Minnesota eroded an effective model for helping folks with serious mental illness

Among our mental health system’s greatest challenges is meeting the needs of people with serious and complex mental illnesses. These are Minnesotans who have experienced lengthy and multiple hospitalizations, incarceration, homelessness and long stays in our state institutions. 

In 2013, a building opened in Minneapolis that was designed with these people in mind. With great intention, designers paid attention to details like natural light, the color of the walls and the design of the hallways. There’s space for yoga and exercising, communal dining for those who want it, and spaces in the hallways for people to gather. 

Touchstone, an innovative mental health provider, reached out to advocacy organizations and the state Department of Human Services to ensure that they did not create an institutional setting that segregated people with mental illnesses and prevented them from engaging with the community. 

It’s called Rising Cedar. Touchstone is the onsite service provider, while Project for Pride in Living handles the housing. 

With 40 apartments, they were able to pool enough Medicaid dollars to hire mental health professionals, peer specialists, nurses, 24-hour staff. The model has been effective in creating stability and preventing mental health crises, hospitalizations, and contact with police. The design and services offered – like communal meals – have decreased the kind of isolation that’s so prevalent among people with serious mental illnesses.

I met with several people at Rising Cedar recently. They have a variety of mental illnesses, and some have health conditions. Some have lived there for nearly 10 years. Collectively they have experienced homelessness, frequent hospitalizations and contact with the criminal justice system. 

They told me they appreciate the meals, staffing and affordable housing. 

One shared how she felt safe knowing that if she didn’t come out of her apartment, staff would check on her. If she left for the day and didn’t come back, staff would look for her. “It’s a space to be me,” she said.  

Another said that it “helps me live my best life.” 

A third person said it provides an opportunity for healing.

Group homes aren’t a great alternative

Although many people with mental illnesses are able to live in their own homes, some people need more intensive supports. For many years the Minnesota Department of Human Services used corporate foster care settings — commonly known as group homes — which are four people sharing a home, with staffing funded via a Medicaid waiver program. 

These settings often don’t work for people with serious mental illnesses. Their mental illnesses can mean they are sensitive to noise and smells. In these small homes, they share a kitchen, bathroom and living areas with three other people, which means all the potential personality conflicts of any communal living situation, especially when you aren’t choosing your roommates. 

Some real-life examples: A person with schizophrenia placed in a home with three people with intellectual disabilities, who have limited verbal ability; a person with bipolar disorder experiencing mania, so staff call the police; a person with schizoaffective disorder missing their prescribed medications.

This setting leaves limited money to hire nurses and mental health practitioners. The staff may have limited knowledge and training on mental illnesses, medication management, and de-escalation.

Unfortunately, we’re headed in this direction. 

Changes to Medicaid are preventing Touchstone from continuing some important aspects of the Rising Cedar program, while changes being discussed at the Legislature could threaten its very existence.

This couldn’t come at a worse time: Sheriffs and counties are wringing their hands over the number of people with mental illnesses who have been deemed incompetent to stand trial and are sitting in jails or waiting to leave Anoka State Hospital. A significant percentage of homeless people live with a mental illness. Which means we need to create more places like Rising Cedar — not fewer.  

The first problem arose when the state wouldn’t allow assisted living programs – like Rising Cedar and others — for anyone under 55. They were required to move to a program called Integrated Community Supports, or ICS. This meant less money for communal meals, group social activities, nursing staff and mental health professionals, all of which were so important to breaking the isolation and meeting people’s needs. The change meant a move from a congregate dining room to individual meal assistance in people’s apartments. Group activities were changed to working with people individually. They reduced overnight staff from two to one. While they have mental health professionals overseeing the program, they are no longer able to work actively with people in the ICS program.

The small group I met with said they missed communal meals that provided structure to the day. One woman said the communal meals created community, and another said it lessened the isolation. Some people struggle with food issues, which were properly addressed by the communal meals. Not everyone knows how to cook. 

A reduced nursing staff has struggled to address the health care conditions of some residents, such as diabetes, epilepsy, heart conditions and COPD, Touchstone says.

The Minnesota Department of Human Services has proposed eliminating the daily rate for ICS in favor of 15-minute billing per person as a fraud prevention tactic. The daily rate allows flexibility, crisis prevention and relational support — the very elements that keep people stable and housed. A 15-minute framework risks increased administrative burden and loss of 24/7 staffing. This will be the death knell to places like Rising Cedar. Access to 24-hour staff is critical to this model — mental health crises don’t happen during the specified work hours.

Consider what so many people with serious mental illnesses face in the community: Loneliness. Their symptoms can make it hard to develop friendships. Many say that they don’t have friends to bounce things off of. Living in a building with other people with mental illnesses provides peer support.

Symptoms also lead to misunderstandings. Many people with serious mental illnesses have faced eviction or their leases not being renewed because their neighbors don’t understand their symptoms, and there aren’t staff in the building 24/7 to intervene and help them. 

Police are often called in these situations, or people end up homeless.

At Rising Cedar, people appreciate having their own apartment. They appreciate the opportunity to be among their peers – people who understand what they are going through. They know that staff are there to help and support them. 

One shared that the program “meets people in the middle” by allowing them to have their own apartment with the support of 24/7 staff. “Despite all our diagnoses, we still have the capability to have our own apartment and practice independence,” she said. 

Another person said she is comforted by the presence of staff overnight in case someone is struggling with their mental health or headed to a crisis. 

The data collected by Touchstone demonstrates lower 911 or crisis team calls, and only four people were hospitalized last year — and just a single incident was mental health related.

While Touchstone has used donations to help fill the gap, the reality is that the change to assisted living and now the 15-minute increment proposal would harm the very people the Medicaid waiver program was developed to help. 

The Legislature and the Department of Human Services must take into account what we have learned from the Touchstone program and allow it to operate and to be replicated.

I asked the small group why not just have people with mental illnesses live in their own apartment and have a personal care attendant come in an hour or so a day. 

One said that feels like being stashed away. 

As another person put it, “This is about human beings, it’s not about politics.”

A third person said she merely asks that decision makers “speak to the people who live this every day.”  

We’ve developed a program that actually meets the needs of people with mental illnesses. Why would we kill it?