The Zero Hour

Anne Barnwell, whose nonprofit serves clients with epilepsy, calls the governor's new budget "pretty grim stuff"
Dawn Villella

The Reverend Eileen Nelson doesn't remember much about the multiple seizures that landed her in a public hospital in Chicago a few years back. Not where she was. Not what she was doing. That's how it goes, she explains, when you've had a bad seizure. And though Nelson had been afflicted with epilepsy since childhood, this episode was far worse than usual--a reaction, she believes, caused by a combination of anti-convulsants and other medications prescribed by a negligent doctor.

The hospitalization came during a difficult chapter in Nelson's life. After graduating from the Lutheran School of Theology in Chicago in 1987, she struggled as she, in the pastoral vernacular, "waited for a call." Time and again, she was rejected by prospective parishes because her illness kept her from qualifying for a driver's license. Even inner-city churches with access to mass transit were reluctant to hire a pastor without a car. She allows, too, that she may have scared some potential employers off. Maybe she disclosed too much about her condition during job interviews; some people, she says, still get nervous at the mention of epilepsy, let alone the unnerving spectacle of a full-blown grand mal seizure on the sanctuary floor. In any event, after working at a string of menial jobs, a deeply discouraged Nelson moved back into her parents' St. Louis Park home, hoping to get her seizures under better control. She was also "ready to throw in the towel" on her professional aspirations.

Last summer--11 years after graduating from seminary--Nelson was ordained as an associate pastor at Lake Nokomis Lutheran Church. A polite, primly dressed woman of 47, Nelson says these are by far the happiest days of her adult life. Every six weeks she delivers a sermon to the 200-strong congregation at the South Minneapolis church, where she also runs the neighborhood outreach program. On the side, she serves as a chaplain at two Minneapolis nursing homes.

Nelson says she owes her livelihood to her enrollment in the SEARCH program, a decade-old social service agency run under the auspices of the St. Paul-based nonprofit People Inc. "When I think where I'd be if it weren't for SEARCH, oh my gosh," Nelson says, trailing off before choosing her next words. "They helped me redevelop my self-confidence. I was given the tools to assess my epilepsy in a realistic way--to explain my capacities and disabilities."

Over at the SEARCH offices--two converted efficiency apartments at the Cedars, a public-housing highrise in the Cedar-Riverside Neighborhood of Minneapolis--these are not happy days. Clutching a manila folder bulging with some 30-odd testimonials from SEARCH graduates and their families, director Anne Barnwell has little trouble producing evidence of the program's success in helping clients with severe, so-called intractable epilepsy. The lives of those who suffer from this more intense form of the condition--about 25 percent of all epileptics--are often marred by isolation, dependence, and, at times, serious psychiatric and cognitive disorders, explains Barnwell. SEARCH, as the letters attest, made an enormous difference in a majority of clients' lives by teaching them how to manage their condition, get jobs, and find housing.

Barnwell has been busy assembling the testimonials since last month, when she learned that all funding for SEARCH, some $230,000 annually, has been slated for elimination under Gov. Jesse Ventura's proposed 2000-2001 budget. "The program is over. It's history. It's toast," says Barnwell--unless the Legislature votes quickly to restore the funding.

According to the Minnesota Council of Nonprofits, SEARCH is just one of more than 325 private nonprofit organizations set to be slashed, by an "unprecedented" total of some $60 million, under the proposed Ventura budget. "It's pretty grim stuff. We haven't seen these kinds of cuts even when there were deficits," says Marcia Avner, the council's public policy director. "There was no discussion with any of the groups that were affected. Some of them didn't even know about the cuts until we put our report together."

"It's a ludicrous situation," Avner adds. "We started out this legislative session knowing that we had a $3.2 billion surplus. Legislators thought the forecast this week would be an additional $200, maybe $400 million. Well, it's over $700 million. It seems to me that this is not the time to cut community-based self-sufficiency programs."

Pam Wheelock, Minnesota's commissioner of finance, says the cuts are the result of Ventura's commitment to tax relief and increased education spending. "It's not that [SEARCH] is not a program with some benefit," she says, "but it's just that there are higher priorities that the governor decided to fund." Still, the Ventura administration appears to have taken a hard-line stance against funding service nonprofits, a position that doesn't bode well for people like Anne Barnwell and her clients. A February 9 memo from Wendy Wustenburg, the governor's government relations director, flatly instructs state commissioners to "just say no" to pleas for restored funding from programs disabled by the cuts. The governor's budget book offers a more pointed credo: "We will not serve the few at the expense of the many."

In the nonprofit world, however, service providers remain guarded in their criticism of Ventura. They are, no doubt, wary of offending him. And, they say, the governor might be more inclined to support nonprofits were he aware of their virtues--particularly regarding programs that emphasize two favorite Ventura themes: self-sufficiency and cost control. According to Barnwell, SEARCH has saved the state some five million dollars in the course of the past decade. She arrived at that figure through a series of calculations based on employment histories, housing arrangements, and, most significant, the reduced number of medical emergencies. After leaving SEARCH, Barnwell says, clients' emergency-room visits--which cost an average of $1,500 each--are cut in half.

Other numbers tell the story as well. Of the 82 people who have passed through SEARCH in the last ten years, all but two are now living in their own apartments--a remarkable accomplishment, considering that all clients who enter the program are either homeless, staying with family, or living in collective housing or state hospitals. Moreover, Barnwell says, 43 percent of the graduates have found work following their enrollment (up from 15 percent upon entry in the program). An additional 29 percent went back to school (up from zero).

Dr. Robert J. Gumnit, an epilepsy expert at the Minnesota Comprehensive Epilepsy Program (MINCEP) in St. Louis Park, calls SEARCH "a pioneering program"--the first of its kind the nation, and the only one of its kind in the state. Advances in epilepsy treatment, in conjunction with individually tailored support programs such as SEARCH, Gumnit says, mean that those suffering from epilepsy no longer get automatically "warehoused" in institutions or group homes--a fate that contributes to elevated rates of depression among intractable epileptics. "If you think living in a residential facility is fun, try it for a couple of nights," he suggests. While Gumnit acknowledges that crunching cost-benefit numbers can be tricky, he has little doubt that SEARCH saves the state money in the long run.

That achievement, says the Council of Nonprofits' Avner, is often the case with nonprofits. Some organizations, particularly economic development groups, can easily demonstrate impressive returns on the state's investment, she points out. Still, Avner says, many of the nonprofits that rely heavily on state funding will most likely shut down come the end of the fiscal year--thanks to a state Legislature that appears unwilling to tap the surplus. "The leadership on the Republican side in the House has said, 'We're giving it all back,'" Avner says. "So even Republicans who want to see money restored can't dip into the rebate money."

Within the past few weeks, Sen. Linda Berglin, a DFLer from Minneapolis, has proposed legislation to restore SEARCH's funding. But given the current political atmosphere at the Capitol, Berglin says she's uncertain about the prospects for SEARCH. And she's puzzled by the Ventura administration's posture toward nonprofits, like SEARCH, that aim to decrease reliance on government services. "There's nothing to indicate the rhyme or reason for this," she says.

From her office at Lake Nokomis Lutheran Church, Rev. Nelson echoes that sentiment, though she posits it delicately. "If you want to put people back to work, SEARCH is a program you want to keep. Maybe the governor just has a lack of information," she says. "I'm certainly paying more in taxes this year than I did last year." Looking out into the courtyard steeped in snow, Nelson mentions that she is the only church employee who made it to work today. After all those years of waiting for the call--all those years of being told she couldn't serve as a pastor because she couldn't drive--Nelson arrived at work the old-fashioned way: She walked.

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