Editor's Note: 2 April 2022 is the 15th World Autism Day. With the development of medicine and the popularization of concepts, children with autism have begun to pay attention to the society, and many volunteers and institutions have begun to intervene in the childhood stage of autism. But parents still have a concern: "I'm old, what will happen to the children?" "Support for older people with autism is still far from enough.
It has been exactly 40 years since the earliest diagnosis of autistic children in China.
In 1982, Tao Guotai, a professor at Nanjing Brain Hospital, published a paper reporting 4 cases of children, which opened the cognition of autism in China. People call them "children of the stars" and come to understand that they are special children who need rehabilitation, but cannot be completely cured.
But we often forget that the "children of the stars" also grow up to become "heart youth" (as the community of people with mental disabilities call themselves). 80% of people with autism are adults, facing social integration dilemmas, receiving severely inadequate attention and services, often becoming a heavy burden on families.
On the occasion of the 15th World Autism Day on April 2, 2022, Nandu Observation sorted out research reports and institutional data, focusing on the elderly autistic group, hoping that the social service and security system would continue to improve, so that growth would no longer be a fall for the stars.
For 80 years since its discovery, the cause of autism remains unclear, but the incidence is increasing every year. The prevalence data released by the CDC in 2016 was 1.47%, which has become 2.27% by 2021. South Korea once released a figure of 2.6%. China lacks an overall census, and the Colorful Deer Autism Research Institute estimated the incidence of autism for the first time in the "Report on the Development of China's Autism Education and Rehabilitation Industry" released in 2015, which was 1%. In terms of population, this population exceeds 10 million, of which more than 2 million are children, and the number is increasing by 200,000 per year. Sun Menglin, president of the Colorful Deer Autism Research Institute, believes that this is only a conservative estimate, because what can be diagnosed is often moderate to severe, and many mild children may not be detected.
Sun Menglin mentioned in the 2019 "Report on the Development of China's Autism Education and Rehabilitation Industry III" (hereinafter referred to as "Report III") that the lifetime rehabilitation cost of an autistic child in the United States amounts to more than 10 million yuan. Lei Dongzhu, an obstetrician and gynecologist and deputy to the National People's Congress, mentioned in the proposal for the two sessions in 2022 that the cost of rehabilitation training for autism is at least 60,000 yuan per year, and the time takes 6-7 years or even longer. In many parents' calculations, this fee even reaches 100,000 per year. Due to insufficient early understanding and repeated medical consultations, some parents spend hundreds of thousands or even millions. These parts are not included in medical insurance, and there are some subsidy policies in various places, but it is a drop in the bucket for long-term recovery families.
According to the "2020 Child Development Disorder Industry Report" (hereinafter referred to as the "Developmental Disability Report") jointly released by the School of Special Education of Beijing Union University, the Beijing Autistic Children's Rehabilitation Association, and Peking University Medical Brain Health, the researchers interviewed more than 700 families with child development disabilities, and 20% of the families' monthly rehabilitation costs were much higher than their income and could not make ends meet. Report III notes that many families are cared for and accompanied by a single parent full-time, even with both parties giving up their jobs, and 50% of families are divorced, with many single parents. Some parents have left their homes, and some families have returned to poverty due to illness.
▲ The cost of rehabilitation for children with developmental disabilities as a proportion of household expenditure. Child DevelopmentAliencies Industry Report 2020
In 2006, autism was included in the disability assessment. Since then, the state has issued a series of social policies on children's basic living security, compulsory education and rehabilitation and medical care. The Disabled Persons' Federation provides different standards of subsidies for the rehabilitation of families in difficulty, and more than a dozen provinces and cities across the country provide financial assistance to children with autism and their families. But care for older patients is still not covered by policy.
▌ The growth of rehabilitation institutions, the fault line of older services
Since autism is incurable, lifelong intervention is required from a lifelong perspective. In fact, support and service systems ranging from early screening and intervention to integrated education, vocational training and social integration, and old-age care should be established. Among them, groups over the age of 16 need services such as life, employment, and community integration.
▲ A brief analysis of the needs and services of the autistic group. Tencent Public Welfare Partner
According to the Developmental Disabilities Report, the number of autism education and rehabilitation institutions in the country has grown rapidly, from less than 30 before 2008 to 2238 in 2019, and the distribution of institutions has gradually developed from concentrated large cities to various regions. Sun Menglin said that the service capacity is more than 300,000 people, but this is only 3% compared with the number of people in the group.
Child DevelopmentAliencies Industry Report 2020
Most of these institutions focus on the education and rehabilitation of children aged 0-7 years, and the elderly population has a strong demand for services, but there are few providers. According to the overall survey of the Developmental Disabilities Report, more than 60% of child rehabilitation institutions are for children under 8 years old, 17% for children aged 9-14 years, and only 2.38% provide older vocational education. Less than 2% of rehabilitation practitioners serve groups over the age of 13. This is also partly a reflection of the current state of the autism sector: as the age of the autistic population, the number of service providers for the older age group has fallen off a cliff.
Beijing Fengtai District Lizhi Social Work Office (hereinafter referred to as Lizhi) is a non-profit organization that mainly serves people with mental disabilities over the age of 15. They conducted a questionnaire survey of 758 parents in conjunction with a consulting agency, of which 60% were parents of autism, and the mental youth of different disorder categories had a large commonality in their situation.
The survey found that nearly 50% of school-age children aged 7-18 stayed in rehabilitation institutions or stayed at home, without schooling. After the age of 18, there is a serious lack of organizations and services related to the heart of youth. 40% of young people aged 19-30 can only stay at home, and only 6% are employed. After the age of 30, 26% of young people will live in community day care centers, and 3% will be employed.
Families are very much looking forward to the continued access of professionals to the support of professionals and the ability to lead independent lives as adults, but less satisfied with access to external resources for support and assistance. Parents in the older age group believe that their children urgently need home-based self-reliance training and supportive employment services. They prefer their children to live in the community with themselves rather than being sent to a care facility.
Feng Lu, director of the Lizhi Center, made a general description of the industry dynamics in the research report: in recent years, capital has fully entered the industry, many small-age institutions serving 0-6 years old have obtained financing, and first- and second-tier cities have been saturated, covering the fifth and sixth lines. The government has subsidies for young age services, many medical institutions and scholars advocate not to miss the golden dry expectations, and families are more willing to spend money on rehabilitation, so the age market is extremely hot. However, she proposed that it is actually impossible to completely remove the hat, and it needs a full life cycle of rehabilitation, hoping that parents will have a long-term planning awareness.
The policy for school-age children is being implemented gradually, and although the quality of education has yet to be improved, it is now generally possible to go to school. However, after the end of the nine-year compulsory education period, there is a shortage of transfer services and adult services to enter the society. Adult services, which were supposed to focus on supportive employment, have now been transformed into placement programmes, i.e. placement in care facilities.
▌ More than 90% have employment potential, but insufficient social support
Sun Menglin introduced at the "Report III" press conference that statistics believe that among the autism spectrum population, mild accounting for about 10%, through effective intervention can be independent social life; for the other severe people, first need to solve the life of self-care and social behavior norms, improve their quality of life at the same time, reduce the cost of family care; for 70-80% of moderate population, the intervention effect should be good should be able to shelter employment, society should give support.
At the "Status Quo, Challenges and Future of Employment Services for People with Mental Disabilities under the Epidemic" salon previously held by Nandu Charity Foundation (hereinafter referred to as the Employment Salon), Li Hong, chairman of the Beijing Xiaogen Foundation and director general of Rongai Rongle, concluded that different types of mentally disabled people are jointly reflected in social participation as obstacles in communication, learning and social interaction. Among them, the autism spectrum group accounts for more than half of the proportion.
When studying data from developed countries, Li Hong found that this group can still achieve an employment rate of more than 30% despite employment difficulties. Some domestic surveys estimate that the employment rate is only 2%. The proportion of employment is rising in many areas, but she believes that it is likely to be untrue employment linked to a disability certificate. When families receive some welfare compensation, parents worry that if employment fails, they will not be able to receive benefits, such as the lack of places in community care institutions.
Li Hong observed that under the current integrated education, some young people with hearts have gradually entered ordinary schools, but vocational literacy training is very insufficient. She calculated a data: "There are about 500,000 mentally disabled people aged 15-19 who are suitable for secondary vocational education, but only about 3,000 people can now attend vocational high schools." ”
Love and pleasure
Founded in 1990, the Guangdong Huiling Foundation for the Support of People with Intellectual Disabilities (hereinafter referred to as "Huiling") is the first social organization to serve young people with a heart, promoting the community-based and normalized life of adults with mental disabilities. Meng Weina, the founder of Huiling, recently proposed at an event organized by the autism rehabilitation institution "Rice and Millet" that "work" should be emphasized rather than "employment", because many jobs are not real jobs, and there are tax risks associated with companies with disability certificates. In fact, under the influence of the epidemic, the pressure on enterprises has increased, and many young people who are already employed are unemployed.
Can the employment of this group meet the real employment standards, with labor contracts, five social insurances and one gold, and equal pay for equal work? Hui Ling has tried many employment methods, including car washes, orchards, etc., serving thousands of young people, but Meng Weina believes that it has not achieved real market-oriented operation. She said that there is indeed a problem of ability to meet the standards of young people, and whether they can be like ordinary people need to put a question mark. But they will certainly be able to enter the work, even if the income does not meet the minimum insurance standard, they can still get policy subsidies, which is an ideal state.
"The jobs developed by our service agencies are really insufficient. Not all young people want employment, sometimes parents want them to be employed, they have independent preferences and choices. I hope that parents will not be particularly anxious, and first accept that their children are autistic, which is what the whole society should bear. Meng Weina expressed another attitude toward anxious families.
Cao Jun, the father of the mentally handicapped boy, founded the Xi'er Car Wash Center and made more commercial attempts, hoping that his children would be like ordinary people. Employees of the car wash center follow the minimum wage, have labor contracts and social security, and take the subway to work like ordinary people. Cao Jun discussed with Meng Weina at the "Rice and Millet" activity, and the car wash center was gradually able to wash clean, meet industry standards, and charge the same as its peers after exploring and improving. However, in the comparison, it was found that other companies need two people to wash a car, and Xi Xian Er needs five or six people to cooperate. But Cao Jun believes that in this suitable industry and a large enough market, Xi Yan'er can survive in the same industry.
Cao Jun is thinking about more models, and looks forward to the possibility of exploring business models to support care centers in the future. He suggested that street offices across the country can set up car wash enterprises, the government provides venues, low investment, easy operation, can solve the employment problems of many adult mentally handicapped groups, and can also serve the community.
▌ Career counselor who connects stars and businesses
We support families of people with mental disabilities and provide supportive employment for older young people. Among them, the role of employment counselors is very critical, they assess the status of the young people themselves, develop suitable positions based on the employment needs of specific enterprises, provide training guidance, until stable employment is achieved and then withdrawn, and tracked afterwards. For example, the car wash post, "the standard car wash procedure is more than a dozen, many young people can not do fine motor processing, let them wipe the body, wheel hub these large parts, fine movements to other colleagues to complete, does not affect the operation and management of the entire store."
In 2015, Li Hong and her colleagues went to Germany to investigate and saw that there were 300 employment counselors in one region, achieving an employment rate of more than 30% for the young people. The government provides tiered support at the educational level and subsidizes businesses to encourage them to open up internship opportunities to their young people.
With the support of Rong Ai, Wei Lai, a young man with a heart, has been working in the Zarah coffee shop for 6 years, working from 9:00 a.m. to 3:30 p.m. After work at five o'clock and on weekends, the coffee shop did not give her a shift, but she arrived at the store an hour earlier than others, did simple cleaning work, did not affect the operation, and received reasonable support from the store.
Wei Lai's mother could not imagine that her daughter could be employed. But society provided a new normalized environment, and Wei Lai had a new life. She can remember the regular customers in the store, wear the beautiful ring given by the lady in the store, and have her own marriage. She shared at the salon: "Mom can swim and learn to dance, Dad can make his own collection, don't always worry about me, the family is getting happier and happier." ”
Rongyi Consulting is a social enterprise that provides disability integration consulting services, and the founder Zhou Haibin is also the supervisor of the network of parents of the integration of Chinese mentally handicapped people. He cites a survey of Chinese companies that are reluctant to hire people with disabilities, with the biggest concerns about health risks, followed by "not being able to recruit competent employees" and "unmatched positions," as well as concerns about customer experience. 66% of businesses raised the need for external support on how to manage employees with disabilities.
Zhou Haibin introduced the journey of an elderly mentally handicapped person into society under the German model: receiving four years of special school education, two years of vocational preparatory classes, the next two years of 5 3-5 months of internship, and finally getting a job with social security. Since then, employment counselors have to provide follow-up counseling, but gradually reduced to weekly visits and telephone calls.
In 1998, Japan began to develop supportive employment and built three support networks: the government, non-governmental organizations, and enterprises. Zhou Haibin cited a survey of 3,300 people with mental disabilities who said that after supportive employment, the success rate of Japanese heart youth after being employed is 87.6%. Without an employment counselor, 90 percent of people with mental disabilities would fail in their first three months of employment.
However, Sun Menglin pointed out that there is currently no college or university in China that can send teachers from autistic groups who can immediately take up their posts, and teacher training mainly depends on institutions, and the cycle is too long to meet the needs of development. She hopes that the government will promote the construction of disciplines, support the training of teachers, and provide policy support for outstanding non-governmental institutions to run schools.
▌ What are the real obstacles?
At the Employment Salon, all the guests considered it to be a social concept as the biggest obstacle to solving the problem of youth employment. "How do we understand the value of life and where are the obstacles? If it is thought that the obstacle is in a person, the person is directly divided into three, six, nine, and so on. Li Hong said, "Disability is a state of diversity in our lives, everyone is equally valuable, why can't he go to school, get a job, live in the community?" Who is setting these barriers? This is our biggest challenge. ”
Xu Jiacheng, vice chairman of the China Association for the Rehabilitation of the Disabled, said that the United Nations Convention on the Rights of Persons with Disabilities emphasizes "reasonable accommodation" and that refusing to provide reasonable accommodation is discrimination. They deserve more opportunities in a normal society, which is a shift in perception. Under this transformation, "intellectual disability" is gradually called "intellectual and developmental disability", and the future intervention concept will move from a rehabilitation model to a support model.
"Reasonable accommodation" means the modification and adaptation necessary and appropriate, in accordance with specific needs and without undue or undue burden, in order to ensure that persons with disabilities enjoy or exercise all rights and fundamental freedoms on an equal basis with others. The Law of the People's Republic of China on the Protection of Persons with Disabilities also emphasizes that ordinary schools, public transportation systems, and public information systems should provide convenience for persons with disabilities.
According to the "China Autism Parent Needs Questionnaire", 65% of parents believe that their children will be discriminated against in school. According to the 2019 "Survey and Analysis of Residents' Understanding and Acceptance of Autism", 85.13% of the people in daily life do not understand what autism is, of which 8.38% of the population has not even heard of it. More than half of people also believe that the cause of the disease is a lack of family care.
When explaining the concept of integration, Rongyi Consulting said: We all have the experience of exclusion, there are invisible physical and mental injuries or obstacles, and we will slowly grow old. 43% of people over the age of 60 have some degree of disability. Autism spectrum disorder, the stars growing up, the family behind them, is not far away from each of us.
Zhou Haibin understands that everyone is afraid of things they don't understand first, and then they form other behavioral habits, especially fear of mental disorders, and always feel that they should be in an isolated environment. He believes that this requires constant public contact and constant seeing of people with disabilities before it changes slowly. "Every time I go to an event with a mentally handicapped person, I re-understand the world I see."
The title image is from the movie "Rain Man"