Behavioral Issues after Brain Injury: Where to from here?

1. Behavioral Issues after Brain Injury:Where to from here? Marty McMorrow, MS Director of National Business Development The MENTOR Network marty.mcmorrow@thementornetwork.com

2. Purpose • Recognize and characterize the prevalence and diversity of behavioral needs following ABI • Distinguish between services/supports that are needed and available for different people • Characterize some service/support challenges and solutions • Leave with a clearer picture of the service/support array that is needed to address behavioral issues after brain injury and a heightened sense of advocacy for these individuals

3. Prevalence and Needs • Annual Incidence of TBI at the ER = 1,500,000 • Annual number who are hospitalized and survive = 230,000 • Annual number permanently disabled = 80,000 – 90,000 (~37% of those who are hospitalized and survive) • Annual number of disabled in need of intensive/ongoing behavioral supports = 5,100 (~6% of those who are disabled annually) • Estimated total number of persons living with permanent disability from TBI = 6,000,000 (5.3M updated annually) • Estimated total number of disabled in need of intensive/ongoing behavioral supports = ~360,000 (Derived from CDC, BIAA, NASHIA, NDRN)

4. Brief Characterization of Behavioral Issues • Early confusion/agitation (e.g., Rancho 4) • Adjustment, depression, personality, social and emotional issues that are self managed with or without organized assistance from others • Intensive, disruptive, or dangerous behavior that interrupts “rehabilitation” and “requires” external assistance from others (often includes Psychiatric Dual Diagnosis) • Ongoing/dynamic behavioral residuals of brain injury

5. Characterizing “intense” behavioral issues • Diminished awareness of difficulties • Predictable topics/situations that produce upset • Tendency to rationalize or blame others for problems • Tendency to perseverate during upsets • Others “walk on eggshells” • Diminished problem solving skills under stress • Difficulty receiving corrective feedback • Resistance to typical rehabilitation agendas • Behaviors that produce risk to self or others • Post injury experience with “Behavior Management”

7. Behavioral Service / Support Needs(Pieces of the Service Puzzle?) • Early Intervention during hospital based Rehabilitation • Intensive Neurobehavioral Rehabilitation • Outcome oriented, home and community services (Residential, Clinic-Based, OP / DT) • Ongoing home and community based supports • Periodic Behavioral Stabilization / Respite

8. 1. Early Intervention during Rehabilitation • Readiness of typical in-hospital rehabilitation programs • Inclusion of specific behavioral expertise on the team (not just about medication management) • Staff training related to interacting with people who are confused and agitated • Staff and environmental willingness / readiness • Protocols to reduce unwanted discharges or transfers

9. 2. Intensive Neurobehavioral Rehabilitation • Outcome oriented / active treatment intended to teach alternatives to unwanted / dangerous behavior • Enhance involvement in rehabilitation agendas, daily routines, and community-based activity • Team approach that includes (cognitive) behavioral and medical leadership • Might involve an array of “specialized” environments

10. 3. Community-based Services • Continuation of outcome oriented approaches within a community integrated setting (residence or home) • Incorporation of “therapies,” structured activities, and community orientation as a part of the program • Goal oriented / time based intervention • Services geared toward discharge / next environment / reduced cost of care

11. 4. Ongoing Supports • Long term, home and community based supports • “Para professionally” driven programs • Ongoing emphasis on gradually increasing autonomy, productivity, and quality of life • Diverse options for efficient delivery of support services • Often intermeshed with MR/DD programs

12. 5. Behavioral Stabilization / Respite • An organized approach for providing service / support during a crisis that may disrupt an individual’s life • “On site” or alternative service site that is intended to be brief and geared toward a return to “normalcy” • A brief of time when caregivers and participants take a break from each other • Either model may have an outcome focus • Capable of being repeated given dynamic nature of behavioral issues (nobody’s at fault)

13. Challenges inherent in operating without all the pieces of the service puzzle • Many persons are discharged or transferred from hospital based rehabilitation prior to full benefit • In-state Intensive Neurobehavioral Programs often do not exist and “out of state” programs are expensive, far between, and sometimes do not result in desired or generalized outcomes (~70% will benefit, but…) • Home and Community based programs are often not equipped to accommodate intense behavioral issues (e.g., the $ leap from Med Rehab to Waiver is too great) • Very few of the few SL Waiver services that are available will accommodate intensive / ongoing behavioral issues

14. Challenges inherent in operating without all the pieces of the puzzle (continued) • Many persons with brain injury are served in systems that have been created for persons with MR/DD • TBI Waivers are mostly frequently administered from service menu’s by departments or persons who are more familiar with MR/DD • Persons with brain injury, who may benefit from an outcome oriented approach, are often served in Supported Living service models • $$ does not seem to be available / adequate to develop the array of services and supports needed by persons who have experienced brain injury

15. Solutions – “Just” complete the puzzle • Find ways to assist in the infusion of behavioral expertise in hospital based rehabilitation (keep folks on the pathway) • Identify existing partners and/or create localized Intensive Neurobehavioral Treatment options • Create more outcome oriented Waiver options (operationalize these models) • Enhance readiness of certain programs offering ongoing supports for persons with more intense behavioral needs • Identify /develop behavioral stabilization and respite options

16. Solutions - Other • Provide Service Coordination that ensures flexibility and fluidity • Don’t try to reinvent the wheel (good models and partnerships exist) • Find ways to demonstrate cost effectiveness of outcome oriented approaches • Identify and deliver specific training related to brain injury across human service systems (“professionals” need to define their approaches so consumers can choose) • Continue to create public – private collaborations • Untangle relation between funding type and service site • Other???

17. Hypothetical proportion of people involved in a “mature” service array Community Services Intensive NBR Community Supports Stabilization / Respite Early Intervention

18. “People require varying degrees of assistance from others in order to be free from harm, attain personal goals, and establish a sense of satisfaction with living.” (Baumann and McMorrow, once upon a time)

19. Some Related References • National Association of State Head Injury Administrators (2006). Neurobehavioral issues of traumatic brain injury: An Introduction. Brown, T.W., Capuco, J., Helgeson, S., McMorrow, M.J., Murdock-Elliott, C. & Ryall, C. (Eds.). Neurobehavioral Health Committee. Bethesda, MD. • McMorrow, M.J. (2007). Behavioral challenges after brain injury. Brain Injury Association of America (Awareness Month Pamphlet). Alexandria, VA: BIAA • McMorrow, M.J. & Guercio, J. (submitted). Frequency and types of unwanted behavior exhibited in Neurobehavioral Rehabilitation. Journal of Applied Behavior Analysis. • McMorrow, M.J., Braunling-McMorrow, D.L., & Smith, S. (1998). Evaluation of functional outcomes following proactive behavioral residential treatment. Journal of Rehabilitation Outcomes, 2 (2), 22-30 • Jacobs, H.E., McMorrow, M.J., & Hudson, J. Reducing the use of restraint and seclusion of individuals with traumatic brain injuries. Health Resources and Services Administration: Federal TBI Program Web Cast, Washington, D.C., July, 2006.