LEND Field Experiences in the DD Network

In the state of New Hampshire, the DD Network includes the Institute on Disability (IOD) as the UCEDD, the New Hampshire Council on Developmental Disabilities (NHCDD) as the Council, and the Disability Rights Center (DRC) as the P&A.  The parallel organizations in Maine are The University of Maine Center for Community Inclusion and Disability Studies (CCIDS), the Maine Developmental Disabilities Council (MDDC), and Disability Rights Maine (DRM). Additionally, Maine’s network includes a self-advocacy group, Speaking Up for Us (SUFU).  The history and the degree of connection between the DD Act organizations vary by state. Dr. Alan Cobo-Lewis, Director of the Center for Community Inclusion and Disabilities Studies (CCIDS), describes the relationship among the partners in Maine as a “tight network.”  Executive directors convene bi-monthly meetings to track bills, confer on testimony and work together to develop strategies to address relevant issues.  Passing legislation reducing restraint and seclusion in schools and addressing the waitlist for Home and Community-based Services are two ongoing issues being addressed in Maine.  With regard to restraint and seclusion, Dr. Cobo-Lewis notes just how this collaboration can play out:  

“When a relevant bill comes up, all the partners give each other a heads up… With restraint and seclusion, the [Developmental] Disabilities Council was interested in reducing the practice not just reporting on it. They funded a project with a community agency to implement an intervention and then they hired us, the UCEDD, to be the evaluator of the intervention.” 

In New Hampshire,  Dr. Kelly Nye-Lengerman (left), the Director of the Institute on Disability (IOD) aspires to support this type of coordination and interconnectedness among New Hampshire’s Act Partner organizations. 

“I think we are well on our way.  For instance, many of the grants that we write, such as the Living Well Quality Grant, include our DD Act Partners.  We also have a NH Quality Council, and all the DD Act Partners along with others are key members of that group.”  

One of the opportunities Dr. Nye-Lengerman sees in her position as the IOD Director has been to identify its role in relation to the other Act organizations.  She explains: “UCEDDS are very unique from state to state, and so too are the DD Act Partner connections.”  Dr. Nye-Lengerman recently came from Minnesota where she described the relationships among the three Act partnerships as “collegial and complimentary but not always as coordinated as we could be.”  In New Hampshire, her goal is to clearly define the role of the IOD for state and DD Act partners.  With support from executive directors at both the NHCDD and the DRC, she envisions a fresh and strengthened voice for the IOD.  Additionally, Dr. Nye-Lengerman is giving more attention to self-advocacy within the state’s DD Network.  Over the last six months, the DD Act Partners have funded a liaison position to work with two state self-advocacy groups to set priorities in the self-advocacy community. Dr. Nye-Lengerman sees a future in which the relationship between current DD Act Partners and self-advocates will be more coordinated, supportive, and collaborative, similar to the relationships the DD Act partners share in Maine.  

Despite the differences between the Maine and New Hampshire’s DD Networks, the overarching goal of these relationships is the same: to promote self-determination, independence, productivity, and inclusion in all aspects of community life for persons with disabilities and their families.  For NH-ME LEND trainees, these partner organizations provide rich and meaningful experiences in leadership training.  Whether working on a specific topic issue such as restraint and seclusion at the DRM, exploring the history of disability through the MDDC, engaging in policy assessment and analysis at the DRC, or developing testimony for a bill at the NHCDD, trainees are building skills with Act Partners that support a new generation of leaders for the disability community.