Britney Spears revealed in a court hearing this week some of the horrific realities faced by people living under legal guardianships and conservatorships in the U.S. — but perhaps the most shocking part is the idea that, like Britney, most individuals with guardians don't realize they have the right to challenge the guardianship they live under.
Disability advocates have for years been sounding the horn on long overdue changes that they say need to be made within our guardianship programs — and thanks to one of the most iconic voices of the Millennial generation, it appears people are finally listening.
This feels jarring for some. Guardianship or Conservatorship, the legal process to remove rights from individuals that have been deemed incompetent, can take different forms, but all do the same thing: removing the ability to self direct one's life. These systems vary across states, but what remains constant is the restrictive hold they place over individuals.
For individuals with disabilities, guardianship has long been the first choice for families looking to protect and support their loved ones. With this idea of protection, comes the reality of guardianship -- it has a way of cinching itself around an individual, stripping away any sense of self-determination and choice in both the large and small decisions governing everyday life.
"Guardianship is a very powerful tool. It's not always necessary to use it against the person," said Morgan K. Whitlatch, Legal Director at Quality Trust for Individuals with Disabilities. "We should be trying to make it easier for people's rights to be restored and give them due process."
In 2012 Jenny Hatch, a young woman with Down syndrome in Virginia, was placed under guardianship. She contested it, and, after a year-long litigation, helped to pave the way for others to contest theirs. After the case was resolved and her guardianship terminated, Hatch began to use something called Supported Decision Making.
Hatch didn't need decisions made for her, she needed support to make her own choices. It felt unique, daring even, despite the fact that most people already use some form of Supported Decision Making.
At its core, SDM is the process most people engage with when making choices. There's a big purchase you want to make. Perhaps you're considering a move, a new job, a new relationship. You do research, discuss with trusted friends and family, and then you decide. When filing your taxes, for example, an accountant may explain a complex form in terms you understand.
This may not sound revolutionary but to those like Hatch, who have been forced to jump through a number of hoops just to experience the basic dignities others are immediately afforded, it was nothing short of a sea change.
Supported Decision Making, at its core, supports independence through a network of support, and working within that network of supporters to make informed choices.
For parents like Betsy MacMichael, this was the clear move as her daughter, Jane Desmond, transitioned into adulthood.
"I think that, you know, for us, it's almost like a philosophical approach that says Jane is a smart young woman. She has the right to make mistakes and learn from mistakes like everybody else does," said MacMichael, Executive Director of First In Families of North Carolina, a grassroots organization that helps individuals with disabilities and families access and receive support. She joined the disability field after her daughter's diagnosis of KAND, a rare, non-inherited genetic mutation.
As she parented one child with a disability and one child without, MacMichael says she didn't make a differentiation.
"Once they turn 18 or 21, depending on what you're talking about, you do have to let go," MacMichael said. "I think it's a journey from age zero on. You know, the balancing act of trying to raise a competent person and still protect them."
Rather than removing risk -- and therefore choice -- from Desmond's life, MacMichael is working with the knowledge that she is investing in her daughter's ability to manage her own life. MacMichael won't be around forever, she acknowledges, and with the support and skills her child is now building, she will be better prepared for that reality and can fully experience the joy of creating a life she wants.
"I'm a people person and like to spend time with people who I want to spend time with," Desmond said. "I want to eat what I want to eat. That's it! If I need help, I'll ask."
But not every family moves towards Supported Decision Making. This is a layered and nuanced issue, steeped in long embedded ideas about the ability of individuals with disabilities to direct their own lives — and sometimes, the realities of parenting an individual with different needs.
Advocates call it the school-to-guardianship pipeline, noting that most school personnel are not always aware of guardianship options. Under the Individuals with Disabilities Act (IDEA), decision making responsibilities are shifted to students on their 18th birthday and, suddenly, parents are encouraged to look at guardianship. Rather than discussing the strengths of a particular student and what long-term effects guardianship can have, parents are shuffled towards court.
The realities of navigating disability services on any level — whether it is deciding on housing or seeking support for personal care, amongst other things — is an exhausting process. Guardianship removes a layer of that complexity. But it also can remove the individual's voice.
This week, as #FreeBritney trends again, we all have gleaned that despite immense financial privilege, restoring your rights after guardianship takes them away is not at all simple. For the termination of a guardianship to occur, state statues and courts often request expert evidence that the individual is not "incapacitated."
Often, this takes the form of extensive assessments by medical or psychological professionals. They focus on diagnoses or IQ scores, rather than what the individual can achieve with or without the support of others. When Britney called for the judge to end her conservatorship without testing, this is precisely what she meant. If she can make her own informed choices, with or without the support of others, she can direct her life — no particular diagnosis can change that.
Currently, 40 states, as well as the District of Columbia, have introduced legislation or resolutions that refer to SDM. Nineteen states and the District of Columbia have passed them. Only 12 of those, including the District of Columbia, have passed laws that require SDM agreements to be considered before placing a person into guardianship.
Choices in the Cowell household have always more or less followed the Supported Decision Making model, but when James and his mother, Marie, learned more about the theory, formalizing their process into an agreement became important.
"I don't ever want to take his voice away," Marie said.
As James navigates his life choices, he leans on the support of his team — but knows ultimately, the choices are his. "I'm used to challenges," James said, like working and competing in sports, and he applies the same perspective to big decisions.
As Britney Spears' court battle continues, one thing is clear: the disability community is tuning in, and hoping everyone else will stay engaged as well, if only as a reminder that Britney isn't the only person who has to fight to be heard.
"I know there are famous stars that have to come out, but it's people that live in the disability community that have to experience this every day," said Jordan Anderson, Co-Lead and Youth Ambassador for Wisconsin Supported Decision-Making Team. Anderson, an individual with cerebral palsy who uses a power wheelchair, knows all too well the realities of guardianship. After advocating to retain his rights, rather than being pushed through the school-to-guardianship pipeline, Anderson advocates for others to use SDM too.
"I just really hope that people are more aware of guardianship and do more research and are not put in the same situation."