October 25, 2000 Work Group Meeting Minutes
The William S. Cohen Community Center, Hallowell, Maine

 

Present: Christine Bartlett, Cynthia Sudheimer, Deborah Williams, Catherine Ormond (staff, Muskie), Alice Conway, Ronald Welch, Steve Maxwell, Jane O'Loughlin French, Helen Bailey, John Shattuck, Donna Lerman (staff, Muskie), Jane Gallivan (chair), John Baillargeon, Susan Wygal, Stephanie Crystal, Dennis Tan, Chandra Murphy, Karen Lucarelli (staff, Muskie), Deb Parker Wolfenden, Kathryn Kazenski, Lora Perry, Dennis Tan (consultant), Eileen Griffin (staff, Muskie), Stuart Bratesman (staff, Muskie).

Not Present: Michael Arenstam, Tom Bancroft, Lou Dorogi, Kat Douin, Larry Glantz (staff, Muskie), Nathaniel Hussey, Tracy Piantoni, David Stockford, Christine Zukas-Lessard.

Jane Gallivan chaired the meeting. Donna Lerman facilitated the meeting.


1. Check-in and Introductions
Jane Gallivan opened the meeting with a check-in and introductions. Catherine Ormond, from the Muskie School, introduced herself and explained that she would be conducting the focus groups for children. Dennis Tan also introduced himself, explaining that he would be working with the Muskie School supporting the data analysis project. Jane also asked Work Group members to provide feedback on how they felt about the process for the Work Group. Many members agreed that they were feeling overwhelmed by the amount of information they had to read both on paper and from the e-mail listserv. The Group discussed whether they were getting information that was not necessary for Work Group activities. It was agreed that most of the information was important but that it would help to have Muskie help everyone organize the information. It was suggested that "organizing principles" be developed to assist people in organizing the paper that is sent to them. Chandra Murphy and Stephanie Crystal volunteered to work with Eileen Griffin and Donna Lerman to develop these organizing principles.

 

2. Vision Statement
Jane Gallivan read the Vision Statement: "All of us together, in community, happy, fulfilled, and equal in dignity and rights."


3. Minutes

The minutes of the September 25th meeting were approved as revised.


4. Housekeeping
Several items were on the list for discussion under the heading of "Housekeeping."

Meeting Chairs. Eileen explained that the sign up sheet for meeting chairs had been lost; a new list was circulated. The following people are signed up to be meeting chairs for the following meetings:

Brochure. Eileen also explained that the Muskie School would be preparing a brochure that would describe the Work Group and its activities and tell people how to find out more. Eileen will ask the Work Group to help decide who the brochure should be written for (for example, legislators, interested parties, the general public) and what it should say. She said that she would solicit input from the Work Group through the listserv. In a later discussion, Kathryn Kazenski recommended that the brochure be mailed to town managers and town councils.

CHCS Conference. At the last meeting people expressed interest in learning more about what Chris Zukas-Lessard and Eileen learned at the Center for Health Care Strategies conference in September. Because the agenda for the meeting was so long, Eileen gave everyone a copy of the conference agenda and asked people to call or email her if they wanted to learn more. She said she would also post the agenda on the listserv.

New Member. Eileen explained that Chris Zukas-Lessard had suggested that the Work Group add a new member to represent persons with traumatic brain injury. She said that the Work Group may need to develop a policy on how and when to decide to add more people. In this case, the Work Group agreed that adding this new member was appropriate without further discussion. Work Group members discussed a number of different groups of people that might need representation, including persons who are deaf, local police and sheriffs, and other local community efforts to integrate and coordinate services parallel to the Work Group’s mission. Eileen suggested that in some cases Work Group members might feel the addition is appropriate, in some cases the Work Group might feel they can adequately represent the interests of others, and in some cases it might be important to bring in different people on a short term basis to help with specific questions.

Time Line/Work Plan. Eileen discussed the work plan and time line. She said the time line was very ambitious and keeping to it would require a large commitment of time and energy in addition to regular monthly meetings. However, she encouraged the Work Group to try to keep to the time line, with the goal of having a plan in place in time for the next legislative session.

Travel Stipends. In the interest of time and because not everyone was present, Eileen tabled the discussion of the travel stipends for a later meeting.


5. Connecticut’s Programs
Jane O'Loughlin French presented a report on Connecticut’s programs for persons with disabilities. She noted that Connecticut has completed their Olmstead Plan and it can be found through the Work Group’s website. Jane said that Connecticut’s programs are not unlike the programs offered in other states. These programs include supported independent living, independent living supports for persons with multiple disabilities, community living arrangements with 24-hour/day staff and family supports. Connecticut has a consumer-directed plan with payroll brokers. Individuals can hire train and fire as they see fit. The Home of Your Own Program allows people with disabilities to have home ownership. In the last 15 years Connecticut has done extensive work to develop private sector services. Connecticut also has strict licensing so that agencies are well regulated to exclude substandard agencies. The community living arrangements (group home) are for people who have cognitive disabilities or other health care needs and need 24-hour care. Many of these group residences are small with two or three consumers living together.

Jane said that lawsuits to close institutions helped to stimulate the home and community services. In addition, there was a lot of lobbying activity with legislators. People shared individual success and horror stories with legislators. There was also a lot of lobbying for good wages. In one program, people with housing needs are being matched with persons with a disability to address both persons’ needs at the same time.

Connecticut still operates Southbury Training School which has 690 beds. Connecticut has voluntarily forfeited federal money for the Training School and spent $40 million to keep it open at the request of parent groups. She said the facility is in good shape but that inside it is institutional and renovations had not changed that.

Lora Perry asked what direct care providers are paid in Connecticut. Jane said direct care providers in Bangor are offered $7 to $8 dollars. In Connecticut, wages went from $9.04/hour to $11.98/hour. She also noted that the federal MICASA legislation would prohibit agencies from hiring people part-time to avoid paying benefits.

Helen Bailey asked whether the wage increases improved the quality of care. Jane said yes, Connecticut was able to recruit people with better backgrounds. In addition mandatory training meant that employees knew about the basic core issues of care. Higher wages also helped to reduce turn-over and made it easier to retain experienced workers. Helen Bailey asked Jane if she knew of any studies that linked improved quality and reductions in provider shortages to increased wages. Jane said she would find those studies for Helen.


6. Universal Access Group Report
Stephanie Crystal reported on behalf of the Universal Access Group (including herself, Alice Conway, Margaret Forbes, Jane O'Loughlin French, and Donna as staff). She said the group had met twice and developed a list of suggestions for accommodations for persons with cognitive and other disabilities. The group planned on writing a paper to post on the website so that others could benefit from what they have come up with. Helen Bailey was concerned that the recommendations in the handout were too rigid. She emphasized that an accommodation should be tailored to the disability. For example, not every person who is deaf knows American Sign Language. Therefore, using an American Sign Language interpreter would not be an appropriate accommodation. Stephanie and others responded that the recommendations are intended as guidelines and suggestions, not absolutes, and were not intended to address every possibility. Alice Conway acknowledged Helen’s point about needing to have the disability determine the accommodation. Alice said that the Universal Access Group planned to continue its work and that the input of others is helpful. The Work Group also discussed the question of whose responsibility it is to find out if an accommodation is needed? Helen said it is not appropriate for an employer, for example, to decide what accommodation, if any, is necessary. Stephanie noted that for twenty years she never spoke up about what she needed and that it is only in the last ten years that she has been able to talk about it. Chandra reported that when she first started working at the Goodwill Store, she had to tell her employer what she needed. She said it was difficult at first, but now she tells them what she needs and most of the time they listen.

The Work Group agreed that it would provide feedback to the Universal Access Group through the listserv. Also, Eileen would announce the dates of future Universal Access Group meetings so that other Work Group members could attend if they are interested. The Work Group also agreed to have a "check out" at the end of each meeting to see how well the meeting process accommodated everyone’s needs. The next Universal Access Group meeting will take place sometime in January.


7. Data Systems Analysis
Eileen described the data systems analysis that is funded under the Center for Health Care Strategies grant. The plan is to integrate data systems across the Department of Human Services, the Department of Behavioral and Developmental Services, the Department of Education, the Department of Corrections, and the Department of Labor. The questions to be asked would include the number of people, the number of people on waiting lists, the needs that are not being met, and so on. The current plan is to interview people to ask them what they want to know, meet with the Work Group to ask what they want to know, try to refine these needs and tailor them to what is possible given the data systems that are out there, make a plan, and then design a pilot project to test the plan. Eileen said that the plan would be to meet with the Work Group in two to three months to discuss the data systems analysis in more detail.

In discussing the data systems analysis, the Group raised a number of issues. Helen Bailey suggested it would be difficult to integrate data systems across programs and departments without violating the confidentiality or privacy rights of the consumers receiving services. Stephanie suggested that the State’s data system should be designed to measure the number of people who need services, but have not yet applied for services. Others suggested it would be difficult to identify and count persons who have not made any contact with the state system. Tonya Labbe recommended that the State’s data system should measure quality-of-life, consumer satisfaction and service outcomes measures.


8. Focus Groups
Eileen described the plan to conduct focus groups, another activity funded by the Center for Health Care Strategies grant. The purpose of the focus groups would be to find out: what’s working, what’s not working, and what do people need that they do not have now, to make community living sustainable and fulfilling. There is funding to conduct 12 focus groups. Six would focus on adult issues and six would focus on children’s issues. For each age group, four would be consumers and two would be providers. Because the goal set for the Work Group has been to develop an interdepartmental plan for home and community services, the needs of the people participating in the focus group will cross more than one department. Muskie will try to make sure focus groups participants will represent the needs of people across all ages, since issues and concerns can vary. (For example, ideally the focus groups will need to address the needs of children aged 0-5, 5 to teen, and then teen and up.) Eileen asked if each focus group should be organized around type of need, such as a need for personal care services, etc. Eileen also asked for volunteers for the Focus Group Advisory Committee to assist Muskie staff in making sure that the focus group protected the participant’s rights while maximizing their participation. Meetings will be by phone or email as much as possible over the months of November, December, and January.

Work Group members raised a number of issues. The Group discussed whether consumers and providers could be included in the same focus group meetings. It was also suggested that focus group participants include persons living in institutional settings, along with some persons living in the community, but at risk for entering an institution. It was recommended that some focus group meetings be located within institutions. A suggestion was also made to include persons across a range of levels of severity of need. Several members recommended that the focus group meetings use interactive television or other video methods be used to include consumers from different parts of the State. Catherine Ormond expressed concerns that this suggestion might make it difficult or uncomfortable for consumers to speak openly about very private issues.

Because the Work Group did not reach resolution on the questions above, Eileen said she would try to get guidance from the Focus Group Advisory Committee. A sign-up sheet for the Focus Group Advisory Committee was circulated. The following people signed up:


8. Closing
The agenda for the November meeting will be devoted to the Strengths, Needs, Opportunities and Worries (SNOW) analysis to determine which issues to work on over the next year. The November meeting is scheduled for Wednesday, November 29th from 1:00-to-4:00pm. The November meeting will be chaired by John Baillargeon.

Several members asked others to remember to use the microphones and also noted that the new sound system used at this meeting was better than the systems used at earlier meetings. Several members also expressed their approval of the Hallowell location and recommended that it be used for future meetings. Members were also reminded to set mobile phones, pagers, and other electronics to silent mode or low-volume.