Speaking Up For Us of Maine
PO Box 1065
Gardiner, ME 04345
(207) 582 0005 & (207) 268 9151
This has been a year of big changes for SUFU. In January, Jodi Benvie, the Project Coordinator, announced she would be leaving SUFU. A hiring committee was formed, interviews took place in February and March and Mary Schneckenburger was hired. Her background is in adult education, training and facilitating. Jodi has remained on call for help and frequently assisted during these transitions.
The Disability rights Center agreed to be the new fiscal agent for SUFU beginning July 1, 2004. This will not change how SUFU does their work. The DRC, like PSL, will manage employee benefits, bills, etc.
The DD council offered to build and maintain a website for SUFU. After much work in the DDC office, sufu.org went online near the end of this fiscal year.
SUFU also needed a new fiscal agent for the annual conference. Victoria LaBelle sadly reported that OHI was unable to do the job for another year. SUFU allies have come to our rescue with offers to help with both financial and registration tasks. The SUFU conference planning committee has chosen the very appropriate title ‘Changes’ for this year’s annual conference. The subtitle is ‘Stronger Than Ever’ and that is true! In a year full of challenges inside and outside of SUFU, the board and other SUFU members have risen to the challenge. There has been an overwhelming effort to make sure the voices of self advocates have been heard on all fronts. Attending rallies, writing letters, speaking before the legislature, speaking at press conferences, public forums and editorial boards and serving on committees are some of the amazing efforts SUFU members have made this year. Amidst all of the changes, they really are stronger than ever.
Goal 1:Speaking Up For Us will ensure opportunities for self advocates’ voices to be heard by advocating and speaking up about issues that are important to us to the legislature, policy makers, professionals, organizations, family members, and community leaders.
Objective 1: SUFU will keep abreast of current events as they affect people with disabilities and work with legislators, and other policy makers, testify and write letters on at least five issues that affect us by June, 2004.
SUFU members had many opportunities this year to share ideas with the public, the legislature and other policy-making bodies. SUFU is being asked to help guide policy-making decisions more frequently since they have become clearly recognizable faces at the state house during the legislative session. Dozens of self advocates wrote letters to the legislature opposing further cuts to BDS. At least four self advocates spoke at press conferences and legislative hearings. At least ten SUFU members joined over 1500 people at a rally in Augusta to oppose further budget cuts to BDS and Medicaid funded services.
Self advocates in Augusta, Lewiston and Portland attended public feedback meetings regarding the budget cuts and the BDS/DHS merger. They also attended editorial boards with newspapers from around the state to bring attention to the impact of the budget cuts and the upcoming merger on people in the disability community.
On Disability Awareness Day, in the Hall of Flags, four self advocates and a SUFU advisor spent the day talking with the governor and members of the legislature on budgetary issues of relevance to the disability community.
Two SUFU board members were appointed to the Governor’s stakeholder committee for the merger of BDS and DHS to meet monthly with people from BDS, legislators, community members and service providers to ensure that people with mental retardation get the best services possible in the new department.
Three self advocates and their supporter from Region 3 have regularly attended the monthly Consumer Advisory Board (CAB) Breakfast Club meetings to give input and stay informed of legislative and system change information.
The SUFU officers closely monitor current events and meet regularly with BDS and DRC to stay informed of upcoming issues. At least eight self advocates met regularly with several different BDS team leaders and representatives to share information and work together on important issues such as proposed budget cuts and the DHS/BDS merger. Officers wrote letters in support of Jane Gallivan and her position at BDS.
A longtime grant that had been paying for supports and transportation for Northern Maine Peer Groups to meet ended June 30, 2003 and was not renewed. In response, several self advocates from Region 1 wrote letters of concern to Jane Gallivan requesting help to reinstate self advocacy groups. With her encouragement and assistance from the northern Maine advisor, county self advocates completed a proposal to BDS for regional peer group support.
Invited by SUFU officers to speak at a statewide meeting, Jane Gallivan of BDS and Tom Field of DRC shared information regarding the effects of the merger on services and answered as many questions from self advocates as they could. Vanessa Bell, Project Manager for the Independence Plus pilot project also presented this project to SUFU at a statewide meeting and received feedback from members.
Objective 2: SUFU will advocate for people to have options for alternatives to institutions and sheltered workshops and increase community inclusion and independence by working with at least 3 allies such as BDS, DRC by June, 2004.
Self advocates and supporters have been meeting with the Disability Rights Center and BDS to look at how to work together to get the word out about alternatives to sheltered workshops. We are getting the word out about “Ticket to Work”. Additionally, support is being provided to two self advocates from Patten to design a presentation for the annual conference about the process and feelings, mostly fear, associated with the closure of the local sheltered workshop and how one community, agency, and a group of self advocates made a scary situation turn into a promising future for many. Another self advocate was on a committee to close down his local sheltered workshop.
We are also working with Community Inclusion teams that were established last fall in all three areas of the state. Members of these teams include staff from BDS, employees of disability organizations or agencies, community members and self advocates. The goal of the teams is to find a specific topic or project that will educate people about and promote the benefits of community inclusion. Teams have been meeting about every other month to work on their plans. An overall goal of the CI Teams is to gather stories of inclusion. Two self advocates have put their story on videotape to be used at events. These two self advocates from Region 3 and one from Region 6 presented their personal stories of community exclusion and inclusion with a member of the Central Maine Community Inclusion Team at Wiscasset High School diversity day training at the school sponsored by the school Civil Rights Team. The inclusion team had an opportunity to discuss experiences with two classes (15-20 students each) and at an informal reception of about 30 students, teachers and civil rights team members. Two SUFU members from Portland Community Inclusion Team went to Living Innovations in the Portland Area to present to staff about community inclusion and the Portland local group is designing a training for staff on independent living and community inclusion.
Additionally, SUFU provided a rights and responsibilities training based on the FYI from SUFU manual. Approximately 20 individuals of The Adult Multiple Alternative Center in Caribou attended, some of whom were former residents of the Aroostook Residential Center (ARC). SUFU continues to work with staff and residents from ARC to assist with their transition from ARC to community living. SUFU’s northern advisor met with two former residents of ARC, received very positive updates on their new living situation, was invited to participate in planning for attendance at the SUFU annual conference and shared advocacy support contact information with them.
In February, self advocates from around the state had the opportunity to meet with Shell Moore, Department of Labor, to look at how the Career Centers in Maine are meeting the needs of people. Self advocates shared stories about Career Center experiences and suggestions for improvement. In May, two SUFU members attended the annual SILC conference and participated in SILC goal setting.
Objective 3: SUFU will encourage individual voices to be heard by teaching about voting and making the disability community known as a voting force by inviting legislators to at least two events by June, 2004.
We held our final Project VOTE training for this fiscal year in January in Portland. Self advocates from around the state have received voter training from the Maine Project VOTE Team, which presented five voting workshops in Farmington, Augusta, Brunswick and at the SUFU conference to over 50 self advocates. The Project Vote training is delivered by self advocates, an advisor/community member and a legislator, Arthur Lerman, and presents information about the process of voting, why it is important and how to make decisions on how to vote on the candidates and the issues.
SUFU is also working with the DRC on the ‘Help America Vote Act’. The group is called ‘All Maine Votes’ (AMV). This compliments the work SUFU is doing with Project VOTE. One of the missions of the DRC partnership is to educate people who are at the polling places. Voter education will work best when the people at the polls have the knowledge to assist people. A SUFU member and advisor attend the monthly AMV meetings.
SUFU, and self advocates from around the state signed on to a National Voter’s Proclamation for accessible voting for people with developmental disabilities under guardianship. In 2001, we fought to protect the right to vote for people under guardianship. We are pleased that now it may be addressed on a national level and not vary from state to state, as is currently the case.
Representative Pat Colwell was a keynote speaker at SUFU’s 10th Anniversary Conference. Representative Arthur Lerman has been working closely with SUFU to train individuals to be informed voters, about ways to obtain information, and learn about accessibility options at the polls and he also attended the recent regional gathering. Representative Lerman also led a session at the SUFU Conference about the legislative process and why it is important to express yourself and be involved.
Objective 4: Speaking Up For Us will connect and collaborate with at least three boards or committees on a local level to improve and increase transportation and share information about how to get rides by June, 2004.
SUFU members in the Portland area are trying to connect with a board member from Regional Transportation Program to invite them to a local meeting. One self advocate from Brunswick is serving on The Mid-Coast Collaborative for Access to Transportation. This group has members from 17 area agencies that serve people with disabilities, 11 service groups and four individuals with disabilities. They are tackling the issue of transportation for the mid-coast region.
SUFU is supporting two board members and two local group members to
work with The Maine Alliance for the Mentally Ill and Maine chapter of the National Federation of the Blind to form a coalition to deal with the Transportation problem in the Capital Area. This coalition will be working with KV Cap/ KV Transit (Kennebec Valley Community Action Program) to gather information by way of public forums to make the KV Transit bus schedule more accessible to people who need it. SUFU Region 3-4 advisor is offering technical support to local self advocates to explore transportation options to get to local meetings and back home due to the loss of some bus routes provided by KV Transit.
SUFU worked with the Aroostook Advisory Council (MPF) on the project “Taking on Transportation.” Flyers were passed out at the Aroostook Center Mall. The project is spreading the message for people going to the mall, grocery store, church, etc. to invite a neighbor or a friend along. The project hopes to remind the community that everybody needs to do the same everyday things, and some people just need a little assistance
Goal 2: Speaking Up For us will educate self advocates, support staff, children, families, professionals, public officials and community members and caseworkers about things that are important to us.
Objective 1: We will train people with disabilities and future self advocates about self advocacy and other topics that will help people speak up, empower them and help them become more independent. We will offer at least five trainings to self advocates on these and related topics by June, 2004.
In October, 2003 at the 10th Annual SUFU conference, SUFU members presented on Person Centered Planning, Educating Family Members, Exploitation, Voting and Education for the Visually Impaired.
In January, 2004, the Project VOTE team presented a day long training in Portland. Three self advocates presented the ‘Exploitation’ training at the Advocates in Action annual conference, “Everyday People” in Rhode Island.
In November, self advocates from the Capitol area presented to 2 small groups in Lewiston and Farmington about self-advocacy using their training booklet, ‘FYI From SUFU: What Self-Advocates Need to Know about Self-Advocacy’.
A self advocate and supporter presented the first part of the Self Advocacy Training to 45 local self advocates and four supporters in Rumford on June 8 and have scheduled the presentation of Part 2.
On June 2, SUFU members and northern advisor worked with Sunrise Opportunities in Calais to host a full day self advocacy training. Approximately 25 self advocates participated in the training and were given a copy of FYI From SUFU: What Self Advocates Need To Know About Self Advocacy. These self advocates plan to start meeting regularly as a group. Phil Leonard, Region 3 BDS Training Coordinator, was also in attendance to answer questions. There was a lot of discussion about the need for employment and transportation to promote independent living.
On June 11th seventeen self advocates (some former ARC residents) and four supporters from the Adult Multiple Alternative Center (AMAC) attended a training sponsored by SUFU and AMAC. Support and lunch were provided by AMAC. Information about rights from the FYI from SUFU booklet was discussed as the training went into overtime due to the many questions people had. Self advocates were provided with contact information for SUFU, Regional State Advocate, Margaret Rollins, and DRC information, as well as for public guardianship questions.
Objective 2: SUFU will train circles of support (family, friends, caseworkers, guardians and support staff) about issues of importance to people with disabilities so they can listen better, support people to be more independent and so they can be role models for others. At least five trainings will be offered to supporters by June, 2004.
A total of five trainings have been presented by four different self advocates in the Augusta area at Uplift Inc. to train new employees on self advocacy and how self-advocates want to be treated.
A supporter “Rap Session” was facilitated for self advocacy supporters at the annual SUFU conference. Six supporters talked about core values of supporting individuals as well as local groups.
Self advocates presented at the Direct Service Conference in October on Accessing ADA Rights in the Community and Community Inclusion.
In May, an advisor training was offered at the MASS retreat for which SUFU was paid a presentation fee. On June 11, 2004, four supporters at AMAC participated in a training with a SUFU advisor and on June 23, 2004, SUFU advisors presented a training in Gardiner to help new advisors and self advocacy leaders better support local groups.
Objective 3: SUFU will educate people in the public (community members, professionals such as police, public service, doctors, etc.) by teaching them about different kinds of disabilities so they can support people better and to increase community inclusion and acceptance. At least three training opportunities will be offered to the public by June, 2004.
The collaboration between SUFU and Maine Parent Federation in Northern Maine, Taking On Transportation was designed to educate the public.
In October, 2003, a SUFU board member was supported to speak to a class of 14 social work students at USM to share her life story and the challenges she faces.
In May, 2004, two SUFU members and an advisor hosted a table at Mission Transmission in Augusta, to educate graduating high school seniors and other members of the public about self advocacy.
Goal 3: Speaking Up For Us members will have the opportunity to network on a local, statewide, regional and national level to share information, get
to know people, support other self advocacy efforts and promote growth and strength.
Objective 1: SUFU will support self advocates to attend conferences and meetings in New England to gain information to share with others and have opportunities to learn. SUFU will send at least ten people to four meetings by June, 2004.
In October, 2003, three self advocates were supported to attend the annual Advocates in Action conference in Rhode Island. They presented a training on Exploitation and attended workshops as well as connecting with allies and friends from other states.
In November, 2003, seven SUFU members and officers attended a SABE Region 8 meeting in Mt. Sunapee, New Hampshire. The SABER 8 group has changed its name to ‘NEAT’ (North East Advocates Together). The 2 ½ days spent in New Hampshire were full of idea sharing and working together to make this region stronger in self advocacy.
In May, 2004, two self advocates from Maine facilitated sections of the Massachusetts self advocacy group Mass Advocates Standing Strong (MASS) board retreat. Maine self advocates used the opportunity to learn more about self advocate evaluation of advisors and brought back several ideas to their own board for consideration. MASS was impressed with SUFU training work and has invited SUFU to present the Exploitation training for MASS members.
In June, 2004, approximately 60 self advocates and supporters from Presque Isle, Waterville, Augusta, Gardiner, Winthrop, Litchfield, South Gardiner, Pittsfield and surrounding towns attended the Region 3 - 4 2004 Regional Gathering hosted by the Sebasticook Independent Group in Pittsfield. Two guest speakers from the Gardiner group, along with many other self advocates, shared their community inclusion stories and a representative from BDS shared some changes that are going to take place at BDS with the July 1 BDS/DHS merger.
With advisor support, self advocates from the Houlton area have met with the director of Community Living Associates and Presque Isle self advocates have met with the director of supported living at Personal Service of Aroostook and the director of Adult Multiple Alternative Center, in attempts to obtain support and transportation to the Speaking Up For Us annual conference in October, 2004. SUFU will continue to support the self advocates to identify and obtain needed supports.
Objective 2: SUFU will provide technical support to at least two new groups and ongoing support for at least five existing groups to work on projects to meet SUFU goals and objectives.
SUFU Region 3 - 4 is providing technical support to two new groups in Rumford and Farmington, and is working with folks in Waterville to get connected to a group near by or start a new group. Long-term technical support and training were provided to the Lewiston/ Auburn and Gardiner groups to find and hire new advisors, support election of officers, and work on projects that meet SUFU goals and objectives.
Region 3 self advocates have also assisted new groups starting up in Auburn at Creative Work Systems to support advisors in starting groups as well as present self advocacy training and at Leap in Farmington. Support for these groups continues as needed.
Local support was offered in Region 1 for self advocates from Houlton to complete and present a training called FYI from SUFU: Exploitation. Self-advocates from Patten were supported to design and present a training on “Helping Families Let Go”. Support was also provided for a Machias self advocate to design a training about her time spent at Perkins School which was presented at the SUFU conference.
Objective 3: SUFU will plan a 10th Anniversary Celebration for at least 400 self advocates and supporters to provide opportunities for individuals to learn, network, connect with old friends, meet new ones, and have fun by October, 2003.
Objective met to best of ability:
About 300 self-advocates and supporters came together on September 30-October 2, 2003 to celebrate 10 years of self-advocacy in Maine. SUFU was pleased to have a number of guests from Rhode Island’s Advocates in Action helping us with the technical aspects of the event. This conference and previous ones, have been a success in part due to the immeasurable support from OHI, Victoria LaBelle and Dwayne Hall. This conference was in a new location, as well as a day longer, which affected the cost.
As usual, a planning committee was formed and met throughout 2003 (every other month). We met throughout the summer as a whole group, with subcommittees working on particular assignments. The conference planning committee addressed the details of the conference, including location, workshops, cost, events, speakers, menus, hotels, transportation, entertainment, regional meetings, board elections, etc. The conference planning committee will reconvene in 2004 to evaluate the 2003 conference and start planning for 2004.
Conference planning is now underway for the 11th Annual Conference to be held October 13th & 14th 2004 at Sunday River, Bethel, Maine. We are working together with DRC, CCI, and DDC to finalize a new plan to provide Fiscal Agent service for the conference.
Goal 4: Speaking Up For Us will carry out routine business, share information and resources, spread its mission and work toward increasing financial growth and stability.
Objective 1: Speaking Up For Us will conduct regular business through officer’s meetings and other meetings by June, 2004. Officer’s meetings will be held at least bi-monthly.
In spite of being from different geographic areas of the state, SUFU officers met almost every month, usually by conference call and several times in person this fiscal year to solve problems and make business and policy decisions.
Two-day board retreats, planned by the officers, took place in January and May in Bangor, for board members to hear reports and updates, take care of business, review and make decisions regarding policy, elections of officers and goals and objectives.
In January, upon receiving the resignation of the former SUFU Coordinator, the board assigned a hiring committee to hire a new Project Director. This nine-member committee, representing all SUFU regions, met in Presque Isle in February and in Portland in March to conduct interviews and make a hiring decision. They hired Mary Schneckenburger, a former adult education teacher from Litchfield, Maine who began training for the position in mid-March.
Objective 2: Speaking Up For Us will produce two newsletters to get the word out about issues and events. The first will be released by September 2003, the second by May 2004.
Objective partially met:
Due to circumstances beyond the control of SUFU members, only one issue was published this fiscal year, about 14 pages of articles and announcements. This newsletter was sent to our mailing list. A list of articles for our next issue has already been started.
Objective 3: Speaking Up For Us will hire a grant writer for assistance to apply for at least 10 grants by June 2004.
Objective in progress:
As of the close of this fiscal year, SUFU is waiting to adjust to our new fiscal agent before hiring a grant consultant, however a SUFU advisor has taken responsibility to begin some of the necessary research.
Mary Schneckenburger, Director