Community Living Coalition Minutes

Co-Chairs: Carol Stinson, Gerry Juzenas

1. Introduction from Chair, Carol Stinson - Intention is to discuss role and vision for the Coalition going forward.
2. Attendees introduced themselves and spoke about their vision for the coalition.
   1. Carol said she received two responses from family members outside the lower mainland who said they valued the work of the coalition and feel it should continue with a focus on sharing information with people outside the Lower Mainland.
   2. Gerry asked people to remember plain language and reminded us of the ongoing participation of self advocates with the coalition.
   3. Ernie spoke about the original purpose of the coalition - self-advocates and families governing community living services and getting individualized funding as an option. 
   4. Mike spoke about the other initiatives taken on by the Coalition - Seniors workshop on the needs of aging families.
   5. Cliff feels the coalition should  continue as a vehicle for advocacy and information sharing.
   6. Donna valued the participation of self-advocates in the discussions.
   7. Cathy felt that there are many organizations out there not working together and that was a strength of the coalition.  The coalition needs to continue to build its awareness of the current issues facing individuals and families around the Province.
   8. Ron said he valued the ability of the coalition to bring people together to work with government.
   9. Susan (in a letter) She valued the work that had been done by the coalition and believes that the original goals have been met.  She would support a re-focussing of the group with new goals.
   10. Nellie feels the coalition should continue - families need a place to come together, feel comfortable, and express the problems they face and support they need. 
   11. Jacquie feels the coalition needs to continue to keep people informed from an independent viewpoint on how community governance, independent planning and individualized funding are progressing with CLBC.
   12. Sue feels great confidence in the coalition as a place where families can gather and get real information.  The work of the coalition is not done while there are still so many issues with the implementation of individualized funding. 
   13. Bob suggests that the coalition change its name to the Community Living Advocate and act as an independent watchdog over CLBC.  He read from CLBC's strategic plan - two key goals:
       1. People should be safe and healthy
       2. Individuals and families should make the key decisions in their lives.

       Need to have one organization that brings everyone together so that government cannot divide and conquer.  Need to have a "Ralph Nader" organization watch over CLBC.  There needs to be a legislative framework for community living services so that individuals have a right to service.  As well, the issue of appropriate supports to people with a dual diagnosis - with mental health needs as well - were a priority.  With Willow closed and the Provincial Assessment Centre having only 10 beds, where will people receive appropriate support?

   14. Laney reminded:  We came together with Vision and Power in 2001 as a coalition to influence government - lead the change rather than fight the change.  Over the past six months, the coalition has had far less influence.  It has been a value mainly as an information sharing vehicle.  We have attempted a number of times to "re-vision" and have not been successful in the past.  She is not sure what a new vision for the coalition would be.
   15. Patty said she valued participating in the coalition.
   16. Richard said that in the Interior, families are asking what avenues do they have to express concern about the direction of CLBC, in particular right now with the hiring of staff into new leadership positions.
   17. David said coalitions have a great challenge in that they are under-resourced in comparison to government, which has unlimited resources.  Many people and organizations need to be commended for the investment of time and resources in ensuring families.
       1. Independent and trusted voice
       2. Convening Force - brings people together
       3. Advocacy - keeping people together when faced with supreme challenges
       4. Monitoring - watchdog on CLBC and government.

       Three Important Roles:

       1. Leadership for change
       2. Support for Transformation
       3. Voice of the Community
   18. Brad supports the coalition as it supports community and families.
   19. Bryce feels to coalition needs to continue its role as watchdog on all the promises government has made - in particular around safeguards and the self-advocate council.  Need the bigger voice of the coalition to speak up - not just BCACL.
   20. Arlene feels the coalition still has a role as a monitor - feedback to government during implementation - keep the vision at the forefront.
   21. Michelle values the involvement of self-advocates in the coalition and wants to work toward a better world for all.
   22. Valerie is concerned about the need for ongoing advocacy - families are aging and cannot advocate for their sons and daughters.  Families have been told that all group homes will be closed.  Services are being eroded by the wage cuts, the staffing cuts and program changes.
   23. Liz is on the adult services transformation working group.  Feels the "coalition" is temporary by definition and that to move forward, we need a new purpose and name.  As a service provider, she values the opportunity to hear families and align with them.
   24. Richard says BACI has been involved in the coalition from the beginning and will continue to be involved in whatever the families feel needs to carry on in a supportive role.  He feels service providers are involved in a supportive way but have other avenues for addressing their own issues around funding and program changes.
   25. Jo says the coalition is a valuable tool for ensuring government hears what families want.   BC is leading the country in terms of closing large institutions and developing individualized funding.   CLBC needs to kept on track - smaller homes - 3 people should be maximum.  She thinks the coalition is unique in the way it brings families, service providers and self-advocates together in a very strong way. We are a threat to CLBC when we get together and speak clearly.
   26. Bev says families in the tri-cities area value the coalition as one of the only sources of information about changes in community living.  There is lots of work to do in terms of ensuring families' voices are heard at CLBC.  There needs to be a process for families to bring forward concerns.
   27. Wendy says the coalition should continue as a diverse group where everyone has a say.  Also, the coalition is a valuable resource to have in place for the next emergency.
   28. Angela says the coalition has been special in that it has welcomed everyone - self-advocates, families and service providers.  There is strength in numbers.
   29. Madeleine says she feels families definitely need a place to speak, that much of that work originally set out has been accomplished, but that some new organization may be able to continue to meet the needs of families.
3. Majority of attendees support an ongoing role for "the coalition". 
4. CLBC Working Groups:
   1. Adult Services Transformation Working Group: Diverse group of professionals, families, service providers, self advocates.  It is mostly a "presentation" from CLBC on what is happening, not an opportunity to lead or discuss or change what is happening.  It meets monthly.  There is regional representation from the CLBC / MCFD staff so another purpose of the meetings is bringing the CLBC staff up to speed.  Draft policy is presented, feedback presented.  With families and self-advocates present, it helps keep the presentations focused on the real world.  Are the discussions confidential or could the discussions be shared with the coalition so people are more aware of what is going on?
   2. Children's Services Transformation Working Group: Irregular meetings - children's services agreement still problematic as there are still arguments about the division of services.  As well, there has been little concrete discussion of policy. 
   3. Service Provider Working Group: no family representation, mostly presentations from CLBC with very little discussion. There have been discussions on benchmarking and monitoring tools.
5. CLBC Community Councils: Draft paper has been circulated.  Consultation is still being accepted.  Coalition will re-circulate the discussion paper to encourage feedback.  Past history of community councils has been mixed with MCFD.
   1.   http://www.communitylivingbc.ca/pdfs/community-council-position-paper_final2.pdf
6. Suggestions about Names:
   1. add Continuing to the name
   2. Community Living Advocate
   3. Community Living & Information Coalition - CLIC (or Collaboration)
   4. Next Steps: create a little working group to review the name and mandate and make a proposal to the next meeting.
      1. What formal structures are needed for the group? (Chairs, frequency of meetings, Decision-making, Communications)
      2. Volunteers: none came forward.  We'll update this information at  the next meeting.
      3. Suggestion: Coalition for Community Living
      4. Suggestion: Community Living Forum (formerly Community Living Coalition) - a place for families, self-advocates and service providers to share ideas, hopes, concerns and strategies.
   5. Everyone agreed that this topic could be tabled to the next Coalition meeting.
7. Updates:
   1. Roeher Institute - going broke - the community will lose a strong voice for research into the effectiveness of community supports.  People should advocate for ongoing funding from the federal government to continue this function.  With federal election in two weeks, it makes sense to wait til after the election to write on this issue.
   2. Attorney General - recent release about adult guardianship - looking for feedback / input on Advanced Care Directives.  Representation Agreements help us plan future health care but Advanced Care Directives put people with disabilities at great risk.  See BCACL's social policy statement on Advanced Directives for background.  BCACL and BACI have asked for an extended response timeline.  The request for feedback came out on December 23rd, 2005.
   3. Mental Health Supports for Community Living - old Willow Building at Woodlands is being demolished.  New program is called Provincial Assessment Centre - Willingdon and Canada Way - with a limit of 90 day stay maximum.  Old program had 25 beds - new program has funding for 15 beds.
   4. Funding for Community Living BC: There is a huge challenge facing the new organization... There may be funding for wage increases, but very little funding for new services - there are many people on waitlists desperately in need of services.
      1. Families and Individuals need to meet with their MLA's to express the need for additional funding.
      2. The biggest barrier to the success of CLBC will be funding.
   5. Motions from the Coalition:
      1. Move that the coalition writes a letter to the AG expressing our concern about the review of the adult guardianship legislation with particular emphasis on Advanced Care Directives and the profound implications these have for people with disabilities.  There are also concerns about changes that will weaken representation agreements by changing section 7 and section 9 agreements.  As well, we will express concern with the timeline for consultation. Moved, Seconded and CARRIED.
         1. See Copy of Coalition Letter Here
         2. See Copy of Representation Agreement Resource Centre Memo - Jan 15, 06
      2. The community Living Coalition is deeply concerned about the pending provincial budget for CLBC and urges all members to speak to their MLA's, the Minister of Finance and the Premier about the need for funding for new services and meeting the needs of folks on waitlists.  The coalition will use its communication resources (email, website, letters) to further this message. Moved, Seconded, Carried.
   6. Workshop at the Justice Institute on Genetics and its implications for people with disabilities. THIS HAS BEEN POSTPONED...
   7. For next meeting: Write a letter to the next federal government expressing concern about the reduction in transfer payments.
   8. Next Meeting: February 17, 2006 Noon to 2pm, at BACI - Large Education Room - Bring your own bag lunch.