The purpose of this initiative is to increase the number of individuals with intellectual and other developmental disabilities (I/DD) and their families in North Carolina who are aware of and make use of Supported Decision-Making (SDM) and other alternatives to guardianship.
NCCDD’s Making Alternatives to Guardianship a Reality in North Carolina initiative has publications to share with others:
Watch these videos created by UNC Cares, sharing the stories of people in North Carolina touched by guardianship issues:
Check out this video, featuring Tylor Freeman’s story about regaining his rights!
Why is NCCDD funding this initiative?
Like other states, guardianship in North Carolina has received increased attention and scrutiny as many individuals fall under full guardianship without a thorough assessment of their abilities to make life decisions and do not fully understand their rights or that less restrictive alternatives are available.
As noted by the National Council on Disability (2019), “For a variety of reasons, youth with I/DD are disempowered by schools actively encouraging guardianship to the exclusion of less restrictive alternatives and not providing families and students with sufficient information about the availability of a full continuum of decision-making supports.”
From a different direction, individuals with intellectual and other developmental disabilities (I/DD) who live in long-term residential settings such as group homes and state developmental centers sometimes find that their guardians block their decision to move to the community. It is imperative that these concerns are balanced with the rights of the individuals to make choices to the fullest extent possible.
This initiative builds upon the five-year Collective Impact initiative, Rethinking Guardianship, and its successes as a statewide workgroup that has, with support from UNC Cares at the School of Social Work in Chapel Hill, established strong partnerships with a diverse set of stakeholders, including court officials, attorneys, guardians, state aging and disability agencies, advocates, and individuals and families affected directly by guardianship. Learn more at: rethinkingguardianshipnc.org See the archived Rethinking Guardianship initiative webpage here.
This initiative supports NCCDD's Goal 2 of the current Five Year Plan: Increase community living for individuals with I/DD.
What are the major goals and objectives?
The purpose of this initiative is to increase the number of individuals with I/DD and their families in North Carolina who are aware of and make use of Supported Decision-Making (SDM) and other alternatives to guardianship.
Continue to further the work of NCCDD’s previous Rethinking Guardianship initiatives so that all stakeholders in the guardianship system are educated about guardianship; less restrictive alternatives to guardianship, especially Supported Decision-Making; and best practices so that individuals with I/DD can have more control over their daily lives.
Encourage more guardians to support individuals living in long-term residential facilities to transition into a less restrictive setting with less restrictive decision-making constraints.
Help everyone touched by the guardianship system understand that everyone, regardless of ability, relies on decision-making supports of some kind from family members, friends, and other individuals they interact with on a daily basis.
What activities will this initiative set out to do?
Expand and facilitate the Rethinking Guardianship Workgroup and Steering Team to encompass and guide all aspects of this initiative throughout the three-year grant period.
Continue and further the Collective Impact model that supported the Rethinking Guardianship initiatives to achieve systems change in the area of reforming North Carolina’s guardianship system and increasing awareness of alternatives to full guardianship.
Develop an on-line, interactive training on SDM and other less restrictive alternatives, as described in the “Rethinking Guardianship: Introduction to Options” brochure.
Develop 6-8 on-line, interactive training modules during Years One and Two to be rolled out across North Carolina as they become available throughout the three-year period.
Trainings will be made available in both English and Spanish.
Promote the practice of using SDM and other alternatives to guardianship among youth with I/DD transitioning to adulthood and individuals in long-term residential facilities transitioning back to the community.
Increase outreach and educational opportunities, including the methods and population reached across North Carolina, to include people with I/DD, families and other stakeholders as well as those in North Carolina’s Hispanic/Latino/Latinx community.
Evaluate state interest and readiness for possible SDM legislation.
What has been achieved to date?
Established a Steering Team for the initiative that has meets monthly and established the Common Agenda for the initiative.
Hosted Rethinking Guardianship Statewide Workgroup meetings quarterly, the most recent, “Guardianship Rights Legislative Day,” in Raleigh on April 25, 2023.
Continued relationship with national consultant, Jonathan Martinis, and engaged other keypartners, such as The Arc of North Carolina and First in Families of North Carolina.
Led Supported Decision-Making Working Group for the 4th National Guardianship Network Summit, May 2021.
Provided “best practice” training materials to the NC Department of Public Instruction (DPI) re: Supported Decision-Making, aimed at NC Exceptional Children’s teachers and suggested revisions to the Local Education Agency (school district) transfer of rights brochure.
Disseminated a Supported Decision-Making survey to create awareness of SDM and understand learning needs – 293 individuals responded – and completed post-grant survey of 127 people.
Made detailed recommendations to the Olmstead Plan, which was finalized in January 2022. As a result, the plan includes “Exploring other ways, besides guardianship, to help people make decisions” as one of its eleven priorities. The action taken by RG MAR-NC was highlighted by Mathematica during the June 2023 meeting of the Olmstead Plan Stakeholder Advisory group.
Completed the development of a Supported Decision-Making: Formal and Informal training and 12 educational PDF documents on less restrictive options all available in English and Spanish.
Produced six videos (two in the editing process) highlighting five individuals with I/DD and their stories of self-determination as well as others telling their story of guardianship and less restrictive options.
Completed “best practice” curricula for NC DSS public guardians emphasizing self-determination and a range of decision-making supports in additional to excellent guardianship practice.
Made numerous presentations, including the 2021 and 2022 Exceptional Children Conference with 1,550 conference attendees; the Statewide DSS Adult Services Meeting with 550 Attendees and the MFP Roundtable with 320 attendees.
Completed and released “Supporting Choice & Self-Determination in NC: A Guide” in April 2022 and translated it into Spanish.
Released new “Supporting Choice and Self-Determination” videos (English & Spanish) in 2023.
Through collaboration with the NC Bar Association and the NC Conference of Clerks, the “Guardianship Rights Bill” (Senate Bill 308) passed through the Senate and the House amended as Senate Bill 615, and Governor Roy Cooper signed it into law on September 28, 2023.
What long-term changes are expected as a result of this initiative?
More individuals with I/DD and their families in North Carolina will be aware of and make use of Supported Decision-Making (SDM) and other alternatives to guardianship.
More professionals working with people with I/DD and working in the North Carolina’s guardianship system will understand SDM and other alternatives to guardianship.
This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.