Beyond Guardianship: From Where I Sit

Over the past few months, Kathy Bates, who writes the IOD’s blog, From Where I Sit, has been writing about a complicated topic – Guardianship. Her 4-part series on Guardianship looks at big picture issues, guardianship laws, and other models. She also shares outside reports, articles, and resources. We’ve reprinted her introduction to the topic here, but you can read the full series on the blog.

The appointment of a guardian or a conservator removes from a person a large part of what it means to be an adult: the ability to make decisions for oneself.  We terminate this fundamental and basic right with all the procedural rigor of processing a traffic ticket.
- Anonymous

As I was reading the report entitled Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities, I was struck by the relative simplicity of the process to strip a fellow citizen of their civil rights. It looks at alternatives to guardianship and how current statutes relate to disability law and public policy. It also examines the treatment of people with disabilities subject to guardianship.

The report was recently submitted to the president by the National Council on Disability (NCD).

Founded in 1978, the NCD is an independent Federal Agency, charged with advising the president, Congress, and other Federal Agencies. The release of the Beyond Guardianship Study is a necessary tool to inform the public about guardianship options. Advancements in civil rights law under the Americans with Disabilities Act (ADA), and the fact that the population is aging, guardianship issues are more pertinent than ever.  

As usual, with most issues I research and write about, for this blog, I learn some important information but often that information leads me to more questions than answers. This is definitely true with this topic of guardianship. For example; Does the person subject to guardianship have the opportunity to fully understand how Guardianship affects their life? Are they represented vigorously by a lawyer? How much does the judge know about a particular disability?

Let me be clear, I believe that just about everyone can at least participate in decision making for their own lives, with the right support.  I’ve been working with people who are labeled with an intellectual disability for over thirty years now, and most of them live safe, productive and happy lives while making decisions for themselves. Intelligence and compacity are very difficult to measure accurately because IQ tests are bias and do not usually consider life experience.

I believe there is dignity in risk. We learn from our mistakes, and if we are not allowed to make them, we won’t ever grow. I bounced a check once in college after paying the $20.00 over draft fee I never bounced another check. Guardianship can take away that right to make a bad decision, which by the way has nothing to do with disability. In disability world, people can be held to a much higher standard when it comes to making mistakes. This is because we are often surrounded by so many service providers and social workers, who all have files on us; the more people who know about our mistakes, the bigger they become. This isn’t such an issue in the real world.

All that said, I do believe that guardianship is an important tool to keep some individuals safe and healthy. That is a judgment call that I hope I never have to make for someone I love and, I hope no one ever has to make that decision on my behalf.

Since guardianship rules vary from state to state and there is not a clear process for record keeping, reforms to the system have been difficult to make. There is a clear need for more options within the system. The issue of removing someone’s civil rights through guardianship is too big to cover in one blog post, that why I’ve decided to take an in-depth look at guardianship issues and alternative programs in my next three blogs. Next month, using the NCD Beyond Guardianship Study as a reference, I’ll discuss the basics of guardianship and disability policy.

Additional Resources:

Additional Articles in the Series: