Ways to Work Executive Summary

Executive Summary

This research is an initiative of the ParaQuad Association of Tasmania Inc, funded by the Motor Accident Insurance Board (MAIB) through its Injury Prevention and Management Foundation. The project commenced in September 2006.

The main aims of the project were to:

1.         provide a report identifying barriers and enablers to the employment of people with SCI throughout Tasmania.  Specific barriers to employment will be identified as well as those factors that act as enablers to employment;

2.         develop sets of principles or strategies for people with SCI, government and non-government agencies/providers, employers and peer support networks which would facilitate employment for the research group.   These strategies have been developed around the results of the consultations, relevant literature and current policies; and

3.         make recommendations to facilitate principles and strategies on the basis of the research results.

Tasmania has a small traumatic spinal cord injury (SCI) population, estimated at around 200-230 with more than half living in regional and rural areas. Tasmanians also experience many months away from home during their rehabilitation at the Austin and Royal Talbot hospitals in Victoria. Both of these factors impact on aspects of the SCI experience including information and service provision, family relationships and support, and the personal employment, family and friendship networks of the person with SCI.  All of these factors can ultimately affect the employment prospects for people with SCI.

In this research access to health and community support information and services and the experience of using services were found to be extremely uneven. Some individuals had or were receiving excellent care and support, while others reported quite devastating experiences. The literature on employment of people with SCI and the results of this research highlight the close connections between employment for people with SCI and adequate access to services and support. For example, if you are in pain and do not have other health and social problems under control you are less likely to work or more likely to have your working life interrupted.

Differences in the availability of health related services and community support between metropolitan and regional and rural areas has been a long standing issue throughout Australia and is perhaps exacerbated in this case because of the small scattered population of individuals requiring quite specialized support. Nevertheless, the State of Tasmania is itself quite small and several aspects of service delivery have been identified that would benefit from closer communication and coordination between organizations, people with SCI and their families.

The results of this research highlight the importance of the role played by families. From the very earliest time they provide support which may include financial assistance, personal care, transport, community access and accommodation.  While these supports may be indirectly related to employment some families were directly supporting the employment and study activities of the person with SCI through the provision of transport and sometimes assisting with actual work tasks. Families are the constant that ‘got people through the SCI experience’.

As families are themselves quite traumatized by the SCI event this research emphasizes the importance of caring for families and presents strategies for their support. Supporting families may be even more important in Tasmania than in other States because of the small number of people with SCI and the uneven spread of services.

The importance of maintaining networks was identified as highly significant in returning to or taking up new employment, training or study. Most interviewees who worked at some time since their injury did so through the assistance of their informal family and friendship networks or previous employment networks. The current system of undergoing rehabilitation outside Tasmania jeopardizes these networks causing people to grow apart and to lose contacts.  Among other strategies to maintain networks an early vocational intervention approach is suggested.

At the heart of solving this issue of unevenness in the experience of services is finding ways to empower people with SCI and their families. They themselves need to be able to: share information; know what services are available and how to have maximum involvement in those services; understand what standards of care are appropriate and what to do when it is not. There was so much frustration expressed by individuals about the amount of time and energy they spent trying to find out about things and being given the ‘run around’.

Information, peer support and advocacy are therefore central to the proposed strategies. At the same time suggested strategies for service providers aim to increase information, coordination between agencies and client involvement.

Closer communication between the individual with SCI and their families and service providers should begin at the early rehabilitation stage of care to try to compensate a little for the distance ‘factor’. This would enable early access to information about services available at home and the experiences of other individuals with SCI in Tasmania. It would also assist in maintaining family, friendship and employment networks from the earliest possible time.

The opportunities for people with SCI are changing rapidly as health and rehabilitation care practices and knowledge continue to grow, increasing life expectancy and quality of life. The other area of great social change that must benefit the SCI population are advances in technology, particularly computer technology. All but five people interviewed in this research used computers and the internet for a range of services and information. The literature on employment of people with SCI advocates access to computers and computer training as a means of promoting employment. Emphasis is placed on computer and assistive technology education during the rehabilitation at the Royal Talbot Hospital. Technology can also be utilized in a variety of ways to promote contact via webcams, email and websites during ‘distance’ rehabilitation. Computer technology can facilitate the provision of information specific to services and supports in Tasmania and enhance peer support for people with SCI and their families through internet discussions groups and forums.

The experiences of vocational rehabilitation and employment services appeared to be as uneven as experiences of health and support programs. Of concern was the number of people who ‘dropped out of the [employment] system’ after being employed or involved in a work trial or study which for various reasons had concluded.  Most of these incidents had occurred some years ago but there were at least three individuals currently experiencing difficulty ‘staying in the system’. The importance of long term ongoing support, clarity about the services being offered and the timeframes of support as well as avenues to re-enter the ‘system’ should not be underestimated. Suggested strategies again focus on self-empowerment as well as the provision of outreach programs and workshops providing links to health, community and vocational and employment service providers. The Commonwealth Government’s Welfare Reform program appears to mitigate against return-to-work for those who have been out of the workforce and receiving the Disability Support Pension (DSP) prior to May 2005.

Employers interviewed for this research were very positive about employing people with disabilities in their organizations and several organizations did so. They were prepared to undertake workplace and access modifications ‘at a reasonable cost’. There did not appear to be undue concern about any increased Workers Compensation costs. Most employers had a policy of allowing flexible hours and days of work but were less prepared to support ‘work from home’. Flexible arrangements may be the key to being able to work or study for some people with SCI who may need extra time to attend to the many complex aspects of SCI related well being.

Employers, however, were generally not well informed about government incentives available to organizations employing people with disabilities. Nor did they appear well informed about the kind of supports that might be required by people with disabilities and there were some possibly unfounded concerns around access and capabilities. Generally it seemed to be a case of, ‘of course we are willing to employ people with disabilities but we don’t really know much about the process’. There was little evidence of policies to attract people with disabilities to the workplace and a level of unsureness about the recruitment process. Strategies (including employer workshops) are suggested to increase employer awareness of employment issues for people with disabilities, in particular SCI, and information sources.  Importantly the information should be easily accessible, perhaps linked to websites of local organizations.

At the same time individuals with SCI also need to know about the supports and incentives, including workplace modifications, the rights and responsibilities of employers and employees, to help them argue their case for employment and assess their own workplace needs. Two case studies in this report highlight some exceptional employer/employee relations.

In this research those individuals who were working, loved working. Their workplace relations were good and ranged from having close connections to fellow workers to believing that good work relations depended on being able to do the job. Employers believed that people with disabilities made loyal employees. They stated that their staff generally became more aware of life’s challenges when they worked with people with disabilities and also more sensitive to each others needs and those of their clients.

Return to work or study for individuals with SCI was described as daunting and physically and emotionally exhausting. This was particularly so in the early stages of work but continued to a lesser extent over time. There was also concern during those early days about how other people would relate to an employee in a wheelchair and whether he or she would be perceived as able to ‘do the job’.  A major issue for SCI people in employment may be the extra ‘wear and tear’ on the person with SCI when working or studying and the reduced amount of time to care for oneself. Strategies to assist in return to work focus on empowerment and support through counseling and peer support.

There is paid work and unpaid work: unpaid work includes work trials in preparation for paid employment and also includes volunteer work without an employment goal. While the work trial experiences may not have resulted in ongoing employment they were generally regarded by interviewees as a valuable experience. They were important in allowing participants to assess their physical and emotional response to employment as well as test their skills. Although this research is about paid employment, the contributions to the community being made by people with SCI in an unpaid capacity were great. In addition, as involvement in volunteer work enables skills and confidence to grow, it may well provide a stepping stone to employment when the time is right.

This study has also identified two other areas for future research that relate directly and indirectly to employment. Firstly, research is required to develop and present information about an optimum range of exercise equipment and programs. There was a very big difference in what individuals with SCI knew about equipment and exercise, what they were doing to keep fit and in what equipment they were able to access.  Secondly, long term health issues and lack of finance to address health and equipment problems was a concern to several interviewees. Those who were not able to work due to SCI complications or other reasons and who were dependent on the DSP for income support over the long term faced severe financial hardship. These interviewees, some of whom had long expended the medical funding provided by their insurer, were totally reliant on the under-resourced public system for all of their health care and equipment needs.  As both these issues can impact on employment as well as quality of life, further research would be useful.

The recommendations and strategies for people with SCI stemming from this research focus on empowering people with SCI and their families and addressing service related issues with the aim of increasing employment opportunities. Recommendations and strategies for service providers and other agencies focus on increasing client inclusiveness, increasing service standards and equity of access. Strategies relevant to employers are about education, information, networking and chipping away at the barriers to employing people with disabilities.

The ParaQuad Assoc of Tasmania Inc is nominated as the ‘driver’ of these strategies and recommendations. The strategies have been developed in close consultation with the organization and, though they are a small organization, the executive believes that through prioritization and partnership with other sectors the strategies are achievable. In fact the core philosophy informing the strategies lies at the heart of ParaQuad Tasmania, the provision of information, support and advocacy aimed at promoting the self-reliance of people with SCI.

I wish to thank the ParaQuad Assoc of Tasmania Inc. for their support during this research. Scott Shaw, Chairperson of the Association and Local Government Councillor, and Jenny Stanzel, AM, Secretary gave unstintingly of their support, wisdom and ideas. Thanks also to Chris Bosworth, EO of ParaQuad Tasmania for his practical support. Both Scott and Jenny participated on the Advisory Group for the project and I wish to extend special thanks to other members of the Group: Lawrence Walsh, MAIB; Rodney Squires, Job Futures Tasmania; Annie Wells, consumer representative; Lorraine Clark, vocational rehabilitation provider; Sandy Burton, employer representative; and Colleen Hooper, WISE Employment.

Thanks also to all of the busy service providers who took time to share their thoughts and ideas. Not a single employer organization refused a request to be interviewed so many thanks also to those human resource managers who were so thoughtful and concerned about the employment of people with disabilities. Thanks to the MAIB for funding the project through their Injury Prevention and Management Foundation. Without their assistance it would not have been possible to conduct this research.

But, I particularly want to thank the people with SCI and family members who participated in interviews. They were so open and frank about their lives, experiences and feelings even though the interviews brought back some painful memories. They are the most resilient, imaginative, innovative and determined lot of people I have ever met.

Robyn Wolstenholme
Co-ordinator

Ways to Work Project
Exploring employment issues for people with spinal cord injury in Tasmania

Barriers and Enablers to Employment - Summary

Barriers

• A lack of information about services and supports in Tasmania

• Differences in service standards in Tasmania
• Negative experiences of vocational rehabilitation services and employment services
• Lack of long term vocational support
• Lack of information for employers

Enablers

• Families supporting people with SCI
• Family, friendship and employment networks
• Early contact with previous employer and early vocational intervention
• Usage and availability of computers
• Long term vocational support for people with SCI returning to work
• Flexibility of work arrangement and hours
• Workplace modifications, access and transport
• Unpaid work placements

Possible Enabler

• Other kinds of work

Recommendations and Strategies

• Strategies and recommendations which involve ParaQuad Tasmania are intended for both the organization and people with SCI and their families - the organization’s membership.

• Recommendations refer to those actions that may require a major shift in policy, legislation, practice and partnerships. Strategies refer to those actions which can be undertaken within existing policy and practice frameworks.

Recommendation 1 – Increasing access to information and specialized services for people with SCI
Tasmanian Spinal Teams to develop an integrated program across regions of Tasmania with unified standards of care for all Tasmanians with SCI. Information about the Spinal Teams and its services to be made available on the Tasmanian Department of Health and Human Services web-site.

Recommendation 2 – Develop systems across agencies to facilitate the provision of information and peer support for people with SCI and families during acute care and early rehabilitation
ParaQuad Tasmania to further develop protocols with the Austin and the Royal Talbot Hospitals to facilitate peer contact with the injured person and their family, early contact with Tasmanian service providers, and the provision of information packages developed for Tasmanians.

Recommendation 3 – Outreach support across regional areas
ParaQuad Tasmania to strengthen their outreach/networking program across the regions to ensure information and support is provided to people with SCI throughout Tasmania.

Recommendation 4 – Review and complaints mechanisms
ParaQuad Tasmania to consult with insurers and all relevant service providers and develop an ‘easy to use’ review/complaints model for agencies.

Recommendation 5 – Client inclusiveness and whole-of-life approach
Insurers and publicly funded service providers review their approach to service delivery of people with SCI and identify ways to increase client inclusiveness. This may include increased use of case management procedures encompassing a whole-of-life approach, ensuring client input and sign-off on reports and reviews and the implementation of easy-to-use complaints/compliments mechanisms. Program exit and re-entry strategies would be clearly defined.

Recommendation 6 – Counseling and psychological assistance
ParaQuad Tasmania to seek funding to develop a counseling service specializing in issues around SCI for those who have been injured and their families. It may be an adjunct to the peer support program and developed along the same lines as the program offered by ParaQuad Victoria or through privately contracted providers with specialist knowledge.

Recommendation 7 – Early intervention vocational rehabilitation pilot
In consultation with ParaQuad Tasmania and the Tasmanian Office of Post-Compulsory Education and Training (OPCET) a panel of vocational rehabilitation and vocational education providers seek funding to develop and pilot a program of early vocational rehabilitation intervention for Tasmanians with recent spinal cord injuries. The model should take account of the NSW SpinalWorks program and commence during the acute rehabilitation phase with proper regard to the physical and emotional well-being of the injured person. While taking account of the long term needs of  some individuals, its aims might include identifying vocational directions, keeping existing networks alive and promoting early return to work and involvement in training programs.

Recommendation 8 – A brokerage model for people with SCI seeking work
In consultation with ParaQuad Tasmania, Disability Employment Network members and the Tasmanian Disability Bureau explore the possibility of a brokerage model pilot to be incorporated into current processes. The aim would be to empower the person seeking work and maximize their control over the process and available resources.

Recommendation 9 – Long term support and getting back into the system
In consultation with ParaQuad Tasmania, Disability Employment Network members and the Disability Bureau monitor long term training and employment needs of individuals with SCI. The group might also identify key areas of opportunity for entry and re-entry into the work force and/or training programs.

Individuals with SCI undergoing vocational rehabilitation to ascertain clear exit and possible re-entry mechanisms with their providers.

Recommendation 10 – Regional fora/workshops
ParaQuad Tasmania to facilitate biennial information workshops in the north and south of Tasmania with themes on employment and community work participation including work and study entry – and SCI ongoing health promotion – at work and at home. Workshops to be held in conjunction with regional service providers from, for example, Job Network and vocational rehabilitation agencies, the Vocational Education and Training (VET) sector and Spinal Teams.

This initiative may build on the ParaQuad Tasmania outreach program recommended above.

Recommendation 11 - Workshops for employers about employing people with disabilities
ParaQuad Tasmania in partnership with Disability Employment Network members, the Tasmanian Disability Bureau, vocational rehabilitation providers and the Tasmanian Chamber of Commerce and Industry (TCCI), to jointly facilitate an annual employer forum to address workplace issues around flexible hours, access, modifications, work at home policies, staged return to work and work relationships.

The forum might include input from people with expertise in the area or who are undertaking significant initiatives eg. Diversity at Work program, Human Rights and Equal Opportunity Commission and the Employers Network

Strategy 1 – Early contact with rehabilitation providers
The Tasmanian Spinal Teams and insurer funded rehabilitation providers to facilitate early and continuing contact with the injured person during the acute ‘distance’ rehabilitation period. The aim of contact would be to provide information about Tasmanian services and ensure a smooth transition from acute rehabilitation to community living in Tasmania. Contact may be in person, by phone, internet and/or video; and,
ParaQuad Tasmania to investigate transport and accommodation funding sources for the injured person to undertake weekend leave to meet with Tasmanian rehabilitation specialists and providers prior to their discharge from the Royal Talbot.

Strategy 2 – Information about care and support services at home
ParaQuad Tasmania to consult with the Tasmanian Spinal Teams and insurers to update and broaden ParaQuad’s information package for people with SCI and families to be made available to them during the acute rehabilitation phase. The package should focus on:

• all those services and programs (health, community and recreational; private and public) likely to be required by an individual with SCI, families and carers;
• a map of how the system works;
• rights, responsibilities, standards of services and complaints mechanisms; and
• initial information for employers about SCI and the workplace eg.  vocational rehabilitation, work modifications, funding available for wage subsidies etc.

Information should be available in hard copy and on the ParaQuad Tasmania and other relevant websites.

Strategy 3 – Peer support and mentoring for people with SCI with an on-line forum
ParaQuad Tasmania  continue to develop a peer/mentor support program to support newly injured persons while in the Talbot by assisting in maintenance of personal and family networks and thereafter. The program would be enhanced by the provision of an on-line forum promoting discussion in all relevant aspects of life after SCI including access to services, recreation, use of equipment and self care and going back into vocational training/study and work. The program should be able to support mentor linkages across vocational and interest areas as well as support related to SCI.

Strategy  4 – Advocacy
ParaQuad Tasmania to seek funding to employ an advocate to assist with access to services and standards and complaints issues across a full range of services for people with SCI.

Strategy 5 – Hospitalisation
ParaQuad Tasmania to consult with hospital educators and key Spinal Team members in each region and develop a protocol for care of people with SCI while in hospital. This will include consideration of:

• notes on hospital files to alert staff of the need to contact a spinal team member;
• provision of information sheets to hospital staff by the person with an SCI being hospitalized about the care required ;
• personal carers providing care program during the hospitalization period and/or additional staff for people who are wheelchair dependent.

Strategy 6 – Early information for families
ParaQuad Tasmania to consult with Spinal Teams across the State, with families and the Austin and Royal Talbot Hospitals and further develop the initiative of the northern Spinal Team. The package could be made available to families prior to leaving for Melbourne or soon after arrival at the Austin Hospital.

Package may contain information about:

• Acute care and  rehabilitation program and maps of hospitals
• Accommodation options for family members
• Information about social security and Centrelink
• Information about Workers Compensation and theMAIB claims and benefits
• Information about rights and responsibilities in relation to insurer and government programs and their complaints and appeals mechanisms
• Information about community legal assistance in Tasmania
• Information about travel assistance
• A list of resources and supports relevant to this early stage
• A list of resources and publications for children of parents with SCI
• Resources and packages available through State and Commonwealth disability services.

Information with relevant links should also be made available on ParaQuad Tasmania website

Strategy 7  – Supporting families – peer support
ParaQuad Tasmania to develop a small network of families of individuals with SCI to provide peer support to other families for any aspect of the situation after injury. They may be available by phone or in person.

Strategy 8 – Supporting families in the early stages – travel
ParaQuad Tasmania to negotiate logistics and further options for accommodation and travel to Melbourne for family members while injured person is in the Austin or Royal Talbot hospitals.
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Strategy 9 – National online forum for families of people with SCI
In consultation with other State and national SCI organisations, ParaQuad Tasmania to foster the development of a national online forum network for families of individuals with SCI.

Strategy 10 - Information for friends and family at home and facilitating contact.
ParaQuad Tasmania to consult with the Royal Talbot Hospital and Tasmanian Spinal Teams and:

• develop an information package/DVD about SCI for members of the extended family, friends and employment networks of the injured person;
• make weekend leave for the injured person (as physically appropriate)  from the Royal Talbot hospital to home in Tasmania an integral part of rehabilitation;
• encourage the injured person to access the Tasmanian peer support program to contact friends; and
• to encourage computer based internet contact – including web cams and YouTube/MySpace - between injured person and those at home. ParaQuad Tasmania to assist families if necessary in the provision of equipment eg computer, web cam and internet connection.

Strategy 11 - Promote use of computer technology and assistive devices in vocational programs.
ParaQuad Tasmania to promote the value of computer access programs and training for people with SCI as a means of gaining lifestyle independence, facilitating further study and training and promoting employment. The use of computers and internet to be an integral part of vocational programs.

Strategy 12 – Information about employment and employment opportunities for people with SCI
ParaQuad Tasmania to develop a ‘web’ page with information (with a Tasmanian focus) about employment and vocational rehabilitation programs with links to relevant employer, insurer and government web-sites. It could contain case studies of people with SCI working in particular occupations and provide examples of workplace arrangements.

Strategy 13 – Welfare Reform
ParaQuad Tasmania in consultation with other SCI organizations, to monitor the effects of the Commonwealth Government’s Welfare Reform program in relation to review, long term support, access to training, education and employment and a person’s financial situation.

Strategy 14 – Information for employers
ParaQuad Tasmania to consult with the Tasmanian Chamber of Commerce and Industry (TCCI) and develop an appropriate local information package for employers about employing people with disabilities/SCI. Information should appear on websites of both organizations and might encompass:

• Workplace modifications and funding and who to approach
• Access regulations and issues

• Workplace vocational support
• Flexible work arrangements and Worker’s Compensation issues
• Possible carer involvement at work
• Guidelines for selection and interview of people with disabilities
• Links to government sites for work subsidy details

This information page may be an extension of the employment information page for individuals with SCI, Strategy 12.

Strategy 15 – Access and Transport
ParaQuad Tasmania and its members to maintain an involvement in Access Committees and access auditing. Information about access and transport issues in Tasmania could be made available on a dedicated page on the ParaQuad Tasmania website.

Suggested organisational responsibility for carrying out recommendations and strategies

N.B.*Suggested drivers of the recommendations and strategies are noted in Bold

How this report is structured

This report consists of eight chapters. The first two chapters present methodology and background to the report, a profile of participants as well as information about SCI and its incidence in Tasmania. Chapter 3 outlines some key legislation, policies and key Tasmanian services relating to employment and SCI. Chapter 4 summarizes previous studies about employment of people with SCI. It also outlines employer issues, incentives to employ people with disabilities and some employer initiatives.

Chapters 5 to 8 present the findings of the research and identify the issues that provide barriers to employment and those factors that enable employment for people with SCI in Tasmania. Quotes from interviews are presented and arguments are put forward for recommendations and strategies to address each barrier and enhance each enabling factor. Finally there are suggestions for further research followed by the Conclusion. 

Appendices contain the open ended interview schedules used when interviewing individuals with SCI and employers.