August 23, 2000 Work Group Meeting Minutes
The Senator, Augusta, Maine

Present: Cynthia Sudheimer, Stuart Bratesman (staff, Muskie), Eileen Griffin (staff, Muskie), Stephanie Crystal (alternate with Margaret Forbes), Larry Glantz (staff, Muskie), Jane Gallivan, Christine Bartlett (chair), Donna Lerman (Muskie), Tonya Labbe, Lora Perry, Helen Bailey, John Shattuck, Nat Hussey, Alice Conway, Dixie Leavitt (staff, Speaking Up for Us), Chandra Murphy, Chris Zukas-Lessard, Jane O’Loughlin French, Michael Arenstam, Ron Welch, John Baillargeon, Deborah Williams

Not present: Tom Bancroft, Lou Dorogi, Kat Douin, Margaret Forbes (alternate with Stephanie Crystal), Kathryn Kazenski, Stephen Maxwell, Deb Parker Wolfenden, Tracy Piantoni, Susan Wygal

Christine Bartlett chaired the meeting. Donna Lerman facilitated the meeting.

1. Vision Statement
Christine Bartlett read the Vision Statement. The Work Group agreed that it would ponder further whether the Vision Statement required changing. It was agreed that the question of whether to modify the Vision Statement would be revisited at every meeting, when the Vision Statement was read. Members were invited to add their reactions to the list of reactions from the first meeting.

2. Minutes
The minutes from the July 26 meeting were approved.

3. Housekeeping
Eileen Griffin reported that some progress had been made on resolving the travel stipend issue but that further clarification was required. She also reported that Muskie staff would continue to work on making the website accessible.

4. Definitions
The Work Group broke into small groups to further refine the definitions of terms based on the work that had been done at the July meeting. Reporting back as a large group, the Work Group had time to agree on the definitions of two terms, as follows:

• Person with a disability. The sub-group reported their draft definition: "A person with a physical and/or mental disability which substantially limits one or more life activities." Michael Arenstam expressed concern that distinguishing between a physical or mental impairment was stigmatizing for persons with mental illness, noting that mental illness has a physical cause. Nat Hussey and Helen Bailey expressed concern that using a definition different from the definition in the Americans with Disabilities Act (ADA) might mean that the plan the Work Group develops around that definition will not satisfy the requirements of the Olmstead decision. Tonya Labbe expressed concern that the ADA decision was not specific enough, and that some people would not understand that certain disabilities are included. The definition in the Department of Justice’s rules under the ADA was discussed as a possible alternative. A number of members felt it was too specific and that the courts had altered the definition so it would be misleading. Members reached (modified) consensus around using the ADA definition.

  Person with a Disability: an individual

  • with a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
  • with a record of such an impairment;
  • or regarded as having such an impairment.

• Community-Based Living. The sub-group presented their draft definition: "Living in one’s community of choice with the supports, services, and programs that will enable each person to live independently." Alice Conway suggested that it should be an informed choice of community. The group also discussed at length the question of what it means to live independently. Stephanie Crystal observed that it was not realistic to think that living "independently" means not relying on anyone, since many people with disabilities must rely on supports or services. Alice Conway observed that no one lives independently, given that we are all dependent on services and supports. Members also discussed the fact that, to some, the term "independently" suggests living alone and that not all people want to live alone. There was also concern about whether living "independently" implied one setting rather than another. The sub-group for this definition explained that they wanted the definition of community-based living to be separate from the setting in which a person lives. After agreeing that the term "independent living" needed to be defined, the group ended up modifying the draft definition as follows:

Community-Based Living: Living in one’s community of informed choice with the supports, services, and programs that will enable each person to live as independently as one chooses.

The group agreed that the placement of the word "informed" was awkward and needed to be modified at a later point.

5. Other Items
Members agreed to set aside the agenda to address other issues.

OCR Invitation. First, members discussed Alice Conway’s suggestion that the Work Group invite a representative from the regional office of the Office of Civil Rights (OCR) to speak at a Work Group meeting. The OCR, within the U.S. Department of Health and Human Services (DHHS), is coordinating with the Health Care Financing Administration DHHS’ response to the Olmstead decision. Alice thought it would be helpful to have the OCR talk to the Work Group about how other states are responding to the Olmstead decision. Chris Zukas-Lessard said she was not opposed to having OCR come to a meeting on the Work Group’s terms. She noted that other states report that OCR is adding a litigious element to the Olmstead planning process. Ron Welch suggested that the Work Group wait to invite OCR until it had a better idea of what questions it would like to ask. The Work Group could not reach (modified) consensus on whether or not to invite OCR to a meeting. It was agreed that Alice Conway, Helen Bailey and Jane O’Loughlin French discuss the question further to see if concerns could be addressed. Alice was invited to re-propose the OCR invitation when agreement was reached.

Budget Issues. It was agreed that some meeting time would be set aside to take suggestions for budget items that might be included in the Governor’s budget for the next biennium. Work Group members suggested a number of items. These items related to:

• Work force recruitment and retention (living wages, reimbursement for overtime at time and a half, reimbursement for behavioral specialists, availability of personal care assistants, expanding coverage for personal care assistants for a broader population) (Ron Welch, Tonya Labbe, Lora Perry, Jane O’Loughlin French, Michael Arenstam);
• Safe, affordable and dignified living arrangements (Alice Conway and Jane O’Loughlin French);
• uninsured medical care;
• jobs and job education (Alice Conway);
• wraparound funding (increase in funding, expand to non-class members, develop procedures for administering) (Helen Bailey);
• providing additional assistance and advocacy for accessing services (Stephanie Crystal);
• postponing the implementation of the cuts for private non-medical institutions (Helen Bailey).

It was agreed that, all those Work Group members representing state agencies could not guarantee that these budget requests would be included, they would bring the proposals forward for consideration within their departments.

6. Meeting Dates
In addition to the meeting scheduled for September 27, the Work Group scheduled a meeting for October 25. It was agreed that, although a number of people had conflicts for the September meeting, the meeting should proceed as planned.

7. Next Meeting
Alice Conway agreed to chair the next meeting. The agenda for the next meeting will be:

• Developing a Plan of Action. Eileen will draft a plan of action with a proposed time line for consideration by the Work Group.
• Independent Living Services Consumer Satisfaction Survey. Margaret Forbes will do a brief presentation on the survey.
• Definitions. The Work Group will pick up where it left off in developing definitions to terms.
• Process Feedback. Based on informal discussion, it was agreed that the group should explore alternative techniques for conducting meetings, small group exercises, etc.
• Office of Civil Rights visit. It was agreed that Alice would bring back a suggestion on how and when to invite an OCR representative to speak to the Work Group.

The next meeting is scheduled to take place at the Holiday Inn on September 27, 2000, from 1:00 to 4:00 p.m. Work Group members expressed their preference that future Work Group meetings be help at the Senator. The possibility of relocating the September meeting at the Senator will be explored.