Baltimore, MD – The National Council on Disability (NCD) – an independent federal advisory body – today will release and discuss the findings and recommendations of a seminal national report that thoroughly examines guardianship – 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 – in view of the estimated 1.3 million Americans subject to guardianship and the goals of longstanding national disability rights policy. The report release presentation will occur in Baltimore, Maryland at the Jacobus tenBroek Disability Law Symposium.
“Former Congressman Claude Pepper famously said of guardianships, ‘The typical [person subject to guardianship] has fewer rights than the typical convicted felon… It is, in one short sentence, the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty,’” said Phoebe Ball, NCD Legislative Affairs Specialist who worked extensively on the report. “NCD chose to examine this topic at depth given the implications for someone’s civil rights and liberty under guardianship – that an individual is losing the authority to make decisions regarding where to live, whether to work and where, where to travel, with whom to socialize, and how to manage money and property. We need to explore alternatives to guardianship such as supported decision making that enable people to avoid this civil death.”
The findings and recommendations in the report, Beyond Guardianship: Toward Alternatives that Promote Greater Self-Determination, 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.
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 and rely upon capacity determinations that 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.
“People with disabilities should be given the maximum opportunity to make decisions for themselves and to live the lives that they want to live,” said Neil Romano, Chairman of NCD. “At NCD, it is our responsibility to offer policymakers the best information available so that can make decisions designed to move people with disabilities toward full inclusion and equality in our society and help them fully realize their American birthright of life, liberty, and the pursuit of happiness.”
For each major finding, NCD offers recommendations to federal and state policymakers to address areas of concern.
A small sampling of the report’s recommendations includes:
— The Department of Justice (DOJ), in collaboration with the Department of Health and Human Services (HHS), should issue guidance to states (specifically Adult Protective Services [APS] agencies and probate courts) on their legal obligations pursuant to the Americans with Disabilities Act (ADA).
— The Administration for Community Living (ACL) currently funds the National Resource Center for Supported Decision-Making and several demonstration projects at the state and local levels. These grants should be expanded to be able to fund more geographically- and demographically-diverse projects and pilots that specifically test SDM models and use SDM and the court systems to restore people’s rights as a matter of law, particularly for people who are older adults with cognitive decline, people with psychosocial disabilities, and people with severe intellectual disabilities.
— DOJ should make funding available to train judges in the availability of alternatives to guardianship including, but not limited to, supported decision making. This training should also include information about the home and community-based–services system and the workforce development system so that judges understand the context in which decisions are being made by and for people with disabilities.
— A state guardianship court improvement program should be funded to assist courts with developing and implementing best practices in guardianship, including training of judges and court personnel on due process rights and less-restrictive alternatives.
Report: Beyond Guardianship: Toward Alternatives that Promote Greater Self-Determination is available for download at: http://www.ncd.gov/publications/2018/beyond-guardianship-toward-alternatives.