A drawing representing a common trope about mental illness, showing a woman alone in a room, scribbling on the walls.

What Would True Mental Health Reform Look Like for the US?

Mental health reform in the US typically comes up in one context only: in the wake of incidents of rampage violence. Such incidents are tragic and horrific, and almost as soon as they hit the news, observers decide the person responsible must have been ‘crazy,’ absolving themselves of further exploration of the incident — crazy people ‘just do that,’ and that’s how it is.

Despite the fact that this is a rampant misconception, it’s a commonly held and supported belief, bolstered by media coverage of rampage violence and mental illness. Typically, the longtail aftermath of such incidents is to demand two things: better gun control (usually from the point of view that guns need to be kept out of the hands of mentally ill people) and better regulation of crazy people — for, surely, if mentally ill people were compelled to take medication, register with government agencies, and undergo similar indignities, they wouldn’t be prone to randomly shooting scores of innocent people. (Something the vast majority of mentally ill people actually aren’t prone to doing in the first place — to the contrary, mental illness is a very serious risk factor for being exposed to violence, and mentally ill people are usually victims, not perpetrators, of violence.)

The lack of open discussion about mental health reform is frustrating, as the United States is in urgent need of reforms to its currently outdated and woefully inadequate mental health system. Mentally ill people in the United States face significant stigma; large barriers to accessing treatment; and high rates of poverty, homelessness, unemployment, and abuse. They also have limited access to social programmes and benefits to help them access care and achieve stability in their lives.

The flaw in such programmes is obvious: it reduces mentally ill people to ‘threats’ that need to be neutralised or dealt with, rather than human beings.

Most conversations about reforms to the system take place among communities more concerned about their own interests than those of mentally ill people, and the focus is on suppressing mental illness, making it less disruptive, and sweeping it under the rug. Consequently, many reforms revolve around ideas like enacting forcible medication programs (Laura’s Law in California, for example), or requiring psychiatrists to report what should be privileged session information (as in New York in the wake of Sandy Hook). The concern with these laws is not necessarily with the patient, but with ‘the safety of the public,’ whether or not a mentally ill person actually poses a danger to society.

The flaw in such programmes is obvious: it reduces mentally ill people to ‘threats’ that need to be neutralised or dealt with, rather than human beings. In the medical model used in the United States to conceptualise mental illness, it’s also notable that mental illness is framed not as a part of a person’s identity, but as an alien force that must be wrestled with. This attitude is not condusive to accepting mentally ill people as whole people who may need assistance managing their illnesses, but don’t need to be treated like pariahs with rotting albatrosses ’round their necks.

What would true, patient-centred mental health reform look like for the United States? It would have to involve a multi-pronged approach that would include comprehensive legislation, public funding to back up such legislation, and social outreach programs to address disparities that cannot simply be written away with the stroke of the President’s signature. It’s something that could require years of work, not the quick legislative patches we’ve seen reactively passed in the past in response to gun violence.

It’s something that also requires working directly with mentally ill communities to find out what would best serve them.

Early Screening, Referral, Diagnosis, and Treatment

One of the most significant, and serious, flaws in the current US health system is that the early warning signs of mental illness are often not caught, and when they are, they are not addressed. Mental illness often manifests in the teens and early twenties, a transitional age when patients may be subject to highly turbulent life experiences. It’s important for people who work people in these age ranges, including teachers, professors, athletic coaches, and employers, to be aware of the early signs of mental illness and to have a comprehensive plan and policy in place for referring people in their care or under their supervision for help.

For physicians who work with people in these age range, similar referral policies are critical. The emergence of a mental health condition should be addressed by a mental health professional, although a patient can be helped through the transition by a trusted GP or paediatrician. The earlier a referral takes place, the better the outcome, and the more options present themselves.

Once referred, patients need to be able to receive comprehensive screening for accurate diagnostic purposes. Limitations on visits to mental health care providers instituted by insurance companies and government benefits programmes are incredibly harmful, as they pressure mental health professionals to make snap decisions without fully evaluating patients.

Treatment plans can take weeks, months, or years to perfect, and they typically involve a range of modalities, depending on the patient. Patients need economic and social support to work with their providers to develop and adhere to a treatment plan, and they also need to be respected as individuals who have a right to take a key role in the development of their treatment plan, and to refuse treatments they feel are not suited or are unnecessary.

The privacy of mental health patients must be respected, something that seems difficult for many family members and lobbyists to grasp. Private medical records should not be released without consent, and family members do not have the right to insist that information about someone’s diagnosis, illness, or course of treatment be provided for them.

Better health care outcomes tend to result when patients are assigned a case manager, a phenomenon observed across many disciplines of medicine. Mentally ill people need access to the same level of services, with a case manager to help them coordinate care across multiple providers and agencies, while also assisting them with tasks like applying for disability benefits if needed, applying for jobs and housing, and seeking other forms of public or private assistance.

The benefits to early intervention are demonstrated and multifold. Patients have better outcomes, less money is spent on crisis care, and patients are less likely to develop secondary issues related to mental illness, like drug and alcohol addiction linked to self-medication. Simply put, this is a measure that’s good for mentally ill people, bottom line — and it also happens to benefit society.

True Mental Health Parity

Under the Affordable Care Act, mental health parity laws are supposed to limit discrimination on the part of insurers when it comes to providing coverage for mentally ill people. Such laws are a critical component of ensuring that patients with insurance have access to the same level of care for mental health conditions that they do for other medical issues.

However, they do not address the larger social issue that health insurance is not health care. Not all mentally ill people will qualify for programs like Medicaid or discounts on their now Federally mandated insurance, especially in states like Texas which declined the Medicaid expansion and the additional funding it provided.

They also don’t confront another problem: psychiatrists are far less likely to accept insurance coverage than other health care providers. Even if a mentally ill person has insurance, her preferred provider may not accept it, and no law compels psychiatrists to do so. Mental health professionals have become even less likely to take insurance in the last decade, in part because they were so used to having claims rejected that the cost of processing them far outweighed the benefits of accepting insurance.

While parity laws may help address this imbalance, encouraging mental health professionals to start taking insurance again or for the first time, this will likely be a slow conversion process. Mentally ill people who need to access treatment may not be able to get it from the providers they want to see.

Mental health care is a particularly sensitive, vulnerable area of medicine. When seeking a therapist, finding a provider is about much more than looking up a name in an insurer’s directory. It may require meeting several therapists, listening to word of mouth recommendations, and potentially working with multiple people before finding one who works.

The wrong therapist can be damaging to a patient’s progress in treatment, in addition to frustrating to work with, and a mismatch between therapist and patient can be disastrous. Thus, it’s critical for patients to have unfettered access to a full spectrum of mental health professionals, and not to be limited by an insurance plan or by refusal to accept insurance on the part of providers — mental health care is expensive and therapy can easily run into the thousands per month, especially for the intensive therapy some people find helpful at the onset of mental illness or throughout their lives.

True mental health parity means expanding access to providers so mentally ill people can exercise very deliberate, thoughtful, and well-researched choice when it comes to who they work with.

Effective Stigma-Fighting Initiatives

The above are only one aspect of improving the quality of life for mentally ill people in the US. They’re empty without an effective mechanism for fighting stigma about mental health conditions.

Stigma pushes people to avoid treatment or limit the options they use for fear of being outed as mentally ill, or because they experience social pressure. For example, the popular belief that using medications is a sign of ‘weakness’ leads many people to not use them or to go off them, which may not necessarily be the best choice for their health. The converse belief that all mentally ill people should be ‘controlled’ by being on medication pressures people for whom medications do not work, along with those who have chosen not to use medications, to take drugs that aren’t suited to them.

Without being safe in society, mentally ill people have no reason to trust or respond to reform.

Stigma also leads to unemployment and discrimination in the workplace, where mentally ill people are treated unjustly. Some government agencies and private companies actually openly discriminate against mentally ill people, excluding them from hiring on the grounds that they pose a threat to safety and security. Such policies don’t just result in closing jobs to mentally ill people — they also mean that mentally ill people working in such industries must be closeted, which discourages them from seeking help when they need assistance with managing their illnesses effectively. This poses a far greater danger to safety and security than simply openly hiring mentally ill people in the first place, but this remains unacknowledged in the discussion of agency policies.

Stigma is also what drives government agencies to take children from mentally ill parents, what pushes people with mental illness to remain silent rather than reaching out, what motivates the persecution of mentally ill people in the media and in pop culture.

It is not something that can be easily turned back, but the tide of stigma does need to be addressed for any hope at comprehensive and effective mental health reform. Without being safe in society, mentally ill people have no reason to trust or respond to reform. It’s clear that many members of the public would benefit from educational outreach programs about what mental illness is, how it works, and what it isn’t — for example, clear, detailed breakdowns on statistics about mental illness and violence are obviously direly needed in widespread circulation, as many people are unaware of them.

Comprehensive Access to Varied Treatment Modalities

Mental illness is highly variable; the same diagnosis can manifest radically differently in two people. That means that effective treatment is not one-size-fits-all, and that universal attempts at management of mental health conditions are not effective. Instead, it’s important for patients to have access to a range of options, for them to choose which options they want to use or abstain from, and for them to retain absolute power over the course of their medical treatment.

We must change both the framing of mental illness and the framing of treatment to make it expressly clear that patients play an active role in their diagnosis and treatment at all times.

Some members of the mentally ill community embrace mad pride, rejecting the idea that something about them needs to be ‘cured’ or ‘managed,’ and their needs need to be respected alongside those who want to pursue treatment. Likewise, victims of psychiatrisation need to have voices in any discussion about treatment modalities and the treatment of mentally ill people.

Since psychiatrisation tends to target people of colour and women particularly hard, the specific concerns of these two groups need to be balanced with extreme care when discussing treatment modalities and health care reform. Resistance to oppression is often pathologised, and outdated beliefs about certain mental illnesses (such as schizophrenia, which has a suspiciously high diagnosis rate in the Black community that some scholars note may be the result of racism, not an epidemic of mental illness) need to be reassessed and reevaluated.

We must change both the framing of mental illness and the framing of treatment to make it expressly clear that patients play an active role in their diagnosis and treatment at all times. Patients also have the right to choose the modalities incorporated into their care, as they are the ones receiving their care.

Whether and how they choose to pursue therapy, medications, and other options, mentally ill people need to be supported in their choices as they balance their needs, desires, and life experiences. Mentally ill people are not objects to be managed, but human beings, and their choices do not have to agree with society’s at large, let alone family members or other people’s, to be valid.

Community-Based Supports

Focused community support for mentally ill people involves a combination of effective stigma fighting, savvy use of caseworkers and outreach personnel, and community education. Mentally ill people live, work, play, and interact with communities all over the United States and they should be able to do so freely, without fear of persecution, attack, harassment, or profiling.

Within communities, caseworkers and mental health professionals can be providing assistance to mentally ill people who need help finding resources that may help them manage their lives effectively. These same professionals can also be performing education and outreach for community members to provide unbiased, accurate, and informative briefings on mental illness and its role in the community. Employers, for example, need to learn not just about antidiscrimination laws, but also about working with mentally ill people and the fact that mentally ill people are perfectly capable of holding jobs, handling promotions, and maintaining a functional work environment. Law enforcement officers, meanwhile, need specialised training in working with mentally ill people in order to avoid the all-too-frequent tragedies seen today where people are shot and killed simply for being mentally ill — and, all too often, for being mentally ill while also being young men of colour.

Meanwhile, funding needs to be provided so that family members and loved ones are not primary caregivers for mentally ill people who need support to live in the community. Such jobs should be taken by choice, not by situation, and caregivers should be provided with fair compensation, reasonable working hours, and safe working conditions. Given that many people working as aides and personal assistants to disabled people, including mentally ill people, are people of colour, this is an illustration of the critical need to address racial inequalities in labour rights, particularly for domestic workers.

Mentally ill people need to be welcomed and supported in their communities for who they are, not for who people want them to be. Like other disabled people, they have a Supreme Court-mandated right to be in the community, and communities must accept this fact and stop behaving in a discriminatory fashion towards mentally ill people.

Mental Health Crisis Teams

Even with comprehensive reforms aimed at preventing mental health crises by connecting mentally ill people with services early and providing them with consistent support, such crises are still going to be an inevitable part of life. In an ideal world, no one would ‘slip through the cracks,’ but it’s highly likely some people would, developing untreated mental illness that becomes severe. Others might experience a sudden onset of mental illness, an episode related to situational, environmental, or other factors,  or another mental health event that requires rapid intervention.

The current method for dealing with people experiencing mental health crisis is typically to route them through emergency rooms and from there into mental health wards, if they have the space. This can involve an experience that is frightening, confusing, and disrupting for the patient, and in addition, it puts  mentally ill people in environments with people who are not trained to deal with mental health crises, as there are very few dedicated mental health emergency rooms.

In some cases, patients reach services directly, usually if they have an established relationship with a care provider and a support network to help them get care — something primarily available to those with social power. On the opposite end of the spectrum, friends and family may call 911 for an ambulance, hoping for medical aid with a loved one in crisis, only to be met by a squad of police officers. Such incidents often end in tragedy, as police officers are not trained to handle such situations, even though they’re dispatched to handle mental health emergencies on a routine basis, thanks to poor funding, lack of mental health services, and the requirement to send backup with ambulance crews responding to situations that may potentially be dangerous.

As an alternative to this current patchwork system, dedicated mental health crisis teams consisting of experienced care providers, trained law enforcement when necessary, and trained social workers should be dispatched to handle mental health crises. Such teams should also be available at hospitals to quickly route patients showing signs of mental illness into appropriate care, rather than forcing such patients to wait in a traumatising emergency room setting.

When mentally ill people do encounter law enforcement, programmes like this one in Portland are designed to ensure a different outcome than the typical. They focus on training police in mental health intervention and peaceful resolution of situations, rather than on ‘neutralising’ mentally ill people. Seattle’s mental health diversion centre is another example of an alternative to traditional approaches to dealing with mentally ill people in trouble with the law.

The bottom line with effective mental health reform in the US is that it needs to be patient centred, and from there, extended to the larger community. Anything that doesn’t put the wellbeing of patients first is a red herring, something that ultimately won’t benefit mentally ill people or the community.