By Jill Escher
In early 2017 I entered a courtroom in downtown San Jose, California to appear before a probate judge in the case of Jonathan Escher, my son, who was about to turn 18 and therefore on the verge of becoming an emancipated adult, empowered to make his own legal and medical decisions. My husband and I were petitioning for a “limited conservatorship of the person” for Jonny.
Why? Jonny, nonverbal with a measurable IQ in the 30s, and with functional skills of a preschooler, may have been a manly man in body and years, but his mental incapacity meant he had a desperate need for protection by others who were legally bound to act in his best interests. In our case, those others were us. In other words, California’s conservatorship laws afforded Jonathan the ability to have needed legal protections even after he aged into adulthood.
For the most part, this system is practical and sensible: it would be the height of cruelty to abandon our severely mentally disabled adults at age 18 with a “Goodbye and good luck! Sorry you can’t protect yourself while your loved ones can’t act on your behalf!” But recently the conservatorship system has come under intense scrutiny due to the case of Britney Spears, who many years ago was put under both a conservatorship of the person (medical, legal decisions) and her estate (management of her finances), after, it seems, she suffered mental illness of some sort while at the same time a beehive of characters vied for control over her life, career and fortune. The story was reported in depth in The New Yorker here.
Like most everyone, I look at the Spears case with astonishment. Here is a massively successful and intelligent woman, who, while seemingly troubled, had many of her basic rights stripped away, with very little input from herself, and with very little opportunity to shift the terms of the conversatorship or undo it as circumstances changed. Surely, in her case, there must be a better way.
Disability activists, though have used the case as a bellwether to denounce the entire system of conservatorship (called guardianship in almost all other states), as abusive to people with disabilities, depriving them of their civil rights, enfeebling and infantilizing them. It has energized the quest of some groups, like ASAN, that want to “end all guardianships.”
Is the conservatorship system perfect? Absolutely not (but hey all our judicial systems have flaws; it doesn’t mean we should thoroughly dump them). But in many cases does it fill a pressing societal need? Absolutely, without any question, yes. Why the disability rights militants want to throw the baby out with the bathwater is mystifying — and potentially very dangerous for our loved ones.
In the case of adults with severe autism like my Jonny, families petition for conservatorships not because they want to oppress or control their extremely vulnerable loved ones, but because they want to protect them. In nearly all cases, the conservatee is indigent, and there is no potential financial gain to the family. To the contrary, the conservatorship imposes on the conservators many affirmative duties, responsibilities, and burdens, with no potential tangible gain apart from the knowledge that they can use their legal authority to advance the well-being of their loved one. The system requires them to act in their conservatee’s best interests — this is a court mandate, and not an abstract, waffle-y, informal moral duty.
Some people ask, why not use a power of attorney (essentially, a private contract empowering another party to manage some aspect of your affairs) instead a conservatorship? Indeed, a power of attorney is a clear and preferred alternative in many cases. But there’s a hitch: to create a valid POA one must possess the mental capacity to make this delegation of power in the first place. In the case of severe autism, few individuals would possess that cognitive capacity. While I know of families that have “faked it” with as POA “signed” by their severely autistic loved ones, this strikes me as potentially more abusive than a conservatorship as this process lacks the oversight and protections provided in a conservatorship proceeding.
A snippet of the probate court investigator’s interview with Jonny.
In a conservatorship, it’s not like you waltz into a courtroom one minute and emerge with the articles of conservatorship a few minutes later. In the case of our son, the process took many months and a massive amount of effort on the part of many people, and included the following steps to protect Jonny’s interests: notice to all family members; capacity declaration by physician; report by the regional center (state-authorized agency which provides services to those with I/DD); report by Court investigator; report by public defender appointed to represent Jonny; screening of proposed conservators; verification that conservators had read the state conservatorship handbook and watched the video on same; and a judicial hearing before a probate judge. The process was strongly tilted in favor of protecting the proposed conservatee from abuse or oppression, as it should be.
But as I said, the system has its flaws. First, some families of severely autistic adults are scared away from conservatorship due to the potential liabilities — we need to make sure conservators are never liable for the severe autism behaviors of their loved ones. Second, certain aspects of the process did seem tattered — for example, the instructional video was outdated and often irrelevant to cases of severe mental disability, and while the public defender was keen to represent Jonny’s interests, he seemed busy and harried (Jonny’s disability is so extreme this hardly mattered in our case — in other cases requiring more robust representation this could be a problem). Third, in Jonny’s case the Court stripped him of the right to vote. As I have written previously in “Mentally Incompetent to Vote” — How Adults with Severe Autism Are Systematically Disenfranchised,” we must do better than deny our most severely disabled citizens the ballot and call it a day. We also need to ensure that professional conservators and government-appointed conservators properly exercise their authority — an issue that will loom larger as the autism parent generation passes away.
Can the conservatorship system be improved? Sure it can. But need it be eviscerated? Of course not. Unlike the Britney Spears case, for the severely autistic conservatorship provides a fundamental, necessary protection to promote physical, medical, social, and legal well-being.
Jill Escher is President of the National Council on Severe Autism.
Please see the NCSA Position Statement on Guardianship here.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.