Housing First programs prioritize highly vulnerable people with a serious mental illness who are coming out of extremely stressful circumstances. Considering these factors, it's expected that case managers will encounter some participants who experience psychosis. Psychosis refers to the presence of psychiatric symptoms involving a loss of contact with reality. These symptoms are the defining features of schizophrenia-spectrum disorders. But, these symptoms can be present for other reasons including: a mood disorder (most commonly bipolar disorder but also depression); substance use (e.g. hallucinogens or alcohol withdrawal); a physiological condition (e.g. head injury or migraines): or even just extreme deprivation caused by a lack of sleep, food, or water. Symptoms of psychosis include delusions, hallucinations, disorganized thoughts or behaviors including becoming catatonic, and negative symptoms (decreased motivation, limited emotional expressions, and decreased interest in pleasurable activities or social interaction).
It’s important to distinguish between delusions and hallucinations. Delusions are fixed false beliefs that may include the belief that a person has special powers (grandiose) or that someone is controlling or inserting thoughts into someone’s mind. Sometimes it can be hard to identify whether something is delusional because there may be degrees of truth. For instance, people may experience persecutory delusions (a belief that they are going to be harmed or harassed). In reality, many people we work with regularly encounter harassment and abuse related to their mental illness, lack of money, housing status, race, gender identity, or sexual orientation. Hallucinations are sensory experiences that occur without an external stimulus or outside input. A person may hear, see, smell, taste, or feel something that isn’t actually there. They may appear to be listening and responding to voices without anyone in view talking to them. Visual hallucinations tend to involve scenes with family members or animals (bugs crawling on your arm), seeing shadows, or visual distortion. To get an idea of what it’s like to experience auditory hallucinations check out this video and for an example of what visual distortion can feel like look at motion aftereffect illusions. Imagine how difficult these experiences can make going about your daily life.
Experiencing psychosis can be distressing and even harmful, regardless of the type and cause. Psychosis is associated with an increased risk of depression and suicide, impaired functioning in school or employment, and strained relationships resulting in a loss of supports. Symptoms of psychosis usually begin when people are between the ages of 16-30. Early intervention is important because the duration and severity of a psychotic episode can increase the likelihood of additional episodes and poor outcomes in the future. Coordinated Specialty Care (CSC) is a treatment program specifically developed to support people experiencing their first psychotic episode. CSC providers develop a personalized treatment plans that can incorporate medication, therapy, case management, education or employment, and family support to address a manage psychosis.
Because of the risks associated with psychosis, case managers and other helpers can use a harm reduction approach to support people. As with substance use, the focus should be on reducing the negative consequences of psychosis. Case managers should help participants learn to manage psychotic symptoms in a way that reduces their impact, instead of emphasizing the elimination of symptoms. The presence of psychosis does not have an inevitable result. It does not mean that a person can’t maintain housing and independence. As Sam Tsemberis, CEO and Founder of Pathways to Housing, explained in the @Home documentary segment on Housing First, “People have a functional ability and it’s quite separate from their diagnosis. You can believe that the government is after you or that there are people flying in from outer space and they’re going to take over the planet. And, leaving all that aside, you can still go get a ham and cheese sandwich and some French fries, have a meal, or go shopping.” Understanding that people who experience psychosis can and do successfully stay housed is essential for effectively using the Housing First Model. Below, are some things to keep in mind to support people experiencing psychosis.
people who experience psychosis can and do successfully stay housed...
Begin by assessing for safety. People with psychosis are at an increased risk of suicide. If a case manager thinks a person is at risk of hurting themselves, they should be direct and open about the topic. A case manager should try to figure out if the person has a specific plan, previously attempted suicide, and the likelihood that they will act on their suicidal thoughts. The risk of violence to others is also a possibility. However, it’s important to point out that people with a mental illness are not more likely to commit violent acts. Instead, they are over 10 times more likely to be the victims of violent crime than the general population. If there is a clear threat, consider assisting the participant with hospitalization or safety planning and contracting.
Don’t argue with psychosis. The nature of delusions is that they are fixed beliefs and unlikely to change based on conflicting evidence. Arguing with people about the validity of their idea will only encourage them to dig in their heels, find faults in your logic, and possibly even refuse to continue working with you. As with all harm reduction work, the quality of the relationship is essential. Case managers should align themselves with their participants and avoid being confrontational. Even casual statements like, “Don’t be silly” or “Get it together” can be dismissive and isolating. Remember that whatever they are experiencing is real to them and genuinely affects them. Help people explore their symptoms and speak in a calm, clear, and concise way. Don’t pretend to hear what the person hears or share in a false belief. Without feeding into a delusional thought, we can still identify with the feelings it creates in a person. For instance, a case manager might say, “It’s really scary to feel like you’re constantly being watched by others. That takes a lot of strength and courage. How do you manage to get through your day despite that?”
Help develop a list of options that can include personal coping strategies and professional support from a psychiatrist, therapist, or case management team. As we mentioned in a previous post, a participant has a right to choose whether or not to take medication. Although medication is considered a go-to response for the treatment of psychotic symptoms, there is some research showing that people may benefit from managing psychosis without medication. A recent study compared people with schizophrenia who were being treated with antipsychotic medications and those who were not. The study showed similar levels of symptoms but higher levels of general functioning among people not taking medication. Although medication may be most effective for some, we should explore strategies beyond medication with all of our participants to help them cope with psychosis. Don’t assume that someone needs medication in order to be successful in housing. At a recent training, one attendee mentioned a participant who was homeless for 25 years prior to being housed in their program, does not take medication, and maintains the cleanest apartment of anyone on their caseload!
Respect people’s right to use drugs. People may use illegal drugs or alcohol to self-medicate the symptoms of psychosis. For example, participants have reported using depressants like alcohol, heroin, or other opioid pain relievers to drown out voices and help them sleep. There might be therapeutic benefits to other substances as well. As researcher and journalist Helen Redmond explains, “Nicotine may even have specific properties that ‘treat’ symptoms of schizophrenia.” Consider the capacity for nicotine to improve mood, memory, and concentration and how that may balance the impact of psychosis. In a harm reduction program, helpers should never remove a helpful coping mechanism before finding substitutes. With substance use or psychosis the course of treatment is the same—to nonjudgmentally help people explore and understand the function, the potential consequences, and the alternative ways to manage it.
Some additional resources for information on psychosis include Mental Health First Aid, the National Alliance on Mental Illness (NAMI), and the Hearing Voices Movement.
Mental illness is prevalent in the population served by Housing First programs. But, the stability of housing puts people in a better position to improve their mental health and avoid the most harmful consequences of having a mental illness like hospitalization or suicidality. Harm reduction is a critical ingredient of the Housing First Model and can be used to work with participants around all potentially risky behaviors, including managing the symptoms of a mental illness. Service providers can use a harm reduction approach to proactively engage with people about the symptoms they experience and the tools they have already developed to manage them.
As we discussed in our previous post, people with a mental illness may not want to use psychotropic medication or take it as prescribed. In addition, the benefits of medication are enhanced by other therapeutic supports. For these reasons, it’s important to seek strategies beyond medication that promote mental health. A case manager’s goals should include assisting participants with learning about their mental illness and the potential risks, developing a menu of ways to address their symptoms, selecting the strategies they believe are most realistic or effective, and evaluating how their plan is working out. Below, are a few simple considerations for building a toolkit of options for people with a mental illness. Please feel free to submit a comment with your other creative approaches and ideas!
Diet, Exercise, Sleep
Most people are aware of the impact that diet, exercise, and sleep have on our physical health. All of these can significantly impact our mental health as well. Starting off with an exploration of these basic needs is one way to address mental health. If someone doesn’t get enough sleep, the results are predictable—low energy, irritability, and a lack of focus to name a few. These effects are exacerbated by the presence of a mental illness. Although people are quick to jump to medication as a solution to sleep problems, there are other alternatives. Good sleep hygiene can include having a regular routine (e.g. regular bedtime before 11 pm or wearing specific clothes to sleep in), allowing time to wind-down, using relaxation techniques, and reducing exposure to light and noise from electronic devices.
Regular exercise also contributes to better mental health. Simple forms of exercise like walking, stretching, or calisthenics (push-ups, jumping jacks) can improve our sleep routine and reduce stress. I worked with one participant diagnosed with Bipolar Disorder who chose not to take medication. Instead, he rode his bike everywhere and by the end of the day was so exhausted that he didn’t struggle to get to sleep. Exercise generally promotes better mental health by releasing endorphins that reduce depression and improve memory, concentration, and other mental tasks. It is important to start slow and consider a person’s ability since many participants in Housing First programs have physical limitations.
There’s a reason case managers check the fridge on home visits and ensure that participants have adequate access to food resources. Our diet can also affect our sleep routine and overall mood. Eating sugary products or drinking caffeine too close to bedtime can make it hard to fall asleep or sleep soundly. Besides impacting sleep, diet alone can affect our mood. People report having a better mood when they regularly drink water and eat a variety of fruits and vegetables, as well as other foods high in fiber or magnesium. On the other hand, diets that are high in saturated fats and calories lead to depression. Diet, exercise, and sleep are connected and can improve mental health through awareness and proper attention to them.
A Network of Support
People need connection. In their article “Applying addiction harm reduction lessons to mental healthcare” Krausz et al. explain, “strong evidence shows that for a successful recovery, long-term support, stable relationships and the involvement of peers and family members is critical.” Case managers in Housing First programs are often the primary stable, supportive relationship in a participant’s life. This relationship is uniquely safe and consistent because case managers in Housing First programs will not abandon a person because they had a bad day or got evicted from their apartment. The work of building a supportive network begins with case managers and grows from there.
Case managers can help build a participant’s network of support by linking them to the professional help of therapists, psychiatrists, nutritionists, and other service providers. They can also help a participant find peer supports by making connections with other people who have lived experience with aspects of their own life. Some Housing First programs do this by offering outings like picnics or movie nights for participants to connect with other people in their own program. Case managers might also work with participants to help them reconnect with family members. Relationships promote recovery by fostering connection and making assistance available when people are struggling to cope with their mental illness.
Moving into supportive housing enables participants to get out of survival mode. With their basic needs met and social connections established, people can eventually pursue higher level needs like the desire for purpose. Some participants achieve this by going back to work. But, even those who are not capable of returning to employment can be encouraged to find other meaningful and satisfying pursuits. Participants may pursue volunteer opportunities in shelters, food pantries, or other service organizations that they previously went to for help. Other Housing First participants have decided to volunteer at local farmers markets, community organizing groups, or animal protection agencies. Pursuing an interest or hobby such as writing or art making can bridge the need for a social network and meaningful activities. Many resourceful case managers have helped participants explore their interests and connect to broader social networks by providing access to computers and the internet. Resources like Meetup allow participants to search for people with similar interests and join local groups that aren’t necessarily focused on a shared experience of mental illness.
Logotherapy is one approach to improving mental health that emphasizes finding purpose and meaning in people’s lives. As Victor Frankl explains in Man’s Search for Meaning: An Introduction to Logotherapy, “What [a hu]man actually needs is not a tensionless state but rather the striving and struggling for a worthwhile goal, a freely chosen task.” This idea parallels the harm reduction approach. Instead of focusing on the absence of all symptoms or problems, self-worth is achieved through a commitment to a process of positive change. As with all aspects of harm reduction, it is important to explore options with participants and help them choose the ones that are most meaningful and accessible to them.
In our country, mental health treatment increasingly emphasizes the use of psychotropic medications. As we’ve searched for the magic bullet for these complex conditions, we’ve moved away from other forms of support, like psychotherapy. This shift has occurred despite evidence that medication is most effective when it is coupled with therapy. From the outsider’s perspective, the solution to someone’s mental health problems can appear simple: “Just take your meds”. Too often, we believe that medicine is completely safe and effective because it was prescribed by a doctor. This can be a dangerous assumption. Psychotropic medications are drugs—they can positively affect a person’s mood or state of mind but they also have the capacity to harm. Providers can use a harm reduction approach to engaging with participants about psychotropic medications to ensure that they are used in the most beneficial way possible.
Our participants have the right to choose whether or not they use psychotropic medications. We should acknowledge their experience and autonomy. Nobody is better equipped to describe the effects, good or bad, of a medication than they are. Just like the decision to use drugs must be respected, sometimes our participants will decide that their best option is to not use psychotropic medication altogether.
A harm reduction approach to psychotropic medication means it is not framed as a requirement for mental health treatment and recovery. Instead, medication is presented as an option to be considered. The job of a case manager is to help participants make an informed choice. Participants have legitimate reasons not to use psychotropic medications, often based on previous negative experiences. We should ask about these reasons and take them seriously, refraining from judgement. Harm reduction workers provide space for participants to discuss how their choices are working out and regularly engage with them about the risks and benefits of their choices. But, these conversations can be challenging. This article offers some information and resources to help guide you. The two issues we’ll focus on are medication adherence (i.e., the extent to which people follow a health care provider’s advice about a medication and how to use it) and how to come off of psychotropic medications.
Non-adherence, or not taking medicine as prescribed, can be risky. Research links non-adherence to psychotropic medication with poor outcomes like hospital admissions and suicide. However, non-adherence is not unique to people with a mental illness. Rates of non-adherence to psychotropic medication are comparable to those for physical medications. A lot of things can factor into whether or not a person takes medication as prescribed: the information or understanding the person has about the medication; the degree of improvement or side effects they experience; their ability to afford the cost of the medication; their ability to remember to take the medication or refill their prescription when needed; and the approach of the health care provider prescribing it to name a few. Exploring the barriers to adherence can help them identify strategies to overcome them.
Some effective options to improve adherence include the use of long-acting injections of antipsychotic medications or medication monitoring through community support. However, a relapse of mental health symptoms is still possible while remaining adherent. So, we should talk to participants about their medications and how they are working for them. Even if a medication has been useful in the past, it’s important for participants to continue regular follow up with the prescribing provider to keep an eye out for unwanted side effects. Rxisk is a website dedicated to making medications safer by educating people about the risks and side effects associated with them. Among other resources, it provides a checklist of questions for patients to ask providers about the medication they are prescribing. Case managers should also research and be aware of potential side effects of the medications that the people they work with are taking, so that they can educate, monitor, and check in with them regularly.
When participants choose to stop taking psychotropic medication, case managers should aim to be involved in the conversation and encourage people to involve their psychiatrist in the process as well. The potential for withdrawal with many medications is real. As with other drugs, like heroin or alcohol, our bodies can get used to the presence of certain chemicals which makes it difficult to adjust when they are no longer there. Sometimes the symptoms of withdrawal (e.g. anxiety or sleep problems) can mirror the symptoms of a mental illness or exacerbate them. Remember that even when withdrawal symptoms are present, it is possible to successfully come off of psychiatric medication altogether. For an in-depth guide on this process, check out the Harm Reduction Guide to Coming Off Psychiatric Drugs and Withdrawal from the Icarus Project and Freedom Center. In general, tapering off of these medications is safer. A guiding principle to keep in mind is that the longer someone has taken a medication, the longer it will take to safely get off of it. As with taking medication, the process of coming off of them is one that we should engage with our participants about to review their progress and help them revise their plan as needed.
Medication can help or hurt people’s efforts to manage their mental health. Open-minded conversations about the pros and cons of using psychotropic medications encourage honesty from our participants about their level of adherence to a medication or their ultimate desire to stop using it. In a future blog post, we’ll address other strategies for managing mental health. With or without medication, recovery is possible.