Disabled care moves into the community

Since Helemano Plantation opened in 1984, the trend in care for people with developmental disabilities has moved from institutions to community integration, from paternalism to self-determination.

"To Hawaii's credit, we're way out in front among the states," said David Fray, chief of the Developmental Disabilities Division of the state Department of Health. "We have really made the commitment to community service. They live in the community, live around their family, neighbors, cousins. That model works much better than the congregate model."

"Charlotte was placed there by choice, she stays there by choice. I can't be her co-worker, I can't be her trainer. We're her parents and her family. She is there because she has friends there. She has the fullest life." Judie DeBone / About her daughter, Charlotte, above, a client at Helemano Plantation

In Hawaii, 92 percent of adults with developmental disabilities, such as mental retardation, live with relatives or in small care homes in the community, rather than in institutions, according to "The State of the States in Developmental Disabilities 2008," a report by the University of Colorado. That's up from 65 percent in 1988. An institution is defined as having more than six beds.

Waimano Home, the state institution for people with severe disabilities, was shut down in 1999 after an outcry over conditions there, and patients were transitioned into the community. The trend is echoed across the country. Nationally, 70 percent of adults with developmental disabilities in the country were in residential care in 2006, up from 13 percent in 1988.

"Our experience in Hawaii has been, for the last 10 years, that people are served best with their families," Fray said. "We can pay family members to provide care for people in their home. Two-thirds of the people in Hawaii we support with their birth family. We have many, many families who want to be adult foster parents."

Helemano Plantation, run by Opportunities for the Retarded Inc., offers a unique alternative, a full-service community for adults with developmental disabilities.

Clients live with their peers and a counselor in five-bedroom homes on its landscaped property north of Wahiawa. They eat dinner together at its restaurant, where they can also get work experience. Some attend classes on site, others work at military dining halls. They take off-campus excursions on weekends.

Other nonprofits in Hawaii provide services to the developmentally disabled, such as housing or job training, but no one else does it all. Judie and Bob DeBone of Kailua say Helemano has given their daughter Charlotte, 42, a community where she feels she belongs.

"Charlotte was placed there by choice, she stays there by choice," said Judie DeBone. "I can't be her co-worker, I can't be her trainer. We're her parents and her family. She is there because she has friends there. She has the fullest life. If I thought we could do better for her, she would not be there."

Charlotte DeBone moved to Helemano 20 years ago and calls home almost daily to chat about her activities. She can handle reading and math at about a third-grade level, and takes computer classes, but needs supervision. She is proud to report that she recently completed training as an assistant to a nurse's aide.

"I'm waiting for the senior citizens center to open up so I can work with the seniors part-time," she said. "My mom's a nurse and I think it'll be great for me."

The number of clients Helemano serves has dropped to 60 today from 100 a decade ago, with most of the loss among day clients. As many of its residents age, Susanna Cheung, founder of Helemano Plantation, is focusing her energies on a senior day-care center she is building next door. She has cultivated ties with the military, and troops are donating their labor to finish the project.

Dennis Chun, a member of the board of Opportunities for the Retarded, said he values the stability provided at Helemano, which allows clients to age in place. He brought his sister, Darlene, who is retarded, to Helemano after their parents died. He had tried various residential care homes, but the clients and caregivers kept changing, and "there was constant turmoil."

"My sister's been here since Day 1, close to 30 years," Chun said. "It's made a huge difference in her life. My sister gets far better care here than probably 98 percent of the people on this island."

ORI Program Director Yvonne de Luna said Helemano gives families in Hawaii an important option in care. "We offer a choice," she said. "To some, we may be passe. But many of the people that are here may not view it that way."

Family members of clients agree, saying they depend on Helemano.

"We don't want anything to happen to this place," said Osame Yamamoto, 87, whose son has lived at Helemano since it opened. "It's going to be a disaster for us. With Brian doing so well here, and everything going so well, you can imagine what's going to happen."