Written evidence submitted by Reclaiming Our Futures Alliance [ASC 026]

Reclaiming Our Futures Alliance (ROFA) is an alliance of Disabled People and our organisations (DPOs) in England who have joined together to defend Disabled people’s rights and campaign for an inclusive society. ROFA fights for equality for disabled people in England and works with our sister organisations across the UK in the tradition of the international disability movement. We base our work on the social model of disability, human and civil rights in line with the UN Convention on the Rights of Persons with Disabilities (CRPD).

• How has Covid-19 changed the landscape for long-term funding reform of the adult social care sector?

The pandemic has revealed the life and death situation facing our community.  60% of Covid-19 deaths have been disabled people while we make up around 20% of the population[1].  People with learning difficulties are 30 times more likely to die from Covid-19 than non-disabled people of the same age[2]. 

 Eleven years of austerity and cuts to social care has left many disabled people in poverty, without services, prisoners in their own homes and some have lost or had their lives cut short[3].  Covid-19 has accelerated this situation as seen in the extreme financial crisis in Croydon and other councils facing bankruptcy and having to be ‘bailed out’ by Central Government[4].  This is just another expression of the Governments contempt for the local services we rely on for our care and independence.  ROFA believes there are few local authorities in England that are meeting their legal duties under the Care Act and that was before Covid-19 hit. The recent judicial review judgement against Norfolk County Council Adult Social Care for discriminatory charging for social care is a clear example of how widespread the disregard for the Care Act by Local Authorities goes[5].

There is also no evidence that austerity has ended, if anything it has accelerated particularly in local government[6].

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), which the British Government has signed and ratified[7].

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[8]. 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[9]. The General Comment on the UNCRPD, Article 19 published by the UN Disability Committee in 2017, made clear that the 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[10]. 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.

• How should additional funds for the adult social care sector be raised?

Funding for social care should, as with the NHS, be out of general progressive taxation. This allows greater flexibility to respond to changing levels of need. This could be done, as advocated by a number of recent reports, through “soft” hypothecation, for example a rise in National Insurance that the public understands is in order to adequately fund social care[11]. 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[12].  Pinpointing tax rises to cover specific areas can also be problematic in that it places the spotlight on particular groups. Social care should not be funded through set precepts or levies as evidenced by the difficulties encountered in Australia with their National Disability Insurance Scheme[13].

• How can the adult social care market be stabilised?

Only by taking social care into a national independent living support service managed by central government alongside the NHS in the public and the not-for-profit sector will stability be achieved.

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.”[14]

Underlying principles

•             Social and human rights-based models of disability and distress

•             The twelve pillars of independent living

•             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

Core demand

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, free at the point of need/delivery, managed by central government, led by Disabled people, and delivered locally in coproduction with Disabled people in the public/not for profit sector.

Universal right to independent living

The UN CRPD is not enshrined in UK law and 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.”[15]

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.

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.[16]

• How can the adult social care market be incentivised to compete on quality and/or innovation?

Our vision is that 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 and DPOs. 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 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.

The national independent living support service will be responsible for supporting disabled people through the self-assessment/assessment process, 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 the establishment of the national independent living support 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 DPOs 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.[17]

April 2021