Community Living Coalition - Minutes

May 12, 2006 Noon – 2PM                       

Burnaby Association for Community Inclusion

        Co-Chairs: Carol Stinson, Gerry Juzenas

1.                Introductions – People introduced themselves

2.                Agenda  - additions, etc – two items added – Imagine Conference at 1:30pm, Richard would like discussion of advocacy and CLBC.

3.                Minutes of last meeting:

a.    Any changes? None

b.    Items brought forward:

                                                             i.      Advanced Care Directives, Gregg Schiller: Gregg provided update – the legislation has been tabled for the summer but could be brought back in the same form in the fall.  The primary issue is the “ADVANCED DIRECTIVES” section of the legislation.  The other reforms are OK with the community, but the ADVANCED HEALTH CARE DIRECTIVES are bad for people with disabilities.  The problem is that Advanced Directives will probably trump Representation Agreements, and people’s wishes as expressed by their well-organized representation agreement can be ignored due to hastily completed Advanced Health Care Directives presented on intake at an emergency ward.  Advanced Directives are filled out and kept on file and can be used at some later date, without any consultation with family or the representation agreement.  Ongoing advocacy is required – the Representation Agreement Resource Centre will be forwarding another template for a letter to outline our concerns to the Premier and Cabinet. 

                                                          ii.      Committee reports: Goals and Communication, Carol Stinson: Carol circulated a report from the Goals and Name Committee, CLC.  Proposed leaving the vision or primary goal as: The coalition (or some other name) is an open and inclusive gathering of people and organizations dedicated to empowering individuals and families to make decisions about how they lead their lives in the community.  

1.    Discussion: Is access to resources being left out as the primary issue facing individuals and families?  Perhaps a comment on: These dedicated folks and organizations are committed to People with Disabilities and Families having a fundamental right to community inclusion and the support necessary to achieve that inclusion. 

2.    Rather than “vision statement”, say “Who we are”

3.    Include empowerment for individuals and families.

                                                        iii.      What we Do:

1.    Welcoming

2.    Communicating

3.    Monitoring

4.    Advocating (for our communal vision that all people with disabilities have the right to full community inclusion)

                                                        iv.      Name: Add Advocacy to the name – should still include community living for consistency’s sake…

1.    Alliance of Advocates for Community Inclusion AACI

2.    Alliance for Community Inclusion – ACI

3.    Advocates for Community Inclusion - ACI

4.    Alliance for Community Living, Advocacy, Inclusion and eMpowerment.  ACLAIM

5.    Voice of Community Advocacy for Living / Legislation - VOCAL

6. Community Alliance AIM - Advocacy, Inclusion, eMpowerment

We will send out an email to the membership asking for their opinions on the choices for a new name.

                                                           v.      Correspondence: (These items were tabled to next meeting).

1.    MCFD Minister Stan Hagen

2.    Board of CLBC

4.                MINUTES REVISED: Institutional Legacy Trust Fund: UPDATE FROM THE INSTITUTIONAL LEGACY TRUST ADVISORY COMMITEE -   Gregg Schiller provided an informal update.  The advisory Committee of the Institutional Legacy Trust Fund has announced that the funds will be equally disbursed among all remaining survivors who have lived at Woodlands, Tranquille, Glendale or Endicott Centre.  The prudent estimate of the funds to be disbursed to survivors is approximately $400 per person. The list of survivors is being compiled and checked.  The hope is that the list will be confirmed by the middle of the summer and that cheques could begin to be issued in the fall.  The funds will not be counted as income by Disability Benefits – Ministry of Employment and Income Assistance.  There will probably be problems with some folks in ensuring that this rule is applied consistently.  There is concern that people whose finances are managed by the public trustee will not be encouraged to use the funds for their quality of life.  See Public Update from Advisory Committee - Institutional Legacy Trust Fund May 2006

a.    Implications of Public Trustee Involvement: When people were admitted to Woodlands, their families were required to sign over guardianship to the public trustee.  Now that abuses at Woodlands have been exposed, the lack of responsibility on behalf of the public trustee to be protecting the residents of Woodlands has also been exposed. 

b.    Write a letter to the advisory committee about the risk to folks whose funds are managed by the Public Trustee.  The funds will remain inaccessible and will be dissolved away by management fees.  How will people be made aware that they have received the funds?  How will they know they can choose how the funds will be used?

c.     Secondary issue is to explain to individuals and families the process for removing the Public Trustee as the manager of the person’s funds.

5.                Children’s Services:  Implications of the cancelling of the Children’s Agreement and some services staying permanently with CLBC? Liz Barnett / Carol Stinson:

a.    Memorandum of Agreement in June 2005: Services would move to CLBC for one year – July 2005 to June 2006.  In July 2006, some services would move back to MCFD.  In March 2006, MCFD and CLBC announced that the agreement had been cancelled.  Announced reason was that it was too confusing to move services again.  No changes to staffing – MCFD workers staying in MCFD.  Still lots of questions and few answers yet. 

b.    Autism funding is with CLBC.  0-6 services also going to be provided by CLBC.  There is not clarity yet on these issues.

c.     Primary Issue: There needs to be clarity – CLBC and MCFD are providing many different messages on where services will be provided…

d.    Issues for families of Children with Autism:

                                                             i.      Access: Will IQ assessment be required? On Intake? At age of 6 years?

                                                          ii.      How does the initial mandate and structure of CLBC need to be shifted with this change in population served?

                                                        iii.      Will CLBC fund ABA therapy – a medical intervention?

                                                        iv.      How will funding decisions / allocation of resources be made across such a diverse population?

                                                           v.      Community Councils – Jule Hopkins is a consultant for CLBC drafting structure and mandate of community councils.

                                                        vi.      Intent of combining children’s services at CLBC was to remove the black hole of services for those children turning 19 years old. 

                                                      vii.      Apparently there is also a new memorandum of understanding being developed to clarify which services will be delivered in which organization.

                                                   viii.      If there are new consultations being conducted, how do we make sure everyone gets included in discussions?

                                                        ix.      Autism groups need to be included in discussions for two reasons: Currently have unique access to funding, and have risk of IQ screening for services.

                                                           x.      Systems should not be established that pit one family or group against another. 

                                 e.      The strength of today’s meeting was the opportunity to hear four people say they had been told four different things regarding children’s services.  ACTION: We need to ask for clarification and improved communication.

6.                Advocacy with CLBC: CLBC is dependent upon government.  They are responsible for managing a budget delegated from government.  The community still needs to advocate to the Minister and to their MLA’s about support for community living.  People have been getting the run-around- meet with CLBC and told to talk to the Minister... Meet with the Minister and told to talk to CLBC...

a.    CLBC prepares a budget proposal to Treasury Board.  We need to ensure CLBC understands the needs of individuals and families for services.

b.     Community needs to ensure MLA's and Treasury Board understand the needs of individuals and families for services.

c.  Once CLBC gets its annual funding, we can advocate to CLBC on how that funding is distributed.  For additional funding, we need to advocate to Minister, Treasury Board, Premier.

7.                Group Home Review – update Richard Faucher - renamed as Residential Options Review now – CLBC creating a two year project to ensure folks in residential services understand the range of residential options and have the opportunity to make an informed choice.  First target of review is those folks living in group homes.  Most individuals in group homes run by BCACL member agencies have been consulted over the past three years during the restructuring processes.  CLBC says that less than half of the people in the province served residentially are in BCACL member group homes though.  Many other folks live in home not connected to BCACL.   Residential Options review will cover all individuals in group homes.  Currently, CLBC is looking for someone to take on this project for the next two years.

8.                Imagine Conference -  Innovations Series – two presentations in June…  More information on website: http://www.imagineconference.com/2006/explorations.html

Pat Fratangelo - from New York 

June 12th - 9:00 AM to 4:00 PM Abbotsford

June 13th - 9:00 AM to 4:00 PM Burnaby

         Deb Rouget - from Melbourne, Australia 

June 20th - 9:00 AM to 4:00 PM Abbotsford

June 21st - 9:00 AM to 4:00 PM Burnaby

9. Agenda Items for Next Meeting:

a.    Review and choose name options

b.    Approve final draft of Who we are and What we do

c.     Group Home Review 

d.    Individualized Funding – how to do it right

e.    Legislation for Community Living

10. Adjourn at 2:55pm