New federal research examines guardianships of people with intellectual, developmental disabilities, finds school-to-guardianship pipeline

June 10, 2019

WASHINGTON, D.C. – In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a “school-to-guardianship pipeline” that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decision-making supports.

Under guardianship, an individual can have the following rights removed: the right to marry; the right to determine one own’s friends; the right to vote; the right to seek or retain employment; the right to consent to a medical procedure, including a sterilization or abortion; the right to drive; the right to decide where to live; and many others.

In its latest report about these and other related findings, the National Council on Disability (NCD) – an independent federal agency that advises Congress, the President, and other federal agencies, found that school officials may be biasing parents toward pursuing guardianships over their adult children with disabilities because of the manner in which they are conveying information – and without understanding the legal implications of guardianship. Schools are the number one referral source for guardianship and a full 58 percent of people with ID/DD ages 18-22 receiving publicly funded services have guardians, most of whom will remain under guardianships for decades to come – many unnecessarily.  

NCD’s newest research examines whether the increased risk for people with ID/DD being under guardianships may be linked to the different ways in which states apply their guardianship laws, as well as to assumptions about the abilities of people with ID/DD to fully experience the dignity of risk. The research goes on to examine how being under a guardianship impacts one’s ability to benefit from key civil rights laws.

NCD’s report, which relied heavily on key informant interviews and analysis of applicable existing data sets, also provides an in-depth analysis of the experience of people with ID/DD under guardianships in Washington, D.C., before and after recent guardianship reforms.

The report concludes by offering policy recommendations to states, the Social Security Administration, the U.S. Department of Education, the U.S. Department of Justice, the U.S. Department of Health and Human Services, and state courts.

Among the recommendations, NCD calls on DOJ to issue guidance to states on their legal obligations under the ADA in the context of ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and calls on ED to do more to promote its existing guidance that recognizes the serious implications of guardianship and encourages schools to recognize less restrictive decision making supports for adults in special education.

Read the report at ncd.gov/publications/2019/turning-rights-into-reality.

About the National Council on Disability (NCD): First established as an advisory Council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.