About three decades ago, Pam Matheson pulled her 6-year-old out of the Rosewood Center, deciding that life would be better for her developmentally disabled son if he left the isolated Baltimore County institution and escaped what she calls the constant neglect of its staff.
Reflecting last week on her decision, Matheson said the ensuing years have been good to Matthew, who was born with Cornelia de Lange syndrome. Matthew Matheson's arms end at his elbows. He cannot walk or speak, but he is happy because he is living - as best he can - like everyone else, his mother said.
Removing Matthew from Rosewood was difficult, his mother said, and she feels for the more than 150 current residents and their families who will have to find new living arrangements over the next 18 months. Gov. Martin O'Malley announced last week that the 120-year-old institution, which houses some of the state's most severely disabled residents, will be closed after decades of decline and a string of reports detailing abuse and neglect.
Last month, the state Office of Health Care Quality reported 130 incidents of "abuse, neglect, mistreatment and injuries of unknown origins" in a two-month period. The state has barred new admissions at Rosewood three times in the past year, and the facility has been in danger of losing federal funding because of the poor conditions.
Family members and legal guardians of Rosewood residents say O'Malley's decision was not a surprise. But many are uncertain what to do next: whether to place their loved ones in group homes, care for them themselves or find another state institution. Many advocates for the disabled have long called for the center's closure, but some parents and guardians say they fear the change could be traumatic for disabled adults who have lived there for nearly their entire lives.
Pam Matheson, 57, and her son are long removed from Rosewood, but she said she keeps up with what goes on and hopes that her experience will stand as an example to Rosewood families who must now make wrenching decisions about how to care for loved ones.
"I don't think those people are surviving because of the environment at Rosewood," Matheson said. "They're getting care that's keeping them alive, yes. But the same care can happen in the community."
For Matthew, moving in with his parents has saved his life, his mother said. Matheson said she would visit her son at the center and find him soaked in urine, not fed properly and generally forgotten throughout much of the day.
She said Matthew had diaper rashes that went untreated, and he often spent hours just sitting in a wheelchair. Since leaving Rosewood, Matthew has become a fixture in Ellicott City, eating at Mexican restaurants, going to the movies and making friends.
"He's never been healthier. He gets better medical care," Matheson said. "We're not limited to Rosewood doctors. If one doctor doesn't have an answer, we can go to another."
But many parents of longtime residents are resistant to the impending change.
The state health department issued a plan for residents, which calls for transitioning 136 of them into community settings.
Harry Yost doubts that can happen successfully. Yost's son Larry has been at Rosewood for 46 years.
Larry Yost, 51, was born with spinal meningitis, leaving him blind, deaf and mute.
Can't handle son
Harry Yost and his wife put him at Rosewood after doctors told them that trying to raise the boy in their home would be unfair.
"He was just too much to handle," Yost said.
Larry has never had a problem at Rosewood, his father said.
"He's always had good care," Yost said. "If anything was up, they'd give us a call. Up until three years ago, the same man was with Larry for 25 years."
Yost, 80, said he hasn't given much thought as to what to do with his son when the 18 months are up. Yost figures that his son probably will end up in a group home, because he has nowhere else to go.
Yost said he and his wife are too old to give Larry the care he needs, and none of their other five children are trained to handle him. But rather than focus his attention on making alternative arrangements, Yost said, he will mount a final push to reverse O'Malley's decision and keep Rosewood open.
"You need the care of Rosewood," Yost said. "If he gets up, there is somebody to take care of him. My wife and I aren't getting any younger."
Mary Hom is in a similar situation. With O'Malley's announcement, she must now help decide the fate of her brother Richard Nilsson, who has been at Rosewood since 1990.
Nilsson, 48, was born severely retarded. At age 2, he began banging his head on any hard surface he could find.
Hom said her parents raised Nilsson for 20 years before her father passed away. Nilsson refused to eat or drink after his father's death.
The family decided that Rosewood would be the best place for Nilsson, with around-the-clock attention.
Hom said Nilsson has had good care there. She visits Rosewood once a week and sees patients with a wide range of developmental problems, including those with disabilities that do not keep them from living a regular life.
But her brother needs constant care.
"I don't think a lot of people understand the needs of people like Rich," Hom said. "He's profoundly retarded, very demanding. He needs his space. He wears diapers. He has to be spoon-fed. He doesn't know how to go to the bathroom. He's like a 1-year-old."
Hom assumes that her brother will transfer to a group home, but she's not sure how he will take to it. Rosewood has more than 500 full-time employees.
"One person or two people are going to have a difficult time managing severely disabled people," Yost said. "How do you do that?"
Advocates for shutting Rosewood say that community settings provide more freedom and independence for the disabled, and that group homes offer equally intensive care.
Brian Cox, executive director of the Maryland Developmental Disabilities Council, has heard the concerns of some family members of longtime Rosewood residents. His organization has been at the forefront of attempts to close the center for years and is a vocal opponent of such institutions.
"It's understandable families have fears. But the belief they can't be supported well in the community is unfounded," Cox said.
"For each person in Rosewood, you can find a mirror image of the person with the same needs in the community," he said. "Some need 24-hour support ... don't speak, can't take care of their own personal care ... and they're flourishing."
Pam Matheson said that has been the case for her son since he left Rosewood in 1977. At the time, she had doubts about raising Matthew away from the structured environment of an institution, but now she encourages others to travel that path.
"In most cases, people's lives are enriched by what can happen in the community," she said.