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Life at Fernald

In September 2004, Globe West profiled four people who have spent most of their lives at the Fernald Developmental Center and their families who want them to stay there. Here is how they are doing now.

Names: Randy and Ronnie Russo
Age: 52
Admitted to Fernald: 1958
Legal guardian: Their sister, Diane Booher

Life hasn't changed much in the past year for Randy and Ronnie Russo. But their surroundings have, according to their sister, Diane Booher.

The twins still share a bedroom in Cottage 8, a single-story, wood-shingled building with 10 bedrooms. Booher said residents and staff have been shuffled around, and several nearby cottages have closed.

The brothers cannot see and can hardly speak. They are mentally retarded and have cerebral palsy. Booher has private instructors come in to provide one-on-one music therapy for her brothers.

She has stepped down as president of the Fernald League, but still keeps watch on the campus. She noted that the recreational obstacle course had been reduced to a quarter of its original size and that the Greene Building's pool -- which she called the gem of the campus -- is less available to residents because of physical education programs for children with disabilities.

Until recently, she paid a tutor to escort her brothers to the pool so that they could enjoy extra time in the water. But the aide took another job, so the brothers only get in occasional dips.

Swimming is ''one of the few activities they like," Booher said, ''and they don't have many choices."

Name: Gail Arone
Age: 55
Admitted to Fernald: Jan. 23, 1956
Legal guardian: Her sister, Marilyn Meagher

Gail Arone was born with Down syndrome. Her sister, Marilyn Meagher, remembers when Arone's pediatrician said she wouldn't live to be 20.

Year after year, she proved the doctor wrong. When Arone turned 55 on Nov. 30, Meagher, accompanied by her daughter and grandson, brought a white sheet cake and sundae cups to Fernald, where they held a small celebration for her.

Arone lives in an apartment in Malone Park, a cluster with seven other disabled women. They've been roommates for about five years.

During the day, she participates in a program on another part of the campus. Sometimes that entails sitting in a room with her roommates while operating a hand-cranked paper-shredder.

''People hear the word institution and they think, 'Terrible.' They don't know what's going on in here," Meagher said.

Meagher received a letter from Fernald administrators last month that invited her to a meeting to discuss finding a new home for her sister. Meagher wrote a letter back, stating no thanks, her sister wants to stay at Fernald.

''Everything she needs is there -- her medical care, her day program . . . and the biggest thing for me is that I'm five minutes away from there," said Meagher, who lives in Watertown.

One recent afternoon, Meagher spent time with Arone in a spacious recreation room inside the Greene Building. Arone sat in an oversized blue plastic swing. Fisher Price toys sat on a bookshelf nearby.

At the end of the visit, Meagher watched Arone walk down the hallway on her own, back to the room where her day program is held. Arone turned the door handle and walked inside. Familiarity -- one reason why Meagher wants her sister to remain at Fernald.

In November, Meagher became president of the Fernald League, which represents families and guardians of residents. It makes periodic unannounced inspections of the campus. Meagher said she fears that if the residents are relocated, the families would lose their collective oversight. ''They're never going to get my permission to move her."

Name: Susan Bolgen
Age: 54
Admitted to Fernald: 1956
Legal guardians: Her parents, Christian and Marianne Bolgen

Susan Bolgen's eyes widened when she recognized her visitors.

Christian and Marianne Bolgen surprised their daughter with an impromptu visit one afternoon in November. The couple had driven from their Tewksbury home to the Waltham facility where Bolgen has lived for most of her life.

Since her parents dropped her off at Fernald a half-century ago, Bolgen has left the campus only a handful of times.

She has a laundry list of ailments, including scoliosis, cerebral palsy, and osteoporosis. She lies in wheelchair that was custom built for her 55-inch, 90-pound frame. She is fed through a feeding tube. Staff must watch her around the clock, and change her diapers. They must lift her in and out of bed.

Last spring, Bolgen sustained a hairline fracture in her right leg, the second in as many years, according to her mother, who blamed the injury on the osteoporosis.

Bolgen was born with vision problems as well. Her optic nerves were underdeveloped. Her eyes deviate outward, and cataracts cloud the lens of her left pupil. Despite this impairment, Bolgen can see at close range and recognize people -- especially her parents.

Bolgen couldn't get up from her wheelchair to hug her parents, nor could she say their names. But she strained to move her lips to form words. Her parents just smiled.

The Bolgens are both 81. They want their daughter to stay at Fernald. ''If they were to move these people away . . . it will be such a disaster," Christian Bolgen said.

The parents said the first official word they saw that their daughter might be moved was in 2004. It appeared in her individual support plan, or ISP, a document that spells out all of her needs and the services she receives. It stated that Bolgen could go to the state's Hogan Regional Center in Danvers.

Her parents immediately objected, appealing to the state Department of Mental Retardation. The language was removed from Bolgen's ISP documents, and the subject has not come up since.

But the Bolgens anticipate that it may soon. Said Marianne Bolgen: ''Our fingers are crossed."

Photo Gallery PHOTO GALLERY: The Fernald School
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