Says Starkloff: "The biggest thing the ADA has done is that it has made society aware of the real problems out there for the disabled citizens. The problem is that our society has not been prepared for a minority group that has been institutionalized and discriminated against for so long."

Only the beginning

The disability act outlaws discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation and telecommunications.

What that translates into is the right of the disabled individual to use a government service, such as voting in a polling place, filing a court document or applying for a drivers license without barriers. People with disabilities also are entitled to enter a restaurant, order dinner and use the restroom without barriers. They have the right to ride a public bus without barriers.

The law did not create special privileges for people with disabilities. It gave them the right to have access to the same services as those with disabilities.

Jim Tuscher, vice president for public policy for Paraquad, was on the White House lawn the day former President George Bush signed the bill.

"It was a proud day," Tuscher says, noting how long and hard disabilities rights advocates pushed for its passage.

But their excitement was tempered.

"In our hearts, we knew that the real work would have to begin," he says. "We're still fighting the battle, though we're fighting from a different place. Now, we have standing under the law. Before, we had nothing to fight with.

"Is it perfect? No. Is it better? Way, way better."

Blind people with guide dogs are still turned away from restaurants, says John Wodatch, chief of disability rights for the U.S. Department of Justice. Although the U.S. Department of Transportation says 80 percent of the nation's buses are accessible, paratransit is still unreliable and that doesn't add up to equal opportunity, Wodatch says.

"People are beginning to understand better that this is a civil rights issue," he says.

Law is complaint-driven

In her report on the ADA's 10th anniversary, Attorney General Janet Reno cited progress in the past decade because of the act. Among the advances were:

- United Artists Theatre Circuit Inc. agreed to make parking, entrances, restrooms and seating accessible at more than 400 theaters.

- Illinois dropped discriminatory provisions in its police and fire pension code that had excluded disabled officers and firefighters.

- The National Collegiate Athletic Association agreed to modify policies that excluded students with learning disabilities from competing.

- City Utilities of Springfield, Mo., agreed to make its building and services more accommodating.

All of these changes resulted from complaints to the Department of Justice, underscoring one of the criticisms of the law.

"It's like trying to kill mosquitoes with an elephant gun," says Bob Kafka, a national organizer in Texas for ADAPT, a disability rights group with roots that date back to Denver in the 1970s.

The law is largely reactive. It is driven by complaints and lawsuits rather than aggressive enforcement through regular inspection. St. Louis city health inspectors, for instance, perform regular checks of restaurants for compliance with health codes. But city building inspectors are required to check commercial properties for accessibility only if the buildings are undergoing a change of use, substantial rehabilitation or new construction.

Of 13,000 complaints filed since 1990, the Department of Justice filed 202 lawsuits, settled more than 500 cases and sent thousands through the department's mediation program.

Filing a complaint might take an instruction manual.

The Equal Employment Opportunity Commission handles complaints relating to Title I of ADA: employment. But if it's a complaint about buses, it would be filed with the Federal Transit Administration within the U.S. Department of Transportation. And if it's a complaint about inaccessible commercial buildings, it would be filed with the U.S. Department of Justice.

People can also file complaints on the state and local levels. ADA coordinators in St. Louis and St. Louis County say they receive telephone calls from outside their respective jurisdictions, from throughout the area and states beyond. The National Council on Disability, citing disjointed federal enforcement of the ADA in a recent report, recommends more collaboration between agencies with the Department of Justice taking the lead.

"Ten years after the fact, there's still a lot of confusion about who to contact," says Deborah Dee, commissioner for the St. Louis Office on Disability.

In addition to the complexity of the complaint process, the regulations themselves are intricate. Pages and pages of guidelines include diagrams and measurements for everything from making a bathroom accessible to setting the height of elevator buttons above the floor.

Yet, while the ADA is quite specific on building design, its definition of what impairments are covered is vague. Disability is defined, not by diagnoses, but by how one performs daily living tasks. The vast spectrum of disabilities, each band with its own needs, sometimes is divided.

Because of that, the disabled community doesn't speak with one voice, and that holds it back, Dee says. And sometimes disabled people won't speak at all.

"I don't think we make enough noise to show we have an impact," Paraquad's Starkloff says.

Progress means choices

Nursing homes and other institutions used to be the only option for disabled people, who were considered incapable of deciding what was best for themselves.

"I was in a nursing home for 12 years," says Starkloff, who uses a wheelchair because of a car accident. "If I moved, I lost financial support. So, I spent five years there until I was able to raise enough money to go into the community. I lived in a nursing home because I needed help getting out of bed. I wasn't there for health care reasons."

Today, he hires a personal care attendant.

The ADA bolstered the independent living movement. That movement seeks to empower people with disabilities to move out of institutions and into the house next door.

Last year, the U.S. Supreme Court ruled on the issue in a case known as the Olmstead Decision. The court said that unjustified institutionalization of a person with a disability who can live in the community is discrimination. Missouri is among the first states to apply Olmstead language to the state budget, allowing Medicaid money to follow a person into the community.

Medicaid guidelines were relaxed, making it possible for people with disabilities to work and earn income without fear of losing their benefits.

Still, the nursing home lobby has proved to be a considerable foe to the independent living movement, says Mike Auberger, a Denver-based disability rights advocate with ADAPT.

Nursing homes have a lot at stake. Nationwide, long-term care institutions received $25.9 billion in Medicaid funding last year, compared with $622 million in Medicaid funds for home- and community-based services.

Since January 1999, the nursing home industry has given more than $2 million in campaign funding to federal candidates.

But the nursing home industry doesn't foresee Olmstead having a big impact.

"There's an expectation that there are a large number of people in care settings that don't belong there," says Earl Carlson, executive director of the Missouri Health Care Association. "I'm sure there are people in nursing homes that could be cared for at home. But it's so small that it's not going to have a very big impact."

In any case, disability rights activists say communities aren't ready to receive people with disabilities.

The services aren't there to support them and accessible, affordable housing is in short supply, they say. Among the cities considered most progressive by rights advocates are Berkeley, Calif., Denver and Los Angeles because of their community-based services.

"A city's success is the transit system," Auberger says. "You make the transit system accessible and you can get higher education, jobs, recreation. You can do all of that."

But you can't pass a law and change society, says David Newburger, a civil rights attorney in St. Louis. The big political movements of this generation -- civil rights, women's rights and Vietnam war protests -- were characterized by mass marches and charismatic leaders. But they also ignited great social change, raising the issue of racial and sexual discrimination to a broad, public consciousness, he says.

"We haven't had that kind of movement with people with disabilities," Newburger says. "And education is a lot slower than marches."

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THE SERIES

Each day, look for more on the DisAbility Project and these reports:

SUNDAY

Accessibility: Ramps to restaurants, curb cuts in sidewalks and bus lifts have opened up many avenues for people with disabilities. But how far has the St. Louis region come?

MONDAY

Employment: Unemployment is higher for people with disabilities but technology is helping them become independent.

TUESDAY

Transportation: The St. Louis area public transportation system that carries many people with disabilities to work and recreation also turns away thousands of requests for rides each month.

A Special report

E-mail: jlafleur@post-dispatch.com
Phone: 314-340-8296