A home of his own

Paralyzed from the neck down, John Hinchman was told he'd have to live in a nursing home for the rest of his life. But this week, he moved into his own home in Juneau with his family as a recipient of a federal grant to help people move from a nursing home back into the community.

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"When I was at Seattle Veterans Hospital, my social workers said my best option was to stay in a nursing home. They said a nursing home was a safe environment and that I could get the immediate high-tech help I needed," said Hinchman, 52. "But all I wanted to do is go back to my Tlingit country. That is where my people are."

For the first time since he broke his neck five years ago, Hinchman is able to live under the same roof with his 5-year-old daughter, Brandi. His cousin, John Brown, and Brandi's mother, Lisa Gray, are his personal caretakers.

Hinchman said he first injured his neck in a car accident when he was 16, and then reinjured it in a series of falls, the last of which was on icy pavement and paralyzed him.

Statewide 41 people have benefited from the federal independence grants, according to grant coordinator Rita Walker.

Joan O'Keefe, executive director Southeast Alaska Independent Living, calls the transition "de-institutionalization." Her agency is helping about 325 people with significant to live an independent life.

"Our philosophy is to help our consumers become as independent as they can and live a life of dignity," O'Keefe said.

O'Keefe said independent living is best defined by Adolf Ratzka, who heads an independent living institute in Stockholm, Sweden.

"Independent living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation," said Ratzka, who needs an electrical wheelchair, a ventilator and personal assistance.

"Independent living means that we demand the same choices and control in our everyday lives that our non-disabled brothers and sisters, neighbors and friends take for granted," Ratzka said.

Hinchman said he realized that he wanted to get out of an institution when he was staying at Seattle Veterans Hospital. Breathing through a ventilator, he needed a respiratory therapist to adjust the machine for him.

"He told me that he couldn't come every time I needed him," Hinchman recalled. "It brought me to realize that I couldn't depend on other people, even though it was their responsibility to take care of me."

But it took Hinchman four years to leave a nursing home.

He first stayed in Providence Extended Care Center in Anchorage for a year and half. In June of 2002 he moved to Wildflower Court, a new nursing facility in Juneau. He left Wildflower Court in May with the help of the federal grant and more than five state or local agencies. Another housing grant from Central Council of the Tlingit and Haida Indian Tribes of Alaska eventually helped him move to the house he is living now.

"I never thought it could take so much energy to advocate for myself," Hinchman said. "As part of the process, I had to take a psychological exam to make sure that I was not crazy."

Although Hinchman doesn't need a ventilator anymore, taking care of him takes effort and coordination. Both of his caregivers have to learn how to feed medication and liquid food to him through a tube to his stomach, adjust his electrical wheelchair and turn him at night. A doctor and a nurse visit him every week.

The transition from a nursing home to the community has not been easy, but Hinchman said he has enjoyed it. He uses his computer through voice control. He waits on the front porch of his house for his daughter to come home from school. He is participating in a job-training program.

"It's great to be out," Hinchman said. "Living in an institution, you are just one of the patients. But now I have one-on-one service and I get to participate in the community. I am much happier now."

• I-Chun Che can be reached at ichun.che@juneauempire.com.