John Evans, UK

Speech 28 November 2008: Independent Living in the UK
- Developments, Accomplishments and Impact on Government Social Policy and Legislation

John Evans, UKBiographical Notes

John Evans is a Disability Rights and Diversity Consultant, Trainer and Researcher in the UK, Specializing in Independent Living and Disability Rights.

He was one of the first persons to set up an Independent Living scheme in the UK with funding to organize his own personal assistance. He has now been running his own scheme for 25 years. He has been actively engaged with the Independent Living Movement of both the UK and Europe since their beginnings.

He commissioned the first piece of research on Direct Payments in the UK, when he was then with the BCODP (British Council of Disabled People). This was called “Cashing in on Independence” which was carried out by the Policy Studies Institute.

He has been involved in the disability movement in the UK and Internationally for many years and was one of the founders of the Hampshire Centre for Independent Living (HCIL) and Hampshire Coalition of Disabled People (HCODP) in the 1980s, and NCIL in 1996.

He is on the Board of Directors of both the European Network on Independent Living (ENIL), and the European Disability Forum (EDF). He has been a policy advisor on a number of different European Commission studies in particular the EU “Included in Society Project” which carried out a study of disabled people in Institutions throughout Europe which made a number of recommendations calling for more community based services in Europe. He was one of the founding members of the European Coalition of Community Living (ECCL). He has lectured, led workshops and organised seminars in many different countries and writes on disability rights and Independent Living issues. He is also an editor of the International publication “Disability and Society”. He is an “Expert by Experience” for CSCI, and currently is on the CSCI’s National Quality Board.

He is an Honorary Fellow of the Centre for Citizens Participation at Brunel University. At the UK Queens Birthday Honours List 2001 he was awarded the Order of the British Empire (OBE) for his services and work in Disability Rights and Independent Living.

He was also awarded the Silver Banner Award by the Tuscany Regional Government in Italy in 2003, the European Year of Disabled People, for his distinguished international work in Independent Living and Human Rights for Disabled People.


Speech 28 November 2008: Independent Living in the UK
- Developments, Accomplishments and Impact on Government Social Policy and Legislation
by John D. Evans OBE, November 2008


In this paper I would like to provide you with an overview of Independent Living (IL) in the UK since its formation in the late 1970s. I will highlight some of the significant times of this development but I would like to concentrate on the latter years from 2003 until today, as before 2003 much has already been recorded. I think the last five years of the IL movement are important because these are the years which reflect the coming-together of the philosophy of the IL movement and the national Social Care Policies of the current UK Government. I believe, this experience is unique not only in Europe but probably throughout the world. In doing this, I hope to show you some of the accomplishments of the IL movement in terms of how it has been a decisive factor in the country's development of thought, policy and practice in the disability field and how this has also impinged upon the academic world and received public recognition in mainstream culture.

The History of the IL Movement

The origins, history and development of the IL movement in the UK have already been documented in detail in a paper (1) I wrote in 2003 for a Spanish publication (2) on the IL Movement worldwide.

In order to come to an understanding of where the IL movement is today and how it has achieved this, it is worth highlighting some of the key strands, themes, events and attainments of the movement. This will also reflect how the legislation has changed and adapted as a direct result of IL.

Its beginnings can be traced directly back to a group of disabled individuals living in institutional care who refused to accept that they were destined to spend the rest of their lives excluded from the rest of society. This group was known as Project 81.

Project 81

The roots of IL in the UK are firmly embedded in creating an alternative solution to institutional care by disabled people demanding control over their lives and all the decisions that go with it. It was a vision which at that time was not understood or accepted, but the Project 81 (3) group through their determination was able to decisively convince the social administrators of the day that it was possible to live independently in the community with everybody else. The late Rock singer Ian Dury named this group the “escape committee”. In the end, this group proved their critics wrong as IL began to spread rapidly throughout the UK.

The Project 81 group was able to live in the community because they successfully negotiated with their Local Authorities to receive a grant which they would use to pay for their support in the community. At this time, there were different interpretations as to whether Local Authorities could do this legally within the existing law. The problem, believe it or not, was due to the National Assistance Act 1948, as this Act stated that Local Social Services could only provide Care and not Cash. The way Project 81 and the Local Authorities overcame this dilemma was by channeling the money through a third party, e.g. charity, housing associations or voluntary organisations. The Third Parties would then transfer the grant into the individual’s bank accounts.  Surprisingly enough, this arrangement would remain until the Direct Payments Act of 1996.

Independent Living activists were always uncomfortable about this because they felt it to be unjust. This meant that those disabled people who lived in areas that did not have a Local Authority that was innovative, daring and willing to take risks were not able to live independently. These Authorities did not see the benefits which were gained through an independent lifestyle in terms of the improvement of the quality of lives of the individual.

Threat to Funding of Independent Living

This situation demonstrated the courage, the Independent Living advocates had in sticking to their principles. This all came to a head in 1986, when the county treasurer and solicitor of Hampshire got cold feet about the scheme and decided that it was illegal. By a stroke of good fortune, at exactly the same time the Audit Commission, which is a national body monitoring the services of local authorities, published an influential report, “Making a Reality of Community Care” (4), that praised Hampshire's approach and questioned the legal objection to it. As a result of this, the County Treasurer and Solicitor withdrew their threat and the scheme continued.

Some years later, in 1992, there was another fright when the Department of Health issued a circular instructing councils to stop all direct payments. Many councils did so, but Hampshire held its nerve. Thankfully, there were other councils in the UK who still persisted with their support for Independent Living despite the government’s warning. I think these incidences show that by keeping their nerves, the local authorities were able to ensure the survival of independent living in the UK.  It was not easy for the activists at this difficult time, being aware that their futures were precarious because of this legal uncertainty.

I think there are some other key areas worth highlighting which are fundamental to the Independent Living Movement and its development in the UK.

First Centres of Independent Living

Firstly, I think the other area that is worth pointing out is the emergence and founding of the first Centres for independent living.  These organisations were able to provide an infrastructure of support, advice and information which could promote further independent living initiatives. They were endowed with an invaluable expertise, which was essential in supporting a sustainable framework to enable the movement to flourish. It was a collective approach which soon developed a dynamic network of different models of exchange, ideas and practices throughout the country.

The Derbyshire and Hampshire CILs were the first to be set up in 1984. These CILs were founded on similar lines to those in the USA incorporating the basic “Independent Living Principles”. This meant that the services provided would be available for all disabled people regardless of their impairment, gender and background. These emerging years of CILs were an inspirational and challenging time because these organisations were run and controlled by disabled people which ensured the right emphasis to empower them to manage IL. At this time, disabled people in the UK gained much encouragement from their disabled colleagues in the USA.

Regular meetings were arranged between the Derbyshire and Hampshire CILs and other disabled people interested in developing projects in other areas, which kept the momentum going through the positive exchanges of ideas and strategies. This collaboration enabled both groups to prosper and develop a cross-fertilization of ideas.  This helped them support each other in strengthening their will and determination to secure a firm platform for their infrastructural development and to look at creating a national network and movement.

The two CILs were different in terms of the models they established for themselves. However, this formed the basis of a framework in which other CILs were able to use when they were setting themselves up. It was not long until there were many CILs throughout the country as they developed quite rapidly throughout the 80s and 90s. There are now over 50 CILs or similar types of organisations operating within the UK. Over the last five years in particular, many have struggled due to severe financial cutbacks in many areas throughout the UK. Since the introduction of Direct Payments in 1997 most CILs managed contracts for Direct Payments support workers and schemes but again over recent years they have lost out in the tendering process to more commercial organisations and charities that are not run and control by disabled people. There is a growing movement now to redress the situation and establish more User Led Organisations (ULO) in order to regain control of Direct Payments schemes and the new radical Personalisation Transformation of Social Care Policies of the UK.

The Independent Living Fund

The introduction of the Independent Living Fund (ILF) was absolutely critical in enabling disabled people to have decent packages of support. This was because this National Fund provided extra money over and above what Local Authorities could provide. It was ideal for people with high support needs. The ILF was introduced in 1988. It came about because there was a big change in the Social Security Law in 1986. At this time disabled people were outraged; as a benefit called the “Domestic Care Allowance” was removed. The reason for this was because many disabled people used this benefit to top up the money they received from the Local Authorities. It meant that without this, many disabled people who had established their IL schemes throughout the UK were faced with a crisis of survival. A movement of many different disability organisations was formed to protest against these Social Security changes. In 1986 London had its biggest ever disabled People's demonstration to protest against these changes. Following this demonstration, there was a lot of political lobbying and direct action highlighting the adverse effects it was having too many disabled people, who were suffering more poverty and struggling to maintain their support systems.

The government then finally realised that it had to put something in its place to avoid further hardship.  The ILF was established and immediately made it a big difference I how disabled people organised their IL schemes. The ILF now provides support for approx. 19,000 disabled people. The reason why it is so essential is because Local Authorities have a ceiling of how much they can contribute towards to somebody’s Direct Payments which is usually £ 250 per week and this does not cover people with high needs of support.

We are keen to maintain the ILF, with all the current new Social Care changes happening in the UK at the moment. We do not want this budget to go to the Local Authorities because we know they would not provide enough funding alone due to the restriction in their resources and eligibility criteria which they use to assess a person’s needs. These eligibility criteria are often service- and resource led and not led by an individual’s needs. This is the big battle of the IL movement to achieve a self-assessment approach which will overcome this difficulty.

This has proved to us the importance of a National Fund. We were not always convinced about this at the beginning. The main reason for this was because we had to go through two different assessments. Now with the current Social Care Personalisation transformation going on and introduction of something called individual budgets, it is even more crucial to receive this. The intention now is to put all the different strands of funding together. The main thing we have to ensure is that there are disabled people who do not lose in their packages.

The more I think about this, the more I realise how big an achievement the ILF was, particularly now when we are going through such a radical Social Care transformation.

Disability Discrimination Act (DDA) 1995

I think it is worth pointing out the success of finally getting the DDA passed. This was a long painstakingly process which amazingly enough took fourteen years. It started in 1981 and every year until 1994, we had a bill trying to go through Parliament and each year it failed.   At that point in time, the government refused to accept that discrimination existed and always said that the best way forwards was not through legislation but through education. The disability movement refuted this situation knowing it was not realistic as this is what has been said for many years.

The DDA became law in November 1995.  It was one of the fastest pieces of legislation that the government has brought in. The government was politically forced into bringing in some kind of legislation around discrimination because of the amount of publicity that was being generated by the demands for civil rights legislation and the embarrassment it was causing the government because of this public exposure. It was a political compromise is to counteract the more radical Civil Rights Bill sponsored by the Rights Now campaign that was going through Parliament at the same time. The DDA took only 6 months from beginning to end in becoming law which indicates how rushed a piece of legislation it was. This rush was due to the fact that the government was getting very embarrassed by the demand of direct action which was occurring at this time which included the famous news broadcast scenes of disabled people bringing traffic to a standstill in Central London, chaining themselves to the gates outside Downing Street and pouring red paint over themselves and the pavements as well as chaining them to the Parliament building.         

Unfortunately the DDA was flawed from the start as being a weak piece of legislation which was unenforceable and was considered a drop in the ocean, as it was certainly not going to protect disabled people from the many forms of discrimination which existed. It outraged the disability movement because it denied them the fully comprehensive civil rights legislation which they had worked so hard campaigning for, and consequently they refused to have anything to do with it.

The DDA, however over time, has had considerably impact on British society and has protected disabled people from discrimination in the fields of employment, provision of goods and services, access to public buildings and services, more accessible transport including taxis. Disabled people’s rights are now far more protected as they were, and it is probably the best “Antidiscrimination Legislation” than in any other European country.

Campaign for Direct Payments

We started the campaign to get Direct Payments legislation in 1989. This was because the movement felt uneasy about disabled people not being able to access funding for IL, if they lived in certain parts of the country and did not have support of the Local Authorities. We call this the “Postcode lottery” in the UK. We wanted a law based on equality of need and not based on what part of the country you lived in.

It was surprising how quickly we achieved the Direct Payments Act in terms of how long it can take to get legislation through the Parliament, especially Disability and Human Rights Legislation. At least it did not take the fourteen years which it took for the Disability Discrimination Act (DDA). It was a great relief to us when the Minister of Health announced the introduction of Direct Payments Legislation in 1994. It did not come easy though. It took much campaigning, lobbying and hard work but the IL movement and our allies. We had four attempts of getting this new bill through parliament before it was finally realised.

It was surprising that some of our main supporters for the Direct Payments Act were from the professional social care fields, e.g. Association of Directors and Social Services (ADSS), Metropolitan Authorities (AMA) and Local Government Organisations (LGO). They proved a great ally, and together with the convincing piece of research done by the influential Policy Studies Institute (5), which came up with the findings that disabled people were far happier having their own Direct Payment schemes, as opposed to having direct services from their local areas. It also showed that disabled people had more control and choice over their lives, more flexibility and satisfaction and they were also cheaper to provide direct services. This research is what I think made the final impact on the government in changing its mind to call for Direct Payments legislation.

Direct Payments in the UK

The Direct Payments scheme in the UK is seen as one the main successes of the IL movement. The reason for this is that it meant that Direct Payments was made available for all disabled people regardless of their impairment. It did start with physically disabled people but now is open to people with learning disabilities, Mental Health users, older people and any other impairment group. It has made a huge difference to all these groups in providing more appropriate services for individual needs. The only group that has had difficulties is Mental Health users as there has been a lot of resistance from mental health professionals in supporting them to do this.

The fact that we were able to have Direct Payment legislation meant that there was a legal entitlement for this service. When the Act was first implemented in 1997, it did not force the Local Authorities to do it, so there were still many areas that went ahead with it. In 2001, this changed with the Social Care Act because then the government specified that every local authority in the country had a duty to provide Direct Payments. The Disabled Children and Care Act 2001 then made direct payments available to sixteen to eighteen year olds and parents of disabled children as well as carers.

The success of direct payments has led to what is known as individual budgets. These are pretty much the same except individual budgets are intending to use other sources of funding, e.g. health, access to work and the ILF.

National Centre for Independent Living (NCIL)

The formation of the National Centre for Independent Living in 1996 also had considerable impact on the IL movement. It meant that we had a national centre to coordinate actions, meetings and the work of the IL movement around the country. It became a great groundswell of ideas. It organised regular meetings a few times a year which brought people from the different parts of the country together who were able to exchange ideas and practices about how each CIL or Direct Payments scheme did things. This forum became an action and learning group in helping different CILs focus on what strategies and directions they wanted to go in. This way, they were able to monitor quite carefully, how direct payments were being delivered around the country and the various differences of approach there were. As a result, bad practice was quickly shown up in some areas, which they were able to resolve. The NCIL was also able to put pressure on the government in trying to influence change.

NCIL became a vehicle with which we could work with government in helping develop direct payments and the IL philosophy. Regular meetings with different Ministers, helped to keep them informed with what was happening and was of an extreme importance in getting the government on our side. We were able to get key Ministers to speak at major conferences and events throughout the UK. NCIL is still trying to fulfill this role and is having much greater influence. The only problem now which many other CILs and disability organisations are also facing is the lack of funding which it has. This immediately affects its capacity to be able to do everything it needs to.

Disability Rights Commission (DRC)

The Disability Rights Commission also had a key role in its brief existence from 1998 to 2007. In this time it achieved a lot in terms of developing policies and campaigns, especially on IL. It was influenced much by the movement and the work it did with NCIL.

We had key allies in the Independent Living policy unit, as well in the campaign and political departments of the organisation. The Parliamentary political team was very instrumental in working with the Independent living movement through NCIL in drawing up for the Independent Living Bill. This has now gone through the Parliament for 4 years running and we will continue to push for this. Unfortunately at the moment the government is not very supportive as it feels the IL Strategy which it released this year in 2008 is the way to go forward.

The DRC were also helpful in monitoring the DDA in terms of individual disabled people experiencing discrimination in one form or another. Since the DRC has now merged with the Commission for Equality and Human Rights (CEHR), this momentum monitoring discrimination has slowed up. This is unfortunate. We can only hope it is temporarily phase when the new organisation is finding its feet, but I personally have my doubts. It is now the responsibility of CEHR to fulfill this role. The Commission has a Disability Committee that is supposed to cover this area. Only time will tell how effective this will be. The CEHR now consists of the three old Commissions, Disability Rights Commission, Racial Relations Commission and Equal Opportunities Commission. As well as these three areas it does cover Age, Sexual Orientation and Religion.

In its lifespan, the DRC were very good in drawing up many policies. There is a general feeling in the UK now that we have lost a key ally in protecting our rights and working along with this for the benefit of improving policies and good quality services. The same positive relationship has yet to develop with the new commission. However we do have people like Jane Campbell and others on the Disability Committee who are fighting our corner. The problem with the commission is that it covers all the areas of equalities so disability issues have been watered down. Exactly the same thing happened in Europe, with the horizontal approach to discrimination. When the new nondiscrimination, programme developed with the European commission, disability NGOs, missed out on funding in the way that they were used to prior to this and the disability specific areas of discrimination were not adequately covered. I hope the same does not happen in the UK with the new commission.

Significant Advances in Terms of Influencing Disability and Social Policy

In the UK the disabled people's movement has always been political. It has tried influencing the government whenever the opportunity has arisen. What has helped us is that the IL philosophy makes obvious sense and shows a way forward for disabled people generally whether they are signed up to it or not. I think we have a rich history in the UK of disability politics of IL and an IL movement, which has constantly looked for answers and come up with creative solutions.

The IL movement’s lobby started in the UK as the independent living committee of BCOPD, the national democratic representative of Disabled People’s Organisation. It was later continued by the work of the National Centre for Independent Living. It is this thread that has led us into interesting times now in terms of the government using our language and ideals in many of its own policies. This was not an accident. I think, it clearly shows the power and common sense of the core values of IL and how it can now be included in mainstream policies.

One of the key disabled activists, who since the mid-90s have engaged in working for the government on a consultancy basis in a number of different areas and departments, was Jenny Morris. Jenny has a long history in the disability movement and has written many books and articles on these issues as well carrying out significant works of research. She is now currently the Chief Executive of the Office of Disability Issues, which leads on the Independent Living strategy in the Department of Works and Pensions.

Improving the Life Chances of Disabled People Report 2005

She worked for the Department of Health on a number of different projects during the 90s and was instrumental in formulating some key policy documents. The most significant change came when she was commissioned to do some work with the Cabinet Office directly under the Prime Minister in his Strategy Unit.

This Unit did an extensive study of disability in the UK, and one of the key areas, Jenny pushed for was IL. As a result of the considerable research and consultation in her work within the Department, the study concluded with almost a revolutionary policy document called “Improving the Life Chances of Disabled People” (6). I think this document was fundamental as being a catalyst for change, and the drawing up of the new current social care policies. It was greeted by the IL movement with excitement because of its wide ranging recommendations and potential beneficial outcomes to the disability community in the future.

The report highlighted a vision for disabled people in the UK up until 2025. Amazingly enough, one of its main recommendations is to set up a Centre for Independent Living in every locality throughout the UK. This Report set out a vision for disabled people to have full opportunities and choices to improve their quality of life, and to be respected and included equally by 2025. This is where the original proposal to have individual budgets was also introduced as one of its main recommendations, along with the setting up of CILs or User Led Organisations (ULOs) in each local authority locally throughout the country.

It also recommended the improvement of advice services available to disabled people, and that the existing problems with suitable housing and transport should be addressed. This is also where Equality 2025 came from. Equality 2025 is a group of disabled people which was set up by the government to monitor and review policy and make reports. It was meant to be inter-departmental and would cover a number of different of key government departments. It would be based at the Office of Disability Issues which was another recommendation from this report. This was part of the Labour Government Third Way of joined up thinking between the different departments. The Life Chances Report made 60 recommendations.

The Report gave a commitment that:

  • Government departments would model good practice in involving disabled people. This led to the development of the Office of Disability Issues (ODI).
  • User involvement protocols would be developed by public bodies in consultation with disabled people, e.g. Association of Directors and Social Services (ADASS) and NCIL.

It also highlighted two other key issues which were transition and employment. This was quite a radical change, as it took disability out of the Department of Health and into the Department of Works and Pensions, as well as including other key departments. It wanted to achieve full equality for disabled people by the 2025.

In many respects, this was quite a powerful vision, which has come from the government. I think it is important to know that it would not have come without the direct involvement of key activists from the movement like Jenny Morris and her colleagues.

Jenny was not alone, as were many other activists playing the role in influencing and lobbying government for positive change.  Another figure was Jane Campbell who is now Dame Jane Campbell of Surbiton, who has a seat in the House of Lords, which means she is directly involved in working on all the major debates of Parliament.  We also have a few other disabled people in the House of Lords, who are working with her.

It is a very important position, as she is able to make amendments and comments on all the Acts of Parliament. She obviously concentrates on the key issues around social policy and disability legislation.  Jane was also the first Chief Executive of an organisation which was set up to research and to highlight good practices that were going on in the social care field in the UK. This was called the Social Care Institute of Excellence.

“Our Health, Our Care, Our Say” 2006

Another key policy document which has a wide-ranging potential for the future of disability policies, is “Our Health, Our Care, Our Say” (7) which came out in 2006. The Consultation responses to this White Paper confirmed that people wanted access to support when they need it and they expect it to be available to them quickly, easily and able to fit into their lives.

Most of the main points of the previous Green Paper “Independence, Well Being and Choice” (8) which preceded it are included in the White Paper.

It also confirmed that the seven outcomes from “Independence, Well Being and Choice” would provide the central features for a social care model.  These being:

  • improved health
  • improved quality of life
  • making a positive contribution
  • exercise of choice and to attempt and control
  • freedom from discrimination or harassment
  • economic well-being
  • Personal dignity

“Putting People First” Concordat 2007

The importance of a holistic approach to Social Care policy is recognised and underpinned by “Putting People First” (9) This landmark Concordat was launched by the Minister of Health, Alan Johnson, in December 2007 where he emphasized that this was the most radical change in Social policy for thirty years. He said now that we have to see social care as the individual being in control of his support and not the state intervening. This is a shared vision and commitment to the transformation of Adult Social Care. It is a Concordat which establishes a collaborative approach between central and local Government. It sets out the shared aims and values, which will guide the transformation process of adult social care.

It was signed by six Government departments: the Treasury; the Department of Health; Department of Works and Pensions; Department of Communities and Local Government; Department of Innovation, Universities and Skills and the Department of Children, Schools and Families. It was also signed by a number of key organisations like the ADASS, CSCI, Social Care Institute of Excellence and Local Government Organisations (LGAs).

It seeks to be the first public service reform programme which is co-produced, co-developed, co-evaluated and recognizes that real change will only be achieved through the participation of users and carers at every stage. It recognizes that sustainable and meaningful change depends significantly on our capacity to empower people who use services and to win the hearts and minds of all stakeholders’, especially front line staff.

In future organisations will be expected to put citizens at the heart of a reformed system. Incentives will include the new focus of the local performance framework, putting guidance on commissioning for health and wellbeing, Human Rights legislation, and any international obligations such as the new UN Convention on the Rights of Persons with Disabilities.

Independent Living Strategy

The IL Strategy (10) was the end result of two years of research, study and consultation among many stakeholders. It was led by the Office of Disability Issues and was guided by a panel of experts in IL which was chaired by Dame Jane Campbell.

The main points of the strategy are the following:

  • We want to create a society where everybody is treated with dignity and respect and has the chance to fulfill their potential and unlock their talent. We need to ensure that disabled people are a full part of this agenda.
  • The Government is therefore committed to delivering on full and equal citizenship for disabled people and sees IL as being part of the way we advance this. IL enables disabled people to fulfill the roles and responsibilities of citizenship.
  • This Independent Living Strategy sets out a strategy to improve disabled people’s experiences and life chances. It is a cross-government strategy because it is only through all Departments working together can we really deliver for disabled people.
  • It is the Government’s ambition that by 2013, disabled people have more choice and control over how their needs for support and/or equipment are met. We also need to make significant progress in tackling barriers to disabled people’s access to health, housing, transport, and employment opportunities.
  • The personalisation of services is one element of the wider cross-government Strategy on IL. Giving disabled people greater choice and control over the support they need and the resources available to them is important, not just in social care, but across mainstream services as well – housing, transport, health, employment, education and training – and across all age groups, including young disabled people in transition to adulthood and older disabled people.
  • We acknowledge that there is a gap between national policy and people’s real experiences. This Strategy will begin to fill this gap.
  • The Strategy has been developed in partnership with disabled people to ensure that it reflects their knowledge and real life experiences of the barriers to IL.
  • The Strategy includes new investment from Government, and is also about using current resources in more effective and empowering ways.
  • This is a five year Strategy and we will look every year at what progress we are making. We believe that this change can be achieved without new legislation but, we are committed to reviewing the situation if delivery does not happen.

The Role of User Led Organisations (ULOs)

The term ULOs was derived from the Government’s policies following the “Improving Life Chances” Report which recommended that CILs should be in every locality in the UK by 2010. Somehow, in the government rhetoric CILs became ULOs even though a ULO is supposed to be modelled on a CIL!

User-led organisations can play a fundamental and important role in assisting transformation through Peer Support. There is nothing better than the direct experience of disabled people, sharing their understanding and views of how things can change for the better.

ULOs can provide training in order to bring users up to speed with the new transformation process into individual budgets etc. .

ULOs can provide an array of different expertise for new ULO’s in their development of providing good quality services and support in local areas.

ULOs can ensure a good mix of different user groups and organisations, so they can support each other. This would mean including people with learning disabilities, mental health service users, older people’s organisations and carers.

Used led organisations must have a crucial role in a new vision of IL.  They can play an essential role in transforming social care so that services are driven by the needs and wishes of those who use them to deliver real IL.  When resourced adequately, local user led organisations have been found to be the most effective and efficient means of delivering a range of services including advocacy, self advocacy, peer support and supported decision making.  Services can be greatly improved by the people who use them, having a leading role in delivering, monitoring and evaluating services. User led organisations can play a key role in consultation processes because they have the knowledge base about issues around local service provision.  They can also advise on practical issues on how to involve marginal groups in consultation.

Inter-agency Group of Statutory and Voluntary Organisations, representing the Third Sector, can also play a fundamental role in partnership with disabled people’s organisations in bringing about positive changes in the Transformation agenda.

The new system of individual budgets is about promoting self determination, information, advice, advocacy and peer mentoring services will be an important part of enabling people to self assess their needs, apply for and use an individual budget. The new system needs organisations that understand the barriers to self determination and are committed to helping people have control over their lives.

User led organisations are the right organisations to do this and the pilot areas are working with CILs or similar organisations where they exist. However, if the implementation of individual budgets is to be done in an empowering way for all groups of people with support needs then user led organisations representing all these groups need to be given a clear role. This is why there is a need for a network of user led organisations working together in each area.

User led organisations can also assist in the following:

  • Involving people who don’t usually get involved
  • Increasing involvement of people who use mental health services
  • Promoting user involvement to bring about change in local social care services

I think it is clear that if the Personalisation Transformation is going to be successful it will require true co-production and co-development with user-led organizations. If not, we will find ourselves going backwards instead of forwards into a positive future.


In the UK, we now have a rich and diverse amalgamation of key government social care policies. The question is now, whether these will deliver real change at a grassroot’s local level truly affecting the lives of individual disabled people and carers. This remains to be seen. What I do know is that the IL movement is actively engaged in this process and committed in doing what they can in making this a reality. This will be one of our big challenges in the coming years.



(2) Alonso, J.V. (2003): "El Movimiento de Vida Independiente, Experiencias Internacionales". Madrid.
(3) “One Step On”, HCIL publications, 1986.
(4) “Making Reality a Community Care”, Audit Commission, 1986.
(5) “Cashing in on Independence”, Policy Studies Institute, 1994.
(6) “Improving the Life Chances of Disabled People”, Cabinet Office Strategy Unit, 2005.
(7) “Our Health, Our Care, Our Say”, White Paper, Department of Health, 2006.
(8) “Independence, Well Being and Choice”, Green Paper, Department of Health, 2005.
(9) “Putting People first” Concordat, Department of Health, 2007.
(10) “Independent Living Strategy”, Office of Disability Issues, Department of Work and Pensions, 2008.