The Intelligent Experiment

Could a Tucson co-op for disabled people become the greatest community since 'The Golden Girls'?

Darlene Dobroslavic and Val Schaffer--both mothers of men with severe mental and behavioral disabilities--make for quite an odd couple.

Dobroslavic, a real-estate agent who often goes by the nickname "Dar," is an outspoken, straightforward type. Schaffer is a juvenile-court attorney with a mild-mannered demeanor reminiscent of the doting mothers parodied by Scott Thompson in Kids in the Hall sketches.

They're alike, however, in that they're both all business when it comes to what Dobroslavic has termed "the intelligent experiment."

The women have known each other for years, becoming acquainted through the grapevine that connected their sons. In that time, they've come to realize the limitations in the housing and care options provided by the state government for their kids.

So they've decided to take matters into their own hands and are building a tight-knit community in which their sons, along with their caregivers, can lead affordable, satisfying and stable lives in one place. It's a long-term experiment that's unlike anything that's ever been tried in Arizona--and maybe even in the United States, according to Ric Zaharia, district administrator for the Arizona Department of Economic Security's Division of Developmental Disabilities.

"The idea of families coming together as kind of cooperative entities is fairly novel in Arizona," he said. "In fact, the state had a grant three or four years ago to see how families could form co-ops and share resources and manage their kids' services. This one has gone beyond anything that has been talked about or done, at least in this generation--and that is actually talking about long-term planning options in terms of a roof over somebody's head and a community that they would live in. They've kind of broken new ground here."

The primary architects of this venture are hoping others will join them.

Dobroslavic finally decided to act on the community-living idea she and others had been kicking around after reading an e-mail from a friend of Schaffer's in New York. The friend, Joan Baizer, is the mother of a 19-year-old woman named Jessica who possesses the cognitive level of a toddler and who suffers from a problematic seizure disorder; her e-mail spoke of the hopelessness she and other parents of children with multiple, serious disabilities feel when confronted with the realities of care provided by the state, Dobroslavic said.

Baizer found that she couldn't cope with her daughter's difficult adolescence. There were too many sleepless nights dealing with seizures and behavioral outbursts, and there were physical battles to contain every morning. So she put Jessica in a group home three years ago; the services Jessica gets are "probably fairly good," Baizer noted, "but still very far from ideal.

"Jessica hates being there, and I hate it for her," Baizer, a single mother and career scientist, wrote. "The staff are more or less OK, but most of what they do is maintenance; (there are) very few outings or stimulating activities for her.

"I really wanted Jessica in an integrated environment. She was 'included' in school when she was little, but that fell apart as her behavior got worse. I hate having her in a segregated school and soon (a) day-program setting, but at present, there are really no alternatives. When she was little, I arranged a lot of play dates with typical peers, but that is harder and harder to do when the other kids are beyond Play-Doh and the zoo."

That e-mail struck a chord with Dobroslavic.

"This is what we don't want; this is what we've been through," she said. "These are the things that don't feel right to us."

Schaffer and Dobroslavic were scheduled to close on the six-unit apartment complex on the corner of 15th Street and Plumer Avenue on Thursday, May 10, and they're hoping five families--they currently have three--will each buy one unit at $100,000 apiece, or that a benefactor will buy the units for them, and then work up some sort of leaseback to those who can't shell out that kind of money. The final unit will be used as a common room.

They're both putting a lot on the line financially to make this idea a reality--refinancing houses, taking a commercial loan and stretching to make every dollar count whenever they can. They look at such sacrifices as helping to build a future for their sons.

"Dar and I are people of modest means," Schaffer said. "We don't make big bucks. We're both single parents; we both have two kids we're trying to take care of. But, you know, even people of modest means have more financial ability than they realize. When we started this, it didn't occur to me that we could do this on our own. But there are commercial lenders that will do it; you do have equity in your home."

Dobroslavic, whose son suffers from mental retardation, mild cerebral palsy and bipolar disorder, added that they're also "looking at the long view," realizing that their sons won't have many of the expenses of children without disabilities.

"We don't have weddings; we don't have cars, insurance, birthdays, first marriages, divorces, second marriages--all these things that other people spend money on," she said.

The long view includes a vision of a community where residents with disabilities, spurred on by caregivers, health-care workers and others, will help one another and, in the process, themselves.

A caregiver, either paid or unpaid, will live in each unit with the disabled person, helping him or her with everyday living. Schaffer said paid positions might be attractive to those "looking to make their income go further" in a notoriously undervalued field. Unpaid positions, meanwhile, might appeal to students or people in "transitional" periods of their lives.

The idea is that the families or the disabled people themselves will own the property, so the residents won't be subject to financial or political concerns of state-assistance programs. And hopes are high that the disabled people will receive a higher standard of consistent care than they would otherwise get in a state group home.

"Most people don't know that in Tucson, these adult children get put in group homes, but they can be moved around, from home to home, depending upon resources and health problems," said Sharon Harrington, executive director of the Alliance for Community Maintenance Enterprises, the umbrella organization under which the co-op will operate. "It's really difficult for families to have continuity."

Harrington said Tucson has good housing programs managed by the Division of Developmental Disabilities, but if the people have multiple disabilities--as Dobroslavic's and Schaffer's sons do--they can be bounced around. Staff turnover is also high, she said.

Both Dobroslavic and Schaffer agreed with Harrington that many good people at the DDD have gone above and beyond the call of duty with the resources they have. But Dobroslavic also said, without elaborating, that she felt the state had "abused" her son through negligence.

"I don't really want to talk about it," she said. "It makes me cry."

Schaffer diplomatically interjected: "The people who work for the system are well-intentioned, good people. They don't set out to neglect or abuse people, but the turnaround time on addressing abuses is so slow. It's just the reality. They think in terms of slots. They have an opening at a group home. A slot is open, and if your kid's behaviors fit in, you get that slot."

Zaharia admitted that a person with severe disabilities--someone with a behavioral disorder that's difficult to manage and treat, for example--may be moved "a couple of times over a decade."

"Caregivers burn out; the agency feels like it's maximized its patience and its tolerance, and might, in fact, ask to have a person moved to a different program agency. But we obviously work, and the providers obviously work, for continuity and stability in these folks' lives. If it happens, it happens because we've found no other option."

The co-op will provide an alternative, Dobroslavic and Schaffer assert. It's also the fulfillment of a longtime goal.

Harrington, Dobroslavic and Schaffer started out as part of a group of women looking for day care for their children, after the day-care center they all frequented closed. (Harrington's kids didn't have special needs.)

After some discussion, Dobroslavic and Schaffer banded together with Harrington, who has a background in special education and an interest in art, to create an organization, ACME (Artists Crafters Masters Educators) Studio. They wanted to provide art education for everyone, regardless of whether they have special needs. (The co-op--which has officially been dubbed Arroyo Chico Member Enterprises Co-Op--the arts studio and the umbrella organization all share the ACME acronym.)

"Our dream back then was to form a community that was self-sufficient for our kids and our families" and was coupled with the arts group, Harrington said. Over the years, that dream went by the wayside--even as the arts endeavor flourished. That is, until Dobroslavic and Schaffer came to the board of Harrington's arts organization seeking an affiliation when their co-op gets off the ground.

Thus, the Alliance for Community Maintenance Enterprises was born, with the arts group and co-op falling under the umbrella organization as offshoot projects.

"We support them 100 percent," Harrington said about the new alliance.

A 2004 survey on the housing needs and preferences of those with disabilities shows that the mothers' dreams for their sons' well-being are shared by many people with disabilities.

Melinda Fritchoff Davis, a research instructor at the University of Arizona Health Sciences Center's Department of Pediatrics, found 60 percent of 1,013 disabled survey respondents in Tucson wanted to own a home, but only 36 percent actually did. Nearly 70 percent said they wanted to live independently, according to the survey.

"There is the choice, or lack of one, about where to live," the survey stated. "Many people with physical disabilities use assistive devices and therefore need an accessible environment. Managing one's life as a person with a disability and often navigating a patchwork system of services is a complicated undertaking.

"Family, friends, community ('livable communities'), long-term supportive services and our physical and social environments all play key roles in the quality of life for persons with physical disabilities."

Dobroslavic and Schaffer are hoping to provide their sons with the means to achieve the "American Dream" of owning their homes. And in doing so, they want their kids to have firm ground under their feet, with individualized care, after their parents are gone.

"It's the next natural step," Dobroslavic said. "We put people in institutions; we took them out. We had them in group homes. Now, there's a movement to take them out of the group homes, to individually design their living arrangements. That's where we are. We don't have the answers; we would just like to try to do something that might be more of a life."

"And a long-term, sustainable life," Schaffer chimed in. "We're getting older; I'm 10 years older than Dar. We know we're not going to be here forever for our kids."

Lately, the women have been busy developing a management structure, drafting a Web presence and writing bylaws during weekend sleepovers, in an effort to create a tight-knit, democratically governed community.

Dobroslavic has likened the community to the housing situation enjoyed by the lusty ladies in The Golden Girls. "It wasn't perfect," she said, "but they each used their time, talent and resources to the best of their ability. That's why I call this 'the intelligent experiment.'"

Indeed, Dobroslavic has done reams of research into similar housing arrangements that are becoming increasingly common across the country.

"We're not the only target population that has these scenarios," Dobroslavic said. "Look at single seniors--who knows this person? I call it the Cheers model: You want to be where people know your name. But in our guys' cases, we want to be around people who know more than just your name."

She's also drawn inspiration from various types of cooperatives in which people come together and form a community to meet any number of needs, from health care to fair prices for farming goods.

The independent International Co-operative Alliance, a Geneva, Switzerland-based nongovernmental organization that was formed in the waning years of the 19th century, defines a cooperative as an "autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations through a jointly-owned and democratically-controlled enterprise."

Some 25 to 40 percent of people in the United States belong to one co-op or another, the organization estimates, with more than 800 million people worldwide counting themselves members. The ICA claims about 30 U.S. co-ops enjoy revenues of greater than $1 billion. Dobroslavic and Schaffer's co-op promises to be far more humble, but it goes to show that co-ops can be big businesses, despite shunning the top-down hierarchical structure of your standard fat-cat corporation.

Furthermore, the United Nations General Assembly, in a resolution from Dec. 23, 1994, was remarkably fulsome in its praise of cooperatives as an essential tool for the betterment of humanity.

"Co-operatives in their various forms are becoming an indispensable factor in the economic and social development of all countries," Resolution 49/155 stated, "promoting the fullest possible participation in the development process of all population groups, including women, youth, disabled persons and the elderly."

Meanwhile, cooperative living arrangements, also called "intentional communities," have been around in some form or another as long as humans have. But more recently, in the past four decades or so, these communities have gained acceptance as a way to live with dignity in what some perceive to be an increasingly bureaucratic, dehumanizing world.

Ira Rosofsky, a nursing-home psychologist and author of an upcoming book on caring for the elderly, noted in a January opinion piece in The New York Times that psychologist George Fairweather created living arrangements called "community lodges" for psychiatric patients wanting to live away from hospitals in 1963.

"Groups of patients would pool their government benefits, buy or rent lodging and hire professionals to meet their special needs," Rosofsky wrote. "Today, lodge programs modeled on this concept exist across the nation, enabling psychiatric patients to have control of their own lives."

Similar arrangements called "cooperative housing" are springing up across the country, with "over 1 million families in the United States of all income levels" becoming homeowners, according to the National Association of Housing Cooperatives. In these organizations, people pay a monthly charge to cover operating expenses for the cooperative, which actually owns the building. Decisions affecting residents are reached democratically.

In the cooperative envisaged by Dobroslavic and Schaffer, everyone will share in the work and together will reap the rewards of that work. In doing so, they hope to encourage empowerment, solidarity and mutual responsibility.

If this sounds like a warm and fuzzy hippy commune from the '60s, that's because it kind of is--with a twist.

The state uses "a model that doesn't seem to sustain relationships," Dobroslavic said. "The only thing that sustains people is relationships. So we want to build a community of relationships."

What will become the ACME Co-Op wasn't much to look at days before Dobroslavic and Schaffer were slated to close the deal on May 10. A couple of windows were broken and taped up, and some of the mosquito screens desperately needed changing. Trash was caught in the overgrown brush near the chain-link fence on the western side of the backyard.

But the potential for something much more grand exists, with the right vision and a sufficient amount of elbow grease. The interior of each unit is comfy, and a line of palo verdes in front of the apartments weeps yellow blossoms whenever the wind blows.

On a tour of the complex some weeks before the closing date, Schaffer and Dobroslavic took out a page from a home-decorating magazine that showed a brightly colored, contemporary porch. They want plants, murals and mosaics. In short, they want a home.

But at the same time, they want there to be measures allowing for a certain amount of control over their sons; Schaffer's son, in particular, can sometimes behave so erratically that he endangers himself.

"We want to be able to contain people, but without it looking like a prison," Schaffer said. To get an idea of what's already out there, a developer sent Schaffer on a tour of a similar community for HIV patients and their families, and that's when she realized how wrong (read: institutional) some of these places can be. Snarling dogs, barbed wire, guard towers or anything reminiscent of a penitentiary are out.

"A low wall is all that is needed, because our guys don't jump," Schaffer said. Other measures will be determined through collective decision-making with their co-op partners. According to a bulletin announcing the co-op's formation, they want those partners to realize a simple maxim: "What happens to someone matters to everyone."

To get other people to sign on, Dobroslavic and Schaffer may have to be careful about how they advertise their co-op. They need to avoid running afoul of restrictive fair-housing laws, according to Sandy Fagan, deputy director of the Southwest Fair Housing Council.

When one of the apartment units is open, there's not much the co-op can do to prevent a person without a disability from moving in if that person meets standard criteria for judging whether someone will be a good tenant. In effect, the co-op can't discriminate against someone for not being disabled.

She said Dobroslavic should use word of mouth and work the phones to let people know about their community. Taking out ads in a newspaper or using some kind of housing professional to move the units is probably a bad idea, she added.

Zaharia, the DDD district administrator, said he has staff members sitting in with the co-op's planning group to give advice, but they aren't involved in the governing process. He's cautiously optimistic about this unique entity.

"We're very supportive of the goal they're trying to accomplish," he said. "The fact that it's family-driven is at the heart of everything we try to do at the division. The family-driven programs are the best, because very often they're the experts, and not us. ... It's exciting to see families kind of grabbing the bootstraps on their own and moving forward."

But, Zaharia added, the DDD is going to take a wait-and-see approach to the co-op. Because it's such a new and comprehensive proposal for long-term care, there may be conflicts with state law or other difficulties that aren't being noticed during the birthing stage.

"You can always imagine how things would kind of stray into the ditches and cause issues," Zaharia said. "One of them is continuity of governing-board members. It's a problem any nonprofit group usually has, and that is that the founders may break away with future generations of parents who come in on it. That's always a succession issue with these nonprofits."

Issues or not, the two women are trudging forward. Dobroslavic is planning for her son to move in full-time as soon as everything is settled, while Schaffer, who is not the primary caregiver for her son following a divorce, is aiming for him to be able to stay on weekends.

And Dobroslavic hopes this article will be a wake-up call to parents in similar situations, who'll give the co-op model serious consideration.

"We didn't think we could do this," she said. "But we realized with our limited resources that we could, and that we wanted to. That's the message that we want to bring to the community: We didn't think we could do this, and if you don't think that you can, please reconsider. You can do this."

As for the state government, Zaharia said the DDD will strive to talk through any barriers that may arise.

"Everything else being equal, the family is our best, most compassionate, effective service-delivery system," he said. "These families are designing what they want for their adult children well beyond, obviously, their lives--and that's a good thing."

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