Research on the potential for establishing a National Centre for Independent Living in Wales - Background

In July 2021, the Locked out: liberating disabled people’s lives and rights in Wales beyond COVID-19 report highlighted the inequalities experienced by disabled people in society. One of the Welsh Government’s responses to the report was to set up the Disability Rights Taskforce (DTRF), a partnership between Welsh Government and disabled people. The DRTF operated on the principle of co-production, with more than 200 Welsh Government policy officials and 350 external stakeholders working together to develop recommendations, aimed at improving outcomes for all disabled people in Wales. These recommendations have been used to inform the outcomes and actions of the Disabled People’s Rights Plan. 

In September 2023, the DRTF agreed to collaborate with the Welsh Government’s Equality, Race and Disability Evidence Units (ERDEU) with the aim of co-producing Government Social Research informed by lived experience. It would test the extent to which GSR can be co-produced, working together to navigate barriers and embrace enablers for change.

The research aimed to test an alternative way of conducting research alongside representatives of disabled people and in line with the social model of disability. A ‘co-producer’ is identified as a member of the cross-sector team who worked together to prototype co-production of a GSR report.

The research aimed to enable delivery of the ERDEU’s mission, “to improve the availability, quality, granularity and accessibility of evidence about individuals with protected and associated characteristics so that we fully understand the level and types of inequalities in Wales.” 

The ambition, as part of contributing to A More Equal Wales, was to enable decision makers to develop better informed policies and drive better outcomes for people.

The research was intended to strengthen the legacy of the DRTF through further exploring the recommendations. Two recommendations were selected by DRTF Chairs for researching. This report focuses on the following recommendation from the Independent Living: Social Care Working Group.

‘Establish a National Centre for Independent Living, run and controlled by disabled people, aimed at: 

• strengthening knowledge and understanding about the right to Independent Living
• increasing knowledge and skills regarding good practice in supporting and achieving Independent Living
• devising strategies to broadening access and take-up of Direct Payments including developing the market for Personal Assistants
• maximising the role of local Centres for Independent Living through provision of support and access to resources.’

The Disability Rights Taskforce (DRTF) Independent Living: Social Care Working Group met 4 times between September 2022 and March 2023. Working Group membership included disabled people with lived experience of using social care services, representation from Disabled People’s Organisations, third sector organisations, public sector bodies, academics, and Welsh Government officials from a range of policy and delivery areas. 

The meetings explored issues faced by disabled people relating to social care and Independent Living. Members discussed a wide range of barriers that disabled people experience around social care including a lack of understanding from health and social care professionals about their needs; disabled citizens’ lacking understanding of their rights regarding access to support; barriers to accessing Direct Payments; problematic attitudes within society; and lack of specialist skills among social care workers. Discussions covered ways to address these barriers, as well as contextual issues such as the Cost-of-Living crisis, the slow recovery in social care provision following the coronavirus (COVID-19) pandemic, and issues with healthcare services. 

The Working Group discussed the importance of taking a human rights approach towards support for disabled people, and looked at the implications of the UK ratification of the UN Convention on the Rights of Disabled People (UNCRDP), in particular Article 19 on the Right to Independent Living. Discussions also raised concerns over a lack of accountability regarding the implementation of statutory duties. It was suggested that guidance was needed on implementing the Social Services and Well-being (Wales) Act requirement to give due regard to the UNCRDP when providing services under the Act. 

Working Group members proposed that establishing a National Centre for Independent Living (NCFIL) in Wales, run and controlled by disabled people could help to embed Independent Living through conducting research and having oversight of regional services. They also recommended that Welsh Government actively recommit to the concept of Independent Living, and promote it across policy areas and service delivery. Members felt this should be used as the gold standard by which to judge what is being achieved. Members also suggested some amendments to the definition of Independent Living which Welsh Government used in the 2019 Action Plan. 

I want to thank all members of the Working Group whose contributions and ideas inspired this research.

Rhian Davies, Chief Executive of Disability Wales

The right to Independent Living in Wales

In 2019, the Welsh Government published its framework: Action on Disability: The Right to Independent Living, which set out actions to address the main issues faced by disabled people across a range of policy areas. It highlighted inequalities for disabled people in a number of areas related to Independent Living, including higher levels of poverty and greater social exclusion.

Independent Living is defined within the Framework as:

‘Independent living means all disabled people having the same freedom, dignity, choice and control as other citizens at home, work, in education and in the community. It does not mean having to live by yourself or do everything for yourself. It means rights to practical assistance and support to participate fully in society on the same basis as others as well as to voice choice and control over how this is provided. 

It is about ensuring people of all ages and from all communities are able to maintain independent living, enjoy well-being and access appropriate support when and how they need it.’ 

The Framework intended to help disabled people to fulfil their ambitions and improve their well-being through fair employment, better health outcomes, opportunities for life-long learning, and more joined-up communities. It aimed to remove the barriers to getting a job and to create the right environment for businesses to grow and thrive.

In doing so, it has influenced a number of policies and strategic plans across several Welsh Government policy areas, including: Hate Hurts Wales, the Digital strategy for Wales, the Innovative housing programme and Stronger, fairer, greener Wales: a plan for employability and skills.

More recently, development has started on a cross-government action plan for disabled people. This will set out Welsh Government’s vision for a Wales where disabled people can expect to be included and respected. The plan will demonstrate an ongoing commitment to the protection of disabled people’s rights and to embedding the Social Model of Disability throughout policy in Wales.

The Welsh Government also has responsibilities under the UN Convention on the Rights of Disabled People (UNCRDP). The convention, which was adopted by the UN General Assembly in 2006 and ratified by the UK in 2009, acts as an agreement between governments to protect the rights of disabled people. This includes rights that relate to Independent Living under Article 19, ‘Living independently and being included in the community’, which says:

• disabled people have an equal right to live in and take part in the community
• disabled people have the right to the same choice and control as non-disabled people
• governments should do everything they can to ensure disabled people enjoy these rights

Welsh Government has commissioned the independent Legislative Options Working Group to scope how this convention could be incorporated into Welsh law.

Scope of Independent Living

The right to Independent Living in Wales touches many policy areas and inequalities can be seen in official statistics. 2021 census data show that 21% of people in Wales (670,000 people), were disabled, defined as those who have a physical or mental health condition or illness lasting or expected to last 12 months or more, aligning with the Equality Act (2010), Wales. 

National Survey for Wales data (2022 to 2023) shows that disabled adults[1] or those with a limiting long-standing illness are much more likely to say they feel lonely most or all of the time and more likely to have lower life satisfaction. Disabled people or those with a limiting long-standing illness were more than twice as likely to live in a household in material deprivation than those who are not disabled. 

In 2002 the Welsh Government adopted the social model of disability. Rather than defining people as disabled by their impairment (i.e. the medical model of disability), people with impairments or long-term health conditions are considered to be disabled by physical, attitudinal and organisational barriers created by society. Many of the data sources in this section use medical model definitions of disability in line with the Equality Act 2010 definition. In the Equality Act a “disability” means a physical or a mental condition which has a substantial and long-term impact on your ability to do normal day to day activities. However, we have used social model language in this section where possible.

Despite some improvement in recent years, evidence from the Wellbeing of Wales report 2024 suggests that disabled people continue to experience worse outcomes than non-disabled people across a number of areas related to Independent Living. These include employment rates, income, and well-being.

Economic activity data published by Welsh Government shows the disability employment gap to be 30.6 percentage points. 50.9% of disabled people aged 16 to 64 were in employment in the year ending September 2024 compared to 81.5% of people who are not disabled. According to 2023 data, for those in employment, disabled people in Wales earned, on average, £1.75 (12.2%) less per hour than non-disabled people. 

About 48,500 adults in Wales had a care and support plan according to 2023-24 Social Services activity data of which, 13% had a care and support plan supported using a Direct Payment. About 200,000 people work in Care and Health Services in Wales. Those services have been identified as one of the eight parts of the Foundational Economy, which also includes Food, Housing, Transport and other essential everyday goods and services.

The role of Social Services 

Local authorities provide many of the personal care services used by disabled people in Wales. The Welsh Government’s framework on Independent Living recognised personal care and support as one of a range of elements that are needed to remove or reduce social barriers. 

Social services is devolved in Wales and the Social Services and Well-being (Wales) Act 2014 sets out in law how social care should be delivered. The principles underpinning the Act can be summarised as follows.

• Voice and control. Putting the individual and their needs, at the centre of their care, and giving them a voice in, and control over reaching the outcomes that help them achieve well-being.
• Prevention and early intervention. Increasing preventative services within the community to minimise the escalation of critical need.
• Well-being. Supporting people to achieve their own well-being and measuring the success of care and support.
• Co-production. Encouraging individuals to become more involved in the design and delivery of services.

The Code of Practice on part 2 of the Act sets out how general functions under the Act are to be carried out. In particular, it places a duty on local authorities to have due regard to the United Nations Convention on the Rights of Disabled People in relation to disabled people who need care and support and to disabled carers when carrying out these functions. 

As part of the Social Services and Well-being (Wales) Act, Regional Partnership Boards (RPBs) were established. These aim to improve the well-being of the population and improve how health and care services are delivered. Each RPB must demonstrate citizen engagement and co-production. They can include members of the public and carers as well as representatives from Health, Social Care and Local Government.

Welsh Government’s National Office for Care and Support was established in 2024 to guide the social care sector to make improvements to social care in Wales. It is aiming for collaboration across the social care sector. Also, to improve access to services, to improve the experience of using services and to achieve better and more equitable outcomes. One of its core functions during its first year has been the development, implementation and ongoing delivery of the National Care and Support Service for Wales. The National Office will continue to work closely with local authorities, service users and the workforce. It will continue to support and enable delivery of national priorities as the 10-year phased implementation plan progresses for a National Care and Support Service, in addition to other core functions.

Further work is underway to support disabled people and those with long term health conditions to have more control over how, when and by whom their healthcare is delivered. The Health and Social Care (Wales) Act 2025 which enables the introduction of direct payments for adults receiving Continuing NHS Healthcare (CHC) became law in Wales in March 2025. It aims to provide parity with social care, where direct payments administered by Local Authorities are a valued option for disabled people as evidenced by Audit Wales data. 

The role of the third sector 

The Welsh Government has acknowledged the important role of third sector organisations in contributing to Independent Living. This includes working co-productively with disabled people and DPOs to identify problems affecting disabled people and to find solutions. They also provide services to citizens such as advocacy and other support. 

The Welsh Government’s Third Sector Scheme was published in 2014. It sets out how Welsh Government works with, supports and funds voluntary organisations. This Scheme includes a Code of Practice for Funding the Third Sector which sets out the principles for Welsh Government funding and commissioning. The Third Sector Partnership Council’s (TSPC) Funding and Compliance sub-committee members and Welsh Government officials have engaged third sector organisations and public sector funders to co-produce a revised code.

The five principles of the refreshed and simplified code are: Equity of Access; Early and continuous dialogue; Valuing and Outcomes; Appropriate Funding Mechanism; Flexibility. Following its publication in April, Welsh Government officials are working with the third sector to promote its adoption.

In addition, Welsh Government is working with the Third Sector Partnership Council’s Volunteering Cross-Sector Leadership Group to co-design new ways to support and increase volunteering in Wales. This New Approach to Volunteering will be launched at Gofod3.

Centres for Independent Living in the UK

As in Wales, local centres for independent living operate in England, Scotland and Northern Ireland offering variously advocacy, payroll support, and PA recruitment. Some also undertake campaigning and training activities.

As well as local centres, until 2011 there was a National Centre for Independent Living in England. It was formed from the British Council of Organisations of Disabled People and was controlled by disabled people. It campaigned for rights on Independent Living, including on the use of Direct Payments for social care. In 2012 it merged with RADAR and Disability Alliance to form Disability Rights UK, which is a Disabled Person’s Organisation (DPO). It aims to influence policy impacting disabled people nationally and regionally.