‘I Want to Live Like a Human Being’: Where N.Y. Fails Its Mentally Ill

Dec 06, 2018 · 189 comments
Ford313 (Detroit)
I have a 58 year old relative with Aspergers, OCD, Major Depression and GAD. He lives just a few levels cleaner than Mr. Clemente. His apartment is a cluttered pit of papers, catalogs, mail he doesn't open, garbage in bags he doesn't take out. It borders on Hoarder because of the panic of throwning things out. Barely washes or launders his clothes. He gets SSDI and lives off of instant ramen, cola drinks, coffee and instant mashed potatos. Like Mr. Clemente, he wants no one telling what to do, BUT complains about his lot in life. There is a huge disconnect between nice place and nice things need daily up keep. He refuses all help, and his psychiatric team is *meh* about is living conditions. The fact his diabetes is uncontrolled doesn't matter either. If he lives another 5 years I'll be shocked. The bar is so low for competency isn't a joke. My cousin knows person, place and time. He knows the different between an apple and an orange. That's it. You are good to go and FUBAR your life beyond recognition. My family has pleaded to get my cousin help. His psychiatric team has told my cousin's mother, a person is has the right to trash their lives right in front of you. It shouldn't be this way.
Kimberly King (Poulsbo WA)
The uncomfortable fact is that the severely mentally ill are without support, thanks to statutes that reduce intervention in the name of civil rights - to whether they are "a danger to themselves or others". It's obvious that because of their illness, they are always an immediate danger to themselves, and sometimes, to others. My sister who has severe schizophrenia , after being on the street, after being sent to a mental hospital and then released once her 15 day incarceration period ended - she was lucky enough to be sentenced to a program that ensures she takes her meds, and was placed in section 8 housing with city court supervision. I know there is a fine line between a patients civil rights and medical intervention - and the safety of the community - but the issue of severe mental illness needs to be thoroughly examined and revisited with intervention and treatment in mind.
Wonder (Seattle)
It’s often said that mentally ill people are not a danger to others but over the past number of years there have been horrible incidents in Seattle of mentally unstable people off their meds committing horrible crimes. A woman standing at a downtown crosswalk who had her hair set on fire, a Mariners fan walking with his family stabbed to death, a young woman killled in broad daylight by a schizophrenic man, a man leaving a grocery attcked and killed with an ax, a woman raped because the man said God wanted him to heal her with sex.....just a smattering of some of the local news. Mental Illness that includes hallucinations and voices is very serious and society pays a price by ignoring it or thinking that the people suffering from it are always capable of self-management. Sometimes public safety trumps people’s independent living.
JW (Arkansas)
"The Mentally Ill" is a category that is so broad that it really is meaningless. Unlike diabetes or cancer, there is no universally accepted standard for diagnosis for a mental illness. This is especially problematic when those diagnosticians invalidate the experiences of people by applying psychiatric labels. Indeed invalidation seems to be the end goal. Also, drug addiction is a factor in many of the behavioral issues experienced by mentally ill individuals and yet mentally ill people are not always treated adequately for drug problems. It can be hard to know whether a person is exhibiting erratic behavior because of mental illness, drugs or some combination of the two. Drug influenced behavior is as important to determine in a mentally ill person as it is in any other individual and yet it is often easy to overlook if no normative behavior has been clearly established. Understanding the relationship between drug use and mental illness is critical to unlocking solutions to all of these problems. But to do so people will have to start listening to the people marginalized by these problems. Perhaps the first step is getting rid of the term "mental illness" because of its implied correlate with well-defined physical illnesses. It is a false parallel and also, perhaps, dangerously misleading.
oyad (New York)
Most of these people need continuous support, whether they are in group homes, on the streets or independently living. Social workers are paid so little, with unbelievably high number of cases and clients to follow up with. Most will never have enough time and resources to cater or assist their clients adequately or follow up on their psychiatrist appointments. Many agencies servicing these individuals on Medicaid, just want to get paid without allocating enough resources into their workers.
John Brown (Idaho)
What is wrong with group homes that respect the rights of those living there but also has rules and ways of helping those who cannot fully help themselves ?
Kimberly King (Poulsbo WA)
@John Brown Group homes are great, but they don't service the severely mentally ill, who will often refuse to take their meds. The uncomfortable question is: when can family and/or the state intervene and make sure medications are taken? That proper care is given? This goes to the heart of the question of individual liberty vs. the patient's own treatment, and the welfare of the community.
GCE (Denver)
Almost as heartbreaking as this article were the comments. Everyone should be grateful they haven’t lived with a family member who suffered from severe mental illness and/or substance abuse disorder. My mother passed away in June after living in an adult home for several years. She was a long-time alcoholic with alcoholic encephalopathy, which caused delusions, complete aphasia, and other deficits which made it initially impossible for her to live on her own. Because she was on Medicaid and obviously unable to work, we had slim pickings to find housing for her. We were lucky enough to find a caregiver who genuinely seemed to care about her well being after going through several horrible situations with poorly equipped adult homes. My mom was also stubborn and reluctant to give up independence. She wanted to move into her own apartment as soon as possible - really, demanded it. She was miserable in the group home environment. She also was probably not ready to move into her own space and take responsibility for her own care, but she insisted. She passed away within 3 weeks of moving. I, of course, wonder if it could have played out differently, but I know it was important to her to live on her own. In the end, I’m grateful she accomplished that. People with mental illness and disabilities are still people, and quality of life still matters. It’s more complicated than some of the “institutionalize” chants going on in the comment section here.
Matt (California)
Good intentions paving company.
Rev. E. M. Camarena, PhD (Hell's Kitchen)
Mental illness hits many people, not just indigent Black men. The mentally ill include those people who feel so empty inside that they act out a never-ending need to amass vast amounts of money. They own things like gold, jewel encrusted toilet bowls at $300,000 a pop. Just examining the number of these over-achieving money-hoarders who commit suicide each year should tell us something. Yet people like that are admired in our culture; even envied. They live "The Good Life" as reported in so many glossy magazines. When more people can look at the super-rich money-hoarders and see them for what they are, we will start to make progress. Mental illness in America is rampant and not just among people that illness has impoverished. Aside from the super-rich, look at the vast number of American people (including children!) on antidepressants and anti-anxiety drugs. I wonder how many people reading this felt a twinge of envy or the tug of desire when they got to the part about the $300,000 toilet bowl... https://emcphd.wordpress.com
xyz (nyc)
while this report is very important, ethical considerations should have been made .. it is NOT ok to post pictures of people who most likely cannot legally consent to being photographed and more importantly featured in the newspaper.
RLiss (Fleming Island, Florida)
One of the chief problems in encouraging the severely mentally ill to live "on their own" is that few will continue taking their anti-psychotic meds indefinitely. These meds DO have severe side effects that make them more than a bit unpleasant to stay on. See: https://www.salon.com/2013/09/29/ronald_reagans_shameful_legacy_violence_the_homeless_mental_illness/ which explains how and why what is going on now happened and what was SUPPOSED to happen to these deinstitutionalized people.
Julia Ryan (Ireland)
A man has schizophrenia, he is not 'schizophrenic'. You wouldn't refer to a cancer patient as cancerous, would you?
Meta Self (Santa Cruz, California)
@Julia Ryan, As bipolar persons we take your point and often make the exact same analogy that persons do not refer to cancer patients as "cancerous" when we encourage the use of person-centric, strength-based language to describe peers with mental health conditions. (Note that the weakness-based term "illness" does not appear in the phrase "mental health conditions.") However, there is no consensus, even among peers, as to what language is correct. Persons with diabetes are commonly referred to as diabetic persons or simply as diabetics, and this is not considered stigmatizing. One way of reducing stigma is to use person-centered, strength-based language as above. Another way is to reclaim stigmatizing language, as in the term "queer." When persons started calling themselves "queer" in the 80s, mainstream "gay" identified persons strongly objected, arguing that it reinforced discrimination, while "queers" argued that they did not want to be part of the gay mainstream and were going to use the term as they saw fit. Now, 3 decades later, the term "queer" continues to connote non-mainstream culture, but is much less controversial in the LGBTQ+ community. Similarly, we have no objection to being referred to simply as "bipolar," so long as the usage is contextualized in an affirming manner and not derisive. Likewise, we reserve the right, in our most florid manic moments, to accurately refer to ourselves as totally insane, non-compliant, genious freakazoids!
Rev. E. M. Camarena, PhD (Hell's Kitchen)
Mental illness hits many people, not just indigent Black men. The mentally ill include those people who feel so empty inside that they act out a never-ending need to amass vast amounts of money. They own things like gold, jewel encrusted toilet bowls at $300,000 a pop. Just examining the number of these over-achieving money-hoarders who commit suicide each year should tell us something. Yet people like that are admired in our culture; even envied. They live "The Good Life" as reported in so many glossy magazines. When more people can look at the super-rich money-hoarders and see them for what they are, we will start to make progress. Mental illness in America is rampant and not just among people that illness has impoverished. Aside from the super-rich, look at the vast number of American people (including children!) on antidepressants and anti-anxiety drugs. I wonder how many people reading this felt a twinge of envy or the tug of desire when they got to the part about the $300,000 toilet bowl... https://emcphd.wordpress.com
glorybe (New York)
Mr. Clemente has a right to medical privacy, as do all medical consumers. Showcasing his illness with headlines and photos without his "consent" demonstrates in a NY Times article the violation of the most vulnerable. Shame on you.
Rev. E. M. Camarena, PhD (Hell's Kitchen)
Mental illness takes many forms, not just indigent Black men. The mentally ill include those people who feel so empty inside that they act out a never-ending need to amass vast amounts of money. They own things like gold, jewel encrusted toilet bowls at $300,000 a pop. Just examining the number of these over-achieving money-hoarders who commit suicide each year should tell us something. Yet people like that are admired in our culture; even envied. They live "The Good Life" as reported in so many glossy magazines. When more people can look at the super-rich money-hoarders and see them for what they are, we will make start to progress. Mental illness in America is rampant and not just among people that illness has impoverished. Aside from the super-rich, look at the vast number of American people (including children!) on antidepressants and anti-anxiety drugs. I wonder how many people reading this felt a twinge of envy or the tug of desire when they got to the part about the $300,000 toilet bowl... https://emcphd.wordpress.com
Rose Ananthanayagam (Trenton)
I see this over and over again, and I was involved in it back in the ‘90s. Leaders, advocates and agencies want to “release” people with disabilities from their cages “so they can fly free,” willfully ignoring the fact that many of these individuals must be supported in the air by an army of social support workers. AND they assume that righteousness alone will pay these workers enough to feed their families, pay their rent/mortgages and pay their bills. And they assume that Mr. It’s the Right Thing to Do will give these workers the training and resources they need to do their jobs. AND they assume an army of saintly workers will rise from the ground willing to take and stay in these positions, given all that. And that the support services are there to begin with, but who cares if they’re not, it’s cruel to keep someone in a restrictive setting! Good luck with that. How about we stop trying to grant PWD their rights on the cheap? How about paying these support workers properly? How about making sure these grand plans for support services are based on actual, on-the-ground and fully-equipped programs **before* you release folks from more-restrictive settings? Stop assuming that strident advocacy, righteousness, wishful thinking and unwillingness to listen will allow unprepared individuals to live independently in the community.
NY Coolbreez (Huntington, NY)
This is a tragedy. Plain and simple. A tragedy.
TheraP (Midwest)
We’ve been here before. It never truly helps the severely mentally ill person. Or their family - if they have one. The only reason this is really done - over and over - is to save tax money. It may be rationalized as something that provides freedom. But that is an excuse. We don’t let children just wander around - to their detriment. And we don’t let senile old people do that either. Frailty, vulnerability or mental impairment calls society to a Duty of Care. Compassionate care. We indict parents who fail to care for their children. And we should indict ourselves if we fail to care for the least among us, of whatever age, if they are mentally ill or senile too. Regarding the latter, it could happen to any of us in old age. Inflicting indignity on people is NOT freedom.
doy1 (nyc)
@TheraP, exactly. We see the results of this misguided "freedom" - which is more about spending as little as possible on those who need our most care.
DJ Frost (Paducah, KY)
What the State is doing is called "dumping" and it is done to save money.
KatheM (Washington, DC)
One of my college classmates from the late 70s went on to become a lawyer who "freed" people from mental institutions. They all ended up on the streets without proper medical care or warm and safe housing. My classmate has pursued a new avenue in law, but her legacy remains. Dumping people into these programs is not progressive -- it is outright stupid, and the result of far-left arrogance. (For the record, I'm a liberal.)
Alan Gambrell (Washington DC)
I suppose it would be less headline grabbing to report that 4-5% of severely mentally ill people may have failed to live independently, but it certainly would have been far more accurate.
Amidlife (Bainbridge Island, WA)
Every society has mentally ill people. Are there examples we can look to to find humane, respectful, effective care? Outrage is fine, but is there a solution?
Tony (New York)
This is New York, home of ultra-blue progressives. This is New York, home of gross failure for our most vulnerable citizens. This is New York, where ultra-blue progressives blame someone else for their failures, instead of stepping up to solve the problems.
doy1 (nyc)
@Tony, and what are ultra-red conservatives doing to solve societal problems? Slashing funding to every kind of social safety net for the poor and most vulnerable.
Tom Kochheiser (Cleveland)
This broke my heart.
dr. c.c. (planet earth)
Private agencies, managed care--no wonder these people aren't doing well. And the social workers they have hired don't seem to care much; they are poorly paid. These people need daily intensive psychotherapy, from doctoral level professionals, and well paid social workers who come for an hour twice a week. And its not surprising that they don't take "their medications," These drugs have horrible side effects and the companies that make them have been sued by the government for recommending their use for non-psychotic patients, leaving the poor psychotic patients to tolerate the horrible side effects. These drugs would not and are not (except by many irresponsible physicians) be made or used for any other people, Why are psychotics expected to tolerate them? Why can't PHARMA figure out how to make more tolerable drugs for psychotics? It is because no one cares. If left to decide for themselves, 75% of patients stop taking these drugs after 18 months, because of the horrible side effects.
Charkswim55 (PA)
Another example of experts who have made the situation for the mentally ill worse with their ill-placed compassion.
S.L. (Briarcliff Manor, NY)
The is ridiculous. Many of the mentally ill people in this article were not good judges of their ability to live in their own apartments. One of the problems is that drugs to treat mental illness have a lot of bad side effects which make people stop taking them which I understand. Social workers are frequently not good judges either. Since the program is supposed to get people out of institutions, that is what the social workers are doing even when their clients are not capable. Under the guise of not violating the civil rights of the mentally ill people, we are endangering their lives and the lives of those who live nearby. Let us face reality, there are large numbers of severely mentally ill people who are incapable of living on their own even if they think they are. Social workers should err on the side of protecting people's lives by keeping them institutionalized, even against their wills.
Patricia Wallace, LMSW (New Haven, Ct)
There has been excellent and well-known research by Dr Dennis Culhane and associates that shows that 80% of people that are chronically mentally ill and/or addicted can live successfully in supportive housing. That still leaves 20% of people who are likely to cycle in and out of emergency rooms and homelessness, and whose life expectancy is considerably shorter than average. For the 80%, quality, permanently affordable housing and permanently available services are necessary. Care and competence is indispensable. I sincerely hope the supportive housing model is not discarded in New York as a result of the serious problems made known by these news organizations. I had a family member that died as a result of poor care in an adult care home in another state. I hope New York will be forced to do this work at the level of quality that people with these challenges and needs deserve. The Corporation for Supportive Housing is a respected national organization that has shown the way. There are answers.
Kristin (New York )
I worked for a decade in community housing for adults with mental illness in NYC. Our agency provided both supported and "level II" (more supervised) housing. The state required that people who were thriving in level II housing "graduate" to supported housing. Sometimes this was a positive move and the person continued to thrive, but often it was the support of the level II housing that allowed the person to thrive and remain in the community. There was a time when an individual could remain in a level II facility indefinitely but that changed during my tenure and we saw many, many people "graduate" only to end up in a state hospital. I always considered this a tragedy since we knew the person could live well in the community with proper supports, but all level II facilities were declared "transitional." We need a different levels of housing and supports to meet the needs of people with varying degrees of disability. We also need to fund our social support programs adequately. No one should live in squalor (including the social workers who care for this population).
drmaryb (Cleveland, Ohio)
Every human being needs some type of help or support to live safely and to have their basic needs met. I have the good fortune to be reasonably healthy, able to work and capable of living on my own. Still, if my furnace broke, I wouldn't know how to repair it. Without heat, I could die from hypothermia. I need other people. Having people I can depend on does not take away my freedom - it enhances it. So too for a person afflicted with mental illness - except that he/she may have a different set of needs. A person with a mild or well-managed mental illness may have needs no different from mine. Someone with a moderate level of illness may need additional resources in terms of finances, housing or socialization. Even greater are the needs of those afflicted with very serious and chronic mental illnesses that distort their perception of reality - of their own needs, safety, the rules of society and even of the fact that they have an illness. Unable to exercise sound judgment, they need others to help them with the most important judgments in their lives. This is what enhances their freedom: having someone who cares about them to assist them with tasks of life while respecting their dignity and preferences whenever possible. Policies, settlements and budgets do not care about individual needs and often paint all with the same brush. We need compassionate caregivers for the severely ill and we need to be willing to compensate them for this difficult work.
Cmcguillicuddy (Jackson Heights)
What about the rights of Mr. Clemente’s adjoining neighbors, who had to deal with the smells, the bugs and the constant threat of a fire or flood etc?
Aaron (Orange County, CA)
@Cmcguillicuddy Great point!... If that person lived next door to Hillary Clinton .. That person would be bounced immediately!
doy1 (nyc)
@Aaron, what on earth does this have to do with Hillary Clinton?!? But if you want to go there, I doubt Donald Trump would tolerate having Mr. Clemente as a neighbor for 1 minute - even if Mr. Clemente were totally mentally competent.
Art Ambient (San Diego)
Living alone in an apartment with a serious Mental Illness is very difficult. Isolation aggravates Mental Illnesses like Depression or Schizophrenia. Eventually the person is going to have a breakdown or commit suicide. It is a sad situation. What is needed are outpatient Mental Health Programs where people living alone can socialize and get counseling on a daily basis.
Bill H. (NYC)
@Art Ambient Check out fountainhouse.org, a community based model that combines community system of care with housing.
Herbert Gross (Parsonsfield Maine)
I was a resident at a state hospital that was "deinstitutionalizing" in 1961. 28 years later as Director of a Mental Health and Addictions Department I had several clinics that were really effective. . A practical solution would be to re-open mental health wards run by providers who could safely discharge them to facilities under the same providers control and READMIT and discharge them as conditions indicate. The same providers could also run independent living homes. Giving providers the tools to follow patients at varying stages of health and disease would give their clients/patients a feeling of being cared for in a trusting safe world. The old state Hospitals were safe by and large and yes- there were major problems- but the state hospitals were not all bad. Patients managed the farms, mowed the lawn and had controlled responsibilities. Not nearly enough if them were encouraged to become independent but that was not a high priority. When viewed from the point of view of a libertarian the State hospitals were 100% evil. That just wasn't true. Ideas about mental illness change over time. Crazy people were originally housed in jails. They were next judged to be ill and were housed in hospitals. Next they were judged to be institutionalized and were freed. And currently the largest public mental hospital is the LA County jail. A society can be defined by how it treats its most vulnerable members.
Steven Fries (Rochester, NY)
The overblown great vilification of state psychiatric hospitals is most unfortunate, and the great praises of “deinstitutionalization” is equally unfortunate. While there are some success stories of psychiatric inpatients doing well in a community setting, most often in the setting of a state staffed group home-there are also a significant number of inpatients who are “deinstitutionalized” and then end up homeless and incarcerated, but usually these sad cases are unreported and swept under the rug and rarely mentioned while advocates for continued deinstitutionalization and the ongoing closing of much needed inpatient psychiatric facilities loudly sing the supposed benefits of this destructive policy. Make no mistake-there is a definite, ongoing need for the availability of a significant number of inpatient psychiatric beds, and the wanton closing of so many state psychiatric hospitals over the last 25-30 years has created a corresponding crisis of a lack of needed psychiatric care for many former inpatients whose “community placement” has hardly been beneficial for them. And while there have been major advances in psychiatric medications over the years, there are a number of patients who require ongoing supervision, in an inpatient setting or in the setting of a state staffed group home, to take their medications as prescribed to maximize the benefits of those improved medications.
fdt (Georgia)
My heart goes out to these mentally challenged individuals. I am a caretaker for two mentally challenged individuals they are my family. Gradually over the years I have added responsibilities for them to do. I am not "professional", just a family member who has lived and loved these two for over 30 years. Some things take time and careful supervision to achieve. It appears there may have been good intentions, but very poor planning. Each person is different and no matter how many times you go over household responsibilities. There often still may need to be supervised. The state, the families, and this countries sorry mental health system has let these people down. Once you stop looking at these people as just a paycheck or an expense. Then maybe they can all get the level of care and respect they deserve.
Kathleen (South Bend)
My sister died of suicide in the 70s. She self medicated with pills and was bulimic. My father tried to find good mental health care for her at a time when a teenager doing drugs was not seen as being in pain but as an an annoyance Most of my family members struggle with mental illness. My mother received shock treatment for a Psychotic Depression in the 50's and I now have a 30 year old nephew who struggles with alcoholism and Bulimia. Other than medications, not much has changed in our compassion, understanding or affordable treatment for the mentally ill over the last 60 years. When I read this story the first thing I think of is unbearable loneliness along with pressure to appear able to live a "normal" life. The idea of transitioning from a group home to living alone is obviously all about the dollars and shoving the mentally ill out of sight. Wasn't there a plan in place endorsed by leading mental health experts? We need to consult with experts from some of the Scandinavian countries where all people are treated more humanely. Our country is barbaric and ignorant in our treatment of the mentally ill.
anae (NY)
Its clear not everyone is able to maintain their own apartment. I'm all for giving people chances at independent living with a support system available. But society can't afford semi-independent living for those who require a team of specialists, daily visits, and support available 24/7.
Michael Shawe, LCSW (NYC)
I am a clinical Social worker at a scatter site housing program in NYC. I would say a good percentage of our clients need more resources and we work diligently to keep them safe. The needs are much higher Thant he resources we are given and I think that leaves our clients vulnerable.
Case Mamager (Bergen County)
I worked in the Community Support System in NYS in 1980. Emptying the State Psychiatric hospitals was the mandate. The long term institutionalized patients often had no family support as they were reintroduced into the community. Local programs were a patchwork relying on the client to follow through on the unrealistic discharge plan. There were few day programs and without attendance at a day program clients missed out on oversight and medications. Housing, when available, consisted of rooming houses or Adult Homes. After paying rent almost all clients had $30 left for the month. $1 a day to spend on clothing, personal care, cigarettes or coffee. Budgeting was not taught at Harlem Valley State Hospital. Institutionalization was cruel. The wholesale discharge of individuals with no life skills and minimal supports was worse.
wynterstail (WNY)
I supervise a scattered site supported housing program for mentally ill, violent felons leaving state prison. No residential program willl accept them. If we didn't accept them, they would be placed in a homeless shelter with no supports. While about half do reasonably well with some assistance, the other half cannot safely live independently. They aren't medication compliant, can't shop or cook for themselves, can't clean their apartment, and worst of all, are easy targets to be exploited. At one home visit we found a man, his girlfriend, and two kids, but no sign of our client. The man claimed he rented the apartment from our client. When we found the client two days later he'd been sleeping at a homeless shelter because the man who moved in threatened to kill him if he didn't let him move in and sell drugs out of the apartment. Many of these people need daily assistance with routine activities, as well as protection. But private agencies are understandably reluctant to take them because of the risks, and reimbursement rates that are insufficient to provide enough skilled staff 24/7.
Michael Shawe, LCSW (NYC)
I think this article might be an awesome opportunity for all of us scatter-site clinicians to brainstorm and share our experiences together.
Rubad (Columbus, OH)
I have lived next door to a group home for 18 years plus. The mental health agency in my city loves to blow their own horn about how great they are. The women who live in the home, I believe, are subject to abuse by some of the mainly male caretakers. I don't know this for sure, but they invariably act afraid of them. Also, if they step out of line, they are thrown out into the street. Next stop, prison. It's appalling how the mentally ill are taken care of in this country. Instead of the institutions that existed before Reagan, the prisons and the streets are the refuges of last resort for them.
Rick (Oregon)
And here again is the failed experiment known as "deinstitutionalization." We didn't learned our lesson when this experiment began failing in the 1980's. For the uninitiated, a brief history to put this in context: well-meaning social liberals bought into an idea presented by fiscal conservatives wherein state mental hospitals would be emptied, cutting government costs and granting mentally ill people "freedom." A win-win, right? Except the result was a bunch of mentally ill people living on the streets, or in jails, or in prisons, or in nursing homes, or with families ill-prepared to care for them, or dead. In a panic, we created the county mental health system, which, among other things, presupposes that people with mental illnesses will present themselves, regularly, for appropriate treatment, and which provides social workers and other mental health professionals to check up on these folks. It is easy to imagine that people fall through the cracks repeatedly. Counties and states recognized the urgency of the situation, and did the only thing they thought they could: contract with private companies to provide housing and basic services to these mentally ill people who now found themselves with no structure. When the government pays private companies for services that could be provided by the government, there exists the likelihood that some companies will try to provide the minimum of services for the maximum money. Read the article with this history in mind.
Kathy Bayham (FoCo CO)
Could not have said it better. The pendulum did indeed swing too far. Society went from one extremely oversimplified understanding (actually just plain ignorance) of mental institutions and the mentally ill to the other extreme. No more Titicut Follies, yes, but nowhere for people with that level of insanity to exist safely. Now the streets are filled with sick and dangerous individuals who pose public health and safety risks at ever increasing rates.
Rubad (Columbus, OH)
@Rick I live next door to a group home, and I can tell you that your comments are spot-on.
RLiss (Fleming Island, Florida)
@Rick: read this article keeping in mind what was SUPPOSED to happen and did not: https://www.salon.com/2013/09/29/ronald_reagans_shameful_legacy_violence_the_homeless_mental_illness/
Jmerikson (Branford CT)
This is a program that was destined to fail. Why are the mentally ill house alone in apartments? Why not, as is customary for people with intellectual disabilities, housed in group homes under supervision?
daffodil (San Francisco)
@Jmerikson Cause not all mentally ill people are the same. Some can manage their condition on the own and don't required supervised housing. Others do. A lot of people in our society just want the mentally ill locked up in mental hospital period; the part about supervised adult facilities goes right by them. Of course, everybody should learn how to manage independent living before they are dumped will-nilly into that situation, and receive assistance to make sure they are handling the transition well. They should also have access to community mental health centers (quite a few simply see private doctors and don't need such services) and decent, safe, housing, food and medical care period.
kathy (san francisco)
@Jmerikson as the article explained, the group homes weren't suitable and often committed fraud
Middleman MD (New York, NY)
“It’s more about the numbers and the metrics, and raking in the insurance money versus actually providing quality care and services to the clients,” Mr. McCoy said. This sort of thinking is rampant throughout healthcare, and it is being driven by persons in charge who have MBAs, not health care backgrounds.
John Doe (Johnstown)
Advocating for ideals in a non-ideal world is a big part of the problem and especially in one where finding the cheapest route is the only actual ideal that matters.
Barbara (Boston)
This sounds a lot like some type of laissez-faire policy making protecting individual rights and independence over effective policy. "No judgment" taken to an extreme. Taking freedom to an extent that it should not be taken. Get government out of our lives? And in a liberal city? Tragic.
Darla (Michigan )
Mr. Clemente has bugs crawling on his angel food cake. Bugs are a natural part of life. Did anyone look to see if he had screens on his windows? That was probably the problem. It is very difficult to live in NYC without air conditioning. One opens the windows and bugs come in. Not much you can do about that if you don’t have screens. I lived in Soho. My windows were open. I had critters. The cycle of life.
RLiss (Fleming Island, Florida)
@Darla: true, but his problems go far beyond bugs.
NMV (Arizona)
@Darla Did you read the entire article? Mr. Clemente has a more serious issue than windows without screens that allow "bugs" inside. His bugs are not a natural part of life.
Allison Lizars (Denver)
Yes but Darla, he also had scrambled eggs that were infested with maggots strewn across the floor, feces caked into the rug, and half a cantaloupe that was so rotten it appeared to be “melting.” If you read the article you’d know Mr. Clemente’s unsanitary living conditions extended far past bugs on his angel food cake.
AnObserver (Upstate NY)
Regardless of the original very laudable goals, de-institutionalization was hijacked by those who only saw it as cost saving opportunity by closing institutions rather than upgrading and improving. There is not cost savings to supporting the mentally ill; either in an institution or in the community. Until the politicians stop this barbarity these people will suffer and die. They won't be easily reported on like Willowbrook or Wingdale though. They'll die alone, they'll die at the hands of some predator, they'll act out and be killed by the police. Unless and until we understand that supporting people who have extremely limited abilities to make decisions on their own is expensive and very labor intensive, this will continue as it has for the last 40 years. The mentally ill have quite literally become society's refuse.
nick (california)
This was probably a predictable outcome. Something very similar happened in the 1970's when California shut down state hospitals (which were awful) - the solution was going to be shifting the money into community care, but of course the money never materialized and people with severe mental health problems now have to have the presence of mind to maintain a hodge podge of services provided by different organizations with different rules. I think we need to realize that some people just aren't going to do well on their own and should be living in facilities - The issue is making sure the facilities are properly funded and well run rather than simply a dumping ground for people.
Liza Guy (Massachusetts)
Loneliness is an insidious distructive force. Quality care and support in the community costs money. The system is terribly broken and the will to support the cost of quality care does not exist.
Lisa C (West Palm Beach)
So New York has started to do what Florida has done for years, transitioning the mentally ill to independent living even when persons are not able? I am an LCSW in Florida who happens to have an uncle who suffers from schizophrenia. He came from NY approximately three years ago - a state where we always believed was much better for the mentally ill than Florida - and been transferred between at least thirty facilities since. The care is extremely difficult. I begged and pleaded with a judge not to discharge a man who does not (will not) answer to his birth name - to independent living. The smaller Assisted Living Facilities are comparable to those seen in horror movies, people on top of people. The staff are uncaring and heartless - should not be in the field. Needless to say, there needs to be a significant change in the way this entire country house the mentally ill. It can be done.
American Patriot (USA)
Every person in their right mind serves freedom, but if someone cannot function properly than sometimes the government needs to step in and start doing the decision making.
REM (Washington, DC)
The tragedy of the Mental Health Law Project, and its offshoots, follows the view that patients have the right to die in the streets, or in unsafe conditions with their “rights on”. The advocates for the rights of the developmentally disabled (with IQs below 70) have done much better to protect these individuals. Class action law suits, in the cases described in the article,fail to address the unique circumstances of individual levels of disability. Programs like Gould Farm in Massachusetts have demonstrated how it is possible to provide a safe setting that provides meaningful work for its residents who live in dignity and pride. The failure highlighted in the article clearly shows that having an apartment in NYC for many patients with severe and chronic mental illness is another example of unintended consequences of poorly conceived “good intentions”.
Edmond OFlaherty (Dublin, Ireland)
Not much has changed in the psychiatry world in recent years. Antidepressants, benzodiazepines, mood stabilisers and antipsychotics are still widely used but sometimes they makes the patient worse. There is an old drug which was discovered in Long Island and it helps addicts a little. The small dose, known is lowdose naltrexone works for over 200 conditions, mostly chronic pain (but not on opiates) and auto-immune diseases. Recently LDN is being used a little in psychiatry and it works for many conditions. It is not widely known but it can help sometimes where there is no other response or a poor response. Some patients with depression even take LDN by itself. I have found useful in PTDS .See www.lowdosenaltrexone.org for more information,
Thoughtful (Virginia)
I find it shocking no one is paying attention to the Walsh Foundation's protocol to reverse schizophrenia. I have a relative on the program now, and definitely on the road to recovery. Mensah Medical provided compounded supplements that are healing him; plus he had to change his eating habits. Yeah, no prescriptions. He is still on an extremely low dosage of Olanzapine from his breakdown in the hospital, but hopes to be off that within the next year.
Edmond OFlaherty (Dublin, Ireland)
@Thoughtful I attended the Walsh programme (www.walshinstitute.org) for physicians in Sydney 12 years and I have used it for over a thousand depressed patients. It works for people who have history of psychosis too but I myself leave them on a small amount of the standard medication too. Many depressed people need little medication after a few months on nutrients but some require a small dose of antidepressants still as well as the individualised doses of nutrients such as zinc and B6.I use a lab called DHA near Chicago for blood and urine tests.I often add lowdosenaltrexone as it is effective, cheap and has minimal side effects. A minor report from Harvard shows LDN (www.lowdosenaltrxone.org) is a mild antidepressant without the side effects of antidepressants. As a primary care physician (MD) in Dublin my favorite work is with nutrients and LDN, the latter too for over 200 other uses. One woman came from USA to die in Ireland due to advanced MS. After six months on LDN she sold her wheelchair, she could walk two miles and she went back to work in USA!
Sarah Smith (Buffalo NY)
@Edmond OFlaherty I have worked in the system for many years and my husband is on an ACT team. Some of the improvements he has seen are nothing short of miracles. I am very interested in different medications that haven't been tried.
Nolan (Toronto)
Seems like a clear clash between the ability for individuals with mental illness to have their freedom versus their capability to care for themselves. What I gleamed from this article is that many of the decisions to live independently were not made exclusively by the person in question, but actively encouraged by the institutions. It seemed as though in most of these cases the people who were sent to live on their own clearly were not in a position to care for themselves, which makes me wonder how they determined that they were suitable for the program. Very interesting read.
Pete in Downtown (back in town)
This reminds me very much of the disastrous "reform" to move patients out of institutions and, for many and within a short time, onto the streets decades ago. While the concept of placing patients back into the community is a great and worthwhile goal, it will, at least initially, require an additional investment (increase costs), before the long-term savings can be had. The key reason is that patients, assuming they actually are good candidates who are also stable on their meds, need to learn and re-learn essential life skills while being monitored, and that typically requires staying in a professionally staffed halfway house for several months before they can moved into the community at large. Such halfway house programs can work wonders, but the patient to staff ratio has to be kept really low for the process to work, and is thus expensive. So, the negative outcomes described in the article are, unfortunately, not surprising. Treatment decisions that are shortsightedly based on saving money right here, right now, rarely deliver good medical outcomes, and that is especially true in mental health.
Rachel C. (New Jersey)
@Pete in Downtown But what you are describing for people -- assisted living with a monitor -- is effectively a "group home" -- the very kind of facility that these people were moved out of.
Bhibsen (Santa Barbara, CA)
Adult homes are not group homes. The ones subject to the settlement discussed in this article are behemoths that are more like poorly run nursing homes. There is little to no oversight, they are often in very poor condition and they nickel and dime the tenants for everything. They are warehouses not designed to support people with SMI and the owners are usually unscrupulous slumlords whose only motive is profit. With actual appropriate community supports, which must be well funded, the cast majority of people with serious mental illness can live in the community. Some do cycle between various levels of care as their symptoms or their own self care choices effect their mental health, but statistically, the vast majority of people who get supported housing services are successful.
jean valliere (new orleans)
Sometime group homes are a good idea. Independent living often means "alone." Has is occured to any administrator, lawyer, or righteous psychiatrist (good ones excepted; you know who you are.)that individuals can form their own kind of family? That having someone to watch over you is sometimes needed? The bottom line is that group living situations, when done well, are both humane and good for the residents. Giving a severly MI patient "independence" is anything but.
Ellen Tabor (New York City)
I am a psychiatrist who works with the severely and persistently mentally ill population and I always have. The issues are two: money and treatment. Mostly money. The State does not want to spend the right amount of money on these people, and that's way more than they currently allocate. All these housing programs, to be successful in keeping patients out of the hospital, must essentially create an outpatient hospital which costs, no surprise, as much as a real hospital, if not more. Second, ever since the CMHC Act of 1964, which came on the heels of the invention of antipsychotic medication, psychiatric illness has been "demedicalized." The treatment was imperfect at best, but its very existence led to deinstitutionalization and the belief that "community treatment" was all people needed. This was and remains poppycock. We need to stop encouraging people to live their lives, "rotting with their rights on." As my former colleague, Dr. Jeffrey Geller, said, asking the mentally ill if they are happy is not the right question. Making sure they are safe and secure and have the support to manage their lives without endangering others IS. And since many will not reach this level of independence, through no fault of their own, we need to provide humane supports for them. We have consistently failed to do that because it's really expensive. (There is much, much more I can say, but I'm almost out of characters.)
Lisa C (West Palm Beach)
@Ellen Tabor I agree with you, Dr. As an LCSW also working with this population for almost twenty years, the bottom line is always money. Unfortunately this group's work history (or lack thereof) does not afford adequate social security income. As such, they are most times thrown in privately owned 1/2way houses with sub-care and staff who do not know enough to provide ongoing education, treatment and support. In this country, we neglect and throw away anyone who does not produce income or does not have the mental capacity to cast a vote.
daffodil (San Francisco)
@Lisa C Where is Supplemental Security Income and Medicaid?
Phyllis Sidney (Palo Alto)
@Ellen Tabor Please send a second comment with more remarks. Really elucidating, which is unusual among comments.
SAO (Maine)
Where is the semi-independent living? Why is the choice always between a home where the residents can't even take a 5 minute walk on their own and an independent living where they only see their support person once a week or month? Semi-independent living would allow some people more freedom than a care home, but more supervision than independent living. For people making a transition, it would them time to build skills. Before my brother moved to independent living, my mother spent years teaching him to cook. It's not that cooking is so difficult, it's just that it took time for him to build up a repertoire of techniques, recipes and menus that he could execute adequately all of the time. That weren't prone to burning, taking too long, being unhealthily undercooked, etc.
Meghan (Albany, NY)
This story leaves the reader believing that it is independent living for people with serious mental illness which is the problem. It is not. The problem is that NYS has once again developed a comprehensive package of promised services, but has failed to deliver. Rates are set so low, case workers have case loads that are too large for them to be truly responsive to each client's needs; pay is so low that it is difficult to get quality workers to do this difficult work; and there are not enough providers to provide the services promised. The Department Of Health also pays home care workers levels just above minimum wage. As a result, providers can't recruit enough home care workers; the work is physically demanding, and they could make more working at Burger King. I would love for the New York Times to cover the chronic under funding of community-based services from this administration. The state budget is due out, and I'm sure this Governor will come up with some expensive headline grabbing proposals, while quietly starving essential community-based programs.
Bucketomeat (The Zone)
@Meghan Here! Here! I work for an agency supporting people with DD/ID in NY and witness this on a daily basis. The skill set required of people who do this work well far exceeds their compensation. Couple this with the fact that these low wages come with the risk that they can lose their jobs over allegations of abuse and neglect (both founded and unfounded), and the incentive to avoid this line of work is great. I work with some amazing colleagues who are professional nurturers and they subsidize with their meager wages the luxury of the rest of society to either ignore these fellow human beings, or to self righteously claim they provide support for those less fortunate than themselves....and then receive income deferment through tax breaks for,charitable contributions. This has to change.
Bhibsen (Santa Barbara, CA)
Hi Meghan! Miss you!
Tomas O'Connor (The Diaspora)
I was a Program Manager at a residential correctional facility with 180 beds that provided custody and treatment for inmates with co-occurring substance use disorder and mental illness. We had in house standards compliance officers that made certain our operations were in sync with best practices. We instituted Total Quality Management systems to find out what worked and what didn't. We had the near unanimous support and appreciation for the humane and effective outcomes we achieved for those in our custody from judges, probation officers, district attorney's ,family members and law enforcement. One judge said that all we needed were 10 more facilities like ours in the state to achieve the dramatic results he had seen during his tenure. And we did it for 1/4 of the cost of running a private facility and 1/2 the cost of operating a traditional correctional facility. Humane, cost efficient care is possible with the right set up.
Patricia Cross (Oakland, CA)
When Ronald Reagan was governor of CA (late 60’s) he shut down all the state mental hospitals/care facilities because no one should have to be committed against their will. Well no one wants this even if they are not fit to make that decision. In saving tax dollars, he unleashed an entire population on the streets. When I graduated from UC Berkeley in 1967, the streets and shops around the campus were relatively quiet (despite the protests) and still genteel enough for my husband’s mother and grandmothers to shop for nice suits on Telegraph Ave near the campus. My husband I returned in 1970 for grad school and the Avenue was an entirely different place. Thanks to Reagan’s shut down, there was only the sidewalks to sleep on, shoot up on, beg for food and money. This is not a put down by any means. But Vietnam vets were returning to the streets if they were too damaged by the war; many had been introduced to drugs and those were easy to find on the streets. Lack of sympathy and health care caused an erosion that is still a challenge to reverse. We see it still today.
wyvern7 (apex,nc)
@Patricia Cross In my opinion you have hit the nail on the head. I am a parent in my 70's . (Vietnam vet) living with the full awareness that my Bi-polar son has a diagnosis, no cure and no means to support himself. His choices become hospital, or homeless shelter. Neither provides this college graduate formerly employed young father with the opportunity to lead his independent life. His "opportunity to fail" has led to more than a dozen hospitalizations in the last decade.
Kate (Tx)
I could write a book on the last 35 years of my life with my sister who was diagnosed with schizophrenia in high school. As a loving family member, the "system", whatever state it may be in, is not designed to support those with serious mental illness. It always amazes me that there is more support for individuals with substance abuse than those with serious mental illnesses which are, in effect, diseases of the brain wholly outside of that persons control to prevent. The stigma of mental illness has meant decades of not disclosing the illness to family and friends. It is a lonely, stressful, depressing struggle. Often family members are treated as the enemy by hospitals who insist on the patient's right to privacy and freedom without any realistic concern or understanding that there needs to be a balance and common sense. We are the only ones who care about her. We will be there when it falls apart and help put her back together. We've learned that. Yet we are treated as the enemy when she needs to be hospitalized. I'm thankful that some states are at least trying to address this overlooked population of amazing and gifted people. I'm not sure it's realistic to think my sister (or some of the patients in NY) will ever live a fully independent life but our hope has been that she can find a place that offers support, structure and access to mental health treatment to allow her to enjoy her life. Freedom without that support and structure is inhumane.
Vee (midwest)
I also hold a "masters degree" in social work. Go back to Reagan to see where it started to fall apart. They shut down the "mental homes" and turned out the clients to the communities. It has NEVER worked, and continues to not work. There are people at large in subsidized housing who have no care, no case managers at all. As a case manager, therapist, home visitor, and parent educator (now burned out and left the position), I never earned more than $28K (in 2003).
wyvern7 (apex,nc)
@Vee I respect your lived experience. As it happens I have two masters, One in Special Education and one in Systems Management. However, had I not been able to complete a career in the Army first, I would never have been able to afford to work in a second career as a Special Education Teacher, and ultimately administrator. Many of my former students I am sure have been faced with the failed system. We all want a simple solution. Yet there is none. Behavioral Health requires resources, trained,skilled well paid practitioners. Clearly the 28K you mention does not fill the bill.
jwp-nyc (New York)
It costs approximately $168,000 to keep one New Yorker caged in a prison. The flip side is that adult home operators running their enterprise, "like a business" look to minimizing the problems of supervision. This usually means overmedicating and undertreating clients in need. A lot of this boils down to spending money up front on caseworkers and really screening clients. Not a state budget priority, yet they will spend ten times that to jail someone. Alternatives to Incarceration and detention often overlap with the same populations: ones in economic need who have been subject to institutional neglect in the past. The problem is that once the state grinds its way to 'settling on a solution,' they become adamant about imposing it universally for economy of scale, and ease of administration.
jwp-nyc (New York)
@jwp-nyc To clarify, that's approximately $168,000 per/annum to jail a New Yorker. Compare that to the paltry budgets set aside for supervising alternative housing and the lack of care and follow up becomes suspect.
Kibi (NY)
In 2004, I set up a program at an adult home aimed at helping people pursue independent living. The home had been bullied into accepting the program and did everything they could to undermine it. I learned that adult home operators hate change. They like docile, easy-to-manage residents. They don't want them to leave and be replaced by an unknown but very ill person who is not used to the home's routines. Understandable from their point of view, but not a force in favor of less restrictive settings. I also learned that many residents don't really seem to mind. I'm surprised to read that hundreds of such residents have tried independent living. In the year I was there, no one did.
Rachel C. (New Jersey)
@Kibi It could also be that people, including the mentally ill, are social creatures, happier with a group of people they already know than "free" but totally alone. Independent living doesn't tend to make any of us happy, whether we are ill or not -- what helps us is a feeling of connectedness.
Teresa (NY)
As someone who also fell into the system and was homeless for a few months, this truly broke my heart. I hope he finds the right people to help him and I hope he lives a beautiful life that he deserves to live.
mary bardmess (camas wa)
There is no rule that adult homes have to be criminally mismanaged and it was a serious, but money saving, mistake to close them instead of fixing them. We have laws. We could enforce them. I remember when Reagan closed Pacific State Mental Hospital when he was governor of California. It was tragic. I'm so tired of hearing about compassionate Republicans all week. It's a lie. There is no such thing.
RachelK (San Diego CA)
Before Reagan and his ilk dismantled it, our country had a system of care for developmentally disabled and mentally ill populations. There was a place for them to be that was far safer than the streets. We need to rebuild these institutions.
Bucketomeat (The Zone)
@RachelK Well....yes, and no. Yes, there were long-term care facilities, but no, we don’t need to rebuild those institutions, but different ones. No, because on the extreme, we have bad examples like Willowbrook. We need a well funded system with a professional staff....professional starting with the direct care people who are trained on an on-going basis, and well compensated so the work is seen as a viable career.
mary bardmess (camas wa)
@RachelK Ronald Reagan is the father of this dumping. it happens at all levels, from students with special needs being dumped into "full inclusion" regular classrooms to the mentally ill being dumped onto the streets. Fact: it's cheaper. "Freedom is just another word for noth'n left to lose...." People who are uncomfortable with this level of cruelty should consider not voting for a Republican, ever. They are opposed to taxing rich people to fund help for the helpless the poor and disabled.
Tony (New York)
@RachelK Reagan has been out of office for over 30 years. Bill Clinton was president for 8 years and Barack Obama was president for another 8 years. Why didn't they put the system of care back into effect? Too easy for you to blame Reagan, when it is really too difficult for you to blame Clinton and Obama for their failures. Democrats control the New York State legislature and governor's office. Reagan has nothing to do with the failures in New York.
Ben (NY)
This is best for the budget, not individuals. One size never fits all.
Radical Inquiry (World Government)
I am a board-certified psychiatrist. If Mr. Clemente wants to live better, he should act like a civilized adult and get a job.
DUFEU (New York)
@Radical Inquiry Your reply indicates that you are in the wrong profession. It is a difficult problem which requires caring professionals and all parties to be honest, understanding, practical and not simply political. Family caregivers can provide sound advice and hope. The article does not address those living with their families who bear almost all of the burdens that the world does not know or care to know about. I am not looking for a position. But our insights can be valuable. How can we make these citizens more acceptable to the main society when they show their best efforts. Isolating, alienating, or exploiting them will not improve their conditions. Like anybody, they need the respect and love to survive in any society. My sister has been living in a state institution for over 40 plus years. I do not want to bring her home without at least a nurse aide working full-time. She spends Sundays with the family. Yes, she deserves to come home. Realistically, it is not possible at this moment.
E (CA)
@Radical Inquiry You may want to consider switching fields or reevaluating your education. Schizophrenia is a brain illness with varying levels of severity, that typically starts when people are young likely due to neural pruning gone awry. It can take years for someone to find a suitable medication that enables mental stability with tolerable side effects. Some people also may not find a medication that works for them. Consider for a moment that your medication may cause you sedation, Parkinson's like symptoms and neurological movement disorders like dystonia. You may also want to consider the effects of someone on a dopamine suppressing antipsychotics. Because dopamine is associated with motivation and interest, antipsychotics often leave people unmotivated on a biochemical level. I can promise you that people suffering from schizophrenia with insight would rather be healthy, have a job, and nourish relationships. It's comments like this that make me wish there was more serious scientific research to treat schizophrenia, which should really be treated with the same dignity and respect as people who get other brain illnesses like Alzheimer's or dementia (which all of us may get if we live to a certain age). I am most hopeful about schizophrenia research that appears in its infancy related to using AI to scan MRI brain images to help determine effectiveness of antipsychotics and other stem cell related research. Some of this is being done at Stanford University.
TheraP (Midwest)
@Radical Inquiry I doubt the veracity of your first sentence. (I say that as a retired Clinical Psychologist.) Your comment is unhelpful, uncaring and undermines your asserted profession - for if your name were public and your first sentence correct, who would seek you out? On the other hand, DUFEU has my admiration. Someone not a professsional dealing with mental illness. But a family member. In my years as a therapist, I was always saddened when families called me in desperation due to a missing mentally ill family member or the lack of social services for themselves and their loved one, whom they were often left to care for on their own.
Chris (Portland)
In 1980, I was a cashier at the National Gallery of Art in Washington DC, one of those big museums on the Mall between the Capitol Building and the Washington Monument. I was a student at American University, and got into the habit of walking the hour and a half to and from work everyday. One winter morning, things seemed different. Are there more people standing over that steam grate, trying to get warm? I brushed the thinking off, I was only 20, and couldn't fathom any reason for a spike in people living on the streets. Until I got to work. I entered through the basement, since the museum wasn't open yet, and saw people laying on the benches in the fancy wainscot coated tunnels linking the museums and more. I asked one of the guards what was going on. Veterans' get preferential hiring for the federal museum guard positions - at least they did then. "Reagan closed all the public and veteran mental institutions", is what the guard told me.
JSH-BK (<br/>)
“After months of questions from ProPublica and Frontline, the state released some numbers in mid-November: Of the 764 people who have moved so far, 32 have died and 39 have returned to adult homes.” What are these numbers? What 764 people have moved where? Is that the total number of clients in every scattered site apartment city-wide, ever? Or in November? I’m not seeing the overall scale of a system that provides services for tens of thousands of clients.
Yesterday I saw a bumper sticker that said, “Don’t steal - the government hates competition”. As a veteran public school teacher and a family member of a couple disabled people, this attitude infuriates me! If we can’t pay our share to provide minimal services to our neediest community members, we are doomed as a country! I realize that the people in the article were getting apartments, etcetera, but the whole social service system is a mess because of inconsistent funding and low wages for public servants. I’ve seen huge turnover of social workers here in Oregon and I’m sure it’s similar elsewhere.
asdfj (NY)
@M "If we can’t pay our share to provide minimal services to our neediest community members, we are doomed as a country!" [citation needed] Also, don't confuse "can't" with "don't care about." We certainly could if we as a society decided we wanted to, but there's no ROI.
Lisa C (West Palm Beach)
@M You're absolutely right and for those that remain on the job, I assure you they have to hustle off to the next one in order to support themselves. Social service work is demanding and difficult with low wages. Those of (us) that enter the field do so because we love to care and advocate for those who can not do so for themselves. Again, this country neglects and throws away persons who do not have income or the mental capacity to cast a vote.
Mimi (Baltimore, MD)
How sad. Is money that important in our society that decisions on the care of mentally ill people is made based on cost? These adults certainly cannot care for themselves in independent living conditions even with the best of daily outside help. The sudden onset of a psychotic crisis can occur with any number of outside incidents unexpected and uncontrollable. Even something on television. This is reckless and irresponsible - and quite frankly inhumane. Children with emotional, developmental and psychiatric disorders have also been put back in their homes where parents are ill equipped to handle them. They attend special schools where clinicians and teachers attempt to provide them with supposed skills for living beyond age 18 but these methods are also faltering.
Bhibsen (Santa Barbara, CA)
@Mimi "These adults certainly cannot care for themselves in independent living conditions even with the best of daily outside help." Actually, that is not true. The article even mentions that a big part of the reason people have decompensated is because they have not received the services they were promised as part of the adult home settlement. Under the agreement, the state will provide as many scattered-site, supported housing units as necessary to afford all adult home residents with serious mental illnesses the opportunity to live in the most integrated setting appropriate to their needs, and will provide and maintain community services and supports including but not limited to:  Care coordination  Psychiatric rehabilitation services  Employment services  Assistance with taking medication  Home health care  Personal assistance services  Assertive community treatment  Crisis services These services have either not materialized at all or have been deliberately and vastly underfunded so as to make them failures before they were ever implemented. Care managers have upwards of 160 cases and often only contact people by telephone, if they can reach them. This is not what was meant by intensive support. I have said it many times. If you want the car to drive, you have to put gas in it.
Mimi (Baltimore, MD)
@Bhibsen You misread the intent of my entire paragraph - I should have made clear the linkage between that thought and the rest of the paragraph. My point is that regardless of how well someone might appear to be getting along in independent living with all of the assistance provided, their mental states are extremely fragile and the most seemingly insignificant matter can trigger a psychotic crisis. As I said, even something on television or a comment by a neighbor or a by-stander at a bus stop. IMO, there is just too much risk to their own safety in independent living. 24/7 oversight is responsible and necessary.
Bhibsen (Santa Barbara, CA)
@Mimi So actually I did not misread what you stated, it is merely incorrect. The vast majority of people with mental illness, even with the most severe mental illness can and do live independently in the community with appropriate supports and with crisis intervention services. It is not true that "the slightest and most seemingly insignificant matter can trigger a psychotic crisis". All of the evidence shows that it is a cumulative series of stressors that triggers an acute crisis, and that appropriate, evidence based support and early response can more often than not respond to a crisis. Additionally, if there were inpatient beds in communities to respond to crisis, and if we had a health system that allowed people to get the help they needed when they need it, almost any acute psychotic crises can be addressed with minimal disruption in an individual's life. The problem is that the system is designed in such a way that an acute crisis leads to the loss of ones job, home, custody of one's children, self agency and nearly everything that keeps one stable, so one hospitalization can lead to homelessness, which leads to ongoing lack of treatment, which leads to ongoing psychosis. Fix the system and in fact the vast majority of people with mental illness can live meaningful lives in the community.
Walter McCarthy (Henderson, nv)
Millionaires and billionaires still need tax cuts.
Pamela W (Washington, DC)
As a people, to the least of these we give the least.
Andrew (Pinehurst NC)
This is one more chapter in our society's neglect of the mentally ill. Since the 1960s when the drug companies and misquided activists persuaded budget cutting legislators to dismantle our mental health care system, chaos has reigned leaving the street and the prisons as our solution for mental illness. Shame on us.
daffodil (San Francisco)
@Andrew In California, not even true. The beginnings of the chaos started ten years after the "asylums" were closed. Escalating housing costs and decreasing community services and short-term beds for people with diagnosable serious mental illness was the cause
Mental Illness Policy Org (NYC)
The unholy alliance between civil libertarians who believe being psychotic and delusional is a right to be protected, and a state Governor who wants to empty hospitals at all costs, is putting patients, public and police at risk. While the population of Riker's is going down, the lack of hospitals has caused the number and percent with mental illness to go up. Meanwhile Mayor deBlasio and Chirlane McCray focus their $850 million ThriveNYC on pop-psychology programs for the worried-well, rather than reducing homeless and incarceration of the seriously mentally ill. When will the madness end. DJ Jaffe Exec. Dir. Mental Illness Policy Org. http://mentalillnesspolicy.org
Darwin Bearhead (Upper West Side)
@Mental Illness Policy Org Bingo! The Mayor & his wife a know-nothing dabblers wasting money on projects that do nothing. The money should have been spent on people with serious mental illness rather than on Chirlane's vanity project.
Bhibsen (Santa Barbara, CA)
@Mental Illness Policy Org Dr. Jaffe, your argument, as usual, is disingenuous and overgeneralized. First of all, how dare you call people the "worried well", when, as you well know, 1) depression kills many more people than schizophrenia or other disorders involving psychotic disconnection from reality. 2) Most of the mass killers whose crimes you exploit to promote your agenda have been people suffering from depression, with a very few suffering from a psychotic break. Translation, the "worried well", as you call them, are the ones posing the danger. 3) Your organization does not put weight behind sensible gun control measures because you would rather support conservative politicians who support your agenda, which is to return to methods that have been proven to be unsuccessful 4) Your entire agenda is based on re-aligning federal funds to treat "only the most seriously ill", but that represents, by your own statistics, only 4% of the MH population. What did you intend to do with the rest of the money? 5) You argue for the re-opening of costly mental hospitals where people are hidden from public view and where abuse was (and is) rampant 6) This article is about adult homes, not hospitals and I cannot imagine why you would be arguing on behalf of adult home operators when people living in adult homes are just as free to wander the streets as people living in independent apartments.
paul (san anselmo)
Here's a humane example of how we might consider treating those living independently with disabilities. "Being Seen" https://vimeo.com/174385874/6ee5d1a6d9
Jim (Houghton)
It all starts with "take your medication." A "cutting edge" program that does not include the absolute certainty of medication being taken -- every day, forever -- is a waste of time and money. I am not a health-care professional, and I realize this. How is it that the state of New York does not??
Ellen Tabor (New York City)
@Jim The State of New York, along with quite a few other states, has been brainwashed into misunderstanding the difference between liberty and freedom. Acutely psychotic individuals need treatment; it is cruel to deny them this, even when they disagree. Who of is the best judge of our needs? Hardly anyone. The State, colluding with the Mental Hygiene Legal Service, works mightily to have patients discharged from the so-called prison of the hospital to...what? Nothing. Absolutely nothing. The housing that every governor promised them in exchange for closing beds...was never built. Community Mental Health Centers, Health Homes, Case Management, ACT services...all over-subscribed and unavailable to the vast numbers of people who need them. Once people are stable, they are sent to a lower level of care or discharged outright, which starts the cycle all over again. Yes, indeed, the mentally ill need to take their meds (as do people with other chronic illness). The State has all too little investment in insisting that they do. It's a shande.
Easy Goer (Louisiana)
This is a classic example of (caring people) doing something well meaning for sick people, then it becomes worse for them. "The road to hell is paved with good intentions". Yes, this may be a cliche', but it still applies.
Dr. M (NC)
There are no doubt many problems, especially around adequate funding, highlighted in this article, and the comments. I appreciate The Times' attempt to paint a more complete picture of the problem, although the framing feeds into a persistent ignorance. What does success look like for an effort like this? So far, I read that there's about 5% death rate among those who have so far moved, and another 5% moved back to institutions. 90% have not died and have not moved back. What are the comparable mortality rates for those with a more serious mental illness, mortality rates for those lingering in institutions? What percent have had a chance to get a job (compared to those in institutions), or have a partner/relationship of their choice (compared to those in institutions)? As pointed out by others, if the concerning behaviors alone are what you'd like to sweep away, that's a much bigger broom and infringes on many personal rights. If behaviors stem from illness and/or lack of supports, training -- then that cuts back to providing the right level of care (which is available in many places, and can be even better with higher and more stable funding streams for providers). There are many layers of accountability absent in our larger system of care.
Caregiver (MD / NY)
@Dr. M - What's more, the article proceeds to pat the NYT on the back for winning the Pulitzer Prize back in 2003 for the story that set in motion the very sequence of events leading to the outcomes the article bemoans. Which does not suggest that the previous conditions weren't horrific, nor that that the Times bears responsibility for these outcomes, just that responsible policy involves more than highlighting outrages.
Jonathan Beard (Seattle, WA)
A sad tale. We can do better. Supported housing can and does work, even with people who have significant disabilities. The key is the support provided. Some, perhaps many, require intensive supports and skills teaching to handle their affairs better. This psychiatric rehabilitation approach can be successful. But, not with high caseloads and only seeing people several times a month. Daily contact, sometimes all day, is where the good work can take place and results seen. Staff need to be skilled and compassionate. This can be tough to attract and retain if you don’t pay much. People with disabilities are vulnerable and legally entitled to protection. We can do better. Much better.
James (CA)
Jean Varnier Larche has demonstrated a model that works. Independence should not mean isolation and freedom should not mean no supervision. There is a wave of dementia coming with the baby boomers and we need a workable solution for varying degrees of need. Live in staff and community homes are a good start. Liberty and independence can be associated with living support homes that are not locked facilities but provide medication assurance and hygiene control. There are varying degrees of need with varying degrees of cognitive incapacity which change over time, how can that situation not require some form of supervision.
daffodil (San Francisco)
@James Not known, schizophrenia has been known to improve overtime, albeit often with significant cognitive limitations.
Jim Mutton, Director Of NYC Operations, Concern For Independent Living (Washington Heights, NYC)
The article mentioned a funding rate that aims to support transitioning such an important population back into community settings that they so rightly deserve. However, it does not mention that this rate doesn’t even cover the cost of fair market rent for a NYC apartment, let alone provide essential support services. Without appropriate funding for supportive housing in New York we will continue to struggle with a woefully inadequate system of care and place our loved ones at unnecessary risk. For more information on this dilemma, please visit www.bringithomenys.org
Location01 (NYC)
Why is this surprising. This is all over NY and CA. Severely mentally ill people need FT and possibly permanent care. It will cost billions of dollars but it's necessary. A large majority of the homeless are mentally ill and we let them rot of the street as though they're pests and not human beings with pain and suffering. We need to rebrand and rework Asylums that are based on compassionate care and offer therapy. Instead the prison system is treating these people. Putting a roof over someones head that mentally ill does not solve the mental illness problem. They need real help and just like the NYCHA NYC can do nothing right. The dems run CA and NY and I don't know why we are not up their throats about these issues. They are suppose to be helping people instead all of these problems are skyrocketing right before our eyes. Our POTUS has very serious problems, but the one point of truth was that he said we need to bring back the asylums and he completely correct. What we have now is a disaster.
Amv (NYC)
@Location01 The impact of this strategy (or lack thereof) is also felt by all our other social institutions--libraries, law enforcement, the subways. How many of the "sick passenger" delays on the NYC subway system can be traced back to the mentally ill homeless with no other place to go? How many librarians are functioning as de facto social workers?
Amv (NYC)
@Amv I would like to add, however, that I support independent living and supportive living for as many people who can manage it. But it all goes back to funding--fund institutions poorly and you will have atrocious results, fund supportive living and you will have atrocious results, do nothing and you will have atrocious results. Yes, these people cost society a lot of money, no matter which way you slice it. But they are human beings and deserve human rights, compassion, and proper treatment.
Bhibsen (Santa Barbara, CA)
@Location01 You are incorrect in your assessment. Even in the examples in this article, intensive supported case management, or, in some cases, a congregate care facility, (more commonly known as a "group home") with appropriate levels of staffing and support would have averted catastrophe. The settlement was to entitle adult home residents to the following: Care coordination  Psychiatric rehabilitation services  Employment services  Assistance with taking medication  Home health care  Personal assistance services  Assertive community treatment  Crisis services The Department of Health and the Managed Care Organizations set rates so low for these services as to make them unsupportable, so very few providers stepped up and those that did were overwhelmed. You don't get to put a quarter tank of gas in the car and then wonder why it was unable to drive for 500 miles. Also, when the settlement Clarence Sundrum stated “With the right services, virtually all adult home residents with mental illnesses can live in their own homes and be full members of their community,”. Note the phrases "with the right supports" and "virtually". These are very important because it has always been acknowledged by those of us in the recovery movement that some may need more support than others and that some may need or choose to live in a more structured setting. That said, with the appropriate support and monitoring, people also do have the right to try and fail. The key is the response.
pkbormes (Brookline, MA)
This piece spends little time discussing what it's like for others in public housing settings who have to live among people who cannot take care of themselves or their apartments. The roaches, mice, bedbugs, feces and filth in one apartment effects the people living nearby. It's a public health disaster. Additionally, the physical damage to apartments for the inadequately cared for mentally ill is extremely expensive for the taxpayers who ultimately pay for public housing. "Freedom" at the price of destruction to self and others is not freedom. Yes, the pendulum has swung too far.
Bhibsen (Santa Barbara, CA)
@pkbormes It is not "freedom" that is the problem. If we return to asylums and huge adult homes, the problems for the individuals being served do not go away, they just go out of public sight. The lawsuit occurred because people were living in horrendous conditions in adult homes, some of which included the very conditions you described and are described in the article, only no one could see that it was happening because adult homes are private property with little oversight or monitoring, so people were just allowed to suffer for years out of the public view. The same goes for inpatient hospitals. I agree that the availability of inpatient hospital beds is vital, but they should be located in people's community hospitals and the goal should always be eventual discharge with appropriate supports. The problem is, when you drastically underfund those supports, you get stories like this one, which paint the problem as people being let out of institutional settings as opposed to people not receiving the support they need to live meaningful lives in the community.
daffodil (San Francisco)
@Bhibsen They were not living in asylums to begin with, but apparently a good number did not need the heavy supervision and restrictions of the adult facilities where they were forced to reside. This part of the article is ignored by so many who want only to lock people up and banish them from their sight. Their failure to see other alternatives reveals their true motives.
Phyliss Dalmatian (Wichita, Kansas)
Sure. Let's allow Toddlers to live alone, and extremely Dementia addled persons to do the same. What could possibly go wrong ??? If a Family allowed their Relative to live with them under these conditions, they would be charged with neglect and endangerment. Ridiculous.
Joanna Taylor (Wyoming)
My son died in April 2011 in Salt Lake City when money saving measures in the way care for the severely mentally ill was delivered were made. He was deemed fit to care for himself in an apartment. He had to go ten blocks every day to get his medication. He was given a turkey to cook and very nearly burned down the apartment building when he put it in the oven with all the wrappings. The strong medication he took made the voices and impulses recede but slowed him down physically. For several months he survived due to the kindness of friends, but ultimately he died alone. We were thankful that at least he was inside not in the street where much of his adult life was spent. Schizophrenia is a horrible disease but those who suffer have much to offer if they are afforded the care that can give dignity to life.
marian passidomo (NY)
When did supposedly educated, sane individuals such as administrators of programs for the mentally ill start to believe that the mentally ill can and should live on their own? Have they even seen these unfortunates lately, trying to live and interact with others? If they were sane they would not have been in the system in the first place. Mentally ill people need care and care givers constantly and consistently or they will dissolve into the worst of their mental illness. Just get to know one to judge for yourself.
sedanchair (Seattle)
@marian passidomo This is the reductive, overgeneralizing attitude that got us to this point. Many people classified as mentally are in fact capable of living on their own--the article mentions this, but focuses on the least successful cases. The thing is, there will be "least successful cases" no matter what approach is taken. If there is no push to get people independent and into housing, some will be kept in group homes against their will through the same bureaucratic inertia that put up barriers to their discharge.
@marian passidomo "If they were sane they would not have been in the system in the first place" Wow what a blanket statement about the millions of American's that suffer from mental illnesses of varying forms and serveries. Simply untrue and highly presumptuous that Just get admitted to a psychiatric hospital for even a few days and judge for yourself.
marian passidomo (NY)
@marian passidomo I know what mental illness is and have dealt with it and cared for people with it. Much as one would like to have mentally ill people care for themselves, they need a great deal of supervision and help. It isn't a denial of independence to provide the supervision and help that they need-it's simply humane.
Nancy Zurbach (Augusta,Maine)
I am a family physician who works with the local ACT Team (assertive community treatment). We struggle daily with treatment adherence, substandard housing and now the invasion of substance use. We respect our clients' autonomy and are haunted at night by how so many are suffering in their illness, in their inadequate places of living, in their wealthy country. The more I think, the more I feel, the more I read for me it comes down to this: some people are considered "worthy " and some "unworthy ". The people with cognitive disabilities, addiction problems, who live in poverty-- well , they are not worthy. Whatever happened to respect for people?
mary bardmess (camas wa)
@Nancy Zurich Good question. Ask a Republican. Pick any one, but I'd start with Ronald Reagan's daughter. She's always reminding us of what a wonderful person he was.
daffodil (San Francisco)
@Nancy Zurbach I wholeheartedly agree with your statement. Just because someone has money, status, privilege and power in our society does not mean they are anointed to decide who lives and who dies, who suffers, and who does not not.
This is a very depressing article. There is clearly an underlying thread about money and saving money which is disgusting when we are talking about someone's life and that someone happens to suffer from a serious mental illness, like Mr. Clemente. As in any venue of social service, the case workers are overworked and sufficient supports cannot be put in place to help people. The article cites some numbers of people released to independent living, success rates, failures, etc ... and it does examine how many factors are ignored. This is probably the most crucial piece for me - some people can live independently and others cannot. Mr. Clemente could not. Once someone transitions to independent living they need far more support than a monthly visit from a caseworker. They need outpatient programs with daily activities and social interactions. These outpatient programs need to have a nurse, a psychiatrist and possibly also a pharmacy. Outpatient programs are not mentioned in this article. How does someone go from assisted living (meals taken care of, medications given, a social environment) to living on one's own and having to manage all of these tasks?
Oh Please (Pittsburgh)
The idea that severely mentally ill people need 'freedom' was big in the 1970s. The state institutions were starved of funds and eventually shut down. One expert recently wrote an article blaming "One Flew Over the Cuckoo's Nest" for the assumption that institutions were terrible and full of sadists. Another popular movie of the era, "King of Hearts" celebrated the idea that mental illness may just be charming quirkiness. Despite the 'freedom' rhetoric, much of the impetus for change was actually financial. State facilities were created to care for the mentally ill, but in our tax averse society, they were too expensive to keep up. Any family that has a member with severe mental illness knows the 'freedom' movement is a farce. We need caring institutions with fully trained, highly paid staff. Our society is just not willing to pay for for them.
Moira Rogow (San Antonio, Texas)
@Oh Please No matter what we do as a society, there will be someone there to take us to court.
cheryl (yorktown)
@Oh Please We do need congregate care places that are well staffed, However just as some "adult homes" abused and mistreated residents but grabbed the money, government institutions sometimes abused patients and residents: the problem is in thinking that there is any system for helping those who do need - not just support, but direction - and sometimes administering of meds - that doesn't require funding and close monitoring. When the budgets is squeezed care gets squeezed. I wish the words freedom and independence weren't thrown around so often. If someone is seriously mentally ill, their real "freedom" has already been limited by the condition.
Caleb (Brooklyn, NY)
@Oh Please Note though that at the same time that beds at state mental-health institutions were taken away in the 70s, tens of thousands of beds in state and federal prisons and jails were provided to replace them, weapons in the so-called "war on crime." Taking care of mentally ill people properly might've been too expensive, but warehousing them in newly constructed penal institutions certainly wasn't
JoAnn Piazzi (Briarcliff Manor, Ny)
My heart goes out to Mr. Clemente. I encourage independent living for people labeled mentally ill, but the key is support. Continuous, on-site, multi-faceted support, including medication management if needed, talk therapy, self-help and recovery skills, personal care aides, and so forth. Support such as this is not cheap—as soon as your article mentioned the state would save money on the program you investigated, it was easy to predict the outcome. Advocates such as Mr. Zucker may have their hearts in the right place, but that is simply not enough. Recovery from serious mental illness is possible, but it is hard, for both the person labeled mentally ill and the system and people trying to facilitate recovery. Independent housing may be a step toward recovery, but it requires a lot more than an apartment. If a person has not bought into recovery, all the freedom and independence in the world will not do him or her, or society, any good. Advocates often forget that everyone, even people labeled mentally ill, need to be held to the same standards for living in the community as anyone else. Starting fires in an apartment, for example, should not and cannot be tolerated. Solving the problems and issues presented by serious mental illness is hard, but not impossible. Just putting people into their own apartments and saying they are better off because they are free will not do the trick.
Steve (New York)
Nothing new to any of this. We go back and forth over whether hospitalizing people with severe mental illness is proper or an infringement on their right to be crazy. There is one constant through all of this. We've never, ever provided sufficient funds to adequately care for the mentally ill. It's one of the few things conservative and liberals, Republicans and Democrats refuse to do. And this includes those liberal icons the governors Cuomo and Jerry Brown all of whom cut funding for the care of the mentally ill in their states and the incoming governor of California has said he believed psychiatry does more harm than good and believed funding for these services be cut. Newspapers have been publishing stories on the inadequate treatment of the mentally ill stretching back to the 19th century. During that time we've had the introduction of antibiotics, the elimination of cholera, yellow fever, and malaria from the U.S., effective treatments for many forms of cancer and many other major advances in medicine. Yet we still can't provide sufficient funds for the adequate care for the mentally ill
misc jones (middle of nowhere, PA)
@Steve Or, I might add, money for research into better medications that are better tolerated and have fewer egregious side effects. The pharmaceutical companies have gotten out of that business (not profitable) and there's very little going on research wise, as I understand it, at the NIMH these days. Short shrift in so many aspects of their daily care needs and medications with few improvements in the past 50 years. What other group of very sick patients can compare with this sad state of affairs??! And the people who are stridently advocating for this group are advocating for more personal freedom? and ability to be isolated and more at risk in an apt? They need to get real for the folks with serious mental illness. The disability rights folks (and I consider myself a progressive liberal) seem to getting getting this particular thing all wrong. How about putting that passion to work in getting better supervision, more humane conditions in adult home, and better medications?
E Wassenaar MD (Denver)
When writing an article about the wish for humanity for persons with severe mental illness, please be diligent about using person first language - a person ‘has schizophrenia’ rather than ‘is schizophrenic’.
Kaleberg (Port Angeles, WA)
@E Wassenaar MD Exquisite sensitivity to language is not going to help desperately sick people living in life threatening conditions. Virtue signalling takes energy that should be applied to solving the problem, and it drives away potential allies. It's a form of self-indulgence, and it does more harm than good.
Kirsten Danis (New York)
@E Wassenaar MD Thank you for pointing this out. We changed the language. Kirsten Danis Deputy Metro Editor, Investigations
Bhibsen (Santa Barbara, CA)
@Kirsten Danis I have to say that I think this article is a bit biased and irresponsible. Of over 700 people who have moved, you cite about thirty who had difficulty, some of whom moved back into adult homes. You include no statistics about what the quality of life was for people with mental illness who were and are living in adult homes. You barely mention the primary root of the problem, which is that the services that were supposed to be included as part of the settlement either never materialized or were so vastly underfunded as to be doomed to failure. You also fail to mention that, statistically, based on your own facts, an astonishing percentage of the people who have moved have been successful in their transition to the community, nor in your citation of 32 who have died did you include cause of death, statistics about how many have died in adult homes, or statistics about death rates prior to the settlement. You include no information about psycho-social determinate of health, such as employment, education, access to adequate food, health care and social activity. Finally, you put the phrase dignity of risk into quotation marks, as if it is some made up fringe idea as opposed to one's constitutional right. As a leader in the recovery oriented mental health movement, I would be happy to discuss this more with you. Brian Hollander Immediate Past Co-President New York Association of Psychiatric Rehabilitation Services [email protected]
Barry (away from Rhode Island.)
Mental illness is a catchall phrase for things people do not understand. The mentally ill in America are the newest class of lepers. They replaced gays and blacks as the new American supervillian. Just like the gays and blacks they are far more likely to be harmed than harm another. Mentally ill means you are not human enough to deserve American civil privileges. You can have people arrested by police for vague references to mental illness. Mental illness is not a disease. Schizophrenia is a disease. The most treated mental illness is depression and depression is not a disease. Depressed people have a better understanding of their environment and circumstances than those not suffering from this so called illness. America does not support or protect basic human rights for its citizens. That is THE disease and the historical cure is to overthrow and destroy the government, not attack citizens.
Ida (Storrs CT)
@Barry I call depression a dis-ease and have been dis-eased since I was 18; now, I'm 92. In this past year, I finished working through to an understanding of why I have been dis-eased such that my days are easier. That may not be true for all the lives my dis-ease has affected. Never hospitalized, always with adequate $$$$$ and beloved, my life appeared normal. Having read this article and the responses from my safer place, I ask the NYT and PBS and 'YOU' to follow this terrible problem with the understanding that each of us, whether sane or in-, is unique first, before becoming members of any group. And all of us need to decide which is more important: life or safety. Our time is focused on safety, which is OK except that it is safety of property guns first. There is always $$$$$$$$$$ for military defense of property and those who won't live without guns. But I rant and I think you must get it by now ... L&B&LL Love & Blessing & Laughter Laughter
Renee Hoewing (Illinois)
Will the pendulum ever come to a rest in the middle?
Mike (Florida)
As the parent of someone who is in the system of care mentioned in the article, I feel I have to say that even with the problems outined and discussed, the system works relatively well for a vast majority of people suffering from disabilities due to mental health, especially when compared to states that have no systems in place like this. We might also remember that so called "normal" people also screw their lives up, so I wonder what the comparable percentages are? I think the slightly of self righteous tone of the article does not help nor take into account how much HAS been done, how much devotion there has been, to try to accommodate all the issues surrounding the care for the mentally ill. I don't disagree with the exploration of the problems that exist, but they are an organic part of the larger experiment, on how to find the balance between indiviual rights and caring for those who are often incapable of knowing or being consitent with, what is good for them. In my opinion, having understood the problems first hand, the great State of New York has some of the best systems in place for the mentally ill, even if imperfect. In this regard I think it also might have been constructive to make comparisons to states and which do not have such systems in place, especially if the purpose and intent is to bring exposure to the most egregious problems in the care of the mentally ill.
Ida (Storrs CT)
@Mike Let's hope the NYT and PBS pursue this. I would add that they might have headlined the higher proportions of success. A 'good job' has been done for many individual men and women and children and their families. It might be better to bask in that approval before going on to work for those we have failed. I'm thinking of the ways we encourage children to continue to keep trying: not by punishing or minimizing accomplishment. And not with false praise. We encourage progress by praising achievement and proudly trying to continue to do even better. L&B&LL
Ida (Storrs CT)
@Mike Let's hope the NYT and PBS pursue this. I would add that they might have headlined the higher proportions of success. A 'good job' has been done for many individual men and women and children and their families. It might be better to bask in that approval before going on to work for those we have failed. I'm thinking of the ways we encourage children to continue to keep trying: not by punishing or minimizing accomplishment. And not with false praise. We encourage progress by praising achievement and proudly trying to continue to do even better. Let's acknowledge that it's $$$$$$$$$$$ that make this happen. To misquote, "Yes, absolutely - new taxes!" L&B&LLL L&B&LL
JB (New York)
The NY system is broken. while many individuals with mental illness are helped, the 10% who are running the streets, off medication, going through revolving hospital doors, with public funding that can not pay subsidized rent, or can not pay the salaries for employees are all ignored by NYS OMH and DOH. We forgot about the rights of citizens who pay high taxes in NY city and have to deal with homeless mentally ill daily, sleeping at doorways and on the streets. Our young children are frightened to walk on their own. And yet we continue to redesign our medicaid system, reduce funding and eliminating the public safety net for our mentally ill. The number of long term psychiatric beds for the mentally ill is almost non existence. We emphasize human rights of the mentally ill but ignore the rights of the many citizens who are being harassed , assaulted and at times pushed into the subway tracks. The article is only the tip of the iceberg of the failure of officials and advocates to protect the silent majority.
Louise Phillips (NY)
I remember when the civil liberty activists decided that institutional care for the severely mentally ill was cruel and inhuman. Giving people who are not sane the freedom to harm themselves and others has created a social nightmare for everyone. We need some brave judges and lawmakers to insist that sick people receive the treatment they need, especially when their illness incapacitates them from distinguishing reality from delusion. There aren't enough caseworkers in the world to follow people around and monitor their behavior. In these cases "independent" living is a crime against their humanity because they are dependent on many for their survival and should not be made into failed social experiments by misguided activists.
Anne (Portland)
@Louise Phillips: To be fair, much of "institutional care for the severely mentally ill *was* cruel and inhuman." People were sterilized, over-medicated to make them docile, strapped to beds, and so forth. There needs to be a middle ground between forced institutional care and total freedom.
NMV (Arizona)
Mental illness is a physiological-based disorder (neurotransmitter imbalance) as is any other medical illness or injury, but it is not as easily diagnosed and monitored for appropriate interventions and treatment, as other medical disorders are, for example, hypertension. Exacerbation of many mental illnesses due to medication non-compliance may result in the afflicted person causing self-harm or harm to others, as revealed in the article. As a nursing school educator who accompanies students to in-patient mental health facilities, I am perplexed as to why more implantable medications and ones with less side effects that are irritating (sedation, dry mouth, etc.) have not been developed to promote long-term positive effect and compliance? Is it because medicating the vulnerable population of severely mentally ill people does not matter as much as medicating people with more "acceptable" medical disorders, that we do not stigmatize or fear, and pharmaceutical companies earn outrageous profits "controlling"?
Charlotte (Florence, MA)
@NMV I agree with you! Canada, Audtralia, Europe, Enlgand and India(I don’t know how many others might) all use amisulpride. I often talk about it here until I’m blue in the face! On a low doasge using it off-label. So Grateful!
Some with severe mental illness can function without the institutional or adult home support but still need weekly visits from social workers, and administration of their finances and oversight of the medical care. Without this oversight, the outcomes may be worse even with the best intentions of the 2014 settlement. Compliance with a medication regiment that may include anti-psychotic medications as well as other intensive medical needs for diabetes, heart disease, dementia, or other illnesses. Even with the best care, the patients may have cycles of good functioning followed by steep declines. It is aspirational to live independently but for many it is not a realistic one, and one-size solution does not fit all in those situations.
jamzo (philadelphia)
where has pro publica and frontline been? SMI people in the United States are poorly supported by the public there a many human interest stories available for them to highlight stories that might encourage support for improving support of SMI people a glass half empty profile of a purposeful program addressing an aspect of support for SMI people doesn't help mobilize concern and improve care
PeppaD (Los Angeles)
@jamzo What is SMI?
david (mt. tremper, ny)
seriously mentally ill
Katrin (Wisconsin)
@PeppaD Severely Mentally Ill SMI
Hugh Massengill (Eugene Oregon)
There is a reason the courts have told mental health programs to stop treating traumatized and disordered people like prisoners, and that reason is they finally heard from those of us who identify as psychiatric survivors. We were tossed into state hospitals and drugged with very dangerous and addicting drugs, told we were defective, never given any chance to recover (by giving us the long, and expensive talk therapy that could help us integrate our own trauma into our lives), and ignored the fact that we die 20-30 years before our peers. I was lucky, being a Vietnam Veteran, I found a Vets Program that gave me that therapy. Once a person has found a way to survive by going deep into his/her brain and creating fantasy friends and lives, that person is often lost to the future. Do a complete history of even ten percent of those struggling, and you will see, not mental illness, but a battered and shattered human deserving of help. Crime is about trauma and involves a person who can relate to people, "mental illness" is about trauma so bad one cannot relate to anyone. So, yes, independence is necessary, and also case workers and group living are sometimes necessary. Throw out the baby with the bathwater, and big Pharma will dance for joy, as they get to once again drug 10% of the American people who would have to live in institutions. Hugh Massengill
Anne (Massachusetts)
Dear @Hugh Massengill , You are so right!
My brother is a person that has schizophrenia. I don't say the term "schizophrenic" because it's dehumanizing. The person you wrote about, Abraham Clemente, has schizophrenia. Small difference in wording, but it helps the reader understand that he's a person first, and not just a "schizophrenic".
Mimi (Baltimore, MD)
@MC That should be the least of your worries. Being "dehumanized" is not the obstacle that those with mental illnesses need help to overcome. Living safely and being treated as well as possible with medications and human contact is the goal. That should be your worry.
@Mimi Respectfully-- I fully realize there are a lot of obstacles that people with mental illness need help to overcome. I have loved and lived with a brother that has schizophrenia for most of my life. I also agree that living safely and being treated with dignity are very important. I'd also appreciate it if you didn't try to prioritize what I should be concerned about. To me it is important that people with schizophrenia not be referred to as "schizophrenics". I think the authors of this article agree with me, as they changed their wording after my initial comment -- thank you to you both for doing that.
Kirsten Danis (New York)
@MC Thanks for mentioning this. We changed the language. Best, Kirsten Danis Deputy Metro Editor, Investigations
jcs (nj)
Reagan closed the majority of state run hospitals without any structure in place to support the patients. The reality is that severely mentally ill patients need medication. Most resist taking their meds regularly due to their own symptoms and due to the side effects of the meds. In a hospital setting, these patients take their meds and are stabilized . They then can function within the structure of the hospital and the enforced schedule of medications. Decision making and the stress of it are removed in such a setting and patients are very capable and steady under such a regimen. This is seen as an ability to do the same thing in an independent living situation. It's not true in so many cases. The stress of making the thousands of daily decisions exhausts the abilities of the patient. They don't take their medications and the long slide to decline is started. A ten minute monthly visit with a psychiatrist (or a charitable foundations less qualified worker) is all that happens. The patients are left to deteriorate while the system congratulates itself for its open-mindedness and anti-hospital bias. Meanwhile finding a psychiatrist that take insurance for those in the community who could continue to work and live in the community is an often impossible task. They are left to pay hundreds out of pocket or to not get proper medication and treatment at all.
Sean (Reston, Virginia)
Approximately 10% (24/300) are having serious to deadly consequences of the move to independent living. The other 90% have at least decent outcomes, if not good to excellent. The article does a great job at exposing the issues with the program but the tone seems to convey that the program is a failure. Really it seems the program needs better identification of the 10%, rather than a vilification of the entire strategy.
FlipFlop (Cascadia)
That 10% number was provided by the higher-ups, who have a vested interest in making the program look good. The story said the actual front-line workers state that up to half of their clients are not capable of living independently.
November-Rose-59 (Delaware)
We've utterly failed the mentally ill overall, and I think It began with the mass closure of psychiatric hospitals due to the negative connotations of the old 'insane asylums' referred to as 'snake pits' where staff and administrators knew nothing about treatment, used strait jackets to keep them in check, and confined patients to padded cells. We have sufficient medical technologies and medications today to help stabilize troubled minds, but what's needed are facilities with experienced, sensitive staff to care for those too fearful and incapable of assimilating into society. Pushing them out on their own before they're ready and calling it "freedom" is not a good thing, nor is it more humane.
Jenny (Connecticut)
@November-Rose-59 - As with all medical needs in the United States, the economics of mental health is the "third leg" of the stool. You wrote about the existence of "medical technologies and medications" and there "are facilities and experienced, sensitive staff", but paying for this care and access is beyond a lot of people's means. So, not only is there a short supply of suitable care, but ways to pay for it are wanting. As I read this article, I not only thought about the suffering patients, but about the extent of the stress on their families which keeps them from being able to help more. I also wonder if single payer health insurance would help this catastrophe?
pkbormes (Brookline, MA)
@Jenny Most of these patients are on medicaid, so single payer health insurance for all would not make a difference.
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