Opinion

It Shouldn’t Be This Hard to Get Mentally Ill People the Help They Need

A few weeks before Mayor Eric Adams announced that New York would begin a big push to involuntarily hospitalize severely mentally ill homeless people even if they posed no risk of harm to others, my sister was involuntarily admitted to a psychiatric unit in a city hospital. My sister is not homeless; she had been living in a studio apartment in Queens. But she has a serious mental illness and in November a neighbor called 911 after seeing her on the street carrying a chef’s knife.

I don’t know why my sister was carrying a knife. But in the city’s approach to identifying and caring for the mentally ill, the knife was key. Because she had a knife, the police determined that she posed a danger to others. E.M.S. workers then took her to the nearest hospital with a Comprehensive Psychiatric Emergency Program, and she was involuntarily admitted to the behavioral unit three days later.

My sister is fortunate. She passed the threshold in New York for involuntary hospitalization without anyone being harmed. The mayor’s new directive is an attempt to make it easier for other mentally ill people to be treated, even when they refuse care. I don’t know if the directive will succeed. The city has a shortage of psychiatric emergency rooms, an inadequate number of inpatient beds in hospital psych units and interminable waiting lists for outpatient treatment programs and affordable housing. Already the first legal challenge to the directive has been filed in federal court. I know only that after 18 years of trying to keep my sister safe and housed in New York, it should not be this difficult to get the mentally ill the help they need.

Families like mine are a key constituency that has been largely sidelined during the national crisis about caring for the mentally ill. That may be starting to change. In New York, the new directive is a much-needed step. In California, where I live, the Legislature recently passed the Community Assistance, Recovery and Empowerment Act, known as CARE, a law that allows families, domestic partners, even roommates to petition courts for county intervention, including outpatient care for seriously mentally ill people. The new law, and the gradual rollout, which staggers deadlines by county, is seen as a potential model for state mental health care.

Before she was diagnosed with bipolar disorder in 2004, my sister was an art director at a leading advertising agency in New York. She owned a co-op in Manhattan, vacationed in the Hamptons and was a die-hard Mets fan. Since her diagnosis, she has cycled in and out of New York hospitals even as her mental health deteriorated. She has been involuntarily hospitalized two other times, seen by a mobile crisis unit, treated and discharged by the same hospital where she was taken for inpatient care in November, and been noncompliant on all outpatient treatment.

In 2009, her condition had worsened and she was given a diagnosis of schizoaffective disorder. She lost the apartment she had owned for 20 years when, unbeknownst to our family, she fell behind on the mortgage and monthly maintenance fees. The co-op board approved the sale of her shares to a real estate speculator, who then evicted her.

To keep my sister from becoming one of the thousands of mentally ill homeless people in New York, I and other members of our family spent three years, 2009 to 2012, navigating the city’s real estate laws, federal disability requirements and the state’s health care system and mental health laws. It was a daunting, time-consuming and almost impossible task for laypeople, especially for those who live, as we do, outside of New York.

Our family is not wealthy, but to secure the financial and other benefits to which my sister was legally entitled, we needed the help of a New York real estate attorney, a New York guardianship attorney, a disability attorney, an accountant, a health insurance agent and, most recently, an independent psychiatric case management consultant. All of them have been necessary to keeping my sister safe and housed.

Now as her legal guardian, responsible for her financial and personal needs, including her medical care, I am navigating the section of New York’s Mental Hygiene Law known as Kendra’s Law to get my sister the outpatient medical care she needs and which she refuses. Enacted in 1999, the law lets courts mandate assisted outpatient treatment for those, like my sister, whose mental illness makes them a danger to themselves or others but who are unwilling or unable to comply with outpatient treatment.

Because of her illness, my sister lacks all insight into her condition. She does not understand that the loss of her career, her co-op, her life in New York as she once knew it is due to her illness. She does not accept that I am her guardian, that she can no longer live unsupervised and that the stray animals and injured birds she adopts have caused thousands of dollars in damage to the apartments I was able to sublet for her. She does not understand that she has become a danger to herself and others and needs medical treatment to safely live within the community.

Credit…Andrea Modica

As much I understand all that, and as obvious as her condition is, I am forced to convince the hospital’s doctors treating my sister that she needs mandated outpatient treatment, including medication. While Kendra’s Law allows for a parent, spouse, adult child, adult sibling or adult roommate to petition for assisted outpatient treatment, in practice, petitioners are taken more seriously if they are professionals like hospital directors, psychiatrists or parole officers. When my phone calls to the hospital are not returned and I am given only cursory and conflicting information from the psychiatrist and social worker assigned to my sister’s “team,” I fly to New York from my home in Los Angeles to meet them in person to try to prevent my sister from being discharged without adequate plans for her safety and future care.

The hospital’s behavioral unit is behind a series of locked doors. I meet with the psychiatrist and social worker in the day room sparely furnished with tables and chairs and a single jigsaw puzzle. The doctor tells me my sister is not responding to the oral anti-psychotic medication and that her dosage will be increased. I tell her that my sister has history of noncompliance on medication even while hospitalized and has refused all voluntary outpatient treatment.

The doctor tells me she is “open” to considering a petition for court-mandated treatment under Kendra’s Law. My relief is short-lived: The social worker tells me my sister does not meet the law’s criteria, that she needs two inpatient admissions within 36 months and has only one. I tell her that because my sister armed herself with a knife and the police determined that she posed a danger to others that she does qualify for mandated treatment under the law. She is unmoved and informs me that my sister will be discharged once she is stabilized.

Discharged where? Where can I house my sister, when she has been evicted or asked to leave every place she has lived since she became ill? Where can I house her when she has no photo ID and refuses to cooperate on obtaining a new one, without which I cannot check her into a hotel or even the Y.M.C.A.? Where can I house her when there are yearslong waiting lists for subsidized supportive housing? The social worker tells me that housing my sister is my responsibility — if I am unable to provide it, the hospital will send her to a homeless shelter.

I ask to meet with my sister. The hospital confiscated her phone and the last text I had from her was chilling: “I had to use a knife to get out of there.” I am told I can bring her some clothes — nothing with drawstrings with which she might hang herself — and I am allowed to see her through a window before I leave.

My sister and I shared a bedroom as children, but it takes me a minute to recognize the thin, disheveled gray-haired woman I see through the window. Then I see her wary, puzzled expression, and I realize that she no longer recognizes me. She is less than 10 feet away and I cannot reach across the decades and find the little sister I knew, the beautiful, hilarious and talented person she once was. The nurse standing beside her hurries out from the ward; he tells me that my crying is “not helping,” that I am confusing and alarming my sister. I move away from the window so she can’t see me anymore.

This is the reality of caring for a mentally ill family member in America. I am the last barrier between my sister and homelessness. And I need some help. If my sister had cancer, or Parkinson’s or diabetes, she could get treatment. But because she is mentally ill, she is trapped in a reality distortion field from which she cannot escape without the medication she perversely refuses.

From her texts to me, I know she wants her life back, wants the return of her co-op, the chance to again work as an artist. And I know from her previous hospitalizations that her mental health improves with medication, and that there are now long-acting antipsychotics available as injections, which removes the need for daily compliance.

My sister has a generous federal disability benefit, Medicare and supplemental insurance, and a family who cares about her. As her guardian, I pay her expenses from her monthly benefit and transfer money daily to the debit card she carries as her only ID. But how can I keep my sister safe and housed if I cannot get access to the very care she needs?

How do I get beyond what Kendra’s Law is designed to accomplish and how it is interpreted by those allowed to carry it out? Will the mayor’s new directive increase my chances of getting her court-mandated outpatient treatment? It is no longer a mystery to me why the streets of New York and Los Angeles and too many other cities in America are home to thousands of unhoused mentally ill people. They have nowhere else go.

I leave the hospital in despair. I spend the rest of my time in New York clearing out the apartment in the private home where my sister had lived. I wear a KF94 mask and latex gloves to sort through her clothes, the trash. I arrange care for the stray cat that she tried to keep as a pet and attempted to feed with cans of tuna but which instead fed the mice infesting the room. I contact an exterminator, a remediation company, a plumber and a painter to clean, decontaminate and repair the apartment.

And I am overcome with gratitude for the owner of the house who has tolerated my sister and her illness with otherworldly compassion. She has made not only my sister’s life bearable, but my own. As grateful as I am to her, she is not a substitute for adequate state-supported care. Housing the mentally ill will not be solved by the kindness of strangers, not when there are millions of people like my sister.

Before I leave New York, I visit the botanical garden where my sister had spent every day until she was most recently hospitalized. One thing that her illness has not taken from her is her love of New York. She went to the garden every morning and every evening took the subway into Manhattan to eat at the same deli on 34th Street near her former home in the co-op. “I live in the city!” she texted me, again and again like a mantra. It is how she remembers who she is.

I want to help her remember. When I was appointed her guardian, I bought her drawing pads and pens, and soft pastel chalks, so she could resume her artwork for the first time in decades. At the botanical garden she sketched and photographed the flowering plants, calmed by the work, at being in nature, at being in New York. The photographs she took with her phone’s camera were arresting in their composition, the luminous shades of green, the dappled shafts of sunlight. They radiate an unexpected serenity. “It does not look like this in real life,” she texted me. “It’s what I see.”

It is in her photographs that I too can see my sister as she once was and might be again if, against all odds I can get her the care she needs. Her photographs give me hope. As she texted me from the garden, from the depths of her illness, “I see beauty everywhere.”

Hilary de Vries is a writer and screenwriter whose work focuses on the impact on individuals and families by larger political and cultural forces.

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