By Kevin McKeough, Anne Burgeson and Kathleen Ziemer
Illinois Attorney General Lisa Madigan observed that “at almost any moment, any of us could be living with a disability, whether through our life circumstances or as we age. This is an issue that is personal to all of us, whether we realize it our not.”
Madigan the was the featured speaker at the Rush ADA 25 Symposium, held on Oct. 6 at Rush University Medical Center. The event celebrated the 25th anniversary of the Americans With Disabilities Act, which became law on July 26, 1990.
She was among more than a dozen disability rights leaders who shared their expertise with an audience of more than 100 Chicago area health care and disability rights leaders. Rush held the symposium to provide them with information and guidance about how to make programs and policies more inclusive of individuals with disabilities. As of 2010, approximately 56.7 million people in the U.S. — 19 percent of the population — had a disability, according to the U.S. Census Bureau.
The Disability Rights bureau in the Office of the Attorney General fields 1,200 calls a year and currently has 250 investigations of disability rights violations pending, Madigan said. These problems extend to health care providers.
“We find doctor’s offices that are too high for somebody with a wheelchair. We find doctor’s offices where the examination rooms are too small to access if you are in a wheelchair,” she said. “Shockingly, event the entities where a significant percentage of their clientele have disabilities have not been able to get up to standard.”
Obstacles to care lead people with disabilities not to seek out care, which in turn can cause health problems to go untreated and become life threatening, said Marca Bristo, the co-founder, president and CEO of Access Living, a Chicago-based disability rights organization.
“The physical environment can create the most tangible of barriers,” said Bristo, who is a member of the Rush Board of Trustees and helped author the ADA.
Leading by example
In contrast, Rush long has been recognized as a leader in accommodating people with disabilities. Within a year of establishment of the ADA, Rush established an ADA committee to guide the institution’s accessibility efforts.
This commitment is reflected in the numerous design features in the hospital Tower Rush opened in 2012 that make it accessible to people with disabilities; the recent hiring of an employment recruiter focusing specifically on hiring military veterans and people with disabilities; and many other initiatives.
Rush also promotes the cause of disability rights with its annual Eugene J-M.A. Thonar, Ph.D., Award, which is presented to a member of the Rush community who helps Rush further its commitment of offering opportunities to individuals with disabilities. It is named for a retired Rush professor of biochemistry and orthopedic surgery who himself overcame a disabling illness and become an internationally renowned researcher.
This year’s honoree is Tania Friese, an assistant professor in the Rush University College of Nursing who is a member of the ADA Committee and has a disability herself. Friese received the award in a ceremony at Rush on Oct. 13.
In addition to Madigan and Bristo’s opening remarks, the symposium also included an “Accessibility 101” session providing an overview of disability issues, panel discussions and a concluding lunch keynote address.
During the Accessibility 101 session, Laura Paul, JD, chief if the Disability Rights Bureau in the Office of the Illinois Attorney General, noted the universality of disability. “If you don’t personally identify as having a disability today, you may have aging parents who do, a relative who was born with a disability or someone you know who was in an accident and now has disabilities,” Paul said. “The bottom line is disability affects us all.”
Shestressed the importance of making medical facilities easily accessible to people with disabilities, delving particulars such as exam room tables and grab bars. “Work with your architects to make sure accessibility is a priority,” Paul said. “Make sure it’s a place where people can easily get in and navigate.”
Paul was followed by John Wodatch, whom she dubbed “the Moses of the ADA.” The retired chief of the Disability Rights Section of the U.S. Department of Justice, he put the ADA in the larger context of civil rights during the session.
“The ADA recognized that people with disabilities are entitled to rights, they are entitled to nondiscrimination. Disability rights are human rights,” said Wodatch, who oversaw all interpretation, technical assistance and enforcement of the ADA at the Department of Justice.
Wodatch stressed that effective communications, such as sign language interpreters and video communications equipment, are equally important as removing architectural barriers. He also said that one priority for the next 25 years of the ADA will be increasing opportunities for employment with people for disabilities.
Opening doors and more
Wodatch also was the moderator of a panel discussion titled Facilities Requirements and Best Practices. Organizations must abide by three standards to ensure their building(s) provide accessibility, explained John H. Catlin, FAIA, partner, LCM Architects. Those standards are the Illinois Accessibility Code, the Chicago Building Code (or the relevant city code) and the ADA. Under the codes, building plans for new construction and renovations must undergo inspection before permits are issued.
Catlin noted, however, that all buildings – old and new – must abide by the ADA, which is. Also, ADA is the only act that requires all buildings to be made accessible for people with disabilities. He added that the Illinois Accessibility Code ensures that at least five percent of all individual work areas be accessible, which is not part of the ADA.
Irene Bowen, JD, founder of consulting firm ADA One, provided a framework for organizations to put in place to allow for people with disabilities to express preference, make choices and be given equal opportunity. Bowen’s framework suggests that all organizations have an ADA coordinator who insures accessibility is part of how all business is done; proper technology, equipment, and information for people of all abilities; established policies; self-assessment and training.
Accessibility is about information technology too, observed Robin Jones, MPA, project director and principal investigator of the Great Lakes ADA Center, which provides training and assistance in ADA compliance. For example, the U.S. Department of Justice is revising regulations to establish specific requirements for state and local governments and public entities to make accommodations to their websites for individuals with disabilities.
“To fix a website to make it accessible is as complicated as building a building,” Jones said. “You have to look at the infrastructure first, before you look at what you put into it.”
Making sure their voices are heard
The members of the Disability From the Patient’s Perspective panel noted that progress in health care for people with disabilities has been made thanks to the ADA, but that barriers to care still exist. Moderator Karen Tamley, who uses a wheelchair, noted that she was weighed in a health care setting for the first time just two years ago. Tamley is the commissioner of the City of Chicago’s Mayor’s Office for People With Disabilities.
Judy Panko Reis, MA, MS, recalled that prior to the ADA pap smears and mammograms were more frequent for women with disabilities, resulting in more diagnoses of cancer later. Even today, though, “people (with disabilities) get turned down for appointments all the time,” she said.
A health care policy analyst at Access Living who uses a wheelchair, Panko Reis recommended health care providers screen patients when they make appointments to determine what accommodations they need and seek their input. “We do have experience,” she said.
“Too many of us don’t get services that make us better, and sometimes make us worse,” said Fred Friedman, JD, co-founder of Next Steps, an organization that advocates for the inclusion of people who have experienced mental illness, substance abuse and homelessness are involved in policy decisions affecting their care.
Communicating via sign language with assistance from an interpreter, Benro Ogunyipe cautioned about health care providers using family members to interpret for hearing and speech impaired patients, noting they may misunderstand medical terms and may have difficulty conveying bad news about a medical condition to a family member. For those reasons, Ogunyipe prefers the use of video remote interpreting, which uses web cameras or videophones to provide interpreting services.
Lingering discrimination against people with disabilities despite the ADA also was a theme the Disability Inclusion –Students and the Workforce panel discussion. Ben Lumicao, JD, senior attorney at Allstate Insurance Company and chair of the Board of Directors of Access Living, served as the panel moderator.
“I was told, ‘you can’t be a nurse – you can’t see,’ recalled Karen McCulloh, RN, co-founder and co-director of the National Organization of Nurses with Disabilities. “I said under my breath, ‘you just wait and see.’”
McCulloh also discussed her organization’s work with a community college applicant who was forced to withdraw when the school discovered she had a significant hearing disability. “Sometimes the barrier to admission is based on, ‘you have to see, you have to hear, you have to bend, you have to reach,’ she said.”
This type of discrimination is based on misunderstanding of the true potential for inclusion of people with disabilities in the health sciences and a misunderstanding of the laws, said Lisa Meeks, PhD, assistant professor of medicine and director of medical school disability services, UCSF School of Medicine.
Like Rush, UCSF provides accommodations for students who need them and has several faculty who have disabilities. Meeks said they work to convey to students the importance of being open about what they need.
“I attend every orientation and we very clearly say, ‘if you’ve had accommodations in past, or, if you haven’t and need them, let us know,’” said Meeks, who also is co-founder of the Coalition for Disability Access in Graduate Health Sciences and Medical Education. “’This is not necessarily the time to keep hiding disability. We have built a program to support you. We want to engage with you and ensure that their information will be confidential.’”
The tendency to underestimate what people with disabilities can do extends to the workplace, according to Melissa Reishus, founder of the Sea Glass Group, a firm that specializes in recruiting people with disabilities to work for corporate clients. She recalled a Fortune 500 company being surprised by the number of qualified candidates she was able to provide.
“Many people make these assumptions that candidates aren’t out there, but people with evident and non-evident disabilities are going to college in record numbers and are highly qualified,” Reishus said.
Who gets to judge?
The importance of better understanding of the health needs of people with disabilities extends to ethical issues in health care, which were the topic of the concluding keynote address, “Ethical Challenges for the Next 25 Years: Tackling Ignorance, Prejudice and Funding Priorities.” Kristi Kirschner, MD, a physiatrist at Schwab Rehabilitation Hospital and clinical professor of disability and human development and of medical education at the University of Illinois at Chicago, gave the address.
“Health care professionals are not good at judging the quality of life of people with disabilities,” Kirschner said. “They don’t know what they don’t know. Incorporating more people with disabilities into the health care workforce can make a difference.”