Brain Injury Clubhouses: Coming to a community near you

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Brain Injury Clubhouses Coming to a community
near you

• Deborah Giesler, MS, CCC/SLP
• Executive Director
• Midwest Brain Injury Clubhouse
• Jason Young, MSW
• Executive Director
• Community Futures Foundation

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Todays Objectives

• History of the Clubhouse model and how it has
  been adopted for the brain injury population
• 2 states approaches to developing the model
• Clubhouse services and how they integrate with
  existing services in the community
• Outcomes for survivors
• -Debra Jones, Denbigh House member
• Future of the clubhouse movement

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History of The Clubhouse Model

• Developed in 1948 at The Fountain House in New
  York.
• Historically used with mental health populations.
• Hundreds of clubhouses worldwide.
• Developed as a client driven response to
  deinstitutionalization.
• Governed by ICCD, the International Center for
  Clubhouse Development

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ICCD Standards

• Philosophical roadmap37 Standards in all.
• Defines expectations relative to membership,
  staff and member relationships, space,
  work-ordered day, services offered, functions,
  governance, funding, and administration.
• Members are involved in all aspects of running
  the program, and all work is meaningful and task
  oriented.

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History of the Clubhouse Model and Brain Injury

• Started in the late 80s with a mixed program of
  traditional brain injury rehab and clubhouse
  philosophy
• While these attempts largely failed, precedent
  was set and by early 90s three clubhouses were
  operating in U.S.

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Todays ABI clubhouses

• About 20 in the U.S, 4 in Canada, several other
  international BI Clubhouses
• Many have banded together to form IBICA, the
  International Brain Injury Clubhouse Alliance
• Interest high from state agencies, advocates, VA,
  and survivors to develop new BI Clubhouses

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ABI Clubhouse Standards

• Approved by IBICA in 2008
• Based largely on the ICCD standards but modified
  for BI Clubhouses
• ICCD consulted on developed of BI clubhouse
  standards

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Key Standards

• Membership
• Staff-Member Relationship
• Space
• Work Ordered Day
• Employment Education
• Functions of the Clubhouse
• Governance

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Membership

• Voluntary and without time limits.
• Members choose the way they utilize the Clubhouse
  and the staff with whom they work.
• No agreements, contracts, or rules intended to
  enforce the participation of members.
• All members have equal access to every clubhouse
  opportunity.

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Staff-Member Relationships

• Colleagual type relationship
• All meetings open to members and staff
• Responsibility for Clubhouse operation rests with
  members and staff

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Staff Responsibilities

• Clubhouse staff have generalist roles, share
  employment, housing, evening, weekend, and unit
  responsibilities
• Number of Clubhouse staff sufficient to engage
  the membership, small enough to make operation of
  Clubhouse impossible without member involvement

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Work-Ordered Day

• Members and staff to work side by side to run the
  program.
• All work is designed to help members regain
  self-worth, purpose and confidence not intended
  to be job specific training.
• Members have the opportunity to participate in
  all work of the Clubhouse.

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Members working side by side
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Work Ordered Day

• Members and staff work side by side to run the
  Clubhouse
• Clubhouse work is organized into Work Units
• Day treatment or therapy programs inconsistent
  with work ordered day philosophy

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Employment

• Clubhouse supports member returning to work
  through a variety of employment services
• -Volunteer placements
• -Vocational Training and Assessment
• -Transitional Employment
• -Supported Employment

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Functions of the Clubhouse

• Easily accessible, located in the community
• Community supports provided by members and staff
  of Clubhouse includes helping with benefits,
  transportation, housing, advocacy, medical,
  financial.
• Provides opportunities for member education both
  in house and external
• Has weekend and evening social programs

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Governance and Administration

• Clubhouse has its own budget, independent board
  of directors/advisory board
• Ensures that Clubhouse is the part of the broader
  community not subsumed by a larger agency

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Traditional rehab vs. Clubhouse model

• Day treatment
• Staff directed, and patients have little choice
  or control relative to activities
• Medically oriented
• Emphasis is on deficits
• Goals are set by treatment team

• Clubhouse
• Members and staff work together to determine
  activities
• Community oriented
• Emphasis is on strengths and abilities
• Members set their own goals, with staff
  assistance as needed

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Constraints

• Members unable to completely take responsibility
  for operation of Clubhouse, staff has bottom line
  responsibility
• Members not involved in any decisions/discussions
  involving confidentiality of other members

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Virginia Brain Injury Clubhouses

• 7 in the state of Virginia
• The Mill House in Richmond, High Street in
  Charlottesville, ADAPT in Alexandria, Westwood in
  Fredericksburg, Denbigh House in Newport News,
  Phoenix Star in Roanoke, Virginia Beach clubhouse

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The Mill House

• Opened in 1999, Serves the Richmond Metro area
• FT program open M-F 900-330
• 35-40 active members, daily attendance 18
• Have served over 275 survivors since opening
• 45 people on waiting list

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What makes Virginia unique?

• Virginia has 7 of the approximately 20 brain
  injury Clubhouse in the United States
• 6 of the 7 having ongoing state funding
• Clubhouses are identified as one of the three
  core services in Virginia service system
• Collaborative network established among these 7
  programs to provide ongoing training technical
  assistance, and uniformity of services

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How Virginia has become a leader?

• Advocacy, Advocacy, Advocacy!
• State agency leadership, strong state BIA
  affiliate, strong provider network that work
  closely together
• Sound programs that closely adhere to Clubhouse
  philosophy

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How clubhouses help our state

• One of the primary work functions within a
  Clubhouse is advocacy, both self advocacy for
  individual members and collective advocacy for
  brain injury
• Serve as showplaces for the community and
  leaders

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Mill House at the General Assembly
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Services Available at the Clubhouse

• Services utilized in Clubhouse model
  programsfull array of community based services
• -focus is on EMPLOYMENT and independent living
  skills, based on skills learned in the work
  ordered day
• -service constraints due to funding issues for
  most brain injury clubhouses

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Work Defines WHO we are, WHAT we can become,
HOW we will lead a self-determined life
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Employment Post-TBI

• 39 w/severe, 77 those with moderate injury and
  80 of those with mild injury return to work
  within 2 years. Dikmen, et al. 1994

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Employment difficulties and BI

• Combination of cognitive, physical, and emotional
  deficits resulting from TBI
• Cognitive and emotional deficits are often unseen
  by others and pervasive
• Lack of awareness of deficits and corresponding
  knowledge on how to compensate for deficits

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Why clubhouse services are so effective with BI
and employment

• Vocational focus of clubhouses
• -work ordered day
• Long term comprehensive nature of services
• Close relationships between members and staff

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Work Units The Heart of the Clubhouse

• Communications Unit
• Bi-monthly newsletter/e-newsletter
• Data Collection/Attendance
• Receptionist
• Research
• Health and Safety
• Fundraising
• Advocacy

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Answering the phone
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Working on the Computer
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Work Units The Heart of the Clubhouse

• Kitchen Unit/Maintenance Unit
• Menu Planning
• Shopping
• Meal Preparation
• Fee Collection and Budgeting
• Serving and Clean-up
• Routine upkeep of clubhouse and grounds
• Snack bar

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Preparing Lunch in the Kitchen
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• Kitchen Unit Garden

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Vocational Services

• Development of appropriate work skills and
  behaviors
• Group and Individual Volunteer Work Experiences
• Vocational Assessment and Training (EDS)
• Tranistional, Supported, and Independent
  Employment

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Member Volunteer Project
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Employee Development Services

• 30-90 day formal vocational evaluation and
  training
• 1st 30 days is a highly structured multi-modal
  assessment of a member current work readiness
• Subsequent 30-60 days is specific training on
  identified issues
• Determines members future vocational services

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A Clubhouses role in the VR process

• Clubhouse staff often have most up to date and
  complete knowledge of a members work related
  strengths and barriers
• Ideal scenario has Clubhouse staff in
  collaborative team with VR counselor and job
  coach
• Important that member remain active in clubhouse
  after getting employment

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Non Vocational Services

• Case Management
• Individualized Service Planning
• Assistance with Independent Living and Life
  skills
• Social Program
• In House educational programs
• Supportive Networks of Peers

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Reestablishing Relationships
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Social Program
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Another Social Program
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Integrating with other services

• Clubhouse typically becomes the hub of the
  treatment team
• Clubhouse staff typically organize and lead team
  meetings, although all meetings are done in a
  collaborative fashion.
• Clubhouse often becomes the face of brain injury
  for a community

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Why Clubhouses are so successful

• Empowering philosophy
• Focus on work/employment
• Comprehensive and long term nature of services
• Clubhouse is its own community and becomes part
  of the overall community

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Outcomes for Members

• Ideal outcomes center around employment,
  community integration and independent living
  skills
• Very few outcomes measures available that
  accurately reflect what we do
• Quality of Life outcomes

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Quality of Life

• Clubhouse atmosphere promotes many quality of
  life changes
• Feeling wanted
• Participating in meaningful work
• Making friends
• Getting out of the house and breaking the
  watching TV all day mode

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Member Perspective

• Debras story

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Benefits of the Program

• Improved work skills and behaviors
• Increased community integration
• Improved quality of life
• Improved social functioning
• Increased endurance wellness
• Improved access to other support services
• Improved coordination of services
• Increased confidence and self esteem

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New Outcomes Initiatives

• Multi Clubhouse research project being
  implemented to develop an outcome measure for
  Brain Injury Clubhouses
• VA Clubhouses all must report standardized
  outcomes to Department of Rehab. Services
• CARF accreditation (Commission on Accreditation
  of Rehabilitation Facilities) requires outcome
  measures, performance improvement and
  satisfaction surveys

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Challenges and Opportunities

• Brain Injury Clubhouses continue to receive a lot
  of attention within the brain injury community
  due to their current success and future
  opportunities
• Clubhouses are a COST EFFECTIVE means of
  providing LIFE LONG CARE!

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Cost of a Clubhouse

• Most Clubhouses operate at 275,000 per year
• Cost per day varies - 60 in Chicago
• Serve an average 20 members per day
• Active membership 50-70

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Program Funding Sources

• TBI Medicaid Waiver pays for day habilitation
  43-80 per day depending on State
• Private pay - 1 to 150, sliding scale
• Scholarships
• Workers Compensation
• State Vocational Rehabilitation

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Challenges of Starting a Clubhouse

• Funding, Funding, Funding
• Transportation
• Initial start-up funds require at least 125,000
• Fundraising
• Grants

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Future Directions

• Expanding services to our veterans
• Establishing our own Brain Injury Clubhouse
  standards
• Developing a training manual and training program
  for new Clubhouses
• Expanding the VCVTP program outside of Virginia

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New Directions Continued

• Expansion of existing Clubhouses to meet
  community needs
• Continue develop of additional services within
  Clubhouse
• -in house employment services
• -residential services

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The End!!!

• Thank you and Questions