Recently, NeuroNotes has featured a number of editorials on the problems related to funding for brain injury services. The piece of the iceberg which remains unseen is the true lifetime costs of brain injury. The Department of Defense commissioned a study of lifetime brain injury costs as they realized that brain injury was the signature wound of the Iraq and Afghanistan war. A lifetime cost of $15-20 million was projected as the amount of financial resources needed by a person injured in their twenties. Without adjusting for inflation, the average cost per year for a person in their twenties over a forty year period would $500,000 per year. Where will that kind of money come from?
When I have used that $20 million lifetime cast projection in presentations I have given on long-term needs of people with brain injury, the audience usually is astounded. I encourage them to take a look at their insurance policies and see how much is available through their insurance to pay for the rehabilitation. Most agree quickly that their insurance will only pay for a fraction of the lifetime costs associated with disability for severe brain injury and what is available will be directed for the medical costs of the initial injury.
We routinely see people who have incurred over one million dollars in the first thirty to sixty days post-injury to keep them alive. What resources will fund the rest of their lives?
In an earlier blog, Paul Stone wrote about the Medicaid waiver programs which operate in about half of the states to provide specific services for brain injury services outside of nursing homes and allow for services to be provided in the person’s home and community. The states with these Medicaid waivers are working to avoid institutionalization and to provide some level of continuing care.
After the Medicaid waiver blog, Paul Stone turned his attention to the Medicare 60% rule and an analysis of outcomes for people with disabilities, including brain injury treated in Inpatient Rehabilitation Facilities (IRF’s) versus Skilled Nursing Facilities (SNF’s). The outcomes in the study by Dobson and DaVanzo (2014) speak to lower mortality, fewer re-hospitalizations with fewer emergency room visits for people treated in Inpatient Rehabilitation Facilities. Yet, the issue before Congress was to redirect monies to SNF-based programs. Somehow I cannot follow the logic of that when the data so clearly point to essential differences.
One of the most important issues to consider about brain injury is that it is a lifetime disability. It meets the criteria for a chronic disease as defined by the World Health Organization (WHO) and further defined for relevancy by Brent Masel, MD. Yet, when we look at funding, we only see the tip of the cost iceberg. Ninety percent of the costs of brain injury will occur in the context of living supports and services beyond the end of medical rehabilitation, and that is where the $15-20 million lifetime cost projection comes into play. Where will that money come from?
The problem of living with the disabilities associated with severe brain injury is furthered by people moving through hospital-based services at a faster pace and being returned to their families, homes and communities in the condition that rehabilitation professionals call “sicker and quicker.” If we add that set of issues to the mostly unfunded lifetime costs of brain injury disabilities experience more frequent and costly health and living problems which will further reduce their life expectancy and affect their potential for independence. In essence, the problem is being increased in terms of total cost and personal loss of independence with each new brain injury. Something is radically wrong with the current set of solutions.
The other “costs of brain injury” occur out of sight. Those costs involve the family caregivers, their loss of income when they provide care for their loved ones, the increased expenses they encounter for unfunded care, the significant health and mental problems they face as they become full-time caregivers. And, as they provide for the care of their family member in their homes, they are aging and will reach a point where they can no longer care for their loved one. If their family member was injured in their early twenties, when that person turns 65, what age will their parents be, if they are still alive?
Family caregivers and care they provide is estimated at $375 billion dollars per year (Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving; National Alliance for Caregiving and Evercare. March 2009). These are the “silent costs” of brain injury. Because they are “out of sight and out of mind,” they are not calculated in the healthcare costs of today. I recently discussed the challenges family caregivers face in an interview with Dr. Gordon Atherley of the social media project, Family Caregivers Unite!
I have been working in brain injury rehabilitation for over thirty five years and I have seen the difference that rehabilitation can make for the individual in terms of moving them towards independence, improving functional capacities, eliminating barriers and improving health. I have had the opportunity to develop and operate community-based programs where our Outcome Studies have demonstrated the value of rehabilitation services delivered in the home and community. Our Outcome Studies are supported by the evidence in other long-term studies: extended rehabilitation works to restore and maintain an increased level of independence.
The current focus on cost-control for rehabilitation funded by Medicare and Medicaid flies in the face of common sense, when in the long-term we can save money by preventing people living with a brain injury disability from experiencing high cost medical events. The recent testimony before congress by Susan Connors of the Brain Injury Association of America was an attempt to direct attention to the real problems and potential solution.
Each year the number of people living with brain injury disability grows. With that increase comes an increase in the number of family caregivers. This is a problem that cannot be ignored or simply made to cost less by under-funding. What isn’t paid for today will cost more tomorrow.