April 2nd is World Autism Day.
Autism, also known as autism, is a neurodevelopmental disorder characterized by impaired social interaction, narrow interests, and repetitive, stereotyped behaviors.
They are like stars twinkling alone, so they are called "children of the stars", but their situation is not as romantic as it is called: autism has no known cause, no cure, and can only be improved through intervention.
In recent years, my country has issued a series of policies for the rehabilitation and education of children with autism, which have solved the problems of many patients' families.
However, compared with younger patients, older autistic patients over 16 years old face a “fault” in social support – many of them are “captive” at home and cannot integrate into society.
"What will happen to the children when we are old?" The growing concern of becoming a "star child" parent.
"Captive" at home, socially distanced
Parents of patients: "Don't dare to get sick and don't dare to die"
When he saw Haohao, an 18-year-old autistic patient, he held his mobile phone to his ear and listened to the children's song "A group of ducks under the bridge in front of the door..." while walking back and forth in the room, listening to the stranger's visit. are not concerned.
Haohao's mother He Junlan runs a private rehabilitation institution for autistic children in Yinchuan, Ningxia. Haohao stays here during the day. "After my child graduated from the special education school last year, I have nowhere to go, so I can only take him with me to take care of."
Haohao's situation is a reflection of the current situation of many older autistic patients.
According to conservative estimates, at present, the number of autistic people in my country has exceeded 10 million, and the annual growth rate is nearly 200,000, ranking first among children with mental diseases.
In recent years, my country has introduced a series of policies for autistic children, including rescue rehabilitation and integrated education. However, after the compulsory education period, most of the older autistic patients over the age of 16 face the dilemma of having nowhere to go and nothing to do. , in the end can only return to the family.
Autism is a lifelong disease that requires long-term intervention and training. Once interrupted, the previous rehabilitation results are likely to be wasted.
"Especially after entering adolescence, children will have more serious emotional and behavioral problems. Being confined at home will make them degenerate and become more withdrawn." He Junlan said that she is currently training Haohao for basic life skills such as shopping and public transportation. , I don't dare to think about future employment and pensions, "I am also very confused."
Because autistic patients have social interaction barriers, cannot understand and abide by social rules, and have difficulty living independently, one of their parents needs to give up their job to take care of full-time care, and many families are broken up and disintegrated. .
As parents get older, how to properly accommodate their children is the most pressing problem facing them.
According to a survey recently released by the China Association of Mental Disability and Relatives and Friends to parents with autism across the country, more than 85% of parents expressed "no confidence" in the placement of their children after they lost their ability to take care of themselves, and less than 2% of parents were The placement of the child "has been planned", and more than half "have not yet considered".
"I definitely won't survive the child, so I can only save more money. At least he won't live on the streets when I close my eyes," said Zhang Beili, the father of an 18-year-old autistic patient.
He and his wife divorced at an early age. His parents are old and suffer from various chronic diseases. He works in a mine and returns home once a month. Watching cartoons in the dormitory, "Now I don't dare to get sick or die, I can only watch one step at a time."
The social support fault of older "star children"
As a life-long disorder, the characteristics of autism determine that this group needs "whole career support", including early screening, preschool rehabilitation, inclusive education, sheltered employment, and managed pensions.
However, older autistic patients lack social support in terms of employment and life placement, especially the lack of specialized rehabilitation education institutions and social integration places.
Currently, most rehabilitation facilities only accept people with autism between the ages of 0 and 14.
"Older patients do not have programs, and parents can't afford the high costs, so it is difficult for institutions to provide services." He Junlan said.
Taking Ningxia as an example, according to national policy, disabled children aged 0 to 6, including autistic children, can enjoy rehabilitation programs of 20,000 yuan per person per year. A subsidy of 2,000 yuan per year for rehabilitation services.
However, older autistic patients are classified as a category of mentally disabled persons, and the policies they enjoy are limited to living allowances and welfare benefits.
The services of general nursing institutions are not very professional, and it is difficult to meet the individual needs of autistic patients.
In recent years, my country has strengthened the care services for persons with intellectual, mental and severe physical disabilities of the working age group over the age of 16, and the number of care institutions in various places has increased significantly.
For example, there are currently more than 25 public and private care institutions in Ningxia, which provided various types of care services for more than 7,000 disabled people last year. Low-income households can also provide free care throughout the year in public institutions.
However, the reporter learned from interviews that many parents of autistic patients are not willing to put their children in nursing institutions.
On the one hand, many nursing institutions for the disabled have been transformed from pension institutions, and the employees are ordinary nurses, who can only provide basic living care, but cannot provide professional care for autistic patients.
Zhang Beili once sent his son to a private foster care institution to live with children with intellectual disabilities. However, because his son cried out in the middle of the night, he couldn't sleep, threw shoes at others, and his face was covered in blood. The management of the institution repeatedly asked He reflected that his son was "not easy to manage".
"He has no concept of time, eats slowly, and the management may not be able to take care of him. When I come back to pick him up every month, I always find that he has lost weight, and in the end I don't have the heart to give it away." Zhang Beili said.
In addition, some foster care institutions actively carry out labor skills training and auxiliary employment, but they are mainly applicable to physical disabilities and some intellectual disabilities.
Wei Hua, director of the Nursing and Rehabilitation Service Center for Disabled Persons in Xixia District, Yinchuan City, said that they have contacted many companies, hoping to provide simple jobs for people with mental disabilities, including autism, "but companies must also make profits. If there is a problem with the mind, it is impossible to directly say it.”
"Children are still so young, if they are only fed and 'in captivity', they will be useless. Our expectation for them is not only to live, but to enjoy a dignified and quality life." He Junlan said.
Call for a "whole career" support system
Recently, the China Association of Mental Disability and Relatives and Friends (referred to as "China Association for Spiritual Disability") released the theme of the 15th World Autism Day: "Focus on Autism Services: Building a Social Security Mechanism and Promoting the High-Quality Development of Service Organizations". It reflects that the current autism service is still unbalanced and insufficient, and it also points out the direction for future work.
The questionnaire survey conducted by the China Jingxing Association shows that among the services that parents expect most from service agencies for older autistic patients, "employment skills training" and "auxiliary employment support" are the two most popular.
At present, some private institutions in developed cities, such as Beijing Stars and Rain, Guangzhou Huiling, etc., are learning from mature foreign experience and exploring the establishment of a service model integrating "training-employment-maintenance", including the construction of pre-employment training bases, shelter factories, and maintenance places, etc. , arrange different types of work according to the stereotyped behavior characteristics of autistic patients, so that they can support themselves in a relatively stable environment and live with dignity until the end of their lives.
But there are still very few such social organizations, especially in the central and western regions, and they need to be nurtured and supported by relevant departments.
"The venue is the biggest problem. We don't even know which department to ask for approval, and we have no clue." Tian Xiangqian, director of the Ningxia Yinchuan Zhongxin Intellectual Disabled Parents Organization, said that several parents wanted to spontaneously set up an elderly autism care agency. Exploring the collective community, but suffering from no way out, "it is difficult to rely entirely on the social resources of parents, and I hope relevant departments will provide venue support."
Ding Fang, director of the Education and Employment Department of the Ningxia Disabled Persons' Federation, believes that while vigorously cultivating social organizations, the overall service capabilities of existing nursing institutions should be improved, and refined services should be provided on the basis of finding out the real needs of different types of disabled people.
For example, take the initiative to enter the enterprise to publicize the preferential policies for the employment of disabled persons on a proportional basis; provide targeted training for capable autistic patients; assign employment counselors to enterprises; guide enterprises to set up auxiliary services in nursing institutions or community day care centers employment factories, etc.
In addition, many parents have already begun to consider "death matters" and settle the rest of their children's lives through property trusts.
"Is the trust company's qualifications reliable? Are the funds safe? Who will supervise? Does the money really meet the needs of children? These are all questions that we worry about." He Junlan hopes that the relevant departments can improve the trust for special groups such as autism as soon as possible The service system will jointly illuminate the future of older "star children".
(The names of autistic patients and their parents are pseudonyms in the text)
Source: "Ban Yue Tan Internal Edition"
Ban Yue Tan Reporter: Ma Lijuan and Leng Ruijie