Caixin
Jan 26, 2018 05:37 PM

Aging Parents of Disabled People Left Asking — Who Cares?

An 83-year-old Guangzhou woman suffering from heart disease confessed to murdering her son on May 9. Worried that after her death no one would be able to look after the 46-year-old, who had Downs syndrome, she had him drink water with 60 sleeping pills dissolved in it, and then strangled him with a scarf.

Her story reflects the plight of many parents. Although the passage of time renders them increasingly less able to care for their loved ones — who themselves require more care as they get older — beds in care centers are in short supply and many view such centers with suspicion.

According to the China Disabled Persons’ Federation, 45% of the country’s 85 million people living with disabilities were over 65 years old in 2006. The Yangai Parents Club, a group for parents with disabled children, said that many parents in their 50s are still providing care for adult children in their 30s.

While many children of the one-child policy era are worrying about how they will be able to look after two aged parents on their own, the elderly parents of disabled people fret over who will be able to look after their children once they cannot.

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Time takes its toll

While caring for a disabled person can be taxing for anyone, it poses a particular strain on elderly people facing physical problems.

Zhang Guifang, an 84-year-old who lives with her 64-year-old paralyzed son Huang Jinqiang in Tengshan village, Guangdong province, hoists her son out of bed every morning and drags him to where he sits and then drags him back at night. Though she has been caring for Huang since he was 25, things have become harder since his father died five years ago. She suffers from chronic back pain and her spine is severely curved.

In another case, a woman surnamed Guan has been providing round-the-clock care for her mentally disabled daughter Jiyun on her own for two decades. Guan was diagnosed with diabetes last year, and has difficulty walking. Though Guan’s relatives have for years suggested that she send her daughter to a care center, Guan hesitated because she worries that her 30-year-old daughter might be sexually harassed. However when she recently decided to apply for a bed in a care center, Guan was told that there is a long waiting list.

Shortage and suspicion

Nationwide, around 1% of people with moderate or severe disabilities can access care centers. There are significant regional variations, however, with this figure rising as high as 12% in Shanghai and as low as 0.5% in South China’s Yunnan province.

This shortage, which particularly affects rural, underdeveloped areas, has led to some families taking extreme measures. An aging Fujian province couple built a 6-square-meter (19.5 square feet) cell in which they locked their mentally ill son for three decades.

However, many parents of disabled children would not send their children into a stranger’s care even if facilities were available, as lax standards of care have made headlines over the years.

In March, the privately owned Lianxi Care Center in Shaoguan, Guangzhou, was shut down by the local government after 20 residents died between Jan. 1 and Feb. 18 last year. An investigation found that the center didn’t have the proper certifications, lacked proper fire safety and food hygiene measures, was understaffed, and kept residents in overcrowded conditions. Some children living in the center were tied up with rope to stop them moving.

“It’s expensive for care centers to provide high-quality services and decent care for the disabled,” said Zhang Hongxia, manager of Guangzhou’s Huiling Care Center. She added that it costs around 6,000 yuan ($948) a month to care for each resident. The family pays less than half of the cost. Around 10% comes from the local government and the rest is funded by donations. Zhang explains that as their residents are getting old — now more than half are over 45 years old — pressure is mounting, as they are requiring more and more care.

China included the improvement of disability care services in the 12th Five-Year Plan in 2011. However, a shortage of professional caregivers and funds has persisted. This has been exacerbated by the aging of Chinese society, with the proportion of citizens over the age of 60 expected to rise rapidly in the coming years.

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All on her own, Zhang Guifang, 84, looks after her 64-year-old son Huang Jinqiang in Tengshan Village in Maoming, Guangdong province. Huang has been unable to walk since he was 25. At first, he could move himself around with his arms. However, he lost mobility in his limbs as his health deteriorated. Zhang’s biggest challenge is to pull her son from his bed in the morning and drag him back to bed before sunset. Photo: Liang Yingfei/Caixin


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Zhang laboriously climbs up a ladder to burn an offering of incense and pray for good health on Dec. 18, the first day of a month on the Chinese lunar calendar. Photo: Liang Yingfei/Caixin


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Zhang serves Huang a meal. Although she has back problems, she has to do all the housework herself. Photo: Liang Yingfei/Caixin


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Guo Feng, a 38-year-old who has Down’s syndrome, gently holds his mother’s face as they wait for a bus in Guangzhou, Guangdong province, on Nov. 8. Worrying about her son staying alone at home, Meng Fanrong always takes him with her when she leaves the house. Photo: Liang Yingfei/Caixin


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Guo Feng admires his mother’s chorus and laughs happily at the end of the performance on Dec. 12. Photo: Liang Yingfei/Caixin


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A woman surnamed Guan dances with her daughter Jiyun by a lake on Dec. 9. Guan pushed her daughter in a wheelchair for 2 kilometers to take a walk by the lake. She wouldn’t have been able to make it unless someone else had helped her get over a slope on their route. As Guan gets older, they travel shorter distances when they go out. Photo: Liang Yingfei/Caixin


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Guan bathes her daughter with water infused with traditional Chinese medicine. She worries that her daughter will not enjoy such elaborate care when she is in a disability care center. Photo: Liang Yingfei/Caixin


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