Behavioral Issues after Brain Injury: Where to from here?

Behavioral Issues after Brain Injury:Where to from here?

Marty McMorrow, MS

Director of National Business Development

The MENTOR Network

marty.mcmorrow@thementornetwork.com

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

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)

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

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”

Issues displayed by persons in Neurobehavioral Rehab 1998-2006

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Behavioral Service / Support Needs(Pieces of the Service Puzzle?)

1. Early Intervention during hospital based Rehabilitation

2. Intensive Neurobehavioral Rehabilitation

3. Outcome oriented, home and community services (Residential, Clinic-Based, OP / DT)

4. Ongoing home and community based supports

5. Periodic Behavioral Stabilization / Respite

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

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

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

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

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)

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

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

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

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???

Hypothetical proportion of people involved in a “mature” service array

Intensive NBR

Early Intervention

Community Services

Community Supports

Stabilization / Respite

“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)

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.