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Family Fights For Their Disabled Daughter's Job Choices, But Their Lawsuit Could Eliminate The Program They Want.

The Capital Times :: FRONT :: 1A

Saturday, December 11, 2004
By David Callender The Capital Times
HELENVILLE, WIS.

At the time, school officials weren't used to the idea that people with disabilities belong in the mainstream of society, she says.

But when Jessica graduated from high school two years ago, she had not only made friends but found a job working five days a week at two Lake Mills businesses with the help of a state-funded job coach.

These days, though, Peggy Schwartz feels like she's back fighting the same battles she faced when Jessica was a little girl.

In a case that could have implications for human service programs statewide, Schwartz is suing Jefferson County, claiming that those limits violate the Americans With Disabilities Act.

She contends that the county discourages adults with severe developmental disabilities from finding work in the community by capping the amount the county will spend on each person.

The spending caps and a near-monopoly arrangement with one private contractor skew county services toward placing disabled workers in sheltered workshops where they remain segregated from their able-bodied peers, she charges.

"I fought forever for Jessica to be part of the community" when she was in school, Schwartz says. "I can't believe I have to go through it all over again now that she's graduated."

While they decline to comment specifically on the case, Jefferson County officials respond that they have to control costs or else a few high-needs people will squeeze out all the money available to county residents.

They say they try to give disabled adults a range of job options but have to ration some services - such as job coaching for the severely disabled - in order to avoid waiting lists.

"We have to make sure that every developmentally disabled person in this county gets services," says Tom Schleitwiler, director of the Jefferson County Human Services Department.

He argues that, because of the county's commitment to avoiding waiting lists - and without hitting county taxpayers up for more money - the department has to work with the available state and federal funds "as best we can."

To Schwartz, who wants to replace the current workshop system with a more community-based one, that's unacceptable.

"This is all about choice and the lack of choice," she says.

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Mother's choice: Jessica has a genetic defect that causes autistic-like symptoms, making it hard for her to concentrate on a task for long periods of time.

Her disability causes her to speak in a high-pitched squeak, which can be something of a surprise to new acquaintances.

And her attention to details that others might not notice means "she can be pretty funny sometimes," says her younger brother, Nick, 18. "But I've never had a friend who hasn't come to love Jess."

Adds Peggy Schwartz, "I'm amazed by the number of people who say they enjoy meeting her," especially at work. "They say she really makes their day."

When Jessica was in high school, she received the help of a job coach for four hours a day, five days a week, to join her at her two jobs in Lake Mills, where she sorted hangers at a local cleaners shop and separated egg cartons at an egg farm.

As a student, Jessica's job coaching services were paid for by the school district. Once she graduated, she was briefly eligible for state Division of Vocational Rehabilitation funding.

Then, about two years ago, Jefferson County started paying the bills directly. And that's when the problems started.

Peggy Schwartz wanted Jessica to stay on the same schedule in the same jobs she'd had in high school.

But the county determined that Jessica could either get four days a week of job coaching instead of five - a 20 percent cut - or she could go to work in a sheltered workshop where virtually all of her fellow employees would also be disabled.

In Peggy Schwartz's eyes, that wasn't much of a choice.

She appealed the county's decision to a state arbitrator and lost, then decided to sue the county.

The Schwartzes and two other families with children in similar straits tried to file the case as a class-action suit on behalf of all developmentally disabled people in Jefferson County.

A judge refused to grant class-action status earlier this month, but the families are still hoping that a favorable ruling will open the door to more such cases.

While the lawsuit is pending, Schwartz and her husband, Fred, decided to keep Jessica with the same job coach and pay for the fifth day of service - about $300 a month - out of their own pocket.

"We're spending the money for her to have the lifestyle we think she should have," Schwartz says. "I'm committed to Jessica having a community-supported life in the place where she grew up."

To Jessica, what she likes is the friends she's made on the job and the pride that comes from getting a paycheck every other week, even though it's far less than the check of the job coach who watches her work and keeps her on cue. She earns $3.75 hourly at the egg farm and $2.07 hourly at the cleaners, while her coach earns $10.25 hourly.

"I'm a fast worker. I work hard," she says, adding that one of her bosses tells her she does such a good job that "I'm going to be rich and famous someday."

*

High-stakes suit: The Schwartzes' lawsuit is based primarily on two provisions of the Americans With Disabilities Act, says their attorney, Robert Pledl.

The first holds that people with disabilities must receive services "in the least restrictive setting."

That provision has led to the movement of millions of disabled people out of state-run institutions and into community-based residences; it also has led to the "mainstreaming" of disabled children into regular classrooms across the country.

The second, lesser-known provision holds that people with disabilities can't be discriminated against on the basis of the severity of their disability.

In other words, services that are provided to one mildly disabled person can't be denied to another, more severely disabled person just because they would cost more, Pledl says.

While the Americans With Disabilities Act has been on the books for more than a decade, there has been few major cases relating to access to employment services, says Peter Blanck, director of the Law, Health Policy and Disability Center at the University of Iowa and an authority on the disabilities law.

Citing recent U.S. Supreme Court decisions, however, Blanck warns that if Jefferson County "is restricting access to supported employment (the general term for job-coaching services) on the basis of disability severity, that could be problematic under the ADA."

Blanck's colleague, James Schmeling, adds that many counties nationwide are grappling with the choice between supported employment and sheltered workshops for people with developmental disabilities.

"Many counties provide little or no (supported employment) services rather than equivalent services, so the option might be that they totally eliminate that class of service rather than provide it to everybody," he says.

The Schwartzes' lawsuit argues that the county has artificially - and illegally - capped how much it will spend on employment services for those with severe disabilities, a charge that county officials deny.

Schleitwiler, the county's human services director, declined to answer questions directly relating to the case.

But in an affidavit filed with the court, he said the county does not, "as a matter of routine practice, limit the services or funds available to individuals receiving long-term supported employment services," adding that once the county has put a service plan in place, it "generally places no limits on the services provided."

He noted, however, that "in the rare instance when an individual rejects the services offered by the county through a vendor ... or when the projected costs of the services otherwise become an issue, the county must assess the requested services against its available resources."

That appears to be what has happened in Jessica's case, but the county hasn't yet said how much it would spend on providing her with a job coach.

In general, Schleitwiler says, the county "can spend up to what's available" through the federal/state Community Integration Program, but it has ruled out going to county taxpayers for additional funding.

*

One big vendor: But even more than money, the case is really a dispute over philosophy.

The Schwartzes, like many families whose disabled children grew up in the era of mainstreaming in the classroom, want Jessica to work in with her able-bodied peers, rather than be segregated in a sheltered workshop.

The Schwartzes contend that the county's relationship with Fort Atkinson-based Opportunities Inc., or OI, has created a near-monopoly on job programs that tilts the entire system in favor of the sheltered workshop that OI runs.

Although the county contracts with other supported employment agencies, and OI even operates its own job-coaching services, the Schwartzes argue that the scale of those other options simply isn't big enough to be cost-competitive with OI's workshop, especially when it comes to providing community-based job services for people with severe disabilities.

Schleitwiler admits that Opportunities Inc. has an edge over other competitors.

"Because of the long-term relationship and evolution we've had (with them) as public-private partners for 35 years," and the funds that OI raises in the community and from its contracts with private businesses, county clients who go to OI for help "can get more bang for the buck" than if they go to other agencies, he says.

The county is expected to pay OI more than $1.7 million this year, or about a fifth of the county's total budget for contract services for people with disabilities.

Opportunities Inc.'s employment program serves about 320 county clients with developmental disabilities.

According to Gina Groskopf, OI's director of services, about 60 percent work at the agency's sheltered workshop, a figure that has stayed fairly constant through the past five years.

Schleitwiler defends OI as being different from the stereotype of sheltered workshops where people with disabilities don't do meaningful work and have no contact with the outside community.

"This place does more business with non-disabled people than anyplace and pairs disabled and non-disabled people to work together. They're doing competitive, quality-controlled contract work and packaging and all kinds of things," he says.

During a recent tour of the facility, officials showed off those assembly lines to a reporter from The Capital Times.

For those with severe disabilities, most of the jobs involved repetitive tasks, such as putting small automobile parts together. Workers appeared to work either on their own or in small groups without much interaction with non-disabled workers, except for their supervisors or lead workers.

Those with less severe disabilities work on the agency's packaging line on tasks such as sorting and boxing cans of cat food. Although they worked alongside able-bodied temporary workers, some of those other workers appeared to speak little or no English.

Barb LeDuc, OI's president and CEO, says the agency prides itself on its diverse work force, which includes both English- and non-English-speaking workers, and both disabled and non-disabled workers. About one-third of the agency's assembly-line employees do not have disabilities, she says.

Groskopf says the remaining 40 percent of OI's developmentally disabled clients work in supported employment jobs where they receive job coaching and other community support.

Most of those in supported employment tend to be less severely disabled than those in the sheltered workshop. And she acknowledges that for many of them, transportation is a problem because the agency has no way of getting them to their jobs.

She maintains, however, that decisions about which clients get each type of service are based on state rules, which hold that supported employment is a "time-limited" service intended to provide a disabled employee with the skills they need to work.

Those rules also state that the coaching is meant to "fade out over time," she says.

"If somebody needs 100 percent (job support), 40 hours a week (indefinitely), we would not see that as a good match for that person on a job," LeDuc says.

But OI officials and Schleitwiler maintain that, as much as possible, people with disabilities and their families are given a choice between the workshop and supported employment.

Groskopf said many of the families who work with Opportunities Inc. believe the independence and integration offered by real-world jobs are overrated.

They would rather see their loved ones working with others who have similar disabilities in a more supportive environment, she says.

"You can talk integration, but does that mean that somebody's isolated in the bottom of the state building with a one-on-one aide (working) and is not integrating?" she asks. "I'm not sure that's really in the best interests of the consumer."

Groskopf says that in her annual surveys of the agency's sheltered workshop clients and their families, "what comes through loud and clear (from the clients) is, 'I have friends. I like being on break time with my friends. I like my supervisor. My supervisor makes me feel wanted. They make me feel proud of my work.' "

She bemoans a tendency by some in the disability rights movement to promote integration over other considerations.

"It really raises my hackles when people in the disability community say people with disabilities cannot be friends with other people with disabilities nor should they be around them," she says. "That's a pretty strong statement. People should be able to value each other and work with each other and not feel bad about it if it's in the right environment and that's what they're choosing."

Peggy Schwartz disagrees with that conclusion.

She points to a Colorado study which found that as the number of developmentally disabled people with experience in community-based jobs increased, the number of those seeking to stay in sheltered workshops declined.

Schwartz acknowledges that she's fighting an uphill battle in Jefferson County, in part because of the strength of the relationship between the county and Opportunities Inc.

"People have said to me, 'Why don't you just move?' But that would fly in the face of everything we've done for her in school, everything we've done for her life. We're not asking for other people to give up what they have. We're just asking for a choice."

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