There are still 4 days left for our special holiday, World Autism Awareness Day. It's been exactly 40 years since 1982, when Chinese mainland publicly reported its first case of autism.
In the past 40 years, the diagnosis of autism has gone from coarse to fine, the intervention technology has been from scratch, and the social cognition has changed from misunderstanding and exclusion to more and more understanding and acceptance, behind which is the hard work and dedication of countless pathfinders.
We launched the series "Exploring the Integration and Happiness of Autistic People in China" series of reports, which empowers the future of more than 10 million families with the exploration and joy of the past 40 years. This is the first one.
01
Pathfinder in the field of autism
Liao Yanhui is a pathfinder among autistic parents. As early as 2001, she and other parents established the Shenzhen Autism Parent Resource Center, which was the first autism parent organization in Shenzhen, and later registered as the Shenzhen Autism Research Association.
Over the past 21 years, while caring for her autistic son Kevin, she has devoted herself to the protection of the rights and interests of people with mental disabilities, and has successively founded rehabilitation centers, social work centers, and the Family Care Association for People with Mental Disabilities.
The generation of parents she represents, in the life course of children's growth, has successively proposed issues such as child rehabilitation, integrated education, employment support, etc., from individual needs to public issues, from family self-help, mutual assistance, to the introduction of influencing policies, and has seen a little progress in autism-related diagnosis and rehabilitation, social cognition and tolerance.
However, Kevin is 27 years old, and many of the advances she has promoted have passed the applicable age, and the adult Kevin still faces a situation where there are no services to go.
And Liao Yanhui also began to consider that one day she left, what to do with Kevin, he wanted to go cycling, to eat hot pot, to go to the hot spring, who can help him arrange? How does Kevin with emotional problems get along with his neighbors, how to create neighborhood relationships, and if there are neighbors complaining or even injuring Kevin, who will help him deal with it?
After years of exploration, Liao Yanhui has discussed a solution framework with other public welfare partners in response to Kevin's future plans, just as she did many years ago, she hopes to turn the case into a public issue and a future that can be shared by more than 10 million autistic families across the country.
During the two sessions in 2022, Yu Minhong, a member of the National Committee of the Chinese People's Political Consultative Conference, submitted the "Proposal on Establishing a Support Policy for the Families of the Disabled", which also included the exploration of the organization founded by Liao Yanhui, and the China Research Association for the Development of the Cause of the Disabled also responded quickly, which is a good start.
02
Kevin, 27
Enter middle-aged and elderly life in advance
Rice and Millet: How is Kevin? Has the pandemic affected him?
Liao Yanhui: The typical symptoms of autism have been maintained, and what has improved is IQ, and what has regressed is emotional intelligence.
When I grow up, I know more things and want to express more, but understanding is higher than expression, emotions are easy to be bad, I always think that you people are so stupid, you can't understand me, and then it's easy to get angry.
Recently, at home, the epidemic, many institutions are closed, even when it is open, Kevin has no service agencies to go to, because he is 27 years old, adult, almost into middle age.
At such an age, there is no job, and it is not like when he was a child, the goal is to recover, but to take life as the goal, at this time, the strength of social support has a great impact on his life.
Because I can't go out, I live at home all day, and my dependence on my parents, mainly emotional dependence, is more powerful than when I was a child. Every day looking for someone to play or find trouble, only mom and dad are left, and they enter our middle-aged and elderly lives in advance.
For example, listening to songs, his sister listening to Xiao Zhan, Jay Chou, he, like us, Tan Yonglin, Zhang Guorong, Teresa Teng, especially like Teresa Teng, "Sweet Honey", "Wine and Coffee", "I Only Care About You" and so on.
On the social side, it's clear that there's no self, tied up with us. We are affected by his emotions, he is in a good mood, we are good during that time, he is not in a good mood, we are also not good; at the same time, he is also affected by us, he used to be young, often took him out to play, now he is older, he is also afraid of the epidemic, many times at home, his circle of life has shrunk.
Rice and millet: under what circumstances might mood not be good?
Liao Yanhui: For example, yesterday, he had been swinging the shoes of the shoe cabinet at the door, and if he didn't swing them flat, he was very angry and began to hit his head and hit his head. When there is no epidemic, go out to eat a hot pot, visit the park, there is a place to divert attention, and now stay in this more than 100 square meters every day, that is, the living room tour, kitchen tour, balcony tour, etc., will pay special attention to these details, whether the clothes are folded, the quilt sheets are not folded, the shoes are not laid out, the stereotyped behavior will be magnified, and it is easy to appear this kind of self-injurious behavior.
Rice and millet: Did you hit your head badly?
Liao Yanhui: Bleeding.
Rice and Millet: So what do you do? Can you only control him first?
Liao Yanhui: I can't control him, he is so big, every one of us must look up to him. We could only find a way to take him to our room and do space evacuation. Not control, but channeling.
Rice and Millet: He's still willing to leave, right?
Liao Yanhui: Of course, he hopes that he can balance it, but if he really can't balance it, he will give up, which requires someone to help him get out and stop getting tangled in it.
03
Faced by adults with autism
The core problem is service interruption
Rice and Xiaomi: Have you ever thought about the possibility of Kevin going to work?
Liao Yanhui: The first key point of this question is whether he is willing to work. Some people enjoy being a "young master", and there is no willingness to work, this is not unique to the disabled, this year there is a survey that does not say that more than 20 million college graduates are slow employment, do not like the work will not be done, the disabled are not necessarily willing to work. So, my first concern is whether he is willing to work, then whether he is employable, and then whether he has employment support.
Rice and Millet: Does he have it?
Liao Yanhui: Kevin is more suitable for sheltered employment in terms of ability, but sheltered employment is usually labor-intensive and repetitive, which is not in line with his wishes. His needs are very individualized, he does not like to repeat and mechanically do it all day long, and he is very demanding of himself, as he just said that folding clothes is not standard, and he will be angry. So his abilities and needs are mismatched.
He is different from Sensen (Lu Ying's son), Sensen will want to say that he is going to live in a five-star hotel, he wants to travel, his mother said you have to go to a five-star hotel, you can make a plan this year, you must earn how much money, so he has motivation.
But Kevin's needs are not sorted like this, the first two years I let him give the next 10 years of life to make a plan, he is weak in language expression, through the picture to choose, born in 1995 to the present, from small to large photos have been in chronological order to make choices, in money, relatives, friends, drugs, food and other photos, he only chose one to put in the next 10 years, is a family of four together. So, in his mind, emotional intimacy is the main need.
Rice and millet: In the past two years, many people have been discussing special needs trusts to prepare for the future care of autistic children, how do you consider this level?
Liao Yanhui: The special needs trust mainly solves the problem of money, but the problem I am currently more concerned about is not this.
Rice and millet: what is that?
Liao Yanhui: There is no service. As a community organization, we want to pay attention to the public service needs of 80 to 90% of the people, and when basic public services are available, there are services that can be purchased with money.
Adults like Kevin are basically service cut off and welfare cliffs. At that time, children's rehabilitation services were also lacking, but in recent years, with the entry of capital, there have been many institutions. But in other fields, without capital, they can only rely on public services.
From the perspective of the five dimensions of availability, accessibility, adaptability, affordability and acceptability, they are all lacking.
Accessibility is whether there is no service; accessibility is whether it is near; it is appropriate, whether it can meet the needs of individualization; whether it is affordable or cheap, if it costs 20,000 or 30,000 service fees a month, it may be unbearable; and finally acceptable, whether your service makes the recipient dignified. For example, like Kevin, who is not a person with a very special ability point, and has high requirements for dignity, he goes to a painting class, the teacher puts all the children on one side, he is alone on the other side, he will be angry, he feels that there is an obvious discrimination, he feels that others there are not likes him.
These 5 are progressive, starting with availability, and now most of the questions are focused on availability, how many institutions do you think are providing services for adults or adolescents with autism?
04
Already for Kevin's future life
A framework was created
Rice and Millet: So what are your plans for Kevin's future?
Liao Yanhui: In response to Kevin's wishes, we have initially created a framework with the Autism Research Association, the Watch Society, and Hui Ling (a service agency for the mentally handicapped), which will be a framework for decentralization and mutual checks and balances. Let's not talk about the problem of money, assuming that the money is solved, how to solve the back-end service.
First of all, there will be an independent case manager to help him, and now the case manager is me, from small to large to help him distribute money in different institutions, arrange services, then I am gone, I need a more professional role to replace my part of the function. The premise is that he must understand the child, understand his wishes and needs.
Kevin on a bicycle
For example, Kevin said that I want to ride a car once a week, eat hot pot once, eat Hunan cuisine once, it may be so simple, it may be more abundant, such as going to the hot spring once a month, where to play, and so on. Existing commercial organizations can't provide these services directly to him, and need someone to help him connect and individualize the design services, which is the case manager, who is the hub of the service provider.
The other line is the hub of service supervision, which requires an association to sign an agreement with me to regularly understand my children's wishes and needs. This oversight includes oversight of service hubs, oversight of service providers, and enforcement of rights in the event of a situation.
There will also be a legal guardian, most likely a sister, like the part of the asset, such as buying and selling a house, or handing it over to the legal guardian.
I will pay attention to how to entrust money, entrust people, entrust power, entrust information, and pass on what I have known about him in 27 years. I hope to break up the guardian's rights through the principal-agent agreement, and this part of the rights will not be given to a person or an organization or a committee separately in the future, but hopefully a process of separation of powers and checks and balances. When the agreement was signed, our whole family went, and Dad, Mom, sister, and Kevin were all present.
Therefore, the guardian will have three assessment reports in his hand on a regular basis, undertaking different functions, Hui Ling does more of the overall plan, individualization of willingness and needs assessment, autism research will be a service hub, the most familiar with the industry situation of adult mental disorders services, the Watch Association to do service supervision and rights protection, Kevin if infringed, immediately help him to protect his rights.
Of course, the few examples I'm giving now are the existing institutions that can provide this kind of service, and there may be many others in the future, and we at The Watch Society have helped incubate more than 120 parent organizations across the country.
Rice and Millet: When do you expect Kevin's frame to take shape?
Liao Yanhui: The target is when he is 30 years old. I was prepared in advance, not because I was dead and activated, but because I could see it working when I was there. Its incubation and replication do not need to wait for three years, now that the framework has been initially created, there are also cases that have begun to be done, in addition to us also have other families.
05
Family support also includes connecting neighborhoods
Rice and millet: Just now the main talk is service support, but also need the support of the social environment, such as Kevin in the past few years because of some emotional and behavioral problems and neighbors have some conflicts, in 2018, a community owner in Shenzhen pulled a banner to resist mentally handicapped families. What kind of support do you feel you need to integrate into the community?
Liao Yanhui: Family support includes support for barrier-free environments, including support for community building and neighborhood relations.
In Kevin's case, there was no social organization or social worker to provide such a service before, that is, by the family file.
Every year on Thanksgiving, I give gifts to all the neighbors in this building for 9 years. I made a booklet called "Kevin's World", introduced all aspects of Kevin, sent it to the industry committee, the management office, so that even if I was suddenly isolated because of the epidemic, there are many people who can quickly understand and help Kevin through the hand booklet, which belongs to family support.
We have been here for more than ten years and the neighborhood has always been quite good. There are individual owners, because they live upstairs and downstairs, the response is particularly large, and the acceptance is relatively weak. There is a term called "nimbyism", the closer you are, the lower the acceptance, but after all, it is an individual, not an entire community.
There were also times when Kevin was beaten by a neighbor, and we ended up in court, and then the community publicized the beater, and we both had some adjustments. Therefore, for the construction of the community environment, in addition to the gentle, such as giving Thanksgiving gifts, there are also relatively rigid rights protection, which is also a kind of community education.
I did all of this before, and in the future I can also be connected by the case manager.
06
How to transform from individual cases to public issues
Rice and millet: Is the cost of such a support system acceptable to most families?
Liao Yanhui: It depends on what you commission, it is very individualized, and there may be different packages. Kevin's packages are relatively rich, but parents have a choice. Like entrusting service supervision, which is basically the cost of social workers, the goal of non-profit organizations is not profitable, so the fee is more cost-oriented.
Still in the process of practice, we make a pilot template out, (basic services) can let the government to buy, for the government is a very small expenditure, but now do not know that there is such a demand, and how to do it is satisfactory to us.
My focus is not on the trust of the 10% of the rich, but more on the leverage that can unite all 90% of the people to push the government for policy.
We have been paying attention to this topic since 2016, cooperating with experts and scholars to do a lot of research reports and action research, and then doing some demonstration projects, after the template is typed out, it will be copied and incubated nationwide. By the two sessions of the National People's Congress this year, Member Yu Minhong had submitted the "Proposal on Establishing a Support Policy for the Families of Persons with Disabilities."
Background
Yu Minhong made three suggestions:
1. The China Disabled Persons' Federation will lead the special research to establish clear and clear policy objectives, and establish a family-centered family support policy system for the disabled.
2. Establish a new family allowance system for persons with disabilities, with families of persons with disabilities as beneficiaries, and provide tiered funding according to the actual needs of families with disabilities. It is recommended to give a monthly subsidy of 500-2000 yuan to the families of the disabled, and a monthly subsidy of 2360 yuan to the family caregivers of the disabled.
3. The government is to establish and improve the family support system for persons with disabilities as a whole, mobilize social forces to participate in fundraising and provide diversified and personalized family support services for persons with disabilities. Through pilots, family support services can be combined with community services to establish an officially operated resource centre for family support services for persons with disabilities.
Looking at Kevin as a case, turning it into a public issue, and then building a diversified support system is a future prospect that everyone can share.
Rice and millet: How long do you expect to do to promote policy leverage?
Liao Yanhui: This time at the national two sessions, the China Institute for the Development of the Disabled Will soon responded, and last week there was a second class, starting from the level of policy research. Of course, the advocacy of the policy is not achieved overnight, and there needs to be a slow process, but it will definitely get better and better overall.
At the same time, we also found some partners in several different streets in Shenzhen, and cooperated with the units that the government has purchased services to promote the practice of some specific services supported by families.
Rice and millet: Is there any real progress in cooperation with the streets?
Liao Yanhui: Yes, but it is not yet time to go public.
Wen | Wang Ji Lu Yuzu