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Independent Living News & Policy from the National Council on Independent Living

NCD Report Examines “Civil Death” of the Rights of People with Disabilities and the Elderly under Guardianships, Calls on Department of Justice to Ensure Full and Fair Due Process Rights

Source: NCD

The National Council on Disability (NCD) – an independent federal advisory body – has released 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.

“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 for People with Disabilities, 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. Read a summary of findings and recommendations at


  1. Sarah Carmany says:

    Guardianship or guardianshit as I like to call it is no good for people with disabilities. Its a barrier and a hendrence for people with disabilities. I know being a person with a disability I’ve seen first hand how guardianship has abandon me personally through out my life. First was through grade school and my IEP. My parents went to my IEP in elementary school and intermediate school. But when I got into junior high and high school my mom and dad both went to my IEP and when they came home and mom looked me in the face and said to my face and told me that it that she wasn’t going to another IEP ever again because she was being analysed by the teachers. I’m like but mom and she just walked away like she didn’t want to hear anymore of how I felt about them. It made me angry. From then on I started doing my IEPs all on my own. So thats one example how guardianshipor guardianshit has abandon me. Then another thing about guardianship or guardianshit that I don’t like is the pushiness that is there even if you know that you don’t need something and you tell them no and they still force you to do something anyways.i have a prime example of that. My example of that is when I was a senior in highschool and my transition IEP and was forced or pushed into going into post secondary education which I didn’t need. I went throught out the whole school day and no one ever said anything about a meeting throught out the whole school. Then the bell rang at the end of the school day and I went and got on the bus to come home. I was no sooner on the bus then the special education teacher comes out to the bus and says theres a meeting today. I looked at her confused and said meeting what meeting? Then she told me I had a meeting she said that it won’t. Then I degrudgingly got off the bus and went in. It was me my special education teacher my social worker and a transition coordinator that were in the meeting together. They talked to me about going to the post secondary education program called Young Adult Program which was a post sencond education for young adults who didn’t complete all their objectives for graduation and have to go there finish their graduation objective requirements.well anyway I knew that I worked hard and could have gotten my doploma but the these professionals won’t have it. When they talked to me about going to YAP i told them no. They won’t take no for an answer. They my special education teacher, my social worker, and the transtion coordinator versus me. They forced me to stay in the special education room and told me face to face that this meeting is not over til I signed the papers. I kept telling them no and they just kept telling me that this meeting isn’t over until I signed the papers. I put my head down on the table and told them I didn’t need to to go to YAP. These professionals told me that we’ll sit here all day until those papers are signed. I thought about my mom and dad what would happen if raymond my brother came home on his owned. So I degrudgingly and was angry signed the papers and ran to catch the bus all the way to the intermediate school and barely made it to the bus but I did get the bus by the skin of my teeth. I went home and was upset and told my mom what happen and she told me that she talked to the school on the phone and she told them no to and they wouldn’t accept the word no from her either. So another example of me try to tell professionals no and being ignored cause they think they know better. So when I went to YAP and I proved to them that i had all my objectives the looked at me and asked why are you here? I sat and looked at them right in the eye and told i told them i told my school no they wanted me here now do what ever you want with me. This kind thing is why I hate Guardianship or guardianshit and think it should be restricted or illeagalize for people with disabilities that are over the age of 18 or older unless they need it. These are prime examples of why guardianship needs to be restricted. I also want to do things like live in a house or have a dog or drive. Or go to school and and guardianship or guardianshit always tells us no. Thats not right. Guardianship or guardianshit just ignores us and pushes their way on us anyways. I dislike it with a passion. I wish we could for adults with disabilities could restrict it so it does have such a strong thresh hold over us. Please lets work on this aspect please please pretty please. I just get tried of being in one spot on the sideline all the time. Plus guardianship and professionals also puts people like me in this over peotective cloud and smuthers us to the point that we are afraid to try or do new things.please lets resolve this.

  2. Guardianship forced on people in nursing homes don’t need them half time. Many nursing homes sabotaging physical or mental of person just to force them into guardianship. Seen this happen too many times.

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