Written evidence submitted by Disability Rights UK (ASC0041)
Introduction
Disability Rights UK (DR UK) is a national organisation led and run by Disabled people for Disabled people. Our vision is a world where Disabled people have equal rights, opportunities, and access to power. Our work is rooted in the lived experience of Disabled people. We are a membership organisation and work closely with other organisations led by Disabled people, across the UK.
We aim to empower young Disabled people with knowledge on their rights and an awareness of their options. This response will focus on how the social care system affects young Disabled people.
The system of social care in England is utterly broken. It fails millions of Disabled people of all ages by denying us support, providing us with inadequate levels of support, and providing us with harmful and oppressive support in closed settings. Many Disabled people die before they receive social care. The current system doesn’t enable us to develop, flourish, and lead full lives. Rather, it rations help, puts minimum levels of care in place, and charges people with scant resources.
What is the cost of inaction to individuals and how might people’s lives change with action on adult social care reform?
Growing population
Inaction to fix the adult social care system comes at a time when the Disabled population, particularly that of young people (18-25), grows. In the last 10 years the largest increases in the proportion of the population identifying as Disabled have been in people aged 16 to 24, among whom reported disability prevalence has more than doubled from 8% to 17%.
The 2021 Census showed the number of girls and young women aged 10 to 19 declaring a disability almost doubled and among those aged 20 to 24 it almost tripled in England to 15%. The census results also showed that people were twice as likely to be disabled in the most deprived areas of England compared with the least deprived. A rising population will create a growing demand for services, and recent figures show a 16 per cent increase in people using NHS mental health services, and with a 30 per cent rise in use in under-18s. The number of children in need of social care support continues to rise, with in the last decade, seeing at least a 7% in what CIPFA describes as "children in need".
A growing population of Disabled young adults means that the number of people needing care is generally expected to continue to rise until 2040. The Health Foundation highlighted PSSRU's calculations of:
Unmet need
The foundation's research further highlighted that the unmet need is growing. There was a 10% increase in the number of younger adults requesting social care support over the four years preceding 2019 compared with a 4% increase among older people, and around 35% of requests for support made by younger adults resulted in no service being provided (compared with around 25% for older people).
This pressure on services and lack of support means there is often a failure to ensure smooth transitions from children's services to adult social care. This requires close working and understanding between many different groups, including Disabled young people, their teams and partners, including SEND co-ordinators, teachers, and the Child and Adolescent Mental Health Service (CAMHS), all of which feel the pressure of the overburdened and underfunded social care system.
Transitions
Research has continued to find that the experience of transitioning into life as a young adult continues to be characterised by unpredictability and uncertainty for too many Disabled young people.
Studies find that "transitioning young people from children's or adolescents' health services into adults' services is a crucial time in the lives and health of young people and has been reported to be disjointed rather than a process of preparation in which they are involved".
We know that these hard transitions not only fail to meet the needs of young Disabled people and families during a period of major change but that this lack of support can lead to worsening mental and physical health outcomes, alongside a "disengagement with services", which can have serious long term consequences.
It is well known that "young people are at risk of experiencing poorer health outcomes when the transition between children's and adults' services is not coordinated and planned". Research studies have reported that some young people experience a disjointed transfer into adults' services, which is more of a one-off transfer event, which leaves many young Disabled people high and dry, without any support.
The Care Quality Commission found that external local authority budget pressures meant that young Disabled people were often left without equipment, services, respite care, or other requirements during the transition because applicable bodies such as the local authority and local NHS trust failed to agree on responsibility for funding. The CQC found that changes in funding from children's to adult services needed to be clarified and explained.
A lack of support is found in combination with poor quality support: "The 2018 report of the Learning Disabilities Mortality Review Programme found that the poor quality of health and social care services had contributed to the cause of death – or significantly impacted wellbeing – in 8% of mortality reviews of adults with learning disabilities".
Lack of bold plans for the sector
Disabled People’s led organisations witness every day the significant negative impact on young Disabled care users’ physical health and well-being. Our organisations are certain that the current trajectory will lead to an escalation of health and social care needs, and therefore costs, in the medium to long term. Missing out on the support young Disabled people need leads to increased social exclusion, disempowerment and isolation, significantly limiting our ability to live independently. This is particularly acute for those in our community with high support needs who are unable to work and supplement their income. Cutting us off means Disabled people are virtually becoming institutionalised in our own homes.
As colleagues from ROFA have made clear: “Decreasing packages of support restrict access to aspects of life that non-disabled people take for granted such as daily washing, being able to leave the house and having fresh cooked rather than microwave meals. People are now commonly left for hours at a time without access to food or drink and at risk in case of emergency. In person support is replaced with technology such as care alarms wherever possible.”
This situation has come at a clear cost—the lack of a bold new plan to fix it.
“Unpaid carers”
One important factor to consider is the ever-increasing burden placed on the families and loved ones of Disabled young people who don't receive adequate support. This can result in a loss of employment and productivity. Many young Disabled people we work with rely solely on family members or unpaid carers for support. Family members end up reducing working hours and sometimes leaving employment altogether.
Carers UK estimates unpaid carers provide £162 billion worth of care annually. In 2019, Carers UK published a report saying 600 people leave the workforce daily to care for a loved one. The economic loss, which could potentially be billions, as a parent or loved one providing round-the-clock care for a young person could lose years of income. It must be noted that it is estimated that 62% of those providing unpaid support are Disabled.
As our colleagues at ROFA note, "Caring responsibilities can have an adverse impact on the physical and mental health, education and employment potential of those who provide support, which can result in significantly poorer outcomes for health and quality of life. These in turn can impact on their ability to provide support, leading to the disabled person they support having to be admitted to hospital or residential care."
“Youth guarantee”
At a time when the government is keen to highlight the introduction of a new "youth guarantee", it is important to stress the lack of support young Disabled people receive via Education, Health and Care Plans (EHCPs). These are plans which identify educational, health and social needs and set out the additional support to meet those need. Last year, a House of Lords report noted that: "There is also evidence that children from families of a higher socio-economic status, or living in affluent areas, are more likely to be in receipt of an EHCP than those in poorer locations, suggesting that there are greater levels of unmet need in deprived areas."
This lack of support is a significant factor in the disability employment gap remaining at around 30% for the last 10 years. Scope and Social Market Foundation in 2021 estimated that halving the disability employment gap could boost the economy by 50 billion annually.
We agree with the argument made by our colleagues at ROFA that: "Investing in a bold new solution to the issue of disability support will pay off in the longer term by supporting disabled people to contribute to society, through a healthy disability support workforce and through services that are effective, efficient and well-managed."
National Independent Living Service
We need to co-create a new system with Disabled people of all ages, led by Disabled people, and delivered by local Disabled People-led Organisations (DPOs). The DPO Forum England, of which our organisations are part, believes that this new vision should be of a National Independent Living Service (NILS).
This new system would be needs-led. Not only is this what many of the British public assume we have now and believe the welfare state should provide, but a need-led system will provide support when needs first appear, preventing crises and expensive blockages in the system and substantially reducing demand for high-cost acute provision.
It would be free at the point of delivery so the poorest and most acutely disabled are no longer pushed out of support because they cannot afford it. Costs currently spent implementing charging will be saved. The model upholds equality and human rights, enabling Disabled people to live as equal citizens.
It is based on the principles of choice and control, nothing about us without us and the right to independent living. Disabled people lead, shape, and deliver NILS at every level.
NILS will recognise and address other forms of discrimination experienced by Disabled people, including racism, ageism, sexism, homophobia, and transphobia. It would exist alongside the NHS but separate from it as the NHS follows a medical model approach for treating and curing biological pain, distress and illness. A fundamentally different approach underpinned by the social model of disability is required to support Disabled people to live equal lives and participate in society.
This change would also reform where and how social care support is delivered. Delivering it locally would provide the much-needed space for local responsiveness, which is currently dominated by cost-cutting and profiteering. Independent living support services will be commissioned and delivered locally, as for too long, local services such as Deaf and Disabled People’s Organisations have been pushed out of contracts by non-user-led national services able to offer lower unit costs through economies of scale and by private companies willing to reduce costs by compromising on quality.
NILS would mark a crucial shift away from the private sector, locating service provision in the public sector via Public Commons Partnerships and excluding the private sector to stop the diversion of public money into shareholders’ profits. Public money would go directly towards meeting needs through high-quality services provided by a valued workforce. NILS would create a unified, democratic service led by Disabled people and will ensure that Disabled people’s voices and lived experiences shape policy and services.
December 2025