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Fighting for Independence
March 8, 2011
Rarely does the thought of being paralyzed from the neck down cross the mind of a nineteen year-old. For Billy Bennett, that became a reality on November 24, 2007, when he sustained a penetrating neck wound which resulted in a C2 fracture, cord transection, and right vertebral artery transection. Having sustained an injury that would terrify any nineteen year-old, Billy was faced with anger and frustration, but never gave up his fighting spirit. During the two years, five months, two weeks, and two days at many hospitals, Billy overcame remarkable barriers associated with ventilator dependence, quadraparesis and chronic medical illness. In addition to his physical limitations, Billy suffered the loss of his mother, causing him additional grief. Billy's anger about his situation resulted in noncompliance and acting out at his care team. While things seemed hopeless for Billy, his mental and physical strength allowed him to keep going, and work with his caregivers to plan for a new life. After months of planning and preparation, along with some luck and good timing, Billy was discharged home, to be independent in his own apartment in Quincy.
Billy's independence has not come easy; he has faced many barriers that needed to be conquered if he wanted to live outside of a hospital. Billy's acute medical needs were managed at MGH, with several discharges to Rehab and LTAC settings that were interrupted by new medical complications. Back in the MGH RACU, Billy's aunt and uncle attempted a home discharge plan that soon fell apart after they realized the enormous commitment. At the time Billy was twenty years-old, too old for a pediatric unit, but also too young for a facility that tailored to an adult population. Many of the facilities would not accept Billy because of his young age and his life-long medical needs. One of the team members who worked with Billy in the RACU was Laurene Dynan, Case Manager Specialist, who helped to put a plan into place to empower Billy to slowly take control of his environment.
Laurene listened to Billy and to each of his wishes. She joined the weekly support meetings with the RACU clinical team and with Dr. Ron Hirschberg, PM and R physician from Spaulding, to help strategize a stable care plan. Laurene involved Billy in decision-making towards his goal of living independently. With the guidance of MGH Case Management leadership, Laurene engaged representatives from the community and state agencies to help guide Billy through the necessary steps to live independently. Laurene helped to put the foundation in place for Billy's independence.
After much planning and collaboration, Billy was admitted to Spaulding Cambridge to begin the next step of his journey. Both care teams worked hard on a seamless transition plan, where his MGH physicians, nursing team, Psych CNS and social worker provided verbal and written information to his new care team at Spaulding Cambridge. Billy's patient care team, along with nursing leadership, were able to organize Billy's MGH PCA caregivers follow him to Spaulding Cambridge for a period of time to provide his care and to help the SHC staff slowly transition him into their care. Billy's stay at Spaulding Cambridge was far from easy. Billy met challenges outside of his therapies while working alongside Case Manager Lu Ann Fiorillo and Social Work Supervisor Anne Marie Dattero. They set up meetings with members of a number of community organizations, including the Greater Boston Chapter of the National Spinal Cord Injury Association, Mass Health, Massachusetts Rehabilitation Commission, Quincy Housing Authority and Boston Center for Independent Living, to start to identify what steps needed to be in place for a possible home discharge. His care team at SHC, led by Dr. Sylvio Blanco, conducted weekly meetings to discuss his progress, barriers towards independence and a possible discharge plan. As Billy's spirit improved with the thought of living independently, his most important job was to interview and hire his PCAs with the help from Anne Marie. Without any work experience, Billy was making decisions on his own, and beginning to manage his team of PCAs. After many home care companies refused to accept such challenging home discharge, Lu Ann and Billy were able to engage Denmark Vent Company, to take on Billy's case. The SHC team also decided on a discharge date which made him eligible to receive his custom wheelchair. His therapists worked hard to complete the application and get him fitted for the right chair. Once he was mobile, he was a new man. Through donations, Billy's care team acquired a laptop computer and installed Dragon speech recognition software to make his transition back home easier.
Today, Billy is living independently in his apartment with a staff of PCAs, under the guidance and supervision of his loving sister Amanda. Amanda is currently in nursing school and helping manage Billy's PCAs. Amanda never left Billy's side during his treatment and was an important factor in applying for housing. One wish that Amanda was unsure about, but granted to Billy was a cat by the name of Gwen. Gwen has become an important family member, not only to Billy, but also to Amanda, the PCAs, and Billy's father who lives out of state but visits when he can. Gwen provides companionship, love, and entertainment when Billy's friends and family are unable to be by his side.
Billy's story is inspirational and he has a newfound love for life. He has already made his way back into the community, and has even embarked on speaking to high school students involved with Department of Youth Services. Billy's fight for survival has motivated him to speak out against crime and violence that many adolescents face today. With Billy's dedication to the community he may offer the support and guidance to teenagers so they do not have to experience the battles and hardships he has endured.
Anne Marie Dattero, Lu Ann Fiorillo, Laurene Dynan, and Dr. Sylvio Blanco.
Billy's Special Thanks go to: Jonathan Hobs and Mike Ferriter