Mom finds new hope for disabled daughter Jan. 31, 2005�
By Tim Zorn / Post-Tribune staff writer Jeannette Santay had to make a difficult decision 35 years ago when she agreed to send her teenage daughter to a state institution. The Fort Wayne State Developmental Center had just opened then, caring for people with developmental disabilities. But now the state is preparing to close the Fort Wayne center in a few years. And Santay, who lives in Griffith, faces another decision: Where and how does she find someone to care for her daughter, now in her early 50s? Kathleen, who was born deaf and mentally impaired, has come to know the Fort Wayne center as her home, Jeannette says. So when a Fort Wayne counselor told Jeannette and her husband last month that the state plans to close the institution, the Santays were alarmed. �They�re pushing these kids under the rug,� Jeannette said at the time. �They don�t care what happens to them.� But recently, the Santays discovered they have more options than they first imagined. Instead of living in a building with 50 other people, they learned, Kathleen could be cared for in a house with just one other person like her. Or she could live in a group home with up to seven other people, assisted by round-the-clock caregivers. And the Santays can make those arrangements with assistance from a case manager whom they pick out. But it wasn�t a counselor or an official from the state�s Family and Social Services Administration, the bureaucracy that runs the Fort Wayne center and most of the state�s other social services, that told the Santays about their options. It was a woman, like Jeannette, who put her daughter into a state institution � and then, years later, had to find a place for her when the center shut down. Nanette Whightsel�s daughter, Suzette, was born profoundly developmentally delayed. She had been at the state�s developmental center in New Castle for more than 20 years when the state suddenly announced in 1998 that the center would close. No one had been able to care for her daughter before, Whightsel said. But now Suzette lives in a ranch-style house, five minutes from Whightsel�s, with another woman. Both women are cared for, around the clock, by trained caregivers. And for the first time since she left her mother�s home, Whightsel�s daughter can go to the grocery store or a park. �She can�t tell me how happy she is,� Whightsel said. �But I can tell how much calmer she is. ... She is so much more at peace than she ever has been in her life.� The experience impelled Whightsel to get a job with The Arc of Indiana, a statewide advocacy organization for people with developmental disabilities and their families. She shares her experiences, and those of people like her, with parents � like the Santays � who feel at sea in the sudden, unaccustomed world of community placement. Last week, two days after Jeannette first called her, Whightsel drove up to Griffith and spent four hours with the Santays. Jeannette Santay�s anxiety rolled off her as she listened to Whightsel and as they shared their experiences. It was the first time since learning of the Fort Wayne center�s future closing that she didn�t feel fearful. She envisioned Kathleen living in a home with one or two other people. Now, she wants to spread the word to other parents. Campaigning for the handicapped is a familiar crusade. In the 1960s, before schools were required to educate children like Kathleen, Jeannette and several other parents started a program � they called it Hope School for the Deaf, but it was never a school � to publicize their plight. When state-mandated special education programs began, Hope School�s assets were transferred to a special education cooperative. Reach reporter Tim Zorn at 648-3073 or by e-mail at [EMAIL PROTECTED]
