Developments in Independent Living and Direct Payments in UK

Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003. Internet publication URL:

Report to the ENIL Board Meeting, 8th March 2003 Southampton

by John Evans, February 2003

There have been a number of developments in Independent Living and Direct Payments in the UK over the last few years. I shall try and highlight a few of the main issues.

In some respects we now have a Government that is committed to expanding Direct Payments considerably. This is actually to the extent that Direct Payments are now being made available to a number of other user groups. Please see the figures attached to this Report to give you an idea about this.

In England, Direct Payments becomes “mandatory” from April this year. This means that if a disabled person or a carer is eligible for community care services, they must be offered direct payments as an alternative. (They can still choose to use services, or a mix of services and payments if they wish.)

New guidance on direct payments is going to encourage local authorities to take a positive view of direct payments. For example, the previous guidance implied that people must be assessed to see of they were competent to consent to a direct payment. New guidance says that competence to consent should be assumed unless it is different to the norm.

The Government is making available £9m to support the expansion of direct payments. This money will be spent in the voluntary (NGO) sector (which includes disabled people’s organisations).

In Scotland, direct payments become mandatory from June last year, for all community care users. This includes women fleeing domestic violence, asylum seekers and people with drug or alcohol problems as well as disabled people. As with England, they will have to be offered the alternative of direct payments.

Direct payments are developing in ways we did not anticipate. Payments to children and to carers, payments to people with power of attorney, and in Scotland payments (potentially) to asylum seekers and women fleeing domestic violence, all change the landscape of direct payments. The relationship between the disabled people’s Independent Living movement and direct payments has become less distinct.

Some people suggest we have to accept this, and move on:

“Direct payments are the Independent Living movement’s gift to the community” (Jack Blaik, Direct Payments Scotland)

Others suggest that we should expand our vision of independent living and expand our services to support all the new users. To many at the front line this feels hard or impossible. We know, from our own research, how stretched many Independent Living organisations are.

“(The) user created structures of CILs, networks and coalitions have been systematically compromised by a serious lack of public and private investment; the framework is fragile, regionally variable
and seriously over stretched.

Funding is a major problem for all user-controlled support services. It is generally short term in nature and in the overwhelming majority of cases limited to the development ofparticular projects.

This has important negative implications for the type of premises used, the numbers of staff employed and the type and long term availability of the services offered”.(from Creating Independent Futures report)

This was a report that was carried out by NCIL and the Leeds University Disability Studies Unit, under the direction of Dr. Colin Barnes. Copies of this report are available from NCIL.

There is also a pressure to expand to cover all the “seven basic needs” identified as core services for CILs. At NCIL we have discussed further work on housing and technical assistance, as logical complements to our work on personal assistance. Expanding further to some of the other basic needs would be very difficult because of the stretched resources again.

CIL as a service to the community as a whole has been muted by some disabled activists. Some commentators (notably Vic Finkelstein) have suggested that CILs should develop to serve a range of disadvantaged people in their communities, in order to be fully inclusive.

I think the Washington declaration can be used as an example of a comprehensive value statement; it was written by a truly global gathering of disable people, which I think gives it strength: the ideas it embodies work in every country and culture. It also encapsulates well the principles of the Independent Living Philosophy.

The broad philosophy outlined in it reflects the inclusionist model espoused by some organisations in the UK (e.g. Derbyshire CIL and WECIL.)

Inevitably, NCIL will need to choose a few of the areas outlined in the declaration to follow up in a work programme. But we can set our work in the broad philosophy of the global Independent Living Movement.

Personal assistance or something else is what we need to debate.

Given that NCIL’s short term funding is linked to direct payments, we can not move away from our historic commitment to personal assistance. We can add “technical assistance” (equipment) quite readily to our portfolio. As suggested in other reports, adding housing to our work is logical and desirable.

Future for NCIL

A grant from the Government to carry on for another 3 years is starting in April, well, at least we hope as we are still waiting to receive this in writing. Also we have the opportunity to bid for a share of the “new” money (the £9m) available to support direct payments. NCIL needs to consider this carefully.

As some of you have already been informed, NCIL experienced grave difficulties over the last 9 months, due to a directional difference NCIL felt it needed to go in. Until now BCODP the National Organisation has always had the executive powers of controlling NCIL, even the day to day management was run by the BCODP Independent Living Committee. As a result of irreconcilable differences NCIL felt that it needed financial and management independence and autonomy, and from April it will be an independent National Organisation in its own right. BCODP of course did not like this, so these last 9 months have been very difficult. Hopefully, this is now all behind us and NCIL can move on again.