Turning Rights Into Reality: How Guardianship and Alternatives Impact the Autonomy of People with Intellectual and Developmental Disabilities

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June 10, 2019

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SCOPE: NCD undertook this report to increase the understanding of guardianship and its impact on the lives of people with intellectual and developmental disabilities (ID/DD) and their families. In this report, NCD examines why people with ID/DD are at increased risk for becoming subject to guardianship as adults, and how that impacts their ability to benefit from civil rights laws aimed at advancing the self-determination and opportunities available to people with ID/DD, including the Americans with Disabilities Act, the Developmental Disabilities Act, the Individuals with Disabilities Education Act, and the Workforce Innovation and Opportunity Act. The report examines how people with ID/DD are treated differently than other adults who are the subjects of guardianship proceedings, including in several states that have separate guardianship laws for people with ID/DD. The findings and recommendations are based on the available data on guardianship for people with ID/DD, an in-depth examination of the experiences of individuals with ID/DD in Washington, DC, and information collected directly from stakeholders across the nation.  

SUMMARY: Guardianship is the process through which an adult can be found legally incapable of making decisions for him or herself and another adult is appointed to make decisions on behalf of that individual. Individuals with ID/DD are at greater risk of being subject to guardianship than other adults because of widely-held stereotypes about their ability to make decisions and function as adults. The report's major findings include:

  • People with ID/DD currently are at higher risk for guardianship because of the school-to-guardianship pipeline.
  • A minority of states have guardianship provisions that are applicable solely to people with ID/DD, as opposed to other alleged disabilities. While some statutes incorporate additional procedural safeguards, these statutes do not always advance the procedural due process rights of people with disabilities.
  • Despite the existence of restoration of rights procedures in many state laws, many people with ID/DD and their families are unaware of those options, nor of the broad array of less-restrictive options.
  • There is a dearth of reliable data on the number of adult abuse, neglect or exploitation cases in which the perpetrator is the court-appointed guardian of the victim.

The report concludes with recommendations for policymakers.