What price independence?

Those of you who know me reasonably well will know that I’m a bit of a petrol head. I simply love driving! I know that’s not terribly cool theses days given the effects on the planet, but I blame my obsession on the fact that I’m a wheelchair user and as a result, I love the freedom that driving gives me.

In my time I’ve driven some pretty incredible motors. My journey started way back in the 1960’s with the appropriately named Tippen Delta 2 a three-wheeled invalid carriage supplied by the then Ministry of Health which preceded the Motability Scheme. I managed to overturn my aptly named “Tippen” on several occasions. These vehicles were primitive, unreliable and eventually banned from Britain’s roads in 2003 as they were deemed to be too dangerous! Those of us who survived this unique driving experience used to wonder whether this was a secret initiative designed to reduce the population of disabled drivers!

Picture of a Tippen Delta 2 invalid carriage
Tippen Delta 2 1962

After seven years of crashing around in invalid carriages, I bought my first “proper” car a used two-seater sports car the MG Midget; a Porsche-engined VW Beetle followed, then a Saab Aero. I ended this extravagant period of my life with a BMW 5 Series, a Mercedes E class estate and finally a Range Rover!

The invalid carriage was an ill-equipped, unreliable and dangerous vehicle but I loved it. I still remember the pleasure and excitement of being able to go out when I pleased; I could go where I wanted and most of all I had control and choice. The Range Rover provided all of the same benefits but with leather seats!

As I’ve got older and my physical abilities have waned I’ve moved from walking on crutches to using manual wheelchairs and now to powered wheelchairs. This physical deterioration has had a profound effect on what vehicles I am now able to drive. The observant among you will quickly realise that you can’t fit a large powered wheelchair into most saloon cars. My solution has been to use wheelchair accessible vehicles (WAV) supplied via the Motability Scheme. So the wheel has turned full circle!

MG Midget Sports Car
MG Midget Sports Car

The Motability Scheme is a far cry from the old invalid carriage days and has provided complete driving solutions to hundreds of thousands of severely disabled people for years; incidentally, they celebrate their fortieth anniversary in May.  I’ve variously leased through the Scheme a Chrysler Voyager, a VW Transporter and currently a VW Caddy. All accomplished, reliable vehicles but not quite BMWs although the costs including adaptations are not that different.

For many severely disabled people, their only real option for independent travel is the Motability Scheme, but the government’s recent changes to the benefits system are having a profound negative effect. Since 2013 51,000 people have had to return their Motability vehicles because they failed to satisfy the new criteria used to qualify for higher rate personal independent payments (PIP). It is estimated that the final figure will be closer to 150,000 returned vehicles. What lies behind these numbers are individual human stories. Disabled people are potentially losing their jobs because they can’t get to work, being prevented from seeing family and friends, stopped from going on holiday, reliant on others for medical appointments, shopping and leisure pursuits.

The Motability Scheme plays a vital role in ensuring that disabled people can live independently. For many of those who use the Scheme, it is the only way they can afford to lease an appropriate vehicle for their level of impairment. The draconian measures being used to reduce the benefits bill are having a devastating and disproportionate impact on the lives of many disabled people, for those who rely on PIP in order to fund their personal transport, the future looks very bleak indeed.

It’s one thing to have less money to spend, most of us have been through that,  it’s quite another to also lose your ability to live independently.

 

Services or Swervices?

Over the past few weeks, I’ve become increasingly concerned about the struggles that some disabled people seem to have when using or accessing the most basic customer service.

Let me explain; the Guardian recently published a story about Anne Wafula Strike, a Paralympian wheelchair user who was forced to wet herself on a train because the accessible toilet was out of order. (http://bit.ly/2jw0Xzz) A few days later I came across the story that Frank Gardner, a wheelchair user and BBC journalist, had been left on a plane because the equipment needed to help him disembark was delayed. (http://bit.ly/2jvKYkV) Then Socitm which represents IT and digital professionals in the public sector, published research which revealed that one-third of website home pages used by local authorities are not accessible to many disabled people. (http://bit.ly/2jvY41G).

I guess these stories are just the tip of the iceberg and that many of you have personal horror stories about the lack of accessible services you’ve encountered.

What troubles me is that legislation was passed back in 1995 that was supposed prevent these difficulties from arising. So what is going on?

Clearly, financial stringencies have a part to play, but I’m not convinced that this is the main reason. I sense that for some service providers disabled consumers are just a nuisance. They think it is less expensive or less complicated to ignore us and hope that by placing more barriers in our way or by making life harder for us, we will go away. Hence the term “swervices not services.”

Am I being harsh or exaggerating the situation? I don’t think so! We have been complaining about the lack of appropriate customer service and access for years; we have eschewed the benefits of inclusive design for decades; we’ve protested, sued and lobbied and despite all this, our concerns continue to be disregarded.

Perhaps there is some light at the end of the tunnel. Doug Paulley’s recent victory in the Supreme Court concerning wheelchair spaces on buses is a pointer to customer service providers that they will have to do more or face serious consequences. (http://bbc.in/2jGj3Bx)

Planes and Boats and the search for winter sun

I’ve just returned from a lovely break in the Carribean. Winter in the UK or somewhere nice and warm? Not a difficult decision! Two weeks cruising on a luxury liner being spoilt rotten sounds like a good idea. Well like everything there is another side.

First you have to get to the Carribean. This usually involves a long haul flight of around eight hours on an aircraft that lacks accessible toilets. One of the fundamental rules of flying long distances is to drink plenty of water. Not advisable if you can’t visit the bathroom. Our flight out to Barbados was nine and half hour long, the seats lacked and any form of adjustment and were extremely uncomfortable. Once we landed I had to wait an hour to be off-loaded from the plane. We were then taken straight to the ship, bypassing customs and the airport terminal toilets; the journey lasted another forty-five minutes. Embarkation took around half an hour, so I went eleven and three quarter hours without using the loo! Much self-control and crossing of legs is the name of the game

Cruise liners are brilliant from an access point of view, and P&O’s ship the Azura is no exception. She has spacious wheelchair accessible cabins with roll in showers,  lift access to all decks, swimming pool hoists making swimming possible for the most severely disabled passenger.

Picture of cruise ships berthed in the Dominican Republic
Cruise ships berthed in the Dominican Republic

The trouble begins when you go ashore. Our ship was able to berth in all the places we visited, so there was no need to use tender boats. To appreciate the Caribbean islands you need to venture inland, unfortunately, very few tour buses are wheelchair accessible. The result is that mobility impaired people are forced to stay close to the port to while away their time in endless identical shopping malls. P & O do provide a list of available tours but on our cruise, the accessible buses that were available only had one wheelchair space. I saw, at least, a dozen wheelchair users so this provision was wholly inadequate. In one location they had provided a shuttle bus to get passengers from the ship to the town. Unfortunately, those people using wheelchairs, but who could walk a little, were refused access because there was nowhere to store the wheelchair. It seemed a little ironic that the very people the shuttle was designed to help were excluded from using it.

I do understand some of the places we visited do not have the resources to provide the kind of accessibility we have come to expect in the UK but what I find puzzling is why P & O won’t do more to cater for the increasing number of mobility impaired passengers. The last straw was we

Sign in St Maarten advertising accessible tours
Sign in St Maarten advertising accessible tours

left the ship in St Maarten to see a kiosk a hundred yards from the port entrance advertising wheelchair accessible tours.

Many disabled people find cruising one of the best ways of taking a holiday, it is possible to see places that you might not otherwise be able to visit. I’d be interested to hear about your experiences so please send me your comments and I will do my best to see they are passed on.

To end on a more positive note the sun shone beautifully, my tan has improved, my waistline has expanded as a result of the food being plentiful and excellent, and we met some fascinating people.

Here are some links to this week’s other news. I hope you find them of interest.

Government agrees four more years of ILF transition cash for councils

Maximus ‘has falsified results of fitness for work tests’, says MP

Anger at Osborne’s working-age benefits freeze

Police duo jailed over failure to protect disabled murder victim

News provided by John Pring at

www.disabilitynewsservice.com

 

 

Independent Living, Sex Workers

Hello and apologies for missing last week’s news. Very sadly my father in law died unexpectedly and as you can imagine we’ve been very preoccupied getting everything sorted out. He was 88 and had become severely disabled during the last four years of his life eventually needing residential care, as his wife was unable to cope physically. Thankfully they were able fund the package of care that he needed but even so we often felt very guilty about not being able to provide him with more. As the government contemplates severe financial cuts I can’t help wondering how others with less financial support will cope. The most frail and vulnerable in our society should expect the rest of us to do everything we can to care for them in their final years. We need to ensure that they and their families receive all the support they so richly deserve.
New centre for independent living leads to loss of two DPOs

Two disabled people’s organisations (DPOs) in Northamptonshire have been forced to close after a total of nearly 50 years fighting for disabled people in the county, following the loss of key council funding.

The loss of the two DPOs has highlighted issues created by the Labour government’s demand for there to be a user-led centre for independent living (CIL) in every area by 2010.

Disabled People’s Alliance Northamptonshire (DPAN) and Ability Northants were both part of a consortium of local charities that bid for the contract to run a new CIL in the county.

But the £500,000-a-year contract was won instead by a DPO from neighbouring Bedfordshire, Disability Resource Centre (DRC).

DPAN also lost out in a joint bid with other local organisations for another £500,000-a-year contract to provide advocacy services for disabled people.

This contract was awarded to the national organisation Advocacy Partners Speaking Up – which is not a user-led organisation – supported by Advocacy Alliance, which works across Bedfordshire and Northamptonshire.

As part of this reorganisation, DPAN lost out on its core funding from Northamptonshire County Council and will have to close, while Ability Northants closed at the end of March.

John Smith, DPAN’s coordinator, said losing traditional DPOs like DPAN would mean the loss of their independent “campaigning, checking role” that ensured councils were held accountable to disabled people.

Smith will probably join DPAN’s disability rights service in transferring to the new CIL, which he said had been “very good in recognising that it is a difficult situation”.

But he said many other user-led organisations that were winning contracts to run CILs were not DPOs, with many controlled by carers and other people “with an interest in disability”.

He said: “The old CILs came from the grassroots. Disabled people developed them and now local authorities are saying they want carers in their CILs. It’s a different animal.

“I think it is really important to retain that distinction, that little word ‘of’ [as in an organisation ‘of’ disabled people, rather than ‘for’ disabled people].

“We didn’t apologise that we were all disabled people. We should be assertive and say that that is the right way.”

Mick Dillon, DRC’s chief executive, said he was a wheelchair-user himself and DRC was “user-led at every level of the organisation”.

He said the new CIL had established a board of service-users to “act as our watchdog”, while 19 of its 20 staff came from Northamptonshire, and none from Bedfordshire.

But he accepted that DRC tried to “work in partnership rather than direct action”.

Dillon said DRC was hugely experienced in running direct payments and personalisation services, and said services in Northamptonshire would be “further improved”, building on DPAN’s work and its “wealth of experience”.

He added: “I am happy to be judged on my results.”

A council spokeswoman said the new CIL would “bring both improved services and a wider range of services than ever before for disabled people in the county”, while “local disabled people, carers and those who support disabled people” would have “a direct involvement” in how the service was run.
Government gives personal budget approval for sex workers

The government has confirmed that it has no objection to disabled people using part of their council-funded personal budgets to pay sex workers.

The confirmation followed the media storm created by the release of a new survey of councils by the Outsiders and the TLC Trust, which both provide advice and support around sex and disability.

The survey found only three per cent of local authorities had a policy on the use of sex workers by disabled service-users, with the same number happy for sex workers to be paid using money from a disabled person’s personal budget or other council funding.

Despite these results, nearly three-quarters of the councils said they had explicitly supported the human rights of disabled people to develop social, personal and sexual relationships.

The Outsiders and the TLC Trust said the survey showed councils were guilty of a “scandalous neglect” of disabled people’s sexual and emotional needs.

The survey was carried out using Freedom of Information Act requests of 206 local authorities across England, Scotland and Wales, of which 121 responded.

Following the survey’s publication, at least three tabloid newspapers published stories critical of the small number of councils that said they did allow disabled people to use self-directed support to access sex workers.

The Department of Health (DH) said in a statement: “Money allocated through Putting People First [the government’s personalisation programme for adult social care] should be used by councils to help people to live independently.”

But a DH spokeswoman added: “The policy is that the decision is taken locally [by the disabled person and the council] on what is best for that person and the personal budget is used in the way that is best for that person.”

Asked whether there was a DH policy that said personal budgets should not be used to pay sex workers, she said: “There would not be. It is not for us to dictate what is best for that person.”

Disability consultant Alex Cowan said: “I believe it is a legitimate goal to want sexual contact and experiences.

“It is unfair not to enable a disabled person to overcome the barriers that a non-disabled person would not face in getting sexual contact.

“Sex can be a very important part of their life, and they are entitled to make choices about what kind of support and assistance they need to have it.”

She said the goal of personalisation was for a disabled person to choose how they spend their limited personal budget to meet their needs.

Cowan added: “Disabled people have to go through a very rigorous assessment process with strong criteria about the goals of their personal budget.

“The story is about what are legitimate quality of life goals, and in my opinion, sex is a legitimate quality of life goal.”

Dr Tuppy Owens, who founded both Outsiders and TLC Trust, said she hoped the survey would encourage local authorities to develop policies on the use of sex workers.

She said managers “like to pay lip service to the idea that their service-users enjoy real choice, empowerment and freedom, so long as that does not actually include sex”.

For more information, visit: www.outsiders.org.uk and www.tlc-trust.org.uk

News provided by John Pring at www.disabilitynewsservice.com

Musings of the Week

Concerns over first government work test figures

The first official figures showing how the government’s work capability assessment (WCA) is working have revealed only a small proportion of those applying for out-of-work disability benefits are “passing” the strict new test.

Of about 175,000 people whose claims were completed between October 2008 and February this year, only about 32,000 –18 per cent – were placed on the new employment and support allowance (ESA).

Of the 32,000, just under a third were placed in the support group, for those who do not have to engage in work-related activity.

But about 69,000 of the claimants were pronounced “fit for work” and ineligible for ESA, while 74,000 stopped claiming before their assessment was finished.

The assessments – carried out by the government contractor ATOS Healthcare – are supposed to test whether someone requires personalised support to find work and so qualifies for ESA, which has replaced incapacity benefit (IB) for new claimants.

The government is to start rolling out the WCA to existing IB claimants next year.

The new figures also reveal that, by the end of August, 4,900 claimants had completed appeals against a decision that they were “fit for work” and ineligible for ESA, but only 1,500 were successful.

Neil Coyle, director of policy for the disability poverty charity Disability Alliance, said the WCA was “too rigid” and often failed to reflect disabled people’s daily lives.

He said the figures suggest the government’s welfare reforms could fail to secure work for many disabled people, which would be “deeply disappointing”.

He added: “The concern is that too many disabled people are not getting access to ESA and are put on jobseeker’s allowance (JSA), where they do not get tailored support.

“Meanwhile, there are less jobs, more competition for work and rampant employer discrimination, particularly against those with mental health problems.”

He said this risks alienating disabled people and forcing them into poverty, as JSA is paid at a lower rate than ESA (up to £64.30 a week for JSA, compared with up to £89.80 for ESA).

Meanwhile, the government has announced a new Fit for Work scheme, which will encourage employers, GPs and councils to help people who become ill at work to manage their condition and stay in their job so they do not end up on benefits.

Ten pilot schemes will encourage local partnerships to pool funds to develop new services, bringing together support in areas such as health, employment, skills, housing and debt advice.
Government adviser ‘wary’ of legal right to independent living

A senior government adviser has dismissed calls for rights-based laws that would give disabled people a nationally-guaranteed entitlement to independent living support.

Dr Steve Feast, a senior health and wellbeing adviser in the Department of Health, said he would be “very wary” of writing such legislation and then waiting for the results to “trickle down” to disabled people.

Speaking in a debate on independent living organised by the disability charity RADAR following its agm, Feast said he was a “strong believer” in giving council leaders discretion in how they spend their money.

And he said he believed there should be a move away from “big government” and towards flexibility, local innovation, “empowered individuals” and a “needs-based approach”.

But Caroline Ellis, joint deputy chief executive of RADAR, said legislation was needed so that “your ability to live a dignified life…to raise your kids, to love, learn, live and work” was not dependent on your local council.

She said such rights were “far too important to leave to local discretion” and that she had been “really struck with the number of people I have met recently who have had their care packages slashed”.

She added: “We are fed up to the back teeth of postcode lotteries and we are certainly fed up of professionals telling us what we need and how we should be living our lives.”

Disability consultant Haqeeq Bostan said disabled people’s organisations need to show they can deliver services themselves, with ring-fenced funding from central government.

Otherwise, he warned, “we will face fundamental cuts in the services we receive, in the support we have and the means to make the choices we want to”.

The motion they were debating stated that the government’s “vision for social care and support” would only be delivered through “rights-based legislation extending national entitlements” and that relying on local decision-making was a “recipe for disaster”.

Only Feast and Hackney councillor Nargis Khan – who also spoke opposing the motion – voted against it, while 25 people voted in favour and there were eight abstensions.

The debate took place just four days before Lord Ashley’s independent living bill – a private members’ bill that would give disabled people a legal right to independent living – was due to receive its second reading in the Commons.
12 October 2009 Government adviser ‘wary’ of legal right to independent living

A senior government adviser has dismissed calls for rights-based laws that would give disabled people a nationally-guaranteed entitlement to independent living support.

Dr Steve Feast, a senior health and wellbeing adviser in the Department of Health, said he would be “very wary” of writing such legislation and then waiting for the results to “trickle down” to disabled people.

Speaking in a debate on independent living organised by the disability charity RADAR following its agm, Feast said he was a “strong believer” in giving council leaders discretion in how they spend their money.

And he said he believed there should be a move away from “big government” and towards flexibility, local innovation, “empowered individuals” and a “needs-based approach”.

But Caroline Ellis, joint deputy chief executive of RADAR, said legislation was needed so that “your ability to live a dignified life…to raise your kids, to love, learn, live and work” was not dependent on your local council.

She said such rights were “far too important to leave to local discretion” and that she had been “really struck with the number of people I have met recently who have had their care packages slashed”.

She added: “We are fed up to the back teeth of postcode lotteries and we are certainly fed up of professionals telling us what we need and how we should be living our lives.”

Disability consultant Haqeeq Bostan said disabled people’s organisations need to show they can deliver services themselves, with ring-fenced funding from central government.

Otherwise, he warned, “we will face fundamental cuts in the services we receive, in the support we have and the means to make the choices we want to”.

The motion they were debating stated that the government’s “vision for social care and support” would only be delivered through “rights-based legislation extending national entitlements” and that relying on local decision-making was a “recipe for disaster”.

Only Feast and Hackney councillor Nargis Khan – who also spoke opposing the motion – voted against it, while 25 people voted in favour and there were eight abstensions.

The debate took place just four days before Lord Ashley’s independent living bill – a private members’ bill that would give disabled people a legal right to independent living – was due to receive its second reading in the Commons.

News provided by John Pring at jpringnews@googlemail.com