When her son Alex was young, Lorie Regenold said she thought of him as a “typical, rambunctious boy.” But when he got into his late teens, he started getting into trouble.
Alex, Regenold recalled, “seemed to be using alcohol a lot more than I would’ve expected.” It turned out that his alcohol use was part of a much larger problem. “What I’m learning now is that’s when his mental health symptoms started peaking and getting worse,” she said. At the time, she continued, “I didn’t know that at all. I was focused on, ‘My son needs help with addiction.’”
The reality was that Alex’s alcohol use masked his early symptoms of schizophrenia. By the time his mental health diagnosis became clear, Alex had been in and out of addiction treatment programs and placed on a 72-hour hold in a hospital psychiatric unit.
When it became clear that Alex’s addiction issues stemmed from his serious mental illness (SMI), Regenold focused on trying to find a place where her son could live safely — and get the mental health support he so desperately needed.
After bouncing around in a number of places and even being homeless for a time, Alex moved into an adult foster home. But Regenold said that she eventually discovered that the home was unsafe and poorly run: “He wasn’t getting the proper medication. The house was dirty. He spent most of his time locked in his bedroom because he didn’t feel safe there. The more I got to know about this home, the scarier it felt.”
After much search and struggle, Regenold found a better place for her Alex. He’s now happily settled at Martha House in Shakopee, an assisted living program for adults with physical and developmental disabilities and mental health disorders.
“He’s doing so well there,” Regenold said. “He’s amazing. He hasn’t been this healthy in 10 years. It is because he has a safe, stable environment with consistent care.”
Even though Alex has good place to live now, Regenold, 54, admits that she still worries about what will his life be like when she gets older. Making sure her son has a safe place to live requires advocacy and effort, Regenold said: She wants her son to have a stable home for the rest of his life.
“How can I handle this when I’m 80?” she asked. “The fight that it took to get him to a safe place was hard. I can’t imagine fighting like that when I’m elderly.”
Recently, this concern about the future led Regenold to join a group of parents to organize a forum titled, “Housing Dilemma for Adults with Serious Mental Illness: What Happens After Parents are Gone?” to be held at Edina City Hall, 4801 2. 50 th St., on Wednesday, Sept. 6, from 6:30 to 8 p.m.
The forum, sponsored by NAMI Minnesota and the League of Women Voters, will be moderated by Alice Hausman, former Minnesota state representative and Housing Committee chair, and will feature three panelists: Jennifer Leimale Ho, commissioner, Minnesota Housing; Eric Grumdahl, Minnesota Department of Human Services assistant commissioner of health, housing and deaf and hard of hearing; and Jill Wiedemann-West, CEO of People Incorporated.
Mindy Greiling, former Minnesota state representative, author and mother of an adult son with schizophrenia, was part of the forum’s planning committee. As former board chair of NAMI Ramsey County, Greiling knows many other parents of adults with SMI. The upcoming forum was inspired in part, she said, by a conversation she had with a couple, both in their 80s, who are still deeply involved in everyday affairs their adult son, who lives with schizophrenia.
“They are asking themselves,” Greiling said, “‘What are we going to do?’ They bought a house for their son but his mom still goes over to clean it. This can’t go on forever.” These parents told her that one day they’ll need to find another living arrangement for their son but are not sure where that will be.
In her work leading the statewide nonprofit People Incorporated in its efforts to support people living with SMI, Wiedemann-West said that she often speaks with parents in similar situations.
“There are a lot of parents who really lean in and take care of their vulnerable children,” she said. “As these parents get older they look for resources or ways they can make sure that when they are no longer around, there will be someone who can care for their children and support their housing needs. It is a really, really challenging issue. Much more needs to be done to address it.”
‘It shouldn’t be that hard’
As a former legislator, Greiling has a keen understanding of state budgets. So she knows that there is plenty of money available to at least get a good, strong start at addressing this problem.
“There was a billion dollars allocated from the Legislature last year for affordable housing,” Greiling said. “We would like people to really use their creativity to think about creating ideal housing for people with SMI.”
Too often, Greiling said, adults with SMI get overlooked when housing programs for people with disabilities are developed. She doesn’t want that to happen again this year. “When you think of housing for people with disabilities,” Greiling said, “what often comes to mind are physically handicapped people or people with developmental disabilities.”
SMI, she said, is also a serious disability. And because some people with SMI struggle to find stable, supportive housing, she explained, many end up homeless or even incarcerated.
Social Security/disability benefits and medical assistance paid for Regenold’s son’s room in the adult foster home. Even though the quality of care in the home was questionable, she said the cost was still surprisingly high: For the same amount of money, Alex is now living in a more stable and welcoming home.
Regenold hopes that by making stories like Alex’s public, more people will become aware of the issue. “Maybe shining a light on the funding will make people more interested in the topic than just walking past the guy on the street who is building a nest in the median for his overnight stay,” she said. “People just step over people like that, but if you put a light on the amount of money that is being spent by taxpayers, more people will pay attention.”
Regenold would like to see serious action taken on this issue. “I would like a clear plan for safe and well-run housing for people who can’t advocate for themselves. It shouldn’t be that hard for people with SMI to find a safe place to live.”
How housing helps
Hausman first learned about housing concerns for adults with SMI and their families a few years ago when, as a state legislator and chair of the housing committee, she attended a NAMI-led informational session on housing featuring the stories of people with SMI.
“One person said he had a stable life and he credited it with having stable and secure housing,” Hausman said. But when other presenters spoke, their stories were different: “Their lives were difficult and complicated. They all named the lack of stable, affordable housing as a contributing factor. That opened my eyes.”
Hausman also went to another meeting held in Greiling’s living room. She’d invited parents of adults with SMI to share their stories, Hausman recalled: “They all had a similar anxiety. They were able to be in partnership with their adult child to work on their housing issues now, but they all had this fear about what would happen when they are gone.”
Hearing these stories opened Hausman’s mind about the importance of stable housing. “Nothing else in life goes well if you don’t have a safe space to sleep at night,” she said. “This is true for everyone, no matter what their situation.”
Hausman said she hopes that the upcoming forum will be a place for, “people to talk and learn about the issues.” Giving attendees an opportunity to ask questions of people in influential positions could help move progress forward, she added. “We want to get the model right. There are some places where we pour the public money in and residents aren’t getting the services they need. We want to lift up places that are doing it right. And we want to talk about ways we can duplicate that. This is stage one.”
For Alex, finding a safe place to live has been a lifesaver. Before, when his housing situation was unstable, his mental health was chaotic at best, and he rarely spent time with his family. Now, he is much more settled.
“I see Alex completely differently than I did a couple of years ago,” Regenold said. “I think it is his housing situation.” Alex’s mental health is so stable these days that he’s been spending more time with Regenold and his younger siblings: “We had the first Thanksgiving with all of my kids together just a couple of years ago. Now he comes to my house and stays overnight. That’s all because he feels safe in his own home.”
Register here to attend “Housing Dilemma for Adults with Serious Mental Illness: What Happens After Parents are Gone?”