1. Emotional consequences of stroke can be significant barriers to RTW

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1 Important Issues for Stroke Survivors to Consider When Returning to Work 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 greatly in type and severity, including physical, cognitive and emotional areas. As a result, recovery can be quite different for each person. In the case of very mild stroke, deficits can be minimal and hard to detect, and individuals may return to their pre-stroke lives quickly and completely. More severe strokes can lead to permanent disability and even death. In the case of more moderate to severe strokes, recovery can take a while and return to prior life roles and activities is much more uncertain. Return to work is an important and worthy goal after stroke. Returning to work (RTW) after such a life changing event can be a very important sign of recovery and contribute greatly to self-esteem and life satisfaction. Although stroke often affects those at or beyond retirement age, about one-third 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 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 was put together over the prior three years through interviews with survivors and meetings with employers and rehabilitation professionals. 715 survivors completed the 38 item survey. The items covered such areas as financial issues, the impact of disability on return to work, the role of personal support, how healthcare professionals supported return to work, organizational factors, as well as work specific 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. About half of the respondents were working either full or part time at the time of the survey. After studying the results of the survey and further discussion with survivors, employers and rehab professionals, the following issues have been found to be most important to stroke survivors in the effort to return to employment. Page 1

2 1. Emotional consequences of stroke can be significant barriers to RTW Depression and anxiety are common in individuals recovering from stroke. About a third of the survey sample indicated that emotional problems blocked their return to work a great deal or somewhat. The sudden change in physical and cognitive functioning can cause a change in self-image bringing with it loss of self-esteem and confidence. Stroke survivors express fear about how well they can perform on a job and how they will be seen by supervisors and co-workers. 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 Use of various forms of self-expression (writing, blogging, giving speeches) as a means of building self-esteem and confidence. Telling one s story of recovery can encourage and emotionally strengthen you by focusing on your accomplishments and skills needed in recovery o Finding a mentor to help guide thinking and efforts to return to work. This could be a professional, but may also be less formal, such as a another stroke survivor, a friend or family member o Ways to get comfortable taking risks and being confident to represent your best qualities and network with others. This might start by attending stroke survivor meetings, joining research studies related to stroke and recovery, or taking part in volunteer work to relearn how to stick to a schedule and take on responsibility o Using Employee Assistance Programming, if it exists at your workplace, for short-term support as needed o Getting help with job search and interview skills training to help build confidence and handle rejection, especially if you ve been out of work for an extended period and are seeking a new job. 2. Coping: being realistic, staying hopeful Returning to a job after stroke can be a long process requiring persistence and a strong desire to work again. Yet successful return requires survivors to be honest with themselves about what they can and cannot do in view of their disability. Survey respondents most frequently listed belief in oneself and being realistic and accepting limitations as important strategies in coping with the return to work process. Balancing a realistic view of one s skills and stroke limits with a spirit of hopefulness is important to keep your motivation strong. Accepting the fact that recovery will not be complete (meaning being the same as you were before the stroke) can sometimes clear the way for a survivor to think differently about being productive and how work will play a part in their life. Page 2

3 o Not rushing back to work so that you have time to get a good sense of what you can really expect of yourself o Asking others for feedback, such as doctors, therapists and family, to get a reality check on your ability to return to work, if you should return, when and how o Thinking about what keeps you hopeful in life. For example, for some, it is family; for others, spirituality o Staying open and flexible in your plans for successful RTW 3. RTW is all about relationships and communication Returning to work is a complex process involving education, awareness and attitudes, expectations, agreements and accommodations. There are many key players and communication among them is important to assist in understanding and problemsolving. In short, a lot of what goes into return to work involves relationships. As a stroke survivor, you are at the center of this communication system. Many fears can serve as barriers to effective communication. You may fear disclosing too much and risk losing a job. An employer may fear asking too much and being accused of discrimination. Family members may fear encouraging return to work thinking that the stress will affect your future health. Survey respondents indicated that most often others supported them emotionally rather than in an active, practical way, like providing a ride or helping out at home. Forms of discouragement of RTW were fear based, such as fear of another stroke or other health event. Maintaining supportive relationships with good communication is important in the process of RTW. o Not losing touch with employer contacts and co-workers in both the early and later phases of recovery so that they can provide support and also observe the effort of recovery o Updating your work supervisor once or twice a month on progress and thoughts about return to work o Meeting with your supervisor before returning to work to make job expectations clear and discuss help that you may need o Asking for ongoing communication with your supervisor once back at work for feedback on your performance o Identifying someone you can really talk to or a mentor at work to help manage the interpersonal stresses of RTW o Changing from a fear based point of view to one of striving and effectiveness so that you don t lose sight of the health benefits of being active and engaged in life, including work Page 3

4 4. Fatigue, mental and physical, is often experienced after stroke and should be considered in RTW efforts The impact of fatigue is an underestimated result of stroke. In our survey, 56% of respondent said it limited their ability to RTW, either somewhat or a great deal. It was the second most frequent stroke effect cited as a limitation to RTW, even before thinking, communication and emotional problems. 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 keep up with a work assignment. Survivors as well as family and employers need education regarding this invisible limitation. Flexibility in work scheduling was reported by 45% of the survey respondents as a helpful strategy in RTW. o Including general energy and strength building exercises as part of early recovery practices o Setting up and sticking to a daily schedule that resembles a workday to prepare for actual return to work. o The energy used in getting to and from work; and think about any transportation help you need o Work from home possibilities, if available, prior to return to the work place to reduce the physical demands of getting ready, getting to/from, and managing the physical and social parts of the job o Developing a gradual approach to work re-entry that could include a modified, increasing work schedule from part to full time o Building in set rest breaks during a work day o Accepting the possibility of permanent energy loss as part of stroke deficits that will need to be considered in work life and keeping up with a job. This may mean only working part-time o Getting more help with daily life tasks outside of work (e.g., cooking, cleaning, errands, etc.) to save energy. You may need to accept the fact that you can do it all. 5. Develop phases or steps for gradual RTW Return to work after stroke is a later phase of recovery, after earlier stages such as hospitalization and rehabilitation to recover from problems from the stroke. Timing and coordination among healthcare professionals, employer, and survivor and family is critical to successful RTW. Both survivors and employers need to let go of the belief that the only goal is to return to the pre-stroke job. It can be hard to know when the time is right to try to return to work because each stroke survivor has a unique set of problems, resources, and work tasks. Developing a plan or pathway for return to Page 4

5 employment can help establish an understanding for the process and order of priorities and choices available for return. It can serve as a reality check for you to understand what is needed for successful return. Such planning could also show that return to work is not the best choice, clearing the way to consider other ways to be productive and satisfied with a new life. o Exploring the role of work in life and work/life balance to decide if and how you would return to work o That social re-entry should come before any work re-entry to get comfortable in more public settings again o Different forms of gradual work re-entry, such as volunteer work, work from home, or part-time at the work place o Gathering opinions from your personal and professional support team, especially a vocational counselor when available, about timing of return and special arrangements you need o Talking with your employer about benefits available to you for sick or leave time, gradual work re-entry, and job changes o Figuring out your transportation needs making sure to consider any additional time it may take you to get to and from a job 6. Consider your finances in any effort to RTW Return to work is not only seen by stroke survivors and their families as and important step in their recovery, but it also can be important for financial reasons. 81% of our survey respondents said it was a great deal or somewhat important to RTW to have enough money to live. However, caution needs to be used when returning to work if you are receiving disability benefits. Making a financial plan is an important part of the return to work process. o Obtaining accurate information to better understand your disability benefits and how return to work, even at part-time hours, may reduce and/or stop monthly payments. o How disability benefit programs have very different rules for reducing, pausing, and/or permanently ending the benefits. Earning limitations (meaning the amount of money you are allowed to earn at a job) varies from private long term disability insurance benefits to government benefits such Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). o SSDI has a nine month Trial Work Period. SSI does not have a trial work period and your monthly checks will start reducing once you are paid over $85.00 a month in gross earnings. Go to and download the Page 5

6 Red Book on work incentives or call Social Security at (TTY ) for more information. o Contacting your long-term disability (LTD) insurance carrier if you receive LTD benefits to find out if any paid work will stop the benefits. Once LTD benefits stop because a person has returned to any kind of employment, even part-time, it may not be possible to have these benefits re-started at a later date even if the return to work is unsuccessful. o Developing a financial plan for return to work and be sure to add in any additional transportation and other related costs connected to working. As disability benefits could likely stop, you need to be sure your wages after taxes and work related expenses will be at least the same and hopefully more than your lost disability benefits. 7. Later return to work: six months or more Different challenges face those who are out of work for more than 6 months to a year, especially when they are not returning to a former employer. About 62% of our survey respondents who took 6 months or more to RTW consulted with a vocational rehabilitation counselor. Consider... o Can I do my pre-stroke job? this should be discussed with your physician and family in an direct and honest way. If receiving therapy, you should also discuss this with your therapist. It is extremely helpful to have a copy of your pre-stroke job description (or a written list of the job tasks) when you talk with others about your ability to perform that type of job. Don t forget to include the speed and quality required for performing your pre-stroke job tasks, because these can be important to determine your ability to return to that job. o Looking carefully an honestly at your strengths and weaknesses as they relate to different types of jobs, if you are considering a different job than you had before your stroke. Vocational rehabilitation counseling can be very useful in helping you to answer this question. Where do I look for a job? discuss this with a Vocational Rehabilitation Counselor. A good resource is the book What Color is Your Parachute" (Ten Speed Press; 13th edition, 2012) o Accommodations or job changes which would allow you to do your pre-stroke job or another job. Be aware of your limitations (physical, sensory, cognitive) and use the resources described in this document. o Updating your resume make sure your resume lists your last job and has an active address with a phone number that has voice mail or an answering machine. Your local library will have books showing samples of various resumes. If you have a Vocational Rehabilitation Counselor, have the counselor review your resume. Page 6

7 o A variety of places to gather information and obtain job leads, such as internet sites, job fairs, state and local employment agencies. Networking with others is even more important when returning to work with limitations and after a long absence from the work force. Discuss this with your Vocational Rehabilitation Counselor. o If and how to discuss your stroke in the job application process. There is no right way to handle this question. It is a decision each stroke survivor needs to make on an individual basis. Under the federal American with Disabilities Act, you cannot be asked in a job interview or on an application about your personal health information. If you ask for an accommodation for certain job tasks, the employer can legally ask for the medical reason why such an accommodation is needed and request that you bring in a note from your physician. A Vocational Rehabilitation Counselor can provide guidance on what and when to talk about your stroke when applying for a job. 8. Stroke survivors with unique needs when returning to work Stroke survivors with major language problems (aphasia) and those who had unskilled jobs before their stroke are at extra risk of being unable to return to work. Since most jobs require some level of communication skill, having limited language after stroke can clearly affect the chances of successful return. Stroke survivors with aphasia can not only be fearful of doing well on language based job tasks, but also feel cut off from coworkers due to embarrassment and discomfort when speaking. On our survey, survivors who were working at an unskilled job prior to their stroke were less encouraged by others to return to work, took longer to return, and were less likely to return to their pre-stroke employer. They were also more fearful of being viewed as unable to do their job. o That if you have aphasia or worked at an unskilled job, you will need extra time and resources to look at return to work issues o That you could benefit from vocational rehabilitation counseling to help you honestly assess your options for return to work o Retraining or return to school for vocational redirection. Remember that retraining can be for a specific skill and may not require a lengthy school program. 9. Find, use, create resources, for RTW, especially in the long-term For stroke survivors who do not return to work in the first 6 months after their stroke, locating and using professional resources to get a job is highly recommended. This is especially important if the pre-stroke job is no longer available. Either with a current Page 7

8 employer or a new company, resources can make a difference in how successful a person can be at work Vocational rehabilitation services can be very helpful in returning to work, either at an existing job or new job. These services can include review of work capabilities, figuring out skills that can be used for more than one type of job, vocational counseling, work place evaluations, job placement, and job coaching. Surprisingly, only 24% of the respondents to our survey reported making use of vocational services in efforts to RTW. More can be done to educate stroke survivors to this valuable resource. Consider... o Making use of vocational rehabilitation through state rehabilitation services offices (to to or check the phone directory for your nearest location). Vocational rehabilitation services are provided in all states at no charge to qualified individuals with disabilities. o Contacting the Commission of Rehabilitation Certification at or at to locate a certified rehabilitation counselor (CRC) in your area. o If you are 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. o If you work for a large company, joining or forming an employee resource or support group for individual with disabilities, including stroke, to get help emotionally and for networking within the company Using aides and accommodations for performing work tasks is frequently an essential element for doing well at a job after a stroke. 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 Disability Act) center via the ADA National Network by calling or by going to o An ADA specialist, through the human resources department, if employed at a large corporation Page 8

9 10. 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 understanding, prejudice and even accidental 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 seen as impaired if/when they return. Disability awareness becomes strongest when it is experienced in a personal way. o Maintaining open, ongoing communication with your employer through the course of your recovery so they can get a more direct look at the tasks and effort required to recover o Referring your employer to websites of major stroke organizations, such as the National Stroke Association and the American Stroke Association, for information on stroke that can be quickly and easily understood o Suggesting personal accounts of survival and recovery which can often be very effective in developing a greater understanding of the life of a recovering stroke survivor 11. Balancing work and health after returning to a job after stroke So much effort is put into getting back to work after stroke that little is known about what helps a person stay on a job over time. You may choose or be required to accept a change in work schedule or duties to accommodate your impairments. On our survey, when survivors were asked what was important in keeping a job, factors of independence and confidence in skills were noted as very or somewhat important by over 90% of respondents. Making money was relatively less important for job maintenance and only 54% of respondents felt job maintenance was important to get ahead (i.e., get promotions). Perhaps returning to a productive work life is a big enough goal in and of itself, especially when considering other life responsibilities, including selfcare. The experience of stroke and recovery also could change one s life priorities, making work and earning money less important than other life goals. You may find you are more aware of the health risks related to stress. 53% of our survey respondents who had returned to work worried somewhat to a great deal about getting sick again. o Defining the role work should play in your life after having such a serious health event. What does quality of life mean to you? o How taking care of yourself, reducing health risk factors will be important to any job maintenance Page 9

10 o Your ongoing health care needs in any decision to work either full or part-time o Learning more about stress management as part of your work re-entry plan o Having a discussion with your supervisor and/or your family about your goals for balancing work/life stress o Including time needed for ongoing health care needs in any talks you have with your employer about work scheduling and accommodations 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 10