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

The DRTF Working Group recommendation was to establish a National Centre for Independent Living in Wales, run and controlled by disabled people, aimed at covering: awareness of the right to Independent Living, access to Direct Payments, good practice for Independent Living, and supporting local delivery. 

The co-production team developed a Vision based on the working group’s recommendation:

1. Rather than providing support direct to citizens, the Vision imagined an organisation aimed at supporting and working with organisations that have a role to play in enabling Independent Living.
    
2. The co-production team identified core elements of ‘good’ Independent Living: 
    
   1. Advocacy and direct support
   2. Personal assistance and social care
   3. Healthcare
   4. Transport
   5. Participation in the community
   6. Education and skills
   7. Leisure
       
3. The co-production team identified ‘enablers’ of Independent Living. The enablers are types of organisation and activity which, when working well and working together, support good Independent Living:
    
   1. Third sector, Disabled Peoples Organisations (DPOs) and regional Centres for Independent Living (CILs)
   2. Engagement with disabled citizens and co-production
   3. Evidence and data
   4. Campaigning and public awareness
   5. Policy making
   6. Service delivery
   7. Regulation and monitoring
       
4. The co-production team proposed the following activities an NCFIL could do to support Independent Living: 
    
   1. Policy development: advocate for disabled people’s involvement in policy making in Wales to support Independent Living
   2. Produce evidence and data: on Independent Living and disseminate findings to inform policy
   3. Public awareness: campaigning, educational activity to change societal attitudes
   4. Capacity Building and Networks: support local Centres for Independent Living (CILs) and other organisations supporting disabled people.
   5. Best practice leadership: develop guidance and best practice, training and networking opportunities to support organisations
   6. Potential for revenue-generating activities: including consultancy services, training and product development
   7. Evaluation to monitor the Centre’s activities against agreed success criteria
       
5. The co-production team suggested the following foundational principles for designing an NCFIL. The team thought it should:
    
   1. be run and controlled by disabled people
   2. use innovative organizational structure & adaptable leadership
   3. be sustainable
   4. recognise the Social Model of Disability & aligns to the UNCRDP
   5. use co-production and expert panels with disabled people active at all levels
   6. bring together stakeholders to encourage peer support and collaboration
   7. enhance and support local communities and organisations
   8. enable robust monitoring and evaluation
       
6. The co-production team identified the following practical questions to consider for designing an NCFIL:
    
   1. Could it have a physical presence?
   2. Could it operate virtually?
   3. Could it be delivered by a third sector organisation?
   4. Could it be situated within government?
   5. Could it be delivered by or in partnership with an academic institution?
   6. Could it use a partnership, consortium, or network model? 

Breakout Discussion 1 facilitator prompts: What does excellence look like for Independent Living?

1. What was the best example of independent living you can think of or imagine?
2. What made that experience good?
3. Facilitators: please feedback the top 3 characteristics that were common to the experiences shared in your groups

Breakout Discussion 2 facilitator prompts: What could a National Centre for Independent Living in Wales do to support overcoming the implementation gap?

1. Do you think these activities could help to close the implementation gap? What else could be done?
2. Who is already delivering this? (do they need support, how could we build on this?)
3. What are the small things that need to change / quick wins, and what are the longer-term changes? (facilitators report back top 3 of each)

Breakout Discussion 3 facilitator prompts: What is needed for a National Centre for Independent Living in Wales to be successful?

1. How could each of the 3 different models work to keep all stakeholder groups engaged (and connecting the local to the national)? Is there an alternative, better model?
2. Should it have a physical presence or be just virtual?
3. What are the roles for different stakeholders?
4. Are there any potential barriers?

All Wales People First 

Cardiff University

Care Forum Wales

Care Inspectorate Wales

Dewis Centre for Independent Living

Disability Wales

Fair Treatment for the Women of Wales

Flintshire County Council

Guide Dogs Cymru

Pembrokeshire County Council

Practice Solutions (secretariat for the Association of Directors of Social Services (ADSS) Cymru)

Social Care Wales

The FDF Centre for Independent Living 

Torfaen Access Forum - Connect Torfaen

Wales Council of the Blind

Welsh Local Government Association

Wales Local Authority Direct Payments Forum

WTUC Cymru

Welsh Government

Brief

As an outcome from the Working Group on Independent Living: Social Care, the Disability Rights Taskforce has recommended the establishment of a National Centre for Independent Living in Wales, run and controlled by disabled people.

The aim of the workshop is to further discuss this recommendation and to explore the practical considerations for a National Centre for Independent Living in Wales. 

The workshop will be deliberative and will encourage participatory discussions, both as a group and within smaller breakout sessions.

Facilitators from the co-producer group, which includes researchers from Welsh Government and representatives of other organisations, will coordinate the sessions and ensure that all views are captured. 

Agenda

Workshop guidance

Joining instructions

The workshop will take place virtually using Zoom, which you can access via the following link:

• Link to join Zoom meeting 

You do not need to set up or sign into an account to join the meeting as a participant. Further information may be accessed using the following links:

1. Zoom guidance - Getting started for new users
2. Zoom guidance - Joining a Zoom meeting without an account

When joining the meeting please enter a display name. We recommend using only your first name, or the name of your organisation, for data protection purposes.

Accessibility

Arrangements have been made to accommodate all accessibility adjustments currently requested by workshop participants. This will include palantypists to produce real-time transcription of the conversation via a web link shared at the start of the workshop. 

If you have a requirement that we are not yet aware of, or have trouble accessing the workshop, please contact us as soon as possible. using the contact details provided at the end of the document. 

Recording and data collection

Each breakout group will be supported by a facilitator who will take notes of the discussion and feed back to the full group, as required.

We intend to save the transcript of the workshop and breakout groups for operational reasons. We will make this clear to you before the session begins, and you will have the opportunity to tell us if you are not happy for the discussion to be recorded in this way. 

If sessions are recorded in this way, personal data will be removed during the process of transcribing. Recordings will be deleted as soon as this process is completed.

Please see the privacy notice attached to the invitation email for full details of how we handle your data.

In addition to contributing verbally, delegates may participate in writing using the chat function throughout the session. Comments in the chat-bar will be monitored by facilitators and raised on behalf of the participant.

Alternatively, you can share further thoughts after the workshop using the email address provided below.

Contacting us

For any questions or requests, please contact [us] by:

1. [email] or
2. [over the phone]

Deliberative workshop aim

To explore one of the Disability Rights Taskforce (DRTF) recommendations with stakeholders. The DRTF Working Group on Independent Living: Social Care recommended establishing 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 workshop outputs will be used to produce:

• a vision for a national approach to Independent Living in Wales, working with and bringing together existing stakeholders, and
• an understanding of the practical considerations for a National Centre for Independent Living in Wales run and controlled by disabled people to explore key activities, relationships and organisational structures that would best support it in achieving its aims

Background information

The Disability Rights Taskforce (DRTF)

The Welsh Government’s Equality, Race and Disability Evidence Units (ERDEU) are working with co-producers to explore two of the Disability Rights Taskforce (DRTF) Working Groups’ recommendations. 

The DRTF was set up by Welsh Government to respond to the Locked out report, which shone a light on the inequalities that disabled people experience in their day to day lives and were exacerbated during the COVID-19 pandemic. Ten working groups, chaired by disabled people, have now concluded and made their recommendations to Welsh Government Cabinet Secretaries about what is required to achieve improvements for disabled children and adults in Wales.

Research is taking place to further explore two of the most ambitious recommendations. Desk research and lived experience shared in the DRTF Working Group highlights evidence of continued barriers to Independent Living, often underpinned by poor access to social care, as well as limits on access to services that others may take for granted such as housing, employment and transport.

The research group includes co-producers who represent Disabled People’s Organisations and those with lived experience. This way of working ensures disabled people have leading roles in directing the research and the Social Model of Disability is applied throughout. For further information see Disability Wales summary Social Model - Disability Wales, and Welsh Government animation Welsh Government’s Let’s Talk Respect campaign animation: Let’s Raise the Roof – A Social Model of Disability.

Further reading 

Independent Living in Wales 

• Welsh Government Action on disability: the right to independent living framework and action plan | GOV.WALES includes this definition of Independent Living:

What does Welsh Government mean by “Independent Living”? 

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.

• UN Convention on the Rights of Disabled People (UNCRDP) Article 19. Scoping work is ongoing within Welsh Government on how to incorporate the UN convention into Welsh law.

Wellbeing data

• Welsh Government analysis of 2021 Census data includes data on health, housing and education for disabled people in Wales.
• Welsh Government Wellbeing of Wales report, 2023 includes analysis of data on employment and pay, wellbeing, and education for disabled people in Wales.
• Welsh Government-led study Understanding the social care experiences of citizens: final report | GOV.WALES evaluating the early impact of the Social Services and Well-being (Wales) Act 2014
• DRILL (Disability Research on Independent Living and Learning) report See me as a human being looks at independent living choices for disabled people with reference to social care.
• Audit Wales report on and make recommendations regarding Direct Payments in reports including Direct Payments for Adult Social Care | Audit Wales.
• Direct Payments take-up data for Wales can be found on StatsWales Adults with a care and support plan at 31 March, by local authority. Data for England can be found at NHS Digital Measures from the Adult Social Care Outcomes Framework, England, 2022 to 2023 (NHS England Digital).
• Due to differences in the figures reported, take-up rates in Wales are not comparable to other UK nations, as Wales data includes everyone with a care and support plan, rather than just those receiving long-term care and support. 

Social Care 

• Social Care Wales publish research and data including surveys of their registered workforce: Social care workforce survey 2023 | Social Care Wales.
• From April 2024 the National Office for Care and Support became operational and works to the core value statement: “To provide a central guiding hand to the sector through driving improvement in the national delivery of social care in Wales to achieve collaboration, better and more equitable outcomes, access, and service-user experience.” 

Report author: Equality, Race and Disability Evidence Units

Views expressed in this report are those of the researchers and not necessarily those of the Welsh Government.

For further information please contact:
Equality, Race and Disability Evidence Units
Knowledge and Analytical Services
Welsh Government
Cathays Park
Cardiff
CF10 3NQ

Email: EqualityEvidenceUnit@gov.wales

Social research number: 56/2025
Digital ISBN: 978-1-83715-857-7