Research on the potential for establishing a National Centre for Independent Living in Wales - Practical considerations
We worked with the Disability Rights Taskforce to conduct research into options for a National Centre for Independent Living and how it could operate. We wanted to test how we co-produce research to support disabled people.
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Participants were asked to consider practical aspects of design for a successful NCFIL in Wales. This included considering types of model, the roles of stakeholders and organisations, as well as potential barriers.
The co-production team’s Vision suggested that an NCFIL should:
- be run and controlled by disabled people
- use innovative organizational structure & adaptable leadership
- be sustainable
- recognise the Social Model of Disability & align to the UNCRDP
- use co-production and expert panels with disabled people active at all levels
- bring together stakeholders to encourage peer support and collaboration
- enhance and support local communities and organisations
- include robust monitoring and evaluation of its own activities
Figure 3: Foundational principles for a National Centre for Independent Living taken from the co-production team’s Vision
The co-production team identified the following practical considerations for participants to deliberate.
- Could it have a physical presence?
- Could it operate virtually?
- Could it be delivered by a third sector organisation?
- Could it be situated within government?
- Could it be delivered by or in partnership with an academic institution?
- Could it use a partnership, consortium, or network model?
Figure 4: Practical considerations for designing a National Centre for Independent Living taken from the co-production team’s Vision
Findings on overall stakeholder priorities for an NCFIL are presented in the first part of this section. The second part addresses benefits and risks which participants associated with each of the three proposed models in turn: public sector models, third sector models, and university-based models.
Overall practical considerations
Representation at all levels
Participants widely agreed that for an NCFIL to be successful it would need to be led, managed, and staffed by disabled people at all levels. This was consistent with the Vision for an NCFIL proposed by the co-production team. The benefits of this approach are explored in Findings Section 2.Throughout the workshop, participants agreed that lived experience must be integral to decision-making for an NCFIL.
People who make the decisions […] very often don't have lived experience of a disability. So you're really fighting against that system at the moment.” - DPO
Conversations explored how well the different organisational models could support this to make sure that disabled people are effectively represented. Participants tended to agree that this should be a fundamental consideration when choosing a delivery approach.
Ensuring that the centre is not only for the people, but also created with the people it serves” - DPO
Working with existing stakeholder organisations
Participants explored how an NCFIL could be designed to work with existing organisations and stakeholder groups to deliver the activities proposed within the Vision for an NCFIL. For example, it was suggested that the Welsh Government National Office for Care and Support could support by sharing best practice. Engagement with local and grassroots groups could support by linking the local and community perspectives with the national overview, and would be a priority if an NCFIL followed a ‘hub and spoke’ model. Another suggestion was that trade unions could use their understanding of standards and structures to support setting up and managing governance structures. It was noted that trade unions have strong links with organisations that would be involved in delivering services to support Independent Living.
Many group discussions highlighted the need to complement and work alongside organisations already supporting Independent Living. Several participants noted that grassroots organisations, CILs and DPOs including Disability Wales, already deliver services to support Independent Living. They felt that an NCFIL should not duplicate or undermine any of this work.
Whatever [an NCFIL] does, it needs to be supported and strengthened in complementing the role of Disability Wales” - breakout group summary feedback
Many participants said that there is a potential overlap between proposed activities of an NCFIL and work currently done by Disability Wales, including campaigning. One discussion group suggested that Disability Wales or another existing organisation could be contracted to run an NCFIL.
Engaging citizens
Participants felt that disabled people, including citizens must be involved in the design of how an NCFIL would run.
Many participants felt that elements of an NCFIL should be co-produced with disabled people, including the NCFIL’s programme of work. It was suggested that doing this could ensure that its priorities align to disabled people’s experiences and needs. Other suggestions were to include citizens on the board and on experts by experience panels. One participant said that it is important to build relationships with organisations that citizens trust to support engagement between an NCFIL and disabled individuals.
Fair work for all
There was general agreement that an NCFIL needed to have sufficient funding in place so it could deliver its core functions. It was also agreed that it should not be reliant on short term, competitive insecure funding sources or volunteers.
If we identify a gap like this that we're identifying today then I think it is the role of state services to fill that gap. I don't think it should just be filled by volunteers in the third sector.” - Individual participant
Many felt this had implications for choosing funding sources and organisational models.
There are limitations I think to that model […] and you’re into the world of remuneration for co-production approaches from a volunteer basis rather than a dedicated resource [..] that has a real focus and is able to drive things forward”. - Local government organisation
Participants agreed it is vital to recognise the value of disabled people’s time and expertise through paid positions. This included payment of employees as well as fair remuneration for co-production or other involvement. Some participants suggested that a social enterprise model should be considered as a way to support paid employee positions.
If it does employ people, it should be paid employment. That's very important.” - Local government organisation
The important role of appropriate volunteer posts was recognised as enabling wider engagement.
Accessibility and location
Participants felt it was vital that an NCFIL offers flexible and accessible ways to effectively engage with stakeholder groups and communities. This should demonstrate best practice and make sure that engagement is across Wales.
Participants agreed that an NCFIL should operate virtually. This would support effective working with a wide range of stakeholders who have different types of access needs and who are geographically spread out. They also said that it is vital to offer non-digital access to avoid excluding stakeholders who do not engage. Many suggested that local organisations or networks could help. For example, stakeholders could join in or host national meetings from regional offices.
If everything becomes digital, it automatically excludes those who can't or don't want to” - public sector organisation
Several participants identified risks to establishing a centre in a single physical location. These included accessibility barriers, regional bias, environmental impacts of stakeholders travelling, and taking focus away from delivery.
I don't think it should be a physical presence because once you put it in a building everybody thinks that [the NCFIL] belongs to that place and everybody focuses on the building instead of the services” - local government organisation
Risks of regional exclusion were noted. Many participants shared concerns that if a physical centre were established, that it would be placed in Cardiff or Southeast Wales. This would, “run the risk of perpetuating the additional inequities that are placed upon people in other parts of Wales” - DPO.
Varying experience and needs for support for disabled people across Wales were also mentioned.
You have rural areas where the needs are very different for disabled people. […] At least by having it regionally, you're going to see different variations.” - DPO
Discussions explored ways to support pan-Wales engagement and focused mainly on three identified approaches. These included: to work with organisations already operating locally or regionally; to set up local or regional branches of an NCFIL; and to run in-person events across Wales.
You could still be supporting and delivering in-person offers, including supporting those local centres for Independent Living and making sure there are more of them actually across Wales” - DPO
Some participants felt that regional engagement could be effectively delivered through a network of organisations. They suggested that this might include whether CILS, DPOs, universities or Regional Partnership Boards. One group discussed the idea of an NCFIL using local government offices or third sector workspaces across Wales. When considering links between grassroots organisations and the national picture, it was also noted that “a community doesn’t have to be geographical” - DPO. It was noted that support groups do often engage stakeholders and citizens across Wales.
It was also suggested that the aims of an NCFIL and the work it would undertake should steer consideration of physical locations and ways of working.
We need to decide what the role and function is of [an NCFIL] before we can decide on what the balance is between physical and virtual. You need to know if a physical space is going to be required, for example, to be able to deliver certain services” - breakout group summary feedback
Strategy and evaluation
Discussions on how an NCFIL could set its aims and objectives yielded several ideas. The main considerations included: how to include a national perspective, ways for citizens to influence, and how to align with stakeholder organisations.
As explored in Section 2, linking citizens and their needs with national organisations and decision makers was identified as important by many. Some participants proposed hub and spoke models, or linking to existing local and regional networks. Building on this, participants explored ways that information could be gathered locally, collated and be used to inform priority and strategy setting at a national level. Examples were shared at the workshop of umbrella organisations engaging with local partners or branches to understand issues on the ground.
The value of including the voices of people with lived experience in setting national strategy was summarised by one participant, in relation to a suggestion of citizen representation on an NCFIL board:
Facilitating and amplifying difficult conversations becomes more impactful when citizens lead these dialogues, bringing authenticity and urgency to policy discussions” - DPO
As explored in section Leading best practice through employment and engagement, it was suggested that an NCFIL could offer to train citizens, which could result in representation within strategic decisions from a more diverse range of voices.
One group explored how an NCFIL could contribute to an evaluation framework which aimed to understand the needs for support for disabled people among the population. This could be co-produced with disabled people so “we get disabled people to identify the services they need” - DPO.
Another group suggested that strategy and evaluation for an NCFIL should be aligned to the Wellbeing of Future Generations (Wales) Act. The Act has a cross-cutting remit, which could enable an NCFIL ‘to focus on the Government’s wellbeing outcomes already’ - DPO. Others considered intersectionality and suggested that an NCFIL’s strategy should consider and integrate with other equalities action plans. For example, the LGBTQ+ Action Plan for Wales and the Anti-racist Wales Action Plan.
It was widely agreed that a NCFIL’s activity should be monitored and evaluated to ensure activities are held to an agreed standard.
We need more teeth. Because obviously at the moment we have the Equality Act and that's not being […] adhered to so [an NCFIL], what would be the aim and would it have the impact that it should have” – DPO
Many felt it would be important to assess the impact of an NCFIL’s activities on people’s experiences rather than just monitoring outputs. One group explored how evidence gathered could include: ‘real life outcomes rather than just key performance indicators’ - DPO.
It was suggested that it could include interviews with stakeholders and case studies, to understand how successful an NCFIL has been in improving outcomes for disabled people.
Funding
Participants agreed that sustainable funding should be considered carefully if establishing an NCFIL, but there was no consensus on how this could be best achieved. Due to the risks around reliance on short term grants by third sector organisations, some felt that a commitment to guaranteed funding would be needed to enable delivery of the core activities.
If [...] an NCIL is seen as having […] strategic significance for Wales, for Welsh Government, then its core operation does need to be funded” - DPO
Many also linked having core funding to the ability to employ paid staff, rather than relying on volunteers.
My worry always is that when we talk about something being run by and for disabled people that there’s an expectation that because it’s disabled people doing it for themselves […] they’ll do it all for free. […]. It’s got to be properly and sustainably resourced with disabled people properly valued and enabled to play whatever role they’re able to play within the governance and running of whatever this centre might be.” - DPO
Others thought relying on external funding posed a risk and felt that an NCFIL should aim to generate revenue to achieve sustainability and resilience. Some suggested a social enterprise or social finance model should be considered. Others were concerned that if an NCFIL were reliant on government funding, it would not be able to make effective challenges.
There is always a fear that you might lose your funding if you are too challenging.” Individual participant
Governance
Participants were asked to explore how an NCFIL might be positioned and governed to best support delivering the activities proposed in the co-production team’s Vision.
Many participants strongly highlighted a need for an NCFIL to operate with a level of separation from government. Participants proposed that this would allow an NCFIL to control its organisational strategy. They also thought it would mean that when the NCFIL needs to challenge stakeholders who support Independent Living policy or delivery, challenges would be more effective and impartial.
There is something about it needing to be independent in itself otherwise it will end up becoming or risk […] the policymakers thinking, ‘oh, that's ours to do something with’” – Local government organisation
One group suggested a social partnership structure which could involve government and private sector stakeholders in decision making.
Organisational model options
Breakout groups explored strengths and weaknesses of the three models proposed in the co-production team’s Vision. They considered how partnerships or joint models might bring together the best elements from each. All groups discussed a model where an NCFIL is delivered by more than a single organisation. This could be either in a partnership, or as a central hub working with local and regional organisations. However, many felt that responsibility for delivery should sit with a single lead organisation. Benefits of a joint approach were identified, and included bringing together different perspectives and enable regional engagement.
Many participants felt that at least some of the activities of an NCFIL could be delivered by organisations already in Wales, with some mentioning Disability Wales.
One group thought there could be a Disability Commissioner or Commission made up of disabled people. This could be coordinated by an academic institution.
Public sector model
Participants discussed situating an NCFIL within government. They noted the benefits could include access to resources including ringfenced centralised funding. They also raised concerns that this might limit its effectiveness and ability of the NCFIL to challenge.
If you were to say […] its infrastructure is supported from within the Welsh Government inevitably then, you'll have questions about, well, how independent is the centre? How able is it to make challenges?” DPO
Some suggested that an arms-length body, independent from government but with a clear mandate could mitigate this risk. Social Care Wales and Llais were given as examples of statutory organisation models to consider. One group agreed that “we would need it to have its own freedoms”.
Many explored the possibility of an NCFIL being delivered by local authorities. Whilst it was agreed that whilst there is evidence that having an access officer post in Pembrokeshire works well, several risks were highlighted with taking a local approach to Independent Living. Some perceived there to be a gap in the accountability and impact evaluation of local authority services that are provided to disabled people. Some felt that to deliver its aims, an NCFIL would need to have a national overview.
I think for it to have the most impact it should be based on a national level. I don't see how being linked to local authorities or local government is really going to work. I think there might be even more bias in doing that.” - Public sector organisation
Others suggested that funding for Independent Living could be managed through a centralised budget which could fund activities like research as well as support for individuals. It was suggested that this could avoid further complicating local authority social care budgets.
There was support for the suggestion of establishing access and advocacy officers more widely in Local Authorities across Wales. Some participants noted that this would avoid overlap with work already being done, particularly by the third sector.
One group discussed ways that either the NHS Local Health Board or Regional Partnership Board (RPB) structures could be used. It was felt that a hub and spoke model could effectively support an NCFIL aims and activities and enable pan-Wales engagement. It was suggested that it would need to make use of existing mechanisms to influence and share best practice, alongside links between local and national organisations. It was thought that RPBs could work in partnership with other organisations including the third sector and universities. They were deemed to be well-placed to conduct evaluation to feed into policy development and have an understanding of their population’s needs. Some felt that to effectively support Independent Living, RPBs would need to strengthen lived experience representation. It was suggested that this could potentially be through establishing engagement groups under each board to identify and evaluate needs.
I think you need more inclusion of lived experience on the Regional Partnership Boards because it's very limited” - DPO
Third sector model
Participants discussed the value of third sector work already happening to support Independent Living. They largely felt there were many benefits of a third sector model for an NCFIL, including the ability to closely link to stakeholders and citizens.
If it's a third sector organization, the advantage is it's more likely to be more rooted in the community” - DPO
It was noted that existing third sector organisations are geographically spread and a network of DPOs could engage with local communities across Wales. They thought this would offer a good understanding of regional differences in the services and support for disabled people need. Another point raised was that DPOs often aim to employ a significant proportion of disabled staff. So any model involving DPOs would support an NCFIL’s principle of being led and run by disabled people.
However, some risks around resource and capacity to deliver the work were identified. For example, reliance on volunteers, and insecure funding. Most felt that a sustainable approach to an NCFIL in the third sector would need to involve additional partners. For example, a partnership with WCVA, or others with regional offices could be explored. Another suggestion was for a university ‘hub’ leading a network of local third sector organisations.
One group explored a model that would include a local centre for Independent Living in each local authority or RPB area. This could support grassroots organisations, reduce geographical barriers and “bring the hubs more into the community” – DPO. It was suggested that this could be coordinated by a virtual hub at the centre and that this model would support environmental sustainability by reducing the need to travel.
University model
Participants identified two strengths in a model for an NCFIL based in an academic institution. Firstly, it could be independent from government so would allow freedom to set a research strategy. However, it was acknowledged that grants which have restrictions or expectations attached, and individual academics’ own areas of interest could both also influence strategy. The group also felt this model would allow better access to funding and other resources to deliver the work, particularly than a third sector model, though one group explored the idea that a university could lead an NCFIL bringing together DPOs and other stakeholders.
A disadvantage that many identified with this model was that it would have weaker links with communities, delivery partners and other stakeholders.
The risk of it being solely focused in universities, it could be seen as remote, a bit ‘ivory tower’, so the governance structure would need to be important.” - DPO
Many participants thought that running an NCFIL from a group of universities across Wales could support wider geographic engagement, but concerns were shared about whether this would be successful.
There’s just a risk that as soon as you make clear that it’s being supported in a particular geographical space or a specific university, unless, again, you’re really clear about the mission and the offer and the national approach, immediately people will feel excluded, even though that’s not deliberate.” - DPO