Sunday, July 26, 2015

Molly Parker

CARBONDALE – Twenty-five years ago today, George H. W. Bush signed into law the Americans with Disabilities Act, one of America’s most sweeping pieces of civil rights legislation, aimed at achieving inclusion and accessibility for the millions of people living with disabilities.

The year was 1990, and Matthew Fred was 14. He doesn’t remember hearing anything about the law as an adolescent and had never even interacted with anyone with a known disability growing up in a rural town an hour south of Chicago.

It’s a cliché to say that life can change in an instant, but it’s a well-worn phrase because it’s also true.

Six years after the law was signed, Fred, at age 20, set out to work around 4 a.m. to his job in a shipping and receiving factory. On the way, he fell asleep at the wheel, and his car rolled several times.

He would never walk again. But he would soldier on.

Fred spent 18 months in rehabilitation, learning to navigate life as a quadriplegic, learning to drive a power wheelchair, learning about rights for people with disabilities, learning about the power of the human body and mind to adapt as the country itself was learning to be more adaptable and accepting.

Five years after Fred’s accident, he moved to Carbondale in 2001 and enrolled at SIU, going on to earn a bachelor’s degree in psychology and a master’s in rehabilitative counseling. Fred said he chose SIU largely because of the campus’s reputation of being accessible and inclusive for people with disabilities.

That’s a campus legacy dating back decades credited largely to former President Delyte Morris’s commitment to build a university that welcomed with open arms thousands of GIs returning from World War II, many with war-related injuries.

The school, he said, was way ahead of its time. Fred, who keeps an active social life frequenting area restaurants and other businesses with friends, said Carbondale officials also have done a good job over the years at making sure the town’s infrastructure is accessible.

“I’ve not found any major obstacles in this town,” said Fred, now 39. “Granted, some sidewalks are better than others. But in general, if you want to get around somewhere in this town you can get there. I drive this chair all over town – literally.”

Fred drives his chair roughly three miles to work every day down sidewalks – and on one short stretch, the shoulder of a busy road – to arrive at his job as an independent living specialist with the Southern Illinois Center for Independent Living.

It’s not perfect, but it’s a pretty easy town to navigate for people living with physical disabilities, he said. Fred, as did others, said it’s important that the city keep in mind that maintaining sidewalks and walkways is not just about aesthetics, but critical for people who use wheelchairs.

Sam Goodin, director of Disability Support Services at SIU, said he was part of a team meeting with City Manager Kevin Baity on Friday to discuss that need, as well as others brought to his attention by students.

Sidewalk maintenance will “be high on our list,” he said in advance of the meeting. “Tree roots on sidewalks are problematic,” he said. “People have also found places where we need brail signage on elevators, so people who are blind know what button they’re pressing.”

Goodin said his department works with about 400 students who are living with various mental, physical or intellectual disabilities, providing support services and adaptive equipment. Goodin said he’s currently exploring the possibility of adding captioning to the Jumbotron at the SIU arena to accommodate people who are deaf or hard of hearing. Major events utilize sign language interpreters but not everyone, particularly the newly deaf, know sign language, he said.

Helping to continue the tradition of encouraging students living with disabilities to choose SIU, a former SIU student who went on to have a high-level position with IBM, along with his wife, donated $1.3 million to the university in 2013 to support other SIU students with disabilities.

“The Greenwoods left a powerful legacy by supporting the institution that welcomed him in the ‘60s, well before the Americans with Disabilities Act required campuses to be accessible,” said former Chancellor Rita Cheng, in a news release. “Jim Greenwood remained a Saluki throughout his life, and we couldn’t be prouder or more grateful that he and Martha are making it possible for other students with disabilities to attend SIU.”

The Jim and Martha Greenwood Fund, created through the Greenwoods’ estate, provides scholarships for students with disabilities who are studying science, engineering or computer science. For the 2014-15 school year, two scholarships totaling $25,000 were awarded. Applicants must have a demonstrated physical disability as documented by the Disability Support Services office.

For all the advancements made in the country for people with disabilities in the last quarter-century, there’s still more to be done, said Tony Paulauski, executive director at Arc of Illinois, which represents people throughout the state living with intellectual or developmental disabilities.

“I can clearly say the ADA has had a tremendous positive impact nationally for people living with disabilities, including people with intellectual disabilities. That’s not to say that everything is perfect, and we do have a ways to go.”

Paulauski said that he sees one of the fights of this generation being about inclusion for people living with disabilities in living settings and the workplace. In 2015, the state should be long past its policy of warehousing people with disabilities in state-run or private, state-funded institutions who are capable living in the community. But state policies still fall short in funding for community-based care for people with disabilities versus them living in an institution designated for people with mental, developmental or intellectual disabilities, even though community care, on average, is a more appropriate and less expensive alternative, he said.

Also, he said, the ADA, in addition to mandating structural accessibility, also speaks to access to employment and the rights of employees to request reasonable accommodations in the workplace, be it in terms of reading equipment for the blind, or flexible scheduling for someone who has a mental illness. Unemployment rates for people with disabilities remain high nationally, he said, around 70 percent, and as high as 90 percent for people with intellectual disabilities.

Barry Taylor, an attorney and vice president for civil rights at Equip for Equality Illinois, a statewide organization that is federally mandated to provide free legal services to people with disabilities, seconded those concerns, and said the push for better policies and more informed employers will continue long past the 25th birthday of the ADA. The organization has offices in Carbondale, Springfield, Moline and Chicago.

In 2013, former Gov. Pat Quinn signed into law an Employment First decree that Taylor and others are in the process of helping figure out how to best implement. Among other things, it looks at state funding needs for job coaches that can assist an employee with a disability in adapting to or learning a new job.

His agency also continues to push for more integrating living options for people with disabilities, after having settled three lawsuits that were filed during the administration of former Gov. Rod Blagojevich on behalf of people with mental, physical and developmental disabilities who were living in private, state-funded institutions or nursing homes because they could not access services at home. These people could otherwise live more fulfilling lives in the community with access to Medicaid “waivers” that provide a variety of in-home health assistance, the lawsuits alleged, contending the state was violating the ADA and the U.S. Supreme Court’s Olmstead decision that says state services must be offered in the most inclusive setting possible. Community-based care is cheaper on average, but the nursing home lobbying has been historically strong in Illinois and other states.

Officials from the state and organization have signed consent decrees related to all three cases, and some 7,000 people since 2010 have been able to access these Medicaid services in the community, Taylor said. That number continues to grow daily, he said.

“The political nature of Illinois is people who fund these institutions have much more political power than people with disabilities,” Taylor said. “The ADA gave people the tools to result in systemic change that would not happen voluntarily by the state.”