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Group homes a solution for aging parents caring for children with disabilities

Akiko Aoyama, right, eats dinner with the help of staff at a group home in Yokohama's Sakae Ward, on Aug. 2, 2018. Aoyama cannot speak, but communicates with the workers using the hiragana phonetic alphabet. Here, the helper holds up a white board asking Aoyama if she would like some coffee. (Mainichi)

YOKOHAMA -- A group home facility for individuals with serious disabilities here is gaining attention as a possible model for supporting those individuals needing intensive assistance after the parents in charge of their care pass away.

Parents of children with serious disabilities worry that their child will not be able to get proper care once they are gone. That is where group homes like "Canvas" in Yokohama's Sakae Ward, operated by social welfare corporation "Homon no Ie" come into the picture. Located in a quiet residential area, Canvas is a two-story wooden building, and three of the four residents have a disability that ranks at the top of the level of care required for them to lead their daily lives.

In the first-floor dining area, 53-year-old Akiko Aoyama glances at a board held by a helper as she receives help eating her dinner. "Do you want coffee?" is written out in the phonetic hiragana alphabet, and she nods. When Aoyama was in second grade, she was struck by a truck whose driver had fallen asleep at the wheel, and she suffered heavy brain injuries. She cannot move her arms and legs, speak or hear. But she can understand the hiragana alphabet that she learned in elementary school. The Canvas staff members communicate with Aoyama by writing on the board or reading her lips.

In 1986, Homon no Ie opened and began operating the first facility in Japan that adults and children with severe mental and physical disabilities could commute to from their homes and named it "Tomo." Aoyama's mother Kuni, 90, who had cared for her daughter at home until she graduated from the high school division of a school for students with disabilities, wanted her to live a normal lifestyle, so she had her attend Tomo as soon as it opened. Meanwhile, Aoyama found her calling in the baking and sale of bread and it became her passion.

But things changed in 1998, when Aoyama was 33-years-old and her mother 70. Kuni's husband had already passed away, and she had reached the limit of the nursing care she could provide for her daughter. However, Kuni thought, "If I put my daughter in a nursing facility, she won't be able to go to Tomo anymore. If she goes to a group home instead, then there will be fewer people and it will feel more like a home, and she can even continue baking bread." Aoyama then moved into Homon no Ie's second group home location.

Answering the call of families wishing for their children to continue to go to a familiar and welcoming place where they can continue to be active even after their home care becomes too difficult for parents due to illness or age, Homon no Ie increased the number of group homes it operates to 13 locations across Yokohama, and the number of people who live in such facilities now totals 50 individuals. Of them, the majority has the most severe level of disabilities, and either lost their parents or their families have become too old to provide them with proper care.

At the group homes, staff members make sure to offer the most meticulous support, such as in the medical area, so that the residents can live in the facility without worrying, even with the most serious of symptoms that come along with the severe disabilities. When residents return home from their activities at day care facilities in the evening, helpers and other staff members provide them with principally one-on-one help carrying out tasks such as eating their evening meals right up until it is time to turn in for the night. All of Homon no Ie's 13 group home facilities have staff that stay overnight, even on holidays, and if there are any health concerns, the staff can contact the doctors and nurses at the medical office attached to the Tomo facility.

In fact, in 2001, Aoyama had a severe epileptic episode and was hospitalized, having to undergo surgery to cut open her windpipe and insert a breathing tube. Aoyama then required medical care, and she was told that there was no other option but to move her to a nursing care facility. However, honoring her wish to continue to bake bread, the staff members and helpers at Canvas learned how to clear phlegm from her breathing tube and other knowledge in order to meet her new needs so she could continue living at the group home.

In Aoyama's room, there is now sound-monitoring equipment, and if there are any changes in her condition overnight, a helper assigned to her in another room will be alerted. During the day, Aoyama still bakes bread and goes out shopping, and on weekends, she can even go out and visit her favorite locations like Tokyo Disneyland thanks to the comprehensive support and care of the group home staff that have expanded her world.

According to Homon no Ie President Harumi Nari, 56, with factors such as Japan's aging society, the number of requests to enter group homes is growing. However, a lack of people has made it hard to fill staff positions such as helpers, and increasing the number of locations is no simple endeavor. She also says she understands why other social welfare organizations are hesitant to get involved in handling the medical care of their clients.

Still, Nari is hopeful. "Many people with severe disabilities as well as their families wish to live locally and not in a nursing care facility," she says. "Efforts to increase the number of group homes to rescue these families are needed."

(Japanese original by Masayoshi Esashi, City News Department)

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