2. Employer education about stroke helps with the RTW process

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1 Important Issues for Employers to Consider When An Employee is Returning to Work after Stroke Rehabilitation Institute of Chicago National Institute on Disability and Rehabilitation Research 1 Stroke is a leading cause of death and disability in the United States. Impairments after stroke can vary considerably in type and severity, spanning physical, cognitive and emotional areas. As a result, recovery can be quite variable as well. In the case of very mild stroke, deficits can be minimal and subtle, and individuals may return to their prestroke lives quickly and completely. More severe strokes can lead to permanent disability and even death. With more moderate to severe strokes, recovery can be extended and return to prior life roles and activities much more uncertain. Return to work is an important and relevant goal after stroke. Returning to work (RTW) after such a life altering event can be a milestone in recovery and increase self-esteem and life satisfaction. Although stroke often affects those at or beyond retirement age, about onethird of stroke survivors are under 65 years of age. In addition, workers are retiring later in life, due to both financial and life satisfaction reasons. In , the Rehabilitation Institute of Chicago, with support from the National Institute on Rehabilitation and Disability Related Research, conducted a national survey of survivors regarding their thoughts and feelings about returning to work after their stroke. 2 The project was led by Robert J. Hartke, Ph.D., psychologist, and Robert Trierweiler, MS, certified rehabilitation counselor. The survey had been constructed over the prior three years through in depth interviews with survivors and consultation with employers and rehabilitation professionals. 715 survivors completed the 38 item survey. The items covered such areas as financial issues, the impact of impairments on return to work, the role of interpersonal support, how healthcare professionals supported return to work, organizational influences, as well as specific work and psychological factors. The survey drew respondents from 45 states. The sample was fairly evenly divided between men and women. The average age of respondents was 54 years and on average, they were 7-8 years post stroke. The sample was mostly white, college educated, and most were employed at the time of their stroke. Approximately half of the respondents were working either full or part time at the time of the survey. Page 1

2 After analyzing the results of the survey and further discussion with survivors, employers and rehabilitation professionals, the following issues have emerged as most important to guide employers in their effort to help stroke survivors return to employment. An employer s understanding and collaboration is essential to achieve a successful outcome in the complicated process of returning to work after stroke. 1. RTW is all about relationships and communication Returning to work is a complex process involving education, perceptions and attitudes, expectations, negotiations and accommodations. There are many key players and communication among them is important to facilitate understanding and problemsolving. Numerous fears for all can serve as barriers to effective communication. The stroke survivor may fear disclosing too much and risk losing a job. An employer may fear asking too much and being accused of discrimination. Maintaining supportive relationships that are open in communication is important in the process of RTW. o Not losing touch with the stroke survivor in both the early and later phases of recovery o Meeting with the employee before returning to work to clarify expectations and assistance they may need when they return o Setting up ongoing communication with a supervisor once back at work for continual feedback on performance o Identifying a confidant or mentor at work to offer support and help negotiate the reorientation of RTW o Looking at the current skills and talents of the stroke survivor and restructuring their job to emphasize their strengths for successful return to work 2. Employer education about stroke helps with the RTW process Despite the fact that stroke is a leading cause of death and disability, there is a surprising lack of knowledge about it in the general public. This can lead to lack of sensitivity, prejudice and even unintended discrimination in the work place. While only 26% of respondents to our survey felt discouraged with somewhat to a great deal of frequency by discrimination in their efforts to return to work, 71% feared being perceived as impaired if/when they return. While knowledge about stroke and its effects is important, employers need to bridge a gap in personally understanding the experience of recovery with returning employees who have experienced a stroke. Disability awareness becomes strongest when it is experienced in a personal way. In addition to the returning employee with a stroke, employers need to consider ongoing means of awareness training for recruitment of new employees who might also have experienced a stroke. Page 2

3 o Including the returning employee with stroke in planned disclosure and preparation of co-workers about what has happened to them and any special needs they may now have. o Maintaining open, ongoing communication with the employee through the course of their recovery before they return to work to get a more direct look at the tasks and effort required to recover o Making use of a Human Resources disability specialist or consult with a Vocational Rehabilitation Counselor o Including specific information about stroke in ongoing disability awareness programs for the human resources and other management work force o Consulting websites of major stroke organizations, such as the National Stroke Association (www.stroke.org) and the American Stroke Association (www.strokeassociation.org), for information on stroke that can be quickly and easily understood o Reading first person accounts of survival and recovery which can often be very effective in personalizing information and developing a more empathic understanding of the life of a recovering stroke survivor 3. Fatigue, mental and physical, is prevalent after stroke and should be considered in RTW efforts The impact of fatigue is an underestimated consequence of stroke. In our survey, 56% of respondents indicated it limited their ability to RTW, either somewhat or a great deal. It was the second most frequent stroke consequence cited as a limitation to RTW, even before thinking, communication and emotional consequences. And fatigue as a limiting factor was most important for those attempting to get back to work within the first 6 months to a year after onset. Fatigue can also come in mental and emotional forms as a survivor juggles the effort of recovery and ongoing self-care with the effort to return and maintain a work assignment. o The energy exerted by the stroke survivor in getting to and from work when setting up their work schedule. o Work from home options, if available, as a first step prior to return to the work place to reduce the physical demands of getting ready, getting to/from, and negotiating the physical and social aspects of the job o Developing a phased approach to work re-entry that could include a modified, gradually increasing work schedule from part to full time o Building in structured rest breaks during a work day Page 3

4 4. Emotional consequences of stroke can be significant barriers to RTW About a third of the survey sample indicated that emotional concerns impeded their return to work a great deal or somewhat. Stroke survivors express fear about how well they can perform on a job and how they will be perceived by supervisors and coworkers. But yet, successfully returning to work can have great psychological benefits for the stroke survivor beyond just having a steady income. Survey respondents indicated that it was more important to return to work to feel productive, good about themselves, competent, and independent than to make money. o Making Employee Assistance Programming more readily available to the returning stroke survivor for short-term support as needed o Arranging ongoing communication with the employee once back at work to provide feedback and identify any job modification needs o Providing survivors who have been out of the work force for an extended recovery with retraining to help build confidence o Developing an employee resource group for individual with disabilities, including stroke, to provide a resource for emotional support and networking within the company 5. Find, use, create resources, for RTW, especially in the long-term Using compensatory aides and accommodations for performing work tasks is frequently an essential element for doing well at a job after a stroke. According to the Job Accommodations Network, employers report that a high percentage (58%) of accommodations cost absolutely nothing to make, while the rest typically cost only $500. Identifying and requesting reasonable accommodations is a process that involves the stroke survivor, the employer, the survivor s physician/healthcare providers, and often a vocational rehabilitation counselor. For information on accommodations and the request process, consider contacting: o The Job Accommodation Network at or for free consultation o A regional ADA (Americans with Disabilities Act) center via the ADA National Network by calling or by going to o An ADA specialist, through the human resources department, if at a large corporation Vocational rehabilitation services can be highly beneficial in any return to employment after stroke. These services can include assessment of work capabilities, transferable skills analysis, vocational counseling, work site evaluations, and job coaching. Page 4

5 Consider... o Contacting the Commission of Rehabilitation Certification at or at to locate a certified rehabilitation counselor (CRC) in your area. o If on Long Term Disability benefits through a private insurance carrier, making use of resources offered by the company, which could include vocational rehabilitation by staff of the insurance carrier. o Contacting rehabilitation hospitals or centers in your local area that offer vocational rehabilitation services. 1 The contents of this guideline were developed under a grant from the Department of Education, NIDRR grant number H133B However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government 2 Approved by the Northwestern Institutional Review Board, STU44804 Page 5

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