April 24, 2002 Work Group Meeting Minutes
The William S. Cohen Community Center, Hallowell, Maine

MORNING SESSION: Not held

AFTERNOON SESSION

Present:  Christine Bartlett, Stirling Kendall (Muskie staff), John Baillargeon, Chris Zukas-Lessard, Stephanie Crystal, Steve Hoad, Jonathan Connick, Chandra Murphy, Dixie Leavitt, Nat Hussey, Helen Bailey, Shirley Bastien, Peter Driscoll, Kathryn Kazenski, Eileen Griffin (Muskie staff), Danny Westcott (Muskie staff), Tonia Boterf (visitor), Harriet Schlutz (visitor), Lisa Marie Lindenschmidt (Muskie).

Not Present:  Cary Gifford, Tom Bancroft, Ron Welch, Tonya Labbe, Cynthia Sudheimer, Jane Gallivan, Alice Conway, Linda Jariz, Tom Bancroft,  John Shattuck, Deb Parker-Wolfenden, Myra Champagne, and Drew Bolduc.

The afternoon session began at noon with lunch. Stirling Kendall facilitated the meeting. There was no chair.

1.  Check-in and Roll Call
Danny introduced and welcomed Ted Miles and Gayle Felker of the Spring Point Media Center at Southern Maine Technical College.  They were invited to videotape the Work Group session and to interview Chandra Murphy, Steve Hoad, Stephanie Crystal and Kathryn Kazenski

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.

3.   Meeting Minutes
The Work Group approved the March 27, 2002 meeting minutes with minor revisions.

4.  Appointing New Work Group Members
Recently two Work Group members have taken new jobs and no longer represent the agencies and organizations that appointed them to the Work Group.  The Work Group discussed whether to ask the Department of Labor (DOL) and the Maine Parent Federation (MPF) to name replacements for John Shattuck and Drew Bolduc, respectively. The Work Group also discussed whether to invite Drew Bolduc to stay on as the parent of a consumer.  Some members expressed concern that newcomers would have difficulty catching up and wondered if replacements should be sought at this late date; others felt it impolite not to invite these organizations to name replacements.  Steve Hoad said that if new members commit to doing the reading, then they should make fine additions to the Work Group.  The Work Group decided to invite DOL and MPF to name replacements, and also to invite Drew Bolduc to stay on.  John declined because of job commitments.

5.  Work Group Recommendations
The Work Group reviewed the list of recommendations culled from the sub-group reports and the drafting process.  Members were asked to identify what was missing and to make sure the recommendations reflected the Work Group’s current thinking.  This list, including recommendations on the table or already adopted, was seen by some Work Group members for the first time.  The recommendations were read aloud to accommodate people with visual impairments.  On the whole, there were very few additions to the recommendations under the first eleven (of fourteen) categories. In these categories, the Work Group made a few suggestions for changes in tone and wording, and for consolidating ideas and reducing repetition. 

Under “Consumer Voice” one member urged greater emphasis on community education, and another recommended that the state hire a staff person for each region to support consumers who attend or sit on boards and committees.

The Work Group had the most to say about the recommendations under Accessible, Available Transportation; Accessible, Affordable Housing; and Jobs.  

Transportation. Several members urged the Group to throw out the recommendations under Transportation because they wouldn’t make a difference in community living.  Stephanie offered to develop a set of recommendations for transportation which she would email to Work Group members before the May 22^nd Work Group meeting. 

Housing.  The Work Group thought the recommendations were “lean, not tackling the essentials”, such as finding ways to increase housing stock and to address the new congregate housing dilemma (dispersed sites rather than integrated sites).

Jobs.  The Work Group wants, at a minimum, to expand the section to include language that speaks to the employment aspirations of people with disabilities; addresses system incentives and disincentives to work; supports trends to move people from sheltered and enclave models to more integrated employment settings; recognizes the growing importance of supporting people who wish to be self-employed; supports employment through assistive technology; provides further opportunities for higher education; and increases the availability of outreach by Vocational Rehabilitation counselors.  

To augment the list of recommendations for housing, transportation, and housing, Eileen offered to pull together the recommendations and ideas from last year’s SILC summit, focus groups and case studies and to share them with the Group at the next meeting.

6.  Transforming Worries
In January 2001, when the Work Group met for the SNOW analysis, members identified their worries about the work they were doing.  At today’s meeting, the Work Group discussed the positive statements that Eileen had transformed from the “Worries” and considered whether they would be appropriate material for an introduction to the summary of recommendations. Members who liked the statements said they provide a context and set a tone that supports the underlying recommendations. Others feared that the statements sounded so positive that no actual change would result. Because “passivity” has never gotten anything done in the disability world, another member recommended using more statements with action words.

The Work Group’s dialogue led to general discussion about the scope of the Group’s work and its purpose (i.e., to advocate for structural change or for incremental change or a combination of both).  The Group never really resolved this, Nat said.  He asked whether the positive statements were an attempt to show the collective intent of the Group.  Before moving on to the last item on the agenda, Christine asked the Group how it was going to resolve the issues of using the proposed statements and the larger question of introducing the plan. The Work Group agreed to email their suggestions for how to rework the statements to Eileen before the next meeting.

7.  Announcements
Kathryn Kazenski announced that her son, who had been diagnosed with end-stage renal disease, received a transplant in March and is doing well.  Had he not gotten the transplant, he would have needed the kind of services the Work Group’s been talking about. 

Steve Hoad announced that he is working pretty heavily on the inclusion of people with disabilities in the volunteer services programs in Maine: Americorps, Vista, and Senior Corp.  He asked for volunteers and for help from the Work Group to establish a “Disabilities Advisory Council” that will work with program directors and Maine’s Commission for Community Services.

Peter Driscoll said he is working with a group of people to locate the burial places of more than 3000 people who died while at AMHI.  He said it is “beyond belief” that so many people could have died at AMHI and that there are no records to indicate where they were buried.  In addition to what Peter has learned so far from the Department and from records of funeral homes (1911 to 1965), Christine Bartlett suggested that he check with the Division of Vital Statistics because all deaths and burials are supposed to have been recorded with them.

8.  Next Meeting
The May meeting at the Cohen Center is scheduled for Wednesday, May 22 from 10:00 am to noon for the Coordination Sub-Group, and from noon to 4:00 pm for the full Work Group. Lunch will be provided. Helen Bailey will chair this meeting.