October 24, 2001 Work Group Meeting Minutes
The William S. Cohen Community Center, Hallowell, Maine

Present:  Nat Hussey, Drew Bolduc, Cary Gifford, Alice Conway, Tom Bancroft, Chris Zukas-Lessard, Stuart Bratesman (Muskie staff), John Baillargeon, Deb Parker Wolfenden, Donna Lerman, Ron Welch, Tonya Labbe, Christine Bartlett, Stephanie Crystal, Margaret Forbes, Elise Scala (Muskie staff, visiting), Helen Bailey, Linda Jariz, Jonathan Connick, Shirley Bastien, Eileen Griffin (Muskie staff), Kathryn Kazenski, Myra Champagne, Peter Driscoll

Not Present: Chandra Murphy, Lora Perry, Cynthia Sudheimer, John Shattuck, Tracy Piantoni, Jane Gallivan.

Ron Welch chaired the meeting.  Donna Lerman facilitated the meeting.

1. Check-in and Roll Call
Work Group members were invited to talk about themselves and explain how the organization they represent influences their role.  Stephanie Crystal represents the State-wide Independent Living Council (SILC), which is an advisory council providing guidance to state agencies and others on independent living.  Margaret Forbes also represents the SILC.  Margaret said she brings her experience as a person with multiple disabilities to the Work Group.  Elise Scala introduced herself as Muskie staff who will be working on the Quality Choices grant activities and was visiting the Work Group meeting as part of her orientation to her work.  Helen Bailey represents the Disability Rights Center, which is a federally funded legal advocacy organization.  Linda Jariz represents the Department of Behavioral and Developmental Disabilities (formerly the Department of Mental Health, Mental Retardation and Substance Abuse Services).  Jonathan Connick is present as an advocate for the deaf community, for people who are hard of hearing and for people who become deaf late in life.  Shirley Bastien represents the Long Term Care Steering Committee and is there to offer the consumer perspective on resource allocation, policymaking, etc.  Myra Champagne represents the Brain Injury Association.  Peter Driscoll is the director of Amistad, which is a social club for persons with mental illness and others.  Amistad is a consumer run club, where the consumers are responsible for hiring and evaluating staff.  It is built on recovery and wellness and is a welcoming community open to all people.  Peter reports that Amistad offers a daily lunch for 90¢, so if Work Group members are in Portland they should stop in.  Drew Bolduc is the coordinator of outreach and public policy at the Maine Parent Federation.  Cary Gifford is a drug and alcohol counselor and represents people with drug addiction.  Alice Conway represents the Developmental Disability Council.  Tom Bancroft represents the Bureau of Child and Family Services which oversees the foster care system.  Chris Zukas-Lessard represents the Bureau of Medical Services, which is the Medicaid agency and does licensing.  Stuart Bratesman is staff from the Muskie School and has dyslexia.  John Baillargeon represents the Bureau of Elder and Adult Services.  Deb Parker Wolfenden is an independent contractor with the Department of Education.  She is representing the Maine CITE project on the Work Group.  She says that assistive technology can be the “great equalizer” and that all persons who would benefit from assistive technology should have access to it.  Donna Lerman from the Muskie School is the facilitator.  Ron Welch said he was named to the Work Group as a person who experiences a mental illness.  He also is the director of the Maine Association of Mental Health Services.  Nat Hussey represents the Department of Corrections, where he is the equal employment opportunity coordinator.

2. Vision Statement
The Work Group read its vision statement:  “Together in community with equality in rights and dignity, in pursuit of happiness and fulfillment.”  The Group discussed whether it had reached final agreement on the vision statement.  The Group agreed that it would continue to read the vision statement at each meeting to focus its work and that any concerns can be raised at any future meeting.

3. Meeting Minutes
The September 26 meeting minutes were approved with revisions (clarifying Rhode Island program was directed at child care workers, not direct care workers).

4.  Reports

Public Communications Team.  Chris Zukas-Lessard reported on the activities of the Public Communications Team (PCT).  She reported that Harriet Schultz, a communications consultant, had done some research on how to reach “hard-to-reach” people and offered her findings to the Public Communications Team.  The PCT also watched the video “What About Lindsey?” to decide whether to use it as part of its public communications strategy.  Based on the discussion, the PCT decide to target its message to many different people.  One way of doing that would be to do presentations to the different advisory councils created by law.  The group was also considering whether to do small meetings around the State.  Also the group was exploring whether or not public television might do a program, possibly with some sort of video, that would also be a call-in program.  Margaret asked about the purpose of the public communications team.  Chris explained that when the Work Group finished its planning process, it would be putting it out for public comment and asking people if the Work Group got it right.  The PCT was created to develop a strategy for reaching people and then receiving comment.  Alice said she would follow-up with the PCT regarding the “What About Lindsey?” video, since the Developmental Disability Council, was working with public television to create a follow-up television program. 

Steering Committee.  Chris Zukas-Lessard reported that the Steering Committee report tied in closely with the next agenda item, which relates to the relationship between the Work Group and the Olmstead decision.  The Steering Committee discussion had focused on the discussion during the drafting session. 

Drafting Group. Chris Zukas-Lessard reported that the drafting meeting was a discussion about the relationship between the Olmstead decision and the Work Group and that it fit in under the next agenda item.

5.  Connection Between the Work Group's Mission and Olmstead
Chris said that at the last meeting, Donna’s process check had revealed that many people felt confused about the relationship of the Work Group’s mission to the Olmstead decision.  She said that she had revisited the original thinking about the Work Group’s mission.  In the beginning, Steering Committee members had viewed the Olmstead decision as an opportunity to develop a coherent vision for providing home and community based services.  She said the Work Group was asked to go beyond creating an “Olmstead plan,” to create a coherent vision for providing home and community services. 

The group discussed, at length, the question of whether they were creating a plan or a vision, and what impact it would have.  Stephanie Crystal asked whether the state representatives had authority to promise changes.  Chris said no, changes have to be approved by the Commissioners, the Governor, and the Legislature.  Helen Bailey asked how the State can have a vision for providing home and community services, without having an Olmstead plan.  Linda Jariz said that, in the experience of the Department of Behavioral and Developmental Services, the process of developing a vision has been very important to shaping the direction of the department.  Nat Hussey said that an Olmstead plan is the least that the Work Group is asked to do.  The Work Group is creating a plan that goes beyond Olmstead.  Eileen said she understood, from other conversations with Chris, that nothing had changed from what was always the understanding:  that the state representatives were not promising that they could deliver what the Work Group outlined in its plan and that the Work Group was developing a plan that measured the State’s performance relative to a vision, not relative to the Olmstead decision.  Chris confirmed that Eileen’s understanding was accurate.  Stephanie Crystal asked how many people in the room will be directly affected by implementation of a plan?  She said that to her, the plan is not just a vision, it will make the difference between having a sub-standard life or not.  Helen Bailey asked if the State is avoiding the “meat and potatoes” of making sure people are out of segregated settings and focusing only on the “dessert and champagne” of improving home and community services.  Eileen said she understood the Work Group was asked to address the “meat and potatoes” of integration and the most recent draft before the Drafting Group begins to address that.  Peter Driscoll asked that if the Work Group is developing a vision, then who is developing a plan?  And if we are developing a vision, will it reduce any waiting lists?  John Baillargeon said the commissioners want the Work Group to tell them how to do better.  Ron Welch asked what makes this different from business as usual.  He said that many members of the Work Group had participated in developing a vision and developing a vision is not enough.  Margaret Forbes said she would like the commissioners to submit a written statement of their intent to the Work Group.  Helen Bailey drew a diagram of the relationship between the Work Group and the Steering Committee, as well as the products produced by each.  The flowchart had the Work Group making recommendations on the kinds of services needed, and manner of delivery, defining the goal of inclusiveness.  This document would be submitted for public comment, revised and finalized and sent to the Steering Committee.  The Steering Committee would then take the recommendations, determine what the State can accept and implement, and then convert the Work Group’s recommendations into a Roadmap for achieving the vision of integration, translating the Work Group’s recommendations into actual practices of how to deliver services to people who do not have what they need and to provide them in the least restrictive environment.  After a break, the Work Group agreed to table this discussion until the Steering Committee had an opportunity to review and revise Helen’s flowchart for discussion at the next Work Group meeting.

6. Report from Drew Bolduc
Drew Bolduc asked to postpone his presentation until the next meeting, in light of the earlier conversation.\

7. Quality Choices
Eileen reported on the Quality Choices grant (formerly known as the Real Choices grant).  The State received $2.3 million to fund several activities.  The funded amount is $300,000 less than requested, so there will be some budget cuts, which means there will be some scaling back in the scope of the activities.  Eileen will bring more information about the grant activities and the Work Group’s role at the next meeting.  The grant will also fund staffing for the Work Group.  The new staff will be a Muskie employee, which means that the Muskie School will have to make the final hiring decision.  However, the input of Work Group members will be important.  It was agreed that two consumer and two state representatives would advise Muskie in the hiring process.  Stephanie Crystal agreed to be one of the consumer representatives.  It was agreed that Eileen would ask Alice Conway to be the second consumer representative, since she had also participated in drafting the Real Choices grant application.

8. Workforce Development Sub-group Report
The Work Group approved the adoption of the Work Force sub-group's document as a portion of the Community-Based Living Plan, but also requested four additional changes:

• At the top of page 3, "appropriate education, trained skills," should be changed to "appropriate training, skills"

• The ending of the same sentence should be changed to remove, "from a semi-skilled to a professional occupation commensurate with teaching, social work, or nursing," and to replace it with the idea that direct care work needs to be transformed into a career with better training, status, and respect without necessarily requiring professional status or college-level educational requirements.

• On page 5, near the end of the first paragraph of the section entitled, "V. Consumer-Directed Care Options," it should be made clear that the Medicaid waiver consumers who were surveyed were not the consumers who participate in the consumer directed waiver option.

• The first two paragraphs in the consumer-directed care section should be reorganized to improve the flow of ideas.

These changes will be submitted to the Work Group, but unless anyone wishes to raise the issue at the next Work Group meeting, they will be considered as already adopted and approved.

9. Data
It was agreed to table this agenda item, since state representatives had not yet submitted information about the type of data they collect.

10. Sub-group Activity
The Work Group did not have time for sub-group activities at this meeting.  Stuart and Eileen will be coordinating with the Coordination and Services Sub-Groups respectively.

11. Announcements
Cary Gifford raised his concern that no one from the Office of Substance Abuse was on the Work Group.  Linda Jariz said she would talk to Joanne Ogden to clarify OSA’s position on participating on the Work Group.

12. Drafting Meeting
A sign-up sheet was passed around for members to sign up for the drafting meeting scheduled for October 31, 1:00 to 3:00.

13. Next Meeting
Agenda items for the November meeting include:  continued discussion regarding the Work Group's product, a report from Drew Bolduc regarding the Link Maine project, availability of data, Quality Choices, and the Services and Coordination Sub-Group activities.  The November meeting is scheduled for Wednesday, November 28 from 1:00 to 4:00 p.m. at the Cohen Center.  Drew Bolduc is the chair of this meeting.