September 26, 2001 Work Group Meeting Minutes
The William S. Cohen Community Center, Hallowell, Maine

Present:  Tonya Labbe, Christine Bartlett, Stuart Bratesman (Muskie staff), Alice Conway, Chandra Murphy, Deb Parker Wolfenden, Donna Lerman (Muskie staff), Helen Bailey, John Baillargeon, Stephanie Crystal, Margaret Forbes, Kathryn Kazenski, Jonathan Connick, Linda Jariz, Eileen Griffin (Muskie staff) Shirley Bastien, Myra Champagne, Peter Driscoll. 

Not Present:  Cary Gifford, Ron Welch, Lora Perry, Cynthia Sudheimer, Tom Bancroft, Drew Bolduc, John Shattuck, Nat Hussey, Tracy Piantoni, Jane Gallivan.

Helen Bailey chaired the meeting.  Donna Lerman facilitated the meeting.

1. Check-in and Roll Call
Members present introduced themselves.  Two new Work Group members attended for the first time.  Shirley Bastien is standing in for Eileen Lonsdale and represents the Long Term Care Steering Committee, replacing Debbie Williams.  Myra Champagne was named as a consumer representative by the Brain Injury Association.

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 August 22 meeting minutes were approved without revisions.

4.  Report from Workforce Development Subgroup
No members of the Workforce Development Sub-Group were present for the discussion of the revisions to their report.  Stuart reported on some of the changes that were made:

• a section on consumer-direction was added;

•  paragraphs relating to the rate of payment were deleted; sentences inserted relating to increasing wages;

•  references to pending state legislation were added; and

• a reference to International Learning Exchange was added.

Work Group members discussed the report.  Stephanie expressed her concern that increasing the professional requirements for direct care work might do more harm than good.  Higher educational requirements would be a barrier to people entering the field, reducing the number of people available to hire.  It would also be a barrier to family members, friends and relatives that might want to serve as a personal assistant.  In addition, many people with training come with preconceived ideas about what a person needs, rather than letting the person decide what he or she needs.  Margaret suggested focusing on competencies rather than educational requirements.  Members pointed out that many services are provided by family members or providers hired directly by the consumer and that educational requirements would make it impossible for these less formal relationships.  Stuart explained that members of the Workforce Development Sub-Group felt that increasing educational requirements would increase professional standing, and attract more people to chose direct care work as a long-term career.  Christine Bartlett suggested that it does not have to be mutually exclusive; that educational requirements might be appropriate for some professions and that skills competency requirements might be appropriate for other professions.

Peter asked that the new section related to Consumer Direction be revised to specifically include mental health services, in addition to other services.  Margaret asked that the report be revised to describe the impact that provider shortages have on peoples’ lives.  Deb suggested that the Sub-Group look at how Rhode Island used Medicaid funds to pay for health insurance and child care providers.  Chandra asked whether the Sub-Group had addressed transportation needs and the impact on a person’s ability to take a job as a direct care worker.  The question of reimbursement for travel was also raised.

Stuart agreed to bring the Work Group’s feedback back to the Workforce Development Sub-Group so that it could propose a revision.

5.  Process Check
Donna reported on her findings from the Process Check.  She explained that she called Work Group members to find out how they were experiencing Work Group meetings.  (Donna was not able to reach everyone, but plans to.)  She discussed her findings:

What’s valuable.  Members felt that the Work Group had experienced, knowledgeable consumer representatives; that working in small groups was effective; that state staff and consumer representatives were working together toward the same goal and that it was good to have the same information on the same page; that Work Group members were a good resource and helped to raise each others awareness.

Pace.  While some members felt the process was going too slowly, others felt that it was going to fast.  Some members felt they needed more time to understand, so that they could make good decisions; members discussed that people in other states said the planning process went by too quickly and opportunities were missed; Chris Zukas-Lessard mentioned that the Public Communications Team had decided that December would not be a good time for public comment and thought it would be better to push it back to the spring time.  It was agreed that the Work Group would “turn the heat down, but keep the pot on the stove.” 

Connection with Olmstead/purpose.  Members discussed the fact that many did not feel connected with the purpose of the Work Group and with the Olmstead decision.  Margaret noted that we had forgotten the definitions.  Kathryn noted that the discussion around the Workforce Development Sub-Group’s report was a good example of the Work Group’s unity.  Peter reported that, as a new member, he felt awash in detail, that he did not understand how his participation fit in and that he wanted to make sure he was not involved in a process that was not going to change anything.  Chandra said she did not understand what her role was and whether she had anything to contribute.  It was agreed that the agenda for each meeting should include a report to the full Work Group on the activities of any sub-group or the Steering Committee.  Members also agreed that, at the next meeting, members would bring informational materials on the organization they represent; we should review at every meeting what we have accomplished so far and put it in context of the Work Group’s mission; we should thank people for coming;  at the next meeting Work Group members should be prepared to tell why you are here and how where you work and your experiences will influence your thinking. 

Participation.  Donna discussed that there is a perception that some Work Group members do not feel comfortable speaking because state representatives are there and that other Work Group members do not feel comfortable speaking because they are state representatives and feel judged.  Members discussed the role of state staff and when and how they should weigh in on modifying recommendations to the plan.  Linda Jariz reported that as a new member trying to understand her role, she was told that she is supposed to represent the interest of her department.  She said that is very complicated because she represents a very complex department (covering mental health, mental retardation and substance abuse).  She said it was important for her to have enough time to make sure she was representing the perspective of her department since it did not serve the Work Group’s purpose to produce a plan that was unacceptable to her department.  The Work Group discussed that, while the plan should be realistic, the vision of the plan should not be limited to what is doable.

Other.  Members requested more microphones.  Donna said she would work on putting issues in the “Parking Lost” so that they don’t get lost.  She said she would also work more on making the connection with purpose and Olmstead.

6. Announcements
The following announcements were made:

• Peter announced that Patricia Keegan would be speaking on Recovery on October 10 from 2:00 to 4:00 and about the Cemetery Project from 7:00 to 9:00.  These talks will be in the Luther-Bonney building at the University of Southern Maine, Portland campus. 

• Eileen announced that Drew Bolduc asked to be on the agenda in October to discuss the needs assessment survey for Project Lincs.  Members requested that background materials be mailed out in advance.

• Margaret announced that Advisory Committee (ATAC) for RTP in Portland, was expanding its advisory role to airlines, boats, etc., and was being looked at a model by the Department of Transportation.

• Margaret announced that a self-advocacy group met with representatives from Vocational Rehabilitation and BDS to talk about why people did not have jobs after leaving high school.  She said that they learned that the State is unable to report on what services people are getting.

• Helen reported that federal court in Maine had recently ruled that Maine’s constitutional ban on voting for persons under guardianship was illegal under federal law.  The court based its decision on the U.S. Constitution, § 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA).  Helen reported that the Attorney General was asking the court to revise its decision so that it does not say whether or not Title II of the ADA applies to states.  If the judge does not agree, there is concern the State will appeal to a higher court.  Helen said that if a higher court or the U.S. Supreme Court rules that Title II does not apply to states than the Olmstead decision will not be legally enforceable.

• Deb reported that the Developmental Disability Council has published a fact sheet on its 5-year plan and that the Work Group’s plan should be coordinated with it.

7. Data
Christine Bartlett reported out on the discussion regarding the kind of data needed for the Work Group’s plan.  She said the drafting group had spent a lot of time discussing the difficulties in collecting data that was meaningful.  She suggested that the issue be discussed more at the next meeting and that Work Group members have copies of the grids that were being considered. 

Stephanie and Margaret both raised points that the Work Group should be influencing the design of the Departmental and other state agency data collection systems, so that those systems collect the information needed:

• to build a case for expanding services in the right areas;

• to learn how many state dollars are being spent on out-of-state care; and

• collect the information needed to monitor and manage the administration of the State's Olmstead Plan over time. 

Helen pointed out that given the nature of the Supreme Court's ruling, the most important data to collect is data on waiting lists for services that enhance or promote living in the most integrated setting.

It was agreed that we should e-mail all of the Department representatives to ask them to report back to next Work Group meeting: 

• What data is being collected by your Department and by the agencies and bureaus within your Department?  This may require you to contact other bureaus within your Department in order to get the necessary information.

• How does your Department collect and record data on waiting lists for those services necessary to enhance living in the most integrated setting?  What information does your Department lack on waiting lists?  Does your Department face legal or other limits on the disclosure of waiting list data?

• What data collection limitations should we be aware of?  (Example:  While the Education Department collects information on waiting lists, at present, there is no way to determine the amount of duplication between different waiting lists.

It was agreed that all Work Group members need to be prepared to discuss at next month's meeting what data and information should be collected by the State's information and be prepared to explain why that data is germane to the Work Group's central purpose.

8. Subgroup Activity
The Work Group did not have time for sub-group activities at this meeting.

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

10. Next Meeting
Agenda items for the October meeting include:  data; acceptance of Workforce Development sub-group draft, a report from Drew Bolduc on a recent needs assessment survey, and sub-group activities.  The September meeting is scheduled for Wednesday, October 24 from 1:00-to-4:00pm at the Cohen Center.  Ron Welch is the chair of this meeting.