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Ronald C. Savage, Ed.D.
Many children and adolescents who sustain brain injuries in this country often fail to receive the serves they deserve. In addition, many service providers do not "connect" children to the next service delivery system. According to the National Pediatric Trauma Registry, less than half of the children needing rehabilitation are referred to those services and less than 2% of children discharged from hospitals after brain injuries are referred to special education services in their school.
Thus, it is not uncommon to find that various medical departments may not communicate with each other, medical facilities may not communicate with schools or community physicians, schools may not communicate with families, and on and on it goes. Hence, many children, through no fault of their own, fall through cracks created by the professionals. This leaves families scrambling to bridge the gaps between services.
However, when children do receive the appropriate services and referrals, the outcomes for them can be remarkable. The case study of Jimmy below outlines what can happen when professionals and families work together to support the needs of the child.
Emergency Medical Services
Jimmy was a 7 year old boy when he was injured in a motor vehicle-bicycle collision. Jimmy was struck by a truck in a rural area while riding his bicycle home from school. He was thrown over 30 feet in the air and struck a rock wall. The driver left the scene of the collision and Jimmy was found bleeding from his ears and unconsciousness approximately 30 minutes later by another driver. He was taken by ambulance to the emergency department of a local hospital and stabilized. Jimmy was then airlifted to a Level I Trauma Hospital due to the severity of his head injury.
At the Hospital Jimmy was seen by a team of pediatric specialists. He was operated on to remove a large subdural hematoma. Jimmy was in the PICU for 3 weeks until he began to regain consciousness. During that time he was followed by neurosurgery, neurology and internal medicine. He was evaluated by physical medicine and a core of rehabilitation therapies were started to improve his range of motion, feeding and swallowing, and his ability to attend and respond to his environment. His family received information and education about traumatic brain injury, as well as counseling services. In addition, a referral was made to the boy's primary care physician for continued follow-up and monitoring.
At week 5 Jimmy was discharged to the hospital's pediatric rehabilitation program where he received services from an interdisciplinary team consisting of neuropsychology, physical therapy, occupational therapy, speech and language therapy, special education, rehabilitation nursing, therapeutic recreation, counseling, and physical medicine. His school books and related materials were used to help Jimmy with his cognitive recovery. Jimmy remained in the rehabilitation for 2 months. Jimmy's family continued to receives information, education and counseling to support their needs.
Initial School/Home Reintegration
Six weeks prior to his discharge, a team meeting on Jimmy was held that included his family, special education services from his home school, his pediatrician, and his rehabilitation therapists and physicians. A coordinated discharge plan was developed to support Jimmy as he returned to his home, school and community. A 60 day Individual Education Plan (IEP) was developed with his family that established a series of transitional steps to help Jimmy reintegrate into his school. These steps included teacher and peer training, environmental and academic modifications to better support him in the classroom, counseling services for him and his family, integrated physical/occupational and speech/language therapies, and inclusion activities with his classmates. After 2 months Jimmy was fully transitioned into his 2nd grade classroom with a full-time tutor to help him with attention and concentration, memory, organization, and new learning. A neuropsychological evaluation was scheduled for Spring to monitor his strengths, needs and preferences.
Ongoing School Planning and Transition
At the end of 2nd grade, Jimmy's teacher for next year met with his IEP team to discuss his 3rd grade program. In addition, a summer program was created that would help Jimmy better prepare for 3rd grade and continue to help him with his cognitive and psychosocial recovery. Upon entering 3rd grade, Jimmy needed tutorial support services 3 hours per day which were reduced to 1 hour per day by Spring. At the end of 3rd grade, Jimmy's IEP Team held a meeting with his 4th grade teacher and the Principal of the middle school Jimmy would be entering next Fall. It was decided to continue with a summer program that would be carried out in his new middle school, plan for initial tutorial support at 3 hours per day, design another teacher training on brain injury education, and monitor his level of frustration academically and behaviorally as Jimmy transitioned through the critical 3rd grade-4th grade developmental milestone period.
Jimmy experienced many challenges during his middle school years. His teachers and his family reported an increase in academic problems with content materials, especially mathematics and science. He had difficulty remembering assignments and following through on independent work. His family and his peers also report Jimmy's difficulty in social situations and age-appropriate behaviors. The school included in his IEP additional supports to help him with content materials (study guides, audiotapes of textbooks, additional time with tests) and counseling supports were increased to help Jimmy with social skills and peer relationships. Annual neuropsychological evaluations were scheduled with the help of the school and Jimmy's pediatrician. Jimmy's family continued to receive support services from the state Brain Injury Association and their own family counselor. Jimmy's IEP Team meet every 6 months or as needed to develop preventive strategies or to modify his educational plan. In grade 5 Jimmy began actively participating in his IEP meetings.
School and Work/Community Transition Planning
At the end of 8th grade an IEP meeting with his middle school teachers was held with the high school special education teacher, the principal, and key content area teachers. Jimmy's IEP for entering high school again outlined teacher and peer training, environmental modifications to enhance his opportunity to learn, as well as the initiation of a Transition Plan to prepare him for eventual work experiences and independent living. Throughout Jimmy's high school years, the emphasis of his educational plan was focused on developing and strengthening compensatory strategies to help him learn and socialize; providing him with work experiences to strengthen his vocational interests and skills; and creating opportunities for him in school and at home to develop community skills to enhance independence. During Jimmy's last 2 years of high school, his IEP meetings were also attended by his vocational rehabilitation counselor and his independent living advocate. His Transition Plan was continually modified to incorporate his strengths, needs and preferences, as well as provide opportunities for Jimmy to practice and learn skills in the community.
Post High School and Community Integration
After graduating from high school, Jimmy began working 25 hours per week with a building maintenance company taking care of plants in business offices. His job coach also had Jimmy enrolled in a postsecondary technical school studying computer data entry. Jimmy lived with his family and attended many area community events. He belonged to a local theater group and attended with his father an evening course in CPR. He also worked with his independent living advocate to find an apartment and a roommate for next year. Jimmy continued with his personal counseling and looked forward to having a quality of life that was self-determined and supported by his family, friends and community. His dreams included additional postsecondary education, a full-time job, his own apartment, and a loving relationship with a young woman.
This case study, a composite of a number of children and adolescents, was created by Ron Savage for the Brain Injury Association, Inc. to demonstrate the need to develop a system of seamless transitions for long term success. Unfortunately, many children and adolescents "fall through the cracks" that professionals create. Brain injury for children and their families does not have to become a life-time experience of repeated breakdowns in our systems if all parties develop true partnerships.
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