Aging parents and special children who are in their prime but cannot do without care… “Supporting the disabled” families look forward to social assistance
Text/Yangcheng EveningKomiksAll-media reporter Li Meiyan, a real intern. Guo Yixuan
Liwan District, at 6 a.m., 78-year-old Aunt Xian got up and prepared breakfast, turned around and walked into the room to wake up her daughter to take medicine, and helped her record the heart rate in the morning; Haizhu District, at 9 a.m., 74-year-old Aunt Lian was already a little troubled to go up and down the four-story stairs, but in order to allow her daughter who doesn’t like to go out more, she insisted on taking her daughter to the vegetable market to buy vegetables; in Yuexiu District, at 4 a.m., 65-year-old Aunt Liao directed her son to move a bag of clothes to the second floor, and they planned to send these clothes to their friends who were hospitalized the next day.
They are typical families of “supporting the disabled by the elderly”: their parents are at retirement age, but because their only children are accompanied by intellectual or mental disorders, they are still running around to support their disabled children, making it difficult to enjoy their old age as their peers.
In December last year, Guangzhou Yangai Special Children Parent Club, the first social service institution in China to serve parents of special children, conducted a survey on nearly 600 ordinary elderly people and nearly 300 “old and disabled” families in Guangzhou, and released the “Guangzhou “Research Report on the Elderly Care Service Requirements for Mental Disabilities Families in Mental Disabilities”. When mentioning the difficulties and challenges of children’s future resettlement planning, more than 60% of parents are most worried that their children’s lives are not guaranteed.
The parents who are getting older and the special children who are in their prime but cannot do without care, the elderly care anxiety of families who “maintain the disabled” are tangled into a huge question mark, waiting for the society to straighten it with practical actions.
Two families with mentally disabled participate in parent-child fun sports meetings
78-year-old mother and 44-year-old daughter: exhaustive plans and increasingly aging realityBabaylan 2016 was the most difficult year in Aunt Xian’s memory. First, her wife was sent to the ICU after she became more emphysema. After being hospitalized for three months, she finally returned home to rest. Her daughter A Ting, who was mentally disabled, suddenlyBabaylanI was admitted to the hospital after suffering a stroke.
Auntie Xian, who was 72 years old at that time, took on the burden of her family alone. She ran around the hospital every day and took care of the two bedridden patients, until their condition gradually stabilized. During that time, she lost more than ten pounds at once.
But the crisis has not really passed. In August 2020, her husband, who had been bedridden for a long time, passed away. In September, A Ting was admitted to the hospital due to swelling throughout her body. The problem of bradycardia after the stroke became more and more serious. At the lowest point, her heart rate was only more than 20 times per minute. The doctor suggested installing a pacemaker for A Ting, otherwise “it is possible to fall asleep and the person will be gone.”
“It would be fine if I really fell asleep and left, but I was afraid of being paralyzed and even suffering.” Aunt Xian said that A Ting was hospitalized three times last year. For a period of time, she even had difficulty getting up and had to deal with urination and defecation in bed. In August last year, she made up her mind to install a pacemaker for A Ting: “I’m recovering well now, but my right hand is not as flexible as before and I can’t hold things.”
The hardest time was when I was in the hospital for a escort. Aunt Xian, 78, has hypertension, diabetes and heart disease, and her health is no longer as good as before. Once, A Ting was hospitalized for two weeks and happened to have an available bed in the ward, so she pleaded with the doctor and went in. For this reason, Cinema She has been thinking about the good things of the hospital and the doctor: “I also have a heart disease, and I can’t take care of myself, and the doctor asked me to be hospitalized with my daughter, which saved me from it. href=”https://funnybookish.com/”>Babaylan Ask for the older age, Aunt Xian asked for advice from many sources over the years and made as detailed arrangements for her 44-year-old daughter: she joined the unit for her daughter and bought social security for more than 14 years in a row. Now she has 9 months missing and has been 15 years since she has been missing. She bought two “Safe Project” insurance. Last year, A Ting’s total hospitalization fee was more than 130,000 yuan, and finally the medical insurance and insurance reimbursement was only more than 15,000 yuan. She also applied for a waiting time for her daughter in Guangzhou Disabled Care Home, hoping that when she was unable to take care of her daughter in the future, her daughter could spend the rest of her life in the nursing home; she even began to consider who would be her daughter’s guardian after she left.
The thoughtful plan faces the increasingly aging reality, sometimes it is inevitable to be stretched. Last September, due to waistThe problem of herniated disc is getting worse, and Aunt Xian has to be hospitalized for surgery. But now A Ting is unable to take care of herself at home alone. In desperation, she had to ask her sister to come to take care of her for a few days, and “my sister is also in her 70s.”
Some time ago, the staff came to Aunt Xian to conduct a comprehensive assessment of her elderly care needs, and the assessment results were mild disability and second-level care. “To take good care of her, I must ensure that I am healthy.” Since A Ting had a stroke, in order to facilitate nighttime care, Aunt Xian has been sleeping in the same bed with her daughter. She had to get up to check if there was any movement. “I hope I can stay at home until I can’t take care of her, and see if it’s possible to live in a nursing home with her.”
A Ting (left) and Aunt Xian were looking at photos of the previous trip.
The 65-year-old mother and 38-year-old son: “I have the ability to take care of myself and will live a better life in the nursing home in the future.” “Catch this place with my right hand and pick it up.” As soon as I came back from outside, Aunt Liao directed her son A Ming to move a bag of clothes to the second floor. A Ming wiped his sweat, grabbed the knot pointing to by his mother with his right hand, and took the bag into his arms with his left hand. He looked focused, without saying a word, and obediently walked towards the stairs.
This is the daily life of the mother and son getting along. 38-year-old A Ming was diagnosed with an intellectual disability since childhood and it was difficult to complete slightly complicated tasks independently. Aunt Liao, 65, patiently dismantled each move one by one and converted it into instructions that her son could understand and execute, so as to exercise his ability to take care of himself.
“In 2007, he suddenly fell ill, and then adjusted for 10 years, and his condition was basically stable and controlled.” Looking back now, Aunt Liao still blamed herself. A Ming suffered from epilepsy at the age of 6, but at that time, because of his lack of understanding of this disease, he missed the best opportunity to effectively control it. In 2007, A Ming’s condition took a sharp turn for the worse. The schizophrenia caused by epilepsy made him unable to sleep at night. “Sometimes, he mumbled alone and spoke to the air.” In those 10 years, she took her son to seek medical treatment and medicine.Babaylan: “At the beginning, the monthly pension was only 1,111 yuan, and he had to spend six or seven hundred yuan every month just taking medicine.”
She never stayed with Ah MingHe avoided his condition in front of him, and even often said to him “sample” and said, “My mother will leave sooner or later.” In the race against time and disability, her desire to help her son realize her basic self-care is becoming more and more urgent: “If I leave, he has the ability to take care of himself, and he will live a better life in the nursing home in the future.”
At the beginning of this year, Aunt Liao had to be admitted to the hospital for thyroid problems, and how to take care of A Ming’s daily life became the biggest problem.
She left enough food in the iron box where she kept her change, and appointed A Ming to solve three meals a day at a snack shop near her home, and asked the owner of the snack shop to help him pay attention to A Ming’s situation. At the same time, she entrusted a distant relative to accompany A Ming at home every night to prevent accidents such as “touching the electric door with wet hands”. Only after everything was arranged was made, she could handle the admission procedures with peace of mind.
But just when Aunt Liao was hospitalizedCinema, A Ming, who had not seen his mother for a long time, called and said, “You are not at home, I am so lonely alone.” This phone call made her break her defense instantly. She softly comforted the other end of the phone, “You clean up the house and your mother will come back.” The obedient A Ming focused on shiny tables, chairs, benches, and corners in the house: “He wiped the iron gate outside the house all the way, but the wind blew the door slammed and closed it, locked him outside.”
Now A Ming, who can eat, dress, bath and go to the toilet on his own, shop independently, and shop independently, and carefully place the things at home neatly. Occasionally, he listened quietly to the tricycle outside the door crossing the loose stone road, and went away with a “bang”. He likes to play basketball and often lingers around Yuexiu Park Stadium with the ball, waiting for the evening to gradually fewer people in the court, and carefully shoot on the court. He also likes to browse current news on his mobile phone, claiming that he likes to watch international news the most. Even when reporters asked him what were the popular international news that day, he blurted out that “Biden was infected with the new crown.”
A Ming like this also made Aunt Liao imagine what would happen if her son had a sound intelligence development: “In that case, he should have already started a family now.”
Parents of special children gathered together to participate in entertainment activities
75-year-old mother and 38-year-old daughter: breathing service, let family affection take an occasional vacation
KomiksAfter her husband passed away, the burden of caring for his only daughter Longlong, who was mentally disabled, was all on Aunt Lian’s shoulders.
From outsiders’ perspective, Longlong, 38 years old this year, is not considered a caring “little cotton-padded jacket”. She is sensitive by nature and does not like to contact the outside world. She often stays at home to watch the cartoon “The Guardian of the Universe” or reads the early education storybooks borrowed by Aunt Lian from the library. Sometimes she has a change in emotions and will get angry at her elderly mother and break up Aunt Lian’s six elderly mobile phones.
“Although I have raised her for more than 30 years, sometimes I don’t know what she is thinking.” Aunt Lian said that Longlong’s temper comes and goes quickly like a child, and there is no way Cinema expected, “For example, if the food is cold and she asks her to heat it up before eating, she will be unhappy. Sometimes she is taking medicine and telling her to pack up the things for a while, and she will be unhappy again.”
Mothers always use the greatest kindness to tolerate and understand the children. In Aunt Lian’s opinion, Longlongyu has poor ability to express words. She knows some things but cannot express them, so she will be anxious. At this time, “Don’t conflict with her head, and she can only reason with her after she gets angry.”
But the mother, who is overwhelmed by the double burden of life and psychology, also longs to be tolerated and understood. After Longlong lost his temper again and even beat someone, the frustrated Aunt Lian called the Guangzhou Yangai Special Children Parent Club Babaylan‘s help call. That night, Yang Ai arranged for a social worker who often entered the household to move into Longlong’s house, and temporarily took over the care burden on Aunt Lian, so that Aunt Lian could go to her sister’s house to rest for a short week. When talking about this rare “respray service”, Aunt Lian is still full of gratitude: during that time, social workers helped take care of Longlong, led her to learn how to buy vegetables and cook, and study at the street medical station. After discovering the safety hazards of the kitchen, she assisted in contacting professionals to renovate the kitchen, “I think of that social worker when I see the kitchen now.”
Although he kept shouting from time to time, “I will ignore you if I get angry”, when it comes to Longlong, Aunt Lian always surrenders: “What’s the solution? I can’t let her go.”
When her husband was seriously ill and was hospitalized in 2009, Aunt Lian ran to the hospital at both ends of her home, and was unable to find a place suitable for a short-term custody of mentally retarded people. She could only send her daughter to her own sister’s house to take care of her.
In 2016, Aunt Lian had to be admitted to the hospital for surgery due to lumbar disc herniation. She was worried that Longlong would take her to the hospital together: the mother and daughter had three meals a day in the hospital canteen. During the day, Longlong sat and played in the hospital or chatted with the nurses. After dinner, she went home to take a shower and sleep. Postoperative returnDuring the three months of bed resting at home, because it was inconvenient to buy vegetables and cook for Longlong, Aunt Lian specially hired a nurse to help.
“She is getting older and older, and our destination is always a nursing home. When I still have the ability, I always want to let her live a warm life with a family.” When I mention the future, even my aunt’s tone was melancholy and helpless. She plans to sell her current house in the future and bring Longlong into a nursing home. “I hope that in the future there will be some institutions like this that can accept us and live in together.”
Parents of special children participate in the open day estate supervision event for lawyers
In-depth interpretation
How to support the elderly with “Super the elderly and the disabled”:
The answer is still being explored. Changes have occurred
Parents who are getting older and children who are in their prime but still cannot do without care. I hope that an institution can accept elderly parents and disabled children at the same time—it is the same voice of Aunt Lian and others.
The Statistical Bulletin of the Development of Disabled Persons in Guangdong Province in 2020 shows that as of the end of 2020, there were 1,774 disabled nursing service institutions in Guangdong Province, including 30 boarding nursing service institutions, 1,695 day nursing institutions, and 49 comprehensive nursing service institutions. But for older people with mental disabilities, the more common choice is to go to public care institutions. In Guangzhou, there is only one public care institution that is counterpart to those with mental disabilities in Guangzhou.
In March this year, Aunt Lian ranked Longlong in Guangzhou Disabled Care Home, and the latest waiting list for application is 692. As of June 29 this year, 706 people have applied to Guangzhou Disabled Care Home for Nursing. The application time shows that the first-ranked waiting staff has been waiting for 11 years – he applied for waiting in July 2011.
How many families like this “supporting the disabled” in Guangzhou are still there? This may be a glimpse from a set of public data: data from Guangzhou Sunshine Angel Social Work Service Center shows that there are 1,730 registered disabled people in Shilou Town, Panyu District, Guangzhou, and among the disabled, there are 11 families with disabilities who rely on care and support for elderly people aged 60 or above. Cinema7 families with disabled people who rely on care and support for elderly people aged 60 or above., accounting for 6.8% of people with disabilities.
“If calculated based on this ratio, there are about 20,000 to 30,000 families in Guangzhou, and these parents are in the future. href=”https://funnybookish.com/”>Komiks The mother is gone, and the placement of the child will be a big problem and needs to be intervened and paid attention in advance. “Liang Zhitu, Director-General of Guangzhou Yangai Special Children Parent Club, told reporters that since 2018, Yangai has established a double-old family member group to provide case management, life care, emotional support, information and home skills training for double-old family members of mentally disabled people with mentally disabled people with case management, life care, emotional support, information and home skills training “We hope to explore how to do service support for families with the elderly and disabled through such practices. It is different from ordinary elderly care services and from special children whose parents are not yet retired.”
In Liang Zhitu’s view, the key to truly solving these special family elderly care problems is to return to the community’s home-based elderly care: “This group is too large, and the government’s bottom-up measures can only digest thousands of beds at most, and the existing community elderly care services<a Can Cinema's service resources, rehabilitation and household access resources, etc. be applicable to families with "supporting the disabled with the elderly"? How to ensure the service and quality of life of these special families? These issues need to be considered in the future policy design. "
The answer is still being explored, but some good changes are happening quietly.
In June 2019, under the business guidance of the Yuexiu District Disabled Persons’ Federation of Guangzhou City, the “Guangzhou District Mental Disabled Family Support Pilot Project” was officially launched, and some regular and emergency response services have been gradually formed, such as providing psychological counseling and emotional support, coordinating home-based elderly care personnel to take care of mentally disabled people in the short term to reduce the burden on parents of mentally disabled people, etc. At the same time, it is also gradually improving the service resource library and service support system. Liang Zhitu found that among the more than 30 families they provide case management, parents have gradually learned to refine specific needs, such as how to reasonably plan property and how to do custody, etc., and have a clearer understanding of the children’s planning and placement without Komiks.
It is reported that Guangzhou Yangai Special Children Parent Club has implemented the “Guangzhou ‘Old and Disabled Family Energy Enhancement Support Plan” through the implementation of the 9th Guangzhou Social Organization Public Welfare Venture Capital Activity Funding Project, extending existing practical experience to more “old and disable” families. “At the same time, we have also discovered some new needs, such as respite services, and the government currently does not have relevant service resources. In the next step, we are preparing to establish a temporary care.Explore related service models. “Liang Zhitu said.
(At the request of the interviewees, A Ting, A Ming and Long Long are all pseudonyms.)