BrainSTARS Brain Injury: Strategies for Teams And Re-education for Students

1. BrainSTARSBrain Injury: Strategies for Teams And Re-education for Students Jeanne E. Dise-Lewis, Ph.D., Associate Professor, Department of Rehabilitation Medicine, Principle Investigator Hal C Lewis, Ph.D., Assistant Professor, Department of Psychiatry, Program Evaluator

2. Acquired brain injury isthe leading cause of death and disabilityfor children in the U.S. ABI directly alters brain development, which in turn affects: personal development emotional development academic development social development There are2,600,000children in the U.S. with ABI Many of these children are not identified as having ABI and do not have access to accommodations(school, behavioral treatment, community resources) that address their special needs Pediatric Acquired Brain Injury The Problem

3. BEHAVIOR • tantrums, impulsive or aggressive episodes • withdrawn, shy, incommunicative behavior • poor attention in class • apparent lack of "motivation" and concern about performance • weak self-advocacy skills • poor response to feedback or consequences for misbehavior

4. SOCIAL AND PEERRELATIONSHIPS • loss of friends • reduced participation in typical social activities (camps, clubs, sports) due to cognitive or behavioral difficulties • missing out on stage related social markers (babysitting, staying alone, learning to drive a car) • difficulty "reading" social cues • weak self-monitoring and judgment, leading to social blunders • reduced social opportunities due to fatigue, therapy appointments, and physical limitations

5. ACADEMICACHIEVEMENT • spotty, uneven acquisition of new learning • inconsistent performance in class • messy, incomplete, or disorganized work • incomplete assignments or work not handed in • difficulty applying and generalizing information and skills • limited initiation of academic tasks

6. BrainSTARS is: • a U.S. Department of Education OSERS Model Demonstration Project(#H324M990060-0) • an interdisciplinary project teamthat includes physical therapy, psychology, occupational therapy, speech-language therapy, special education, and medicine • enhancingcommunity awarenessof pediatric BI • buildingcommunity teamswith family members, teachers, special education administrators, and project consultants • providing consultation and training experiencesfor educators and health professionals • producingeducational products: • BrainSTARS manualfor teachers and parents • BrainSTARS curriculumfor school personnel

7. It takes ateam effortto intervene effectively Knowledgeabout the impact of brain injury on children’s development is a necessary foundation for a well-functioning team Teams need functional andpractical suggestions Every student with BI (and his/her family) is unique, with continuous development anddynamic needs Family-school-consultant teams are developed and supported by the model Telephone helpline and inservice training events educate team members about brain injury BrainSTARS manual provides strategies and functional interventions Ongoing consultation,classroom observation and school meetings address evolving team needs Program Components Values

8. BrainSTARS Manual Our interdisciplinary team has developed a comprehensive manual for parents and teachers. The manual includes background information about brain injury, child and adolescent development, ways to create positive change, a comprehensive list of problems associated with brain injury, and recommended interventions. The manual has been reviewed by our Advisory Board of parents, school personnel, and students with brain injury, as well as by a group of national experts. We are in the process of field-testing it with 40 teams working with children who have acquired brain injuries. The manual is being revised and will be available in February 2002.

9. The BrainSTARS Telephone Helpline …was established to increase access to consultation and information for parents and teachers. From June, 1999 through October, 2000 (16 months) there were 116 phone calls logged with basic data regarding the caller, the child being discussed, the nature of the conversation, and follow-up actions and/or outcomes.. Thirty-six percent (36%) of the calls have been from parents, fourteen percent (14%) have been from teachers, forty-three percent (43%) of the calls have been from related services providers, and five percent (5%) have been from physicians. The conversations have primarily been about behavioral concerns regarding students, learning issues, resource identification, consultation requests, and training requests. Primary outcomes have been provision of information and written materials, referral to resources and services, and brief intervention planning.

10. Phase I Consultation Data Teams were established for 17 BrainSTARS students during this early project phase. Though the BrainSTARS Manual was not yet available, consultation to the team took place via provision of written materials, participation in school meetings/IEP meetings, phone consultation, and in-school observation/planning meetings. Team members were asked their opinions about the degree to which BrainSTARS consultation led to each of the following outcomes. This was rated on a five-point scale, as follows: 1=Not at all, 3=Somewhat, and 5=Very Much. Respondents were also asked to provide their opinions regarding the degree to which BrainSTARS consultants displayed the characteristics listed. Again, these were rated: 1=Not at all, 3=Somewhat, and 5=Very Much. In future phases of BrainSTARS consultation, a more elaborate consultation model will be employed, using the BrainSTARS manual and regularly scheduled team development activities. With approximately 100 students and their teams, the above data will be augmented with information regarding changes in student behavior and learning abilities, family functioning, and resources.

11. Training Events Data Over 600 individuals have participated in 14 training events conducted by BrainSTARS staff primarily in the Denver and Boulder metro areas. Comparable data were collected at 8 of these events with 381 total respondents. Eighteen (18) of the participants were parents of a child with a brain injury. Primary disciplines represented were: Special Education (117), Speech/Language Pathology (79), Nursing (45), Occupational Therapy (34), Psychology (28), Social Work (18), Physical Therapy (9), Early Childhood Special Education (8), and a few from each of Audiology, Service Coordination, Medicine, Parenting, and Education Administration. Educational level of these training participants was: High school/GED (4), Associate’s degree (18), Bachelor’s degree (62), Master’s degree (237), Doctoral degree (23). Their primary work settings were: School (320), Home/Community (22), College/University (5), Hospital or Clinic (6), Community or State Agency (6), and a smattering of other locales. Workshop participants were asked to rate the extent to which each of the three learning objectives for that event were accomplished and to indicate their level of agreement with a series of statements regarding qualities of the workshop and presenters. A five point rating scale was used with 1=Not at all, 3=Somewhat, and 5=Very much. Sample learning objectives and the six “quality” questions asked at every workshop are listed below, with the mean of the ratings and the standard deviation of the ratings for each.

12. Research Directions • Collaborate with national efforts to conduct research on best practices along a continuum of care for children with BI. • Catalyze interdisciplinary research efforts regarding medical, educational, and psychosocial interventions for children with BI and their families. • Study technology applications that may improve functioning and quality of life

13. Assistive Technology Applications • new technologies to assist memory, writing, self-expression, organization, planning, initiation and self-control • computer-based “universal design” of curriculum for students with brain injury • CD-rom version of BrainSTARS manual • videotaped lectures and inservices for outreach and education of professionals in rural areas

14. Collaboration • Build on current interagency collaborations to offer educational experiences and inservice training to educators and medical and allied health professionals • Develop ties with higher education to provide preservice training in pediatric BI • Extend BrainSTARS innovations to wider community • mental health • juvenile justice system • early intervention systems (Part C) • child care