Getting involved: Work

Posted by Nurse Linda in Life After Paralysis on June 13, 2019 # Mobility

After sustaining a spinal cord injury, about 58.9% of individuals return to work. That is just a bit more than half. According to the Spinal Cord Injury Facts and Information Page, this includes people aged 16-59. It is great that they consider teen workers but for those over 60, data are not reported. Some people feel quite daunted about the return to work, after all, there is a lot of adjustment after a spinal cord injury. Others are eager to return as work is a normalizing activity.

People generally like to work. Sometimes, they might not like their individual job, but work itself provides a sense of accomplishment. It leads to productivity which can create a feeling of satisfaction for a job well done. Most individuals work in a field that they have chosen and grow within that occupation.

After a spinal cord injury, most people who choose to return to work will return to their same job. Some will not be able to have the exact position because the physical requirements may not be congruent with their physical abilities. Most of the time, people will be able to find a position in the same field but in a different type of work. Instead of farming, they might become a farm manager. Instead of driving a truck, they might become a dispatcher. Nurses who have a spinal cord injury might take a position as a case manager. Almost always you can find something that fits within your chosen career.

Help is available to assist you. Vocational counseling is available in every state. Voc counseling or Voc Rehab as it is usually called, is federally mandated but managed by each state. The processes vary in each state, but the overall goal is the same: getting you back to work. The VA has a Voc Rehab service as well.

When you are in the rehabilitation hospital, ask about vocational services. If you are already out of the hospital, call your state Vocational Services office for an application. You might not be ready to head back to work at the present time, but there usually is a long wait list so getting your name on the list is important. By the time you are called, you probably will be ready to hear about services or to take part at that time.

Voc Rehab’s goal is to get people back to work. This includes a wide range of services such as completing a resume, completing applications on paper and on the computer, helping with interview tips, talking with employers about your needs, getting your house prepared so you can physically get to work, and finding a ride service if necessary. Even more importantly, they can help you find a job that interests you as well as assist you with counseling for mental health and substance abuse. If they do not provide the service, they will assist in you in finding people who do.

There are some things to think about when returning to work. The thought of the many perceived obstacles for return to work can be overwhelming. Some people just want to stay home and not let others see them. This issue can lead to depression. It is a growth process for some to become comfortable in their own bodies. Counseling can help you pass this challenge over time. You do not have to conquer the whole process in a day. Take the time to focus on yourself so you will be successful in your return to work. Some people want to return to the workplace right away. That provides them with normalcy in their life. It does not mean you have to as well. Deciding when to return to work is determined by when you are ready.

In preparing for work think about the work surroundings, even if you do not yet have a particular place of employment. You might need to catheterize during the workday. That means you will need to have enough supplies for a day, and a spare. Most people will carry their catheterization supplies in a bag on the back of their chair, under the chair in a bag attached to the footrests, or in a side bag attached to the armrest. You might have a different idea that will work for you. Pick a place to keep your supplies where you can get them.

Next, think about how catheterization will be accomplished. If you are able to but do not choose to catheterize yourself, think about your independence. Not catheterizing yourself leads to a lack of independence at work, home or in outside activities.

Plan how you will dispose of your catheterization supplies. You may need to empty the collection bag before placing in the waste receptacle. Some organizations will not allow urine in the wastebasket, so you will need to drain your bag into the toilet before disposal. Your coworkers generally will not take to finding a bag of urine sitting by the toilet waiting for pick up. If you learn to transfer onto the toilet for catheterization, you can drain urine right into the bowl.

If you require assistance for catheterization, imagine how you will deal with that. Talk with your healthcare professional about options to modify your equipment to accommodate the workday. Some people work abbreviated days or work from home where help is available. There are those who have assistants with them at work for personal care and those who have someone come in at lunchtime for the catheterization and then leave. These can be practical but often expensive options.

Bowel programs can take time. Some people who work have a late start time or perform their bowel program in the evening. If you have been on an A.M. bowel program, you can switch to an evening program by doing the bowel program with digital stimulation in the evening at a consistent time daily until results start to occur at the new time. Then you can switch to every other day. You will want to convert your bowel program before starting to work to avoid accidents during the workday. Or just start your bowel program in the evening at the rehab hospital if you think you might return to work.

About accidents, yes, a urine leakage or bowel accident is possible at work even with the best of intentions. The flu hits, external catheters explode, nerves can rattle the bowels, even consuming a rich meal with a customer. Keep an extra set of clothes on hand for emergencies. If you can change your clothes independently in the bathroom, go for it. If not, you might need someone on call for emergency accidents. These emergencies should be none to few with the careful maintenance of your bladder and bowel program.

The other big issue for self-care at work is skincare. Hopefully, you have built up your skin tolerance before going to work so you can be in your chair for a full workday. This does not mean you can give up your pressure releases. They must be done regardless of the surface on which you sit. The office is a great place for cues for pressure releases both manually or through use of your tilt feature on your chair. Signals can be when the phone rings, when the elevator stops at your floor, after typing a paragraph or two or so many columns of data entry. Once you look or listen, you will be surprised at the number of every 10-minute cues to do pressure releases within the work environment.

Consider the temperature of the area. Workspace is typically climate controlled for men in heavy suits. The air conditioning is turned up to the maximum. Other places will want to conserve resources and keep the workspace just a tad too warm. Individuals with spinal cord injury, especially at higher levels, can have difficulty controlling their body temperature. If the work area is too hot or more likely too cold, your body can be affected. Recent studies indicate more productivity from all workers when the temperature is kept in the medium range. This just happens to be better for those living with a spinal cord injury as well.

Cafeterias are notoriously inconvenient for people with mobility issues. Looking over the counter to see the food might not be possible. Carrying your tray while using mobility devices can be a challenge. Sometimes, the tray can be placed on your lap, however, if the food it hot, you will need a wooden cutting board beneath your tray to carry your own food. These do not conduct heat, so your legs will not get burned. Larger facilities will have personnel to assist you to your table. Tables generally do not accommodate wheelchairs to go under them, but risers can be used to elevate the table to a height for you but not too high for others.

When you get that job, take a careful look at the environment. Look at the doorways, hallways and office areas. See if you and your chair will be able to maneuver. Workplaces are cut to the bone and don’t always allow for ‘non-revenue generating space’. Those are places like hallways, restrooms, elevators, and entryways where business is not conducted. Make sure you fit, can use modified equipment or that the structure can be modified.

Don’t let physical constraints of the building or office stop you from taking that job. Public buildings must be ADA compliant which will accommodate your needs. If the building is not, you will need to mention this to your employer who will need to modify the space. This is not your issue but a law. It is always surprising when a workplace puts in an adaption, how many other people take advantage of it and are happy to have it for their own needs.

Once you have that job and become accustomed to it, you will find that same purpose of self-worth that you had before. Just remember, you do not have to go through the job hunt and accommodations alone. There are people from your rehab facility, Voc Rehab and the VA that are there to help you. They can talk with the employer about accommodations that will take some of this challenge off you. In getting the job and doing it well, you are advocating for others by paving the way and as a role model.

Pediatric Considerations: Teens might be headed to work with part-time jobs. Look for opportunities that match your teen’s abilities. For teens and younger children, school is their workplace. Many of the same issues above should be discussed prior to return to school. Needs and adaptions are handled through a process called an IEP (Individual Education Plan). Be sure to request an IEP with the school principal.

The school nurse can be an advocate for your child. The nurse will have basic knowledge of your child’s diagnosis and therefore, their needs. Individual healthcare concerns or techniques such as catheterization, medications and skincare should be provided to the nurse, so they can set up a plan to accommodate those issues in a place of privacy. The more information you can provide to the nurse that is unique to your child will help ensure success as they transition back to school.

--Nurse Linda

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.