Quick-list your top 10 favorite aspects of being an adult (or, if you're not yet an adult, the top 10 things you look forward to about being an adult)!
Done yet?
Were I a betting person, I'd be willing to bet that the concept of autonomy-being able to make your own choices, to "do what you want" (to an extent, of course), to "not be told what to do," to determine the goings-on of your daily life-features somewhere on that list. Being able to make your own choices about where you live, who you live with, who you hang out with, what you eat, what you wear, and what medical treatments you pursue or don't pursue is a crucial element of one's self-esteem and emotional well-being; those who have this autonomy in all areas are often grateful for it, and those who lack this autonomy in some areas often long for it.
And to suddenly be deprived of every bit of this autonomy is, as one could easily imagine, very psychologically jarring, if not outright damaging.
Yet, this happens with an alarming frequency, even in "this day and age" and in the "free" country that is the United States.
It happened to Sharisa Kochmeister. A journalist and prolific disability advocate who has held executive positions in several organizations and who has a dual degree with honors, this 36-year-old woman would easily be considered one able to make her own decisions. And for most of her life, she has, though, because of her cerebral palsy, epilepsy, and autism, she finds it easiest to do so when using an assistive communication device with the help of her father and sister (Sharisa does the typing herself, mind you, but her father and sister help easy her anxiety, which allows her to translate her thoughts into words). But one misunderstood interaction in a hospital when her father attempted to dislodge some food from Sharisa's throat and Sharisa kicked him reflexively, which was construed as her father being abusive by hospital staff, and Sharisa is removed from her assistive technology and the family members that help her to use it, placed in a nursing home for adults with dementia (with staff that, once later reunited with her device and her father, she admitted that she does not particularly like or trust), and is not allowed to make her own decisions about where to live (she desires to live independently).
It happened to Hannah G. 20 years old, a self-professed dog and frappe lover, and engaged, Hannah is your everyday millennial adult who just so happens to have autism. She also happens to have Idiopathic Intracranial Hypertension, which is a fancy way of saying that pressure builds up in her skull causing debilitating, painful headaches. Over the spring and summer of 2015, Hannah, with the guidance of her mother and her primary care physician, had several surgeries and re-adjustments of a shunt in order to relieve some of the pain. In late August, however, Hannah was admitted to Munson Hospital emergency room, where the staff there became concerned about Hannah's numerous surgeries and, without contacting her primary care physician who could offer a clearer explanation, motioned to have Hannah removed from her mother's care and placed under the guardianship of a pro tempore guardian, who kept Hannah in the hospital against her will long past the point of her being medically cleared to be discharged in which she was not allowed to open her mail, have any visitors (besides her mother), have access to her therapist, sensory equipment (which help to ease her anxiety), or therapy dog, and had not been allowed to leave, despite mentioning herself the desire to return to her family and friends.
It happened to adults whose disabilities aren't always of the congenital, developmental variety (though it would still be every bit as outrageous and a deprivation of human rights if it did only involve such adults). Bret Bohn was a fairly typical 26-year-old who loved the outdoors. He underwent surgery to treat his nasal polyps and, afterwards was given the steroid, prednisone to help regain his sense of smell. He began to develop insomnia soon after this, however, and, after long stretches of sleeplessness, was prescribed medication to reduce anxiety and to ease the insomnia. Around this time, Bret began to develop seizures; not long after, he began to suffer hallucinations. Bret was then admitted to the hospital, where he was given multiple medications. His condition deteriorated to the point where he had, per a prior agreement, resigned his power of attorney/ability to make medical decisions to his parents. Much as with Hannah's case, however, there was some disagreement between his parents and a few of the health professionals, especially regarding the eventual diagnosis of autoimmune encephalitis, and, thus, abuse was alleged, and the power of attorney was shifted to Adult Protective Services, who committed Bret to a psych ward and kept him there against his wishes. On top of this, visitation by family members and loved ones was drastically reduced and then eliminated altogether, and Bret was denied access to cellphones and computers.
Now, all of this isn't to say that disabled adults are never abused or neglected by their familial caretakers. It does happen, and taking steps to stop it from happening when it does improves the quality of life of many people. Adult Protective Services does have its role to play. However, it seems that, at least in the cases above, the professionals overstep, often against the wishes of the person in question.
Even if said professionals are not overstepping and even in cases where the existing parents and caretakers may not have the individual's best interests in mind, it seems that the current matter of handling these cases leads to more psychological trauma and deprivation of basic rights than necessary. In all of these cases, access to visitation and to the outside world is greatly restricted. In all of these cases, the individuals feel as though their self-determination is stripped from them and that their own wishes are ignored. In all of these cases, the individuals are unhappier under the "guardianship" of the hospitals than in their homes with their loved ones.
This current model simply isn't working. Many of these hospital staff and protective social workers undoubtedly have a genuine intention of doing the best possible for the adults in their care, but it's clear that there needs to be better research and clarification into what this "best" entails. Studies suggest that treatment plans that allow the individual to be at home, to be surrounded by people they know and trust, and, of course, to be able to determine as many of their own decisions as possible promote the utmost mental and physical health. Abusive individuals should be removed from the situation, of course, but then it seems that there's a great need for a tighter criteria on what qualifies and doesn't qualify as "abusive." Distrust of the caretakers of disabled adults (though sometimes founded) and of the cognitive and rational abilities of those with disabilities (less often founded) is rampant, and regulations need to be enacted to ensure that this distrust doesn't lead to disastrous outcomes. Self determination should be encouraged, recognized, and honored as much as possible in all legal and medical situations (and, ideally, in all other aspects of one's daily life, too). While medical and legal professionals can be helpful, the main and final decisions ultimately need to lie with the disabled adults themselves.
Fortunately, Hannah's story has taken a happier turn: thanks to her unrelenting sister and mother, a powerful lawyer, hundreds of supporters, and, perhaps most of all, her own self-advocacy, Hannah has been released and is now enjoying life with her mother, her sister, and her beloved finance. Bret is also back with his family and back to the great outdoors; his mental and neurological health has improved greatly.
Some disabled adults, however, like Sharisa (as of the writing of this article), are still waiting for their autonomy. Hannah is still fighting for her rights to have her support staff back that will allow her to live independently in her own home. Though victories have been made, the battle isn't over.
This is to say nothing of all of the adults whose cases do not make it to a widely-shared article on a Facebook feed or on a Medical Kidnapping watch-list. For every Sharisa and Hannah and Bret that makes their way into the public awareness, there are likely many other adults with similar disabilities in similar situations, adults who are having their rights to make their own medical decisions stripped from them and forced into living situations that do not benefit their psychological and social needs.
For these individuals, a radical revision of how we handle the determination of medical treatment for disabled adults can't come soon enough.
