Imagine that someone else could make every single decision about your life for you. Maybe that person is a parent, maybe they’re a stranger, maybe they’re someone you don’t like very much, and they can decide what you eat, who you see and spend time with, where you live, what medications you take, what job you do, and how you spend your money. This is the reality of being in a conservatorship or guardianship for untold thousands of people in the United States.
Sometimes people seek conservatorships in an effort to protect a loved one with a disability. However, conservatorships carry real risks and can cause real harm. Because of this, conservatorships should be as a last resort, imposed sparingly, lifted promptly, and overseen diligently.
Unfortunately, this is not the reality in the United States today. Too often, conservatorships are granted as a “first resort” when a person with disabilities reaches adulthood or encounters difficulties, or experiences age-related disabilities. Instead of so many conservatorships, we should have systems in place for people with disabilities — like people without disabilities — to live their lives with support and without losing their rights.
Conservatorships are a systemic disability rights issue because of the ease with which disabled people can be stripped of their rights under conservatorships, and the extraordinary difficulties they face getting those rights back.
In a conservatorship or guardianship, a judge takes away the civil liberties from one person and gives someone else the power to make these choices instead. It is the court weighing into the person’s life and saying you, as a person with a disability, are no longer free to make decisions about yourself and livelihood — such as where you live and how you support yourself — and we are putting someone else in charge of making those decisions.
There are many less intrusive, less dangerous ways for people to access the support they need without being placed under a conservatorship. Conservatorships should be the last resort when all other support options have been tried. Sadly, this is too rarely the case.
Recently, there has been increased public attention around conservatorships because of Britney Spears’ case. We don’t know the details of Britney Spears’ conservatorship, which has been in place since 2008, but while Spears’ conservatorship has gotten attention because of her fame, her conservatorship appears, in many ways, very typical of the experiences of untold people across the country.
We see people nationwide who get into conservatorships and cannot get out of them. Spears is just one of the estimated 1.5 million people with disabilities nationwide who have lost their rights to make choices about their money, their medical choices, whether they can access the internet, among other day-to-day life choices, and who have almost no chance of getting those rights back.
People end up under conservatorships or guardianships based on a wide range of disabilities, including psychiatric disabilities, developmental or intellectual disabilities, age-related disabilities like dementia, and other types of disabilities. But there are many less invasive, more protective systems for people with disabilities to get support in their lives without giving up their rights or putting their fate in the hands of strangers. These alternatives to conservatorship include powers of attorney, advanced medical directives, releases to share medical and educational information, and supported decision-making.
All of these alternatives allow people with disabilities to get support in directing their own lives, just like people without disabilities do. We all ask friends for advice, we research issues, we talk through pros and cons. People with disabilities should have the same opportunity to use these systems, with assistance and support, and without a sacrifice of their civil rights and liberties.
The ease with which people get trapped in conservatorships is particularly troubling because of the risks and harms of conservatorships. People under conservatorships are at risk of financial, physical, and emotional abuse, neglect, and exploitation. And even when there isn’t abuse, conservatorships limit a person’s ability to advocate for themselves, to learn from their decisions and mistakes, and to grow and develop. There is harm in being told that your opinions, your likes and dislikes, don’t matter. It actually makes it harder to protect yourself from abuse or neglect. So in any conservatorship, we would want to know that the real risks (and benefits) of both conservatorship and its alternatives have been seriously weighed.
All people with disabilities have a right to lead self-directed lives and retain their civil rights, and to access support, education, and guidance in doing so. We must fight against the unnecessary and dangerous removal of disabled people’s civil rights, and ensure conservatorships are imposed only as a last resort.
