Dementia Friendly Communities, Falling Access To Work and Fit For Work figures, Disabled ethnic minorities, PIP assessments, Transport challenge, Farewell Jack

So what do you think of our new website? Fresh, clean and easier to navigate is what I hope you will say. I am concerned to ensure that the site is as accessible as possible and this latest version really delivers. Or at least that’s what my friend Graeme Whippy has told me – and he should know as he’s an accessibility expert and he built the new site! So please let us know what you think – if you do happen to encounter any accessibilty issues Graeme has assured me he’ll do everything possible to sort them out.

I’ve just come back from a few days camping in our motorhome in and around north Wales. Don’t mention the weather it was dire! Nonetheless it was nice to get away and go visiting family. The motorhome works pretty well for me from an access point of view and the sites we stayed on had fully accessible toilet and shower facilities. It’s worth mentioning the real progress that the Caravan Club and the Camping and Caravaning Club have made in making their sites more accessible. I’m now quite surprised if I can’t locate an accessible one regardless of where we go in the UK. (Can’t say the same about some of the commercial sites).

While we were away we visited the magnificent Powis Castle. Castles were clearly designed to either keep people out or keep people in so access was never high on the architect’s list of must haves. Powis is no exception, its built on top of a steep terraced hill and surrounded by gardens arranged on steeply sloping different levels. The owners, the National Trust, have done a fantastic job of making the gardens accessible and although some gradients are pretty steep it is possible for wheelchair users to get round. They have also provided a virtual tour of the Castle itself which helps get round the fact that the building is largely inaccessible. One final point they do serve a very nice lunch!

On a sad note it has just been announced that Lord (Jack) Ashley has passed away. Those of us who had the priviledge to work with him will never forget how hard he worked in order to improve the rights of disabled people. A tremendous, selfless and unique man who will be hugely missed.

Dementia Friendly Communities

On 26th March the Prime Minister delivered a speech in Parliament outlining the need to deliver improvements in dementia research and care by 2015 and the government’s commitment to that end.

The need is pressing: 1 in 3 of us who live to over 65 will have dementia before we die; currently 800,000 people in the UK have dementia; only 42% of people who have dementia have a formal diagnosis and receive appropriate support, likewise those who care for them; the cost to the UK economy of dementia is £23b per annum.

The PM’s challenge on dementia covers three areas: improvements in health and care, better research and creating dementia friendly communities.

Champion Groups have been created to deliver the action plans for the three challenge areas.

The Dementia Friendly Communities Champion Group is comprised of leading businesses that have pledged to look at how they and others can play a part in creating a more dementia friendly society and raise awareness of dementia.

What is a “Dementia Friendly Community”?

It’s one where dementia is understood, recognised and accommodated in everyday live.

People with dementia will be treated with respect, have dignity and be given as much independence as possible.

Life for their carers will be as straight forward as possible and they can have their own life in addition to being a carer.

Overall the goal is for people to “live well with dementia”.

The inaugural meeting of the Dementia Friendly Communities Champion Group took place on 26th April; chaired by Angela Rippon OBE, Alzheimers Society Ambassador, and Jeremy Hughes, CEO Alzheimers Society, the members of the group heard personal stories from those with dementia, those caring for people with dementia and organisations already working towards raising awareness about dementia.

This set the scene for a discussion about how to deliver the goals of the group and the development of the action plan.

The Dementia Friendly Communities Champion Group will be reporting progress back to the Prime Minister in September.

Meanwhile, the impact of being involved in the challenge has become apparent to Champion Group member Lloyds Banking Group: on hearing in the Prime Minister’s speech that Lloyds were committed to getting involved in the challenge, customer Chris Ward contacted the organisation to express his gratitude as he lost his father to Alzheimers in 2008.

Chris has written a song with lyrics that express the sadness of all those in that situation – “you’re a shadow of your former self but I still love you Dad” – and is now using this to raise £1000 for the Alzheimers Society – visit worriedaboutmydaddy.com to learn more and donate.

It’s clear to Lloyds Banking Group that committing to the PM Challenge on Dementia is the right thing to do for their customers and society as a whole. Let’s hope other organisations follow their lead and that of the other pioneers in the Champions Group.
Access to Work figures plunge again

New figures show the number of disabled people granted funds to make their workplaces more accessible has fallen sharply again.

The number of “new customers helped” through the Access to Work (AtW) scheme has been falling steadily since the general election in 2010, apart from a small rise in the second quarter of 2011-12.

But the latest figures appear to show that that increase was just a blip, with the number of new customers helped falling from 2,660 in the second quarter of 2011-12 to just 2,390 in the third quarter, a drop of more than 10 per cent.

If this trend continues, the number of disabled people helped for the first time through the scheme is set to dip below 10,000 in 2011-12, compared with a peak of 16,540 in 2009-10.

The new figures were released on the same day that Maria Miller, the minister for disabled people, told the all-party parliamentary disability group that disabled people whose jobs were at risk because of losing their disability living allowance through the government’s cuts and reforms should think of applying for AtW instead.

A Department for Work and Pensions spokesman suggested that the fall in new AtW customers helped was likely to reflect an increase in the contributions many employers now have to make towards funding lower-cost adaptations.

And he said the number of existing customers continuing to receive AtW support was still rising, while the government had spent £105 million on AtW in 2010-11, £6 million more than in 2009-10.

He said there had also been a rise in the number of new customers with mental health conditions and learning difficulties.

The latest figures follow a series of concerns about the coalition’s commitment to the scheme – which provides funding for adaptations, equipment and ongoing support at work – since it came to power.

In August last year, Disability News Service revealed that disabled people receiving AtW were being sent “hostile” and “threatening” letters by DWP, giving them just a week to confirm they still needed their funding before it was withdrawn.

Last June, Liz Sayce, chief executive of Disability Rights UK, published a review of employment support for the government and focused strongly on the need to expand and improve AtW.

But the government’s response to her review made several references to concerns that her AtW recommendations could put “additional pressure on funding at a time when resources are limited”.

And in 2010, the government backtracked on a high-profile pledge to allow disabled people to secure AtW funding before they applied for a job.

The coalition also quietly introduced new rules which mean employers or disabled employees themselves now have to fund equipment such as basic versions of voice-activated software, most adapted chairs, and satellite navigation devices, rather than having them funded through AtW.

For information on AtW, visit the government’s Directgov website.
Disabled minority ethnic communities ‘face disaster’

Black and minority ethnic (BME) disabled people face a “disaster”, with deteriorating health, increased poverty, and lower life expectancy, if nothing is done to deal with their unmet needs, according to a leading disabled activist.

The warning comes as a new report warns that BME disabled people face “wide-ranging, subtle and complex” forms of discrimination, and have “considerable” unmet needs.

The report, Over-looked Communities, Over-due Change, says many BME disabled people – particularly women, migrants and carers – face social isolation.

Many of those who took part in research for the report struggle with inaccessible services, and have experienced stigma within their own communities because of their impairments.

Recent migrants and older people frequently felt their limited spoken English was a barrier to obtaining the services they needed, the report says.

Although there was little evidence of direct racism in service provision, the researchers did find examples of discrimination based on ethnicity and disability, such as care workers who refused to take their shoes off when visiting a disabled woman’s house and other such cases of a “failure to adapt working practices to cultural preferences”.

The research was carried out by Equalities National Council (ENC), a BME disabled people’s organisation, and the disability charity Scope.

Julie Jaye Charles, ENC’s chief executive, said she was not surprised that the report revealed deprivation “right across the board”, including in housing, education, employment and health, as well as a clear need for more advocacy support.

She said: “There is a huge need out there that cannot be ignored anymore. There must be resources allocated to it.”

She warned that if nothing was done, there would be “a disaster” for disabled BME communities.

She said: “People are going to be dying younger, people’s health is going to be deteriorating quickly, there will be a rise in mental health difficulties, people will lack trust in government and I also think the housing needs of individuals will get worse.”

But she also said that parts of the disability movement itself were guilty of “blatant discrimination”.

She said: “BME disabled voices are not heard in the mainstream disability movement. I have always said that it needs to have a better understanding of the needs of BME disabled people and it needs to act on it. They should be fighting for us to get the resources, to turn this around.”

But she also called on the big, non-user-led disability charities to start working with smaller organisations of disabled people, particularly the few BME, user-led organisations.

She hopes eventually to see a series of social enterprise “hubs” across the country that mirror ENC’s provision of advocacy and mentoring in London, to help BME disabled people access services and improve their lives.

The report says there are an estimated one million BME disabled people in the UK, and nearly half live in households in poverty (44 per cent, compared with 32 per cent of all disabled people, and 17 per cent of non-disabled people), although the true levels of poverty are likely to be even higher once disability-related costs are taken into account.

And even though employment rates for BME disabled people are also lower, with about half of all working-age disabled adults in employment, compared with only three in ten Pakistani or Bangladeshi disabled people, BME disabled people are less likely to be receiving benefits than other disabled people.

The report contains a number of other recommendations for local and national government and service providers, including a call for more person-centred services and information in other languages than English.

It suggests that local councils run targeted information campaigns to raise awareness of services, and that they improve their knowledge of BME disabled people’s needs.

The report also calls on the government to ensure that BME disabled people’s needs and views are included in both its upcoming disability strategy and a new race equality strategy, with an implementation plan linking the two strategies, and ensure that BME disabled people are considered when assessing the equality impact of its policies.
Grayling silent on further fall in ‘fit for work’ figures

New figures show the proportion of disabled people found eligible for unconditional support under the much-criticised “fitness for work” regime is continuing to rise.

The figures suggest that improvements to the work capability assessment (WCA) – which tests eligibility for employment and support allowance (ESA), the replacement for incapacity benefit – are beginning to take effect.

Rather than focusing on the improvements, the Conservative employment minister Chris Grayling said the figures showed “the majority of new claimants to sickness benefits are in fact able to do some work”.

But the figures show that Grayling may not be able to continue making that claim for much longer.

From June to August last year, about 27 per cent of new claimants were placed in the support group, for those with limited capability for work-related activity, with another 19 per cent placed in the work-related activity group, for those with lower support needs who are expected to move gradually towards work. Both groups receive ESA.

The other 54 per cent of those whose WCAs had been completed were found fit for work.

The number found fit for work is likely to fall even further once the results of appeals have been included.

When the WCA was first introduced, just 11 per cent of new claimants were placed in the support group, with 65 per cent found fit for work.

The figures provide fresh evidence of the unfairness of the original WCA, introduced in 2008 by the Labour government.

Disabled activists believe the WCA is still inflexible and unfair, despite the changes aimed at improving the test, many of them as a result of independent reviews by Professor Malcolm Harrington.

The report itself suggests the “downward trend” in claimants assessed as fit for work could be due to the improvements made to the test.

But no-one from DWP was available to say whether Grayling welcomed the rise in the number of disabled people being found not fit for work.
Miller defends firms queuing up to deliver PIP assessments

The minister for disabled people has defended plans that will see huge private sector companies fighting over contracts to carry out the new medical assessments that will determine disabled people’s eligibility for vital benefits.

Maria Miller was speaking at a meeting of the all-party parliamentary group on disability (APPDG), just four days after the Department for Work and Pensions published a list of the companies that are set to be approved to bid for the contracts.

Although the companies that have been approved will not be confirmed until 30 April, the preliminary list does include Atos Origin, which has faced widespread and angry criticism from disabled people over its delivery of “fitness for work” tests for the government.

The contracts to carry out the new assessment for the personal independence payment (PIP) – the replacement for working-age disability living allowance – have been split into four regional “lots”, with a fifth covering the whole of the UK.

Seven or eight companies are set to be approved to bid for each of the five contracts.

The companies include private sector outsourcing giants such as G4S – which sent its head of public affairs to the APPDG meeting as an observer, and is better known for providing security services – Capita, Vertex and Serco.

But Rahel Geffen, chief executive of Disability Action in Islington, warned Miller of the “horrific experiences” disabled people had had with Atos, and said she was shocked that the government was now giving the go-ahead to companies like G4S and Vertex.

She said: “I don’t care how good an occupational therapist is, if they are employed by these companies, I really think I have a problem telling service-users they are safe in the hands of their PIP assessors.”

Miller insisted that the use of such companies was “quite a usual way of doing things” and that “the only people who will carry out the assessments are people who are qualified and have the right training”.

She said that many of the companies that have “put themselves forward as part of the procurement process” already provide services in the health sector.

Geffen said after the meeting that she feared the process of contracting different providers would make it harder to hold companies to account for their performance in delivering the assessments.

Anne McGuire MP, Labour’s co-chair of the APPDG, had led a minute’s silence at the meeting in memory of Lord [Jack] Ashley, who died on Friday. Jack Ashley set up the group in 1969 when a Labour MP, and was its chair for 40 years.
DWP questioned over DLA analysis failings

The Department for Work and Pensions (DWP) has been unable to produce any evidence to show that it has analysed the knock-on effects of its huge cuts to spending on disability living allowance (DLA).

Last week, a Disability Rights UK (DR UK) report, Impact Assessing the Abolition of Working Age DLA, said the government had ignored the effects on disabled people’s lives of cutting working-age DLA spending by 20 per cent, or £1.4 billion a year by 2015-16.

DR UK accused the government of an “irresponsible” failure to carry out a proper analysis of these knock-on effects, particularly on people’s ability to work, and their increased need for support from local councils and the NHS.

Both DR UK and the disabled Labour MP Dame Anne Begg – who chairs the Commons work and pensions committee – raised further concerns this week about the government’s failure to measure the wider impact of its programme of cuts.

The Department for Work and Pensions (DWP) insisted that it did not agree with the findings of the report, or the methodology used by DR UK to produce its figures, which focus on DWP plans to cut spending and replace working-age DLA with a new personal independence payment (PIP).

A DWP spokesman argued that it could not yet say how many current DLA recipients would lose or gain from the reforms because this would “depend in part on where the benefit rates are set”, while he said that a higher proportion of claimants would probably receive the highest rates of PIP than under DLA.

But DWP has so far been unable to point to a single piece of evidence that it has assessed the wider impact of its DLA/PIP spending cuts.

Neil Coyle, DR UK’s director of policy and campaigns, questioned Maria Miller, the minister for disabled people, about these failings at this week’s meeting of the all-party parliamentary disability group.

Miller said: “If [disabled people] are in fear of losing work then perhaps they should be looking to Access to Work (AtW) to give them support as well.”

And she said that the government would always produce “impact assessments” of its policies but that they had to be “about the impact that you can measure”.

Coyle said later that this was “quite a frank admission” by Miller that her government was not examining disabled people’s “equality of opportunity”.

He said Miller was “ignoring the real risk to disabled people in work”, and that there was no chance that the AtW budget could cope with the thousands of disabled people set to lose their DLA support.

Dame Anne – who is recovering in hospital in Scotland from a serious accident – said the government needed to look at the wider impact of its cuts, not just to DLA but also to spending on social care, employment and support allowance (ESA) and the Independent Living Fund.

She said that those losing DLA might also be losing ESA and council-funded social care, and there was an “urgent” need to investigate the impact of all of the cuts on disabled people.

Dame Anne added: “I think it is quite urgent that the government starts to quantify that because it could be that for some individuals and households all of the money they were depending on to allow them to live an independent life has been taken away because they lose all the different packages of support they were getting.”

Asked whether DWP could point to any evidence that it had assessed the knock-on effects of the DLA cuts, the DWP spokesman said only that PIP was “intended to go to those disabled people who are least able to live independently and need the most support” and that it does not expect an increased need for NHS or local authority support.

He added: “We will continue to work with the Department of Health and local authorities to understand the impacts and ensure that disabled people continue to have access to relevant support.”
Transport challenge sets standard for transport companies

Four young people have spent four days travelling more than 800 miles around Wales on public transport, to raise awareness of the barriers they and other disabled people face.

The “All Aboard” Transport Challenge was part of the 40th birthday celebrations of Disability Wales, the leading disabled people’s organisation in Wales.

Although there were few major problems, the event had been sponsored by the transport company Arriva, so its staff were aware in advance of the route.

But the four travellers were still able to highlight a number of areas where access could be improved.

The four young people, all members of Pembrokeshire Young Voices for Choices, started their four-day challenge in Haverfordwest on Tuesday 17 April, and visited towns such as Shrewsbury, Wrexham, Bangor, Aberystwyth and Carmarthen, before returning to Haverfordwest.

There was also an unscheduled trip between Carmarthen and Swansea, which again passed off without major problems.

One of the four, Sian Jones, a wheelchair-user from Goodwick, said the four days had gone better than expected, with helpful staff, but she said she had hoped for “more of a challenge”.

Among problems she encountered, she twice experienced train staff addressing her personal assistant (PA) rather than talking to her directly, while there was often luggage blocking the wheelchair spaces on both trains and buses, train toilets were not big enough for both her and her PA, and bus timetables were hard to read and understand.

Jones stressed that the comparatively problem-free four days did not mean there were no improvements needed to access on public transport.

She said: “I have thought [on previous occasions] that I was going to be stuck on the train because they had forgotten about me. They have forgotten to book me in and forgotten to put the ramp out for me to get off.”

Rhian Davies, chief executive of Disability Wales, said: “Overall, it was a positive experience but they have previously had difficult experiences travelling on public transport, or have even avoided using it altogether.”

She added: “We ended with a celebratory event at Haverfordwest and a representative from Arriva Trains Wales was there taking notes.

“There has been quite a big investment in the infrastructure and train and station improvements but he recognised that there was still work to be done on staff attitudes and staff training.

“It was good that they had a good experience because it shows that it can be done and doesn’t take a huge amount of effort to get it right.

“If it can be done for these four then it should be done for any disabled person travelling any time anywhere by public transport.”

Disability Wales will now meet with Arriva Trains Wales to discuss issues that arose from the event, and also hopes to meet with Carl Sargeant, the Welsh government minister for local government and communities, and members of the National Assembly’s new cross-party group on disability.

As another part of its 40th anniversary celebrations, Disability Wales is producing The Story at 40, a film funded by the Heritage Lottery Fund that will record the experiences of Welsh disabled people who were born in 1972.
Jack Ashley: Tributes paid to ‘trailblazing’ MP and peer

Tributes have been paid across the disability movement to Lord [Jack] Ashley, the UK’s first deaf MP and a hugely committed campaigner for disability rights for more than 40 years, who died on Friday (20 April).

Many spoke of his fearsome campaigning skills, his commitment to the rights of disabled people, and his personal charm, while he was once described by Labour’s Gordon Brown as “a shining beacon for honour and decency”.

Others highlighted his vital contribution to breaking down the barriers to disabled people’s participation in public life.

Jack Ashley lost his hearing in 1967, soon after being elected as a Labour MP, and would have resigned but was urged to stay on by the Labour prime minister, Harold Wilson.

Ashley learned to lip-read, and rebuilt what had been a promising political career – with the support of his wife, Pauline – working as a profoundly deaf MP for 25 years, before partially regaining his hearing through a cochlear implant after he had retired as an MP and been made a Labour peer.

Jack Ashley was prominent in a string of high-profile campaigns on behalf of disabled people over four decades, both as an MP and later as a member of the Lords.

One of the most successful was his parliamentary and public work to fight for compensation for people born with impairments caused by their mothers taking the drug thalidomide while pregnant in the late 1950s and early 1960s.

Guy Tweedy, a thalidomide survivor and a leading disabled activist himself, said: “He was a great inspiration for disabled people and for thalidomide victims in the UK. He was one of my heroes.

“Jack Ashley has a special place in our hearts because he brought it to the attention of the nation. He put pressure on the government and on Distillers [the company which marketed the drug thalidomide in the UK]. His contribution was massive.”

Tweedy points to a parliamentary debate in November 1972, which opened with Ashley describing Distillers’ efforts to avoid paying decent levels of compensation for 10 years as “a shocking example of man’s inhumanity to man, not to mention this firm’s inhumanity to the children”.

The MP went on to describe the company’s behaviour as “a grave national scandal, a display of moral irresponsibility which has seldom if ever been surpassed”.

As a result of working on Alf Morris’s ground-breaking chronically sick and disabled persons bill, Ashley had set up the all-party parliamentary disability group (APPDG) in 1969, which he continued to chair until 2009, then becoming its president.

He was the first MP to raise the issue of domestic violence in parliament, and campaigned for subtitling of television programmes, and for winter fuel payments for disabled people under 60 with high support needs.

He also played a leading role in pushing for disability discrimination legislation, introducing his own private members’ bill in 1983, paving the way more than 10 years later for the first Disability Discrimination Act.

More recently, he twice introduced another private members’ bill in the House of Lords, this time to try to guarantee disabled people a legal right to independent living. The bill won support in the Lords, but failed in the Commons because of government opposition.

Liz Sayce, chief executive of Disability Rights UK, which provides administrative support for the APPDG, and supported the independent living bill, said Lord Ashley had “transformed politics and placed disabled people’s right to choice and control at the very heart of the political debate”.

Lord Ashley’s fellow disabled peer, Baroness [Jane] Campbell, said she was “deeply saddened” to learn of his death and would “miss him very much”.

She worked with him for more than 25 years on numerous disability rights campaigns, and took over from him as co-chair of the APPDG in 2009.

She said: “He always understood what we were trying to achieve and did everything in his power to push our agenda hard in parliament.

“He was the most effective MP – and then Lord – I have ever met. I suspect this was due to his combination of personal experience of disability, political astuteness and wonderfully persuasive manner.

“He inspired me to take my knowledge and experience into the belly of the beast to fight alongside him and supported me every step of the way.”

She and Labour MP Anne McGuire, her APPDG co-chair, said later in a statement: “By speaking out powerfully against discrimination and neglect and campaigning for an equal society, Jack changed the lives of many disabled people and enabled them to lead fulfilling lives.

“Thanks to his efforts, human rights and non-discrimination legislation and measures to end disability poverty were introduced, whilst he raised a greater awareness of disability equality across the whole spectrum of government policy.

“As a deaf parliamentarian he paved the way for disabled people to become leaders and spokespersons in our democracy. He demonstrated that it is often a matter of attitude to break down barriers to political participation.”

Disabled activist Nick Danagher first met Ashley when he was visiting one of the first “integrated” schools – at which Danagher was a pupil – and said he made a “huge impression” on him and remained a “massive influence”.

He said: “We were used to having the great and the good visiting the unit but he would talk to people on an equal basis, telling us that our school was really important because of its modern approach.”

In later years, Danagher met Ashley several times as a disabled activist and found him “really charming and a really good communicator”.

“He could talk to disabled people with great credibility but he also got listened to by ministers. He was a great orator and sometimes great orators will appear very insincere, but you believed that he really truly believed what he was saying.”

He added: “He was on the inside of the establishment but still very much one of us. I think he was part of the movement. He brought that sort of statesmanlike authority to our messages about the need for legal rights, and not just for people to be nice to us.”

The disabled Labour MP Dame Anne Begg said it was the example of Jack Ashley that convinced her that she could become an MP herself.

Ashley, she said, was “a trailblazer” who had convinced the Commons authorities that he needed things done differently and that “there was not just one way of doing things”.

“I thought that if he and David Blunkett could do it, I could do it.”

She said that Ashley “would not take no for an answer”, but was also “a lovely, lovely man”, and someone who managed to build a cross-party consensus on the need for disability rights legislation.

She said it was his personal experience of disability that gave him the “edge” over other MPs who campaigned on disability rights, such as Alf Morris and Tom Clarke.

Lord Ashley was also vice-president of the National Deaf Children’s Society. The charity’s chief executive Susan Daniels said he was “a passionate advocate for deaf and disabled people” and an “inspirational figure”, and had left behind a “truly great legacy”.

News provided by John Pring at www.disabilitynewsservice.com

Author: PhilFriend

Dr Phil Friend (OBE FRSA) himself a wheelchair user, is acknowledged as the UK’s foremost consultant on disability matters. A powerful and highly popular communicator, his company – Phil & Friends – provides consultancy to many of the country’s best-known companies. In addition to his professional activities, he is also a respected champion for equal opportunities and diversity in general, where his special blend of humour and direct speaking has won admirers from around the world.

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