Providing innovative services for survivors of brain injury

1. Evaluating Brain Injury Clubhouses and their effects on neurobehavioral functioning and participationJason Young, Community Brain Injury ServicesColleen McKay, University of Massachusetts Medical SchoolRon Seel, Shepherd Center Providing innovative services for survivors of brain injury

2. ABI Clubhouses Rise and Lack of Research • Approximately 25 in operation in the U.S. and Canada • Model adapted from mental health Clubhouse Philosophy • 5 ABI Clubhouses in Virginia • Over 1 million state dollars appropriated annually • Clubhouses are 1 of 3 state defined core safety net services • Very little empirically based evidence on the effectiveness of this model for persons with ABI which prevents: • Virginia from evaluating its return on its investment • Establishment of a firm set of best practices and standards for ABI Clubhouses • The model’s further widespread use, despite significant interest from other state government, private for and not for profit entities, families and survivors Providing innovative services for survivors of brain injury

3. Grant Partners • Community Brain Injury Services: Grant Administrator • University of Massachusetts Medical School: Co-investigator • Shepherd Center: Co-Investigator • International Brain Injury Clubhouse Alliance (IBICA): Consultant • 8 ABI Clubhouses Test Sites • 5 Virginia Clubhouses • Cornerstone Clubhouse: London, Ontario, Canada • Brooks Clubhouse: Jacksonville Fl. • Side by Side Clubhouse: Atlanta Ga Providing innovative services for survivors of brain injury

4. Grant Objectives • Implement an electronic collection system, the Clubhouse Profile Questionnaire (CPQ), in ABI Clubhouses to standardize data and outcomes generated by Virginia’s Acquired Brain Injury (ABI) Clubhouses (Colleen) • Evaluate the effectiveness of program level characteristics of ABI Clubhouses to identify key ingredients of the Clubhouse Model using CPQ data to inform ABI Clubhouse development, training, & accreditation; • Examine similarities and differences between Virginia’s ABI Clubhouse services and member outcomes with other leading ABI Clubhouses in the United States and Canada to identify best practices and opportunities for growth. • Examine impact of membership at a Clubhouse on neurobehavioral functioning (Ron) • Hypothesis: Clubhouse attendance will improve independence, safety, and quality of life • Mayo-Portland Adaptability Inventory (MPAI-4) and Safety Assessment Measure (SAM) Providing innovative services for survivors of brain injury

5. Grant Goals and Future Aims • Develop modified CPQ that can be used at all IBICA member ABI Clubhouses to build larger/ongoing data set. • Work with Clubhouse International and IBICA to develop training and accreditation mechanisms for ABI Clubhouses • Produce first published empirically based research on ABI Clubhouse model • Spur additional research on the ABI Clubhouse model Providing innovative services for survivors of brain injury

6. The Clubhouse Profile Questionnaire (CPQ) • Electronic database designed to obtain information concerning practices, characteristics, concerns, & performance outcomes of clubhouse programs. • Administered by the Program for Clubhouse Research at the University of Massachusetts Medical School • Developed with input from staff and members from traditional mental health clubhouses • Used by Clubhouse International for: • Quality assurance & program improvement, • Monitor progress of clubhouse accreditation & training • Track development of the Clubhouse Model over time Providing innovative services for survivors of brain injury

7. The Clubhouse Profile Questionnaire (CPQ) • Areas addressed in the CPQ include: • Funding; • Governance & administration; • Membership; • Staffing & staff credentials; • Work unit structure; • Employment; • Housing; • Services provided by the clubhouse; • Participation in clubhouse training; & • Research activities Providing innovative services for survivors of brain injury

8. CPQ data used in numerous presentations, reports and publications including: • Gorman, J.A., McKay, C.E., Yates, B.T., & Fisher, W.H. (2016). Keeping clubhouses open: Toward a roadmap for sustainability. Administration and Policy in Mental Health and Mental Health Services Research, 1-10. • Gorman, J. (2015). Keeping the clubhouse open: Toward a road map for clubhouse sustainability (Doctoral dissertation). American University. • Kelliher, S. (2006). Factors influencing member employment in International Center for Clubhouse Development (ICCD) clubhouses.(Doctoral dissertation). Antioch University New England, Keene, NH. • Macias, C., Barriera, P., Alden, M., & Boyd, A. S. (2001). The ICCD benchmarks for clubhouses: A practical approach to quality improvement in psychiatric rehabilitation. Psychiatric Services, 52, 207-213. • McKay, C. E., Yates, B. T., & Johnsen, M. (2007). Costs of clubhouses: An international perspective. Administration and Policy in Mental Health, 34, 62-72. • Substance Abuse and Mental Health Services Administration (US) (2012). Mental Health, United States, 2010 (Rep. No. (SMA) 12-4681). Rockville (MD): Substance Abuse and Mental Health Services Administration. • Substance Abuse and Mental Health Services Administration (US) (2013). Behavioral Health, United States, 2012 (Rep. No. (SMA) 13-4797). Rockville (MD): Substance Abuse and Mental Health Services Administration. Providing innovative services for survivors of brain injury

9. Funding for Safety Assessment Measure • National Institute on Disability (Independent Living) and Rehabilitation Research, U.S. DOE H133G080153 and U.S. HHS ACL H133G130149 • Emory University Center for Injury Control, Dissemination Grant, CDC, National Center for Injury Prevention and Control (R49, CE001494-01) • Shepherd Center Foundation Seed Fund

10. Safety assessment measure • Four primary safety risk measures: • Carrying Out Activities (Cognitive Ability) • Mobility (Walking and Wheelchair Use) • Judgment (Social and Participation) • Self-Control • Excellent content validity • Unidimensional; hierarchical structure • Good to very good reliability (person separation) • Predict unsafe events at 30-day follow-up

11. Survey

12. survey

13. Mayo-Portland Adaptability Indicator-4 (MPAI-4) • Recommended core measure in NINDS-TBI Common Data Elements • 29-item scale divided into three subscales: Abilities, Adjustment, and Participation. • 5-point anchored, Likert type response set: • 0  independent or normal functioning • 4  severe disability (75%-100% supervision required) • Participation items include self-care, social activity, independence in home activities, managing money, leisure and recreation, transportation use, and employment

14. Template: Clubhouse Outcomes Manuscript

15. For More Information Jason Young, MSW Executive Director Community Brain Injury Services Richmond, VA (804) 261-7050 Jason@communitybraininjury.org Colleen McKay, MA, CAGS Assistant Professor & Director The Program for Clubhouse Research Systems and Psychosocial Advances Research Center Department of Psychiatry University of Massachusetts Medical School Shrewsbury, MA 508-856-8471 colleen.mckay@umassmed.edu Ronald T. Seel, PhD, FACRM Director of Brain Injury Research The Crawford Research Institute Shepherd Center Atlanta, GA (404) 387-5625 Ron_Seel@shepherd.org