September 27, 2000 Work Group Meeting Minutes
The Holiday Inn, Augusta, Maine

 

Present: Michael Arenstam, Helen Bailey, John Baillargeon, Christine Bartlett, Tom Bancroft, Drew Bolduc, Stuart Bratesman (staff, Muskie), Alice Conway (chair), Stephanie Crystal, Kat Douin, Margaret Forbes, Larry Glantz (staff, Muskie), Nathaniel Hussey, Dixie Leavitt (staff, Speaking Up for Us), Donna Lerman (staff, Muskie), Stephan Maxwell, Chandra Murphy, Jane O’Loughlin French, Catherine Ormond (staff, Muskie), Deb Parker Wolfenden, Lora Perry, Tracy Piantoni, Cynthia Sudheimer, Deborah Williams

Not Present: Daniel Bence, Lou Dorogi, Jane Gallivan, Christine Gianopoulos, Eileen Griffin (staff, Muskie), Kathryn Kazenski, Tonya Labbe, Janice LaChance, Denise Lord, Joanne Ogden, John Shattuck, David Stockford, Jude Walsh, Ronald Welch, Susan Wygal, Christine Zukas-Lessard

Alice Conway chaired the meeting. Donna Lerman facilitated the meeting.


1.    Call to Order
Alice Conway brought the meeting to order at 1:00 PM.


2. Vision Statement
Alice Conway read the Vision Statement.


3. Minutes
The minutes for the August 23rd meeting were approved.


4. Housekeeping


5. Independent Living Services Consumer Satisfaction Survey
Margaret Forbes led a discussion of the draft version (approved by the SILC Council in July 2000, as is) of the Independent Living Services Consumer Satisfaction Survey - July 2000. Her purpose was to inform the Work Group of independent living services issues that might need to be considered in the Work Group’s final plan.

She explained that Maine’s State-wide Independent Living Council (SILC) is responsible for monitoring the quality of Independent Living Services programs operated by Alpha One and Maine Independent Living Services (MILS). MILS ceased operating in June. Alpha One applied for, and now administers the Independent Living Services program funds that formerly went to MILS. These funds come from the Department of Education’s Office of Special Education and Rehabilitative Services federal grants under Title VII and are distributed to Alpha One under a contract with the Maine Department of Labor.

A total of 817 consumer satisfaction surveys were distributed by mail and overall, 24% of survey recipients responded with a completed survey. Although women and men are served by the program in roughly equal numbers, women were more likely to respond to the survey than men. Persons age 40-to-69 represent a significant portion of the population served. More detailed information on the ages of persons surveyed appears pages 4 and 5 of the survey report. Margaret also pointed out that according to the survey results, the program’s services appear to be concentrated in just three of Maine’s sixteen counties, and that many rural counties appear to be underserved.

About one-third of the survey participants were placed on a waiting list when they first contacted the Independent Living Services program. Some are still waiting. Some survey participants report waiting for over two years.

More than 80% of the consumers in the survey contacted MILS and Alpha One for services by mail or by telephone. Few consumers in the survey identified transportation to receive Independent Living Services as an important issue. Members of the Work Group suggested that general transportation needs be addressed by future surveys.

Twenty-five percent of the MILS consumers in the survey and 18% of the Alpha One consumers reported that they had not been adequately informed of their rights to receive services, change their service plan, or appeal. The Consumer Assistance Program administered by Consulting, Advocacy, Research and Evaluation Services, Inc. (C.A.R.E.S., Inc.) helps consumers to understand their rights and offers assistance with their appeals.

Of the survey respondents who said they want or need additional services, most would request, "practical living supports, repairs, or assistance."

About 80% of MILS consumers who responded, and over 90% of Alpha One consumers who responded said they were very or somewhat satisfied with their services. There were a number of individual complaints about the quality problems or design errors in work performed by contractors hired to make accessibility modifications to homes.

Survey participants were asked if the Independent Living Services program allowed them to move out of a nursing home, or if it allowed them to become more independent in their own home. Their responses are reported in the table at the bottom of page 21. Margaret said the issue needs close attention from the Work Group.

The survey found that when people apply for independent living services, they are often not made aware that there can be a long waiting period. Consumers often don’t learn of the waiting list until they have already been approved for services. People still on waiting lists expressed lower satisfaction with the program than people already receiving services.

Deb Parker Wolfenden suggested that the responses to survey questions about the quality of services be broken down between persons already receiving services and persons waiting to be served. Margaret Forbes responded that SILC could not afford the additional expense of having the data reanalyzed that way. SILC has asked AlphaOne to review the survey findings and respond. SILC wants to learn if the program needs more resources to reduce waiting lists, or if waiting lists could be reduced by a more efficient use of resources. SILC also wants to learn whether independent living services are delivered primarily to persons with physical disabilities or targeted to a population of persons with a wider range of disabilities.

Michael Arenstam voiced concerns that the survey almost completely ignores persons with mental illness. He added that persons with mental illness in Maine face an abysmal lack of housing and lack of transportation from their home or homeless shelter to their psychiatrist. He said that many people with mental illness can only afford their medications if they qualify for limited drug company programs that distribute free drugs to persons too poor to afford to pay. Margaret Forbes replied that the survey’s recommendations include the need for these programs to address other disabilities including mental illness and mental retardation.

Stephanie Crystal noted that the report does not indicate whether the survey included persons in jails and suggested that the work group should try to identify the number of persons with disabilities in jails who fail to receive ADA-mandated services.

Christine Bartlett asked if the survey sample was drawn from the population of persons who had applied for independent living services, or from a list of persons who had previously contacted SILC. Margaret answered that Alpha One and MILS had been very cooperative in providing the names for the survey sample from their client and waiting lists.

Jane O'Loughlin French suggested that the report detects only the tip of the iceberg and that Maine lacks adequate funds and lacks adequate structure for providing services. She also took note of the complaints about the poor quality of home modifications. She recommended that Maine adopt other states’ use of a clearinghouse list to identify contractors who meet quality standards for home modifications.

Alice Conway replied that AlphaOne publishes a contractor list, but has been advised by legal counsel to include all contractors on the list to conflict of interest and possible discrimination against the excluded contractors.

Michael Arenstam recommended that due to the inadequacies identified by the group, SILC should withhold the survey from publication. Margaret Forbes replied that the draft had been revised and expanded. She added that SILC will be conducting public forums across the state to discuss the survey results.

Alice Conway wanted to be sure everyone understood that MILS closed operations completely and did not merge with Alpha One. However, Alpha One now serves many of the former MILS consumers and receives the Independent Living Services funds that used to go to MILS. She also noted that Alpha One mails letters every six months to update persons who are still on the Independent Living Services waiting list. If a letter is returned as undeliverable, Alpha One will try to locate that person.

Michael Arenstam noted his difficulties in asking the Department of Behavioral and Developmental Services (BDS) to report the number of persons on waiting lists for mental health services. He said the Department has replied that mental health waiting list information is in the hands of individual provider agencies and unavailable from the State. However, he said that since providers are required to report waiting list information every three months, the Department ought to be able to provide waiting list information without great difficulty. People with mental illness, he said, who wait five years for services face an untenable situation.

Margaret thanked the group for the opportunity to present the report, and said she would follow-up with SILC and inform them of the Work Group’s responses and recommendations. She hoped the Work Group would consider the issues identified in the survey when developing the Work Group’s final report.


6. Process Feedback
The Process Feedback group met that morning and changed their name to the Universal Access Group. Their recommendations include:

Work Group members were asked to forward suggestions and questions to Donna Lerman or Eileen Griffin.

Deb Parker Wolfenden said she would give a set of printed material accessibility guidelines to Muskie to distribute to the Work Group mailing list.


7. Developing a Plan of Action
Larry Glantz described the "Proposed Work Plan with Time Line" handout. He explained the "Plan for Bridging Gap Design" item. The bridging gap activity will focus on key issues chosen by the Work Group, identify service gaps related to those issues, and design ways to bridge to those gaps.

Stephanie Crystal asked if the Work Plan will include looking at how other states are addressing Olmstead issues. Larry replied that it would.

Lora Perry suggested that the time line be revised to allow more time for drafting and completing the final report. Since the proposed finishing date synchronizes well with the legislative calendar she recommended that drafting begin earlier.

Chandra Murphy suggested that the report and other documents be written in clear and easy-to-understand language.

Deb Parker Wolfenden reminded the Work Group that federal policies and regulations change daily. Many of these changes will affect the Work Group’s decisions and state policies. She recommended that the Work Group staff monitor changes to federal laws and regulations and keep the Work Group informed.

Helen Bailey recommended that the Work Group avoid tying solutions and plans to specific funding sources or even a list of specified funding sources. She warned that the Pineland Consent Decree’s over-reliance on Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR) had seriously limited the options and alternatives for consumers leaving Pineland. When the State looks for alternatives to institutionalization, those alternatives should not be limited by the goal of maximizing federal dollars. The State should offer alternatives aimed at maximizing personal potential. Instead of identifying a list of alternatives to institutionalization, the Work Group may want to defined a broad entitlement to community-based services.

The chair noted the Work Group’s general agreement that the broad outline of the plan is good and that it will probably require tweaking. The Work Group agreed to give Eileen feedback at the next meeting.

The group discussed and agreed to the need to perform a Strengths, Needs, Opportunities and Weaknesses (SNOW) analysis. Donna Lerman explained that the "Collaborative Design Statements," item in the work plan time line is a copyrighted process that will be described in full at a future meeting.

Helen Bailey warned that recent data from the State suggest that as persons with disabilities become more independent, they also tend to become more isolated. She suggested that the Work Group keep in mind the phrase, "Don’t forget about the trumpet lessons." Integration is not just about housing; she said, trumpet lessons can be just as important to fully integrate people into the community.

The group agreed to Lora Perry’s suggestion that Jane O’Loughlin French be asked to present for 15-20 minutes on her experiences with the independent living system in Connecticut.

Nathaniel Hussey suggested that Work Group members re-read each department's profile to become aware of the variety of different angles and problems across departments.


8. Defining Terms
Helen Bailey raised an issue with the "undue burdens" phrase in the previously adopted definition of "Reasonable accommodations." She said the current wording makes the consumer responsible for avoiding an "undue burden" on a facility or service provider. However, the primary responsibility should rest with the facility or provider to accommodate the needs of a person with disabilities. Our current definition places the burden on the person, to avoid placing an undue burden on the provider.

Stephanie Crystal expressed concern that if the definition process continues for months, the Work Group may reach a serious point in discussion that depends upon a definition that has not yet been completed.

Donna Lerman replied that the Group is preparing the definitions for inclusion in the final report and that meaningful discussions can continue in the meantime.

The Work Group proceeded to define the term, "Integration."


9. Next Meeting - Agenda Items for October 25th Work Group Meeting
Tentative location: The Arboretum (several members expressed concerns about accessibility and the staff will look for a different location. The Senator Inn and the Holiday Inn are not available on that date.)

Jane Gallivan will chair the October meeting.

Agenda Items:


10. Other Business
Margaret Forbes said that Jane Gallivan had been asked if she would be willing to present on the Community Consent Decree audit at some future meeting. Helen Bailey offered to publish the audit report on her website and would let Eileen Griffin know the address when the report is available.

John Baillargeon has volunteered to chair November meeting. A volunteer is still needed for January.

Deb Parker Wolfenden received a copy of Connecticut’s Olmstead Coalition videotape, "A Day in the Life," and offered to show it at a future Work Group meeting.

The meeting adjourned at 4:04.