As a case manager, I have worked with several people who sustained catastrophic injuries. My role was to help them work with  them to get them through the system, help them access the needed resources, and close the case. In a worker’s comp case, I would work the case till the patient reaches Maximum Medical Improvement (MMI). Once reached, the treating physician would give an impairment rating to decide on a settlement. Once this happened, I would close the case and wish the patient and family luck. I thought of them over time and wondered how they were doing living their new normal. Until I met Troy, I did not fully realize the life-long impact of a catastrophic injury has on both the patient and their families..

Let me Explain

For those of you who have read my Blog Posts, I introduced Troy to you on September 20, 2021. Troy is a 50-year-old man who sustained a spinal cord injury in 2020 while he lived in North Dakota. He made a remarkable recovery. He came off the ventilator in record time and had his feeding tube removed, as he was taught how to feed himself with limited use of his hands without complications. He was able to talk and share his wishes, and he looks forward to a time when he can live his life again as he wishes.

Unfortunately, due to COVID, he did not have access to a coordinated rehabilitation program at the time. The hospital plan after 7 months was to send him to a nursing home as he was medically stable and did not require hospitalization. The patient refused this transfer as he knew he would die if he went to the nursing home. He talked to his family, who lived in Florida, and they agreed to bring him home and care for him. He gave the case manager his debit card so she could arrange a transfer home. He was put on a commercial plane and flew home alone from North Dakota to Jacksonville, FL, with a connection in Dallas. The airline personally took him from one gate to the other. He landed in Jacksonville, FL, where his family met him hours later.

It was at this time I became involved in his life.

Once home, he lived with his mother in North Florida. His discharge plan after 7 months in a hospital was a few prescriptions and a recommendation to follow up with his primary care doctor. His sister left her job and traveled 2 hours round trip to bathe him, feed him, and do wound care for the Stage Four decubitus ulcers he acquired in the hospital. After a few weeks, his sister asked him if he wanted to move to her home as it would be easier for her. He agreed, and he was moved.

In talking to my patient about his benefits,  I learned he was on Social Security Disability and was enrolled in Florida Medicaid. I knew he could get on a program called Long Term Florida Medicaid that would pay a small amount to his sister for caring for him and providing equipment and other supplies he would need. He agreed, and I started the application. It did take some time, but with perseverance, he was approved. He was also enrolled in the Brain and Spinal Cord Injury Program.

Overall, he did well, but he did have some issues that caused visits to the Emergency Department for constipation, frequent urinary tract infections, and non-healing decubitus ulcers. He did have a case manager through the Medicaid long-term managed care company, but no home care services were available in his rural area.

To be a better caregiver, his sister turned to YouTube to learn how to care for him. She learned how to do a bowel program, which has allowed Troy to be on a more consistent elimination routine. She learned to care for the suprapubic tube, so urinary tract infections became less frequent. She also learned how to do wound care to heal his decubitus ulcers. I knew he needed rehab and was able to get him an appointment with a large rehabilitation center in North Florida. Due to the ulcers, he could not be admitted. With his sister’s new routine, within a few months, the wounds were healed, and he was admitted to the rehabilitation center for 2 weeks. The rehab program gave him a taste of what progress a rehab could make. Unfortunately, the insurance company only approved the inpatient program for two weeks.  This time frame did not allow him to take advantage of the full impact of therapy. Once discharged, he was supposed to go to rehab, but transportation could not take him, and there were no Medicaid home care providers in the area, so his sister did the best she could. His case manager told him to hang in there till he went on Medicare and that things would improve.

We applied for many resources he needed so his caregiver could care for him properly. Things like suppositories, a bed, and a Hoyer Lift. Unfortunately, they were denied as his Medicaid insurer did not cover them or were not on the formulary. I was able to tap into community resources and get many of these things donated or funded. It was hard as everything seemed to be a fight. But he persevered as he learned the limits of our healthcare system. Life continued. Eventually, he was eligible for Medicare, which resulted in helping him find more services. Home care was put into place, and he could transfer to a primary care doctor who made home care visits. This allowed him to be seen in his home, which was huge for him as the transportation services in his area were abysmal. It also gave him another shot at rehabilitation at an inpatient center.

The patient, anxious to move on with his life, called the State’s Vocational Rehab office to request help. A Vocational Counselor came out to see him, did testing, and felt he was employable. The patient was told by several people he would lose his benefits if he went back to work. He was cautious and worried about this, so he did not pursue the opportunities presented by Vocational Rehab. As I mentioned, transportation was a huge issue as it was unreliable. In addition, despite what he was told by his Medicaid Case Manager, Medicaid Transportation would only take him to medical appointments, but nothing social like going to a park, a flea market, or a store. As a result, he spends most of his time in his room in the trailer, where he lives a very secluded life. As Troy and his family do not have the funds to get a modified vehicle, he makes the most of his time in support groups for Spinal Cord Patients and talking to friends. He has helped many people in these groups from his experience, which made him feel good and realize how challenging the system is.

What I learned:

So, almost three years later, Troy is living his ‘new normal.’ It is not easy, but he has a great attitude and takes life in stride. It is hard for him as he is an outgoing person who knows there is more to life, and he is determined to do more. As his nurse advocate, I encourage and work with him to continue to search for resources to help him move forward. He is making plans, and I support his ideas.

I also recognize that the healthcare system does not empower people but keeps them down. It is up to the patient, the family, and other supporters to help each person meet their goals and needs. I know Troy is not the only person experiencing the system’s limitations. Thousands of people could do more for themselves, but doing so might take away their benefits. We as a country need to do better to empower people if we want to control escalating costs, mitigate disabilities, and focus on abilities.

I now realize there is no set timeline for my work as a nurse case manager/nurse advocate; it does not end when an insurance company says you are past a point for rehabiation, benefits or other needed services.  People with catastrophic injuries or chronic medical or behavioral health issues have long-term goals and issues that require resources of all kinds FOREVER. They need our help finding those resources and fighting a system that has a profit motive vs. a system to help people maximize their situations.

I know I am not done advocating for Troy. His motivation drives me to help him get to the next level.