“I’m afraid to die.” “What happens to my son when I die?” Treatment Advocacy Center (TAC) Executive Director Lisa Dailey says she will never forget that testimony from a Virginia mother in her 80s who had spent much of her life caring for her son, now in his 50s, with severe mental illness.
He was unstable, but she couldn’t get him into treatment because he didn’t think anything was wrong with him.
“The difference between a person with a heart attack and a person who has psychosis is that a person with a heart attack is willing to receive care, and they want the care,“ Ms. Dailey told The Epoch Times. ”The person in psychosis might be actively fighting against it. They might have to be tied down to receive care, and that is perceived differently by the medical system.
“There doesn’t seem to be a full acknowledgment on the part of the medical system that a person who is refusing care may not have the capacity to be refusing care.”
The Treatment Advocacy Center is a national nonprofit dedicated to eliminating barriers to the treatment of mental illness. In the United States, 8.8 million people—roughly the size of the population of New York City—suffer from severe mental illness, and nearly half of them go untreated in any given year, according to TAC data.
In 1963, President John F. Kennedy signed the Community Mental Health Act, which was supposed to decrease the number of institutionalized individuals in psychiatric hospitals by creating local mental health care centers. The local centers weren’t funded; most were never built. But many psychiatric hospitals closed anyway.
Since 1955, when the United States had its most psychiatric beds, the number of state hospital beds had fallen by 97 percent by 2016, according to TAC. That’s left few beds for people in need of care.
No Meaningful Support
Today, there isn’t a clear path for those with severe mental illness. Care is left to family members, for those who have someone able to help. Others often end up alone, homeless, or in prison as they try to find their way while living with a thought disorder.Each year, 21 percent of total law enforcement staff time is used to respond to and transport individuals with mental illness. For example, in 2020, the family of a Lancaster, Pennsylvania, man called the police to remove a loved one from their home during a mental health episode. Ricardo Miguel Munoz, 27, was holding a knife to his neck when the police arrived. Mr. Munoz charged at an officer and was about to stab the officer, a police body camera recording shows, when the officer fatally shot him.
Mr. Munoz had been awaiting a court date on an alleged previous stabbing of four people and had a stalking incident in his history. His family said in news reports that they wanted mental health help for him.
“Our entire medical system for people with severe mental illness is predicated on the idea that family is responsible for providing the majority of the care, in their homes, at their own expense, without any support, and without any of the tools they would need to be able to make that actually work,” Ms. Dailey said.
Severe mental illness involves psychosis, or a patient losing touch with reality. Often, these are people with schizophrenia or bipolar disorder. While in psychosis, the behavior is unpredictable and sometimes dangerous. They may walk out into traffic, fear others are trying to harm them, or find a weapon and harm the public. About half of them have anosognosia, or lack of insight into their illness. That is, they don’t understand that they have a mental illness, refuse to take medication, and won’t go for treatment.
The laws governing mental health are different in each state, but there are some common problems nationwide, including limited psychiatric bed space in hospitals, a shortage of psychiatrists, a high bar toward getting into a hospital for treatment, and often the release of patients with a chronic mental health condition with no plan after release.
The Medicaid Institutions for Mental Disease (IMDs) Exclusion is one barrier to finding in-patient care. The IMD Exclusion prohibits states from using Medicaid to pay for care provided in psychiatric hospitals or other residential treatment facilities that have more than 16 beds.
“It’s the only kind of illness that has that, so that’s one policy thing we should get rid of,” Ms. Dailey said. “It’s totally discriminatory, and it discourages the building of facilities.”
Loved Ones Watch and Worry
While neither the details nor a specific diagnosis are publicly known, police have reported that Robert Card, the suspect in the Lewiston, Maine, fatal shootings of 18 people, had recently reported mental health issues, including hearing voices. He had threatened to shoot up the National Guard base in Saco, Maine, and during the summer, was admitted to a mental health facility for two weeks.
“I know exactly what [families of those with severe mental illness] think when they see these things,“ Ms. Dailey said. ”You’re angry at the system that discharged him after two weeks because that was your opportunity to get somebody treated and prevent something like this from happening.
“That’s what family members are always thinking about—this could happen. It is very difficult to predict what psychosis might cause a person to do. But when there is an opportunity, the medical system isn’t doing what it can to try to take that opportunity.”
A Pennsylvania mother in her 60s watching the news worries about her son, who has a severe mental illness and was recently released from the hospital but is still showing symptoms.
“Will my loved one do such a thing? I know the possibility is there,“ said the woman, whose name The Epoch Times is withholding for privacy reasons. ”We all know it. It is an uncontrollable condition caused by their mind not functioning right.”
She feels numb from fear and anger, and also a sense of helplessness every time she hears of mass killings by someone with a mental illness.
“Must this fear always be there?” she asks, adding that people wonder why the family doesn’t get them help. “It’s not there. The system doesn’t care.”
As her son’s caregiver, she said that one problem that she faces is communicating with doctors about his care. Once her son turned 14, the state considered him old enough to be able to refuse to share his medical information with his mother.
“I said, ‘But he’s not in his right mind. How can a child refuse their parents’ help when total strangers are overseeing his care?’” she said.
Now, he’s an adult, and she wants to understand what he experienced during a recent hospital stay and why he was abruptly discharged.
“Now that he’s over 18, I’m not permitted to see his medical records,” she said, noting that her son says that the papers that he came home with have the wrong treatment written, and she wants to compare those discharge papers with his hospital records.
It’s what Ms. Dailey calls the HIPPA handcuffs.
“They could release information in a lot more circumstances than they do, but they don’t have to,” she said.
“It really isn’t the language of HIPPA law that’s the problem. It’s the culture of treatment that doesn’t want to involve family members and doesn’t want to share information for whatever reason. I think the only way that you’re going to fix that is to either create a mandate or clarify overall what the role of caregivers is.”
Systemic Failure
There are systems of support involving lifetime care for people with dementia or severe autism. While a person with Down syndrome or autism spectrum disorder can live independently with support and resources, Ms. Dailey said, there’s nothing set up to coordinate care in the same way for adults who are severely mentally ill.“Our system is based on the false premise that what you need to do is wait for somebody to decide that they need treatment, and then they‘ll get treatment, and it will work, and they’ll be completely back to normal, which is not really what those illnesses are like,” she said. “Especially with very severe illnesses.
“The idea is, if you have schizophrenia and you take your medication, you can then go back to your 9-to-5 work and support yourself. That’s true for a very small percentage of people with schizophrenia. It is a very disabling disease, even if you are medicated and stable. And the resources we do provide for people who are in that circumstance are not adequate to that level of disability.”
In the rare, best-case scenario, in which someone recognizes that they have an illness that requires daily, lifelong medication, she said, the system still isn’t set up to coordinate their care by assuring that they have a place to live or that they have all of the benefits that they’re eligible for. They may need help getting a SNAP card for buying food and someone to keep up with their Medicaid paperwork and to ensure that they connect with programs that might be available.
It can be tough for anyone to navigate this paperwork, Ms. Dailey said, but we leave it up to the individual with a thought disorder to figure out what society can do to help them.
“When you look at dementia care, we have some sense of how that is supposed to work. We have nursing homes and facilities that are available for people who require a level of care for severe disability. We don’t really have anything that’s analogous for people with severe mental illnesses that are disabling, where they’re not going to be living fully independently without a lot of support.
“We have created a system where that support really only comes from voluntary help from family members, and there’s no plan for what happens for people who outlive their family members, which most of them do.”
Not enough people are advocating on behalf of those with severe mental illness, the Pennsylvania mother said.
“No one’s talking about it. No one’s doing anything about it,” she said, noting that she’s including the politicians who could move policy, the patients who don’t have the insight, and the family members who don’t have the strength and time.
Wishful Thinking
Although it can take weeks or months to see the results of psychiatric medication, patients are often discharged before they’re ready. Because there are few long-term options, the emergency room is often the first stop for a person in a mental health crisis. If there’s no place to send them for long-term care, the emergency rooms stabilize them, often with medicine that will sedate them, Ms. Dailey said, “then let them out and hope that they continue to seek treatment in the community.”The stopgap solution is families stepping in—if they exist.
“Families are terrified, limping along, doing the best that they can, absolutely furious and confused about why there isn’t something more available for them,” Ms. Dailey said.
“Very few people require institutional living on a long-term basis, and that isn’t the goal anybody should have. There’s a difference between having psychiatric hospital beds available for six months to stabilize somebody and warehousing someone in institutional care for the rest of their lives. But people talk about those things as if they’re the same.
“We plan for this like it’s a broken leg. Like you’re going to set it in a cast, it’s going to heal itself, and then that person can take care of themselves. [That’s] instead of it being more like a dementia case, or even diabetes, where you have to do certain things to maintain an illness that’s chronic and can have periods where you’re doing better and periods where you’re doing worse.”
About half of the population of people with severe mental illness are untreated because of a lack of insight into their condition, according to TAC. About 30 percent of the chronically homeless population is estimated to have severe mental illness. More than 1.8 million people with severe mental illness are booked into jails every year, and they account for 20 percent of jail and prison inmates.
These individuals are often crime victims, and as many as half of those with schizophrenia or bipolar disorder attempt suicide.
Some 29 percent of family homicides are committed by someone with severe mental illness; 7 percent of all homicides, 20 percent of all law enforcement officer fatalities, and up to 50 percent of mass homicides are associated with severe mental illness, according to TAC.
“Our policies about this, especially within the medical system, are not based on what we actually know about the trajectory of what works in an illness like this; it is based on wishful thinking,” Ms. Dailey said.
Beyond the prevention of homelessness or a criminal incident, the wish for the Pennsylvania mother is to find long-term solutions that will allow her son to live a safe, dignified life with meaning and purpose.
It’s a wish “not only for my son but for all that have to endure it.”
