Act now: Make sure our voices are heard in social care reform

Social Care Reform; improving Disabled People’s Lives

Inclusion London is working together with Disability Rights UK, Reclaiming Our Futures Alliance, Shaping Our Lives, Bristol Reclaiming Independent Living and Social Care Futures to push the government to engage with Disabled People and DDPOs development of the promised reform to social care.  We believe the main goal for the reform must be to ensure the system works well for those Disabled people who draw on this support to live everyday life.

We ask DDPOs and other organisations to join and support our campaign.

The first step is to sign our statement (see below), which calls on the government to engage with us and sets out our key asks for the reform.

You can sign this statement by following this link here Social Care Reform, improving Disabled People’s Lives (

Please sign by midnight on the 4th of July.

We will send this statement to key government officials on the 5th of July and publicise it.

The biggest goal of any social care reform should be to improve the lives of people who draw on it. We are a coalition of organisations led by Disabled People and supported by allies. We are the direct voices of Disabled People who draw on social care support to lead our lives. We want Disabled People to be central to shaping Government reforms to social care.

These are the basic rights we want the Government to adhere to in the reform of social care:

  • Disabled People should have the right to thrive, not just survive.
  • The role of care and support in today’s society must be to provide care, support and connections that enable People to live the life we choose within their community.
  • Social care must provide support to people to live, learn, work, participate and connect, on an equal basis with others.
  • Reform must be fully informed by the experiences, expectations and aspirations of Disabled People who draw on it.

Principles for reform:

  1. Any reform should implement the UK’s obligations under the UN Convention on the Rights of Persons with Disabilities to ensure Disabled People’s right to live independently and be included in the community.  This means people should have a real choice of where and with whom to live, and have all the necessary support provided to live in the community.
  2. Social care must support the choice, control and inclusion of the people who draw on it. Processes must allow the voice of Disabled People to be heard and their choices respected.   It must enable people to achieve their potential and have equal life chances to others.
  3. Social care support should enable people to live an ordinary life. High quality personal care is essential as well as support to get out and about, build connections with others and enjoy open spaces.
  4. People should receive and experience social care support based on their needs not on geography, impairment, age, race, ethnicity, gender or income.
  5. Relying on social care support must not put people at risk of increased poverty.
  6. People, especially those with complex support needs, should have access to good quality support in the community.  Reform must accelerate the deinstitutionalisation of care and support provision towards more responsive, flexible, varied and self-directed support within the community.

Making Change Happen

To make change happen there must be:

Nothing about us without us

Changes that led to radical improvements for those who use social care, such as person centered planning, personal budgets and direct payments were developed by Disabled people ourselves.  The viability of any reform proposals and their likely success  should be judged by those of us who draw on social care.  Disabled People’s Organisations have already developed solutions which should be considered[1]. This is why we urge the government to engage directly with people who use social care and organisations that are led by Disabled people.

Long term funding

People should receive the care and support we need to lead full lives. Social care must be put on the same footing as the NHS, free at the point of use and funded through general taxation.  There must be a long term plan for social care, as there is for the NHS.  Funding must be based on robust evidence of current and future needs and provide a sustainable solution.

Funding reform must ensure that the experience of people who draw on social care continues to improve. In line with expectations laid out by the UNCRPD the Government should take concrete and targeted action to ensure year on year improvements in the achievement of independent living.

Developing good social care infrastructure is an investment, not only in the potential and future of people who need the support, but in good, green jobs and wider economic prosperity.   A vibrant, diverse and innovative social care sector could play a vital role in our economic recovery after the Covid-19 pandemic.

Reform of the law to give more power to Disabled People and support inclusion

The Care Act has failed Disabled People. It has not prevented severe cuts to support, or the imposition of needless red-tape on those using direct payments.  People are denied the power to make decisions about their own needs, support and wellbeing, with councils often making life changing decisions with very little accountability and with few opportunities for decisions to be challenged.  The law must be strengthened , in line with UNCRPD[2].    :

  • to guarantee Disabled people the right to choose where we live and who we can live with
  • to get the care and support we need to lead full lives
  • to be supported to  live in the community
  • to access community activities like everybody else.

Funding to meet needs and reduce waste

It is critically important to ensure that money is spent on services that Disabled people of all ages want and need – services that move the UK forward towards standards set out in the UNCRPD.   Currently money is often wasted on services that do not support choice, control and inclusion[3]. This must stop.  The reform must put maximum available resources into direct support, allowing people to control their support and have real choice and power.  There should be reductions in money spent on administration, decision-making and rationing processes.

Understanding current and future needs

When the NHS does not have enough resources to meet the needs it encounters we are able to see this through the existence of waiting lists and then policymakers can respond accordingly. There is no similar measure of shortages in social care. Local authorities should record the needs that they are currently unable to meet to provide similar information. This will make it possible for the Government to work towards filling the gap.

Abolish charges for social care

Social care should be free at the point of use. It is completely unacceptable that people on means-tested benefits have to pay a significant proportion of their already small income for social care support.  The system is particularly unfair towards young Disabled People with high support needs. Reforms must address this problem and stop pushing people into poverty. Charging for social care should end[4].

Enabling Disabled to innovative

Disabled people often feel as if care is done to us and decisions are made for us.  Professionals do not always view themselves as enablers and often regard providing care and support as the end goal.  This can lead to high levels of bureaucracy, lack of trust of Disabled People to make ‘good’ decisions, and rigid frameworks with limited options and over the top monitoring systems.

The experience of people who use direct payments is a particularly troubling example of this. Over the past few years the bureaucratic burden and increasingly rigid requirements imposed by local authorities have left people with additional responsibilities. At the same time these have removed the freedom and control associated with direct payments.  Innovation is not possible without choice and control and therefore reform must promote a radical change in the approach, ensuring that restrictions are removed so that people are truly able to self-direct their support.

[1] See for example Independent Living for the Future – a proposal developed by Reclaiming Our Futures Alliance –

[2] Effectively this means incorporating article 19 of the UNCRPD into UK law.  The Equality and Human Rights Commission has developed a legal model which we believe should be implemented as part of the reform.

[3] For example evidence of how people with learning disabilities and autism are treated in ATUs: Joint Committee on Human Rights (2019), The detention of children and young people with learning disabilities and/or autism

[4] The pucrure of how much individuals are asked to pay for their care is different in the UK nations, for example personal care is free in Scotland.  Local authority charging policies also very a lot, which leads to a post-code lottery.  For example Hammersmith and Fulham Council in London does not charge for homecare at all.