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

The overall aim of the research was to prototype co-production and explore one of the DRTF Working Groups recommendations, to:

‘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 co-production team developed a Vision for an NCFIL based on the DRTF recommendation. This set out how an NCFIL could help support Independent Living.

The research then used a deliberative workshop discussion to explore the co-production team’s Vision. Different stakeholders took part, including people with lived experience of being disabled.

The workshop looked at the following research topics.

• What does Independent Living mean in practice?
• What activities could an NCFIL do to improve Independent Living for disabled people in Wales?
• What would the practical considerations be for designing an NCFIL?

This research used a qualitative method. The number of participants were limited but all had relevant experience and/or policy expertise. It does not claim to be a complete exploration of what is needed to support disabled people’s right to Independent Living. Extensive efforts were made to identify and engage the main stakeholder groups. Independent Living supports many parts of day-to-day life, and many different policy areas and stakeholders are involved. This means that some perspectives might have been missed.

This research aimed to prototype co-production of Government Social Research (GSR). The co-producers worked together in all parts of the research. From project scoping, planning and data collection to analysis, identifying themes, and developing the narrative structure and content of this report. Welsh Government social researchers wrote and quality assured the reports which were sent to all co-producers for sense-checking. A separate evaluation will explore the extent that the co-production aims were achieved.

The co-production team included DRTF Working Group Chairs, Welsh Government social researchers, and Welsh Government policy officials involved in the DRTF.

A significant theme observed throughout the discussions was the ‘golden thread’ of incorporating lived experience at every level of an NCFIL.

It was felt that strengthening representation of disabled people in the decisions which affect them and in leadership positions around Independent Living could improve policymaking and help to increase public understanding. There was a widespread feeling of frustration from stakeholders who have engaged previously with policymakers and service designers, about not knowing if their input is having an impact. Disabled People’s Organisations (DPOs) help to facilitate engagement between citizens and policymakers, service providers and government organisations. However, they report having a difficult environment to work in and limited funding for core running costs. It was suggested that this makes it harder to do their job. It was raised that centres for Independent Living (CILs) can generally provide services such as advocacy and payroll support. However, citizen engagement, campaigning, and other non-service provision was deemed as hard to support without core funding.

Participants felt that agreeing a definition of ‘Independent Living’ and sharing this with stakeholders was an important first step. Based on the findings, Independent Living must include more than just social care, although this is an important part. It should not mean doing everything for yourself or living alone. It should be based on the right to live a fulfilling life on an equal basis with others.

Many participants saw a gap between what needed to be available to support Independent Living and what happens in practice. Some mentioned personal experience of organisations not complying with the Equality Act 2010. Others highlighted a lack of guidance to support organisations to follow the UNCRDP recommendations. These are included in the Social Services and Well-being (Wales) Act 2014 (UK legislation) (SSWBA).

Participants discussed what would make Independent Living successful. The most common theme was having person-centred support and being able to choose from a range of support options. The findings indicate that good quality personal care improves other areas of life, such as work and personal relationships. Many participants shared examples of where personal care options were inadequate. These included: options were restricted, not offered, on offer but not communicated, or not appropriate. An example of restricted choice was the perceived ‘gatekeeping’ preventing access to Direct Payments for personal care. This goes against the SSWBA principle of ‘Voice and Control’ of ‘putting the individual and their needs, at the centre of their care’.

Findings from the workshop also indicate that support is seen as ‘fragmented’. Ineffective collaboration between services, including healthcare services and variations in approach between local authorities has led to inequality of access to services.

Participants generally agreed that activities in the proposed Vision for an NCFIL aligned with their expectations.

Findings from breakout group discussions show that an important characteristic of an NCFIL would be that it is led by disabled people, with disabled people would be represented at all levels within the organisation. The benefits of this are to:

• demonstrate best practice in accessible working
• address public misconceptions about barriers to providing workplace adjustments
• put disabled people in influential leadership positions
• offer employment opportunities for disabled people
• support professional development

 Also identified was needing to extend the representation of lived experience on panels and other types of engagement with disabled people such as through volunteering roles. This could avoid high burdens and work for a few individuals. Fair remuneration (payment) for this engagement should be given. Also, training should be available to encourage citizens to act as representatives. Coaching could aim to improve confidence, public speaking skills, and provide citizens with the tools to feel able to represent themselves with a variety of audiences This should result in a greater a diversity of voices involved in national conversations.

Findings suggest needing a ‘strong voice’ to take a national overview of Independent Living. It was felt this would lead to cross-cutting change and address fragmentation within structures in society and practical services. Communications work to define and promote Independent Living could support public awareness and set out best practice for delivery. Network building and best practice leadership could focus on regional variations, infrastructure, and collaboration issues. An NCFIL could produce evidence and data that could support monitoring of Independent Living in Wales, the impact of policies and identification of barriers. It could also provide services that provide training and coaching for individuals and DPOs, as well as potentially establishing a Disability Studies Centre.

Supporting existing stakeholders was identified as an important activity. This could mean supporting and possibly bringing together stakeholders who already deliver services, to complement and align with what is working well. Stakeholders include CILs, DPOs and Disability Wales, and Local Authority officials working to support accessibility. Providing a link from local and grass roots groups to national decision making is important. It could be a way to support a strong, unified voice on policy. DPOs were seen to play a vital role in delivering services directly to citizens and being positioned to understand issues on-the-ground. Participants felt that support should be provided to improve resilience of DPOs. This could include training, professional services support, and peer networks. Best practice sharing would be particularly valuable to smaller organisations. It could include guidance on working with volunteers, accessible working, and communicating what Independent Living means in practice. Participants suggested that best practice could be shared by established regional networks such as Regional Partnership Boards and the newly established National Office for Care and Support.

Revenue-generating activities could address gaps in the market.  These could include training for organisations and individuals, such as accessibility audits. There were broader discussions in the workshop around social enterprise organisational models. These are explored in the last section of this chapter.

Designing an NCFIL to represent lived experience, accessibility for everyone, and complementing existing stakeholder activity were strongly supported. Approaches to other aspects such as funding sustainability, strategy setting, and a delivery model were discussed, and a range of views on how to best do this were shared.

Findings suggest that lived experience must be at the heart of decision-making. This is at all levels of an NCFIL organisation, including leadership and by involving citizens’ voices using co-production. This should be supported by:

• creating accessible working environments
• ensuring fair payment for employees
• ensuring fair compensation for volunteers
• having enough paid roles
• positioning a Centre where it can promote effective wider engagement, particularly with grass roots organisations

As said in Findings Section 2, an NCFIL should be able to give a unified voice on cross-cutting issues that impact Independent Living nationally. Many felt that having an NCFIL in the third sector or delivered through a network of DPOs would support the aim of having disabled people in leadership and at all levels.

Working with and complementing stakeholder organisations that already support Independent Living was seen as vital. This would make sure a NCFIL does not crowd out or duplicate good work already being done, particularly by Disability Wales and local CILs. An existing organisation could be contracted to set up an NCFIL. Others suggested that creating local authority access and advocacy posts could support some of the identified activities.

Access for stakeholders is another main consideration. This is both for the delivery of an NCFIL’s activities and geographically. Stakeholders should be able to engage in a way which is accessible to them. Participants said having digital and face to face ways to engage would support accessibility for a wide range of organisations and citizens. 

There could be risks around having an NCFIL in a single or main physical place. Some felt having it in Southeast Wales could make regional inequalities worse and alienate stakeholders in other regions. A few had concerns that the building would become the focus instead of the activities of an NCFIL. Maintaining an in-person presence across Wales would be essential. Regional variations in access and support needs must be considered. Ideas to support this included building networks of local third sector organisations, working with Regional Partnership Boards, and linking the work to multiple universities across the country.

Participants did not agree on a preferred funding approach. Important considerations included sustainability and fair work for employees and volunteers. Relying on volunteers and the third sector to deliver this work was described as unacceptable. Funding for core activities was supported by many participants. Others felt that developing independent income by revenue-generating activities, or a social enterprise model would be more sustainable for an NCFIL. Participants said that having it in an academic institution would give it greater access to funding and resources for delivering the proposed activities.

Where an NCFIL is positioned would be vital to its success. Participants felt that an NCFIL would need to have control over its own strategic direction. It would be able to have an impartial view of the activities of other stakeholder organisations working towards Independent Living. It was felt this would be difficult to achieve if it was situated within government. There was support for a potential arms-length body with a clear mandate. The strategic direction could come from working with grassroots organisations to understand what they feel should be prioritised. An NCFIL could consider these priorities in the context of the national agenda.