Independent Living for the Future
So long as we live under a system that puts profit before people, we will need to struggle to secure the resources required to support Disabled people to access the same rights and opportunities as non-Disabled people. That struggle will take different forms at different times depending upon the attacks we find ourselves facing and the reforms we consider most urgently needed under particular circumstances. Throughout, it is important that we do not lose sight of the bigger picture that we are fighting for, of a society where each person is valued for their diverse, personal worth rather than their ability to labour and produce profit, and where each person is able to truly fulfil their diverse, personal potential.
As desperate as times currently are, we are sadly a long way off from achieving a society founded upon principles of fairness and social justice. Nevertheless, the demands that we make and the reforms we lobby for must be consistent with that wider vision. The way that the personalisation agenda, sold to local authorities on the basis that it would produce cost savings and tied to the marketisation of social care, has effectively undermined Disabled people’s rights and freedoms is a prime example of the dangers of focusing on reforms in isolation from wider social principles. It is therefore important that Disabled campaigners continuously review our vision and our demands.
Grassroots campaigning by Deaf and Disabled people since 2010 has been focused heavily on social rights, especially on to the right to independent living and being included in the community as set out in Article 19 of the UN Convention on the Rights of Disabled People (UNCRPD).
Article 19 – Living independently and being included in the community
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
This is for a number of reasons:
- Measures imposed through ‘austerity’ and devastating cuts in social care are having serious adverse impacts that directly affect Disabled people’s rights and freedoms in exactly those areas set out in Article 19. Instead of closing Assessment and Treatment Units and moving people with learning difficulties and autism back to their communities, it has become more common for Disabled people to be sent many miles from their homes, families and friends due to a chronic lack of local provision. People with mental health diagnoses may also be sent a long way away for treatment. Local authorities and Clinical Commissioning Groups are introducing maximum expenditure policies which threaten to force Disabled people into residential care against their wishes. The General Comment on Article 19 published by the UN disability committee in 2017 made clear that institutionalisation of Disabled people can also occur in people’s own homes, when their basic needs are neglected and they are denied the support they need to leave the house and participate in the community. The rights to independent living and being included in the community set out in Article 19 provide a clear guide to the rights that Disabled people should be able to enjoy and a measurement framework for progression.
- Austerity measures are disproportionately affecting Disabled people’s right to an adequate standard of living as set out in the UNCRPD. New assessment processes such as the WCA and PIP arbitrarily divide disabled people into the “genuine” and the “undeserving”. These assessments are informed not by Disabled people’s lived experience of impairment, but by insurance companies aiming to limit claims. The huge reduction in financial support available to many disabled people under ESA and PIP reform, combined with delays and failures in the assessment process has resulted in increased poverty and a well-documented deterioration in our wellbeing and quality of life. A number of benefit claimants are being forced to cut down on food and heating, use food banks and borrow money that they are ill-equipped to return, which is traumatising and, in some cases, has resulted in suicide. Current measures seem to have links with a neoliberal approach within which people who are regarded as wealthy, or ‘hard working’ are perceived as worthy in contrast to people with support needs who are viewed as second class citizens.
- There are some acute intersectional issues. Disabled people who have more than one ‘protected characteristic’ under the Equality Act 2010, who experience additional inequalities not covered by the Act (related to socio-economic class, or homelessness, for instance), or have dual diagnoses (including substance addictions) are especially disadvantaged in relation to independent living.
- There are particular issues for Disabled People who are made subject to the Mental Health Act 1983, with people from BME communities often affected particularly badly, and people deemed to lack capacity under the Mental Capacity Act. Some groups of BME service users are particularly likely to experience the controlling rather than supportive aspects of the psychiatric system. The MH Act authorises detention and compulsory treatment for people diagnosed with a (serious) mental disorder when they/others are thought to need protection. This authorisation removes their right under Article 19 to live in the community, choose their place of residence and exercise choices on an equal level with others. Detention and compulsory treatment, whether exercised through an inpatient setting, or a Community Treatment Order, also run contrary both to Article 12 and to Article 14 of the Convention. Thus the UNCRPD Committee has recommended an end both to substitute decision-making and to ‘compulsory treatment and detention of persons with disabilities on the basis of actual, or perceived impairment’. In both hospital and other settings, the UNCRPD guidance also includes an end to the use of physical and chemical restraint. People who are neurodivergent and people with life limiting chronic illness are also subject to detrimental impacts caused by inappropriate referrals to and interventions used on them within the mental health system.
- The language of independent living has been appropriated by Government and public bodies to justify the cuts they are making. Policy documents at national, regional and local government levels repeatedly refer to “helping people to stay independent for as long as possible”, often while simultaneously claiming to be in accordance with Article 19 and yet demonstrating a clear failure to comprehend a concept of independent living based on Disabled people’s right to exercise choice and control over our everyday lives and to access the same chances in life as non-Disabled people on an equal footing. It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. Article 19 rights have thus been co-opted and subverted in order to facilitate the retrogression of Disabled people’s rights.
- The UNCRPD is a tool that Disabled people have used to draw attention to the suffering and distress directly caused by government legislative and policy measures where we have felt listened to and our experiences validated. That gives it an immediate relevance to Disabled people’s day-to-day lives.
- Disabled campaigners are proud of the independent living movement and all that it achieved. At a time when discrimination continues to exist legally, structurally and within many parts of society, daily living conditions are deteriorating and the odds against us seem overwhelming, it is enormously important to be able to draw on a source of pride that sits at the core of our shared identity. It keeps us going, reminding us how powerful we can be and what we can achieve when we collectivise and are determined. The right to independent living as set out in Article 19 gives us a clear and relatively uncontroversial goal to focus on.
There has been recent debate about whether it is useful to still use the language of independent living. We would argue that it is. With certain audiences we are seeking to influence it may be expedient to tailor language in order to be better understood and to convey our messages more effectively, for example referring to cuts to “social care” rather than “independent living support services”. Those are decisions that can be made according to particular circumstances. However, to stop talking about independent living and to shift our focus away from achieving a right to independent living would be a strategic mistake. It would rob Disabled people of one of the few things we have left to hold on to.
If new campaigners come into the movement who are only aware of the appropriation of the language of independent living rather than the proud history of the independent living movement, then it is our job to share our history and learning. We must also remember that the politics of the independent living movement, based as it is on collectivisation and grassroots struggle, will not appeal to all. There is a view that it is better to find a ‘middle way’, acceptable to the status quo than to fight for the fundamental reshaping of society, that is held for a multitude of reasons, some due to internalised oppression and others not, ranging from an absence of hope that real change is possible to a vested interest in maintaining the current system. Where those political differences exist, there will be times when we find common goals on which we can campaign together in the pursuit of reforms to mitigate and alleviate the worst harms, but we must understand them as differences and reflect on our own position within the context of our wider principles and values.
Below we set out our demands for a national independent living service capable of upholding Disabled people’s Article 19 rights and what will need to be in place to achieve it. It has been shaped and developed through ongoing debate and discussion within the Independent Living Campaign, set up in 2011, in response to the then planned closure of the Independent Living Fund (ILF) and most recently through:
- The independent living workshop at the National Deaf and Disabled People’s Summit organised by the TUC Disabled Workers Committee and the Reclaiming Our Futures Alliance in November 2017.
- The 2017 National Independent Living Campaign Conference funded by Disabled People Against Cuts (DPAC) and co-organised with the Reclaiming Our Future Alliance.
- A Reclaiming Our Futures Alliance independent living round table held in May 2018 and follow up email discussions.
Disabled People’s Vision of Independent Living Support for the Future
The social care and mental health systems are in crisis and as a result Disabled people’s rights to an adequate standard of living, to inclusion and equal participation in society are being taken dramatically backwards. Rising levels of charging are increasingly pushing Disabled people out of receiving social care altogether and leading to a growing problem of debt and arrears1. The joint report of the Health and Social Care and Housing, Communities and Local Government Committees on the long-term funding of adult social care says:
“The combination of rising demand and costs in the face of reductions in funding has placed the social care system under unsustainable strain. In its present state, the system is not fit to respond to current needs, let alone predicted future needs as a result of demographic trends.”
Besides urging that research be undertaken into actual and future levels of need and for corresponding investment, Disabled people have long called for the radical overhaul of both the social care and mental health systems in order to better fit a human rights approach to disability. At present, Disabled people’s experiences of independent living and being included in the community differ considerably depending upon impairment, for example people with learning difficulties, people who are neuro-divergent and people with energy-limiting chronic illness (especially medically contested diagnoses like Myalgic Encephalomyelitis 2) are less likely to be found to have eligible needs under the social care system while people living with mental distress are largely confined to a separate system without access to the same sorts of support. Instead, we are arguing for a system underpinned by the social models of disability and distress that can be accessed by all Disabled people regardless of impairment or perceived impairment. Our vision for a national independent living support system would also eliminate the post code lottery that exists within current local authority and CCG administered provision. We believe that all independent living support should be free at the point of need and as the example of free personal care in Scotland has shown this could lead to savings in other areas such as the NHS budget3. By building on what was most successful about the Independent Living Fund which had considerably lower overheads than local authority administered support4, it could also be more cost effective than the current system.Terminology
Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. (See Appendix A).
- Set up an independent living taskforce led by Disabled people to develop proposals for a national independent living support service.
- Explore in co-production with Disabled people the strongest legal frameworks for legislating for Article 19 rights, including enshrining the CRPD in domestic legislation and developing an independent living bill of rights.
- Make a case for investment in independent living support, including evidencing social care as a social and economic generator5 and what wider benefits could be saved from savings to NHS budgets.Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 19.
- Educate the public and promote the benefits of investing in support for Disabled people.
That the right to independent living as outlined in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities becomes reality:
“All Disabled people to have equal rights to live in the community, with choices equal to others, and be fully included and able to participate in the community, through:
- the opportunity to choose their place of residence and where and with whom they live on an equal basis with others, without being obliged to live in a particular living arrangement;
- access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
- community services and facilities, for the general population are available on an equal basis to Disabled people and are responsive to their needs.”
- Social and human rights-based models of disability and distress
- The twelve pillars of independent living
- The National Survivor User Network’s Manifesto
- Article 19 of the United Nations Convention on the Rights of Persons with Disabilities
- The UNCRPD Committee’s General Comment No 5 on Article 19
A new universal right to independent living, enshrined in law and delivered through a new national independent living service co-created between government and Disabled people, funded through general taxation, managed by central government, led by Disabled people, and delivered locally in co-production with Disabled people.
Universal right to independent living
The UN CRPD is not enshrined in UK law and recent case law has weakened its application in interpreting domestic legislation; for example, the judgment in Davey vs Oxfordshire states that “great care must be taken in deploying provisions of a convention or treaty which set out broad and basic principles as determinative tools for the interpretation of a concrete measure such as a particular provision of a UK statute. Provisions which are aspirational cannot qualify the clear language of primary legislation.”6 The inadequacy of the Care Act 2014 to uphold the rights of Disabled people has been proven in practice. Disabled people’s concerns that the “well-being duty” implemented through the Care Act would offer insufficient protection against retrogression of our rights were ignored multiple times in the development of the legislation. Our petitioning for a right to independent living as outlined by Article 19 of the UN CRPD to be placed on the statute through the Care Act was dismissed and although the statutory guidance refers to Article 19 (para 1.19), this does not have the legal weight needed to be effective. In addition, it has not been co-ordinated well with provision for mental health service users such as the Care Programme Approach.
We call for new free-standing legislation to implement an independent living bill of rights, drawn up in consultation with organisations of Disabled People and enshrining their recommendations. This legislation would be in accordance with the UNCRPD Committee’s General Comment on Article 19, including its call to end detention, substitute decision making and compulsory treatment and to put a focus on intersectional issues too. The legislation would also cover rights to support which enable Disabled people to access the same life chances as non-Disabled people in all areas covered by the twelve pillars of independent living.
Disabled people’s rights under the new legislation will need to be communicated in accessible ways, with an appeals process, legal aid, legal status and legal support made available for Disabled people who consider their rights to have been breached.
This legislation should apply to all Disabled people who are resident in the UK, regardless of citizenship or asylum status.
National independent living service
The social care element of Disabled people’s right to independent living will be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people. It will be provided on the basis of need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation.
It will build on and learn from the success of the Independent Living Fund, closed by the coalition government in 2015, and the failures of the local authority care and support system. It will also learn from the experiences of user-led Disabled people’s organisations (DPOs), including those run by people experiencing intersectional discrimination and disadvantages, user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-Disabled allies who share the critique of the existing system and who work to the social models of disability and distress.
The national independent living service will be responsible for carrying out assessments and reviews and administering payments to individual Disabled people. Individuals will not be obliged to manage their support payments themselves if they choose not to. Alongside establishment of the national independent living service will be investment in local service provision so that within each area Disabled people will be able to choose from a range of peer support options delivered by user-led Disabled people’s organisations and co-operatives wherever they live. These services will support them to exercise choice and control over the support they receive and to manage their financial, administrative and employment responsibilities including legal duties as employers. Local Disabled people will be meaningfully involved in investment and commissioning decisions, as well as in researching and monitoring how well provision is meeting need. Disabled people who are involved in these processes will also be demographically representative.
The national independent living service will be located in a cross-government body which can ensure awareness of and take responsibility for implementation plans in all areas covered by the UNCRPD’s General Comment on Article 19 and by the twelve pillars of independent living, whether it be in transport, education, employment, housing, or social security. The cross-government body will also be responsible for ensuring that intersectional issues are adequately addressed. Rather than being ghettoised in the DWP as the Office for Disability Issues is at the moment, this will ensure that independent living is mainstreamed in every area of activity as an equalities issue rather than seen primarily as a work and benefits issue.
- Co-created with Disabled people
The national independent living support service will be co-created with Disabled people through an independent living task force led by Disabled people who need/use independent living support.
The service will be designed to be anti-discriminatory, challenging current discriminations on the basis of age, ethnicity, sexuality, gender, class, culture, disability and distress. This will include diversity and inclusion at all levels including organisations of Disabled people and structures led by Disabled people involved in delivery of the service.7Funded through general taxation
Social care should not be funded through set precepts or levies as evidenced by the difficulties encountered in Australia with their National Disability Insurance Scheme8. Funding through general taxation allows greater flexibility to respond to changing levels of need. This could be done, as advocated by a number of recent reports,9 through “soft” hypothecation, for example a rise in National Insurance that the public understands is in order to adequately fund social care. There is much evidence that the public would be in favour of tax rises in order to fund the NHS and social care, however there is also evidence that the public vote for lower taxes and the creation of a specific levy earmarked for social care has the disadvantage of insufficient flexibility to match demographic changes. Pinpointing tax rises to cover specific areas can also be problematic in that it places the spotlight on particular groups. Funding for social care should as with the NHS be out of general taxation. Managed by central government
The national independent living support service will build on lessons learned from the Independent Living Fund in being independent of Local Authorities and CCGs. This will eliminate the current postcode lottery, which has increased since closure of the ILF10, and enable greater transparency and accountability to Disabled people.Led by Disabled people
The governance of the national independent living support service will ensure that Disabled people are involved and have a meaningful say at all levels of decision-making with a governing body that is made up of a majority of Disabled people. Structures will limit the involvement of non-user led charities and disability organisations.
- Delivered locally
Alongside the establishment of a national independent living support service, there will be investment in the development of Disabled People’s Organisations delivering local services in response to need and ensuring that a range of options are available to support Disabled people to live in the community and exercise choice and control over the support they receive.
User-led organisations will be resourced to provide support that enables equal participation in society across all areas of Disabled people’s lives, including Access to Work11, housing12, social security and financial advice and wide-ranging service and resource provision.However, there must be monitoring mechanisms to ensure that local delivery does not deny the nationally uniform status of the entitlement to support, so that for example disabled people can move to different areas without any loss, or threat of disruption, of funding or support services.
Service provision will include a full range of alternatives to the “white western medical” model approach, psychiatric medication and clinical treatments which are prevalent in mental health services and to the re-defining of service user concepts such as recovery in clinical terms. There will, too, be a wide range of resources which are important to Disabled people who are currently disadvantaged by shortfalls in intersectional provision.
Features of a national independent living support system designed to uphold Disabled people’s rights
The national independent living support service will be co-created with Disabled people so its features will be decided by them. However, the features below reflect ideas that would address the current barriers experienced by adult social care service users.
In place of eligibility criteria, the service will provide support on the basis of meeting need where it exists so that all Disabled people experiencing issues that have a significant impact on their ability to live independently and be included in the community receive the self-identified support they need. Under the current system of eligibility criteria certain impairment groups are effectively excluded from social care support, for example people living with chronic illness and mental distress. Meeting wider needs saves money in the long-term by preventing crises and lessening the strain on acute services.
Assessments and support plans
Assessments should take the self-identified needs of the Disabled person as their starting point and self-assessments should be available to all who prefer this option.
Assessments should be proportionate, without compromising the dignity of the Disabled person or being overly intrusive, and to be designed and carried out with the aim of genuinely assessing need rather than looking for ways to make cuts.
Assessments should consider all areas of a person’s life including the ability to socialise and participate in the community on an equal footing with non-Disabled people, and to take part in education, volunteering and employment, and not focus solely on personal care. Equally, they should not be based upon the current approach that views employment as good for every Disabled person, regardless of the realities of their impairment and the disabling barriers they face.
Assessments and assessment reports should be respectful of the Disabled person concerned and of the Disabled person’s account of their impairment and their needs, even if this is not validated by or is at odds with medical report or diagnosis. There should be a clear distinction between assessments of need and support plans. Support plans should be based on the wishes of the Disabled person even when they disagree with the assessor’s recommendations. People should have the right to turn down services offered that they do not want or consider appropriate.
One-size fits all support packages such as reablement or intermediate care can be completely inappropriate, and indeed, harmful for people with energy-limiting chronic illness. Reablement should never be the default response to presenting care needs, nor a necessary gateway to accessing long -term support. Reablement services should only be offered if a Disabled person fully understands the concept and agrees that being supported to do more for themselves could increase function and wellbeing.
Support planning has to be genuinely co-productive. Disabled people should be supported to fully participate in this process.
Disabled people’s wishes and views on how their needs can best be met should not be over-ruled by a desire to cut costs, for example replacing support with technology or aids and adaptations in circumstances where they would reduce the Disabled person’s quality of life.
Assessments for the new national independent living service will be delivered by employees of the service itself and will not be outsourced.
Support package awards
Flexibility should be given in how payments for support can be spent, with no blanket restrictions (such as not providing night support; not funding costs for Personal Assistants accompanying Disabled people on activities; not allowing build–up of contingency funds). Disabled people’s support packages must pay enough for:
Disabled people’s support packages must cover all costs associated with managing the package and pay enough for:
- Hourly Personal Assistant rates that reflect the skills and experience needed for the role and are in line with NHS pay scales and increase in line with inflation.
- Pension contributions and sick pay scheme.
- Compliance with the National Minimum Wage.
- Increase in line with inflation.
- Paid training opportunities for Personal Assistants and training for Disabled people in managing Direct Payments and managing staff.
- Support from local services with supervisions, management and conflict resolution.
- Contingency funding for periods of temporary greater need (e.g. when recovering from an operation or short-term health problem) and for temporary cover for absence of PAs due to illness or other emergencies or for if PAs resign/have to be dismissed and replacement PAs cannot be recruited immediately.
There will be no caps on how much support can be funded to support an individual to live and participate in the community.
Disabled people will not be charged for, or have to make any financial contribution towards, the support they receive through the national independent living support service.
Disabled people will have the choice to act as individual employers or to appoint local services to act as legal employers for the Personal Assistants they recruit and supervise and be responsible for administration and payroll. The costs of using administrative and payroll services of an adequate standard and quality will be covered in the independent living support awards that Disabled people receive.
Payment Cards should not be presented as the only or default option for spending support package funds as this limits choice and control while diverting substantial funds to the companies running the card services. 13
Investment in local user-led services, including those led by people experiencing intersectional discrimination, responding to local need and the provision of services are informed by the views of local Disabled people from all demographic backgrounds will ensure that a range of support options are available.
This will include:
- Peer Support Forums14, training, information and support for Disabled people using the independent living support service.
- Direct Payment management, employment support and payroll services.
- Independent advocacy.
- Social security and financial advice.
- A range of therapeutic provisions, including a wide variety of non-medical alternatives and culturally appropriate options.
- Independent living aids, adaptations and assistive technology.
Monitoring must be proportionate, and be closer to the monitoring systems that were employed by the ILF than the burdensome and intrusive monitoring mechanisms used by local authorities. The National Independent Living Support Service must also be efficient and timely in its processing of monitoring information, again by contrast to common practice within local authorities.
Reviews should take place not more frequently than once every 3 years unless circumstances change and unless requested by the Disabled person. Disabled people should not be burdened with being repeatedly forced to re-tell and explain how disability impacts on their lives; nor continuously repeat their independent living needs. This would allow the service user to forward plan their lives and the service provider is not snowed under with case work.
Where possible assessors should hold client lists, this allows for continuity, for both parties. Where a disabled person requests a review, say for a change in circumstances, there need to be easy to access mechanisms in place. Reviews, where practicable, should be carried out by the original assessor.
There must be a transparent and accessible complaints and appeals system for Disabled people who are dissatisfied with the service they receive or decisions made by the National Independent Living Support Service. This must also be a system which Disabled people find satisfactory in resolving concerns that they have raised.
Once assessed and an independent living package is put in place, this package should be portable. If a disabled person wishes to move, for personal, health or employment reasons, and if their support needs have not altered, then they should not be forced to go through the assessment process again.
Steps to achieving our vision
- Office for Disability Issues to be placed within either the Cabinet Office or the Government Equalities Office to give it more reach across different Government departments.
- Formation of an independent living taskforce with a meaningful influence, led by Disabled people from all demographic backgrounds who need/use independent living support.
- Funding to make a case for investment in independent living support, including evidencing social care as a social and economic generator and what wider benefits could be saved from savings to NHS budgets.
- Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 1915.
- Funding of user-led research into alternative service options and culturally appropriate resources for Disabled people.
- A communications strategy for raising awareness about what we mean by independent living, Disabled people’s human rights and the role of Personal Assistants.
- Dealing effectively with stigma against Disabled people whether at political, commissioning, or service levels, or within society as a whole.
- The funding of adequate training for government personnel, commissioners and service providers about the meaning of independent living and its value, led by Disabled people
- A strategy for investment in local user-led provision alongside closure of institutionalised, segregated settings including long stay hospitals and Assessment and Treatment Units.
- Fund work to draw up a case for investment in Access to Work, evidencing the level of return on investment to the treasury for every pound spent on AtW.
- A review of Access to Work with a view to:
- Overhauling the scheme to make it fit for purpose, significantly reduce administrative and financial errors, address lack of training and hostile attitudes from AtW advisors towards customers, and replace the current mentality of gatekeeping with a concern to adequately support Disabled people,
- Identifying current problems experienced by existing and prospective customers and ways to make improvements
- Ensuring provision of a supportive and effective service for Disabled customers
- Expansion of the scheme to support volunteering and work experience
- Improved scope for Disabled people who cannot work regularly to undertake small and occasional pieces of paid employment without their benefits being at risk.
- Rolling it into the new national independent living support service.
Legislative and treaty change
- Legislate for a free-standing right to independent living that includes an adequately resourced right to inclusive education.16
- Implement the appeals process under the Care Act 2014.
- Bring into force Section 1 of the Equality Act 2010 to introduce a socio-economic duty on public sector bodies and dual discrimination provisions.
- Reverse the changes to legal aid that have restricted eligibility for Disabled people.
- Remove UK reservations and interpretative declaration on Articles 24 of the United Nations Convention on the Rights of Persons with Disabilities17.
- Amend the Mental Capacity Act 2005 to give full human rights to Disabled people and their families and to ensure that ‘best interest’ decisions made reflect the will and preferences of Disabled people and introduce an accessible system for people to challenge decisions made about them.
- Bring detention, substitute decision-making and compulsory treatment to an end for all Disabled people.
Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. This includes:
- People physical, mobility or sensory impairments
- People who are Deaf
- People with learning difficulties/disabilities
- People living with mental distress
- People are neuro-divergent
- People living with chronic illness and long-term health conditions.
We recognise that not everyone within these groups identifies as Disabled and respect that not everyone with these experiences considers themselves to have an impairment. There is certainly need for wider discussion and debate on these issues, however for this paper we have taken the position that what unites us all are the disabling barriers and experiences of oppression that we face and we therefore use the term “Disabled people” to refer to all of us.
For more information on the social model of disability and cultural model of Deafness see: https://www.inclusionlondon.org.uk/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/
The 12 Pillars of Independent Living
• Appropriate and accessible information
• An adequate income
• Appropriate and accessible health and social care provision
• A fully accessible transport system
• Full access to the environment
• Adequate provision of technical aids and equipment
• Availability of accessible and adapted housing
• Adequate provision of personal assistance
• Availability of inclusive education and training
• Equal opportunities for employment
• Availability of independent advocacy and self-advocacy
• Availability of peer counselling
The twelve pillars were developed by Hampshire Coalition of Disabled People building on seven action points, originally devised by the Derbyshire Coalition of Disabled People, which identified the barriers to independent living and how they can be removed:
Disabled people require information on what is available to assist with independent living.
Disabled people need the support of other disabled people to discuss how to make best use of the information obtained and for ongoing support.
Disabled People need accessible housing. This may be in terms of wheelchair access or in terms of support and advice in relation to having one’s own accommodation.
Many disabled people need particular types of practical equipment to assist them in living independently.
This is the one to one support that some disabled people need to live in their own home and be part of the community.
This may mean improved public transport in terms of physical access, information about the routes, more assistance for passengers who are unsure about using public transport, and improved routes to take into account the issues for disabled people. It may mean access to personal transport such as the use of cars or support to use other forms of transport.
The most obvious examples concern physical access such as dropped kerbs, level entrances to buildings and provision of accessible public toilets. However, access goes much further than this. There are barriers created by systems, practices and attitudes which prevent disabled people from participating, for example, excluding people with mental health needs from public meetings.
European Network for Independent Living (ENIL) Principles
1. Independent living is a process of consciousness raising, empowerment and emancipation. This process enables all disabled people to achieve equal opportunities, rights and full participation in all aspects of society.
2. Disabled people must be able to control this process individually and collectively. To achieve this goal, we provide peer support and use democratic principles in our work.
3. As equal citizens we must have the same access to the basics of life including: food, clothing, shelter, health care, assistive devices, personal support services, education, employment, information, communication, transportation and access to the physical and cultural environment, the right to sexuality and the right to marry, to have children, and peace.
4. The Independent Living Movement must be a cross disability movement addressing the needs of all disabled persons. In order for this to occur we must rid ourselves of any prejudice we have towards disabled people other than our own and encourage the involvement of disabled women and other under-represented groups. Disabled children should be enabled by their families and society in general to become independent adults.
5. Disabled people must obtain all the requirements for equalisation of opportunities and full participation by defining their own needs, choices and degree of user control.
6. The Independent Living Movement is opposed to the development and maintenance of systems which promote dependency through institutional responses.
7. Disabled people must involve themselves in research and development, planning and decision making at all levels, in matters concerning their lives.
The National Survivor User Network’s Manifesto
Our Voice Our Vision Our Values
We aim to:
1. Address the injustice and harm that have been caused by cuts to public funding and changes to the benefits system
2. Make the policy of ‘getting the right support, at the right time, in the right place, from the right person’ a reality
3. Pressure mental health services to make the principle of ‘nothing about us without us’ a reality at all levels, through meaningful involvement in decisions about our own individual care and genuine co-production to develop services
4. Work together with people from socially deprived and marginalised communities to determine their support and develop alternatives
5. Challenge institutionalised discrimination and put equality back on the agenda for mainstream mental health services
6. Call for a reform of the Mental Health Act 2007 to make it fully compliant with human rights and ensure that people are not harmed or abused
7. Reflect the social model of disability and promote informed choice and alternatives to medication 8. Reclaim, challenge and revive survivor knowledge and research
8. Reclaim, challenge and revive survivor knowledge and research.
To see the full manifesto go to: www.nsun.org.uk/our-manifesto
Inclusion London Briefing on the UNCRPD’s General Comment no 5 on Article 19: Living independently and being included in the community
To read the full text of the General Comment go to: https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx
In August 2017 the UN disability committee published a “general comment” on Article 19. General comments provide an interpretation of the provisions of a treaty. In this case the treaty is the Convention on the Rights of Persons with Disabilities (UNCRPD).
The following points made within the General Comment are useful to note for campaigning within the context of the current situation facing Disabled people in the UK and the right to independent living
Investing in independent living is cost effective because it reduces poverty and therefore the dependency of Disabled people. – Para. 5
There are NO exceptions to whom the right to independent living applies
Emphasis of the importance of addressing intersectional issues. – Para. 15
The General Comment criticizes “Inappropriate decentralization, resulting in disparities between local authorities”. – Para. 15(k)
Independent living should not be interpreted solely as “the ability of carrying out daily activities by oneself”. – Para. 16(a)
Article 19 recognises the importance of a “full social life” within the right to independent living including all “spheres of social life” such as cultural, political and leisure activities and “shopping”. – Para. 16(b)
Institutionalisation is not limited to people being kept in long stay institutions but includes where Disabled people are confined in their own homes, isolated and effectively segregated, unable to access the community due to lack of funding in personalised support options. – Para. 16(c)
The obligatory sharing of personal assistants is mentioned a number of times as contrary to the right to independent living. – Para. 16(c)
Funding for personal employment must take into account “human rights standards for decent employment”. – Para. 16(d)(i)
Where a State party introduces measures which regress Article 19 rights in response to economic or financial crisis the State Party is “obliged to demonstrate that such measures are temporary, necessary and non-discriminatory”. – Para. 43
“State parties must ensure that private institutions are not established in the guise of “community living.”” – Para. 51
The availability of accessible and affordable housing is crucial for de-institutionalisation. – Para. 53
It is against Article 19 to exclude Disabled people who require higher levels of support and have more complex needs. – Para. 60
All personnel working in relevant areas including “civil servants monitoring services” need to be adequately trained on independent living, both training and practice. – Para. 65
An end must be brought to substitute decision-making and involuntary institutionalization. – Para. 83
There must be mechanisms to allow Disabled people to appeal against decisions concerning independent living and “substantial” rights to legal aid must be in place. – Para. 82
Independent living in inherently linked to inclusive education. Para. 89
An investigation by GMB union has revealed at least 166,000 people are trapped in debt for their social care. http://www.gmb.org.uk/newsroom/social-care-debt
Action for ME (2015) Close to collapse: an interim report on access to social care and advocacy for people with ME/CFS
Both the Joint Committee report and the recently published Lord Darzi Review into Health and Social Care recommend the introduction of free personal care.
4 According to the final annual report and accounts of the ILF from end of March 2015, the Fund had a 98% service user satisfaction rate and just 2% of the budget was spent on administration.
Beresford, P. (2016), All Our Welfare: Towards participatory social policy, Bristol, Policy Press.
Davey, R (on the application of) v Oxfordshire County Council & Ors  EWCA Civ 1308 (01 September 2017) Paragraph 62.
Building on work developed by Shaping Our Lives looking at overcoming barriers to more inclusive user involvement : http://www.invo.org.uk/beyond-the-usual-suspects-towards-inclusive-user-involvement/
The NDIS was financed by an increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of taxable income. This has proved to provide be insufficient funding, and there are now concerns of a lack of public will for an increase.
9 Long-term funding of adult social care – First Joint Report of the Health and Social Care and Housing, Communities and Local Government Committees of Session 2017–19
Citizens’ Assembly on Social Care: recommendations for funding adult social care
The Lives we want to Lead: the LGA green paper for adult social care and wellbeing – July 2018
The Lord Darzi Review of Health and Care Final Report: BETTER HEALTH AND CARE FOR ALL A 10-POINT PLAN FOR THE 2020s, Institute for Public Policy Research; Lord Darzi June 2018
See Inclusion London’s report “One Year On: Evaluating the Closure of the Independent Living Fund”
So long as Access to Work remains separate – we favour these being rolled into the new independent living service.
12 We also favour Disabled Facilities Grants being eventually rolled into the new independent living service.
A report from the Independent Living Strategy Group found that over a million pounds a year is spent on fees and costs to operate the cards and that an estimated £1.5 million has been spent by 71 local authorities introducing the schemes.
These should focus on building peer support communities and not take the form of professionalised one to one peer support.
Both the Joint Committee report on the long-term funding of adult social care and Lord Darzi’s review of Health and Social Care recommend a need for data modelling.
The UN Disability Committee’s General Comment No. 5 on the Right to Independent Living and Being Included in the Community made clear that inclusive education is an integral part of Disabled people’s rights under Article 19. The UK government continues to have a reservation on Article 24 and maintains its position of offering segregated education as a “choice”.
Article 24 is the right to inclusive education.