The government says it is committed to giving disabled people greater independence, but in reality progress is stifled by red tape and severe funding shortages. Andrew Cole on how a radical new bill aims to address this…

The idea of independent living is something of a hollow joke for former teacher Ian Jacobs. Incapacitated by a stroke two years ago, he was promised a care package involving a visit from care workers three times a day. But then, with no warning, this was cut to just one visit each weekday.

As a result, says Jacobs, he became almost a prisoner in his own home. Without the necessary help, he was unable to get out and about and had to rely on a friend to do his shopping. At weekends, with no care visits, he often stayed in bed because there was “nothing to get up for”.

“I’d just like more contact with human beings, more control over my life and more choice over what I eat and buy,” says Jacobs, who lives in Desborough, Northamptonshire, and has recently moved into sheltered accommodation to try to ensure more support. “In theory everyone’s committed to independent living. But in fact they’re committed to keeping people in jobs.”

In theory, of course, everyone is an enthusiastic supporter of independent living. One of the main planks of the government’s Life Chances report, personally endorsed by Tony Blair, is the commitment to help disabled people live independently “at home, at work and in the community” by 2025. The white paper on shifting care to the community, Our Health, Our Care, Our Say, is positively evangelical about giving users greater control over decisions that affect their lives.

Yet the reality for hundreds of thousands of consumers of social care is depressingly different. The Disability Rights Commission (DRC) labels the current system a “cat’s cradle of costly red tape” in which individual needs are all too often ignored. A £1.8bn black hole in social care budgets has served to make an unsatisfactory situation worse, leading to further restrictions on eligibility criteria and ensuring seven out of 10 disabled people receive support only if their needs are seen as “critical” or “substantial”.

This is the background to Lord Ashley’s groundbreaking disabled persons (independent living) bill, which is currently at committee stage in the House of Lords, having received an unopposed second reading in July. An unashamedly radical document, the bill seeks to build on the foundations laid down by the Disability Discrimination Act (DDA) by spelling out the basic principles of independent living and the steps required to achieve that.

These include:

· Everyone to have choice and control over their living arrangements, include a right not to be placed in residential care against one’s will;

· pooled budgets among all agencies involved in providing care for disabled people;

· an extension of the definition of disability to include people with sensory impairments, mental health problems and chronic conditions;

· a right to advocacy or support from a nominated friend; and

· new rights for carers.

The bill’s supporters claim it does little more than create the legislative framework needed to implement the pledges made in the Life Chances and white paper strategies. But although ministers have publicly supported its principles, they are privately sceptical about the practical implications. In particular, they must be concerned about the open-ended commitment the bill would give to disabled people, the rapid timetable for action and the consequences of pooling health and social care budgets – something the Department of Health would strongly resist.

Many, moreover, will think that the bill’s enormous widening of the definition of disability – which by some estimates could encompass more than a third of the population – is simply unworkable.

It was surely no coincidence that the government announced its own 12-month review of independent living just hours before Ashley’s bill was due to receive its second reading. The move didn’t undermine the measure, but it is now certain to run out of time when this parliamentary session ends. However, according to the DRC, this will simply be the prelude to its reintroduction later this year and its probable translation into a private members’ bill next year.

Many disability campaigners see the DDA, which took 18 attempts before it finally became law, as the inspiration for the coming battle. “We have established a huge consensus around these principles,” says DRC parliamentary officer Caroline Ellis, “so we are now able to say to government: ‘This is what people want.’ We’re quite optimistic that in a couple of years something like this could be on the statute book.”

The DRC accepts that the new legislation would need a fundamental restructuring of health and social service and extra money, in the short term at least. But the commission points to huge inefficiencies in the current system: it suggests, for example, that reforms of housing and planning law with respect to disability could deliver more than £100m in savings. Moreover, creating conditions that would allow more disabled people and their carers to stay in work could provide an incalculable boost to the country’s economy.

At heart, though, this is a moral argument, with campaigners stressing that the way many disabled people are treated is unacceptable and has to change urgently. “People are living very restricted lives, and the government is saying we might get around to you in 15-20 years’ time,’ says Sue Bott, strategic director at the National Centre for Independent Living (NCIL). “That’s great if you’re still alive, but what do [you] do about those lost years?”

Campaigners’ impatience is fuelled by the fact that in some areas disabled people are already being helped to lead remarkably independent lives. Direct payments, which give users control of the services they receive, have already offered thousands of disabled people a taste of that independence. But the really transformational change could come through “individual budgets”, currently being piloted in 13 councils around the country.

As proposed in the Life Chances report last year, individual budgets pull together a far greater array of different funding streams than direct payments. Following a single assessment, the total fund is then made available for individuals to manage themselves or to be administered on their behalf.

But the biggest difference is the new flexibility in how that money is spent.

“The key is putting the individual at the centre of the planning process and actually recognising they are best placed to understand their own needs and how they are going to be met,” says Katy Murray, individual budget project manager with Essex county council. Traditionally, local authorities have been inclined to offer disabled people services that already exist – and that still applies with direct payments. “But individual budgets show a willingness to explore things in a really different way.”

For many disabled people, their priority may not be home help or meals-on-wheels, but having access to transport, getting in and out of their house or even going away on holiday, Murray says. “What we’re doing is encouraging people to think about the whole of their life and saying it’s OK to use the budget to overcome those barriers.”

The Association of Directors of Social Services supports much of the independent living bill but, warns Jeff Jerome, co-chair of its disabilities committee, the measure’s aspirations will always be subject to rationing. So, while most social care staff would support the principle that people should not be moved out of their own homes against their wishes, “where it gets difficult is, if to remain in their own home would cost four times the cost of what’s provided by a residential home, how will that be funded?”

Jerome admits: “For most local authorities, there will usually be a correlation between what they’re prepared to spend on home care and what they could spend if someone was in residential care. While they’d support people living at home, most local authorities will not do it irrespective of cost.”

According to the NCIL’s Sue Bott, however,the biggest challenge to independent living may lie with professional attitudes rather than funding or structures. “Many social care professionals still have an overwhelming concern with risk and assumptions about what disabled people can and can’t manage. Part of that comes from people’s professional training, which is out of date with disabled people’s aspirations.

“Many professionals want to hang on to their territory and power. We are going to need a huge cultural and attitudinal shift. But of course that would be much easier to bring about if they didn’t have their backs against the wall, as a result of the present cutbacks.”

Case study 1: A taste of independent living

When Julia Winter was first asked about taking part in the individual budget pilot in Essex, she was sceptical. After a dreadful time when she was first disabled with myopathy and brittle asthma, she was put on to direct payments in 1997 – a change that transformed her life. Indeed, she appeared in SocietyGuardian less than three years ago, extolling their praises.

After two months with an individual budget, however, Winter is a convert. “When I became disabled, my life shrank right down. With direct payments I felt the box had opened up. But with a living budget, I feel I’m getting out of the box and being able to do what I want.”

Individual budgets introduce an unheard-of degree of flexibility into the often-regimented world of social care. There is flexibility in the way the weekly pooled budget is managed, but also, critically, in how it is spent.

So, for instance, by reorganising her arrangements to enable her husband to take on some of her personal care, Winter was able to free up enough money to buy an air conditioning unit for one room – an acquisition that has had a dramatic impact on her asthma. “By itself that has already prevented me going into hospital on at least four occasions in the last month, which is one of the criteria that social services use when they assess you,” she says.

Winter, who lives in Chelmsford, has also been able to make her house wheelchair-accessible after being given the money to buy her own ramp. Previously she had faced a succession of occupational therapy assessments, the final one of which advised her that the only solution was to move home.

But once given the £500 that social services would have spent on the equipment, she was quickly able to find a plastic ramp that met her needs and cost only £350.

Individual budgets have eliminated the “them-and-us” culture in social care, Winter believes. “You now feel you’re working in partnership with social services and you’re working together to achieve a common outcome.”

Case study 2: Dependent living

To be blind, disabled and to have sole responsibility for a 13-month toddler is tough in the best of circumstances. But for single parent Beth Keeley, it became a “living nightmare” because she was left without any social care support for two years.

Her problems began when she moved from Norfolk, where she had been getting daily help with cooking, cleaning and shopping, to Ewhurst in Surrey. She had been promised a similar package of care there – but it never materialised.

Since moving, she has had a baby, endured a lengthy hospital admission and seen her own health deteriorate. But despite the fact that she was categorised high priority, and repeatedly promised a care package, nothing happened.

The lack of home help posed serious practical problems. Although Keeley attempted to clean her house regularly, she couldn’t be sure she’d succeeded. “Yesterday I dropped a glass and I can’t see whether I’ve found all the pieces,” she says. It also meant she had to keep her son in touching distance at all times for fear of what might happen when he was out of her range. And outside the house, she had difficulties getting around while handling both a cane and a buggy.

The care she received in Norfolk was itself fairly basic, amounting to eight hours a week. But despite complaining to Surrey county council, and contacting her MP, not even that was replicated – until SocietyGuardian spoke to the authority.

In a statement, Surrey apologised for the “regrettable” delays and said that a 10-hour support package was being put in place for Keeley, together with five hours’ nursery care for her baby son.

Andrew Cole
Wednesday September 13, 2006
Guardian