New network will build Minnesota self-advocacy

Ordinary folks have more clout when they band together. This spring, self-advocates and their allies from across Minnesota have taken that wisdom to heart, as they join forces to launch a new statewide network of self-advocacy groups, Self Advocates of Minnesota (SAM).

Organizers expect the new network to assist persons with developmental and other disabilities assert their right to self-determination and to increase individual and collective power to live the lives they want and deserve. The network’s goals are to strengthen local self-advocacy groups in three ways: by increasing their ability to raise funds, by increasing their influence in local and regional affairs, and by increasing their individual and group skills through exchange of expertise between fellow SAM members.

The new SAM network is the result of a 20-month process coordinated by St. Paul-based Advocating Change Together (ACT). Mary Kay Kennedy, ACT co-director, sees fund-raising as a key motivator for the new network. “I think the biggest difference this network will make will be our ability to collectively secure resources to support and sustain our work. Social change work takes money; there is no way around it.” Cliff Poetz, a member of the SAM organizing committee and member of People First Minnesota, agrees. “The sooner we get SAM going, the sooner we can start using our collective power to go for broad-based funding at the state or federal level. Look at Wyoming. Their statewide group gets $100,000 annually. Minnesota self-advocates can do that—or better.”

Crookston resident Gordie Haug, staff at Options Resource Center for Independent Living, and a long-time organizer with the disability rights group ADAPT, is playing a lead role in organizing SAM’s northwest region. Haug’s history with the new network is typical of the grassroots flavor of SAM. “I got involved a year and a half ago when ACT sent out a mailing across the state asking if anyone was interested in talking about forming a statewide structure for self-advocacy. Myself and another ADAPTer went to that first meeting, in March 2005, down at Mystic Lake. At the end of that meeting, they asked if anyone was interested in taking the next steps. I thought it was a good goal and a good group, so I ran it by my boss and he agreed that we should go forward. So now, 18 months later, here we are launching SAM.”

Bemidji self-advocate Don Larson, who has also been involved from the beginnings, is proud of what the organizers have been able to do. “If I didn’t think it was worth it, I wouldn’t have gone to all those meetings,” said Larson. “You have to put your heart and soul into it. For me, if I believe in something, I’ll go all the way. I don’t back out. I’m proud of what we’ve been able to do in what really is a short amount of time. We’re putting our names behind something we believe in.”

Kennedy also highlighted the role SAM will play in helping separate groups feel a part of something bigger: “The lack of a statewide self-advocacy structure in Minnesota has left many groups feeling isolated and disconnected.” Haug and Larson agree. “The main challenge in our area,” says Haug, “is overcoming isolation: getting the word out to small rural communities.” Larson notes, “The northwest region is the largest region [in square miles] in the state, yet there are only three communities that have self-advocacy groups. There is a glaring need to bring new self-advocates in, and start new groups. SAM is going to provide resources to help up us do that.”

Larson knows what it takes to start new groups. “When my wife and I moved up north in 2003, we missed being part of a self-advocacy group. We liked going around the state with ACT doing self-advocacy training, and we wanted to get self-advocacy started in Bemidji. We talked to Cass at Arc Headwaters and worked together to get a self-advocacy group going. I’m proud of being part of getting a group started. That makes me a leader in self-advocacy.”

Breaking the isolation has been a key result of the organizing process of SAM, notes Kennedy. “The great thing about the SAM network,” she said, “is that folks are feeling connected and empowered by working together to address the problem. The energy and excitement about having a coordinated statewide effort has self-advocates and allies charged up.” Haug is also positive about SAM’s prospects for success. “If we can get some momentum going through good communication, I think we’ll make some progress. Everybody likes to be involved in something if things are happening.

The network has already received funding from the Minnesota Governor’s Council on Developmental Disabilities to begin operations in two (of six) statewide regions. Some of SAM’s outstate organizing will be done through a contract with People First of Minnesota. “The SAM plan helps People First Minnesota get out and spread the word about self-advocacy in two regions of the state,” said Poetz.

Part of the excitement apparent in those involved in SAM is that the process has been participatory and grassroots. In fact, SAM is not a new organization, but rather a network to support and strengthen existing groups. Self-advocate Brian Heuring of Litchfield stresses the collaborative nature of the new network. “The SAM network was developed by self-advocates; I am very, very proud to be part of the work. Self-advocates came up with the ideas, and that is the best part. I attended almost all of the meetings and am proud of what we have done. You could say that we are making history in Minnesota.”

The seeds of SAM were planted in the work of the Alliance for Full Participation, a coalition that came together in 2005 to assess the state of self-advocacy in Minnesota. As Steve Larson, executive directory of the Arc of Minnesota remembers, “We did an e-scan [survey] and quickly realized that we need a way to both improve the funding picture for the various groups working in self-advocacy and unify our separate efforts. For many years Arc has sponsored a number of People First chapters throughout the state. But this e-scan made it clear to all of us involved in AFP that self-advocacy needs a more organized statewide presence to reinvigorate what we are doing separately.”

Indeed, that e-scan sparked the work that has led to the formation of SAM, and the AFP members seem to be pleased with the result. “Arc strongly supports the new SAM network that has emerged,” said Larson. “We see it as a wonderful opportunity to complement what we’re all doing locally, and believe that this new partnership can take us all, separately and together, a step further toward being more powerful and effective.”

Persons with intellectual and developmental disabilities (ID-DD) have had no consistent statewide funding for self-advocacy or a method of formal communication within the state. Minnesota’s funding for disability services is county-based. The majority of counties have no funds to support empowerment and self-determination activities for people with developmental and other disabilities. While over a billion dollars per year is spent on disability related services, little attention is paid to empowering people to control those services.

Larson praised the Governor’s Council for its support of SAM, “We’re glad they prioritized funding for self-advocacy and provided this initial funding to help get SAM up and running in two regions.” Organizers are currently working at the capitol to secure funding for full operation