No Place Like Homeby Jessica Hanewinckel March 29, 2013
By Jessica Hanewinckel
When Devorah Shore’s son Michael was diagnosed with schizophrenia at age 19, it came as a complete shock to the family. Michael had lettered in every sport in high school and was “a stunning person,” and “a team player,” Shore says. No one suspected Michael’s accusations of people talking about him behind his back and of his coach picking on him were actually auditory hallucinations and delusions, common symptoms of paranoid schizophrenia.
“I’m a retired special education teacher, so I’m used to working with people with many different kinds of abilities and disabilities,” she says, “but nothing could have prepared me for this.”
Shore was like so many other parents whose children are diagnosed as teenagers or young adults with a severe mental illness, like schizophrenia or bipolar disorder: Grieving the sudden and very unexpected “loss” of the child they knew for one who is forever different, and struggling to find resources for their child amid a system and culture that seems to stigmatize mental illness as the “stepchild of diseases and illnesses,” as Shore puts it. She’s also like many Jewish parents who would love for their adult children to find safe, supportive, clean housing where their Judaism is accepted, nurtured and celebrated, but who, until now, had nowhere like that in San Diego to send them.
Shore is one of nearly two dozen San Diegans — lay people, professionals in the mental health field, family members of the mentally ill and simply concerned citizens who want to do what’s right — who have pooled their time, skills, resources and energy to change that.
Early this summer, after years of planning, they’ll open Chesed Home (chesed means “loving kindness” in Hebrew), an adult residential facility licensed by California Community Care Licensing where up to six adults with severe mental illness can live comfortably and safely in a nurturing environment infused with Jewish values and traditions. The goal is for residents to achieve the highest level of personal dignity and self-worth so that they can ultimately transition to independence. Chesed Home is the first project of Hope Village San Diego, a 501(c)3 founded by San Diegan Fern Siegel about 10 years ago with the mission of creating safe, supportive housing for adults with mental illness.
Like Shore and her husband Yaakov, who are the co-chairs of the advisory board, Siegel (who is the president of Hope Village, a retired CPA, a past president of Jewish Family Service and of Temple Emanu-El and a co-chair of JFS’s Behavioral Health Committee) knows all too well the need for such housing in San Diego. Her daughter, Laura, developed schizophrenia at age 22 after receiving her bachelor’s degree from a California university, and like Shore, she struggled to find Laura suitable housing at first. Those who’ve never had a severely mentally ill family member might assume such a person could simply live with family, but both Shore and Siegel say such a scenario is rarely a good idea or even possible.
“When they are diagnosed … they’re not used to having a mental illness,” says Siegel, whose daughter, now in her late 40s, is doing very well and is living a stable, independent life. “They’re used to being out in society. They don’t recognize they have a mental illness in many cases. … That’s why there’s so much suicide. They had a normal life, they had a bar or bat mitzvah, they had all that we had as kids, and all of a sudden they have this mental disorder, and they don’t know how to live with it. They don’t know how to take the medications, and the family doesn’t know what to do.”
Shore actually tried to let her son live with her in the beginning, but she quickly realized it wasn’t helping matters.
“In the beginning, we all try to take care of our kids,” she says. “We never want to send them out. Then we realize we can’t do it. Not that we won’t — we can’t. We are not equipped as families to be able to help them. I wish we could. It breaks my heart. In a perfect world, of course [Michael] could live with me. If he had cancer, God forbid, if he had something else, he’d live with us. This is a different animal. [Mentally ill adults] need professionals. Society is turning its back, and they’re the last to get any services. They should be the first, and they could be diagnosed early, treated early, and we would have them as contributing members of society.”
As a mom of a disabled son as well, Siegel knows all about the numerous government benefits available for that population. Resources are plentiful, and she says her now-adult son has always received excellent care and housing and will for his whole life, thanks to Supplemental Security Income (SSI) and lots of awareness and advocacy for those with disabilities. But for the mentally ill, services — especially good-quality housing — can be infrequent at best and downright deplorable at worst.
According to Shannon Jaccard, executive director of the San Diego office of the National Alliance for Mental Health, the availability of housing for this population locally has been declining for at least the last few decades, if not longer. It’s a double-edged sword, she says: Not only do these adults receive little from SSI, nor has the amount they receive kept up with inflation, but the housing market in San Diego is very expensive. Most board and care facilities (nonmedical, community-based residential care homes for individuals who are unable to live independently, with meals and supervision provided) are owned and operated by private parties and by families, some of whom have suffered in this housing market, and some of whom are in the business solely to maximize profits. Of those that remain open, a few are good quality, but it’s not rare to find one with feces and/or mold on the walls, narcotics being swapped between residents, meals consisting of nothing but hot dogs and spaghetti, owners who speak no English and mattresses filled with bed bugs (all things Shore’s son has faced trying to find housing).
“It’s a big issue for us in the mental health community, because housing is so critical in order for you to even be on track to recovery,” Jaccard says. “If you’re worried about where you’re going to sleep at night, you’re not thinking about what your treatment should be. You’re focusing on your very basic needs. … Or you’re being put into an environment where the question is: Would it be better to live here or to live on the streets? That’s how bad they can be. If you’re in safe housing, you can really start working on what’s best for your recovery.”
And until our culture and acceptance of mental illness evolves, she says, little will probably change.
“It’s not a sexy topic,” Jaccard says. “It’s scary. The media portrays [mental illness] as this awful, dangerous thing. The Surgeon General says only about four percent of all people with a mental illness have committed violent crimes, which means 96 percent haven’t. For some reason, in the U.S., we just shy away from people who are different than us. It’s something we don’t talk about. If people are getting educated [about mental illness] only by the media, then they’re going to keep perpetuating this stigma.”
And sometimes, even education isn’t enough. Jaccard cites the MacArthur Mental Health Module 1996 General Social Survey (“Americans’ Views of Mental Health and Illness at Century’s End: Continuity and Change”), which found that between 1950 and 1996, society’s general understanding of mental illness as a biological brain disorder had increased, yet the stigma against the mentally ill had not changed at all.
“Even though we’re moving forward with understanding what mental illness truly is, and that it’s not the person’s fault,” she says, “our attitudes and behaviors haven’t changed.”
Desipite the enormous obstacle of stigmatization and all the problems for the mentally ill that arise from that, Chesed Home is doing its part to address the issue of housing, with the added benefit of providing an environment that follows Jewish values and traditions.
The people behind the project
Hope Village was a two-time (2011 and ‘12) grantee of the Community Innovation Fund, a program of Jewish Federation of San Diego County that seeks to strengthen Jewish engagement by awarding micro-grants to innovative community programs. It also received a grant in February when community members selected it as a grantee at Federation’s Slingshot San Diego event. Over the past year and a half, Federation has worked with Hope Village’s board members free of charge, providing nearly 50 hours of support and training and $20,000 in grants.
Though it’s not a project of Federation, Siegel and Shore emphasize how much assistance Federation (and specifically Lisa Haney, director of the Community Planning and Innovation Center) has provided.
“We’re indebted to Federation,” Siegel says, “because they’ve given us all this support.”
They’ve received support and interest from other facets of the community, too. In fact, it’s this universal issue of mental illness, which seems to touch most every family in some way, that Shore says has brought Orthodox Jews like herself together with Reform Jews like Siegel — something she says might not ordinarily happen.
“We have a strong representation from the Orthodox, the ultra-Orthodox,” Shore says. “We have a strong representation from the Reform, the Conservative, the unaffiliated and Chabad. We are all coming together to work as one unit, and it’s been the most inspirational experience for us, learning about each other and sharing. It’s what Hashem wants.”
With the right mix of people — Shore’s passion for the project and ability to bring supporters together, Siegel’s initial creation of the 501(c)3 and dedication to seeing her idea through, and San Diego attorney and advisory board member Judy Belinsky’s sleuthing abilities, which led to her finding the property in Escondido that has become Chesed Home — the project has taken shape.
Nearly two dozen people comprise Hope Village’s board of directors and the advisory board. One of those is Raymond Schwartz, LCSW, who has worked closely with the state of California for nearly 40 years to develop licensing for board and care facilities for mentally ill adults. As Shore says, “he wrote the book on board and cares.” Also on the board are psychiatrists, businesspeople, social workers, attorneys and educators. It’s a well-rounded mix assembled to ensure every possible aspect of a successful residential facility is addressed.
Though they’re grateful to the entire team, one person to whom Shore and Siegel give significant credit for making Chesed Home a one-of-a-kind facility is Michael Hellman, who has owned and operated Changing Options, a highly regarded Ramona-based, licensed residential treatment center for adults with mental illness, for 25 years. Shore met Hellman when she began looking at examples of high quality facilities for mentally ill adults around the country.
“We never could have done it without him,” Shore says of Hellman. “This is where Hashem comes in, too, because he brought us there. [Hellman] spent almost two and a half hours with us that day telling us about his program. He was so gracious and warm and kind. I asked him, ‘Would you help us?’ And he said, ‘I’d love to,’ just like that.”
Hellman, who knows about licensing and state requirements better than anyone on the team, helped them apply for their license and has worked with them every step of the way. Mostly, his role has been helping the board of Hope Village model Chesed Home after Changing Options as much as they’re legally able, while still keeping within the parameters of their license.
Modeling Chesed Home after Changing Options was an obvious path to take.
“Of the members of JFS’s Behavioral Health Committee, about six of our adult Jewish kids have been at Changing Options at one level or another, and that’s when we decided it would be our model,” Siegel says.
Though Changing Options is not influenced by the values of any religion, is privately owned, very expensive (around $5,500 a month) and offers more services than Chesed Home will legally be able to offer, aspects of it lend themselves well to what Siegel and her board members are trying to accomplish.
According to Shore, Changing Options is rare in the world of mental health care. Unlike newer facilities, which must be licensed as either a board and care facility (like Chesed Home) or a day treatment program, Changing Options is dual-licensed (an option that has since been discontinued, but because Changing Options was already well established under both licenses, it was grandfathered in). That means that unlike today’s board and care facilities, which are not legally able to provide clinical treatment, it can provide its residents with superb clinical care in addition to a high quality of living.
“Michael Hellman has taught us how to try under our [board and care] license to be able to also program for our residents so they can get treatment,” Siegel says. “We may not provide the actual treatment there, but we will be able to find where they can get treatment and refer them, and we can also bring in [volunteers] to offer programming. What we’re trying to do is be a step above a board and care, even though our license is the same as a board and care, and to follow the model of Changing Options.”
If Chesed Home is at all like Changing Options in the dignity and respect it gives its residents, then that alone is encouraging. Shore’s son Michael, now 33, has been a resident at Changing Options for the past several years. Shore knows firsthand how much of a difference a good place to live makes. Unlike so many of the mentally ill, who wind up homeless, substance abusers, incarcerated or dead, Michael is now stable and managing his illness in a supervised setting. The only thing missing from his home at Changing Options is a Jewish environment. Though he doesn’t have a guaranteed spot at Chesed Home because of his mother’s position on the board (“There is to be no influence or conflict of interest among those of us [on the board] with children who might be candidates,” Siegel says), Shore says Michael talks all the time about applying to live at Chesed Home himself.
“He functions, thank God, at a relatively high level,” Shore says of her son, “enough that he comes to shul every Shabbos. He has such a strong Jewish neshemah.”
At first glance, Chesed Home looks like it was plunked down in San Diego direct from Israel. The family who built it is Italian, Shore explains, so Mediterranean architectural features, like arches, a white exterior and rounded features on the roof make it the perfect place for a residence whose values come from Judaism. The newly built Escondido facility consists of one six-resident home (the licensed portion, which was actually two separate homes that were joined by an enclosed breezeway, creating one very large space), plus two independent rental homes for up to eight residents (those are not part of the licensed portion; Shore says she hopes they’ll eventually be able to fill them with residents who “graduate” from Chesed Home and are able to live independently with roommates). Judaic elements abound in the home, from mezuzot (which Shore says she hopes to have installed with the help of local rabbis once the residents move in), to a challah board and cover, a Passover Seder plate, a havdallah set and other Judaica. There are even two microwaves, two sinks and two dishwashers in one of the two high-end kitchens (and it wasn’t even built with kosher eating in mind!). It may not be a Jewish home (it’s open to any mentally ill adult from age 18-59 from any religious or ethnic background), but it’ll certainly be infused with Judaism.
Instead of housing cars, the two large garages will be used for recreational activities. One is already set up as a home gym, with exercise equipment, rubber flooring, a large TV, a ping pong table and yoga mats. The other garage will be a staff office and an activity center for the residents, which will be available to them to do with what they wish. Shore suggests an espresso bar or a woodworking or art shop, but she says the decision lies with the residents. Private bedrooms (and a few shared) are furnished, and common areas, like the sitting areas and large dining room, are also ready to be inhabited. A computer area can fit in nicely upstairs, and outside, in the large yard, Shore suggests the possibility of growing vegetables and tea vines.
“The sky’s the limit,” she says. “We believe in the mind, body, spirit approach. Our residents’ spiritual needs will be taken care of. Their physical needs will be taken care of. And of course their mind and emotions. We want a house that’s going to be filled with pervasive caring and love. That is the biggest healing property on the planet.”
The board is hiring a part-time program director to ensure residents have some sort of activity to occupy them during the day. They can choose to stay home, and volunteers will stop by to teach classes in, say, yoga.
They can also leave during the day. Palomar Hospital is within walking distance and offers an outpatient day program. They can also walk to the many shops and restaurants in downtown Escondido, the public transit station, the post office, the grocery store and to many volunteer or job opportunities, should they choose to take them.
They’ll be required to abstain from drugs and alcohol, but no time limit will be set on any resident’s stay. (That’s determined on a case-by-case basis.)
They’ll also hire a live-in staff person or couple, who will have their own bedroom and kitchen in the home. The staff will provide 24-hour supervision and will dispense residents’ medications to them, which will be stored in a locked cabinet. Nicole Monsowit, a Hope Village board member and social worker who also has a master’s degree in health, has written Chesed Home’s health curriculum to ensure residents will receive nutritious, balanced meals. Every aspect of a successful facility has been considered, and all that’s needed now is residents to move in.
In order to live at Chesed Home, residents will pay $3,300 a month. The $1,000 in SSI that most mentally ill adults receive will help to offset that cost. Because Chesed Home is funded by Hope Village, a nonprofit, any donated funds go toward the wellbeing of the residents.
Hope Village is currently renting the Chesed Home property with a three-year option to buy it for $1.3 million. (That was a year ago, meaning they have two years left.) They’ve raised $400,000 to date in grants, pledges and donations, some of which went to start-up costs, some to capital. If they can raise another $300,000, they may be able to make a down payment, Siegel says.
“There is an imminent need to raise money to buy the property,” Shore says, “because we have that window of time. We want to buy [the property] so once we have it we can hopefully lower [the cost to residents]. We can give out some scholarships, open the independent rental homes. We’ll get this project going, have a successful track record and then go on to our next project.”
Siegel and Shore recognize the intense competition for funding from private donors in the San Diego community, but they’ve provided potential donors with lots of options should they choose to contribute to Chesed Home. Naming opportunities are available, and they say donors don’t need to have a personal or family connection to mental illness to donate or show their support.
“Serving the mentally ill is the greatest need worldwide,” Shore says. “For the developmentally delayed, for kids who are born with Down’s syndrome, for example, there are hospitals, fun runs, services. [The government] can help parents with up to $5,000 a month. Nothing like this exists for the mentally ill.
“Some people may say, ‘Well, why would I give money to a place that’s going to house a maximum of six people at a time?’ This is going to be a continuum of people. They come in, they leave, and more people come in. But you’re also serving their families, the community of the families, the friends of the families and society.
“We need people with vision and a big heart. We’re looking for volunteers, we’re looking for donors. This is the first project of Hope Village San Diego. It’s the tip of the iceberg, because there are so many needs out there.”
The board of Hope Village San Diego is currently interviewing for the position of program director for Chesed Home. It plans to take resident applications in May, with an anticipated opening some time in June. For more information on Chesed Home or to donate, visit www.chesedhome.org. You can also reach Hope Village San Diego at (619) 988-4873.