Self-Advocacy Victories
Phone Call Restores Candidate's Right to Run
One of the most unusual circumstances confronting Equip for Equality involved Betty D. Jones, 51, candidate for political office, who is disabled by schizophrenia. She and her physically disabled husband, Daniel, were under the protection of the State Guardian and placed in the Sharon Willows South Nursing Home in Peoria. Last fall, Jones decided to run as a candidate-at-large for a seat on the Peoria City Council. She saw the $9,500 salary as a way to get welfare. She met both the residency and age requirements for candidacy for getting on the primary ballot. Now she needed only to gather 253 signatures from registered voters.
She took a bus to the election offices to get her petitions, then began hanging out at grocery store parking lots to collect the required signatures. That's when the trouble began. Another candidate, using dirty politics to eliminate her from the race, complained to the grocery store. The store called the nursing home and claimed that Jones was causing a public disturbance - even though no one else in the community had complained. The nursing home administrator had her hauled home and refused to giver her a pass to go back out. Jones called Equip for Equality. She was already familiar with the agency, having sought assistance in a housing matter several years before and, later, worked as a volunteer. Advocate Michael Richardson from the Rock Island office called the nursing home administrator.
"I explained why they shouldn't get in the way of her getting a ballot," said Richardson. Jones got her pass and her signatures - more than 500, by her count - but she was eliminated in the primary.
However, just being in the race earned her two columns in the Peoria Journal Star and gave her the courage to leave the nursing home. She went to the Social Security office as her own advocate and managed to get her benefits restored. Now she has her own apartment and is fixing it up to satisfy State Guardian requirements so that her husband can move in with her.
Losing an election has not dampened Jones' enthusiasm for activism. She still attends City Council meetings. Her next project is to undergo a new procedure to ease an arthritic hip. "I am determined to find a way to have it done - even if Public Aid won't pay," she reports in The Jones Family News. "In the process, I hope to help others. Details later."
Skydeck Adds Access for Deaf and Hard of Hearing
Chicago's tallest attraction is now accessible to people who are deaf and hard of hearing as a result of an agreement reached early this fall between the building's management, TrizecHahn Office Properties, and Equip for Equality, which advocated on behalf of Neil Isenberg, 47, who is hard of hearing. The freelance reporter from Glenwood Springs, Colo., who visited the Sears Tower Skydeck as a tourist on March 21, had difficulty hearing the audio programs presented as a part of the $8.50 tour. He sought the advocacy services of Equip for Equality under Title III of the ADA and the Illinois Human Rights Act.
As soon as TrizecHahn was notified by Equip for Equality that Skydeck was inaccessible to deaf and hard of hearing visitors, immediate changes were implemented including availability of a written script for OverTM Chicago, a high-definition theater presentation, at the ticket window with appropriates signage, and a written script of the audio tour on the 103rd floor, as well as a podium equipped with a reading light inside the OverTM Chicago theater for groups arriving with an interpreter.
"We are very pleased tat the management of the Sears Tower Skydeck responded positively and promptly to its responsibilities under the ADA and state law and voluntarily revised its procedures," said senior attorney Deborah Kennedy from EFE's Chicago office. "As a result, all people who visit this popular destination, including individuals who are deaf or hard of hearing, have the opportunity for equal enjoyment."
Renovation plans for the Skydeck include assistive listening devices for any audio portion of the tour and standby interpreters for any theater presentation offered to Skydeck guests with reasonable notice.
Information is Key to Opening Doors for Man with MS
Michael Stienke, a 55-yaer old Roselle resident on Social Security because of multiple sclerosis, was caught in a classic Catch-22. He had been advised by his doctor to do aquatic exercises as part of his physical therapy routine. Trouble was, the community pool was not accessible to someone in a wheelchair.
For years, Stienke had been trying to get the Roselle Park District to remedy the situation by installing a pool lift. Finally, this past April, he asked Equip for Equality for technical assistance, and received a tidbit of valuable information about the Park District's responsibilities under Title II of the ADA that worked like a charm. Advocate Barry Lowry from the Springfield office provided him strategies on negotiating accessibility plus information on pursuing a complaint with the Department of Justice should negotiations prove unsuccessful.
"We told him to contact the park district and ask for their self-assessment plan for the ADA compliance," said Lowry. Once he did that, it put them on notice, and things got rolling."
Within two months, the park district not only put in a self-operated pool lift but also complied with Stienke's request to make the bathhouse accessible by installing a ramp and creating a wheelchair path by removing parking bumpers. Encouraged by the success of his efforts, Stienke has become something of a zealot for advocacy, though he is a little disappointed about the apathy he's encountered by other people with disabilities.
"Once you get the final piece of the puzzle, the pictures becomes clear," said Lowry. "It was the best result he could possibly have gotten, and we were thrilled."
EFE Educates Educators on Behalf of hard of Hearing Child
Equip for Equality scored a big victory for Lake County kindergartner Kyle J. Adams, a hard of hearing child with deaf parents. The Wauconda School District and Special Education District of Lake County (SEDOL) had offered the family two options: Kyle could either attend his local school and be provided a sign language interpreter, or her could be enrolled in a segregated program for deaf and hard of hearing kids at Powers School, much farther away.
Neither option was acceptable to his parents, Wendy and Mark. If Kyle attended their neighborhood school, they felt that he would be isolated as the only child in the class with an interpreter. And the Powers School, which focused on "Signed Exact English," is not the language used in their home. They put together a compelling case for a third option, South School in Crystal Lake, a mixed environment where their son could be integrated with students who shared Kyle's disability and language, along with children without disabilities. The problem was that South School, though closer to home, lies over the boundary in McHenry County.
Chicago advocates Kevin Irvine and Mary Joly attended Kyle's placement meeting and were able to convince the administrators to admit they didn't know enough about either Powers or South schools. "Our argument was rooted in the cultural reasons why Kyle would be most appropriately educated in South School," said Irvine. "We got them to agree to visit both placements, but were skeptical about our ability to prevail in a due process hearing if SEDOL dug in their heels. But a week before school started, they approved funding for Kyle to attend South School, even though it was out-of-district.
"Kyle's parents did a fantastic job of sizing up the options presented to them, exploring alternatives and building their case for the most appropriate placement," said Irvine. "It was a privilege to be a part of this critical moment in Kyle's educational life."
Easy Solutions at Elgin
The rights of Louis Clark, a recipient at Elgin Mental Health Center, Pinel Unit, were at issue this past winter. In one of his efforts at self-advocacy with Equip for Equality support, Clark pointed out that a notice posted in all the units at Elgin mentioned that recipients had a right to vote in federal elections, but neglected to mention that right in state and local elections. That poster has now been corrected.
In the second matter, Clark was concerned about a new policy that seemed to restrict his right to possess more than a few items of clothing. After several phone calls to Elgin, Chicago advocate Kevin Irvine discovered that a committee guideline had been issued in preparation for a move by some recipients to a newly constructed unit with less storage space. Clark was told he had a right to keep as much clothing as he could fit neatly in his storage area.
A Test of Wills
Taking the bar exam can give anyone a headache, but a 27 year-old law school student who had registered to take the exam this summer in Chicago, was already suffering from chronic sinus pain, intermittent headaches and double vision due to a surgical injury. He asked for an accommodation that would allow him two 15-minute breaks during the afternoon sessions, and that the testing period be extended by an amount of time equal to the breaks. He also requested permission to bring a beverage with him should he need to take medication. The Illinois Board of Admissions to the Bar denied the accommodation.
After consulting with the client and his doctor, EFE Chicago senior attorney Deborah Kennedy sent a demand letter to the Board stating that if the accommodations were not provided, EFE was prepared to file suit in Federal court. She also had several phone conversations with Board members and medical experts. The response, Kennedy said, was swift and satisfying. "It was a very positive experience. The Board reacted to our request and provided the appropriate accommodation." The student took the bar exam in July.
Second-Time-Around Victory Just as Sweet
Consumers and advocacy organizations can take advantage of a precedent set by EFE with regard to little used applications of the Illinois applications of the Illinois Mental Health Code. In 1995, EFE Rock Island advocate Mike Richardson won a precedent-setting victory for client Cheryl Turman, who was being hounded by the Illinois Department of Mental Health and Developmental Disabilities (DMHDD) for payment of charges incurred during her eight confinements at a State mental hospital. Turman alleged that she should not be liable for the charges because she never received an itemized bill as required by law.
The hospital claimed that, according to the Illinois Constitution, a debt owed to the State couldn't be waived. EFE argued successfully that the clause was no longer part of the new Constitution (which bad been revised in 1970) and that DMHDD can forgive a debt for a good cause: in this case, the stress of a threatened collection action, which was putting the client at risk for readmission to the hospital.
The same strategy was applied successfully by Chicago advocate Kevin Irvine in an appeal to the Illinois Department of Human Services over a several thousand dollar bill resulting from a Chicago area woman's one-week stay at Tinley Park mental Health Care Center in November, 1997. The client was unable to pay, and the monthly billings were causing her great distress, putting her at risk of re-hospitalization.
"Our client was frustrated at the length of the administrative process - 16 months between requesting a hearing and actually getting a final, positive decision from the State," said Irvine, "and that weighed on her the entire time. The systems set up are not quick or easy and lean heavily in favor service providers and state or local administrators.
"You have to be brave to advocate for yourself. You stick your neck out to some degree. You risk things that might get worse. But some of these cases prove that if there's something you really feel is your right, you have to do what have to do and not accept something else that doesn't feel just."
