Parents who are getting older and special children who are in their prime but cannot do without care… “Supporting the disabled” families are looking forward to social assistance
Text/Yangcheng Evening News All-Media Reporter Li Meiyan Intern Guo Yixuan
Liwan District, at 6 am, 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 am, it was already a bit difficult for Aunt Lian, 74, to get 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; at 4 pm, Aunt Liao, 65, directed her son to move a bag of clothes to the second floor, and they planned to send these clothes to her friends in the hospital 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, their hair turns gray and still runs around to support their disabled children. It is 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 mentally retarded families in Guangzhou, and released the “Guangzhou Mentally Retarded Family Elderly Retired Service Requirements Research Report on the Elderly Retired Family Elderly Retarded Services. 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, are struggling with the elderly and the elderly anxiety of families who are “supporting the disabled” to form a huge question mark, waiting for the society to straighten it with practical actions.
Two-year-old families with mentally disabled participate in parent-child fun sports meetings
The 78-year-old mother and 44-year-old daughter: the thoughtful plan and the increasingly aging reality
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, suffered a stroke and was admitted to the hospital.
Aunt Xian, who was 72 years old at that time, took on the burden of the family alone, and the hospital was in the hospital every day.They ran around and took good care of 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.” “If I really sleepCinema, it would be fine if I was afraid of being paralyzed and I suffered even more.” Aunt Xian said that A Ting was in the hospital three times last year, and for a period of time it was difficult for even getting up, so she 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 caregiver. 7Cinema8-year-old Aunt Xian has high blood pressure, diabetes and heart disease. Her health is no longer as good as before. Once, A Ting was hospitalized for two weeks. There happened to be an available bed in the ward, so she pleaded with the doctor and went in. For this reason, she has been thinking about the hospital and the doctor: “I also have a heart disease, and I can’t take care of myself even if I take care of my daughter. The doctor asked me and my daughter to be hospitalized together, which saved me from hiring a nursing staff.”
Considering that I was getting older, Aunt Xian asked for advice from many sources over the years and made as meticulous arrangements as possible for her 44-year-old daughter: She joined the unit for her daughter and bought social security for more than 14 years. Now she is still missing for 9 months and has been 15 years since she has been missing. She bought two “AnxinCinema“” insurance. Last year, A Ting’s total hospitalization fee was more than 130,000 yuan, and in the end, 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 she would not be able to take care of her daughter in the future. href=”https://funnybookish.com/”>KomiksAs a child, 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 lumbar discThe problems became increasingly serious, and Aunt Xian had to be hospitalized for surgery. But now A Ting is alone at home and doesn’t have the ability to take care of herself completely. 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. The assessment result was mild disability and second-level care. “To take good care of her, I must ensure that I am healthy.” Since A Ting’s 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 Cinema.
This is the daily life of the mother and son. 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 in the month when I retired. After 10 years of adjustment, his condition was basically stable to control it.” Looking back now, Aunt Liao still blamed herself. A Ming suffered from epilepsy at the age of 6, but at that time, due to lack of understanding of this disease, he missed the best opportunity to effectively control it. In 2007, A Ming’s condition turned sharply, and the schizophrenia caused by epilepsy made him unable to sleep at night., “Sometimes a person mutters and talks to the air.” In those 10 years, she took her son to seek medical treatment and medicine: “At the beginning, the monthly pension was only 1,111 yuan, and he had to spend six or seven hundred yuan a month just taking medicine.”
She never avoided his condition in front of A Ming, and Cinema even often “get vaccinations” to him, saying, “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 her 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 go through the admission procedures with peace of mind. Babaylan
But while Aunt Liao was hospitalized, A Ming, who had not seen her 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 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, but the wind blew the door slammed and locked him outside.”
Now A Ming, nowadays, can eat, dress, bath and go to the toilet by himself, 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 left with a “bang” all the way. He likes to play basketball and often lingers around Yuexiu Park Stadium with the ball, waiting for the evening to gradually get fewer people in the stadium, so he takes a careful shot. 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 gather together to participate in entertainment activities
75-year-old mother and 38-year-old daughter: breathing service, let the relativesBabaylanOccasionally took a holiday
After her husband passed away, the burden of caring for his only daughter Longlong, who was intellectually disabled, was all on Aunt Lian’s shoulders.
From the outsider’s perspective, Longlong, 38, is not considered a caring “little cotton 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 Guard of the Universe” or read the early education storybooks borrowed by Aunt Lian from the library. Sometimes she has a change in emotions and will lose her temper at her elderly mother and break 6 elderly phones of Aunt Lian.
“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 came and went quickly like a child, and he could not predict it. “For example, if the food is cold and she will be unhappy if she asks her to make it hot before eating. Sometimes she was taking medicine and told her to pack up her things for a while, but she was unhappy again. “
Mothers always use the greatest kindness to tolerate and understand their children. In the opinion of Lian Aunt Lian, Longlong has poor language expression ability. Some things she knows but cannot express, and will be anxious. At this time, “Don’t conflict with her head, and she can only reason with her after she loses her temper.”
But the mother, who is overwhelmed by the double burden of life and psychology, also longs to be tolerated and understand. One time, Longlong lost his temper again, and even beats someone, the frustrated aunt Lian called Guangzhou Yangai Special ChildrenBabaylan‘s Parent Club’s call for help. That night, Yang Ai arranged a social worker who often entered the household and moved into Longlong’s house. He temporarily took over the care burden on Aunt Lian, allowing Aunt Lian to rest for a short week at his sister’s house. When talking about this rare “respending service”, Aunt Lian is still full of gratitude: during that time, the social worker helped take care of Longlong, led her to learn to buy vegetables and cook, and study at the street medical station. After discovering the safety hazards in the kitchen, she assisted contacting professionals to renovate the kitchen. “I will think of that social worker when I see the kitchen now.”
Although she often shouted “If I get angry, I will ignore you”, to Longlong, Aunt Lian always gave in: “What’s the solution? I can’t let her go. ”
In 2009, while her husband was seriously ill and hospitalized, Lian Aunt ran away from home and was unable to do anything, but after searching for a while, she couldn’t find a place suitable for temporary custody of mentally disabled people. She could only send her daughter to her own sister’s house for care.
In 2016, Lian Aunt 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, so she took her to the hospital: the mother and daughter were having three meals a day.The hospital canteen was solved. During the day, Longlong sat and played in the hospital or chatted with the nurses. After dinner, he went home to take a shower and go to bed by himself. During the three months after the operation, when I went home to bed and rest, 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 the house she lives in now and take Longlong to live in the 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 “2020 Guangdong Province Disabled Career Development Statistical Bulletin of Guangdong Province’s Disabled Career Services” shows that as of the end of 2020, there were 1,774 disabled care service institutions in Guangdong Province, including 30 boarding care service institutions, 1,695 day care institutions, and 49 comprehensive care 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 Guangzhou disabled care hospital for disabled people.
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 seen 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 people, there are 117 families with disabilities who rely on elderly people aged 60 or above to provide care and support, accounting for 6.8% of the disabled people.
“If calculated based on this ratio, there are about two families in Guangzhou that are “to support the disabled”Three thousand Komiks There will be thousands of parents left in the future, and the placement of children will be a big problem, and they need to intervene and pay attention in advance. “Goodbye, the parent of the special children of Yangai in Guangzhou City, told reporters that since 2018, Yangai has established a membership group for the two-year-old family to provide case management, life care, emotional support, information, home skills training and other services to the two-year-old family members of mentally disabled people. “We hope that through such practice, we will explore how to do service support for families with the ‘old and the disabled’. 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 pension problems is to return to the community’s home pension: “This group is too large. The government’s bottom-line measures can only digest thousands of beds at most. Can existing community pension service resources, rehabilitation and household access services resources, etc. be applicable to families with the elderly and the disabled? How to ensure the service and quality of life of these special families? These issues must be considered in future policy design. ”
The answer is still being explored, but some good changes are quietly happening.
In June 2019, under the guidance of the disability federation of Yuexiu District, Guangzhou City, the “Guangzhou District People with Mental Disabilities’ Federation Support Pilot Project for Two Elderly Family Support for Mental Disabilities” 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, In 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 children’s future planning and placement.
It is reported that Guangzhou Yangai Special Children Parent Club has passed the Babaylan The 9th Guangzhou Social Organization Public Welfare Venture Capital Activity Funding Project “Guangzhou ‘Old and Disabled Family Energy Enhancement Support Plan”, extends existing practical experience to more “old and disabled” families. “At the same time, we have also discovered some new needs, such as breathing services. The government currently does not have relevant service resources. We are preparing to establish a temporary care in the next step.Explore related service models. “Liang Zhitu said.
(At the request of the interviewees, A Ting, A Ming and Long Long are all pseudonyms.)