Facilitating a Positive Culture for the Disclosure of Workers’ Disabilities: Experiences of Developing a Pilot Volunteer Intervention Programme within a Higher Education Institution

Background: Within the UK an individual is disabled if he or she has an impairment that has a substantial and long-term negative effect on their ability to undertake daily activities. Once a disability is disclosed to an Employer, the Employer has a duty to make reasonable adjustments at work for the employee. However, because of the stigma often associated with being disabled many individuals are fearful of disclosing their disability as they fear they may be discriminated against. This apparent fear appears to be reflected in the disability disclosure rate for English universities, which in 2014 was only 3.9% . This paper outlines the work undertaken at one English university to improve the staff disability disclosure rate (currently 2%) through the application of a volunteer intervention programme. This programme has been designed by the university’s Disabled Staff Network (DSN) and is supported by the School of Health Sciences. Method: The aim of the intervention programme is to develop a positive culture of disclosure by providing a confidential guidance and information service that enables workers to make an informed decision regarding disclosure as well as a series of seminars that provide co-workers, supervisors, and managers with an opportunity to explore their responsibilities about supporting disabled staff in the workplace. An action research approach has been taken using a mixed methodology, which included a qualitative analysis of narrative from case studies and an analysis of a participant satisfaction survey using descriptive statistics. Findings: The outcome of this initial work has enabled the DSN to confirm the relevance, suitability and effectiveness of the peer to peer support service and the disability awareness seminars. Conclusion: No attempt has been made (at this stage) to establish cause and effect. Therefore, further empirical evidence is needed of the benefits of this programme.


Background
According to the Equality Act 2010 an individual is disabled if he or she has an impairment that has a substantial and longterm negative effect on their ability to undertake daily activities [1]. Once a disability is disclosed to an Employer, the Employer has a duty under the Equality Act 2010 to make reasonable adjustments at work for the employee. However, because of the stigma associated with disability [2] many individuals are fearful of disclosure as they may be discriminated against. For example RADAR [3] has shown that 75% of those working in senior management roles that had an option to reveal their disability still chose not to do so. Further, a survey conducted by UCU [4] found that disabled staffs were more likely to be subjected to performance management and capability procedures.
Given that disabled people make up 19% of the UK working population [5] greater transparency concerning disability has become a priority in developing a workplace culture that is disability friendly. Key to this culture is an understanding of the social model of disability [6] which is reflected in the Convention on the Rights of Persons with Disabilities [7] which, for example states that: "…disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others." -United Nations, 2008: 1 In other words, people become disabled because of the way society is organised rather than a person's impairment. The social model of disability advocates for the removal of any barrier that can restrict choices for disabled people, and when these barriers are removed disabled people can be independent and have choice and control of their lives.
The Public Equality Duty, introduced in 2011 indicates that Employers can play an important role in shaping a disability friendly culture at work and more Employers are becoming aware that they can create a much happier and efficient workforce in doing so. For example, the Higher Education Equality Challenge Unit [8] has stated it is more cost-effective to plan adjustments than to correct unpredicted mistakes. This realisation is (perhaps) reflected in disability disclosure rates for English universities which have shown an increase from 2.2% in 2003/04 to 3.9% in 2012/13 [9].
The University of Sherwood's annual equality report published in 2015 shows that the number of staff disclosing a disability is 2.1%. This is 50% less than the target referenced in the university's strategic plan for 2010-2015. This figure has remained constant for the past 3 years and is circa 50% less than the national disclosure rate reported by ECU [9]. As a consequence the Disabled Staff Network (DSN) at the university is working with Human Resources (HR) to develop strategies that will improve disclosure rates, and has designed a volunteer intervention programme assist in the development of a disability friendly culture.

The Disabled Staff Network (DSN)
The DSN is one of 7 equality networks that exist within the university. It is coordinated by a chairperson. There is also a deputy chairperson responsible for policy review; and a deputy chairperson responsible for membership liaison, including organisation of meeting venues and agendas. Since July 2015, membership has increased from 28 to 46 members and now includes representatives from campus unions. For example, one DSN member is a University and Colleges Union (UCU) equality officer and one is a UNISON shop steward. One member is also affiliated to the National Association of Staff Disability Networks (NASDN). Meetings are held quarterly, midweek at lunchtime. During the first part of the meeting an invited guest speaker presents on policy affecting disabled workers within the university. The second half of the meeting is held in confidence as individual cases are discussed and individual support is offered. As requested by DSN a member there is no attendance record, and no minutes are kept of DSN meetings. Instead, notes from are circulated by the chair for verification and action. Once confirmed, these notes are submitted to the Staff Equality and Diversity Committee (SEDC) for further discussion. The SEDC reports directly to the university's Equality Diversity and Inclusion Board, which comprises of members from Senate. The DSN's deputy chair (liaison) is a member of SEDC.
The DSN aims to: (1) Develop a culture of positivity and a spirit of openness, which enables disabled staff to contribute more effectively to the overall work of the university; (2) Empower disabled staff to become more proactive in policy decision making; and (3) Develop strategies to improve the university's disability disclosure rate. The DSN produces annual terms of reference, which include a work plan ("DSN Activities Since 2015"). Historically, the work of the DSN is confounded by having no available budget for activities. Also, departmental heads are reluctant to release members to attend meetings. Also, until recently the university has ignored requests from disabled staff to: Recognise the social model of disability in its charter of incorporation; consult with disabled staff prior to the introduction of new policies and procedures that may disadvantage them, as recommended by the Public Equality Duty • To introduce an Equality Impact Assessment for Project Transform (a new staffing strategy) as recommended by the Public Equality Duty .
• The introduction of a disability leaves policy as recommended by Equality Challenge Unit.
• Request for an equality impact assessment prior to the introduction of Student Evaluation of Teaching (SET's).

Consultations with Human Resources (HR)
• Equality Impact Assessment for Project Transform.
• The university's people strategy for 2020 and its impact on disabled staff.
• The university's HR Strategy for 2020 and its impact on disabled staff.
• Senate-International Day of the Disabled Person and the social model of disability.
• Senate-The need for an equality impact assessment prior to the introduction of Student evaluation of Teaching (SET's).

On-going developments
• With HR to develop a Peer to Peer Disability Support Service (PPDS).
• With HR to develop a series of disability awareness raising seminars to support the introduction of PPDS.
• With HR and the School of Health Sciences to initiate the "Time to change" mental health initiative.
• With Professional Development Team to implement the second round of the Calibre project-a leadership programme for disabled staff.

The Intervention Programme
DSN is to develop a positive culture for disclosure of workers' disabilities. It does this by providing a confidential peer to peer guidance and information service that enables workers to make an informed decision regarding disclosure of their disability; and providing lunchtime disability awareness seminars for coworkers, supervisors and managers and managers, so that they might explore their responsibilities with regard to disability in the workplace. Each of these interventions is now discussed.

Peer to peer disability support service (PPDS)
The PPDS provides confidential guidance and information on disability issues for all grades of staff who work at the University of Nottingham. The PPDS is not intended to be a substitute for other professional disability services provided by the University.
Rather, any guidance and information provided is based on the lived experience of disabled staff who have worked at the university.
The PPDS provides information concerning the pros and cons of disclosing a disability and reasonable adjustments at work. It provides disabled workers with an opportunity to discuss their fears and concerns with an individual who has had personal experience of these issues, so that they may reach an informed decision regarding disclosure.
The PPDS is a completely confidential service and is not used by the DSN or the university to collect any data concerning an individual's personal circumstances. All correspondence with individuals is destroyed once their queries have been answered.

Lunchtime seminars for co-workers and managers
A series of lunchtime seminars have been developed to support the introduction of the PPDS. Prior to their introduction the seminars were discussed at DNS committee, SEDC, and with the university's HR department. No changes were made to the content as a result of these preliminary discussions. The seminars introduce co-workers and managers to the social model of disability and how this impacts on the daily working lives of disabled people. Issues such as ableism and unconscious bias; disclosing a disability; reasonable adjustment; and supporting the disabled person at work are discussed below in the "Lunchtime Disability Awareness Seminars":

Lunchtime disability awareness seminars
Disability discrimination: The public sector equality duty states that public bodies must: eliminate discrimination, harassment, victimisation and any other conduct that is prohibited by, or under the Equality Act. The concept of unconscious bias and how this may contribute to ableism within the workplace is explored during this seminar.
Enabling not disabling: How is disability defined? Is disability a charitable, medical or social construct? What barriers exist in the workplace for disabled people? What are the rights of people who have a disability? How can disabled people challenge ableism and assert their rights? The issues that enable or disable the person with a disability are explored.

Disclosing a disability:
The University's 2014 annual diversity report reveals that the number of staff disclosing a disability is 2%. This is 50% less than the target referenced in the university's strategic plan for 2010-2015. Further, this figure has remained constant for the past 3 years. This workshop will explore the factors that enhance and inhibit disclosure of disability within the work place.
Reasonable adjustment: When an employer knows or reasonably ought to know of a disabled person's disability, they are under a duty to make "reasonable adjustments". This seminar will discuss personal experience and case study relating to reasonable adjustments that have been made within the work place and will identify what is regarded as best practice in this area.

Supporting the disabled person at work:
The UN Convention on the Rights of Persons with Disabilities states that "…disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others." This seminar will explore the ways in which the DSN and the University of Nottingham is working to reduce barriers within the workplace for disabled staff.

A volunteer model of delivery
There is no budget for DSN activities. However, the university does encourage volunteer activity. It does this through its volunteer award scheme and the recognition of a citizenship category within individual departmental workload plans. The work of the DSN is based on a volunteer model of delivery and is supported by the university's HR department and campus unions. Members of the DSN give their time freely to progress disability issues within the university. However, experience shows that the volunteer approach is more sustainable if interventions are first piloted (and then refined) before they are fully implemented. The purpose of this report is to disseminate the outcomes of the initial evaluation conducted since the pilot began.
The intervention programme is led by the DSN chair who is a member of the School of Health Sciences and has been able to negotiate 160 citizenship hours in his workload plan to set up the project. The project lead is supported by individuals from the DSN who have undertaken successor training so that they (1) may eventually assist in the delivery of the PPDS service; and (2) take over delivery of the seminars once they have been evaluated and refined. The successor training programme includes the advocacy and unconscious bias training that is provided for all staff by the university's professional development department.
The university's HR department and the local UCU committee are also supporting the project and UCU have marketed the intervention programme via their online newsletter, and through its local network of departmental representatives. The university provides light refreshments accommodation, information technology support, and library services free of charge in support of DSN activities. The local UCU office provides some administrative support for DNS activities, as do the School of Health Sciences.
The resources required to deliver the pilot intervention draw on the 160 hrs of citizenship already allocated to the DSN chair, which includes the following: (1) the provision of a Peer to Peer Disability Support Service-3 hrs per week for 40 weeks-a total of 120 hrs; and (2) the preparation for, and delivery of 5 Disability seminars-8 hrs per seminar-a total of 40 hrs. It is estimated that a further 80 hrs is required to fully evaluate the impact of the programme. However, as there is no internal funding to support this shortfall the DSN is continuing to seek a small grant to offset this shortfall, and if successful will utilise this funding to "buy out" the project lead's time from his teaching duties.

Methodology
An action research approach has been adopted using mixed methodology, which has included a qualitative analysis of narrative from case studies, and an analysis of responses to a participant satisfaction survey using descriptive statistics in an attempt to identify the effectiveness, relevance and suitability of the interventions delivered.
Carr and Kemis [12] state that action research is: …a form of self-reflective enquiry undertaken by participants in social situations to improve the rationality of their own practices, their understanding of these practices, and the situations in which the practices are carried out.
According to Koshy [13], other terms used to describe action research include community-based study, co-operative enquiry, action science and action learning. Koshy [13] describes the characteristics of action research. Firstly, action research is a process that involves action, evaluation, critical reflection, and-based on the evidence gathered-subsequent changes to practice. Secondly, action research is participative and collaborative; it is undertaken by individuals with a common sense of purpose and is based on reflective interpretations made by participants. Finally, action research involves problem-solving and the solution to the problem leads to the improvement of practice [13]. Waters-Adams [14] observes that action research is about practitioners striving to understand and to improve their practice. He indicates that this can operate at a very personal level. For example, McNiff and Whitehead [15] suggest that practitioners involved in action research will often engage in a systematic process of self-questioning. The process suggested by McNiff and Whitehead has assisted the DSN in the development of its action research plan (Discussed below in the "The Action Research Plan").

Ethical issues
Consideration has been given to the ethical guidelines produced by the UK Department of Health [16]. These guidelines state that an evaluation of service provision does not require approval from a research ethics committee. However, it was felt that best practice guidelines for service evaluation still needed to be followed. In particular, the need to ensure that: individuals have given their informed consent to participate; information is treated in the strictest confidence and not disclosed to a third party without prior consent; participants can choose to opt out should they wished to do so. In addition, the DSN were mindful that the percentage of university staff who have declared a disability is very low (2%) therefore it was important not to disclose biographical data such as age, gender, place of work of work so that participants could not be identified. For example, in making an enquiry to the peer to peer support service one manager asked: "It would be helpful for a member of staff if I could find a peer who has dyslexia? Are you able to help with this at all?" The manager was informed that disclosure of an individual's name would breach the ethical protocols devised for the service but was advised that the staff member could contact the service directly for advice.

The action research plan
What is our main concern? The University of Sherwood's 2015 annual diversity report shows that the number of staff disclosing a disability is 2.1%. This is 50% less than the target referenced in the university's strategic plan for 2010-2015. This figure has remained constant for the past 3 years and is circa 50% less than the national disclosure rate reported by ECU [9].
Why are we concerned? The literature suggests that low disability disclosure rates may be indicative of an oppressive or discriminatory culture.
What should we do about the situation? Our aim is to develop a positive workplace culture for the disclosure of workers' disabilities. We will do this by providing a confidential peer to peer guidance and information service that enables workers to make an informed decision regarding disclosure of their disability; and also provide a series of lunchtime disability awareness seminars for co-workers, supervisors and managers and managers, so that they might be better equipped to support disabled staff in the workplace.
How should we gather evidence to demonstrate our intervention has been successful? A mixed methodological approach towards data collection will be used. This will include a qualitative analysis of narrative from case studies, and an analysis of responses to a participant satisfaction survey using descriptive statistics in an attempt to identify the effectiveness, relevance and suitability of the interventions delivered.
How should we test the validity of our claims? An account of our beliefs and assumptions about the nature of the research problem will be tested at UCU's disabled members' standing committee and at conference [17,18].

How should we check the conclusions we have come too are reasonably fair and accurate?
The DNS recognise the need to demonstrate "trustworthiness". Babbie and Mouton [19] define this as the need to demonstrate: credibility; transferability; dependability and confirmability (see lessons learned).

Results and Findings
This report relates to the first cycle of evaluation that has been conducted since commencement of the pilot programme. Therefore, the results need to be treated with caution.
The evaluation has been conducted in two parts: (1) An analysis of the feedback received regarding provision of the peer to peer support service; and (2) An analysis of feedback from participants who attended the disability seminars. Each of these interventions was considered for their effectiveness, relevance and suitability.

Evaluation of the peer to peer disability support service
Since 1 st April 2016 this service has dealt with 19 enquiries from academic and non-academic staff. Only 3 of the 19 enquirers chose to comment on the service. However, it was felt that during the initial stages of the project it was important to gain the trust of service users by strictly adhering to the ethical guidelines that were devised for the pilot. Therefore, it was decided not to follow up non -responders. Rather, protocols for the collection of user narrative were (later) revised to facilitate a more complete and detailed account of service user opinion (see lessons learned).
The reasons given for contacting the service included the following. For example, one non -academic member of staff indicated: While the non-academic member of staff commented: "Thank you for the information. This was priceless."

Evaluation of the disability awareness seminars
Ten seminars were delivered on 2 different university sites to 76 members of academic and non-academic staff. Those who participated in the seminars were asked to complete a participant satisfaction survey. This questionnaire consisted of 11 items relating to the teaching and delivery of the seminars (Table 1). Respondents were asked to indicate anonymously whether they were satisfied or dissatisfied with each item. Twenty-seven (35%) completed the questionnaire indicating that they were satisfied with each of the 11 items.
Respondents were also asked to indicate whether the seminars would make a difference to the way in which they carried out their work. Thirty-five percent of respondents (27) indicated it would. Of these, 15% indicated that the seminars would make a huge difference to the way in which they carried out their work. Thus, confirming the relevance of the seminars. The following additional comments were also received: "These seminars should be mandatory for all staff" and "All newly appointed managers should participate in these seminars." Thus, confirming the suitability of the seminars.

Lessons learned
Data emerging from this first cycle of evaluation appears to confirm that the pilot intervention program was effective, relevant and suitable. However, based on stakeholder experiences of planning and delivering the program some modifications were made. These modifications and the reasons for the change are now discussed.
Action research is a value laden process carried out by practitioners who see themselves as agents for change, who work in a collaborative way, to bring about changes to (and improve) their working practice [15]. The participatory nature of action research is outlined by Meyer [20], who states action research is based on democratic principles and that participants play an active part in the research and the change process. This project attempted to bring together two distinct communities of practice, each with their own set of values and beliefs, in an attempt to facilitate an appropriate culture for the disclosure of worker's disabilities. However, the values and beliefs expressed by HR specialists were found to be antagonistic to some members of the disabled community, particularly HR demands to demonstrate there was a "business case" for the peer to peer disability support service and that this service would be "sustainable". The language used by these HR specialists is consistent with the managerialist approach that is now prevalent within UK higher education, which is heavily influenced by discourses and policies that are associated with performativity, and are seen by some individuals as a threat to professional autonomy as well as a potential threat to the action research process [21,22]. For example, during the initial delivery of the seminars HR were concerned that case studies, which depicted the "lived experience" of disabled employees, should show the university (and its managers) in a more positive light. However, the evidence clearly demonstrated that seminar content was effective, relevant and suitable for the needs of seminar participants (Table 1). Despite this, HR insisted on implementing a series of on-line disability awareness seminars that would demonstrate a "more corporate" approach. Disabled staff were concerned that a unilateral decision had been made and felt that discussion regarding the lived experience of disabled staff may be lost during the on-line learning experience-they were concerned that this would minimise the effectiveness of the disability awareness training. In addition, some modifications were also made to the peer to peer disability support service or PPDS as DNS members were reminded by HR that the university had a duty of care to its employees-to ensure that that provider of the service were adequately trained-and that the service did not contravene health and safety or data protection requirements. With these points in mind a role description for the PPDS advisor was developed by DSN members and successfully negotiated with First, the training of advisors-the adviser will now be expected to undertake appropriate training for his or her role. This would include (as a minimum) the university's online equality and unconscious bias training. In addition, the role holder would be expected to have completed either the university's advocacy training; the calibre programme; or have attended each of the five lunchtime disability awareness seminars (seen in "Lunchtime disability awareness seminars").
Second, the knowledge and understanding required of the advisor-he or she will now be expected to have an understanding of the university's Equality and Diversity and Inclusion (EDI) governance structure including the HR People and Culture Team, Faculty EDI committees, SEDC, and other equality networks. Also, knowledge of university guidelines for managers working with disabled staff and guidelines for referral of staff to Occupational Health. The advisor will also be required to have knowledge of the Equality Act, and the Public Equality Duty; as well as an understanding of the role of equality organisations such as ACAS, EHRC, and ECU.
Third, advisor workload-since its inception the PPDS has provided guidance and support to 19 individuals. Therefore, the advisor can expect to deal with 3-4 cases per month, each approximately one hour in duration. It is expected that the role holder will negotiate time for this activity with their head of department as part of their individual workload plan.
Next, the monitoring of advisor caseload-a short (confidential) report will now be completed by the advisor on completion of each case, and submitted to the chair of the Disabled Staff Network. A periodic review of completed cases will be undertaken by the DSN chair and an individual from HR to ensure that individual case load is manageable and the advisor is not under any undue stress. This periodic review will also enable the project lead to take a more considered approach towards data collection and analysis, 93% (25) were satisfied that objectives of the seminars had been clearly identified to them (E) 96% (26) were satisfied that the course had met their expectations (E) 85% (23) were satisfied that the content of the seminars were relevant to their work (R) 96% (26) were satisfied that the seminar content was organised and easy to follow (E) 96% (26) found the distributed materials helpful (S) 96% (26) indicated that the seminar leader was knowledgeable (S) 96% (26) indicated that the quality of instruction was good (S) 93% (25) indicated that course participation and interaction was encouraged (S) 89% (24) indicated that adequate time was provided for questions and discussions (S) 93% (25) indicated that the time allocated for the course was sufficient (S) 96% (26) indicated that the meeting room and facilities were adequate and comfortable (S) Key: Effective (E); Relevant (R) and Suitable (S). and to identify emergent themes and trends in the presence of a critical friend. Last, information governance. The advisor will now be expected to comply with university guidelines for the use of information technology as well as the requirements for data protection. Therefore, correspondence with service users will continue to be treated as strictly confidential.

Discussion
The DNS is aware that the methodology of action research is mostly qualitative and developmental in its approach [13]. However, this does not detract from the need to ensure a rigorous approach, and to this end the DNS has recognised the need to demonstrate trustworthiness during its research activity (seen in "The action research plan"). Babbie and Mouton [19] outline strategies used in social research to ensure "Trustworthiness". These include: credibility; transferability; dependability and confirmability.
In this study, strategies to achieve credibility included the use of a tried and tested participant satisfaction questionnaire and the use of different research methods such as case study and survey-what Bryman [23] refers to as triangulation. In addition, DSN members who attended the disability seminars were asked to check comments from the satisfaction survey to ensure an appropriate fit with the impact measures devised for the evaluation process to determine the effectiveness, relevance and suitability of the seminars.
Also, a comparison with previous literature has been made to test interpretations and emergent experience. For example, the ECU data on national disclosure rates has been particularly helpful in assisting the DSN to identify the shortfall in local disclosure rates, while UCU literature has identified a possible explanation for this shortfall.
With regard to: transferability and dependability a detailed account of the sampling framework and methodology has been given to allow the study to be repeated. It is accepted that sample size for the case studies was restricted due to the strict application of ethical criteria and that a larger sample could have been drawn had these criteria not been applied. However, adjustments have now been made to PPDS case study supervision, which should ensure that a more detailed account of each case study will be available in subsequent cycles of evaluation.
Finally, conformability has been achieved through the use of methodological triangulation, which included the use of case study and a participant satisfaction survey. Also, the adjustments made to PPDS case supervision will in future introduce a critical friend to confirm (or refute) emergent trends and themes. In addition, an account of the researcher's beliefs and assumptions about the nature of the research problem has been tested at standing committee and at conference [17,18]. While the use of tables and diagrams to provide an "audit trail" of activities and findings as they have emerged, are also provided.
However, no attempt (at this stage) has been made to establish cause and effect and further empirical evidence is needed of the benefits of this type of programme. Therefore, this programme should be the subject of further and on-going action orientated research, which will need to be appropriately funded.

Conclusion
The literature suggests that low disability disclosure rates may be indicative of an oppressive or discriminatory workplace culture. At the University of Sherwood disability disclosure is currently 2.1%. This is 50% less than the target referenced in the university's strategic plan and is a figure that has remained constant for the past 3 years. It is also significantly less than the national disclosure rate reported by ECU [9]. An attempt to introduce a pilot volunteer intervention programme so that an appropriate culture for the disclosure of worker's disabilities could be developed has led to the successful development of a peer to peer disability support service and the provision of disability awareness seminars for co-workers, supervisors and managers, albeit with some minor modifications. Both the DNS and HR are interested to see what effect (if any) the modified intervention programme will now have on local disclosure rates.