Many of us who live with disabilities spend a lot of time looking over our shoulders. We may be living independently or with services and supports. We may work, volunteer and have a circle of friends.
But we know that things can change quickly, especially for those of us who rely on staff to help with our personal care and daily living needs. The ongoing staffing crisis is a constant reminder of that. Looking at the blank lines on one’s schedule is cause for anxiety.
An illness. A home accident and injury. The loss of most of a care provider team. Any or a combination of these can upend a person’s life. The loss of one’s home and a forced move into a care facility is an experience too many of us have faced.
So, too, is the prospect of being placed under guardianship and having that guardianship mismanaged.
Minnesota has long had a system in place for appointing guardians for people deemed unable to take care of themselves. While this system has undoubtedly aided many, it has been criticized as an insensitive and at times overbearing approach for people with disabilities.
Guardians are appointed by judges, and are supposed to protect the best interests of those they serve. Guardians can have very broad authority over their charges’ lives, making choices about medical care, housing and even personal relationships.
Placing a person under guardianship may be well-intentioned. But judges may lack information about a person’s life situation. Judges all too often may assume that people with disabilities lack the wherewithal to make major life decisions. Judges may not consider someone’s personal history or unique circumstances.
Questions about guardianship promoted Minnesota lawmakers to make changes to state law in 2020. The intent was to limit use, directing courts to only appoint guardians if less onerous options had been tried and failed. The changes also promoted the “supported decision making” process, which is meant to help guide key life decisions. But if these measures aren’t enforced adequately, then what?
More and more people are being placed under guardianship. State statistics show that as of last year, 33,645 Minnesotans were being supervised by court-appointed guardians. That number is up by about 50 percent since 2019. Has the 2020 legislation had the opposite effect? Or is this a reflection of an aging population?
Cindy Hagen’s case put a bright spotlight on the issues of guardianship. Hagen, 49, is quadriplegic as a result of a childhood motor vehicle accident. Many of us have followed the southern Minnesota woman’s long fight to reclaim some measure of independence, end a long hospital stay and live in the community again.
Hagen has lived with help from caregivers for a long time. She was hospitalized but unable to go home even though she was healthy enough to do so. The shortage of caregivers left her life in limbo.
At one point, Hagen told a reporter, “There is absolutely nothing wrong with my mind. I don’t need a guardian. I just want to go home.”
But like so many of us, Hagen got caught in the dire caregiver shortage. With no say, a Blue Earth County judge put Hagen under the guardianship of a firm she’d never heard. Hagen had to hire an attorney to contest the guardianship order.
Hagen didn’t want to live in a skilled nursing home – she wanted her own home. She just wanted what she’d had for a long time. Blue Earth County officials interpreted that as Hagen having “impaired decision-making” and “lacking sufficient understanding of the reality of her situation.”
Minnesota may be relying on guardianship too much and not doing enough to address our care crisis. This isn’t what the 2020 state law changes, the state Olmstead Plan for community integration, and many other measures are meant for.
This is what really angers and worries us. Of course it’s easier to appoint a guardian. There are great guardians who are fierce watchdogs for their clients. There are others who steal and don’t look out for any interests but their own.
What is happening to our legal rights to live in our home communities? What happened to having a say in life decisions? The message the Hagen case sends is this: If we’re not good little disabled people who sit in a corner and don’t get to have a say, does that mean that our ability to make decisions is impaired? If we disagree, do we lack understanding of our situation?
The ripples of the care crisis are catching too many of us in their wake. State lawmakers need to fix this.