Until Feb. 3, Sara Schnell had lived at Nebraska's institution for developmentally disabled people for nearly 53 years.

But after the state health officer determined the Beatrice State Developmental Center wasn't equipped to handle "medically fragile" people like Schnell, she was moved into a Lincoln hospital.

During the next five months, she was moved to a Lincoln apartment, back to the Lincoln hospital, to a nursing home, back to the Lincoln apartment and then to the hospital again.

On June 30, she began receiving hospice care in a Lincoln nursing home, and on Thursday, she died at the age of 65.

Her stepbrother and guardian, Garry Wheeler of Lee's Summit, Mo., is not pleased with the care she received in the last five months of her life. He believes the sudden removal from her home of 53 years contributed to her decline in health.

Wheeler and Schnell's father, who died nine years ago, had long opposed any move to a community program.

"We could see her emotional health deteriorate with each move and it was manifested in that we feel that she just gave up fighting for her life," he said in an e-mail. "Part of her physical and mental degradation was finding out that she couldn't ever return to the familiar surroundings of the BSDC campus."

He finds it hard to believe BSDC couldn't care for her when he believes she was well-cared for there since the age of 12.

Schnell was well-known around campus and people there understood her way of communicating, he said.

After the emergency response to an 18-year-old BSDC resident's seizures was botched and the teen died, the state's chief medical officer ordered "medically fragile" residents removed in early February.

Those 47 residents had conditions such as uncontrolled seizures, swallowing disorders, bowel impactions, tracheostomies and significant osteoporosis. Schnell had cerebral palsy and used a wheelchair.

Wheeler is not sure what she died from, but her repeated hospital admissions were to deal with fluid in her lungs.

He said she first got sick around April, during her initial hospital stay. He said she aspirated on saliva, and he believes that was because she spent most of her time lying in a bed, unlike at BSDC, where she was in her wheelchair more often and doing activities.

Once Schnell left BSDC, she was "not herself," Wheeler said.

The old Schnell had a good sense of humor, a soft spot for kittens, puppies and the Huskers, loved Polka music, listening to birds and going to the Czech Days parade in Wilber. She won many medals in the Special Olympics - one of which she placed in her father's casket.

"Sara liked to connect with people - it didn't matter to her if you were staff or resident, it didn't matter to her if you were old or young," Wheeler said.

Before she got a feeding tube, she loved to eat and would meet Wheeler for lunch in Falls City.

"About the only thing she disliked was lime Jello and liver," he said. "Other than those, she was an agreeable person. Just not as fully capable as you and me."

Jodi Fenner, interim director of the Division of Developmental Disabilities, said when Schnell was moved she needed a higher level of care than BSDC could provide at the time.

She declined to say more about Schnell's medical condition without approval from her guardian.

"Our thoughts are with Sara's family and friends at this time," Fenner said.

Reach Deena Winter at 473-2642 or dwinter@journalstar.com.