Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities

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Man with developmental disabilities with buzz cut brown hair and wearing a red and black plaid flannel shirt over a black t-shirt holds his hands in front of his chest. He stands in front of a rose garden with a white picket fence in the background.

March 22, 2018

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SCOPE: NCD undertook this report to foster a greater understanding of guardianship within the context of disability law and policy; to examine the treatment of people with disabilities within the legal system that establishes guardianship; to examine the use of alternatives to guardianship such as supported decision-making; and to make recommendations that will help align the use of guardianship and decision-making alternatives with the Americans with Disabilities Act (ADA) with particular focus on the integration mandate. The report's findings and recommendations are the product of qualitative research on the experiences with guardianship and decision making alternatives of people with disabilities, their families, and professionals within the guardianship system gleaned through interviews; in addition to an extensive review of relevant scholarship and recent studies.

SUMMARY: Guardianship is the process through which an adult can be found legally incapable of making decisions for him or herself and another adult appointed to make decisions on behalf of that individual. There are an estimated 1.3 million people subject to guardianship in America. Amongst its key findings, NCD's Beyond Guardianship study found that:

  • Guardianship is often imposed when not warranted by facts or circumstances, because guardianship proceedings often operate under erroneous assumptions that people with disabilities lack capability to make autonomous decisions.
  • Capacity determinations often lack sufficient scientific or evidentiary basis.
  • Although guardianship is considered a protective measure, courts often lack adequate resources, technical infrastructure, and training to monitor guardianships effectively and hold guardians accountable, which at times allows for guardians to use their positions to financially exploit people subject to guardianships or subject them to abuse or neglect.
  • People with disabilities are often denied due process rights in guardianship proceedings. 
  • Although most state laws require consideration of less-restrictive alternatives, courts do little to enforce those requirements.
  • Similarly, though every state has a process for the restoration of one’s rights lost through guardianship, the process is rarely used.
  • There is a lack of data on existing guardianships and newly filed guardianships, which frustrates efforts of policymakers to make determinations about necessary areas for reform.