People with acquired spinal cord disorders find transition from rehab to the community easier when they’re shown the ropes by someone who’s been there first.
By Stephanie A. Kolakowsky-Hayner, PhD, Robert Medel, and Kazuko Shem, MD
In the past several decades, we have seen significant improvements in medical management and rehabilitation for individuals with acquired disabilities. With greater life expectancies, the emphasis of rehabilitation is shifting from medical management of acute conditions to challenges that affect quality of life (QOL) and community reintegration. Community reintegration is one of the ultimate goals of rehabilitation as life satisfaction of an individual with disability is dependent on the level of participation in the community. Despite the effectiveness of inpatient and outpatient rehabilitation services, a significant number of individuals remain unable to resume their previous activities, and participation in social activities is limited. Furthermore, individuals with disabilities encounter numerous challenges in returning to post-secondary education or employment.
Correlative studies have shown that social support has a positive effect on emotional status, physical health, QOL, and community integration for individuals with different types of disability. Social support encompasses interactions with family, friends, and peers that may serve informational, emotional, or instrumental purposes. Informational support consists of providing education, assistance in decision-making, and feedback. Emotional support includes an individual’s belief of acceptance, love, and opportunity for open and honest communication with others. Instrumental support encompasses the provision of assistance, resources, and services.
Current literature suggests that social support functions as a buffer or protective force against the stresses produced by living with a disability. Additionally, the perceived amount of social support, not the actual amount of support received, has been correlated with a better ability to cope with the disability. Those individuals with the most effective coping skills also report higher QOL. Supportive relationships and involvement with social networks have been correlated with psychological well-being and physical health decreased loneliness, and the absence of depressive symptomatology. An important component of participation and QOL is the ability of the individual to engage in productive activity such as employment or educational pursuits. However, it is estimated that 30-50% of individuals who have a disability and are of working age are employed while over 80% of people without a disability are working at competitive jobs.
There is information about over 4,100 organizations that support mentoring across the United States in the National Mentoring Database, which is housed at the National Mentoring Institute. There are two main types of mentoring relationships. Informal or natural mentoring relationships occur with extended family members, neighbors, teachers, and coaches; whereas formal mentoring occurs through organizations, and the mentors are usually unrelated individuals who volunteer through a community-, school-, or church- based social service program and are matched with young people who need or want a caring, responsible adult in their lives. Up until a few years ago, these relationships were primarily one on one and face to face relationships, but more recently, with the explosion in available information technologies, there has been emergence of online/electronic mentoring programs reported in the literature, including programs for those with special needs.
Quality mentoring relationships have been shown to result in positive outcomes in several areas in youth, including education and work, problem behavior, psychological well-being, physical health and social skills. Mentoring has also been used as a means to improve academic achievement and retention of older students or to facilitate career development among employees. However, there are few published reports regarding mentoring of individuals with disabilities.
Mentoring in Action
At our facility, the Santa Clara Valley Medical Center in San Jose, California, we have had a mentoring program for the last five years, which has provided mentoring for youth and young adults, ages 16 to 26 years, with disabilities. The program was funded by Rehabilitation Services Administration (RSA). This mentoring program, which was primarily a demonstration program, has worked with the existing community agencies and provided structure to the frequently confusing network of services for young adults with a recently acquired disability. Its objective was to implement mentoring relationships for supporting young participants (mentees) to achieve their individual post-secondary education and employment goals.
Mentees between the ages of 16 and 26 were matched one- to-one with adult mentors in the community who were either employed, attending school, or retired. Mentees were expected to have contact with their mentors at least four times per month, and these contacts could have been in the form of in-person visits, phone calls, or community outings.
Sixty-nine mentees have been matched to date. Twenty-two mentees completed the program with 6 mentees working and 10 attending school. In the 43 mentees who have completed least 6 months of the program, Satisfaction With Life Scale improved by 44%, Supervision Rating Scale improved by 39%, and the Disability Rating Scale improved by 49%.
Other outcome measures that improved by 37 – 49% were number of business associates’ interactions, number of conversations initiated with a stranger, and number of hours up out of bed.
The participants of our mentoring program included youth/ young adults with the primary diagnoses of TBI and SCI. One of these participants is Bismark who acquired a level C4 injury in the summer of 2006. After his injury Bismark recalls feeling depressed, embarrassed about being in a wheelchair and unsure of his future.
Case in Point
A couple of months after his injury, Bismark was matched with a mentor who lived in the same county and had a similar disability. He admits that in the beginning, he really did not know what to expect out of his relationship with his mentor and even doubted if it would be helpful. He did not feel comfortable asking questions about his disability, but was really thankful that his mentor was always open about sharing his own experiences about living a life with a disability.
As Bismark’s mentoring relationship progressed, he started to realize all the information his mentor was sharing applied to his own life with a disability.Not only was he receiving information about his disability; he was also learning how to advocate for himself. Bismark say she found his mentor relationship instrumental in his ability to reintegrate back into his community. After his injury, Bismark did not feel comfortable or confident about being out in public. But with the support and encouragement of his mentor, Bismark began going on outings, first with with his mentor and soon thereafter he began to go on outings on his own.
Because of this relationship, Bismark began to believe that he could go back to school. His mentor, who had acquired a level C-5,6 spinal cord injury, was a full time student at a local university. Bismark began to see education as a key to his own independence. He gives credit to his mentor for giving him the blueprint to successfully go back to school even while dealing with his disability.
Bismark is now three years post injury and feels that his mentor has been instrumental in his journey of recovery. He is currently taking classes at a local college and feels that his quality of life has significantly improved. With the support and encouragement of his family and mentor he no longer feels isolated and now feels optimistic about the future.
Through our mentoring program, Bismark not only found a mentor, he also found a friend. Due to his positive experience with his mentoring relationship he is now convinced that mentoring works and now looks forward to one day mentoring a young adult with a recently acquired spinal cord injury.
With the ongoing success of this program, we believe it would be beneficial to modify and expand the project to individuals of all ages, who have a variety of disabilities. Our center is currently seeking funding to support such expansion efforts within our community. Ideally we would like to develop peer support and mentoring programs throughout the country that could provide training, technical assistance, and ultimately improve education and employment outcomes and community reintegration on a national scale.
Stephanie A. Kolakowsky-Hayner, PhD; Robert Medel; and Kazuko Shem, MD, are, respectively, Director of Rehabilitation Research, Mentoring Coordinator and Co-PI of the Mentoring Project at the Santa Clara Valley Medical Center in San Jose, California.