Forgotten Caregivers: A Breakthrough Path for Families of mentally handicapped people

▲Parents of mentally handicapped people accompany young people with mental disabilities on travel. (Photo by Zhou Wanjun)

In the just-concluded 2022 National Two Sessions, the protection of disabled groups has become one of the most concerned topics of the two sessions.

Among them, Yu Minhong, member of the National Committee of the Chinese People's Political Consultative Conference and chairman of New Oriental Education and Technology Group, suggested the establishment of a family support policy for the disabled, mobilizing social forces to participate in fundraising and providing diversified and personalized family support services for the disabled, and improving the ability of the disabled to raise and resist pressure.

Behind the proposal is a group of forgotten disabled family members. In the process of long-term care for a disabled family, they face multiple pressures from the economy, body and mind, society, etc., and all their demands ultimately point to "making their children healthy, safe and happy, and living with dignity and value."

This article interviews people with mental disabilities and their families, and the full text is about 6990 words.

*Mentally disabled: including mental retardation, cerebral palsy with intellectual disability, Down syndrome population, autism spectrum population, etc., the total population of the mainland exceeds 15 million people.

Wen | Zhou Wanjun

01

Children with autism Lonely parents

Liao Min's week usually goes like this: On Monday morning, Li Yuan, the son of a 42-year-old patient with severe mental disorders, was sent to the Huiling Service Center in Shenzhen, and then picked up again on Friday afternoon. The rest of the time, in addition to normal life communication, the most important thing is to always pay attention to participating in activities related to the rights and interests of older people with mental disabilities.

Liao Min is 72 years old this year and is a well-known positive mother among the parents of elderly mentally disabled people. Just a few days ago, she just received a call from a parent of an elderly mentally handicapped person. As soon as the phone was connected, the other party shouted with a crying voice: "I am so painful, I don't want to be a person!" Liao Min panicked and quickly comforted the other party. However, without saying two words, Liao Min suddenly felt "quite powerless".

"Just let her cry, that's how I came." Liao Min smiled bitterly.

In a family, when a mentally handicapped child is born, it may mean that a parent is also trapped in the home, unable to work, lose his life, or even have no self.

"Can you believe it? I used to be a very cheerful person, singing and dancing. As if afraid I wouldn't believe it, Chen Pi vigorously flipped through the few old photos on his phone.

"You see, how dark my hair was back then."

"This picture, smiling so happily, seems to have been taken at the beach."

In each photo, there is a slightly fat man with dark hair with open arms and laughing at the camera, which is similar to the two white sideburns and thin face of Chen Pi in front of him.

In 2010, Chen Pi's 2-year-old son, Yi ge, was diagnosed with severe autism. After 4 years, the wife was overwhelmed and divorced him. "You don't blame me, it's been 6 years, I really can't stand it." After saying that, the wife left the house without turning her head.

Faced with a severely autistic child waiting to be fed, Chen Pi, who works alone outside the home, can only choose to become an unemployed single father. Chen Pi said that at that time, he could not understand the meaning behind his wife's words, but just felt that it was so difficult to bring a child?

"It's hard, it's too hard." After resigning, except for relatives, Chen Pi cut off almost all social circles. In the past 8 years, he often has such a feeling: he is like being caught in a net, the more desperately he struggles, the more physically and mentally exhausted, as the child grows up, the net has a tendency to tighten tighter and tighter.

In 2020, in an argument with a child, the mobile phone that Chen Pi had used for many years was completely broken. In that phone, he had almost all of his past: articles he wrote when he was angry, images recorded when he was hopeful about life. "It's like saying goodbye to my past self completely." Chen Pi said.

Caring for an autistic child creates a lonely parent.

Once, a tantrum shredded the textbook and threw it all over the room, and Chen Pi felt that the string in his brain "collapsed" and broke. "Just go with the kids." This desperate thought flashed by, and after returning to God, Chen Pi regretted it again: "This is a life, what right do I have to do this?" ”

On January 4, 2021, the 13th birthday of Yi Ge, Chen Pi specially made three dishes for the children: love eggs, white seared greens, and beans fried meat. And wrote a poem in the circle of friends, which was the last time he wrote a poem in the circle of friends. Since the child entered puberty, the emotions have become more complicated, along with the physical development, it has become more difficult to take care of, which makes Chen Pi have to spend more effort, and since then closed the circle of friends who share life. "I just want to close myself off." He said.

02

Where does the money come from?

It was only in the past 10 years that Liao Min gradually had a life of her own.

In 2009, in order to allow children with mental disabilities to live with dignity without their parents, the Shenzhen Parent Resource Center for Autistic People (now Shenzhen Shouwang Family Care Association for Mentally Handicapped People) and Liao Yanhui, a parent of mentally disabled people in Shenzhen Autism Research Association, have been established to organize the Shenzhen Luohu District Ren'ai Rehabilitation Service Center to provide rehabilitation services for elderly people with mental disabilities.

Since then, Liao Min's son Li Yuan has had a temporary shelter, and Liao Min has also been temporarily relieved from the burden of taking care of his son. In 2016, Liao Sent Her Son to the newly opened Shenzhen Huiling Service Center for rehabilitation training and trusteeship, when Huiling also provided sheltered employment for people over the age of 15 with mental disabilities.

It was her most relaxed and enjoyable year. "When I go to pick up Li Yuan every week, I can see his progress, and later I can earn a little money through the work arranged by the center and buy yogurt for myself to drink." Liao Min said. But this hopeful day didn't last long, because the operating costs such as site rentals, coupled with the loss of professional staff and other reasons, Huiling was able to provide services that were gradually reduced, and slowly only community home care and day care services were left.

▲Young people with mental disabilities learn floral art at Shenzhen Renai Rehabilitation Service Center. (Photo by the old dog)

Still, many parents don't have the financial means to send mentally handicapped children to such institutions.

For more than a decade, in order to get a moment of respite and allow children to continue to participate in daily life without losing their basic social functions early, Liao Min has tried hourly nannies, community private trustees, various day or day care institutions, and the government's advocacy of home security.

She calculated an account for me: in the institution to pay a monthly fee of 4000-6000 yuan, another 300 yuan / day on weekends; at home to hire people, full-day nannies 8000 yuan per month, temporary hourly work is 80 yuan / hour; home security, the relevant departments according to the family income situation to give a monthly home care service fee subsidy of 1000 yuan or 1500 yuan, provided that someone can take care of the family.

Chen Pi is the parent who can't afford it. For 8 years, Chen Pi could only survive through the financial support of relatives and friends and the government's subsidies for the care of the disabled and rehabilitation subsidies. To open your eyes and close your eyes every day is to think about where the next day's living expenses will come from.

Tangerine Pi did not want to go out to work and ask someone to take care of the children. "Two days a day can be taken care of for many years, and the closest relatives can't stand it, and who wants to?" What's more, Chen Pi said, this fee is simply not something that the average working class can pay.

The data speaks for itself. According to the "Blue Book on the Security Status of Mentally Handicapped Persons in China", among the 7274 families with mental disabilities in 33 provinces and cities/regions across the country, the family income of mentally disabled people is less than 50,000 yuan, accounting for about 62%, 100,000-200,000 yuan is about 11%, and more than 200,000 yuan is 6%.

In 2020, Shenzhen Shouwang Family Care Association for People with Mental Disabilities, together with Lanzhou De'ai Ai Society Service Center for People with Intellectual Disabilities, Hefei Luyang District Chunyu Parent Support Center for Mentally Handicapped People, and Liuzhou Association for Mentally Disabled persons and Relatives and Friends, conducted a comprehensive survey of the family care burden and public service needs of mentally disabled people in the above four cities. The survey results show that only about 1/3 of the caregivers of the mentally handicapped who participated in the survey were in a full-time working state, more than half (53.97%) were in the state of non-work, and 61.92% of the respondents had a monthly income of less than 3,000 yuan.

▲Young people with mental disabilities participate in outdoor activities organized by Shenzhen Shouwang Family Care Association for People with Mental Disabilities. (Photo by the old dog)

As parents age, it is particularly important for society to provide respite services and temporary care services for families. Since 2005, Liao Min has felt that as she grows old, she takes care of a mentally handicapped child who is in her prime but has no language or self-care ability, and has inevitably felt overwhelmed and frightened. "The strength is not as great as his, and he does not run as fast as he is." Liao Min said that every time he went out and did not have time to take care of Li Yuan, he would let him crouch down in place to avoid unexpected situations caused by his random running, "just like treating a dog, but what can be done?" ”

A few months ago, Li Yuan accidentally knocked out his front teeth and spent 6,000 yuan on the treatment fee, which made Liao Min have to calculate carefully. "If you don't have a pension, you can't solve any problems with the government's monthly subsidy of more than 400 yuan for the care of the disabled." Liao Min said. For the vast majority of ordinary families, having a child with a mental disability is the first thing to face is heavy financial pressure.

03

There is no end in sight to taking care of this

Every Monday at 9 a.m., Liao Min sends Li Yuan back to Hui Ling. The bus departs from the city center of Shenzhen to Shatoujiao, Yantian. The city's tall buildings swept past the car window, followed by the blue sea and the slight smell of the sea. Along the way, Li Yuan looked at the changing scenery outside the window and danced happily, constantly muttering vague words in his mouth.

Occasionally, passengers on the car cast strange and inquiring eyes, and Liao Min could only show a slightly embarrassed smile and keep slapping Li Yuan to stop him. After sending Li Yuan into the institution, Liao Min suddenly sighed, turned to me and said, "My only wish is to die one day later than my son." ”

"It's a phrase that almost every parent of a mentally handicapped person says." Liao Yanhui, who is currently the executive director of the China Association for the Development of the Cause of the Disabled and the chairman of the Shenzhen Association of Mentally Disabled Persons and Relatives and Friends, said that behind the wishes is an extremely cruel reality: people with mental disabilities can be sent to integrated schools and special schools when they are young, but as they grow up, many of them, especially the severely ill, have no work to fight, have nothing to do, and when the family support system collapses, they will face the dilemma of "nowhere to go".

This is also the "cliff effect" that researchers have observed in the field of mental disability services in recent years: that is, once people with mental disabilities reach a certain age, the benefits or services available to them will decline precipitously in terms of category and number.

▲2021 Shenzhen Employment Assistance and Disability Recruitment Fair. (Photo by the old dog)

In 2018, Cao Hongyi, a 22-year-old mentally handicapped person, entered the Shenzhen People's Love Comprehensive Service Center for the Disabled. This training and employment base for the disabled jointly funded by the Shenzhen Disabled Persons' Federation and its directly subordinate units provides vocational training, sheltered employment, auxiliary employment, midway dormitories and other professional services for the intellectual and mentally disabled persons free of charge, so as to promote the early integration of the disabled into society.

This is a place that many parents envy, but it is not a permanent destination, according to the center's official website, the service period of students is usually based on three years. Letting her son find a job and enter the next stage of his life is the goal of his mother, Huang Xueqing.

In the past four years, Cao Hongyi's mother, Huang Xueqing, has taken him to various job fairs for the disabled and participated in various supportive employment pilot projects, but the reality is that "it is easier for physically disabled people to find jobs." Some parents revealed that most of the more than 180 students currently serving the center full-time have stayed for more than three years.

Even if people with mental disabilities are successfully employed, they are only at the starting point of the next challenge.

Yu Heng, a 25-year-old person with mild mental disabilities, joined SAP in 2017 through the "SAP China Autism Project". Successful employment for nearly 5 years has made Yuheng a "role model" for mentally handicapped groups, but for his mother He Zi, this road is not easy.

At first, in order to be able to continue to support Yu Hengxin's social role, He Zi was ready to hire an employment counselor (a professional who continuously provides employment training for people with mental disabilities in competitive workplaces), but after consulting with various institutions, he found that there was hardly a suitable employment counselor in the social system. An agency staff member told her that even if there was, she would have to wait.

Fortunately, with the help of the employment counseling provided by the company, Yuheng survived the difficulties of work. In order to take care of his son's life, He Zi gave up everything in Shenzhen and stayed with him in Shanghai for three full years.

▲ Mentally handicapped youth working in a cotton weaving factory in Shenzhen. (Photo by the old dog)

But not all people with mental disabilities involved in the work can be as lucky as Yuheng. "If a person with a mental disability enters the company and falls into a more difficult employment situation, and waits for a year and a half to have support in this regard, then what is the use?" He Zi said, "They need to learn and experience the rules of the workplace little by little in practice, but the workplace is not immutable, and this dynamic process may sometimes be uncomfortable for us ordinary people, which is a huge difficulty and setback for them." So they need ongoing family support and employment counselling support. ”

The needs of mentally handicapped people and their families are also a dynamic process. However, due to the uneven development of rehabilitation institutions and the limited social awareness of mental disorder groups, the family members of mentally disabled people as caregivers and supporters have endured extremely heavy physical and mental pressure under the current weak social support service system, and many parents of mentally disabled people will devote their lives to the life assistance and social integration of children with mental disabilities.

This kind of lifelong care with almost no end in sight is also a problem for families with good economic conditions.

In 2020, Huang Yi, a postdoctoral researcher at Shenzhen University, conducted a survey on parents of mentally handicapped people, practitioners and institutions in the mental disability service industry from all over the country on the current situation and needs of elderly people with mental disabilities and their families. "The vast majority of parents have a common need, that is, children with mental disabilities can 'go out, go out to contact people, go out to contact society', and a small number of parents have clearly put forward the demand for specific services, such as employment services, respite services, etc." At the same time, the lack of community care and care services is a common concern of parents in the long run. Huang Yi, a postdoctoral researcher at Shenzhen University, said.

The report also notes that the definition and narrative of "older services" are relatively abstract. From the age of 9 to 59, it is possible to be classified as a "senior service". Services at the older stage have not yet formed a consensus on specialization and standardization. What professional competencies are required for "older services", and how can they be promoted and evaluated? These are all unclear issues in the mental disability service industry.

This ambiguity also occurs in government departments. "In recent years, a relatively complete management system has gradually been established in grass-roots public services, and many public services have been developed under the management system, such as paying attention to women and children, the elderly, children in distress, domestic violence and so on. But when we surveyed and interviewed community service workers, they all said they had daily contact with people with disabilities living in their communities and their families, but they didn't know how to support them. Shenzhen Shouwang Mentally Handicapped Family Care Association staff said.

"Can we take care of him for the rest of his life?" Do we still have to open a nursing home when he is old? "In the parent exchange group of the elderly mentally handicapped, such cross-examinations often occur.

It's like a severely tilted balance, with the growing and urgent needs of families with mental disorders at one end, and the gaps in the social system at the other end – who provides support and what?

In order to bring the balance back to balance, Liao Yanhui, who is also a parent of a mentally handicapped person, and a group of parents have explored and tried for more than 20 years.

▲In 2001, Shenzhen Parent Resource Center for Autistic People was established. (Courtesy of the interviewee)

04

A 20-year parent-supported quest

In 2001, in an office building in Shenzhen's Luohu District, Liao Yanhui, together with 18 parents in Shenzhen, hand-wrote a questionnaire on a sticky note paper entitled "Questionnaire on Parents' Opinions on the Establishment of a Parent Resource Center." Nineteen parents, drawing the word "zheng" on the questionnaire one by one, established shenzhen's earliest parent resource center for autistic people (now Shenzhen Shouwang Family Care Association for people with mental disabilities), and since then embarked on the road of self-help and mutual assistance.

The idea of parental help stemmed from Liao Yanhui's experiences in Beijing and Hong Kong.

In 1998, at a special school in Beijing, an elderly mother, standing in the hallway of the school, was beaten by an autistic child in adolescence. At that time, Liao Yanhui's child had just been diagnosed with autism, and when she saw that scene, she was both sympathetic and confused. I don't want to be such a mother, she said to herself in her heart. Two years later, in Hong Kong, she saw a different kind of life for parents of mentally handicapped people: social public services can cover the various needs of autistic people and their families, and parents have free time to sit together and drink tea and communicate.

Sympathy, confusion, envy, and longing are intertwined into Liao Yanhui's expectations for the future, and are also the most simple starting point for parent mutual aid organizations - to do family support, so that children get respect and the services they need, so that parents can live a little easier.

In an era when most people had never heard of autism, let alone the concept of mentally handicapped people, this was destined to be a difficult and lonely road, but Liao Yanhui and her parents did not retreat.

At that time, there were no services for autistic children on the market, "then do it yourself." Liao Yanhui said.

In January 2004, parents got together again and decided to split the cost and start a rehabilitation service for their children. In the end, with the support of the Luohu District Disabled Persons' Federation, the Luohu District Special Children's Rehabilitation Center was established.

In 2005, the "Shenzhen Autism Research Association" was registered in the Shenzhen Civil Affairs Bureau. While learning from advanced experience, Liao Yanhui and his parents practiced in Shenzhen, holding the country's first autism care week, autism seminars in four places across the straits, Shenzhen's first exhibition sports meeting, exhibition art festival, living rainbow summer camp, communion neighborhood festival and so on. China's earliest research on applied services for people with mental disabilities was also born at this institution.

▲In 2003, the Shenzhen Parent Resource Center for Autistic People held a community activity for autistic children. (Courtesy of the interviewee)

"In fact, the more I do in this field, the more I feel the great pressure on my family, both economically, spiritually, and from society." Children grow, grow, and grow old, and these life-long service needs are missing. So as parents, we must take the first step, only if we do, the society will see our children, in order to get more help. Liao Yanhui said.

In 2009, in order to allow children with mental disabilities to live with dignity without their parents, Liao Yanhui organized three private non-enterprise service organizations - Shenzhen Luohu District Renai Rehabilitation Service Center, Shenzhen Ren and Social Work Service Center, and Shenzhen Renshan Rehabilitation Welfare Institute, respectively, to provide all-round professional services for the three service segments of children, adolescents and families, and improve the entire support service system.

At the same time, other rehabilitation institutions for children with mental disabilities began to appear on the market, but with them were uneven service levels.

"It wasn't long before I was happy, and I had to worry again." Liao Yanhui said that in 2010, this group of parents made another amazing move, launched the "Heming Autism Service Industry Network" to improve the ability of the entire mental disability service industry by providing professional skills and organizational skills training to industry institutions. As a result, parents have changed from providers and users of services to supervisors.

A friend asked Liao Yanhui: "Your thinking is very strange, oh, you actually spend money to cultivate your own competitors." Liao Yanhui smiled, "Because we are parents, we hope that our children have nearby, diversified, affordable, and high-quality services, and we hope that the entire mental disability service industry will develop rapidly more than anyone, and only when there are enough services and form healthy competition, we and our children will have a choice." ”

▲ In 2001, the questionnaire before the establishment of the Shenzhen Parent Resource Center for Autistic People. (Courtesy of the interviewee)

The trickle of water will eventually merge into a river.

Since 2016, relying on the One Foundation's "Parent Gas Station Project" funding program, Shenzhen Shouwang Family Care Association for People with Mental Disabilities has begun to plan the "Family Support Service for People with Mental Disabilities", which is organized by parents in 50 regions across the country to carry out services locally. From 2018 to 2020, the Association invited experts and scholars to work together to conduct data research and action research on family support policies, and to provide research data and other support for the proposals of this year's two sessions.

During this year's two sessions, Yu Minhong put forward three suggestions in the proposal: establish a family-centered family support policy system for the disabled; establish a new family allowance system for the disabled; vigorously develop family support services, improve the support ability and resistance of disabled families, and release the family labor force. "This proposal speaks to the hearts of our parents." Chen Pi said.

The proposal suggests from a top-level design perspective, and pilot attempts by civil society organizations and grassroots governments began earlier.

In July 2020, Shenzhen Shouwang Family Care Association for People with Mental Disabilities and Xiangmihu Street in Futian District jointly held the "Seminar on Exploring the Community Support System for Families with Disabilities". At the meeting, Liao Yanhui shared his past practical experience in family support for people with mental disabilities, and hoped to promote the implementation of family support services for people with disabilities at the street level.

That was the first time that the Shouwang Association tried to cooperate with grass-roots government departments as a non-governmental organization, and although cooperation was not achieved in the end, Liao Yanhui still believed that "it was still a very valuable attempt." "We are still exploring and trying, hoping to make a demonstration site for family support, and then promote the experience to all over the place." Liao Yanhui said.

Liao Yanhui still clearly remembered such a thing. In 2008, Liao Yanhui won the "China Charity Award for The Most Caring Charity Model" award from the Ministry of Civil Affairs of the People's Republic of China, and the day before the award ceremony, a leader of the Ministry of Civil Affairs asked her: "Why did you start such an organization?" After listening to Liao Yanhui's story, the leader was silent for a long time, and finally said to her, "Everything will be fine." ”

Everything is really going well. After more than two decades of "exploring the way", the road to the family support system is now clear: based on parental assistance, the development of services to respond to the needs of families - the formation of empirical experience, the development of family support policy research - the formation of service systems and policy recommendations, the advocacy of the establishment of family policies for the disabled - through the leverage of policy, to promote more services to the society - and finally, to let more families access support services from all walks of life.

In the ending of the movie "Ocean Paradise", which is about autistic people, the protagonist Daifuku gets a cleaning job at the aquarium and can live independently. This is just as Liao Yanhui and all parents with mental disabilities are looking forward to the future: "I hope that this seed we sow can eventually grow into a towering tree." ”

(At the request of the respondents, some of the respondents are pseudonyms)

Resources:

ZHOU Ling. Blue Book on the Status of Mental Disabilities in China. Beijing:China Society Press, 2021.02.

Huang. Family Support for People with Mental Disabilities: A Study of Needs, Current Situation and Development Recommendations. Institute of Disability and Public Welfare, Shenzhen University.

Liao Huiqing. Research on Family Support Policies for People with Disabilities: Current Status, Challenges and Future. South China Agricultural University.

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