Changing social care: an inclusive approach

Case study: Disability Wales

The organisation

Disability Wales is an independent, not-for-profit organisation that started in 1972. It is a membership organisation of disability groups and allies from across Wales. These groups champion the rights and equality of all disabled people regardless of physical or sensory impairment, learning difficulty or mental health condition. The aim is to empower disabled people and develop opportunities for them to participate as equal citizens. Disability Wales supports member groups via regional disability and access group network development, creating opportunities for information sharing, training and support. Disability Wales also offers a members information service and develops policy in consultation with members on a range of disability-related subjects.

A voluntary board of directors manages Disability Wales. They are elected and drawn from disabled people across Wales who are active in local and national disability organisations. Any person nominated and elected to the board of directors must be a disabled person.

Disability Wales is funded from the Welsh Assembly Government because of its role as a national umbrella body and because part of its role is to be a consultative body with the Assembly regarding policy work. Disability Wales also runs projects funded from various sources and in partnership with other organisations that help to deliver its aims and objectives.

The improvement

Disability Wales was originally set up by people based in health and social care, in line with a medical model of disability, whereby impairments are seen as physical conditions intrinsic to the individual. In 2003 there was a vote to adopt the social model of disability, an ethos recognising that disability is a social and political issue about barrier removal, not about specific conditions or impairments. The decision was taken that the Disability Wales board should subsequently consist of 100 per cent disabled people. In addition, to qualify for full membership, organisations must now comprise a majority of disabled people – the decision was taken that a majority should be 51 per cent. The 51 per cent requirement was phased in over time. The changes meant that Disability Wales moved from being an organisation for disabled people to an organisation of disabled people as well as evolving to reach out to more people than it was previously able to. The following sections organise the information we collected according to our three themes: (1) leadership and purpose; (2) employee involvement; and (3) stakeholder involvement. Each theme is then divided into several sub-themes. Refer to the knowledge review and analytical report, 'Improving social and health care services', for a full review of the themes.

1 Leadership and purpose

Disability Wales’s embodiment of the social model of disability coincided with the entry of a new leader who organised her thinking and practice around this progressive model. In many ways, the change in purpose and leadership were very much intertwined.

Leaders need to establish a clear sense of purpose and ideology to enable change and improvement

All staff interviewed acknowledged that the arrival of the new director had been the turning point for change and that the leader had enabled the change. That is, beyond driving the new purpose or ideology for the organisation, leaders also created conditions that allowed it to shift in the desired direction. The staff were very clear about the incredible impact that the leaders had in enabling the changes to happen. Disability Wales adopted and embedded the social model of disability to become an organisation for disabled people. The aim was to achieve rights, equality and choice for disabled people and adopting the social model of disability allowed Disability Wales to express the values it aspired to – of empowering disabled people to become equal citizens. A representative of one of the member organisations stated:

If you have a non-disabled person standing at the front of a lecture hall trying to offer disability equality training, however well they do it, however good the outcomes apparently are, it maintains the myth that this isn’t something disabled people can do themselves.

Leaders create the conditions to enable change and improvement

In Disability Wales many staff had wanted to move in a new direction, but had not been able to prior to the arrival of the new director. One staff member stated:

…I think the establishment of the Disability Rights Commission confirmed our need to change...With the next director coming on board she was there to promote it and to make it a little smoother. The executive committee in the past have been very anti-learning about new things like the social model because they didn’t understand what it was. We had to undertake a learning I think some of them understand and they are adopting it a little easier.

The director of Disability Wales remarked that the organisation’s movement to the social model ‘started the zeitgeist’ among many other Welsh disability organisations.

One of the ways the director enabled change was by simply being accessible. At Disability Wales one of the staff members claimed:

To me CEOs are sometimes a bit distant, but she has approachability. You can contact her about something you think is crucial. She seems to be on the ground still as well. She knows everything that is going on around the country, [but] she is not so high up on her perch. She is at grass-roots level and approachable.

This statement conveys the pride the staff member has in her director and showcases the balanced blend of leadership necessary for this organisation.

Respond to issues, but do not compromise on direction

The director of Disability Wales knew that one of her primary roles was to respond to issues raised by her staff, people who use services and members of Disability Wales, but that in doing so she must not compromise on the direction of travel. In some cases organisations and members were very much against the changes, particularly where they would no longer be allowed membership. The director encouraged staff to spend time with people to help explain and discuss the decisions but made it clear that Disability Wales would not be compromising on its decisions.

Communicate underlying purpose and ensure actions are consistent with this purpose

Communication by the director of the underlying purpose and ideology across to others was a key feature in Disability Wales. The director used consultations to initiate a two-way communication process between staff and members. The methods the director used to establish or communicate the underlying messages included:

In Disability Wales, the criteria for membership had to change to ensure that it was in line with the purpose of the organisation. Currently, only organisations whose boards are comprised of a majority of disabled persons are allowed membership. This decision was taken to ensure that the underlying purpose of the organisation ran throughout its activities. The organisation encountered some participants who believed this tactic was reverse discrimination. The organisation has had to learn to tailor its message to these groups and, as the director says, reiterate to them that, ‘It’s not about discrimination, but ownership. If the group is about disability, then it should be led by disabled people. Non-disabled people should be in supportive roles or as allies rather than leaders.’

Directors and staff acknowledged that education and information-sharing may be necessary to show people a new way of looking at things. Disability Wales explained that its executive members were often frightened to say the wrong thing for fear that it would go against the latest politically correct terminology: ‘One day you can say people with learning difficulties, the next week something different,’  as a Disability Wales staff member pointed out. Thus, educational initiatives were sometimes necessary to communicate the purpose. However, Disability Wales recognised that it was not possible for everyone to come on board with the social model of disability.

Although the underlying purpose of the organisations gave a clear driving force for improvements, it did not mean all decisions were clear-cut. Staff at Disability Wales explained that their underlying purpose did not necessarily provide a solution in terms of how to meet their perceived need to develop the organisation without doing so at the expense of existing organisations. For example, Disability Wales wants to be a major lobbying organisation, but the social model of disability does not provide it with an answer as to whether it should expand in a particular area of the country, which might subsequently negate the need for other organisations to exist there.

Stakeholders need to be on board with the underlying purpose

The director argued that all the stakeholders, the board, employees and users, must be on board and engaged with the underlying purpose of the organisation. In Disability Wales there was a core set of staff members who already had the desire to make improvements and move the organisation to a social model of disability. Yet other members of staff and some of their member organisations were a bit more ambivalent about the shift to the social model. Enabling the core group of ‘believers’ to get their colleagues on board was a necessary approach, as the central team as a whole had the responsibility of persuading their member organisations that the improvements were necessary. In some cases this involved repeated conversations with specific individuals to help them to understand why membership needed to be restricted to specific organisations (i.e. those with majority disabled board members) if Disability Wales was going to promote the social model of disability. The director and staff had to be flexible and in some cases devote more attention to one or two individuals and organisations.

2 Employee involvement

Once the director had established the new ideology for the organisation, she had to set up a method of practice that was aligned with the purpose and ideology and engaged staff members. As previously mentioned, the director recognised that employees were the key deliverers of their services and were central in persuading members to get on board.

Engage employees – give them responsibility

An integral part – and outcome – of the change and improvement process for all of the organisations was employee engagement. There was recognition that if employees were given responsibilities in governing the direction and developing the specific actions that encompassed the improvement programmes, they would be more likely to take ownership of them.

When leaders give staff responsibility and empower them, it needs to be more than rhetoric. They must relinquish a degree of control, trust their employees to use their responsibility appropriately and give them adequate support. Examples given by Disability Wales staff highlighted how important it is for leaders not to undermine their words with contrary actions. In Disability Wales, one staff member said:

I think [the new director] trusts us to get on with things which is extremely helpful but it also means that you have to take responsibility and so you can’t pass the buck. It makes me think more carefully. She is a strategic thinker as well and she can bring our own experiences together and is not afraid to use us.

Establish a structure that allows engagement

The organisational structure of Disability Wales is hierarchical. With a more traditional hierarchy (i.e. directors, senior management, line managers, front-line staff), it is important that communication and interactions work both horizontally and vertically. In Disability Wales the staff are departmentalised, but under the new directorship the staff appreciated the ability to link up interdepartmentally and work together with different teams.

Get communication channels right

Staff at Disability Wales commented on the necessity to repeat and reinforce messages to communicate effectively. As previously mentioned, as part of its movement to the social model of disability, Disability Wales began requiring that the boards of its member organisations comprise disabled people as a majority of their membership (51 per cent). Despite various attempts and methods (e.g. newsletters, e-mails, phone conversations, roadshows) to communicate this information to their member organisations, staff reported having to deal with constant calls and queries from members who believed that all of their board members had to be disabled. Thus, there appeared to be a mismatch between the information Disability Wales thought it was offering its users and the messages received by the member organisations. It was not clear from our research what new methods (if any) the organisation was going to implement to spread their message more effectively.

Work with resistance

The term ‘resistance’ is often viewed as destructive and unhelpful to improvements. Several key messages emerged from the content analysis of all our case study organisations, including Disability Wales, of how to engage, utilise and set boundaries for resistance:

Staff at Disability Wales devoted substantial amounts of time to talk through issues with member organisations and individuals who were having difficulty adopting or understanding the need for the changes.

Give staff support to adjust and adapt to improvements

The organisational improvements resulted in changes to staff roles. Beyond supporting the training and development needs of staff and board members to enable them to deliver the changes, staff members reiterated the need for general staff support on behalf of their director. In Disability Wales the staff were clear about several ways they felt their director showed clear support for them:

3 Stakeholder involvement

In this context we refer to stakeholders as governing boards and people who use services or member organisations. This section will review some of our findings on effective stakeholder involvement from Disability Wales.

People who use services should be at the heart of change and improvements

While the involvement of people who use services and member organisations was central to the improvements at Disability Wales, there was recognition that you cannot force involvement. At the same time, member organisations needed to recognise that the more involved they were in the improvements, the more the improvements would reflect their aims, purposes and passions. Indeed, one of the representatives of a Disability Wales member organisation claimed, ’You get out what you put in.’

Related to the idea of understanding the boundaries of user involvement is the idea of ‘consultation fatigue’. In Disability Wales the staff carried out various consultation exercises with their member organisations. On this point, the staff were keen to point out to others the dangers of engaging too much: ‘Don’t consult them too often. I think there is a real problem and it is quite interesting when we look at how the disability equality duty has happened. I think there is a real danger of consultation fatigue.’

Organisations need to work in and with the communities they serve

Recent accusations from Disability Wales’s member organisations implying Disability Wales is too centrally focused on the Cardiff area highlighted the importance of viewing the ‘community’ more broadly. Disability Wales has recently started initiatives to provide a more inclusive service for organisations situated outside Cardiff. Disability Wales now holds regional network meetings on a quarterly basis that provide opportunities for members to come together across the region to engage in training and exchange information on key issues and best practice. Disability Wales recognised that its next step needed to be the creation of local offices within each region to further the engagement efforts. While the director spoke of general support and contentment with these regional initiatives, some of the representatives from member organisations felt that Disability Wales was too focused on the south of Wales. These examples showcase the importance of external stakeholders and community members in promoting improvements.