The "children of the stars" are over 40 years old, and their parents are old, what about the two generations?
The theme of the 17th World Autism Awareness Day is "Whole-Life Service, All-round Care". This means that, outside of the home and school, autism spectrum groups need support from all levels of society.
What parents are most concerned about is how to have a reliable guardianship organization or guardian to let their children receive effective care by virtue of the property left by the family when they are old or even absent? In Shanghai, Jinzhai in Anhui Province, and other places, parents are planning and taking action. They say that this is a "closed-eyes project" for "people, money, and places".
What kind of situation have parents encountered in their actions, and what can the government, enterprises, and social organizations do? From the observations of recent years, interviews with relevant practitioners, and the research results of parent groups, the researchers of The Paper have tried to describe and summarize them.
Intended guardianship, a difficult problem in reality
For pedigree families, the compulsory education stage before the age of 18 is relatively relaxed. In preschool, parents are anxious about how to intervene and how to improve their children's abilities. At school age, depending on the child's ability and status, parents can choose a special school or a regular school. At this time, there is more support for integrated education, and parents have more free time. After the end of compulsory education, children need round-the-clock support from their parents, whether they are engaged in supported employment, or receiving care at home and doing simple household chores. Parents can also be anxious about how their children can be better socialized.
18 years old is just one of the cliffs. By the age of 60, the pedigree will face a different kind of cliff. The management counterpart department has changed from the Disabled Persons' Federation to the Office on Aging, and they are no longer a group with special needs, and it is difficult for them to receive targeted care. At this time, if their parents are still alive, they are already in their eighties and nineties, and they still need care and support.
Fangtan Cafe in Shanghai is a café that supports supported employment for people on the autism spectrum. Wang Yuntu
Faced with the questions of "how to manage the two generations" and "what to do with the children after the death of the parents", the anxiety level of older parents is higher than that of the previous two stages. According to international studies, the average life expectancy of people with autism spectrum disorder is 54 years. In fact, the first batch of people on the spectrum who were diagnosed in China were over 40 years old. Parents have little energy left to place their children on their own terms.
Some people with an adult spectrum live in nursing homes, often lacking companionship and activities, and it is difficult to talk about a good quality of life. If they have emotional problems, challenging behaviors, etc., the nursing home is likely to refuse to accept them for the personal safety of other elderly people.
"This is not really reflected in the government's systematic public service layout. As we enter adulthood, people on the spectrum will have a variety of complex needs. Chen Rongdong, chairman of the Wujing Huiling Community Disability Service Center in Minhang District, Shanghai, said.
Wujing Huiling Community Disability Service Center, Minhang District, Shanghai, a handicraft activity. Photo courtesy of Shanghai Huiling
The center is currently the only day care facility in Shanghai for people with an adult spectrum. Physically and mentally exhausted parents, many of whom are single mothers, can seek care support and rest time. Adult pedigrees have their own ways of perception and expression, and it is often difficult to take care of them. Most families are the primary caregiver and have all the caregiving experience.
Since parents are willing to trust care institutions, Chen Rongdong believes that for specific cases, institutions should pass on their accumulated care experience to those who will take care of them in the future, so that they can precipitate into living files that can be empowered.
This is exactly the specific approach of "full-life service, all-round care". But the question is, to whom exactly is it passed on?
This involves "what happens to the child after the death of a parent". At the national level, courts, civil affairs, village neighborhood committees, and other such bodies may appoint guardians on the basis of their authority. However, in practice, it is often impossible to find a suitable person or professional guardianship organization. In terms of mechanism design, in addition to the need to appoint guardians, it is also necessary to supervise guardians, and supervisors are even more difficult to find. Finally, public guardianship can often only be carried out by the grassroots level, and the Civil Affairs Bureau is the main body of estate management. The progress of these tasks requires the preparation of various materials to connect with different departments according to the property and physical conditions, and the characteristics of the pedigree people, which is often difficult for grassroots personnel to move forward smoothly. Although people of insight have proposed to formulate a "Manual for the Implementation of Public Guardianship" to give necessary guidance for specific operations, what the grassroots can do is limited after all, it is difficult to take into account the diverse needs, and it involves a heavy cost burden. This cannot be the way all genealogical families can be trusted.
Parents who are still able to do so are also planning for "intended guardianship". What kind of people and institutions can be found to be intended guardians and supervisors? How can the money be used most effectively for the children? The question at hand is, how can we find a place to take care of the children and settle down in our old age? In the final analysis, it is a question of trust.
Parents gather together and explore first
"Elderly parents of people with mental disabilities face complex caregiving pressures. They are not reluctant to talk to so-called professionals, but need long-term peer support. In the social work profession, it is called 'Future Planning', which means helping people make plans according to the characteristics of their families. Chen Rongdong said.
This may be the original driving force for the formation of Shanghai Putuo District Aituo Care Service Center. Some parents of mentally handicapped families place their adult or minor children in nursing institutions due to old age and illness. Entrusted by these parents, they organized a group to visit their children. After that, we carried out home visits, hoping to establish an emotional connection with the children in advance through regular visits by volunteers. "Young parents are encouraged to visit their children from now on, so that they can enjoy the visits of their young parents in the future. ”
A visit service organized by Shanghai Putuo District Aituo Care Service Center. Love to entrust the figure
Such spontaneous group visits are only for spiritual comfort, not for legal guardianship. Parents who share similar deep joys and sorrows will deepen their trust in each other during the visit. Everyone huddles together to keep warm, solve common anxieties, and also reduce the burden on the country.
This is where the potential for social self-organization lies. It may develop into a formal guardianship or supervisory body, whether appointed by the court or by the parents by will, which can play a stable and long-term role. Parents can also designate that if they and their children are no longer available, the remaining assets can be used to fund groups of parents in distress or such parent organizations. And so on and so forth.
There are also parents who start with a place. For example, the Star Town in Jinzhai, Anhui Province, was originally an idea of a parent of a pedigree child who works in Beijing and whose hometown is in Jinzhai. From the initiation and planning in 2017, to the first batch of 14 families to join, to 70 like-minded shareholders from all over the country, Star Town will welcome people to move in in the summer of 2024.
It takes time to build trust between people. The operation of the town requires staff and professional care. These things need to be carefully thought out and done slowly. In March 2024, a guardianship agency was established to serve Star Town, whose business scope includes guardianship and supervision, estate management and legacy giving. There are plans to make special trusts in the future. These efforts are necessary support in the chain of life for both generations.
In Shanghai, a family on the autism spectrum, the mother is leading the children and volunteers to rehearse a family play. Wang Yuntu
Back in Shanghai, several streets and towns in Minhang District are also building spaces such as "Star Homes" for older people with a spectrum of people. The key to making these spaces truly supportive is to connect with the parent community so that their issues can be addressed. Focusing on specific people will further enhance social capital and reduce the burden on public finances in the future.
Create a friendly environment for a common future
The actions of these parent groups reveal a simple truth, caring for others is caring for your future self. Fundamentally, it is necessary to create a genealogy-friendly environment for the entire society so that the adult spectrum can live with dignity.
The more supportive networks, the better. For example, at the Fangtan Cafe on Anyuan Road in Shanghai, there are always autism spectrum staff walking around, and parents sitting in the store, watching their children work while drinking coffee and chatting. In the baking room at the back of the house, there are young people from the spectrum making snacks. Every Saturday, the Lili Time Cafe on Mengzi East Road invites the family drama club of the autism spectrum to perform music. The team that runs such a café, and the foundations behind it, are in fact potential guardians and overseers, at least for now, as part of a supportive network.
In the Fangtan Cafe in Shanghai, in a conspicuous place on the bookshelf, picture books about autism are placed. Wang Yuntu
In Anhui Jinzhai Star Town, parents will also take their children out of the town and come to the county seat to seek medical treatment or shopping. After a long time, the villagers also recognize them, will greet them warmly and kindly, and will also organize caring activities together on Autism Awareness Day. It all happens naturally.
A social atmosphere of mutual visibility and care will lead to more potential trusting intended guardians and trustees. For cities with a deep aging population, this kind of approach can serve as a model and lead. For individuals, in concrete caring actions, they can experience a meaningful life, and the gratitude and sense of accomplishment they get cannot be obtained by making money. It's not so much about making merit as at least educating your children on home. In this way, show everyone around you that this is the future worth looking forward to.
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