Living with Long-Term Effects of Brain Injury, Medicaid Waivers are an Answer
Recovery from a moderate to severe traumatic brain injury can be a long and difficult path, and often help is needed to get the level of rehabilitation required for a positive long-term outcome. Of course some may be lucky enough to avoid the incapacitating effects of a more severe brain injury. But, for others lack of access to high quality treatment can mean living with significant psychological, cognitive, behavioral, and physical disabilities for the rest of their life.
It is estimated that between 5% and 15% of people with a TBI develop these long-lasting and debilitating symptoms that impair day-to-day life. Some of the debilitating symptoms are more physical, such as chronic headaches and vision problems. On top of that, there are also psychological and behavioral issues that can develop and completely impede the ability to live an independent or safe lifestyle.
Anxiety, depression, difficulty controlling anger or emotions, and other chronic mental health problems have been associated with traumatic brain injuries, and when left untreated these symptoms are absolutely ruinous; Individuals suffering with these issues may even find themselves living on the street and in a high situation of risk.
With proper rehabilitation these debilitating problems can be managed and these negative outcomes can often be avoided, allowing individuals with long-term TBI-related problems symptoms to live productive and independent lives. However comprehensive treatment and rehabilitation can be surprisingly difficult to access especially for those who rely on Medicaid to receive treatment.
Anne Leopold, Disability Research Analyst for the Disability Services Center, highlighted the problems of access to treatment for Medicaid recipients in a study presented at the 2013 Southwest Disability Conference. In the presentation Leopold showed that up to 79% of Medicaid recipients had difficulty receiving at least one service in their recovery. For the most part (81%) difficulty attaining these services also impacted daily routines and physical or emotional health.
Specifically Leopold saw that as many as half of the respondents had difficulty receiving personal care services, as well as with attaining durable medical equipment, physical therapy, cognitive support services, psychological services, and occupational therapy.
Leopold also cited that 40% of respondents with TBI experienced at least one unmet need a year after their injury. Many experienced difficulties with memory and problem solving (27%) while others had issues managing stress or dealing with emotional upsets (16%). Another 13% reported problems controlling their anger.
On paper these issues represent barriers to independence and unmet needs for people living with traumatic brain injury disability, but when viewed in the broader context of the number of people living with a brain injury, it is clear they can be downright cataclysmic. For example current estimates of the rate of TBI in the chronically mentally ill sits at around 25%, and other studies have indicated the rates of TBI among the homeless between 50% and 80%, and prison populations are estimated to have rates between 70% and 75%.
We see the devastating effects of brain injury disability among individuals who have been marginalized or pushed away from society. It is important to note many of these individuals experienced brain injuries before becoming homeless or incarcerated. Instead their life situations are the result of unaddressed TBI symptoms and disability. In fact the path from relatively “normal” lives to destitution is so common that researchers have coined the term “disability-related poverty” to define the negative social effects of traumatic brain injuries and otherwise catastrophic disability.
Many social researchers also cite the high rate of TBI among prison populations as the toll of unmet rehabilitation needs. Difficulties controlling emotions, specifically inability to control behavior, make it significantly more likely a TBI sufferer may commit crimes leading them to incarceration. Unfortunately many brain injury patients on Medicaid have difficulty accessing the behavioral therapy that can help with handling these issues and preventing incarcerations.
In response to the growing awareness of the long-term disabilities associated with traumatic brain injuries and the gap in access to coverage over 25 states have established Medicaid-waiver programs of varying levels. Many of these states provide for all appropriate rehabilitation, including out-of-state services as needed, while other states use community-based programs or have expanded the existing in-state programs.
These type of waiver programs provide access to the high level comprehensive treatment and rehabilitation that TBI patients deserve but often do not have access to.
Rehabilitation can be difficult in many of these situations. It can be challenging to provide the appropriate care for those who have long histories of violent and aggressive behavior or severe cognitive disabilities related to brain injury. Often this can lead to already struggling individuals having several failed rehabilitation placements and in crisis situations and finding themselves out of options.
Thankfully many Medicaid-waiver programs cover services at the program offered by The Neurologic Rehabilitation Institute at Brookhaven (NRI). These programs specifically allow for high quality and thorough treatment for individuals who otherwise are likely to experience significant adversity finding proper treatment and are designed to promote lasting positive outcomes in future community living.
These types of programs are absolutely essential to avoid the long term problems associated with severe brain injury disability. With increased access to appropriate rehabilitation we are not only able to help treat loved ones and those who have slipped through the cracks; Medicaid programs are also crucial in fighting social issues affecting people living with a brain injury such as homelessness and the high rates of imprisonment across the country.