Lessons Learned: 15 Years of BrainSTARS in the U.S.

Lessons Learned: 15 Years of BrainSTARS in the U.S. Jeanne E. Dise-Lewis, Ph.D. Professor University of Colorado School of Medicine Director, Psychology Programs in Rehabilitation Medicine Children’s Hospital Colorado Jeanne.dise-lewis@childrenscolorado.org Vilans Medical Education June 7, 2012 cation June 7, 2012

In the U.S., cognitive rehabilitation after ABI happens at home and in school. The primary agents of cognitive rehabilitation are parents and school personnel. School personnel are not prepared and do not feel competent as brain-injury educators. Relatively brief education can be effective. Effective intervention requires some kind of follow-up. Effective intervention requires a team approach. Lessons Learned: 15 Years of BrainSTARS in the U.S.

Are School Personnel Ready? In surveys of workshop attendees, more than 800 school personnel were asked “Before today, how much education/training have you had in TBI in children and youth?” None 17% A Little 32% Some 38% A lot 13% Where did you receive your education/training? Undergrad 13% Grad school 32% Workshops 41% Continuing education 19% On job experience 58% Professional reading 40% Talk with colleagues 40%

BrainSTARS 2-Day Workshops Training School personnel, Family members, and Public Health nurses, and Community members Didactics Guided use of BrainSTARS Manual Case examples Group exercises Participant receives a manual to keep

BrainSTARS 2-Day Workshops Program Evaluation Data (N=826) Understand sources of PABI and its associated behavioral, psychosocial, and learning disabilities: 4.71 Understand the impact of PABI at different stages of development: 4.75 Understand interventions effective for various behavioral and learning difficulties: 4.60 Feel competent in using the BrainSTARS Manual to look up target symptoms, identify underlying neurodevelopmental weaknesses, and develop intervention plan: 4.80 1= not at all 2= somewhat 3= well 4= very well 5= exceptional

BrainSTARS 2-Day WorkshopSurvey Monkey 6 mo Follow-up (N=239) 53% contributed TBI-educated information at IEP, school staffing or other student-related meeting. 98% reported workshop was moderately (36%) or very (62%) helpful in understanding and addressing cognitive and academic problems of students who have ABI. 96% reported workshop was moderately (26%) or very (70%) helpful in understanding and addressing behavioral problems of students who have ABI. 65% sought more consultation regarding a student who had ABI. 76% had used the manual some (51%) or quite a bit (25%).

What are Parents Telling Us? CDC study (N=196) Medical and physical therapeutic needs are identified and met well, regardless of home community. There is a critical need for psychological services and “something different” to happen in school regardless of home community. This need is not identified at one-month after hospital discharge, but appears at about 5-8 months after hospital discharge, as well as at developmental stage transition points. This need varies by developmental stage. Need increases three-fold for every five years’ age change from age 2 through age 18.

The BrainSTARS Consultation Program Transfers medically-based brain injury knowledge to parents and school personnel of a specific child, via BrainSTARS consultant. Develops competent team functioning, so that the parents and school personnel can rely on each other for continued problem solving and support. Leaves a resource (BrainSTARS Manual) to support ongoing collaborative problem-solving regarding developmental needs of the child.

BrainSTARS Consultation: Values and Model It takes a team effort by normal people in student’s life to get the child back on track. Knowledge about the impact of brain injury on children’s development is a necessary foundation for a well-functioning team. Teams need functional, practical suggestions. Accommodations need to be flexible and routinely updated. Develop and support family-school-consultant teams. Educate team members about brain injury and interventions/ accommodations. Develop strategies and functional accommodations with BrainSTARS Manual. Three consultation sessions over 4+ months.

Three sessions over 4-6 months Create a neurodevelopmental understanding of the child’s problems Teach effective responses to problems in learning/behavior that result from ABI Actively support family-school team interaction Teach team members to rely on the BrainSTARS Manual and each other for problem solving BrainSTARS Consultation Objectives

BrainSTARS Consultation : Impact on Parent and School Personnel Skills I can identify (Andrew)’s cognitive or behavior problems clearly and specifically in a way that allows for accurate observation and measurement. I can link (Andrew)’s problems/symptoms to underlying neurodevelopmental deficits/challenges. I can identify learning objectives for (Andrew) that are specific and progressive. I can structure my home/ classroom to support (Andrew’s) positive behavior and effective learning. I can arrange positive antecedent conditions to set the stage for (Andrew) to display more organized, successful behaviors.

BrainSTARS Consultation : Impact on Parent and School Personnel Skills I think that other members of the team and I have a similar understanding of (Andrew)’s needs and of what to do to assist him/her. I can use testing information effectively in planning programs and accommodations for (Andrew). *p<.05 (1-tailed t-test) Parents N=26 School Personnel N=37

BrainSTARS Consultation : Impact on School Personnel Skills I feel confident in my ability to respond effectively when (Andrew) has a behavior problem. I can figure out the causes of a recurring behavior problem that (Andrew) has. I can understand how (Andrew)’s behavior and challenges have affected his/her family and can contribute to identifying and meeting family needs/priorities. I can identify and obtain community supports and services for (Andrew) and his/her family. *

BrainSTARS Consultation : Impact on Parent Skills I can perform a “task analysis” in order to break down a complex skill in to component sub-steps so that (Andrew) can learn/build the skill more effectively. I can participate in the IEP process in such a way that (Andrew)’s educational and other school-related needs are addressed in a specific, individualized, and comprehensive way. * p<.05 (1-tailed t-tests) Parents N=26 School Personnel N=37

Comparison of Impairment Ratings Pre and Post BrainSTARS Consultation No 90 Impairment 80 70 Transient 60 Post IMPAIRMENT RATING 50 Mild Post 40 Post Moderate Post Post 30 Pre 20 Pre Pre Pre Pre Significant 10 Severe 1 2 3 4 5 Neurodevelopmental Skills

Skill Set of Consultant • Clinical Skills related to group process • Dogged optimism and assurance that this will work • Validate multiple viewpoints • Encourage all team members to contribute • Reframe unhelpful attitudes, attributions about each other • Transform negative interpretations of student’s behavior into understanding of underlying cause • Teach skills that will change presenting problems by addressing underlying ND deficits

Skill Set of Consultant • Knowledge about pediatric brain injury • Commonly affected neurodevelopmental skills • Uneven profile • Impact on Executive Functions • Developmental stages and rippling impact of BI • Connect symptoms to neurodevelopmental deficits • Understanding of interventions • Failure of consequences-based interventions • Positive behavioral supports/ antecedents/ modeling • Build on strengths, areas of interest and capacity

Materials • BrainSTARS Manual • Self Assessment of Skills • BRIEF– T and P • BASC-2– T and P • Neurodevelopmental Cluster Rating Scale • Anything parents or school personnel want to contribute– reports, school papers, IEP, questions, etc.

Teacher BRIEF

Parent BRIEF

Procedures • Pre-consultation: Contact school and parents 1) arrange meeting time at school’s convenience; prepare school point-person to receive forms and get them filled out/returned 2) send Self-Assessment of Skills forms and BRIEF to parents and school personnel with mechanism for return of these before meeting # 1 1 BRIEF-Parent and 1 BRIEF-School 1 BASC-Parent and 1 BASC-School 1 Skills form for each person who will participate in consultation program 3) review Skills forms; score BRIEFs and BASCs

Procedures • Session #1 1) Hold team discussion to identify student’s areas of cognitive and behavioral difficulties and strengths. 2) Use team discussion of problems/strengths, with BRIEF and other data to zero in on likely neurodevelopmental deficits. 3) Identify up to 5 neurodevelopmental deficits on NDC and rate them as a group. 4) Use Skills forms to identify educational needs of team members and discuss intervention approaches, directing participants to Chapters 5 and 6. 5) Look at Blue Tab sections that correspond to NDCs and begin discussion of specific interventions, personnel, etc. to address one or two problems. 6) Direct team to manual sections of greatest relevance; bookmark these and assign homework reading of Chapter 3 and section of Chapter 4. 7) Set up a system of proactive parent-school communication. 8) Set next meeting date/time.

Procedures • Session #2 1) Review progress/snags. 2) Reinforce connection between symptoms and neurodevelopmental deficits– new wine in old bottles. 3) Assist team to develop exercises, accommodations, or interventions to respond to ongoing problems. 4) Look for examples, settings in which child is behaving appropriately or intervention is working; turn to team members for ideas/ suggestions/ problem solving.

Procedures • Session # 3 1) Review progress/snags. 2) Reinforce connection between symptoms and neurodevelopmental deficits; refine interventions. 3) Fill out post-measures: Neurodevelopment Cluster ratings (Team) Self-Assessment of Skills (each member) BRIEF (one parent and one teacher) BASC (one parent and one teacher) 4) Discuss developmental stages and encourage team to anticipate need for next BrainSTARS consultation.

Questions/ observations from your use • O: The language is sometimes too academic for parents • R: yes– and, in addition, some adults do not learn optimally from printed materials. This is one reason for having the consultation sessions. It is important for the consultant to assess the parents’ learning styles and translate, illustrate, paraphrase the material for them. • Q: It’s big and heavy; can we copy relevant sections? • R: quit whining, Eric • Real R: Yes! We’ve found it especially useful to copy chapters 5 & 6 and specific Blue Tab sections... your experience? • Also, its size and heft might make it intimidating to parents. The consultant should also flag pages and sections of chapters for the parents to read and encourage the parent to highlight or make pencil notes in the margins.

Questions, critiques, observations from your use • Q: Is there a version for siblings? • R: what a grand idea! No, there is not right now, but I think this is a real need, based on my clinical experience with families over the years and our BIG support group. • Others?

Lessons Learned: 15 Years of BrainSTARS in the U.S.