The Independent Living Movement

The History of NCIL – How did we get here?

In 1989 the European Network on Independent Living was formed to campaign for the right to independent living.

This led to the establishment of the United Kingdom Independent Living Committee which was part of British Council of Disabled People (BCODP, now called United Kingdom Disabled Peoples Council)

In 1996 BCODP decided to set up the National Centre for independent Living to consolidate and co-ordinate all the policy and campaigning work that was being done around independent living and, in particular, to pursue the campaign for direct payments.

One of the first achievements of the independent living committee and NCIL was persuading the government to bring in legislation to make direct payments for social care lawful.

The Community Care (Direct Payments) Act was passed in 1976. Since then NCIL has continued to pursue the aim of independent living for all disabled people, has worked on promoting and implementing direct payments, and has supported the work of its member centres for independent living.

In 2003 NCIL and BCODP decided to go their separate ways.

NCIL has had considerable success in arguing for disabled people to have choice and control over how we live our lives. Direct payments have laid the foundations for self-directed support upon which initiatives such as individual budgets are now building.

The work of NCIL has proved to be pivotal in changing the landscape of services for disabled people so that all main political parties now accept that self-directed support is the way forward.
The concept of Direct Payments was ‘invented’ by disabled people to facilitate control of the assistance they require and therefore facilitate Independent Living.
Source: NCIL

The 12 Basic Needs
Disabled people have identified twelve basic needs which, if met, would enable them to fully participate in society.
SCIL is committed to securing these needs, both locally and nationally.

• Full Access to our environment.

• A fully accessible Transport system.

• Technical Aids - Equipment

• Accessible/adapted Housing

• Personal Assistance

• Inclusive Education and Training

• An adequate Income

• Equal opportunities for Employment

• Appropriate and accessible Information

• Advocacy (towards self-advocacy)

• Counselling

• Appropriate and Accessible Heath Care Provision

7 ethical principles
that underpin Self-Directed Support:

1. Right to Independent Living
If someone has an impairment which means they need help to fulfil their role as a citizen, then they should get the help they need.
I can get the support I need to be an independent citizen.

2. Right to an Individual Budget
If someone needs on-going paid help as part of their life they should be able to decide how the money that pays for that help is used.
I know how much money I can use for my support.

3. Right to Self-Determination
If someone needs help to make decisions then decision-making should be made as close to the person as possible, reflecting the person’s own interests and preferences.
I have the authority, support or representation to make my own decisions.

4. Right to Accessibility
The system of rules within which people have to work must be clear and open in order to maximise the ability of the disabled person to take control of their own support.
I can understand the rules and systems and am able to get help easily.

5. Right to Flexible Funding
When someone is using their Individual Budget they should be free to spend their funds in the way that makes best sense to them, without unnecessary restrictions.
I can use my money flexibly and creatively.

6. Accountability Principle
The disabled person and the government both have a responsibility to each other to explain their decisions and to share what they have learnt. I should tell people how I used my money and anything I’ve learnt.

7. Capacity Principle
Disabled people, their families and their communities must not be assumed to be incapable of managing their own support, learning skills and making a contribution.
Give me enough help, but not too much; I’ve got something to contribute too.
Source: In Control


Survey on public attitudes to social care reveals gulf between expectation and provision
DRC - 13/07/2006

In the first survey of public attitudes to care since the publication of the Wanless Review*, the survey also reveals a high priority among the public for the choice not to live in residential care and a willingness to pay more taxes to fund better social care. Key findings from the report reveal that:

• on the expectations about the kind of support they would receive from social care agencies, nine in ten respondents (90%) said that it was important that they should be able to stay at home if they develop a disability or long term health condition;

• 87% believe it is important that they are given the choice where they live, other than just residential care;

• two thirds of respondents (65%) agree it is important that support from social care agencies should enable them to stay in work.But the reality of social care provision on the ground tells a very different story:

• the Wanless review into adult social care revealed that there are half a million older people whose needs were not being met;

• nearly 70% of local authorities admit that they are only able to provide support to people whose needs are at the highest levels;

• 300,000 people are currently residing in institutions with no alternative and no right to choose to live in their own home.
Source: DRC

Individual Budgets

Where Have Individual Budgets Come From?
The commitment to pilot individual budgets comes from the Government reports Improving the Life Chances of Disabled People (Prime Minister’s Strategy Unit January, 2005), Opportunity Age (Department of Work and Pensions March, 2005), and Independence, Well Being and Choice (Department of Health March, 2005) followed by Our Health, Our Care, Our Say (Department of Health January, 2006).

What are individual budgets?
An individual budget is a sum of money allocated to an individual who is assessed as needing personal assistance services.
The key features of an individual budget are:
• A transparent allocation of resources so that individuals know how much they have to spend on their support;
• The bringing together of a number of support streams which could include local authority provided social care, independent living fund, supporting people, access to work, disabled facilities grant, and integrated community equipment services;
• A streamlined assessment process across all agencies meaning less time having to give information;
• Individuals have the opportunity to use the budget in a way that best suits them;
• Individuals can have the support of brokers, advocates or user-led organisations to support them to develop their support plan and manage it.

Who Can Get An Individual Budget?
Individual budgets are restricted to people living in 13 pilot areas. These are:
West Sussex, Lincolnshire. Essex, Norfolk, Barnsley, Leicester City, Coventry, Bath and North East Somerset, Kensington and Chelsea, Barking and Dagenham, Gateshead, Oldham, Manchester

What is the Difference between Individual Budgets and Direct Payments?
Both individual budgets and direct payments are methods of self-directed support that is it is the individual who decides how their support needs will be met. A direct payment is a cash payment for social care from the local authority instead of services.
An individual budget can cover more than personal social care, for example access to work, and can be a cash payment, or arranged services, or a combination of both. Therefore all, or part of an individual budget, can be received as a direct payment.
Source: NCIL

Improving The Life Chances of Disabled People (2005)
This report has established an ambitious 20-year vision:

“By 2025, disabled people in Britain should have full opportunities and choices
to improve their quality of life, and will be respected and
included as equal members of society.”

Four key goals have been identified in this report as the most important determinants of disabled people’s life chances:
• empowered citizens with choice and control over how additional needs are met;
• support for families with young disabled children;
• smooth transition into all aspects of adulthood; and
• improved employability.

In each of these areas, the Government’s strategy for achieving the vision is based on:
• removing barriers to inclusion;
• meeting individual needs; and
• empowering people.

Disabled people should be at the heart of these initiatives One of the key ingredients for developing this new approach should be the direct involvement of disabled people, primarily through local Centres for Independent Living The capacity within these organisations should be increased to enable them to play an effective part in supporting disabled people to achieve independent living.

Centres for Independent Living are potentially well-placed to provide advice and information, advocacy support and practical assistance in managing individualised budgets. (p:13 life chances)

Recommendation 4.3:
“User-led organisations By 2010, each locality (defined as that area covered by a Council with social services responsibilities) should have a user-led organisation modelled on existing CILs. DH and ODPM to lead”. (P;91)

Box 4.7: Centres for Independent Living are grassroots organisations run and controlled by disabled people
Their aims are to assist disabled people take control over their lives and achieve full participation in society.There are currently 22 fully constituted CILs with another 15 local disability organizations either providing a similar role or working towards becoming a CIL.

For most CILs their main activity, and source of income, is running support schemes to enable disabled people to use Direct Payments.

Such schemes may involve:
• Advice and information;
• Advocacy and peer support;
• Assistance with recruiting and employing Personal Assistants (PAs);
• A payroll service;
• A register of PAs; and
• Training of PAs. (p: 85, life chances)

CILs also:
• run projects encouraging take up of direct payments amongst marginalised groups;
• provide disability equality training;
• carry out consumer audits of services.

The National Centre for Independent Living (funded by the Department of Health) provides information, training, expertise and policy development on all aspects of direct payments and independent living.

In July 2002, NCIL and the Association of Directors of Social Services (ADSS) signed a protocol setting out arrangements for local contracting of independent living services and stating that “the ADSS is committed to promoting independent living for disabled people and to supporting the development of Centres for Independent Living.”

Box 4.8: User led services have proved important in reaching out to Black and minority ethnic disabled people and other marginalised groups108,109
Warwickshire Council of Disabled People appointed an Independent

User Led Organisation Rec: 4.3
Lead Responsibility: DH & ODPM
Support: ODI
By When: 2010

Recommendation 4.4:
Supporting independent living DH supported by DWP, DfES and ODPM should – by 2012 – work towards a new approach to supporting independent living, which delivers support, equipment and/or adaptations in a way that:
• addresses all aspects of needs for support and/or equipment or adaptations;
• is personalised according to individual need and circumstances;
• is underpinned by the principle of listening to disabled people and acknowledging their expertise in how to meet their needs;
• maximises the choice and control that people have over how their additional requirements are met;
• provides people with security and certainty about what level of support is available;

“Local organisations, run and controlled by disabled people, will be a vital part of the implementation of a new approach to supporting independent living”.

Funding for the services provided will come from Service Level Agreements with health, social services, DWP and other agencies, and from spot purchasing of services such as disability equality training and consumer audits. The exact nature of the services provided and their relationship with statutory agencies will vary according to local circumstances but, at a minimum,

The organisations should provide:
• Information and advice;
• Advocacy and peer support;
• Assistance with self-assessment;
• Support in using individual budgets (including cash payments) to meet needs;
• Support to recruit and employ personal assistants;
• Disability equality training; and
• Consumer audits of local services.

The case should be explored for additional resources to be bid for from Spending Review 2006 to facilitate the development of a national network of user-led organisations and to support high quality services. As existing CILs

“provide the same service for older people using direct payments as they do for people below retirement age, it would be expected that the expansion of user-led organisations would similarly provide a service to disabled people of any age”. (92)

9.1 Immediate impact
The publication of this report signifies that:
• the Government has accepted the recommendations, and all directly concerned ministers have signed up to the relevant proposals, conclusions and an effective ongoing process of reform over the coming months and years;
• Ministers and officials have accepted the remit set out for the establishment of the Office for Disability Issues. The Office’s terms of reference will be developed in conjunction with all government

All government departments will be responsible for driving forward the strategy and the practical measures identified in this report – all of which have been accepted by the Government. The Office for Disability Issues will help to coordinate policy across government.

This chapter proposes early action to move forward on the recommendations by ensuring that all parties know what is expected of them by when, and that there is a positive climate and context for reforms to take root.

Effective implementation requires five elements to be in place:
• Immediate impact;
• A clear and understood challenge;
• Clarity of roles;
• Achieving and sustaining momentum; and
• Resources lined up.
Source: Prime Minister's Strategy Unit