Disabled campaigners are proud of the independent living movement and all that it achieved. At a time when discrimination continues to exist legally, structurally and within many parts of society, daily living conditions are deteriorating and the odds against us seem overwhelming, it is enormously important to be able to draw on a source of pride that sits at the core of our shared identity. It keeps us going, reminding us how powerful we can be and what we can achieve when we collectivise and are determined. The right to independent living as set out in Article 19 gives us a clear and relatively uncontroversial goal to focus on.

There has been recent debate about whether it is useful to still use the language of independent living. We would argue that it is. With certain audiences we are seeking to influence it may be expedient to tailor language in order to be better understood and to convey our messages more effectively, for example referring to cuts to “social care” rather than “independent living support services”. Those are decisions that can be made according to particular circumstances. However, to stop talking about independent living and to shift our focus away from achieving a right to independent living would be a strategic mistake. It would rob Disabled people of one of the few things we have left to hold on to.

If new campaigners come into the movement who are only aware of the appropriation of the language of independent living rather than the proud history of the independent living movement, then it is our job to share our history and learning. We must also remember that the politics of the independent living movement, based as it is on collectivisation and grassroots struggle, will not appeal to all. There is a view that it is better to find a ‘middle way’, acceptable to the status quo than to fight for the fundamental reshaping of society, that is held for a multitude of reasons, some due to internalised oppression and others not, ranging from an absence of hope that real change is possible to a vested interest in maintaining the current system. Where those political differences exist, there will be times when we find common goals on which we can campaign together in the pursuit of reforms to mitigate and alleviate the worst harms, but we must understand them as differences and reflect on our own position within the context of our wider principles and values.

Below we set out our demands for a national independent living service capable of upholding Disabled people’s Article 19 rights and what will need to be in place to achieve it. It has been shaped and developed through ongoing debate and discussion within the Independent Living Campaign, set up in 2011, in response to the then planned closure of the Independent Living Fund (ILF) and most recently through:

  • The independent living workshop at the National Deaf and Disabled People’s Summit organised by the TUC Disabled Workers Committee and the Reclaiming Our Futures Alliance in November 2017.
  • The 2017 National Independent Living Campaign Conference funded by Disabled People Against Cuts (DPAC) and co-organised with the Reclaiming Our Future Alliance.
  • A Reclaiming Our Futures Alliance independent living round table held in May 2018 and follow up email discussions.

Disabled People’s Vision of Independent Living Support for the Future

Introduction

The social care and mental health systems are in crisis and as a result Disabled people’s rights to an adequate standard of living, to inclusion and equal participation in society are being taken dramatically backwards. Rising levels of charging are increasingly pushing Disabled people out of receiving social care altogether and leading to a growing problem of debt and arrears1. The joint report of the Health and Social Care and Housing, Communities and Local Government Committees on the long-term funding of adult social care says:

The combination of rising demand and costs in the face of reductions in funding has placed the social care system under unsustainable strain. In its present state, the system is not fit to respond to current needs, let alone predicted future needs as a result of demographic trends.”

Besides urging that research be undertaken into actual and future levels of need and for corresponding investment, Disabled people have long called for the radical overhaul of both the social care and mental health systems in order to better fit a human rights approach to disability. At present, Disabled people’s experiences of independent living and being included in the community differ considerably depending upon impairment, for example people with learning difficulties, people who are neuro-divergent and people with energy-limiting chronic illness (especially medically contested diagnoses like Myalgic Encephalomyelitis 2) are less likely to be found to have eligible needs under the social care system while people living with mental distress are largely confined to a separate system without access to the same sorts of support. Instead, we are arguing for a system underpinned by the social models of disability and distress that can be accessed by all Disabled people regardless of impairment or perceived impairment. Our vision for a national independent living support system would also eliminate the post code lottery that exists within current local authority and CCG administered provision. We believe that all independent living support should be free at the point of need and as the example of free personal care in Scotland has shown this could lead to savings in other areas such as the NHS budget3. By building on what was most successful about the Independent Living Fund which had considerably lower overheads than local authority administered support4, it could also be more cost effective than the current system.Terminology

Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. (See Appendix A).

Priority Demands

  1. Set up an independent living taskforce led by Disabled people to develop proposals for a national independent living support service.
  2. Explore in co-production with Disabled people the strongest legal frameworks for legislating for Article 19 rights, including enshrining the CRPD in domestic legislation and developing an independent living bill of rights.
  3. Make a case for investment in independent living support, including evidencing social care as a social and economic generator5 and what wider benefits could be saved from savings to NHS budgets.Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 19.
  4. Educate the public and promote the benefits of investing in support for Disabled people.

Vision

That the right to independent living as outlined in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities becomes reality:

All Disabled people to have equal rights to live in the community, with choices equal to others, and be fully included and able to participate in the community, through:

  • the opportunity to choose their place of residence and where and with whom they live on an equal basis with others, without being obliged to live in a particular living arrangement;
  • access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
  • community services and facilities, for the general population are available on an equal basis to Disabled people and are responsive to their needs.”

Underlying principles

  • Social and human rights-based models of disability and distress
  • The twelve pillars of independent living
  • The National Survivor User Network’s Manifesto
  • Article 19 of the United Nations Convention on the Rights of Persons with Disabilities
  • The UNCRPD Committee’s General Comment No 5 on Article 19

Core demand

A new universal right to independent living, enshrined in law and delivered through a new national independent living service co-created between government and Disabled people, funded through general taxation, managed by central government, led by Disabled people, and delivered locally in co-production with Disabled people.

Universal right to independent living

The UN CRPD is not enshrined in UK law and recent case law has weakened its application in interpreting domestic legislation; for example, the judgment in Davey vs Oxfordshire states that “great care must be taken in deploying provisions of a convention or treaty which set out broad and basic principles as determinative tools for the interpretation of a concrete measure such as a particular provision of a UK statute. Provisions which are aspirational cannot qualify the clear language of primary legislation.”6 The inadequacy of the Care Act 2014 to uphold the rights of Disabled people has been proven in practice. Disabled people’s concerns that the “well-being duty” implemented through the Care Act would offer insufficient protection against retrogression of our rights were ignored multiple times in the development of the legislation. Our petitioning for a right to independent living as outlined by Article 19 of the UN CRPD to be placed on the statute through the Care Act was dismissed and although the statutory guidance refers to Article 19 (para 1.19), this does not have the legal weight needed to be effective. In addition, it has not been co-ordinated well with provision for mental health service users such as the Care Programme Approach.

We call for new free-standing legislation to implement an independent living bill of rights, drawn up in consultation with organisations of Disabled People and enshrining their recommendations. This legislation would be in accordance with the UNCRPD Committee’s General Comment on Article 19, including its call to end detention, substitute decision making and compulsory treatment and to put a focus on intersectional issues too. The legislation would also cover rights to support which enable Disabled people to access the same life chances as non-Disabled people in all areas covered by the twelve pillars of independent living.

Disabled people’s rights under the new legislation will need to be communicated in accessible ways, with an appeals process, legal aid, legal status and legal support made available for Disabled people who consider their rights to have been breached.

This legislation should apply to all Disabled people who are resident in the UK, regardless of citizenship or asylum status.

National independent living service

The social care element of Disabled people’s right to independent living will be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people. It will be provided on the basis of need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation.

It will build on and learn from the success of the Independent Living Fund, closed by the coalition government in 2015, and the failures of the local authority care and support system. It will also learn from the experiences of user-led Disabled people’s organisations (DPOs), including those run by people experiencing intersectional discrimination and disadvantages, user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-Disabled allies who share the critique of the existing system and who work to the social models of disability and distress.

The national independent living service will be responsible for carrying out assessments and reviews and administering payments to individual Disabled people. Individuals will not be obliged to manage their support payments themselves if they choose not to. Alongside establishment of the national independent living service will be investment in local service provision so that within each area Disabled people will be able to choose from a range of peer support options delivered by user-led Disabled people’s organisations and co-operatives wherever they live. These services will support them to exercise choice and control over the support they receive and to manage their financial, administrative and employment responsibilities including legal duties as employers. Local Disabled people will be meaningfully involved in investment and commissioning decisions, as well as in researching and monitoring how well provision is meeting need. Disabled people who are involved in these processes will also be demographically representative.

The national independent living service will be located in a cross-government body which can ensure awareness of and take responsibility for implementation plans in all areas covered by the UNCRPD’s General Comment on Article 19 and by the twelve pillars of independent living, whether it be in transport, education, employment, housing, or social security. The cross-government body will also be responsible for ensuring that intersectional issues are adequately addressed. Rather than being ghettoised in the DWP as the Office for Disability Issues is at the moment, this will ensure that independent living is mainstreamed in every area of activity as an equalities issue rather than seen primarily as a work and benefits issue.

  • Co-created with Disabled people

The national independent living support service will be co-created with Disabled people through an independent living task force led by Disabled people who need/use independent living support.

  • Anti-discriminatory

The service will be designed to be anti-discriminatory, challenging current discriminations on the basis of age, ethnicity, sexuality, gender, class, culture, disability and distress. This will include diversity and inclusion at all levels including organisations of Disabled people and structures led by Disabled people involved in delivery of the service.7Funded through general taxation

Social care should not be funded through set precepts or levies as evidenced by the difficulties encountered in Australia with their National Disability Insurance Scheme8. Funding through general taxation allows greater flexibility to respond to changing levels of need. This could be done, as advocated by a number of recent reports,9 through “soft” hypothecation, for example a rise in National Insurance that the public understands is in order to adequately fund social care. There is much evidence that the public would be in favour of tax rises in order to fund the NHS and social care, however there is also evidence that the public vote for lower taxes and the creation of a specific levy earmarked for social care has the disadvantage of insufficient flexibility to match demographic changes. Pinpointing tax rises to cover specific areas can also be problematic in that it places the spotlight on particular groups. Funding for social care should as with the NHS be out of general taxation. Managed by central government

The national independent living support service will build on lessons learned from the Independent Living Fund in being independent of Local Authorities and CCGs. This will eliminate the current postcode lottery, which has increased since closure of the ILF10, and enable greater transparency and accountability to Disabled people.Led by Disabled people

The governance of the national independent living support service will ensure that Disabled people are involved and have a meaningful say at all levels of decision-making with a governing body that is made up of a majority of Disabled people. Structures will limit the involvement of non-user led charities and disability organisations.

  • Delivered locally

Alongside the establishment of a national independent living support service, there will be investment in the development of Disabled People’s Organisations delivering local services in response to need and ensuring that a range of options are available to support Disabled people to live in the community and exercise choice and control over the support they receive.

User-led organisations will be resourced to provide support that enables equal participation in society across all areas of Disabled people’s lives, including Access to Work11, housing12, social security and financial advice and wide-ranging service and resource provision.However, there must be monitoring mechanisms to ensure that local delivery does not deny the nationally uniform status of the entitlement to support, so that for example disabled people can move to different areas without any loss, or threat of disruption, of funding or support services.

Service provision will include a full range of alternatives to the “white western medical” model approach, psychiatric medication and clinical treatments which are prevalent in mental health services and to the re-defining of service user concepts such as recovery in clinical terms. There will, too, be a wide range of resources which are important to Disabled people who are currently disadvantaged by shortfalls in intersectional provision.

Features of a national independent living support system designed to uphold Disabled people’s rights

The national independent living support service will be co-created with Disabled people so its features will be decided by them. However, the features below reflect ideas that would address the current barriers experienced by adult social care service users.

Eligibility

In place of eligibility criteria, the service will provide support on the basis of meeting need where it exists so that all Disabled people experiencing issues that have a significant impact on their ability to live independently and be included in the community receive the self-identified support they need. Under the current system of eligibility criteria certain impairment groups are effectively excluded from social care support, for example people living with chronic illness and mental distress. Meeting wider needs saves money in the long-term by preventing crises and lessening the strain on acute services.

Assessments and support plans

Assessments should take the self-identified needs of the Disabled person as their starting point and self-assessments should be available to all who prefer this option.

Assessments should be proportionate, without compromising the dignity of the Disabled person or being overly intrusive, and to be designed and carried out with the aim of genuinely assessing need rather than looking for ways to make cuts.

Assessments should consider all areas of a person’s life including the ability to socialise and participate in the community on an equal footing with non-Disabled people, and to take part in education, volunteering and employment, and not focus solely on personal care. Equally, they should not be based upon the current approach that views employment as good for every Disabled person, regardless of the realities of their impairment and the disabling barriers they face.

Assessments and assessment reports should be respectful of the Disabled person concerned and of the Disabled person’s account of their impairment and their needs, even if this is not validated by or is at odds with medical report or diagnosis. There should be a clear distinction between assessments of need and support plans. Support plans should be based on the wishes of the Disabled person even when they disagree with the assessor’s recommendations. People should have the right to turn down services offered that they do not want or consider appropriate.

One-size fits all support packages such as reablement or intermediate care can be completely inappropriate, and indeed, harmful for people with energy-limiting chronic illness. Reablement should never be the default response to presenting care needs, nor a necessary gateway to accessing long -term support. Reablement services should only be offered if a Disabled person fully understands the concept and agrees that being supported to do more for themselves could increase function and wellbeing.

Support planning has to be genuinely co-productive. Disabled people should be supported to fully participate in this process.

Disabled people’s wishes and views on how their needs can best be met should not be over-ruled by a desire to cut costs, for example replacing support with technology or aids and adaptations in circumstances where they would reduce the Disabled person’s quality of life.

Assessments for the new national independent living service will be delivered by employees of the service itself and will not be outsourced.

Support package awards

Flexibility should be given in how payments for support can be spent, with no blanket restrictions (such as not providing night support; not funding costs for Personal Assistants accompanying Disabled people on activities; not allowing buildup of contingency funds). Disabled people’s support packages must pay enough for:

Disabled people’s support packages must cover all costs associated with managing the package and pay enough for:

  • Hourly Personal Assistant rates that reflect the skills and experience needed for the role and are in line with NHS pay scales and increase in line with inflation.
  • Pension contributions and sick pay scheme.
  • Compliance with the National Minimum Wage.
  • Increase in line with inflation.
  • Paid training opportunities for Personal Assistants and training for Disabled people in managing Direct Payments and managing staff.
  • Support from local services with supervisions, management and conflict resolution.
  • Contingency funding for periods of temporary greater need (e.g. when recovering from an operation or short-term health problem) and for temporary cover for absence of PAs due to illness or other emergencies or for if PAs resign/have to be dismissed and replacement PAs cannot be recruited immediately.

There will be no caps on how much support can be funded to support an individual to live and participate in the community.

Disabled people will not be charged for, or have to make any financial contribution towards, the support they receive through the national independent living support service.

Administration

Disabled people will have the choice to act as individual employers or to appoint local services to act as legal employers for the Personal Assistants they recruit and supervise and be responsible for administration and payroll. The costs of using administrative and payroll services of an adequate standard and quality will be covered in the independent living support awards that Disabled people receive.

Payment Cards should not be presented as the only or default option for spending support package funds as this limits choice and control while diverting substantial funds to the companies running the card services. 13

Services

Investment in local user-led services, including those led by people experiencing intersectional discrimination, responding to local need and the provision of services are informed by the views of local Disabled people from all demographic backgrounds will ensure that a range of support options are available.

This will include:

  • Peer Support Forums14, training, information and support for Disabled people using the independent living support service.
  • Direct Payment management, employment support and payroll services.
  • Independent advocacy.
  • Social security and financial advice.
  • A range of therapeutic provisions, including a wide variety of non-medical alternatives and culturally appropriate options.
  • Independent living aids, adaptations and assistive technology.

Monitoring

Monitoring must be proportionate, and be closer to the monitoring systems that were employed by the ILF than the burdensome and intrusive monitoring mechanisms used by local authorities. The National Independent Living Support Service must also be efficient and timely in its processing of monitoring information, again by contrast to common practice within local authorities.

Reviews

Reviews should take place not more frequently than once every 3 years unless circumstances change and unless requested by the Disabled person. Disabled people should not be burdened with being repeatedly forced to re-tell and explain how disability impacts on their lives; nor continuously repeat their independent living needs. This would allow the service user to forward plan their lives and the service provider is not snowed under with case work.

Where possible assessors should hold client lists, this allows for continuity, for both parties. Where a disabled person requests a review, say for a change in circumstances, there need to be easy to access mechanisms in place. Reviews, where practicable, should be carried out by the original assessor.

Appeals system

There must be a transparent and accessible complaints and appeals system for Disabled people who are dissatisfied with the service they receive or decisions made by the National Independent Living Support Service. This must also be a system which Disabled people find satisfactory in resolving concerns that they have raised.

Portability

Once assessed and an independent living package is put in place, this package should be portable. If a disabled person wishes to move, for personal, health or employment reasons, and if their support needs have not altered, then they should not be forced to go through the assessment process again.

Steps to achieving our vision

  • Office for Disability Issues to be placed within either the Cabinet Office or the Government Equalities Office to give it more reach across different Government departments.

 

  • Formation of an independent living taskforce with a meaningful influence, led by Disabled people from all demographic backgrounds who need/use independent living support.

 

  • Funding to make a case for investment in independent living support, including evidencing social care as a social and economic generator and what wider benefits could be saved from savings to NHS budgets.

 

  • Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 1915.

 

  • Funding of user-led research into alternative service options and culturally appropriate resources for Disabled people.

 

  • A communications strategy for raising awareness about what we mean by independent living, Disabled people’s human rights and the role of Personal Assistants.

 

  • Dealing effectively with stigma against Disabled people whether at political, commissioning, or service levels, or within society as a whole.

 

  • The funding of adequate training for government personnel, commissioners and service providers about the meaning of independent living and its value, led by Disabled people

 

  • A strategy for investment in local user-led provision alongside closure of institutionalised, segregated settings including long stay hospitals and Assessment and Treatment Units.

 

  • Fund work to draw up a case for investment in Access to Work, evidencing the level of return on investment to the treasury for every pound spent on AtW.

 

  • A review of Access to Work with a view to:
    • Overhauling the scheme to make it fit for purpose, significantly reduce administrative and financial errors, address lack of training and hostile attitudes from AtW advisors towards customers, and replace the current mentality of gatekeeping with a concern to adequately support Disabled people,
    • Identifying current problems experienced by existing and prospective customers and ways to make improvements
    • Ensuring provision of a supportive and effective service for Disabled customers
    • Expansion of the scheme to support volunteering and work experience
    • Improved scope for Disabled people who cannot work regularly to undertake small and occasional pieces of paid employment without their benefits being at risk.
    • Rolling it into the new national independent living support service.

 

Legislative and treaty change

  • Legislate for a free-standing right to independent living that includes an adequately resourced right to inclusive education.16
  • Implement the appeals process under the Care Act 2014.
  • Bring into force Section 1 of the Equality Act 2010 to introduce a socio-economic duty on public sector bodies and dual discrimination provisions.
  • Reverse the changes to legal aid that have restricted eligibility for Disabled people.
  • Remove UK reservations and interpretative declaration on Articles 24 of the United Nations Convention on the Rights of Persons with Disabilities17.
  • Amend the Mental Capacity Act 2005 to give full human rights to Disabled people and their families and to ensure that ‘best interest’ decisions made reflect the will and preferences of Disabled people and introduce an accessible system for people to challenge decisions made about them.
  • Bring detention, substitute decision-making and compulsory treatment to an end for all Disabled people.

 

 

Appendix A

Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. This includes:

  • People physical, mobility or sensory impairments
  • People who are Deaf
  • People with learning difficulties/disabilities
  • People living with mental distress
  • People are neuro-divergent
  • People living with chronic illness and long-term health conditions.

We recognise that not everyone within these groups identifies as Disabled and respect that not everyone with these experiences considers themselves to have an impairment. There is certainly need for wider discussion and debate on these issues, however for this paper we have taken the position that what unites us all are the disabling barriers and experiences of oppression that we face and we therefore use the term “Disabled people” to refer to all of us.

For more information on the social model of disability and cultural model of Deafness see: https://www.inclusionlondon.org.uk/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/

Appendix B

The 12 Pillars of Independent Living

Theses are:

Appropriate and accessible information

An adequate income

Appropriate and accessible health and social care provision

A fully accessible transport system

Full access to the environment

Adequate provision of technical aids and equipment

Availability of accessible and adapted housing

Adequate provision of personal assistance

Availability of inclusive education and training

Equal opportunities for employment

Availability of independent advocacy and self-advocacy

Availability of peer counselling

The twelve pillars were developed by Hampshire Coalition of Disabled People building on seven action points, originally devised by the Derbyshire Coalition of Disabled People, which identified the barriers to independent living and how they can be removed:

Information

Disabled people require information on what is available to assist with independent living.

Peer Support

Disabled people need the support of other disabled people to discuss how to make best use of the information obtained and for ongoing support.

Housing

Disabled People need accessible housing. This may be in terms of wheelchair access or in terms of support and advice in relation to having one’s own accommodation.

Equipment

Many disabled people need particular types of practical equipment to assist them in living independently.

Personal Assistants

This is the one to one support that some disabled people need to live in their own home and be part of the community.

Transport

This may mean improved public transport in terms of physical access, information about the routes, more assistance for passengers who are unsure about using public transport, and improved routes to take into account the issues for disabled people. It may mean access to personal transport such as the use of cars or support to use other forms of transport.

Access

The most obvious examples concern physical access such as dropped kerbs, level entrances to buildings and provision of accessible public toilets. However, access goes much further than this. There are barriers created by systems, practices and attitudes which prevent disabled people from participating, for example, excluding people with mental health needs from public meetings.

Appendix C

European Network for Independent Living (ENIL) Principles

1. Independent living is a process of consciousness raising, empowerment and emancipation. This process enables all disabled people to achieve equal opportunities, rights and full participation in all aspects of society.

2. Disabled people must be able to control this process individually and collectively. To achieve this goal, we provide peer support and use democratic principles in our work.

3. As equal citizens we must have the same access to the basics of life including: food, clothing, shelter, health care, assistive devices, personal support services, education, employment, information, communication, transportation and access to the physical and cultural environment, the right to sexuality and the right to marry, to have children, and peace.

4. The Independent Living Movement must be a cross disability movement addressing the needs of all disabled persons. In order for this to occur we must rid ourselves of any prejudice we have towards disabled people other than our own and encourage the involvement of disabled women and other under-represented groups. Disabled children should be enabled by their families and society in general to become independent adults.

5. Disabled people must obtain all the requirements for equalisation of opportunities and full participation by defining their own needs, choices and degree of user control.

6. The Independent Living Movement is opposed to the development and maintenance of systems which promote dependency through institutional responses.

7. Disabled people must involve themselves in research and development, planning and decision making at all levels, in matters concerning their lives.

http://enil.eu/

Appendix D

The National Survivor User Network’s Manifesto

Our Voice Our Vision Our Values

We aim to:

1. Address the injustice and harm that have been caused by cuts to public funding and changes to the benefits system

2. Make the policy of ‘getting the right support, at the right time, in the right place, from the right person’ a reality

3. Pressure mental health services to make the principle of ‘nothing about us without us’ a reality at all levels, through meaningful involvement in decisions about our own individual care and genuine co-production to develop services

4. Work together with people from socially deprived and marginalised communities to determine their support and develop alternatives

5. Challenge institutionalised discrimination and put equality back on the agenda for mainstream mental health services

6. Call for a reform of the Mental Health Act 2007 to make it fully compliant with human rights and ensure that people are not harmed or abused

7. Reflect the social model of disability and promote informed choice and alternatives to medication 8. Reclaim, challenge and revive survivor knowledge and research

8. Reclaim, challenge and revive survivor knowledge and research.

To see the full manifesto go to: www.nsun.org.uk/our-manifesto

Appendix E

Inclusion London Briefing on the UNCRPD’s General Comment no 5 on Article 19: Living independently and being included in the community

To read the full text of the General Comment go to: https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx

In August 2017 the UN disability committee published a “general comment” on Article 19. General comments provide an interpretation of the provisions of a treaty. In this case the treaty is the Convention on the Rights of Persons with Disabilities (UNCRPD).

The following points made within the General Comment are useful to note for campaigning within the context of the current situation facing Disabled people in the UK and the right to independent living

  • Investing in independent living is cost effective because it reduces poverty and therefore the dependency of Disabled people. Para. 5

  • There are NO exceptions to whom the right to independent living applies

  • Emphasis of the importance of addressing intersectional issues. – Para. 15

  • The General Comment criticizes “Inappropriate decentralization, resulting in disparities between local authorities”. – Para. 15(k)

  • Independent living should not be interpreted solely as “the ability of carrying out daily activities by oneself”. – Para. 16(a)

  • Article 19 recognises the importance of a “full social life” within the right to independent living including all “spheres of social life” such as cultural, political and leisure activities and “shopping”. – Para. 16(b)

  • Institutionalisation is not limited to people being kept in long stay institutions but includes where Disabled people are confined in their own homes, isolated and effectively segregated, unable to access the community due to lack of funding in personalised support options. – Para. 16(c)

  • The obligatory sharing of personal assistants is mentioned a number of times as contrary to the right to independent living. – Para. 16(c)

  • Funding for personal employment must take into account “human rights standards for decent employment”. – Para. 16(d)(i)

  • Where a State party introduces measures which regress Article 19 rights in response to economic or financial crisis the State Party is “obliged to demonstrate that such measures are temporary, necessary and non-discriminatory”. – Para. 43

  • State parties must ensure that private institutions are not established in the guise of “community living.”” – Para. 51

  • The availability of accessible and affordable housing is crucial for de-institutionalisation. – Para. 53

  • It is against Article 19 to exclude Disabled people who require higher levels of support and have more complex needs. – Para. 60

  • All personnel working in relevant areas including “civil servants monitoring services” need to be adequately trained on independent living, both training and practice. – Para. 65

  • An end must be brought to substitute decision-making and involuntary institutionalization. – Para. 83

  • There must be mechanisms to allow Disabled people to appeal against decisions concerning independent living and “substantial” rights to legal aid must be in place. – Para. 82

  • Independent living in inherently linked to inclusive education. Para. 89

1

 An investigation by GMB union has revealed at least 166,000 people are trapped in debt for their social care. http://www.gmb.org.uk/newsroom/social-care-debt

2

 Action for ME (2015) Close to collapse: an interim report on access to social care and advocacy for people with ME/CFS

3

 Both the Joint Committee report and the recently published Lord Darzi Review into Health and Social Care recommend the introduction of free personal care.

4 According to the final annual report and accounts of the ILF from end of March 2015, the Fund had a 98% service user satisfaction rate and just 2% of the budget was spent on administration.

5

 Beresford, P. (2016), All Our Welfare: Towards participatory social policy, Bristol, Policy Press.

6

 Davey, R (on the application of) v Oxfordshire County Council & Ors [2017] EWCA Civ 1308 (01 September 2017) Paragraph 62.

http://www.bailii.org/ew/cases/EWCA/Civ/2017/1308.html

7

 Building on work developed by Shaping Our Lives looking at overcoming barriers to more inclusive user involvement : http://www.invo.org.uk/beyond-the-usual-suspects-towards-inclusive-user-involvement/

8

 The NDIS was financed by an increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of taxable income. This has proved to provide be insufficient funding, and there are now concerns of a lack of public will for an increase.

9 Long-term funding of adult social care – First Joint Report of the Health and Social Care and Housing, Communities and Local Government Committees of Session 2017–19

https://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/768/76810.htm#_idTextAnchor124

Citizens’ Assembly on Social Care: recommendations for funding adult social care

https://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/citizens-assembly-report.pdf

The Lives we want to Lead: the LGA green paper for adult social care and wellbeing – July 2018

https://futureofadultsocialcare.co.uk/

The Lord Darzi Review of Health and Care Final Report: BETTER HEALTH AND CARE FOR ALL A 10-POINT PLAN FOR THE 2020s, Institute for Public Policy Research; Lord Darzi June 2018

https://www.ippr.org/files/2018-06/better-health-and-care-for-all-june2018.pdf

10

 See Inclusion London’s report “One Year On: Evaluating the Closure of the Independent Living Fund”

https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/independent-living-social-care-and-health/ilf-one-year-on/

11

 So long as Access to Work remains separate – we favour these being rolled into the new independent living service.

12 We also favour Disabled Facilities Grants being eventually rolled into the new independent living service.

13

 A report from the Independent Living Strategy Group found that over a million pounds a year is spent on fees and costs to operate the cards and that an estimated £1.5 million has been spent by 71 local authorities introducing the schemes.

14

 These should focus on building peer support communities and not take the form of professionalised one to one peer support.

15

 Both the Joint Committee report on the long-term funding of adult social care and Lord Darzi’s review of Health and Social Care recommend a need for data modelling.

16

 The UN Disability Committee’s General Comment No. 5 on the Right to Independent Living and Being Included in the Community made clear that inclusive education is an integral part of Disabled people’s rights under Article 19. The UK government continues to have a reservation on Article 24 and maintains its position of offering segregated education as a “choice”.

17

 Article 24 is the right to inclusive education.

 Posted by at 22:27
Jan 032019
 

Ministerial disability group met just three times… and then was scrapped

A cross-government group of ministers set up to “encourage and stimulate progress” towards the inclusion of disabled people in society met just three times before it was scrapped, the government has been forced to admit.

Information released by the Department for Work and Pensions (DWP) under the Freedom of Information Act shows that the government spent nearly four years without any cross-departmental group of ministers working to improve the lives of disabled people.

The information was finally released by DWP following a freedom of information request submitted by Disability News Service (DNS) in June 2018.

But it was only released four days before Christmas, after DNS had lodged a complaint with the Information Commissioner’s Office about DWP’s refusal to provide information about the inter-ministerial group.

Following the first meeting of the group of 13 ministers on 13 March 2014, the then minister for disabled people, Mike Penning, said that setting up the new body showed “how seriously this Government takes improving the lives of disabled people”.

The DWP response reveals that the cross-government group of coalition ministers also met in June (chaired by Penning) and September 2014 (chaired by the new minister for disabled people, Mark Harper) but then failed to meet again before the general election the following May.

The group was set up as part of the coalition’s Fulfilling Potential strategy, which also saw the creation of the Fulfilling Potential Forum, the Disability Action Alliance and the Fulfilling Potential Policy Advice Service, all of which were subsequently scrapped or fell into disuse.

Under the Conservative government elected in 2015, there was no attempt to resurrect the ministerial group on disability, and Theresa May’s new minority government then waited another year after the 2017 general election before setting up a replacement group of 10 ministers in May 2018.

Sarah Newton, the new minister for disabled people, announced in May that she was “really pleased” to announce that the government had created a “new” inter-ministerial working group that she said would “bring the full force of the Government behind ensuring that every disabled person in our country has the ability to reach their full potential”.

This decision came eight months after the UN’s committee on the rights of persons with disabilities told the UK government to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights, and concluded that its cuts to social security and other support for disabled people had caused “a human catastrophe”.

DWP’s freedom of information response to DNS said the department had “reconsidered its position” and no longer wished to rely on an exemption in section 35 of the Freedom of Information Act, which covers communication between ministers and related information.

DWP said it had therefore decided to release the dates of the meetings of the inter-ministerial group (IMG) and the names of the ministers who attended.

But the response said the department held no recorded information that explained why it had decided to scrap the group, and it added: “It is a normal part of procedure for an IMG to be discontinued following a change in government.”

A DWP spokesperson refused to say by noon today (Thursday) why no meetings had been held after September 2014, why the 2015 government did not set up a similar group, and why the 2017 government took until May 2018 to set up an inter-ministerial group.

She also refused to say whether the information released showed a lack of interest in cross-government working on disability between September 2014 and May 2018, and whether the decision finally to set up another group was related to the UN committee’s report.

Instead, she issued a statement claiming that “empowering disabled people in all aspects of their lives has always been and will continue to be a priority for this Government”.

She said: “That is why the Office for Disability Issues continues to drive forward work across the whole of Government to increase disabled people’s participation in society, including through the Inter-Ministerial Group on Disability and Society, which is just one of the many ways in which we’re driving progress on the issues that matter to disabled people.”

3 January 2019

 

 

Backlash over ‘disgraceful’ police force that passed video footage to DWP

A Labour police and crime commissioner is facing criticism from within his own party for endorsing his force’s “disgraceful” decision to pass video footage and other information about disabled anti-fracking protesters to the Department for Work and Pensions (DWP).

Wayne Blackburn, co-chair of Disability Labour but also a borough councillor in Lancashire, has written to police and crime commissioner Clive Grunshaw to express his alarm and shock at the tactics of Lancashire police.

Cllr Blackburn is among scores of disabled campaigners who have raised similar concerns since Disability News Service (DNS) revealed last month that the force had passed information and footage of disabled protesters to DWP – in an apparent attempt to have their disability benefits removed – and then claimed that it had “a duty” to do so.

Two senior political figures – Labour’s shadow chancellor John McDonnell and the Green party’s co-leader Jonathan Bartley – have also called for an inquiry into claims that Lancashire police officers have targeted and assaulted disabled people taking part in the protests.

The DNS reports mostly focused on police tactics during peaceful protests about the drilling activities of the energy company Cuadrilla at Preston New Road, on the edge of Blackpool.

Cllr Blackburn told Grunshaw in the letter that he was “deeply concerned” to hear that Lancashire police was passing information and footage to DWP, which he said was “in clear contravention of any person’s right to peaceful protest”.

He said he agreed with McDonnell that these tactics were “shocking” and “unacceptable”, and he said that he was “personally disappointed” that Grunshaw supported the force’s actions.

Cllr Blackburn has asked Grunshaw a series of questions about the force’s relationship with DWP, including asking him: “Are you concerned that you and Lancashire Police are adding to the Conservatives’ hostile environment towards disabled people?”

A spokesperson for Grunshaw told DNS that he was “aware of the concerns raised and will be responding to the questions posed by Cllr Blackburn”.

Following the DNS reports on Lancashire police sharing information with DWP, many disabled campaigners took to social media to express their alarm.

Mark Brown, who writes and speaks about mental health issues, said on Twitter that the force’s actions needed to be seen in the context of “15 years of anti benefits rhetoric” which had led to social security turning into “social surveillance”.

He said: “In the UK we’ve tried to drive down public spending by activating people’s worst instincts and then telling them they’re good boys for telling tales.

Disabled people, especially people with #mentalhealth difficulties, live in fear of malicious fraud allegations.”

After Lancashire police defended its actions on Twitter – telling DNS that it had a “duty” to contact DWP if it had information “to suggest fraud may be being committed” – there was widespread anger among disabled people, including those claiming benefits.

The Mental Health Resistance Network tweeted in response: “This is truly shocking. So even the police have joined in the war against disabled people.”

Another mental health activist, Rick Burgess, tweeted: “The uniting of the shadow DWP penal system and the established criminal justice system, where if one cannot get you the other will, is a highly significant intersection.

We are now under full Stasi like conditions.”

Activist and researcher Caroline Richardson, a member of the Spartacus Network of disabled campaigners, said the force’s actions were “discriminatory and frightening”.

She said on Twitter: “Being reported maliciously for fraud is more worrying than being assessed.

This sends a clear message that if you protest then the Police will report you on suspicion of fraud, without reason/evidence/proof.”

Film-maker and author Richard Butchins told the force on Twitter: “Your officers can have no idea if fraud is being committed but they are clearly spiteful petty minded servants of those in power – disgraceful behaviour.”

Dr Jay Watts, an activist and consultant clinical psychologist, said such actions were “an affront to civil liberties of disabled people” and that a few minutes of video from a protest gave “a false perception of ability”, with disabled protesters often facing “weeks of physical and psychological backlash afterwards but do so to make the world fairer”.

Paula Peters, a member of the Disabled People Against Cuts national steering group, said the police actions were “horrendous and disgusting”, and that “attacking disabled protestors then reporting them” was “the lowest of the low”.

Felicity McKee told Lancashire police: “You can have a disability and leave the house. We don’t just sit inside all day.

Disabilities can vary from day to day, as some days I’m better than others. That isn’t fraud [it is] just fact. What you’ve done is so immoral it’s shocking.”

Another Twitter user with a fluctuating condition, @mookpixie, said: “This is disgraceful. My illness is mostly invisible and varies hugely from hour to hour, let alone day to day.

Most times I leave the house for an hour or two, I then spend days in bed recovering. Could you tell all that from video footage of me leaving the house? No.”

And @neonwheelchair tweeted: “I very, very rarely leave the house now as if they took my PIP away, I’d end up homeless. We can barely eat as it is and can’t heat our home.”

Another, @vashti, added: “You guys suck. You are the reason I’m too frightened to go outside even when, well within my PIP criteria, I’m well enough to do so.”

Meanwhile, the National Police Chiefs’ Council (NPCC) said it was not aware of any targeting of disabled protesters at anti-fracking protests.

An NPCC spokesperson added: “If an incident has occurred contrary to that, it is for the force’s professional standards department to address it in the strongest possible terms.”

Terry Woods, assistant chief constable for Lancashire police and the NPCC lead on shale, gas and oil exploration, said in a statement: “Police forces will always facilitate the right to peaceful protest, while ensuring that disruption to their local communities is kept to a minimum. 

Police officers are trained in maintaining public order and using the minimal force to do that. 

When an officer does need to use force they are accountable for ensuring it is lawful, proportionate and necessary. 

Existing guidance on dealing with fracking protests is currently under review by the College of Policing.

No police guidance has ever, or would ever, recommend targeting disabled people.”

A College of Policing spokesperson said it hoped to launch a public consultation on its updated guidance on the policing of long-term protests in the first quarter of 2019.

The guidance will contain a section about protests focused on onshore oil and gas exploration.

3 January 2019

 

 

Bungling DWP announces seventh review of disability benefits errors in a year

The Department for Work and Pensions (DWP) has been forced to launch its seventh costly trawl through the records of disabled people unfairly deprived of benefits following years of serious errors by senior civil servants.

The minister for disabled people, Sarah Newton, announced on the last day before parliament’s Christmas recess that her department would begin another new review this month.

It follows six other reviews launched by her department during 2018 to find disabled people who had been wrongly deprived of their disability benefits.

The latest review is necessary because of an upper tribunal ruling in the case of a claimant moving from disability living allowance (DLA) to personal independence payment (PIP) who had his DLA stopped because he had failed to attend an Atos face-to-face assessment.

The upper tribunal found that the claimant, OM – who had long-standing psychosis, and became agitated and aggressive around people he did not know – had “good reason” for not attending the PIP assessment that the government contractor Atos had told his wife he would have to attend in one of its London centres.

The upper tribunal found that OM should have his DLA reinstated until a final decision was made on his PIP claim, while he should also receive backdated payments from the date DWP stopped his DLA.

This same approach will now be applied to other cases where DLA claimants have had their benefits stopped for not having “good reason” for failing to attend or participate in their PIP consultations, or to provide the necessary information or evidence for their PIP claim, but were later found by DWP or a tribunal that they did have “good reason” for not doing so.

Newton said DWP expected about 4,600 claimants to benefit from a review of such cases.

It has taken DWP more than a year to implement the tribunal’s ruling, which was handed down on 23 November 2017.

The review follows six others that DWP was forced to begin during 2018, all as a result of errors by senior civil servants in the department.

In June, Newton announced a review following a tribunal ruling delivered in March 2017 – concerning a PIP claimant referred to as RJ – on how DWP assesses whether disabled people can carry out activities safely and need supervision to do so.

This was likely to affect people with conditions such as epilepsy, with an estimated 10,000 PIP claimants set to benefit by £70 to £90 per week by 2022-23.

In the same week in June, Newton announced a review of an estimated 1.6 million PIP claims to find claimants who experience mental distress when making or planning a journey.

This followed a court ruling in December 2017 – in the case of a claimant referred to as MH – which found that new rules introduced that year by DWP were unlawful, “blatantly discriminatory” and breached the UN disability convention.

A third review announced in June 2018 related to the way DWP had been assessing an estimated 420 PIP claimants with haemophilia who have the associated condition haemarthropathy (a severe type of arthritis caused by bleeding into the joints).

A fourth review was launched so that DWP could trawl through the files of thousands of other PIP claimants who need support to take medication and monitor their health conditions, following two tribunal findings – in the cases of AN and JM – that found that DWP should have been scoring such claimants in the same way as people needing support to manage treatment therapies such as dialysis.

The fifth review followed a high court ruling in June 2018 that DWP had unlawfully discriminated against two disabled men who each lost disability premiums worth £178 per month when they moved to a new local authority area and were forced to transfer onto the new universal credit.

The sixth review followed the botched migration of an estimated 70,000 former claimants of incapacity benefit and other benefits to employment and support allowance (ESA).

DWP failed to realise that many of these claimants were entitled to income-related ESA – and therefore to associated disability premiums – rather than just the contributory form of ESA.

A DWP spokesperson said in a statement on the latest – seventh – review: “We accepted the judgment and we are committed to implementing it correctly.

Making the necessary changes to guidance is complex and it is right we proceed carefully to ensure claimants receive the payments to which they are entitled.

We have recruited hundreds of extra staff to complete these exercises as quickly as possible.

We take matters relating to benefit underpayments seriously and will learn the lessons from the issues raised.”

By noon today (Thursday), she had declined to confirm that this was the seventh review to be launched by DWP in the last 12 months.

3 January 2019

 

 

Traumatised child rape survivor harassed again by DWP as he waits to give evidence

A traumatised benefit claimant has accused the Department for Work and Pensions (DWP) of “sheer malice” after it again broke its promise to stop harassing him while he waits to give vital evidence in a child abuse trial.

DWP’s contractor Maximus sent David* a text message last month telling him that his employment and support allowance (ESA) could be at risk if he failed to attend an assessment set to take place just two days after Christmas.

Disability News Service (DNS) has been reporting on DWP’s continuing harassment of David* since 2016, when former minister for disabled people Justin Tomlinson threatened to stop David’s benefits if he failed to co-operate with an Atos personal independence payment (PIP) reassessment.

David has been told by police that his medical file is sub-judice and cannot be discussed with anyone while the legal process is ongoing, and so he cannot allow DWP or Atos or Maximus access to his medical records.

He has severe post-traumatic stress disorder, caused by the horrific sexual abuse he suffered as a child, and which has led to several suicide attempts.

In 2017, DWP broke its promise not to harass David when Atos asked him to attend a face-to-face personal independence payment (PIP) assessment.

Last year, DWP broke its promise again, when it contacted him to tell him he needed to fill in a new PIP form, before later accepting its error and extending his PIP award.

But the harassment has continued.

On 20 December, he received a text message from Maximus – which carries out assessments under the name of its subsidiary, the Centre for Health and Disability Assessments – warning that his ESA was at risk if he failed to attend a work capability assessment (WCA) on 27 December.

When he rang DWP to complain, he was even told by a civil servant that he was fabricating his claim that his medical evidence was sub-judice.

David said DWP’s continuing harassment was “completely draining”, “dehumanising” and “extremely distressing”, and he could not understand why the department continually ignored the fact that his medical records were crucial evidence in ongoing child abuse proceedings.

He said: “It’s like I can’t escape their gravity of sheer malice and hubris.

I would ask why they repeatedly seek to interview a proven child rape victim.

I’m tired of people thinking I’m a lab animal to be cut open alive.” 

A DWP spokesperson: “We are sorry for any distress felt by [David].

We are all doing everything we can to ensure he continues to receive the benefits he is entitled to.”

The spokesperson said the WCA had now been cancelled, and David had been allocated a member of staff to be a single point of contact with his PIP and ESA.

Asked how this latest harassment had happened again, another spokesperson said: “We’ve addressed [David’s] case and a staff member is working with him to ensure he gets the right support.

We don’t have anything further to add but do look into any issues which are raised by claimants, including on their experience with DWP staff and contractors.”

A Maximus spokesperson said: “As soon as the case was withdrawn by DWP, we cancelled the appointment and immediately ceased our attempts to contact the customer.”

*He cannot be named for legal reasons

3 January 2019

 

 

Government broke freedom of information laws over access to 10 Downing Street

The government has broken freedom of information laws by refusing to release documents that could reveal why it has failed to ensure there is a wheelchair-accessible front entrance to 10 Downing Street.

The information commissioner has ruled that the Cabinet Office breached the Freedom of Information Act by failing to release reports to Disability News Service (DNS), including any documents that mention the two steps leading to the iconically-inaccessible front door.

DNS has been trying for more than a year to discover what discussions have taken place about removing the steps.

Although there is step-free access at the rear of 10 Downing Street, wheelchair-users wishing to use the front door must rely on a portable ramp.

The latest request for information came in July 2018, when DNS asked for “any reports or documents on the subject of disability access (including those relating to the steps leading to the front door) at No 10 Downing Street that have been prepared over the last two years”.

The Cabinet Office insisted that the only relevant recorded information was a 20-word extract from a draft memo that had already been released, which spoke of the “improved accessibility” from increasing the size of an internal lift.

But DNS argued that a Number 10 spokesperson had claimed that Downing Street had “undertaken a programme of works over recent years to make sure this historic building is accessible to all who visit”, while Historic England had said the Cabinet Office was “rolling out a programme of improvements to the grade I listed complex to proactively address disabled access”.

Historic England had also told DNS that an “accessibility audit is still being worked through and we will continue to advise as necessary”.

Despite these statements, the Cabinet Office had insisted to the information commissioner that it held no recorded information on disability access at Number 10, or reports or documents concerning discussions with Historic England.

Historic England has also since admitted that it does hold information about access at 10 Downing Street dating back five years but has argued that it cannot release it because of “national security” concerns.

The information commissioner, Elizabeth Denham, has now concluded that the Cabinet Office “holds further information within the scope of the request” and had breached sections 1 and 10 of the Freedom of Information Act.

The Cabinet Office will now have to produce a legal response to DNS by 24 January, either producing the information or explaining why it has an exemption from doing so.

The Cabinet Office said it would now review its response to the DNS freedom of information request.

A government spokesperson said: “We are committed to ensuring Downing Street is accessible. 

A custodian is constantly stationed at the front door so that access can be provided to the building at any time of day. 

In addition, a new lift and more accessible toilets have been installed as part of work to improve facilities in this historic building.”

3 January 2019

 

 

OBE ‘is overdue recognition of importance of inclusive education’

A disabled campaigner says the decision to award him an OBE is an overdue recognition of the importance of inclusive education.

Anthony Ford-Shubrook, a youth ambassador with the charity AbleChildAfrica and a trustee of The Alliance for Inclusive Education, was among the disabled people recognised in the new year honours.

Ford-Shubrook, who has campaigned for inclusive education both in the UK and Africa, was awarded the OBE for services to disabled children in Africa.

He said he was “completely shocked” and “ecstatic” when he heard of the award and was “still in shock” now.

In 2016, Ford-Shubrook was one of 17 inaugural Young Leaders – and the only disabled young person – chosen by the UN to promote its Sustainable Development Goals.

At AbleChildAfrica, he continues to campaign for disabled children’s right to inclusive education and sports, and to healthcare.

He has recently returned from Kenya and Rwanda, where he delivered training to young disability rights activists on how to advocate for education for disabled children and young people.

Now in his early 30s, as a teenager he successfully took a pioneering legal case – backed by the Disability Rights Commission – against a sixth form college that had decided the stair-climbing wheelchair he needed to use to reach a first-floor classroom would be a health and safety risk.

It was the first time an injunction had been used to enforce the Disability Discrimination Act in education.

And his undergraduate dissertation on access to education for disabled children in a South African township is used by the South African government in its training for teachers working with disabled children.

He told Disability News Service: “The fact that I’ve been awarded [an OBE] shows that although there’s a lot of work to be done, people are finally realizing the importance of inclusive education, and the benefits it can bring.”

And he said he hoped the OBE would help him continue his campaigning on disability, both in the UK and in Africa. 

He said the fight for inclusive education had been “very important” in his life, because “without going to a mainstream school I would not have had the opportunities I’ve had, would not have been able to do many of the things I’ve done”. 

The government’s own figures showed that only four per cent of recipients in the 2019 new year honours list said they were disabled, compared with five per cent in the 2018 list.

Among other disabled people recognised are broadcaster, conservationist, author and naturalist Chris Packham, presenter of BBC shows such as The Really Wild Show and Springwatch, who receives a CBE.

Packham won widespread praise for the 2017 documentary Chris Packham: Asperger’s and Me, in which he discussed being autistic and made it clear that he would not want to see a “cure” for autism.

He said after the documentary was aired: “We don’t need a cure, there is nothing wrong with us – we are different.

And that difference has enormous biological and social importance.

Many of us have skills to invent solutions, produce art and science to benefit all and to receive these gifts all we need in return is understanding, tolerance and acceptance.”

A CBE is also awarded to artist Yinka Shonibare, whose work explores issues of race and class through painting, sculpture, photography and film, and who has supported disability arts organisations such as Shape Arts.

Martin Stevens, chair of Disability Rights UK, is recognised with an OBE for services to people with multiple sclerosis.

Stevens, who has MS himself and has a background in accountancy and business management, is a long-term volunteer for the MS Society and a trustee for the Multiple Sclerosis International Federation.

Also awarded an OBE are Robin Hindle Fisher, a trustee with Scope, who chaired the charity’s Extra Costs Commission, which looked at ways to alleviate disabled people’s extra living costs; and former Scottish rugby international Doddie Weir, who set up a charity to raise funds to research potential cures and support others with motor neurone disease after he was diagnosed with the condition.

Disabled people awarded MBEs include campaigner John Davidson, for services to people with Tourette’s; wheelchair basketball coach and retired Paralympian Caroline Matthews; and motivational speaker and diversity consultant Andrew Walker.

British Wheelchair Basketball (BWB) said Matthews was a “true ambassador of the sport” and had “tirelessly worked to further the development of wheelchair basketball within Wales and on the international stage”.

As well as winning 125 caps for Great Britain between 2002 and 2011, and competing at the Athens and Beijing Paralympics, BWB said she had “changed the landscape of the sport within Wales” and had been either head coach or assistant coach at club, regional, national and international level.

3 January 2019

News provided by John Pring at www.disabilitynewsservice.com

 

 Posted by at 14:52