In Northampton, Massachusetts, set in a residential neighborhood on a busy street, a small, unassuming white cape-style house offers refuge for people experiencing mental health issues or distress where they can take some time for themselves, come and go as they please, and, most importantly, converse with the staff, all of whom have experienced mental and emotional health issues themselves.
It’s called Afiya House — Afiya being a Swahili word meaning physical, spiritual and emotional health and well-being. Afiya House is one of two peer-run respite homes in Massachusetts, but it is also unique in how it operates. Ask nearly any of the leaders in Connecticut’s mental health nonprofit ecosphere what a peer-run respite program in Connecticut should look like and they point to Afiya.
The COVID-19 pandemic took Connecticut’s already beleaguered mental health system and pushed it over the edge. Those facing mental health issues in Connecticut – and the mental health system itself – face a multitude of challenges: multi-day wait times in hospital behavioral health emergency rooms, a lack of inpatient beds, a lack of community-based programs, a lack of early intervention programs and a shortage of therapists, psychologists and psychiatrists.
It’s a problem several mental health advocates in Connecticut believe warrants an alternative to the inpatient hospital system for mental health. They argue Connecticut’s state government takes an overly clinical approach to mental health and that hospital stays can often leave individuals feeling more traumatized. Inpatient units are designed for strict safety, not therapy.
“Clinical scenarios involve locked wards and a lot of the locked psych wards aren’t terribly therapeutic when you get right down to it.”
“Clinical scenarios involve locked wards and a lot of the locked psych wards aren’t terribly therapeutic when you get right down to it,” says Thomas Burr of the National Alliance on Mental Illness. “I have talked to so many people who say, ‘I was in a bad place and a loved one called 911 and I got dragged off to the ER, wound up in the locked psych ward and it was awful and next time I’m just not calling anybody and let the chips fall where they may.”
“So, we really need an alternative for people who have less than great experiences going to inpatient hospitalization,” Burr said. “They need someplace else they can go, staffed by people who really get them because they’ve been down that road themselves, and just need a place to regather themselves and get back into a state of equilibrium.”
Advocates believe the Afiya house model is a possible solution.
The inside of Afiya House looks like any other house one may come across: the living room is decorated with art, stocked with musical instruments, yarn for knitting, games, books puzzles; a kitchen, bathrooms, television room and an extra room where the overnight staff – called advocates – sleep.
Those staying at Afiya house are free to come and go as they please, free to utilize the advocates to unload their emotional burdens or not, free to utilize the space and their time away from their lives as they see fit. Advocates don’t inquire about an individual’s diagnosis and don’t call the police or crisis intervention if someone has thoughts of harming themselves, instead they talk through those thoughts.
And each advocate is there because they have either been through the mental health system themselves or have experienced mental health issues, addiction, homelessness, domestic violence or other social, emotional or spiritual crises. They know what it’s like to live through these times, utilizing their experiences to better aide their residents on their own path.
“Honestly, for many folks who come to stay with us, it might be the first time or one of the first times they’ve felt in the world they can talk about anything, things they thought they’re not allowed to talk about, that society tells them not to talk about. They’re afraid of being judged, they’re afraid of being locked up,” says Ephraim, Director of Afiya House. “I’ve been working at the house for as long as it has been open, so for ten years now, and I consider it a profound honor and a really sacred job to be able to hold people’s pain, their stories and everything they’re going through, and to be there in that moment.”
While Connecticut did pass a bevy of mental health bills last year, most of it was aimed at youth services and some will take years to be fully implemented. One program in the House bill will not complete its “pilot program” phase until 2029. The Afiya house model, on the other hand, is peer-run respite homes for those facing mental health issues and is primarily geared toward adults.
“I do think that in many ways the adult side of mental health was overlooked this past session,” says Jordan Fairchild of Keep the Promise, a coalition of mental health advocacy groups formed after Connecticut began shutting down mental health institutions in the 1990s, part of the wave of deinstitutionalization that began nationwide in the 1970s. “I think we need a mental health plan as a state. I feel a lot of what we’ve done has been sort of pieced together and is really reactive to crisis as opposed to preventing crisis.”
What peer-run respites offer, according to mental health advocates, is a place where people are free to be themselves, voice their concerns, fears, trauma and distress without fear of repercussions or coercion, and talk with others who have translated their own lived experience with mental health into a profession and a cause.
“We know the evidence shows that peer support works,” said Michaela Fissel, executive director at Advocacy Unlimited, a peer-led nonprofit in Connecticut that advocates for education and support in the field of mental health, addiction and trauma. “Research supports peer support as an evidence-based model, but you don’t hear that, you don’t hear the State of Connecticut or you don’t hear communities of practice talking about the effectiveness of peer support and I think it’s because people are scared that it’s not enough, it’s not enough for people to simply be with other people.”
An Overly Clinical Approach
The criticism leveled at Connecticut’s current mental health system is that it’s overly clinical, often relying on the hospital system with its locked inpatient units and medication, and that often requires people to reach a state of crisis before they can get any kind of intervention.
“What I’ve found through my work, my own personal experience and research that I’ve done, is that people absolutely ask for help,” said Fissel. “Are we listening, though? Or are we waiting for them to say the right words? Are we waiting for the kind of buzz word or key word that needs to be stated? Are we waiting for them to reach a certain threshold before we can admit them or take them seriously? That is my biggest concern with how we approach emotional distress and struggle is that we’ve overly clinicalized everything to the point we will only admit someone if they check certain boxes.”
“Our approach to dealing with mental health crises — and I say that in the lower-case sense, sort of the individual who is in a time of crisis and is seeking help – has been very coercive and very clinical,” Fairchild said. “Oftentimes you’ll call into a helpline and the police will show up. Maybe you’ll go into an emergency room, maybe you’ll end up going to an inpatient pysch hospital. We know that those approaches tend to not have very good outcomes.”
Studies published in 2016 and 2017 by the journal JAMA Psychiatry found higher suicide rates for those discharged from inpatient psychiatric units rose following hospitalization and indicated that greater support and services should be available to individuals, following hospitalization. A 2019 review by the Harvard Review of Psychiatry concluded that, “Among patients recently discharged psychiatric hospitalization, rates of suicide deaths and attempts were far higher than in the general population or even in unselected clinical samples of comparable patients.”
“That is extremely problematic. We know this approach doesn’t really work,” Fairchild said. “This is a medical system that is very overloaded, especially right now, and they have to move, they have to move from one person to the next, so they come in, prescribe something perhaps, maybe you get a couple hours one on one with someone if you’re lucky, but there’s not a lot of followup.”
“Peer respite is really a piece of our crisis service system in Connecticut that is completely missing.”
“When we talk about peer respite, that is an alternative to that problem and this is the problem it’s trying answer,” Fairchild continued. “Peer respite is really a piece of our crisis service system in Connecticut that is completely missing.”
For advocates, the idea of peer-run respite homes in Connecticut is not a matter of either/or but rather, another option when people are in need. Inpatient psychiatric units, medication and therapy have their place, but, they argue, an alternative to inpatient hospitalization should be available. Peer-run respite homes are a fairly new idea, at least for Connecticut.
A total of fifteen other states contain peer-run respite homes, including Connecticut’s nearest neighbors, New York, Massachusetts and Rhode Island. Those homes differ in their approach, but the idea is the same: individuals can stay at these homes, take a break, and converse with trained workers who have been through similar situations themselves.
“We’re just a little bit behind the curve here in Connecticut and I think a lot of it is because the powers that be see everything through a clinical lens, the medical model,” Burr said. “And not that there isn’t a place for that, but it doesn’t work for everybody.”
Connecticut has respite homes geared toward individuals facing dementia or cognitive impairment. Often, the respite is for the families caring for that individual, allowing them a brief break from the often-difficult task of caring for a loved one with disabilities or cognitive decline.
Respites for mental health and addiction also exist in Connecticut, run by organizations like Continuum of Care, which offer clinical services, licensed nurses, psycho-educational and recreational groups and peer support. Mercy House’s Community Respite Program in Hartford, which provides short-term respite for those experiencing mental health issues and provide “intensive case management to assist them in returning to independent living.”
And clinical respite settings have their place in the system of mental health care, as well, particularly when it comes to those facing substance addiction issues, Burr says. “Clinical respites are run by medical professionals and there is certainly a place for that. If someone has a co-occurring disorder with substance abuse and shows up at a place and is detoxing, you need that level of care because you need someone to be monitoring their physical health and potentially intervening with medication.”
Peer supports are already utilized in Connecticut for some mental health and addiction services, according to Fissel, who says peer support specialists and peer recovery specialists are employed throughout the state by behavioral health organizations like the Connecticut Mental Health Center in New Haven and Hartford HealthCare.
Advocacy Unlimited, itself, provides a number of peer support programs like the Bridger Program, which utilizes peer specialists with lived experience in the field of mental health and addiction to lend an ear and support to those currently facing similar issues with an eye toward moving forward.
So, the concept of peer-support and respite homes is not new to the state, per se. Peer specialists are already utilized, but the idea of non-clinical staff running a residence in which those facing mental health issues has yet to gain a foothold.
That might be because of the open nature of a place like Afiya house, where people are free to come and go as they please, share without fear of hospitalization, are not required to undergo treatment and are not staffed by medical personnel. Burr believes it’s just a matter of understanding how peer-run respites fit into the dynamic of mental health care.
“It’s just understanding what the concept really is and where it fits into the whole scheme of things,” Burr says. “I don’t think its adversarial, it’s just they weren’t aware and just didn’t think they needed it. You don’t know what you don’t know basically.”
It Starts with a Conversation
Afiya House is part of the broader Wildflower Alliance in Massachusetts, a community organization that specializes in peer-to-peer support networks and operates several centers in western Massachusetts where people can show up, have some coffee or food and talk about what is going on in their lives during peer-support groups. However, Afiya House remains their only peer-run respite home for those facing mental health issues (the organization does run an apartment building that caters to those facing homelessness).
The house is small, with only three bedrooms for residents who can stay for up to seven nights, and potential residents have to phone Afiya for an initial conversation to be sure they will be a good fit for the house and can potentially benefit from their stay — there were two phone calls to Afiya House over the course of our one-hour interview with Ephraim.
“It starts with a conversation,” Ephraim says of people who want to come to Afiya House. “They give us a call and let us know what’s going on for them and what they’re looking for, and we let them know what it is that we do. Sometimes people call us and decide we’re not what they’re looking for, and sometimes they just may not be a good fit for our mission at that time and we just encourage them to call again in the future.”
“We are very clear that what the person is going through is absolutely a crisis, as we believe that is only to be defined by the person themselves,” Ephraim wrote in a follow-up email. “We just are one small resource and have to remain true to the mission of our space. Resources should be given to each person who calls who isn’t a good fit for the house at that time, whether that was decided by the team or by the person themselves.”
“When we’re trying to figure out is somebody is a going to be a good fit, it’s less about their diagnosis because we don’t care about that, whether they have one or they don’t.”
Afiya doesn’t ask about a mental health diagnosis. To Ephraim that’s beside the point. “When we’re trying to figure out if somebody is a going to be a good fit, it’s less about their diagnosis because we don’t care about that, whether they have one or they don’t,” Ephraim said. “I’d much rather hear somebody’s story and it makes a heck of a lot more sense in context to hear that somebody comes from a horrific domestic violence situation versus this ‘disorder.’”
But residents are free to discuss such things. They’re free to discuss pretty much anything with the advocates working at the house who all have lived through similar mental health situations and received training through the Wildflower Alliance, which can cost as much as $7,500 for 24 Hour Trainings.
Afiya’s approach can appear radical for a society that has become steeped in idea of medication, medical degrees, doctors and hospitals – particularly for those dealing with mental health issues and the accompanying social stigma. There’s no curfew or requirement that they share or participate in peer support groups; people can continue going to work, socialize with their friends or attend their own doctor and therapy appointments.
“Anything they do in their life, we want them to still be able to do that,” Ephraim said. “So, they can come and go as they choose, and they have access to as much or as little peer support as they desire while they’re staying with us.”
“It’s an approach that is very therapeutic,” Fissel says. “It’s also taking a person-centered approach, where the person identifies as having reached a point where they’re concerned about their own well-being and they say, ‘I need somewhere to go to take a breath, to intentionally pause’ by providing them a home-like setting.”
Originally, there were supposed to be five Afiya Houses in Massachusetts, however, the Massachusetts Department of Mental Health, which provides all of Afiya’s funding, ended up diverting the money toward a new recovery center in Worcester, according to Ephraim.
Although they are hoping to get a second house established soon, having just three beds available at any given time, means they had to establish a waiting list – something that may appear counterproductive when addressing the needs of individuals who may be facing a crisis period in their lives.
“When we first opened, we thought a waiting list would be silly, because who the heck can wait for their crisis,” Ephraim said. “However, we were wrong. We learned within maybe the first week or two that the reality was for so many people, just having the idea that there was something coming enough to hold on and stay out of the hospital. So, we created a small wait list of three people, so once they’re on it, they’re never waiting more than a week to come stay with us.”
Afiya House also offers a peer-support line so people can call in and speak with one of their advocates about whatever is going on in their lives. “Some folks just want a connection,” Ephraim said. “Some folks are dealing with pretty intense stuff, feelings of wanting to die and they can call and talk about that on the line and it’s totally confidential, totally non-coercive. Nobody is going to call the police on them, nobody is going to call crisis on them, they’re just going to talk through it like we do at the house.”
However, Afiya House’s approach to dealing with such issues as expressions of wanting to die, may get to the root of one of the roadblocks for similar efforts in Connecticut, and speaks to how much they differ from traditional mental health resources. “While I work in alternatives, I’m not super against everything that’s traditional,” Ephraim says. “I just want people to have choices.”
“What’s baffling me and other advocates for peer respite in Connecticut is we’ve got peer respites in every state that borders us, and they’ve been shown to be extremely effective,” Fairchild said. “This would be the time to look at what’s working and what’s not working in our mental health system, and I think that we can say peer services have been a really strong suit for Connecticut, so it doesn’t make sense to me for us to be falling behind on the peer respite piece of it in the crisis world.”
According to Michaela Fissel, however, there are two roadblocks to peer-run respite homes in Connecticut: money and fear.
Money and Fear
Estimates for the cost of inpatient psychiatric care at a hospital can range from $5,000 upwards of $9,000 per stay, which typically lasts between seven and eleven days, according to 2018 study conducted by the Leonard D. Schaeffer Center for Health Policy & Economics called The Cost of Mental Health: Connecticut Facts and Figures. That cost estimate was based on national figures, but the study also found that the State of Connecticut spent more per capita on mental health through the Department of Mental Health and Addiction Services (DMHAS) than all but six other states.
Advocates see peer-run respites as a possible lower-cost alternative to inpatient psychiatric care. Afiya House’s annual budget, which was shared with Connecticut Inside Investigator, was a little over $519,000, which included federal COVID dollars.
According to a 2017 report produced by the Western Mass Recovery Learning Community called Peer Respite Review & Strategies for the State of Connecticut, which analyzed Afiya’s 2018 budget of $443,928 compared to the cost of inpatient psychiatric stays, found the average cost per resident per night was $441.
“As stays at Afiya are generally seven nights long, this means that the typical cost of a stay at the house will be about $3,087,” wrote author Sera Davidow. “This is about $2,600 less than the national average for a psychiatric hospital stay.”
The results were in line with peer-run respite homes in Nebraska, which found the Keya house expended $273 per day for a resident, as opposed to $1,200 per day for inpatient hospital care.
The author notes that not everyone who stays at a peer respite would go to the hospital if not for the respite house, but surveys conducted by Afiya House and Keya House found that between 58 percent and 86 percent of individuals said the respite homes helped them avoid going to the hospital. Additionally, 67 percent of people who stayed at Afiya reported reduced hospitalizations, according to the study. A 2015 study by the U.S. Department of Health and Human Services found reduced rates of hospitalizations and increased savings associated with peer respite programs.
In a document prepared by the Connecticut Keep the Promise Coalition advocating for peer respite homes in Connecticut, the coalition of mental health groups requested $7.5 million for five peer-run respite homes in Connecticut, one for each of DMHAS’s mental health regions, and a sixth home that would be reserved for “people experiencing psychosis, and will provide longer stays, up to several months.”
They estimate the ongoing annual cost at $6 million per year, part of their 2022 ask of the legislature that never found footing in the slate of mental health bills passed during the session.
“When you consider how much money is spent in this state on different things, it’s not a lot of money and we hope that it would save at least that much from people not having to cycle through emergency rooms and inpatient psychiatric hospitalization, which is extremely expensive,” Burr said.
“We put so much money into clinical services, I think the least that the state, our elected officials can do, is invest meaningfully in the development and implementation of peer respite so it can be a sustainable and effective model of support,” Fissel said.
But the fear aspect may present the bigger obstacle, in the Land of Steady Habits some may be uncomfortable with the idea of a respite house watched over by non-medical personnel, particularly when it comes to the issue of self-harm, harm toward others and medication.
Ephraim says that in the 10 years he’s been at Afiya House, they had three people overdose while staying with them. In all three incidents, the individual came to their staff after they had consumed the drugs, said what they had done and were taken for appropriate medical services.
Suicides, overdoses and injury occur in hospital settings as well, even those overseen by the State of Connecticut. Between 2017 and 2018 there were eight suicide attempts at the Albert J. Solnit Center South in Middletown, a state-run psychiatric facility for youth, and one suicide that resulted in the death of a 16-year-old pregnant girl. In 2019, a patient at Waterbury Hospital’s Behavioral Health Unit died by hanging himself.
Fissel says she takes those fears seriously but, pointing back to the studies showing suicide rates increase following hospitalization, says there’s no evidence to support those fears.
“It’s almost like when someone goes to inpatient, everything has to go back to zero.”
Part of the difficulty with in-patient hospitalization for those dealing with mental health issues is having to put the rest of their lives on hold and be separated from friends and family, which can contribute to their overall stress in that situation, whereas in a peer respite, they can continue to do the things that are meaningful to them. “It’s almost like when someone goes to inpatient, everything has to go back to zero,” Fissel said.
There is also the possibility of problems arising from the neighborhood in which a respite home may be placed. Ephraim says that, generally, the neighbors have been great. “When we first came into the neighborhood, we brought everyone a fruit basket and introduced ourselves,” Ephraim said, adding that the family next door is “wonderful” and “very supportive.”
However, one other neighbor who temporarily rented the house on the other side of Afiya would routinely call the police on them, including calling the police on an Afiya resident who was doing Tai Chi in Afiya’s back yard. But the house was eventually sold to a family and there has been no problems since.
He also recalls a resident who’d been to Afiya house several times and was considered a class-3 sexual offender for crimes committed in his youth. Even though he didn’t have to, the individual registered his one-week stay with local authorities. When the media got wind of it – weeks after the individual had already left Afiya House – it became news. The outcry resulted in a policy change for Afiya. The next time that individual called for a room, Ephraim had to turn him down.
“If I’m honest, it still impacts me to this day when I think about it,” Ephraim said, adding that he thought a great deal of this person and had a good connection with him. “When he called to stay again, I was the person who answered the call, thank goodness, and I told him, and he cried. Sobbed on the phone and said, ‘this is the only place I can go. The only place people treat me like a person, and I can just, you know be there. And now where will I go. There’s nothing.’”
“We claim that we want folks to do better, but then we take away anything that could support them to do that,” Ephraim said. “Do I feel great about the crime this person committed? Nope. Am I having him over to dinner with my kids? No. However, do I want him to get support? Absolutely. People are wanting to change, and I want them to do that.”
Slipping Through the Cracks
Ephraim has many stories, both his own, and from his decade of experience working at Afiya House, but the one he recounts with the greatest conviction when discussing the need for places like Afiya, is that of a friend he lost to suicide seventeen years ago.
Married and having just given birth to her second child, she was living in “this horrible domestic violence situation,” Ephraim said. She was able to connect to state services and get an apartment of her own and some money for food and to care for her children, but it wasn’t enough to pay the bills and she struggled financially, unable to make ends meet.
“On paper, it sounds great. They got this woman and her children an apartment, but then what?” Ephraim said. “They don’t really give you all the money you need for everything, and she has two small babies at home and she’s struggling because she just had this baby and she’s struggling to even deal with everything that’s going plus dealing with years of abuse.”
When the father came to pick up his kids one day for his scheduled visit, he found her dead.
“This is part of how I got into this work, just looking at the ways we’re failing people, they’re slipping through the cracks and we’re losing them,” Ephraim said. “It’s not enough to just have these physical services, or these mental health services where often people come out of there more traumatized than when they went in.”
Burr says that despite Connecticut having clinical respites for those facing mental health issues, there isn’t enough to meet the need. Even if advocates are successful in getting legislative action on peer-run respite houses, five will likely not be enough, but it’s a start for something they see as a “critical missing piece of the puzzle.”
“I’ve met so many people who have just not been helped by the medical model and had really poor experiences with medications and for whatever reason, it just doesn’t work for them,” Burr said. “We’ve been in conversation with the folks at DHMAS, who seem like they’re very slowly coming around to the idea,”
“I believe this needs to come through legislative mandate,” Fissel said. “I believe the legislature needs to tell the State of Connecticut and DHMAS that they must fund peer respites indefinitely.”
“Our whole community is sold on recovery like we have it all figured out,” Fissel said. “We do not have it figured out and we continue to mess up people’s lives on the daily, and I know it because I’m in the work, I see it day in and day out.”
For Ephraim, it’s less about medication and locked wards and state funding and more about meeting people where they are in their lives for a moment of quiet reflection and support, something that can be difficult to do in an overburdened hospital mental health setting, or through therapeutic services that can sometimes be difficult and expensive to access.
“Where are we meeting the person? Where are we actually sitting with someone and hearing what’s going on with them and offering them that space for connection and healing, because often people just feel isolated and alone,” Ephraim said. “Sometimes just speaking aloud these things can be healing.”