The 2022 National Two Sessions have ended, but how to implement the proposals of autistic groups involved in the two sessions is still the focus of continuous attention.
Huang Qi, a member of the National Committee of the Chinese People's Political Consultative Conference, has proposed for autistic patients for three consecutive years, calling for more policy support. In her proposal, she pointed out that China's policies for the care of autistic patients are more inclined to underage children, and that policy support for older and adult patients is almost blank.
Huang Qi suggested the establishment of an autism family health care center, which integrates treatment, training, rehabilitation, pension and other functions, so that mild autistic patients with certain work ability after training can get jobs suitable for them, so that autistic patients have the opportunity to learn human interaction and skills in the center.
For the care of elderly autistic people, Beijing Huiling is a community-based service organization for people with intellectual disabilities and autism over the age of 16. Many parents who cannot take care of their children have found this place, which has become the "second home" for many elderly autistic people.
Huiling's model, as Huang Qi suggested, allows mild autistic people with certain work abilities after training to obtain jobs that are suitable for them, but the current dilemma is that after the lease expires, they will also be forced to move like the previous custodial place in Xinsi Hutong.
Hui Ling had previously partnered with a multinational backpacking company that brought foreign tourists to the small courtyard to watch Hui Ling's students perform as part of the trip.
The students used the performance as a game, such as bouncing around with a mask on a big-headed doll. They find it fun, and it's also a workout for them. The tour company will pay for it, according to the number of performers, 60 yuan per person. At the same time, foreign tourists may make donations on the spot.
However, as the lease for the small yard expired, the homeowner raised the rent substantially. Hui Ling could not afford to pay almost double the price and had to move. This makes it impossible to continue the previous cooperation with the travel company, which also means that one of Huiling's sources of income has been cut off.
According to media reports, Huiling currently has more than 60 students, each trainee according to the situation, the average monthly payment is about 3,000 yuan, some orphans and poor families will also be appropriately reduced fees, but these fees are far from enough huiling to pay rent and pay salaries to teachers, and social donations are not fixed.
As a direct result, the economic pressure has caused a lack of professional talents, and the vicious circle has forced Huiling into a desperate road that is almost impossible to continue to operate.
Similarly, taking stock of domestic care and training institutions for elderly autistic people, Connor Zhou set up a rain roastery in August 2014 to teach older autistic people to learn baking, hoping to let them master certain vocational skills according to their characteristics.
Conner is also working in this direction. However, like Hui Ling, Connor Zhou is also facing financial pressure, for example, there are only 4 students in a baking class, but it needs 5 teachers including pastry chefs to provide services, labor costs, field rent, raw materials and equipment costs, only rely on the tuition fee of 100 yuan per class is not balanced, relying on subsidies from the Disabled Persons' Federation and various foundations.
Because of this, in more than 6 million adult autistic families, the ultimate anxiety of parents is "I am dead, what will happen to the children?" "It has always been a difficult proposition.
When more and more families with autism begin to use real estate mortgages to make up for the rehabilitation and care costs of the child's second half of life or even a lifetime, accompanied by the multiple dilemmas of excessive family pressure, worrying institutional operations, skills training and supportive workplaces, I can't help but ask a soul question -
Where do older people with autism go?
In limited media surveys, most adults with autism end up being "confined" at home or in psychiatric hospitals due to the lack of support for vocational training, employment, and care placement. A small number of non-profit organizations provide a small number of jobs for some autistic people, and very few autistic people are really employed.
The "children of the stars" are still difficult to integrate into the human world as adults.
In 2016, the "Wise House" of Beihua University released the "Report on the Employment Status of Elderly Autistic Youth", which pointed out that due to the lack of social service system for the elderly autistic group, the lack of preferential policies, insufficient funding and other factors, adolescents and adult autistic groups have been plagued by problems such as vocational education, supportive employment and pension placement, employment services and employment assistance and rehabilitation subsidies are difficult to implement, and older autistic patients are still in the stage of self-exploration in private institutions due to high employment costs and few posts.
Employment is only one of the issues of social integration for people with autism. Another problem is that due to the lack of older rehabilitation education or care institutions, after this group bids farewell to the compulsory education stage, most people are in an embarrassing situation of nowhere to go, and eventually they can only be "kept in captivity" at home.
Not only is the living space getting narrower and narrower, but at the same time, due to the lack of guidance from professional teachers, many autistic patients will have a retrogression of the intervention effect. Institutional teachers serving older patients are scarce, there are no professional teachers, and money cannot buy the services they need.
In April 2017, Jiang Xiaobo, a member of the Jilin Provincial Committee of the Chinese People's Political Consultative Conference, wrote in the People's Daily that the elderly and adult autistic groups over the age of 15 are "no one in society to take care of them" except for their families, and in addition to employment, they are also facing many problems in maintenance, medical care, and old-age care. Among them, what needs to be solved urgently is the lack of place to go and the lack of basic living security.
However, looking at China, at present, there are very few intervention institutions for autistic patients for older autistic people.
According to the "Report on the Development of China's Autism Education and Rehabilitation Industry", about 90% of the current autism rehabilitation training institutions are private institutions, and many of them are spontaneously organized by parents. These institutions receive modest state subsidies. In 2006, the China Disabled Persons' Federation included autism in the category of mental disabilities and explicitly included it in the scope of services for the disabled. The national "Colorful Dream" autistic children's rescue policy stipulates that the central government provides 12,000 yuan of rehabilitation training subsidies for children aged 3 to 6 years old every year. This means that the funding sources of institutions related to older autism are still mainly dependent on parental contributions.
For older people with autism, daycare services are the most urgent need. Expensive rents make it difficult for few similar institutions.
In September 2019, the autism public account "Rice and Millet" and other media reported that "Nanjing, the elderly autism care institution was sued by the Disabled, and the founder was sentenced to 1 million yuan in compensation!" The news also described in detail the difficulties of the well-known domestic elderly autism care institution "Ningxin Sunshine Home".
On December 31, 2017, the cooperative relationship between Ningxin Sunshine Home and the Disabled Persons' Federation officially ended.
Liu Qiang, who has been a director for 5 years, used the balance of nearly 100,000 yuan on the institutional account to dismiss the still-incumbent special education teacher, and then signed his name on the financial handover list and walked out of the door of his home.
He didn't bring anything but a financial ledger.
At the beginning of 2020, Today's Women's Daily interviewed the founder of "Star Dream Home" under the title of "AA System, 7 Parents in Hunan Built a "Star Dream Home" for Their Elderly Autistic Children".
This almost "utopian" "Star Dream Home" is held together by the parents of 7 autistic people, dividing their work and cooperating. Among them, there are university staff, state-owned enterprise employees, government civil servants, construction business owners and other different occupations and identities.
At present, the support of "Star Dream Home" from the government is still in the declaration, therefore, each student needs to pay more than 4500 yuan per month to maintain daily basic operations, according to the current scale, "Star Dream Home" annual operating costs need more than 1 million yuan. The dream of these parents is to make the "Star Dream Home" a lifelong health base for autistic people similar to japan's "Beech Town".
At present, the source of funds for "Star Dream Home" is mainly self-financing by parents, and parents are also actively applying for care projects from relevant departments. On the other hand, parents are still actively striving for social love donations, furniture procurement, winter heating equipment, constant pressure water supply equipment, protective facilities, sports rehabilitation equipment, outdoor "wind and rain corridor" construction, and even chai rice oil and salt, they are all made into public welfare small projects, and strive to win the support of all sectors of society, "We do not want to consume suffering, 'Star Dream Home' should be a happy public welfare platform."
Today, this star dream home does not know whether it is still continuing. However, the practice and idea of analogous to Japan's "beech land" has become a benchmark in China.
Benchmarking Japan's "beech town" model, can domestic elderly autism care institutions replicate it? How did the founding of Beech Country work? Can it be the dawn and hope of the care model for older autistic people in China?
Located in Kawagoe City, Saitama Prefecture, north of Tokyo, the adult autism care organization "The Hometown of Kawagoe, a social welfare corporation", was founded 28 years ago by 21 parents of autistic children who raised funds from their own strength. The institution provides a shelter factory for older children with autism, and currently cares for about 100 adult autistic people over the age of 18, where adults live and work.
The institution has several parts such as the Severe Autism People's Care Center (Hatsuyan House), the Welfare Factory (their welfare factory is the only welfare factory in the world dedicated to autistic people), CAREHOME (family-style residence for autistic people), the work field, etc. Ms. Suda, the main founder of "Beech Town", is eighty-four years old, is currently the vice president of the Japan Autism Association, and her son with autism is also fifty years old, living and working in the "Beech Town". Her philosophy is that she hopes that the autistic people who are cared for here will have a rich and happy life, with emotions of joy and sorrow, and a sense of responsibility as a person.
There are many buildings in the "Beech Country", each with about four floors, and each room is inhabited by an adult autistic person. These patients begin practicing life skills and labor skills at a very young age. The manager here assigns different types of work according to the degree of illness of the children, such as the assembly of container boxes for severe autistic people, a group of 2 people, cooperating with each other, and using air guns to beat air nails. The most shocking thing about the visit was a 50-year-old patient whose parents were no longer there, but he was able to survive there and live a very quality life.
Several workshops in the land of beech are divided according to the function of the child. Using the repetitive and stereotypical behavioral traits of autism, we can choose different occupations for our children and generate value for the development of society. At the same time, the training of autistic people enables autistic people to obtain the same emotional and responsibility as normal people.
After returning from a visit to Japan in 2020, Professor Jia Meixiang, a domestic autism expert and Professor Jia Meixiang of the Sixth Academy of Peking University, joined hands with the Beijing Autism Rehabilitation Association to build a platform in the 798 Cultural and Creative Park, the main purpose of which is to incubate the vocational skills training of adult autistic children.
At the opening ceremony, entertainers Lin Yilun and Na Ying were invited to raise funds with the children, and at the same time, some paintings of the children in the association were taken out for auction. Cash from donations and charity sales can pay rent for two years at the 798 base. There are music lessons, art lessons, baking lessons, flower arrangement classes, etc. All art teachers participate as volunteers at no cost. Now hatch a band of older autistic groups, a choir of mothers of older autistic groups, who can travel across the country to perform and let more people know the current situation of older autistic groups.
798 AL-QA children participate in a variety of activities, such as sketching, picking, and docking various businesses. In addition, we have a counter where we take cookies made by children to the charity sale.
The continuation of the 798 base continues with difficulty.
In 2020, Jia Meixiang said in an interview with the monthly magazine "Mayor of China" that when she retired, she wanted to do a rehabilitation training institution for the elderly autistic group, and especially wanted to build a shelter factory for autism, like the "town of beech", which can solve the problem of children's employment and survival.
Perhaps, the domestic "beech town" road is very long and promising, but for the ten million autistic families in China, it seems that they cannot afford to wait.
Reference Articles:
The Beijing News peeled the onion: "I am dead, what will happen to the child?" "The Ultimate Anxiety of Older Autistic Families"
The Paper: "Where have adult autistic people gone: very few jobs, some parents want to sell their homes to their children for the elderly"
Zhongyuan News Network: "Elderly Autistic Patients: Lack of Care Institutions Becomes parents' Deepest Worry"
Today's Women's Daily: "AA System, 7 Parents in Hunan Built a "Star Dream Home" for Their Elderly Autistic Children"
China Mayor's Magazine: "Jia Meixiang: From the Land of Beech to 798, Where Will Our Children Go in the Future"
Rice and millet: "Nanjing, the elderly autism care institution was sued by the disabled, and the founder was sentenced to 1 million yuan in damages!" 》
[Yi Yuntian, not a famous writer. Xu Hengfu, born in Lanzhou, now lives in Zhengzhou. Original and in-depth entertainment film and television reviews, interpretation of current affairs hot spots, family education analysis. Do not go with the flow, there is an attitude, more temperature. Sina Weibo: Yi Yuntian; WeChat public account: Yi Yuntian said (ID: yiyuntianshuo)】