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Making Alternatives to Guardianship a Reality in North Carolina

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.

Why is NCCDD funding this initiative?Goal 2 of the new Five Year Plan: Increase community living for individuals with I/DD.

  • 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 met monthly starting in July 2020.
  • Recruited new members to the Steering Team and Workgroup, including self-advocates and individuals representing the Hispanic/Latinx community.
  • Initiated relationship with national consultant, Jonathan Martinis, and engaged other key partners, such as The Arc of North Carolina and First in Families of North Carolina.
  • Provided “best practice” training materials to the North Carolina Department of Public Instruction (DPI) re: Supported Decision-Making, aimed at North Carolina Exceptional Children’s teachers and suggested revisions to the Local Education Agency (school district) transfer of rights brochure.
  • Hosted Rethinking Guardianship Workgroup meetings in September 2020 and January 2021.
  • Revised the Collective Impact common agenda from the previous Rethinking Guardianship initiatives to fit this initiative’s goals and objectives.
  • Disseminated a Supported Decision-Making survey to create awareness of SDM and understand learning needs that 293 individuals filled out. The State of Kansas is adapting this survey for use there.
  • Presented during the Olmstead Plan Stakeholder Advisory meeting on October 28, 2020.
  • Completed the development of a Supported Decision-Making: Formal and Informal training as the first educational module for this initiative.
  • Completed 12 educational PDF documents on SDM and other commonly used alternatives to guardianship and uploaded to the website.
  • Produced a video of two individuals with I/DD and their stories of self-determination as well as three additional videos telling the story of individuals impacted by guardianship and less restrictive options.
  • Completing “best practice” curricula for NC DSS public guardians emphasizing self-determination and a range of decision-making supports in additional to excellent guardianship practice.
  • Led Supported Decision-Making Working Group for the 4th National Guardianship Network Summit, held every ten years to shape national and state policies on guardianship and less restrictive options.

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.

How can I get involved?

Contact Linda Kendall Fields at lkfields@email.unc.edu

 

Who is the contractor?

NCDHHS logo

UNC School of Social Work

 

Who can I contact for questions?

Grant Administrator:  Linda Kendall Fields at lkfields@email.unc.edu

NCCDD: Philip Woodward, Systems Change Manager, philip.c.woodward@dhhs.nc.gov

 

Additional Resources

Click here to download a pdf of the new initiative: Making Alternatives to Guardianship a Reality in North Carolina

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North Carolina Council on Developmental Disabilities
820 South Boylan Avenue
Raleigh, NC  27603
Info@nccdd.org
919-527-6500 (voice/tdd)
800-357-6916 (voice/tdd)
800-357-6916 (TTY)
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