Present: Cynthia Sudheimer, Ron Welch, Helen Bailey, John Shattuck, John Baillargeon, Alice Conway, Donna Lerman (staff, Muskie), Chris Zukas-Lessard, Margaret Forbes, Stephanie Crystal, Chandra Murphy, Dixie Leavitt, Kay Dutram (staff, Muskie), Peter Driscoll, Deb Parker Wolfenden (by phone), Deb Williams (by phone), Dale Finseth (guest), Catherine Ormond (staff, Muskie), Eileen Griffin (staff, Muskie), Stuart Bratesman (staff, Muskie)

Not Present: Tracy Piantoni, Christine Bartlett, Drew Bolduc, Nat Hussey, Kathryn Kazenski, Lora Perry, Susan Wygal, Jane O’Loughlin French, Tonya Labbe, Kat Douin, Jane Gallivan, Tom Bancroft

Chris Zukas-Lessard chaired the meeting. Donna Lerman facilitated the meeting. Donna and Kay Dutram facilitated small group activities.

1. Check-in and Roll Call

2. Vision Statement
Chris Zukas-Lessard read the Vision Statement: "All of us together, in community, happy, fulfilled, and equal in dignity and rights."

3. Minutes
The Work Group approved meeting minutes for the January 18, January 24 and February 28 meetings.

4. SILC Conference
Dale Finseth, the Executive Director, explained to the Work Group that the Statewide Independent Living Council (SILC) plans to host a conference on May 25 and that Work Group members are invited to use this conference as an opportunity to ask for consumer feedback on Work Group ideas. Dale said that the SILC plans to have 60 to 100 consumers in attendance. The conference will have at least six work sessions during which participants will focus on specific subject areas. Participants will be given "homework" to frame the discussion for each of these Work Group sessions and Dale offered to target some of the work sessions around Work Group areas of interest. Work Group members could participate in some of the work sessions to benefit from the expertise of the participants.

It was agreed that Work Group members should participate in the SILC conference. It was also suggested that staff to the Work Group attend and report back on the conference. Eileen also suggested that the sub-groups might want to identify specific ideas that they would like to float at in the work sessions at the conference.

5. HCFA Grant Solicitation
Chris Zukas-Lessard explained that HCFA was offering two grant opportunities that the State was planning on pursuing. The first was a $50,000 planning grant to support state efforts in getting consumer input in the plan development process. Chris explained that some of this money would be used to support Work Group activities. The other grant was the Real Choices Systems Change grant. The solicitation for this grant is expected in March or April. This grant will pay for changes to the system for delivering services and is focused on creating lasting change and supporting choice and integration. The grant application requires a consumer taskforce to assist in developing the grant application. It was proposed that the Work Group serve as the consumer taskforce. Chris suggested that the Work Group use some time during this meeting to brainstorm ideas for the grant. She also suggested that a sub-group form to help refine and further develop this list.

The Work Group did identify some ideas for the grant application:

• begin case manager system for physical disabilities (Stephanie);
• design and implement system of funding that would follow the individual (direct funding, including grants, vouchers, etc.) (Helen);
• develop non-medicalized system of support; develop alternative system based on natural supports (Peter);
• develop training program -- there is a gap in understanding the "lived" experience of a persons with disabilities. Distinguish from care of elderly. Focus on the person, first, not the disability. (Stephanie & Alice);
• Develop "one-stop" shopping to access services;
• Set up a course for consumers to advise them of all their choices so they really have informed choice (John S.);
• Revamping case manager system (MI & MR) (Stephanie) and coordination (Deb P.W.);
• Improve advocacy efforts within state and provider agencies. (Stephanie);
• Engage the business community in job development (Ron);
• Transportation, jobs, housing (Cynthia);
• Community education -- police, fire department, etc. (Margaret);
• Family-based, whole person;
• Wrap-around services, eliminate categorical funding of services (DHS & BDS) (Ron);
• Job training and coaches (Chandra).

People signed up to help further develop and refine this list: Ron Welch, Helen Bailey, John Shattuck, Alice Conway, Chris Zukas-Lessard, Stephanie Crystal. A meeting date for this sub-group will be set.

6. Adding New Members
The Work Group followed up on the discussion of whether or not to add new members. The Work Group agreed to keep membership open, in the event that the Work Group found that it could not adequately represent certain interests.

7. Sub-Group Activity
The Work Group broke into two of the three sub-groups: Services and Coordination.

Services
Sub-Group Members: Cynthia Sudheimer, Alice Conway, Ron Welch, Peter Driscoll, Deb Parker Wolfenden (by phone), Margaret Forbes, Chandra Murphy, Dixie Leavitt, Helen Bailey. This sub-group was facilitated by Donna Lerman, and staffed by Eileen Griffin and Stuart Bratesman.

This sub-group focused on one opportunity for improvement: indexing the budget to the number of children aging into adulthood.

The following ideas were discussed:

• Budget "indexing" might be unconstitutional. The real objective might be to obligate states to collect and publish the data necessary for determining the anticipated need for children transitioning to adulthood.
• The data needed to determine the anticipated need will be a mixture of different sources: Special education numbers will only collect the number of people in the special education system, not children served under different programs or who have been marginalized or expelled by the school system.
• Priority for services is given to those in crisis; need to collect data on children that need services but are not at a crisis level.
• A few years ago, the Legislature may have obligated state agencies to index their budgets for anticipated needs for children with developmental disabilities transitioning to adult services.
• The group discussed whether it was relevant to evaluate the quality and appropriateness of transition plans.

The following action steps were identified:

• Identify and collect data to estimate the anticipated need for children transitioning to adult services (children 14+ in special education, 504, homeless, correctional system, accommodated children, all kids expelled by or dropped out of school system);
• Need to determine the level of need for adult services by region; need to identify process and procedures for applying for services;
• Need data on waiting lists for adult services;
• Contact DOE, BDS, and the Committee on Transition to find out about other budget indexing initiatives.
• Consult with Larry Glantz, Committee on Transition, to gain better understanding of transitional issues.

Coordination
Sub-Group members: John Baillargeon, Chris Zukas-Lessard, Stephanie Crystal. This sub-group was facilitated by Kay Dutram and staffed by Catherine Ormond.

This sub-group identified the following objectives:

• consumers are able to access services from any point of entry in any department, any sub-contracted agency (e.g., one short useable application procedure, not categorical by disability, could be a checklist of needs; more detailed need identification process after broad category is identified);
• consumers have an option to be directed where, when, whom to contact/apply at other agencies;
• consumers have an option to receive inter-agency referral(s); each referred state or private agency would contact the consumer to arrange for services;
• an "independent living" model is used as the guidance for providing services (rather than the medical model);
• the money follows the consumer.

(Note: how administrators view outcomes of their work: 1) frustrations change from consumer complaints to frustrations of nature of coordination/collaboration with other agencies with their rules; 2) might have waiting lists; and 3) might work on identifying additional needs.)

This sub-group identified the following action steps:

• collect data on provider or funded services;
• identify existing MOUs, intra- and inter-departmental, and between bureaus.

Catherine reported that work on the service matrix was continuing. The subgroup will use the matrix to see where similar services are being delivered and/or funded by state agencies. The next step will be to collect all state agency Memoranda of Understanding (MOU) and organize them for the subgroup to analyze.

8. Next Meeting
Agenda items for the April 25 meeting include: sub-group activities; housing transportation & employment; the Real Choices grant update. The April meeting is scheduled for Wednesday, April 25^th from 1:00-to-4:00pm at the Cohen Center. Lora Perry is the chair of this meeting.