Fighting for a life

Disabled people are finding it harder and harder to secure the support they need to live independent lives. Most campaigners believe the system is in crisis. John Pring investigates

Three-quarters of local authorities restricting social care support to those judged to have “critical” or “substantial” needs.

A young disabled woman who has to pay more in charges than she can keep for herself from her wages. Older people humiliated by exhausting assessments of their ability to pay charges for their care. Other disabled people forced to cut back on food, visiting friends, heating and even buying Christmas presents because of the charges they are forced to pay. Some forced to the point of suicide because of threatened charges and the lack of support. Others having to pass up new work opportunities because they fear losing their meagre package of support if they move to a different local authority area.

There is broad agreement across the disability movement that the entire social care system is in crisis, and that the picture is looking worse by the day.

Sue Bott, director of the National Centre for Independent Living, says her organisation hears horrendous stories every day from disabled people struggling to live independently. “It’s absolutely crap out there,” she says. “People are having to live the most awful lives. We want the government to recognise the dire effect on people’s lives that the current system of funding and charging is having.”

As Baroness [Jane] Campbell (pictured) said in a speech at St John’s College, Cambridge, in April: “Whilst our politicians have adopted the language of the independent living movement, users receiving services are lucky to get anything extending beyond being washed and fed.”

James Elder-Woodward, chair of Scope’s Independent Living Zone think-tank, says the situation is much the same in Scotland. “So-called ‘free care’ is really only available to a few old people, mainly living in residential care. The vast majority of others, including all disabled people, are being charged through the nose for social care.”

And Scotland is actually more “backward” than England in its provision of direct payments to disabled people, he adds.

The problems with the system of social care support for disabled people are many and varied. Key among them is, of course, the lack of funding and the charges many are forced to pay, depending on where they live.

Claire Glasman, of the disabled women’s group WinVisible, says many disabled people assessed as needing services in Camden, north London, have stopped receiving them because of unfair charges. “A lot of people have dropped out because they do not want the means test or are worried about how much they will be charged,” she says.

A report published last month* by the Coalition on Charging - whose members represent disabled people, carers and older people – found in a “snapshot” survey that 80 per cent of people who stopped using care services say charges played a part in that decision.

Elder-Woodward says: “Local authorities have never funded social care properly, let alone direct payments.” He believes social care should be free at the point of delivery, and paid for by national social care insurance.

Baroness Campbell, meanwhile, says social care should be “a national priority”, with sharply increased investment, potentially “top slicing from the NHS budget”.

She also believes that too much money is swallowed up by the bureaucracy, ironically the same bureaucracy that is used to restrict access to services.

Douglas Joy, a senior solicitor in the Disability Law Service’s social welfare team, has seen an increasing number of disabled people take legal action around independent living issues over the last five years.

“There has always been a resources problem, but it is getting tighter because local authorities are changing their eligibility criteria,” he says. “They are moving the goalposts.”

Anne Pridmore, former chair of the United Kingdom’s Disabled People’s Council and now chair of Scope’s engagement and influence committee, goes further. “I have grave doubts about individual budgets,” she says. “I have a horrible feeling that it is a cost-cutting measure.”

Another key difficulty is that packages of support are attached as if with glue to a person’s home area. If a disabled person wants to move to a different part of the country, they face yet more gruelling “assessments” and the risk of being given a less generous package.

In May, Baroness Campbell tabled an amendment to the government’s health and social care bill. “The freedom of movement of disabled and older people is entirely dependent on whether or not a local authority social services will agree to take over your support,” she told the Lords, and said the flaw was causing “serious human rights violations”.

She says disabled people also need “a high degree of control” over how and when support is provided. And that requires an infrastructure of third sector and grassroots organisations providing advice, information and advocacy.

Pridmore agrees. “It can be daunting for people who have never had to manage their own budgets, some of whom find themselves employers when never having been employed themselves.” That support, she says, should be provided by organisations of disabled people.

Replacing PAs can be particularly tough, she says. “Once you are through the six-month period it is virtually impossible to get rid of people. As an employer of personal assistants you feel on a roller-coaster between dependency and empowerment and it becomes a balancing act.

“When the relationship breaks down for whatever reason, you need to have independent support to carry out disciplinary procedures. There needs to be a change in employment law which recognises the unique relationship whereby the employer is also the recipient of the service.”

Some service-providers have their concerns, too. One is around the risk of allowing unregulated and unregistered self-employed PAs into the homes of “vulnerable” disabled people.

Colin Angel, head of policy and communications at the United Kingdom Homecare Association, says: “It really does worry me. There are considerable concerns from the majority of providers. It is genuine concern for the people who use services.”

But NCIL’s Sue Bott says that, just because someone is disabled, doesn’t mean they are necessarily vulnerable. “You start by listening to the person who is using the services and you make absolutely sure that the right level of support is there. It is not acceptable for a local authority – and I know they do this – to give people a direct payment and say, ‘Now you are out of sight, out of mind.’”

When that happens and abuse is alleged, she says, staff often “charge in like the cavalry” and the service-user ends up in residential care. Good safeguarding policies have to be balanced and informed by the voices of disabled people, she says.

So what is the government doing to allay these concerns?

In March, it launched its independent living strategy, which talked about personalisation, choice and control and acknowledged “a gap between national policy and people’s real experiences”. The strategy received a generally warm welcome, but was described by RADAR as “largely a summary of existing initiatives” with “no sign of the radical reform programme disabled people want”. It was also criticised for not including an immediate commitment to new legislation.

As RADAR says: “Waving a strategy at a care manager who wants to cut your package is not going to cut it.”

However, the strategy does include a pledge to conduct a disability equality impact assessment of council charging policies and the government’s own recent incapacity benefit reforms.

And in May, the government launched a six-month consultation on the future shape of the social care system and how it should be funded.

There is also much activity among campaigners and activists.

There is the independent living bill, first put forward by Lord Ashley in 2006, which was due to receive its second reading in the Commons as Disability Now went to press.

And many campaigners hope disabled people will increasingly use the Human Rights Act to secure a right to independent living, and the disability equality duty in the Disability Discrimination Act, which has already been used in two London boroughs to fend off council plans to restrict funding and access to support.

There is also the UN Convention on the Rights of Persons with Disabilities, which, if ratified by the UK government, could give disabled people a further tool to secure independent living as a human right.

One of the Equality and Human Rights Commission’s priorities this year is to influence the government on the future of social care provision.

And last month, the Our Lives, Our Choices coalition of disabled and older people and carers – which includes NCIL, RADAR, Scope and Mind – held a lobby of Parliament to call for, among other things, the introduction of the independent living bill, a statutory right to independent living and urgent action on the social care crisis (see picture, page 33).

Meanwhile, the Coalition on Charging has called for a thorough review of the impact of charging and a reassessment of the contribution care services can make to achieving national government goals such as inclusion, equality and reducing poverty, and for the government to bring forward the equality impact assessments of charging policies.

Chris Brace, director of campaigns for RADAR, says the government must start looking at spending on social care support as an investment, and a means of “enabling people to live their lives and achieve what they want to achieve” and “live safely and independently in their own homes”.

But he adds: “I really think there needs to be a recognition that more funding is needed to achieve full rights to independent living. You have got to pay for it.”

Bott is optimistic that the government can be persuaded. “People may not be out on the streets, but MPs are getting to know these things through their constituency postbags. There is every reason to think that in the end the government can be persuaded to see things our way. I think there is everything to fight for.”

*Charging into Poverty? Copies from www.ncil.org.uk

**No-one from the Association of Directors of Adult Social Services was available to comment on this feature

INDEPENDENCE DAZE

DAVINA

Davina*, who needs 24-hour support, applied in March 2005 to Ealing council for an increase in the money she received as direct payments, as it wasn’t enough to attract and retain good PAs.

But the council did not increase her payments until May 2006. It also failed to communicate with her properly or acknowledge that she could have received all of her support via direct payments.

Davina says the council’s actions left her feeling suicidal, and took her case to the Local Government Ombudsman, which found in her favour and said the extra money would have made a significant difference to her quality of life.

The council agreed to pay Davina £16,700 compensation.

*Not her real name

JAMES ROSE

James Rose has been on direct payments for three years. PAs help him with everyday tasks.

But since returning from university in Cornwall to Hampshire last autumn, even though his needs have not changed, he has had new assessments by both Hampshire County Council and the Independent Living Fund. He has also had to argue with Hampshire that he still needs 24-hour support, while the council at one stage told him social activities should not be included in his package.

James wanted to return to Cornwall to set up a PA agency for disabled people, but partly due to fears of yet another gruelling assessment, he has decided against the move.

He is still in dispute with Hampshire about his package.

JJ

JJ* was pressured to pay charges she couldn’t afford for the homecare she receives from Camden social services.

The council introduced a new means-testing policy for all older and disabled users of homecare last year.

JJ, who comes from an Afro-Caribbean background, receives two hours of support a day as well as help with food shopping, which she pays for with direct payments.

She had written to Camden several times to ask for a review of her charges, because she said they had overcalculated her income and undercounted her expenses.

With backing from WinVisible, she lodged an official complaint. In March, the council agreed that her support would remain free.

JJ said: “For six months, the stress I was under rose so high that I was in great pain from my condition all the time. They say they are helping you, they say they are committed to diversity. They say one thing – then do the other.”

*Not her real name

• To find out more about the campaign against charging, email winvisible@allwomencount.net or tel: 020 7482 2496 (voice and minicom), or email Camden’s Campaign Against Care Charges at cacc@googlemail.com or tel: 07528 841 614

BARBARA

When Barbara*, who is disabled and receives direct payments, was caring for her terminally-ill husband, she had to be admitted to a hospital 100 miles from home.

She informed Norfolk social services and arranged a live-in care worker for her husband. Two days before she was due to be admitted to hospital, social services cancelled her arrangements as they were too expensive, and said her husband would have to be admitted to a care home, leaving her no time to inspect it. Barbara had to “dash round and get friends and relatives to step into the breach”.

Instead of the planned six weeks rehabilitation in hospital, she came home after eight days and became her husband’s main carer again.

In 2005, the council suddenly started to charge for the care her husband received and sent the couple a bill for £3,000 arrears, and refused to reassess them.

When Barbara refused to pay, the bill kept rising until it hit £8,000. She was so angry she was ready to go to prison.

Eventually, court orders to pay the arrears were cancelled and Barbara was told the original assessment had been wrong and she was actually owed £194. Barbara says the council’s behaviour was “appalling”, “high-handed” and “uncaring”.

Norfolk was one of the original pilot areas for direct payments and at first was “brilliant”, she says. But since then support has been “whittled back and whittled back and whittled back”.

*Not her real name

DAVID

David* receives a package of 46 hours support a week from his London borough council, and has been on direct payments for about seven years.

He says direct payments have been “a step forward” and “beneficial” in helping him live a more independent life.

He has had no problems with the size of his support package, although he has heard that people who need 24/7 support have had to fight for the package they need.

He says direct payments have allowed him to choose who he wants to support him and when he wants them to work.

But David, who works for the disability charity Scope, feels there should be more assistance to help with recruitment, contracts and paperwork, managing staff and training. The council organises daytime meetings of direct payments-users but they clash with his work commitments.

He also thinks the assistance should be more proactive. “It feels as though you are given everything but then you are left out in the cold,” he says.

*Not his real name

THE GOVERNMENT’S RESPONSE:

A Department of Health spokeswoman said: “We have already set about reforming the social care system by giving more money and more personal control – an extra £520m to support councils to radically transform services whilst giving the vast majority of people who receive funded care their own personal budgets so they can choose the support services they want for themselves or a family member.

“We appreciate the need for radical reform, which is why last month Government launched a debate about how we can fund care and support in a way that is affordable and fair in the future.”