User-led organisations a necessity for disabled people to live independently

P24/25 27 March issueThe 2005 report Improving the Life Chances of Disabled People held out the hope of an “opportunity society”, one in which the participation of disabled people was taken for granted. Independent living was to be the centrepiece of this strategy and every locality was to have a user-led organisation (ULO) giving choice, voice and the means of autonomy to everyone who wanted them.

Government timescales are notoriously elastic and there are many who argue that its 2010 deadline for having a fully functioning ULO in each local area will have to be stretched. Given the government’s £520m reform plan to personalise social care over the next three years, this ought to worry more than a few councils. But the evidence, so far, often points the other way.

A research study commissioned by the Department of Health last year found that few localities either had a ULO or an outfit with the immediate potential to become one. Support from local authorities was seen as critical to their success, yet the study found that ULOs were losing service contracts because commissioners frequently didn’t grasp the added value of organisations led by service users. Users, or potential users, are supposed to make up at least 75% of ULO management boards.

The report identified 647 local organisations that could be “or could be linked with” a ULO, though the authors found it difficult to obtain up-to-date information about any of them and a tiny minority will have been able to offer the a la carte menu of services for all impairment groups that the government envisages. Sue Bott, director of the National Centre for Independent Living (NCIL), says that roughly a dozen local CILs, 15% of her membership, have closed in the past two years because they cannot afford to carry on. This is in spite of the fact that well-established CILs, run by users for users, have the potential to serve up most of the dishes on the menu.

“Local authorities are contracting with the cheapest providers they can get to support people on direct payments, and most of these are not user-led organisations,” Bott says. “Opportunists have flooded the market because they’ve seen a chance to make money. There’s not really much evidence that local authorities are taking into account the value of having an organisation which is user-led on their patch.”


p24/25 27 March issueOne exception is Southampton which has a flourishing CIL, although it recently lost part of its Hampshire contract to a bigger non user-led provider. It works closely with the city council and claims to be the first independent provider to have won a contract to offer “support brokerage”, drawing up support plans and sourcing services for people on individual budgets.

Jeremy Long-Price, one of Southampton CIL‘s four new support brokers, says some of the specialist services necessary for personalisation still don’t exist locally and that there’s “an awful lot of work to do” to fill the gaps in provision.

“The current emphasis is on get them up, get them dressed, serve meals, but social care services should be much broader than this,” says Long-Price, a former nurse who works with disabled adults. “The council has been engaging with local providers to find a way of developing these services, but my big concern is that local authority funding will be restricted and providers won’t be able to provide at an acceptable cost.”

He admits to serious doubts about the government’s ULO plans, fearing that larger charities trained and kitted out for the contracts race will cruise to victory. Few of them are user-led.

“One example is a charity set up in Sheffield for the education of steelworkers which is now providing direct payment support,” he says. “How that squares with the disability movement and the idea that providers should have first-hand knowledge of the experience of disability, I’m not too sure. In the last few years enormous damage has been done.”

Long-Price blames competition law for forcing councils to put user support contracts out to tender, often leaving the less established user-led organisations in the lurch. Worcestershire Association of Service Users, whose chief executive is Zana Collins, worries that this could be the fate awaiting it. With its £38,000 a year contract expiring at the end of this month, WASU was belatedly thrown the lifeline of another year’s funding by the council. Beyond that, the future is anybody’s guess. Collins says: “We’re fighting to survive because of the way the council is cutting back on ULOs. We’re putting in bids left, right and centre to secure our future, but to no avail. No other organisation in the county does a similar job to us for service users. It’s been a shock, quite scary.”

Simon Heng (pictured right), Community Care columnist and until recently chair of WASU, says that the range of its activities has steadily reduced in the last four years. In his view many CILs and similar groups like WASU are ill-equipped to meet the demands made on them by the government.

“Not only do service user organisations need financial investment, but the active volunteers need to be reinforced through ongoing recruitment, effective support and confidence-building,” Heng says. “Every area has – or at least used to have – a user-led organisation that could be developed to take on the role, but I can’t see this happening nationwide by 2010.”

Hoping to prove him wrong, the Department of Health is spending £750,000 on grants to 12 ULOs to improve business skills and act as mentors in fostering new organisations where they don’t already exist.

Essex Coalition of Disabled People is one of three ULOs given grants specifically to seed similar organisations elsewhere, in this case neighbouring Cambridgeshire. Mike Adams, ECDP’s chief executive, says the DH had hoped to find five ULOs with the experience to help others develop. “It could be that there aren’t enough established, mature ULOs out there already who feel up to it,” he admits.

ECDP has deep roots in Essex, giving disabled people in the county a voice, influencing self-directed care, and providing a clutch of services such as payroll advice supporting users to live independently. Out of some 1,500 direct payment recipients in the county, 1,300 use the payroll service. Brokerage, help with support plans, mentoring and peer support are in the pipeline.

Personal budgets

Around two-thirds of its income comes direct from local authorities, but this will diminish gradually over the next five years as more service users are given personal budgets which they can choose to spend on buying ECDP’s services.

Compared with the Essex Coalition’s giant oak, many ULOs are saplings struggling to survive in adverse conditions. Improving the soil and growing them to maturity takes years and Adams (pictured right) estimates that Cambridgeshire may have to wait until 2013 before it has a developed, robust organisation serving and speaking up for its users.

That progress depends on the attitude of the host local authority is shown by the experience of Wiltshire and Swindon User’s Network, which was the target of cuts after the sudden departure of the county’s community services director Ray Jones two years ago. Now WSUN chair Brian Warwick says things are on the up again.

“There’s been a breath of fresh air in the corridors of county hall and a tremendous amount of energy put into the work we’re doing,” he says. The network plans to set up a consortium with other user-led groups in the county and form a coalition with a proposed centre for independent living to underpin the shift to self-directed support.

Warwick questions whether local centres for independent living always do enough to build up their capacity through partnership working. “Attitudes here have changed,” he says, “and we want to work together to bring the barriers down. Our experience is that if you take a proactive approach, you achieve a lot more.”

Contact the author

Mark Ivory

This article appeared in the 27 March issue under the headline “Do you believe in ULOs?”

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