It happens in an instant. It is unpredictable and yet the results are devastating. A “catastrophic injury” is a legal term that essentially means that an injury is so severe that its effects are permanent and have loss of function. These injuries are most often associated with spinal cord injuries and traumatic brain injuries. The source of these injuries may be anything from falls, motor vehicle accidents, sports-related injuries, assaults, etc.
The challenges for professional case managers working with clients with catastrophic injuries are many. These injuries will typically require some level of care and coordination for the rest of their lives. According to The Miami Project to Cure Paralysis and The Buoniconti Fund (2018), there are 17,730 new spinal cord injuries each year in the United States and the average age at the time of injury is 43 years. The National Spinal Cord Injury Statistical Center (2013) estimates that the average life expectancy may be anywhere from 8 to 35 years depending on the location of the injury and a variety of other factors including social determinants of health.
Case managers have an opportunity to develop a long-term relationship with these clients who require lifelong care. In addition to coordinating the care for their injury, case managers will need to coordinate care for any comorbidities and/or other issues related to aging. Managing financial resources to pay for needed care presents a challenge for case managers.
According to information found at the Christopher & Dana Reeve Foundation (2014), the estimated lifetime cost of care for an individual with a spinal cord injury could range from $1.2 million to $5.0 million depending on the age of onset and location of the injury.
The unfortunate reality of case management for catastrophic cases is that decisions regarding care are likely driven more by financial resources and less by the needs of the client. For example, a 40-year-old man is injured in a motor vehicle accident and sustains a spinal cord injury. His injury is at the cervical level and is a complete injury with paralysis from the shoulders down. He is a high school graduate, employed at the time of the accident, and has employee-sponsored health care insurance. According to the National Spinal Cord Injury Statistical Center (2013), his average life span expectancy is 15 years and the estimated lifetime cost of care according to the Christopher & Dana Reeve Foundation (2014) could be as much as $5.0 million.
The employer-sponsored health insurance plan may cover much of the initial cost of care; however, the client will not likely be able to return to their job and those insurance benefits will end after 90 days. Even if the family can afford to pay the monthly COBRA premium, this benefit may only last for a limited amount of time, depending on their plan. Eventually, in this example, the family will likely spend down whatever resources they have, followed by a reliance on Medicare/Medicaid benefits.
There are some scenarios where resources are available to care for clients, such as workers' compensation benefits, third party lawsuits, and, in Michigan, someone injured in an automobile accident may have lifetime benefits in certain circumstances through their auto insurance benefits.
The challenge for the professional case manager is not only understanding the care needs of their client but also understanding the financial resources to determine the best course of action.
Prioritizing Functional Outcomes
If the client has limited financial resources and the need for years of care, professional case managers are challenged with prioritizing clinical decisions. There may be many competing opinions regarding course of treatment and care provided. For the professional case manager, it is important to know who the decision maker(s) is and which stakeholders have influence on the decision maker(s). Those stakeholders may include:
- The client/person served;
- Their family—spouse/parents/siblings/children, etc.;
- Medical team—physiatrist/neurologist/primary care physician, etc.;
- Therapy team—occupational therapist/physical therapist/psychologist/speech–language therapist; and
- Legal team—attorney/guardian/conservator.
Long before the Live–Work–Play paradigm was developed to describe real estate developments, it was a concept used in rehabilitation to describe the three pillars for how people live their lives. For the professional case manager, these are the three main pillars, in order, for how to prioritize treatment and care decisions.
The first, and probably the most important, priority must be where the client will live. The environment must be accessible to meet their needs and they must have the necessary equipment, facilities, and assistance to be safe and remain healthy. Input from all stakeholders along with an understanding of financial resources will be critical. This will be the area that utilizes the largest portion of those resources.
There are numerous options to consider: home, supported living environments, skilled nursing homes, etc. The professional case manager is well versed in understanding the needs of their clients. In addition to selecting the most appropriate living environment, the case manager must educate the family and other stakeholders on the immediate- and long-term care needs. If the client requires attendant care support, the case manager will play a vital role in selecting the most appropriate and cost-effective service provider. There must be consideration for proximity to community resources including transportation options.
Once a decision has been made regarding where the client will live, the second pillar that should be considered is work. An early mentor of mine would often say, “Everyone needs a reason to get up and put their shoes on.”
Up to 85% of individuals who sustain a spinal cord injury are either employed or studying at the time of their accident. Between 13% and 69% return to work/study postinjury (Murphy & Athanasou, 1993). It is not enough for a client to just have a safe place to live and competent caregivers; the client must have a sense of purpose. Without it, there is a significant risk of depression. Depression symptoms interfere with the ability of individuals to participate in activities and decrease life satisfaction. An estimated 20%–30% of people with spinal cord injury show clinically significant signs of depression (SCI-INFO-PAGES, n.d.). The suicide rate among people with spinal cord injuries is about five times higher than the population at large (Anderson et al., 2007).
The professional case manager should work with the client and the external stakeholders to identify and make arrangements for routine productive activity. This may include vocational rehabilitation, volunteer opportunities, school, etc. Limited financial resources may dictate opportunity; however, most larger communities will have low-cost or even no-cost options. This should also factor into the first pillar of where the client will live.
According to the website Spinalcord.com (2020), staying active following a spinal cord injury is important not only to the client's physical health but also to their mental and emotional well-being. The client's ability and willingness to participate in leisure and recreational activities are likely to be very different from those prior to their injury. The role of the professional case manager should be to encourage their client to stay active following their injury and to assist with identifying those community resources available. Again, financial resources may dictate availability, but larger communities will likely offer low-cost or even free adapted activities to meet the needs of the client. This is another factor to consider when looking at housing options.
The three pillars, Live–Work–Play, do not function independent of each other. Decisions regarding where a client lives, where and how they work, and play are made with an eye to all three pillars. On cases such as these, the professional case manager has the opportunity and unique perspective to guide decision makers on the development of long-term planning while considering these three pillars.
Balancing the needs of the client and the financial/community resources available is challenging. Professional case managers are uniquely qualified to meet the challenge, working for the best possible outcomes for their clients.
Anderson C. J., Vogel L. C., Chlan K. M., Betz R. R., McDonald C. M. (2007). Depression in adults who sustained spinal cord injuries as children or adolescents. Journal of Spinal Cord Medicine, 30(1), S76–S82. https://doi.org/10.1080/10790268.2007.11754609
Murphy G., Athanasou J. (1993). Employment following spinal cord injury: An Australian perspective. Proceedings of the National Rehabilitation Conference, Commonwealth Rehabilitation Service, Sydney, Australia.
National Spinal Cord Injury Statistical Center. (2013). Life expectancy calculator. Retrieved December 15, 2020, from https://www.nscisc.uab.edu/Public_Pages/LifeExp
SCI-INFO-PAGES. (n.d.). Spinal cord injury facts & statistics. Retrieved December 15, 2020, from https://www.sci-info-pages.com/spinal-cord-injury-facts-and-statistics
Spinalcord.com. (2020). Staying active after an SCI: The 10 best sports to play. Retrieved December 15, 2020, from https://www.spinalcord.com/blog/staying-active-after-an-sci-the-10-best-sports-to-play
The Miami Project to Cure Paralysis and The Buoniconti Fund. (2018). Spinal cord injury statistics. Retrieved December 15, 2020, from https://www.themiamiproject.org