IBICA

Meetings

Welcome: Matt Buckley, Executive Director, Mary Buckley Foundation

Clubhouse Updates

Side by Side Clubhouse, Atlanta, GA
Represented by Cindi Johnson and Greta Ann Hurt
Expanding and possibly starting a second clubhouse
Celebrating 10 years of operation this year

High Street Clubhouse, Charlottesville , VA
Represented by Leigh Wion
Recent CARF re-accreditation
Growing membership with recent number of referrals
Non-profit parent now in partnership with NeuroRestorative (re-branding of The Mentor Network)

Brooks Clubhouse, Jacksonville, FL
Represented by Kathy Martin, Eric Powell, David Asselta
Opened October ‘08
Brooks Foundation provided 100% of start up. 4000sq.ft. space and outdoor space
Revenue generated by sliding scale and grants
Training at Side by Side
Exercise at YMCA one day/week, each day starts with stretching

NeuroRestorative, Burlington, NJ
Represented by Antoine Brown
Opened 3 months ago.
Continue to unfold services
AACBIS training completed

Seattle BrainWorks, Seattle, WA
Represented by Mike, Erin
Clubhouse operated by non-profit company, Provail
Started in March
Clubhouse training at Side by Side. Learned a lot.
Moving from social orientation to work orientation. Av. 5-6 members/day

Gateway Clubhouse, Raleigh, NC
Represented by Rachel Schrect, Leslie Johnson (from parent organization, Community Workforce Solutions)
Haven’t opened doors yet.
Leslie has background in vocational evaluation
Worked with BIAV in NC to secure start up funding from the state
Signed lease last week, moving furniture next week

Denbigh House, Newport News, VA
Represented by Alex Watson
Achieved 5 year mark. 30 members
Members doing a wonderful job running the Clubhouse
Undergoing some transitions with new staff hires
New relationship with Social Work interns from Christopher Newport University

Beacon House, Virginia Beach, VA
Represented by Joann Mancuso and Abby Keen
Program of Mary Buckley Foundation
2 years old as a Clubhouse. Operated as a day program prior.
Staff at day program came over to Clubhouse
Spent week training at Cornerstone Clubhouse
Colleagues in Virginia assisted organization thru the process of operating a Clubhouse
40-45 members served over last 2 years. Currently 30 active members.
In process of becoming a vendor to Department of Rehabilitative Services to provide Employee Development Services

Cornerstone Clubhouse, London, Ontario, Canada
Represented by Deb Wilson-MacLeod
Our Director, Mary Catherine Anne passed away on July 28th.
Our new director, Brenda Campo, was unable to come. Brenda comes to Cornerstone from our auspice agency Dale Brain Injury
Kevin McGregor sends his greetings. He was unable to attend.
Cornerstone is expanding, however, 2 members passed away in the same month
Acquired more space on second floor. Looking at what to do with each room
There are a significant number of members who volunteer outside the Clubhouse.
Daily membership is 30-35 members. 160 active members
Expanded groups
ICCD training – hopefully get some members

Westwood Clubhouse, Fredericksburg VA & ADAPT Clubhouse, Alexandria, VA
Represented by Brian McCarthy & Chelsea Feist
5th year at IBICA
Both Clubhouses are running strong

Community Futures Foundation (The Mill House, Richmond, VA & Denbigh House, Newport News, VA)
Represented by Jason Young, President of IBICA
The Mill House has been in operation 11 years with40-45 active members
Lots of expansion with new space
Wait list of 1½ years
3 working units

Harvey Jacobs - “The Godfather”
Harvey has a new book going to print and should be available in 3 weeks. Available at Lash & Associates.

IBICA Business Meeting

How many Clubhouses call themselves a brain injury clubhouse? 25 clubhouses but 50 or so doing some or part of following standards.

Brief Update of past year’s accomplishments of the organization – Jason Young Completion of process for incorporation as a 501(c)3 organization completed. IBICA has been incorporated in Virginia and now has a separate bank account. At the 2009 Richmond meeting, IBICA took steps to become organizationally more formal in setting up an Executive Committee. The Executive Committee became the IBICA Board of Directors.
Jason Young, President
Matt Buckley, Treasurer
Leigh Wion, Secretary
2 At-Large members – Harvey Jacobs, Mary Catherine Anne

ICCD was tremendous resource in getting IBICA started – but that organization has been supporting mental health clubhouses for 60 years did not feel the organization could take on brain injury clubhouses under their umbrella. IBICA is a means to support one another and developing clubhouses in the United States (Seattle, North Carolina, Maryland, Nebraska, among others) and internationally ( Denmark, England, Ireland, and Norway)

As a function of the incorporation, IBICA is required to hold an Annual Meeting of its members. These proceedings will function as the 2010 Annual Meeting.

Nominations & Elections

Need to be a member of IBICA. Membership dues paid. Individual membership is $50 and $200 for organization membership. Each Clubhouse will have a vote. Membership statements will be sent out in the near future.

At this year’s meeting, 2 at large positions need to be filled. Harvey announced his resignation to the Executive Committee in prior communications. Harvey felt it is time to pass the torch since he is not involved in the day to day operation of a Clubhouse and it is an appropriate time for others to get involved in Executive Committee. The other At-Large Executive Committee position became vacant upon the passing of our beloved and revered Mary Catherine Anne.

Nominations for 2 At Large positions
Cindi Johnson accepted the nomination made by Jason Young
Nomination of Kevin McGregor from Cornerstone Clubhouse.

Discussion: Mary Catherine was a driving force of IBICA. It is important to IBICA to have the At Large position she held remain at Cornerstone Clubhouse.

Jason called for any additional nominees. None presented.

Motion to approve the slate of nominees as presented made by Harvey Jacobs, seconded by Kathy Martin. Call for the vote. Motion approved unanimously.

The terms of the officers of the Executive Committee (Jason, Matt, Leigh) are up next year. There was discussion that one officer would rotate off and assume an At-Large position.

Review of the Bylaws

The current set of bylaws needs revision. The Annual Meeting is stated to be in March and there is only one committee – the Executive Committee. The bylaws need to have additional working committees. An Education & Training Committee that would train new and developing clubhouses. Get these groups going on a holistic level – involved in community and fundraising. Cindi did fabulous job of putting first agenda together!! There are a lot of groups in development that could benefit from this training. Jason and Cindi delivered this training to Seattle Brainworks.

A Membership Committee to expand membership to non-members, update and maintain the website that came out of the Chicago meetings 2 years ago(please refer to the document in your packet provided by Community Clubhouse in Ohio for the website statistics.), updating and maintain the listserv, and assist the host clubhouse in the planning of the annual conference

Most of the committees are not time consuming! Not meant to be another full time job! Most of the work is done thru conference calls. Let’s not burn people out! Get other clubhouse staff & members involved.

The bylaws also need to include a mechanism for a strategic plan.

Motion to add a Membership and Education & Training committees into IBICA bylaws - made by Cindi Johnson, seconded by Matt Buckley.
Call for the vote. Motion carries unanimously. No abstentions.
Education & Training Committee Chair – Cindi Johnson
Membership Committee Co-Chairs – Brian McCarthy & Joann Mancuso

IBICA Clubhouse Standards Review Process

This process began 2 years ago in Chicago. Ralph Bilby of ICCD was involved in process of achieving consensus. 95% of ICCD standards were adopted as the IBICA standards with a couple of standards that are slightly different. (e.g. “mental illness” substitute “brain injury”) IBICA standards approved provisionally with further discussion around Standard #8 . Consensus was finally reached consensus in Richmond.

We want to set the process in place to review the standards on a regular basis as does ICCD. There needs to be a formal process developed to solicit input on the standards. The group came to consensus that we will a process in place to begin the official review of standards at next year’s meeting.

Harvey shared the thought of whether or not Standards Review should be a separate committee? Jason response that large committee would spread the work out among more members.

Motion is to leave standards as is and to set up a formal standards review process in 2012.

Discussion: Brian McCarthy asked if this is an issue that needs to be a breakout session all on its own next year. The group consensus was yes.

Made by Jason Young Seconded Kathy Martin
Call for the vote. Motion carries unanimously.

IBICA Recognition on the loss of Mary Catherine Anne

Jason acknowledged the generous Side by Side donation made to IBICA in memory of Mary Catherine. She was so influential in getting IBICA off the ground; a stalwart in standard development; and Cornerstone remains the only brain injury clubhouse with ICCD certification. Cornerstone has planned a celebration of Mary’s life for September 22nd.

Motion made by Brian McCarthy:
To establish The Mary Catherine Anne Scholarship for a member who has achieved excellence forwarding the IBICA standards that would allow 1 member from across IBICA clubhouses to attend IBICA meetings based on available funds. The criteria for selection would be made by Cornerstone members with final selection by the IBICA membership committee.
Harvey Jacobs amendment – based on available funds. Accepted
Jason Young amendment – Membership committee of IBICA would select member - Accepted

Seconded by Joann Mancuso. Call for the vote. Motion carries unanimously!

Deb Wilson-MacLeod will involve Cornerstone Clubhouse members in the development of the selection criteria.

Using Mary Catherine’s famous words….”that’s enough time on that, let’s move on”.

Committee Reports

Please refer to separate documents outlining the reports and plans for the Executive Committee, Education & Training Committee, and Membership Committee.

Discussion of Standard #27 - The Clubhouse has recreational and social programs during evenings and on weekends.

Discussion requested by Cindi Johnson because this has become an issue at Side by Side with members scheduling social activities during the work day or going out to a movie. In contrast to members of a mental health clubhouse who are at times socially isolated, most Side by Side members don’t need as much socialization because most live with families. Brian - from his TR background. Members can meet goal s through recreation and leisure. If ever any question, back to the standards. Falls on each of us individually to follow standards.
Erin – yoga as part of work ordered day. Activity that people like and bring people in. 1 outing/month
Joann – couple of times a year or typically is from the time period of 3-6:30
Deb- once a year. “Wellness group” stagger shifts to have clubhouse open on evenings. Saturday socials starting in October. Open on holidays, too.
Leigh – goes back to each member’s goals.
Jason – It’s a slippery slope of including recreational activities on a regular basis.
Regarding Holidays: Mary argued with ICCD certification around standard relating to Clubhouses being open on holidays. Most clubhouses put the option to the membership and it’s their decision whether or not to be open on holidays. People with brain injuries are not at high risk for hospitalization for holiday depression as much as a person with a mental illness.

Discussion on Clubhouse Outcomes

Cindi provided the background on this important issue. She had a conversation with Jessica DuPuy in Colorado (formerly of Community Futures Foundation in Richmond) because Jessica was meeting with an organization to talk about the development of a brain injury clubhouse. The organization wanted to know about how Clubhouse works. There isn’t a tool to measure outcomes in our industry. Cindi has been looking for someone to help us to develop someone to help us. Then there was a contact from Colleen McKay, University of Massachusetts Medical Center, Department of Psychiatry, Center for Mental Health Research, Center for Clubhouse Development because there is discussion of the development of brain injury clubhouses in Massachusetts.

Cindi has also had discussions with Shepherd Center in Atlanta. They are a hub of research in SCI/TBI and have a lot of NIDRR grants.

In 2007, Harvey wrote a NIDRR field research grant that was unfortunately rejected. Harvey is a self-employed and cannot afford the time involved in developing/writing these large grant proposals.

UMass is looking at pursuing NIDRR and VA funding. One consideration is whoever is doing the research is going to have overhead. A University setting typically has between 40 – 60% of the contract as overhead costs. Shepherd would likely be 15% in overhead

UMass is looking at pursuing NIDRR and VA funding. One consideration is whoever is doing the research is going to have overhead. A University setting typically has between 40 – 60% of the contract as overhead costs. Shepherd would likely be 15% in overhead

• UMass is looking at pursuing NIDRR and VA funding. One consideration is whoever is doing the research is going to have overhead. A University setting typically has between 40 – 60% of the contract as overhead costs. Shepherd would likely be 15% in overhead
• Quality of life
• Socialization
• vocational outcomes
• Effect on hospitalization or other services
• Reduction of caregiver burden
• Family cohesion
• Clubhouse impact on society and the clubhouse impact on members.

What tools are we using now?

• UCLA Loneliness scale & Mayo Portland Adaptability - used at Brooks Clubhouse
• Employability Rating Scale
• Supervisory Rating Scale – used at Side by Side

Jason added that we need to discuss is how to get Clubhouses to buy in to the process. The Virginia Clubhouses were part of a VCU CNI project.
Cindi asked if Colleen can look at all the data that we are already collecting. Harvey response was this would be “pilot data” and funders not looking at these as projects.

Conference call with Colleen McKay

Cindi facilitated the conference call with Colleen McKay. Cindi introduced the 12 Clubhouses represented from Canada & US and clarified that some are established clubhouse, some are new clubhouse, and some are still in the development stage.

Colleen shared her interest on this topic from an academic meeting where a neuropsychiatrist in the group discussed the issue of a person with a brain injury has been in staying in the ER for the last 3 weeks because there is no placement.

Coleen requested some additional information on how the clubhouse got started and how they’re funded and why are there so many in Virginia.

Virginia has had 5 years with Clubhouse receiving support with state general fund dollars. Clubhouses were incorporated into core service model for service provision to brain injury. Also have an extremely vocal, active advocacy network. When comparison of dollars given to other disability groups with the amount to support brain injury, the small amount dedicated to brain injury resonated with legislators. There is a nice relationship between Clubhouses and BIAV. The administrator in DRS is high on clubhouse model. Preserved priority of clubhouse as option for long term community based support. Six Virginia Clubhouses are operated by four different organizations. Community Futures Foundation (Mill House, Denbigh House) is a non-profit offering clubhouse and case management. Mary Buckley Foundation (Beacon House) is a non-profit offering clubhouse and day program. Brain Injury Services (ADAPT and Westwood Clubhouse)is a non-profit offering clubhouse and case management. Virginia NeuroCare (High Street Clubhouse) is a non-profit in partnership with a for profit offering clubhouse, DVBIC civilian site, and long term residential program.

There is no state funding from Georgia. Medicaid Waiver (Independent Care Waiver designed to serve people with significant physical disabilities) that serves 170 slots. Side by Side earned revenue is fee for service with biggest funder is workman’s compensation. The state mandates vocational rehab for catastrophic injuries. Side by Side is a vendor for voc rehab service which in Georgia is housed in Department of Labor. The remainder of revenue is fundraising/sliding scale. They started thru seed money from 2 rehab hospitals.

In Florida, the Clubhouse has a connection to Brooks Health Foundation. The foundation supports operational cost at about 60%. There is also a Medicaid waiver, vocational rehab, and sliding scale. They are not a standalone program but are a program of comprehensive rehab hospital.

New Jersey has a TBI fund( from registration of vehicles) and TBI waiver. One Clubhouse is affiliated with NeuroRestorative. Another is a standalone not for profit (Opportunity Project ) and the other is part of Moss Rehab Hospital in Philadelphia.

Washington has a TBI fund similar to Massachusetts. 1 Clubhouse open on pilot funds housed at a large non-profit DD provider.

In Canada, payment comes from Local Health Integrated Network funds to an auspice agency and then in turn funds clubhouse.

In North Carolina, the Raleigh location has secured initial funds are from state TBI funds. These are funds that can be accessed by individual or agency for state legislative funds. They will need to work on sustainable funding and are researching workman’s compensation, Department of Defense, Veteran’s Administration. Wake County, and maybe Medicaid waiver.

UMass is looking at VA project for services for veterans. Looking at a general study - what are the nuances between brain injury clubhouses.

What would you like to do across programs? 2 areas that we need to demonstrate - Impact on society & in reducing the cost of care. Additionally the benefit to the people and families we serve in the following areas:

• increased quality of life
• care giver burden
• social capital
• Vocational outcomes. What percentage of members have a goal of working make it whether it’s paid or volunteer. Identify the disincentives for working (Pending lawsuits over the injury, safety issues impact whether work is a goal or not). Work readiness is something else to look at.
• Quantify the cost effectiveness and decreasing the impact to other systems.

Discussion of the scales in use current that haven’t been able to show significant changes over time. UCLA Loneliness, Supervisory Rating Scale, Employability Rating Scale, and Mayo Portland. What’s the time – every 3 months, every 6 months, every year? We see changes in quality of life over years.

Clarification on improvements in quality of life – what is the impact dependant on the severity of injury? People with mild brain injury have a huge perception of a loss of quality of life and clubhouse is place where accepted. One is helping others who aren’t expected to perform at higher level decrease the complaints of symptoms. With those that have more severe injuries there is an improvement in quality of life - more productive outside the home , families seeing a huge benefit.

Data –showing that reducing costs, specific tools that we feel we need? Need vocational outcome data. No tools that we’ve all found. All the research is focused on early stages of recovery (1-3 years). Tools used by clubhouse staff, members, and family members. Concern is that we can’t fit that in to our clubhouses in current staffing patterns and work ordered day. If we take something on, we need help with it. We would build in some research dollars – interviewers to come in to collect the data or paying staff to collect the data.

Colleen ICCD survey. Cindi tried but didn’t have that many hours. Electronic database option now. Collecting outcome at program level.

Virginia collects data in the same way and meet as a coalition to standardize systems. The report from data collection is online. Jason accepted responsibility to talk to state agency about how we collect data in Virginia and permission to view data.

Could someone find a common intersection of all the data we’re collecting?

Plans to move forward on Outcomes:

• Those in attendance achieved consensus that the cost of overhead is not a significant prohibitive factor as long as we are able to achieve our goal of demonstrating that clubhouse works.
• We all want to be a collaborative partner, but, logistically wouldn’t be able to start with all clubhouses.
• Can contact Colleen at the e-mail address below with further comments/suggestions Colleen.mckay@umassmed.edu
• Cindi will post on listserv updates as they become available.

CARF/IBICA

IBICA is years away from creating this partnership with CARF. Harvey was talking with Christine O’Donnell at CARF (Medical Standards) brain injury subgroup. The consensus of those in attendance is that brain injury clubhouses fit well under community integration standards and employment standards even though Ms. O’Donnell states there is flexibility in the medical standards to add non-medical standards. Prior to this, we want to put a process in place how clubhouses are following IBICA standards.

For consideration, Cindi suggested for CARF accredited clubhouse directors becoming surveyors and how would we include members as “faculty” in that process? We also need to determine Ms. O’Donnell’s counterpart in Employment and Community based standards.

Host Location for 2011

Consensus was reached to hold the 2011 meetings in Virginia Beach for a full 2 days.

There will be an additional evaluation sent to participating clubhouses to evaluate this year’s meetings and to suggest changes for next year’s meetings.

There would be the option of visiting both Denbigh House and Beacon House for new clubhouses to see the work day of one established clubhouse and a growing clubhouse. The monthly conference calls in the planning stages by the Education & Training Committee will assist new clubhouses in development.

We will review the fee for the conference to allow the host clubhouse the opportunity to stay at the conference hotel.

Your packet contains an old membership form. Matt will mail out new form. Consider making a personal contribution to IBICA. We are a 501(c)3 charitable organization! Make check out to IBICA!

Joann will determine dates around this time next year not in conflict with Jewish holiday and send out for consideration. Matt reported there is a possibility of a sponsor.