For About and By Caregivers
Spinal Cord Injury


By Marian M. Inguanzo, MSW, ACSW and
Mitchell A. Kaplan PhD, CPSP

As the Baby Boomer generation continues to age, many are learning that the simple everyday activities they once took for granted, such as getting into their own bathrooms, have become more challenging now that they have a mobility impairment that limits their ability to move about their home without assistance. According to national statistics from federally funded studies, there are an estimated 54 million Americans living with physical and mental disabilities in the United States today. This number is expected to increase to 70 million by the year 2030 as aging Baby Boomers enter their senior years and begin to experience increasing disabilities that may require them to leave their homes and seek alternative living arrangements, such as a retirement community, assisted living facility or a nursing home. In a public statement last summer, James E. Williams Jr., president and chief executive officer of the Easter Seals Society, called for action to create more accessible public living facilities for older individuals with disabilities.

 As increasing numbers of American adults age, more and more of them want to remain independent at home for as long as possible rather than be forced into a nursing home due to the acquisition of a physical impairment. Data from a recent AARP survey found that 84 percent of the organizationís membership reported that they wished to remain in their current residence for as long as they could despite the fact that in 87 percent of the cases their current homes could no longer support their changing accessibility needs.This year marks the 15th anniversary of the Americans with Disabilities Act, a major piece of civil rights legislation that provides for greater social and economic participation of individuals with disabilities in every facet of American life through the implementation of improved public accessibility rights to employment, housing, public facilities and education. The act acknowledges the basic right of all disabled individuals, no matter what their age or impairment, to become fully participating members of our society through reasonable accommodation that limits or removes physical, social, and economic barriers that impede this participation in the institutions and activities of daily life that other Americans without disabilities take part in so freely. Since many American construction companies remain resistive to building new housing facilities that are completely disability friendly in terms of their accessibility, it is up to us as aging individuals with disabilities to band together to encourage builders to create more accessible housing for those of us who need it so that we can remain independent as we age in place. 

Each year as many as 10 to 12 thousand Americans are involved in motor vehicle accidents, slip and fall traumas or violent criminal acts such as a shooting incident that can potentially result in severe life changing physical injuries to the spinal cord. The American Spinal Cord Injury Association defines spinal cord injury as any traumatic damage to the spine that results in loss of sensory or motor function in the upper or lower extremities of the human body. Depending upon the site and severity of the damage, a traumatic injury to the spinal cord can leave an individual with varying degrees of physical disability that can have a profound impact on an individualís overall quality of life and sense of well-being.  Findings from a number of federally funded epidemiological studies indicate that spinal cord injury is one of the most prevalent neurological disabilities in the nation. According to scientific data from the National Spinal Cord Injury Statistical Center and the United States Centers for Disease Control and Prevention (CDC), there are between 200 and 250 thousand Americans of all ages living with a mobility impairment resulting from a spinal cord injury in the United States today.

Epidemiological data from the CDC further indicates there are between 200 and 250 thousand Americans of all ages living with a mobility impairment resulting from a spinal cord injury in the United States today. Epidemiological data from the CDC further indicates that over half the patients that sustain a spinal cord in our country are male adolescents and young adults between the ages of 15 and 29 years old. A large percentage of these men reside in low income impoverished urban areas which have mainly African American and other minority populations. CDC data indicates that violent crime rates and drug and alcohol related motor vehicle accidents usually run higher than average in these neighborhoods; this significantly increases the risk of an individual sustaining a serious physical injury that can lead to spinal cord damage and its accompanying disabilities. Spinal cord injuries exact a serious social and economic burden on both individual and society. Data from CDC funded studies reveals that the United States government currently spends an estimated 4 billion dollars each year on the medical care and disability management of persons with spinal cord injury. Most of the money that pays for the financial cost of the medical care and other services these individuals require to survive comes from the American taxpayers which places a tremendous social and economic responsibility on patients, their families and society as a whole. (CDC unpublished data.)

The physical disabilities associated with a spinal cord injury represent a major life altering traumatic event that can have physical, psychological, and social ramifications for the individual and his or her family members who must now take on the role of caregivers. Social service professionals know that the   long-term care of a family member with a severe physical disability such as a spinal cord injury can be very demanding for those doing the caregiving. Studies conducted by the National Association of Family Caregivers indicate that the stress of taking care of a loved one with a long-term illness or disability can have devastating effects upon the physical and emotional health of the caregiver, leaving them unable to provide the level of assistance their family member requires. In addition, the physical and emotional stress of providing long-term assistive care to a family member with a spinal cord injury, the disability also places a considerable strain on a personís family relationships and financial resources. Data from clinical research conducted on this disability population over the last several decades has revealed that persons living with spinal cord injury are at increased risk for the development of several secondary comorbid medical conditions such as clinical depression and drug and alcohol abuse dependence.

Spinal cord injury can also place a severe strain on an individualís marital relationship when one partner has to take on the unfamiliar role of providing the other with continuous assistance with the tasks of daily living such as dressing, eating, showering, and in some cases, getting in and out of bed. They also must assume the complete responsibility of maintaining the financial stability of their household while still performing their caregiver responsibilities. The increasing pressures of trying to balance their breadwinner and caregiver responsibilities can often lead to marital discord between the able bodied and disabled partners, resulting in a decline in intimacy and basic communication. The constant struggle to cope with medical complications and increased physical  dependence of the spouse with the disability can often lead to a heightened risk of depression and feelings of resentment on the part of the nondisabled partner. These feelings can often result in the termination of the marriage through divorce. 

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