INCLUSION LONDON – WRITTEN EVIDENCE (ASC0108)
Inclusion London welcomes the opportunity to submit evidence to this inquiry.
IL is a London-wide user-led organisation which promotes equality for London’s Deaf and Disabled people and provides capacity-building support for over 70 Deaf and Disabled People’s Organisations (DDPOs) in London. Through these organisations, our reach extends to over 70,000 Disabled Londoners. We used consultation documents in accessible formats to consult with our members.
The invisibility of social care and its consequences
Social care is a complex system which is difficult to understand and navigate. The legal framework is set out by national government, but the support is delivered and funded by local authorities, who make all decisions in individual cases and about the support services in their area. This leads to variations in the individual’s experiences and a very low national profile for social care as opposed to the NHS - a centrally funded system. People who are not in direct contact with social care system either as those who draw on it or as professionals who work in the sector do not know what social care support is, how it works and who receives it.
Social care support is largely regarded as support to meet basic personal care needs of older people as opposed to support to ensure people can live a normal life with equal choices and rights. The support is delivered either in close institutional settings, like care homes or in people’s own homes.
Due to limited resources and the years of austerity and cuts local authorities are focusing support on meeting personal care needs, even those recipients of support who live in community are isolated in their homes and are rarely seen by general public.
Those people who receive social care support – Disabled people – often find that their voice is unheard in the debate about social care, which is often dominated by professionals and organisations that provide services, as opposed to organisations run by those who draw on care. This has been our experience. Inclusion London repeatedly, asked DHSC to engage with us and with other Disabled People’s Organisations in engagement about social care reforms. We had one meeting with civil servant to discuss engagement and not substantive issues. As far as we are aware this has been the experience of other DPOs.
Individuals receiving social care support often face barriers to engagement. Inclusion London on many occasions had to argue with local authorities in London about accessibility of their consultation, we had to persuade them to hold meetings and engage with individuals in alternative ways to just collecting written submissions.
Effective influencing is often achieved by people coming together, those who use social care support often experience barriers to self-organising, joining together and campaigning for change. Disabled People’s Organisations traditionally played a pivotal role in supporting self-organisation and politisation of Disabled people. DPOs traditionally provided advice, peer support, opportunities for leadership and connection with people who share similar barriers. However in the last 10 years DPOs faced significant financial and structural barriers, many organisations had to purely focus on service delivery to survive.
Key challenges for those who draw on care
Difficulties getting the support: with ADASS survey showing more than half a million people currently are waiting for an assessment, review or support to begin. Age UK has estimated that 1.5 million disabled older people in England are not getting the social care support they need. Between 2015/16 and 2019/20, 120,000 more people requested social care support but around 14,000 fewer people received either long- or short-term support. ADASS survey also shows that thousands of hours of home care are not delivered because of staff shortages. We know of many Disabled people in London on direct payments, who are living without support, because they are unable to recruit. Therefore they are not able to spend their direct payment and the local authority after 3 months or less simply claws back the direct payment money.
The support people get does not meet the needs: The Care Act enables local authorities to decide about the best support to meet eligible needs. Local authorities are entitled to go for the cheapest option. We often come across cases where in reality the cheapest option does not meet the needs or even actively undermines person’s wellbeing. We see an increase and a greater push to replace human support with technology or equipment solutions. For some people this could lead to huge benefits, but for others those solutions are inappropriate, unacceptable and violating their dignity.
The support people get is minimum, it only focuses on meeting most acute needs, often personal care needs and not the needs associated with living in the community, forming relationships, obtaining employment or education. This leads to increased isolation and mental distress. Some Disabled mothers, are subjected to child protection proceedings instead of local authority providing social care support for them as Disabled mothers.
Poverty: Social care means test looks at both capital and income. And people with no capital whose income only comes from means-tested and Disability benefits have to pay for care. Some have to give up to 40% of their benefits income to pay for essential care they need. Many people have to choose between heating and eating and are made to live on £23 per day. The government estimates that 90% of working age social care users receive means-tested support, however it is not clear there is data on how many Disabled people are forced to give up their benefits income to pay for care. We know anecdotally that charging forces many people to go without care, simply because they cannot afford it. This leads to their needs deteriorating even further. The data about the numbers of people who refuse care after financial assessment is not routinely collected.
The existing means-test is particularly discriminatory for people with high support needs, those who have little prospect of finding a job and supplementing income through work. Recent figures from six LAs indicate that there could be more than 100,000 Disabled people in social care debt across England.
Difficulties in challenging decisions: The Care Act 2014 does not give sufficient power to the individual. Although the Act requires authorities to pay regard to the need to promote individual’s wellbeing, it is not up to a person to decide what would and what would not promote their wellbeing and therefore when disagreements arise the local authority is given the ultimate power to decide what person’s needs are, what would promote person’s wellbeing and how the needs should be met. There are no effective mechanisms for individuals to resolve those disagreements. There is a huge lack of independent advocacy and even bigger shortages of independent social care advice. Although the Care Act includes the power for the Secretary of State to introduce an appeals system, this has not been done. There is no effective mechanism for individuals to scrutinise and dispute professional decisions taken by social workers. Complaints procedures do not allow independent scrutiny and both ombudsman or administrative courts are not designed to scrutinise the merits of professionals decisions.
Covid 19 pandemic demonstrated the lack of understanding and lack of regard for social care and those who use it. The Coronavirus Act introduced the Care Act easements, to release local authorities of their legal duties at the time when Disabled and older people struggled to get basic necessities and experienced collapse of their usual support. Within social care system resources, funding, PPE and other support were prioritised for residential care and those receiving care at home were largely forgotten. During the pandemic, social care support was reduced or suspended. Anecdotally, we heard that LAs would not increase funding to help Disabled people requiring extra support due to lockdown conditions. Many PAs could not go to work in DDP’s own homes because of lack of access to PPE or because they were self-isolating. This contributed to the 50% rise in deaths among Disabled people living in the community in receipt of social care support from April 2020 – March 2021. Of the 25,000 deaths, data suggests only 8.7% were COVID-19 related.
Key changes we want
We believe social care must be viewed differently and reformed accordingly. Social care support is essential support that enables older and Disabled people to live a normal life. Social care support therefore must promote the rights to independent living as defined in article 19 of the UN Convention on the Rights of Persons with Disabilities. We campaign for the introduction of National Independent Living Service – a vision developed by Disabled people and Disabled People’s Organisations. It is based on the principle of the right to independent living.
Adequate sustainable Investment: Real-terms LA spending on social care was £700 million below what it was in 2010/11. People should receive the care and support they 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 the progressive realisation of the right to independent living under the UNCRPD.
The funding and investment must be spent on services that Disabled and older people want and need – services that comply with standards set out in the UNCRPD. Currently money is often wasted on services that do not support choice, control and inclusion.
Legislative reform giving people more power and supporting inclusion: The Care Act has not been implemented properly. The Care Act has failed to prevent often severe cuts to support or the imposition of needless red-tape on those using direct payments. In our experience local authorities’ decision-making about eligibility and best ways to meet needs are resource driven and often mean that Disabled people are denied the power to make decisions about their own needs, support and wellbeing. Sometimes councils often make life changing decisions with very little accountability and with few opportunities for decisions to be challenged. We believe the law must be strengthened to guarantee Disabled people the right to choose where they live and with whom, to get the care and support they need to lead full lives, to be supported to live in the community and to access community activities like everybody else, in line with UNCRPD.
Abolishing social care charging: We believe forcing people to pay for essential support they need to live a life is wrong. Social care must be free at the point of need like the NHS. In the interim the government must urgently increase the Minimum Income Guarantee – the amount of money people should be left with after paying for care. The Care Act gives local authorities a power to introduce more generous charging policies. Hammersmith and Fulham is the only local authority in England that does not charge people for home care at all. Inclusion London’s research shows that out of 32 local authorities in London, 21 operate MIG at minimum levels set out by the Department of Health and Social care, leaving people with highest support needs to live on £155 per week.
Greater freedom to innovate and reducing bureaucracy: 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, suspicion 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. We witnessed local authorities in London changing their direct payments agreements, imposing rigid restrictions and monitoring requirements. Many of which are not accessible and therefore individuals have to use the support hours they get to meet their care needs to help them navigate the monitoring systems. Those changes have left people with additional responsibilities while slowly removing the freedom and control associated with direct payments. Innovation is not possible without real choice and control. Therefore those who self-direct their support must be allowed to use their support flexibly and in ways that best suit them.
Coproduction: Changes that led to radical improvements for those who use social care, such as person cantered planning, personal budgets and direct payments were developed by Disabled people ourselves. Those of us who use social care are best placed to say and know what support we need and how it should work. This is why we have been calling for co-production at local and national level.
Hammersmith and Fulham – a local authority in London which is implementing co-production approaches to rreshape their social care support.
27 May 2022
 Inclusion London’s research showed that 1 in 4 DPOs had to close since 2022. Currently the sector is hugely under-resourced and faces significant barriers to getting heard. Understanding the Needs of Disabled People’s Organisations in England, Inclusion London, 2021, available at https://www.inclusionlondon.org.uk/uncategorised/understanding-the-needs-of-ddpos-in-england/
 Age UK. Written evidence submitted by Age UK [ASC 055]. Available at: https://committees.parliament.uk/writtenevidence/25880/html/ Accessed on: 15.03.22
 See case studies about the impact of charging here: https://www.inclusionlondon.org.uk/news/please-help-us-make-social-care-charging-reforms-fair-for-all/
 This was confirmed in the High Court judgment in R (SH) v Norfolk County Council and Secretary of State for Health and Social Care  EWHC 3436 (Admin
 Pring, J. (2022).: https://www.disabilitynewsservice.com/tens-of-thousands-driven-into-debt-by-care-charges-new-figures-show/ 2
 Our report highlighting Disabled people’s experience of Covid includes examples of how support systems disappeared for those who receive social care support at home. Report available at https://www.inclusionlondon.org.uk/wp-content/uploads/2020/06/Abandoned-Forgotten-and-Ignored-Final-1.pdf
 Gayle, V., Hamada, R., Boutaud, R. (2021). Revealed: Thousands more deaths in home care during pandemic. The Bureau of Investigative Journalism, [https://www.thebureauinvestigates.com/stories/2021-05-10/revealed-thousands-of-pandemic-deaths-in-home-care
 More detail about our vision could be found here: https://www.inclusionlondon.org.uk/wp-content/uploads/2019/06/NILSS_final.pdf
 The King’s Fund (2019). More people asking for social care support but fewer getting it as demand leaves social care system at crisis point. [press release], 26 April. Available at: https://www.kingsfund.org.uk/press/press-releases/social-care-system-crisis-point Accessed on: 15.03.22
 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
 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. https://www.equalityhumanrights.com/en/publication-download/strengthening-right-independent-living