Returning to Work After Stroke
For many younger survivors, going back to work is often the measure for recovery. Here's some excellent guidance if you're working toward getting back into the workplace.
For many younger survivors, going back to work is often the measure for recovery. They sometimes rush through rehab so they can jump back into their jobs. However, they may find that they are no longer capable of doing what they did before, despite having completed rehab with flying colors. Even with possible accommodations provided by their employers, working life moves faster and requires more stamina than they have post-stroke.
We interviewed three survivors about their experiences returning to work after stroke. One of those survivors, Steve Park, is a vocational counselor who works with disabled people, and we also got his input as an expert in this area. We also spoke with Paul Wehman, chairman of the physical medicine and rehabilitation department at Virginia Commonwealth University School of Medicine, and physiatrist Richard Kunz, an assistant clinical professor in the same department. Both saw returning to work as a benefit to recovery:
“Work is very therapeutic,” Dr. Wehman said.
That said, Dr. Kunz advised not to rush it.
“Take time to get better,” he said. “The most important thing is to heal. Going back to work and financial pressure have to take a backseat to that. Take the time and make it a rational return to work.”
“Rehabilitation is a process,with individuals having to learn for themselves what their limits are.”
There is no simple answer about when someone is ready to return. Decisions should be made on an individual basis.
“I have patients who have relatively severe functional impairment who go back to work, while other patients with less impairment do not,” Dr. Kunz said. “It depends on the person’s perception of themselves. Actual functional ability is rarely the thing that it boils down to.”
Dr. Paul Wehman
One variable Dr. Wehman mentioned is how much a survivor’s self-image is connected to their work ethic.
“Some individuals see themselves as workers, and the concept that they will never work again is foreign to them,” he said. “It is important for survivors to accept that things have changed. Even when a person appears to have made a full physical recovery, there are changes – stamina, language, sequencing, attention, noise tolerance and memory – that may not be obvious in the rehab environment.
Steve Park remembers that when he first returned to work, he refused to accept that his skill level had changed.
“The denial can go on for years, especially with a big change in vocation. It did for me,” he said. “Rehabilitation is a process, with individuals having to learn for themselves what their limits are.”
The key issue is whether the survivor understands his or her level of disability. Family members are often clearer about this than survivors, especially if they loved their jobs and have a strong desire to get back to work. “I often use a neuropsychologist to help patients develop that insight,” Dr. Kunz said. Without insight, survivors often set themselves up to make mistakes that they don’t recognize but employers do.
“As long as patients understand what their limitations are, they can learn to work around them and develop compensatory strategies,” he said. “We find that employers are open and willing to work with patients as long as they know what they’re getting into.” While physical deficits are challenging, Drs. Wehman and Kunz said those challenges are easier to overcome than cognitive deficits.
Dr. Richard Kunz
“One of the issues with cognitive impairment is that it impacts everything,” Dr. Kunz said. “If you have dense hemiparesis but are cognitively intact, you can still figure out your toileting, your hygiene, your mobility, taking your medications – all things that go on after stroke. But if you are significantly cognitively impaired, all your other problems become exacerbated.” Important issues to consider: Can you learn to use a cane or walker? Are you able to develop hygiene habits and don’t require assistance? Can you maintain your health going forward? “Cognitive issues make it harder to progress across the board,” Dr. Kunz said.
Although employment can be good therapy,the healthcare system is not really focused on getting survivors back to work.
Although employment can be good therapy, the healthcare system is not really focused on getting survivors back to work. There are many challenges a patient and his or her support system will have to deal with themselves. This includes issues like how to disclose a disability? What accommodations are necessary? Will I be eligible for benefits if I start working and it doesn’t work out?
“These are all reasonable questions that our service delivery system does not answer in a nice, seamless way,” Dr. Wehman said. “That is not an excuse, it’s just what happens.” (See “Ticket to Work & Work Incentives,” below)
Dr. Wehman stresses the importance of the employee realizing it is up to him or her to make things work. That includes asking for help whenever necessary.
Both professors pointed out that there’s a lot of attention paid to survivors during the acute treatment and rehab and recovery phases of stroke. “Medically, we’re pretty strong in knowing how to help people there,” Dr. Wehman said. “And from a vocational rehab standpoint, we are pretty strong, but we need the patient to advocate for themselves, to ask for specialized supportive employment or support services as soon as they feel they are ready, because if they don’t, nobody is going to go knocking on their door.” Every state has a vocational rehab program that can help with this phase of recovery. In addition, the Employment Network providers in the Ticket to Work program will collaborate with survivors on developing plans and strategies for returning to employment.
Dr. Wehman also noted that some survivors worry about jeopardizing their disability payments by going back to work. Part of the fear is what happens if they can’t remain employed. However with Social Security Disability Income (SSDI) and Supplemental Security Income (SSI), there is a trial work period. (See “Ticket to Work & Work Incentives,” below)
“The Social Security Administration has a giant work incentive program to encourage people to work and keep their benefits to a certain level of substantial gainful activity,” Dr. Wehman said. “Anybody who has questions about losing their benefits would do well to check with their state’s vocational rehab program and have a benefits counseling evaluation so that they would know what their rights are. Most of the people I work with don’t know the rules.”
As for reasonable accommodation under the Americans with Disabilities Act, the law requires that employees have an opportunity to have a reasonable accommodation; those accommodations are often paid for by public funds through vocational rehab agencies. According to the Job Accommodation Network, half of all accommodations cost nothing and many others cost less than $100.
“With most employers there is not a problem when the accommodation is inexpensive — say, a piece of software, a change in desk height or work schedule,” Dr. Wehman said. “But the employer needs to know upfront what they are dealing with. They don’t like surprises.”
Vocational retraining or additional education may be necessary, as it was with Steve.
Since we published Steve’s story in 2004, there is a new opportunity in education called Massively Open Online Courses (MOOC). Many MOOCs are offered by large and prestigious universities; they are exactly the same courses paying students take, but the MOOC versions are typically free, though no credit is awarded.
“I think distance education and online training and virtual education can be a valuable source of learning because it allows people to learn at their own pace,” Dr. Wehman said. “However, I honestly believe that having specialized help, accommodation and at least temporary support relearning the job at the job site is more valuable in most cases.”
Steve said he believes most employers are aware about rules preventing discrimination based on disabilities. However, the ADA does not require that someone be hired.
“There are myths about employing people with disabilities,” Steve said, “like the employer’s insurance rates will increase, or they will be absent more or accommodation will be prohibitively expensive. But I am noticing the employment world is getting better for people with disabilities as the disabilities in the workplace are brought out in the open, but sadly, discrimination still exists. The stroke survivor has to be willing to be a self-advocate.”
Tips for Returning to Work
Steve Park survived a stroke at age 31. Unable to return to his career as a refrigeration technician, he went to school, earned a master’s degree and has worked as a vocational rehab counselor ever since. We told that part of Steve’s story in “Tough Work” in our July/August 2004 issue. He currently works in the Supported Employment Division for LifePath Systems, a nonprofit agency located in a Dallas suburb. He outlined these tips for survivors wanting to go back to work.
- Contact the Vocational Rehabilitation agency for your state as soon as possible during or after rehabilitation for a stroke that affects your ability to work, even if you are not sure about eligibility.
- If you are receiving Social Security benefits, find out about the Ticket to Work program.
- If you are not sure about returning to work, try a volunteer job. By volunteering, you will increase your endurance, discover personal strengths/interests, help the community and it looks great on a resume.
- Enroll in a junior, community or a county college and study an area of interest for you. Science, writing, literature, math, history, physics, philosophy, electronics, welding, pottery, drama and a host of other learning opportunities are open at any age. School can be inexpensive rehabilitation.
- Expect to be treated just like people who don’t have disabilities.
SSDI & SSI
Social Security Disability Insurance (SSDI) is a program of the Social Security Administration that pays benefits to disabled people and certain family members if the disabled person is “insured,” meaning that he or she has worked long enough and paid Social Security taxes. (For more information, visit ssa.gov/disability)
Supplemental Security Income (SSI) is a federal income supplement program funded by general tax revenues (not Social Security taxes). It is designed to help aged, blind and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing and shelter. (For more information, visit ssa.gov/ssi)
Ticket To Work Program
Social Security’s Ticket to Work program supports career development for people with disabilities who want to work. SSDI beneficiaries ages 18 through 64 qualify. The Ticket program can connect you with a variety of free employment support services.
The Ticket program and Work Incentives allow you to keep your benefits while you explore employment, receive vocational rehabilitation or gain work experience. Cash benefits often continue throughout your transition to work and are eliminated only when you maintain a level of earnings, known as “Substantial Gainful Activity.”
How It Works
Everyone who receives SSDI or SSI is eligible to participate in the Ticket to Work program. To participate, contact an Employment Networks (EN) provider in your area to see if the services they offer are right for you. These providers offer career counseling, vocational rehabilitation as well as job placement and training. You may also receive services from your state vocational rehabilitation agency and then receive ongoing services from an EN.
The Work Incentives program makes it possible for you to explore work while still receiving healthcare and cash benefits. This program allows you to keep your Medicaid/Medicare benefits during your transition period.
There are other Work Incentives programs available. SSDI recipients can enroll in the Trial Work Period (TWP) program. The TWP allows you to test your ability to work for at least nine months. During that time, you receive full SSDI benefits no matter how much you earn as long as your work activity is reported and your disability continues.
A program called Expedited Reinstatement (EXR) is available to both SSDI and SSI recipients. If your benefits stopped because of your earnings level but you had to stop working because of your stroke, you can request to have your benefits reinstated without having to complete a new application. While Social Security determines your benefits reinstatement, you are eligible to receive temporary benefits for up to six months.
Another program, Protection from Medical Continuing Disability Reviews, prevents you from having to undergo a medical continuing disability review while you are participating in the Ticket to Work program.
Ticket To Work & Work Incentives
Help Line 866-968-7842
Profile: Survivor Larisa Diephuis
Larisa with her son Ian
Larisa Diephuis loved her job as a program manager for a national nonprofit organization. Managing two programs, in New Orleans and Baton Rouge, La., she had a full-time staff of six and oversaw up to 30 part-time staffers.
One day in November 2009, she had “a killer headache.” She went to the hospital, where they discovered a hemorrhage in her cerebellum.
“It was due to an arteriovenous malformation, but it was so small they couldn’t find it right away,” Larisa said.
She went out on disability for three months, at full salary, and her job was held open for her. During those three months, doctors located the AVM. She returned to work, within six weeks, then went to Boston for surgery to remove the tangle of blood vessels. She planned to be out for a month at the most, but there were complications. One month turned into three. And when she returned to work, she was no longer the 50-hour-a-week multitasker she had been.
“I wanted to go back to work exactly how I was before, but I wasn’t the same,” Larisa said.
Typing was a struggle, as was reading documents.
“Things had changed while I was gone, and a lot of reading was required for me to catch up and my processing speed was so much slower,” she said. “My information processing and attention were both affected.”
She also lacked the stamina to work 10-hour days.
Though many of her co-workers were sympathetic, a few – including her supervisor – seemed to view her time away as time off and couldn’t understand why she wasn’t rested and ready to go. She had changed, but the only place she could really assess how she had changed was at work.
“For instance, it’s hard for me to fully participate in meetings because there’s so much going on,” she said. “Multi-tasking is a huge issue for me. And noise. I deal best with people one on one, so I can’t lead meetings anymore. I really wanted to go back to work, but it took a while to figure out what I could do. My job had to change. People were frustrated that they had held my job for me. It was just difficult all around.”
Fortunately, several people, including the head of human resources, wanted to find Larisa another role because she had been successful with the company for over seven years. They didn’t so much find a role as create one: Today she does initial phone interviews of potential new hires all over the country. She works 30 hours a week from home.
“When I’m interviewing new people, I can talk about why our company is so great,” she said. “I can tell them that we really care about our employees.”
Profile: Survivor Thomas Scott
Thomas Scott of Allen, Texas, had a stroke in 1997 at age 43. Although it left him with aphasia and right-side weakness, he returned to his job in building maintenance for a large property company about a month after his stroke. No longer able to climb ladders, he was switched from light technician to general plumber and told that whatever accommodation he needed would be made.
“One accommodation my managers made was allowing me to rest when I needed it,” he said. In addition, his co-workers helped with his duties.
Occasionally he would forget things, like where he left his tools. “And sometimes I would not complete the assignment,” he said. Rather than being reprimanded, “I was told to slow down and pay attention to what I was doing.”
Over the next 15 years, he worked for two supervising engineers.
“The first was more tolerant of my disability than the second,” he said. “But I worked for him for eight years, so I guess he didn’t have that much of a problem with how I worked.”
In March 2012, due to a downturn in the economy, Thomas was laid off and is now on disability while looking for another job.