Communal living model provides care for autistic adults after parents grow old

Communal living model provides care for autistic adults after parents grow old

2024-03-31

About 19,000 people in Taiwan have been diagnosed with autism, a developmental disability that is not widely understood by the general public. People with moderate to severe symptoms are sometimes fully dependent on others for care, be it by institutions or their families. For parents with autistic children, a major worry is their children’s well-being after their own death. In Northern Taiwan, a group of parents has come together to find a communal living solution that’s based in a social housing unit. They hope the arrangement will allow their children to become a part of society and to live happy, fulfilling lives. Our Sunday special report.

Cheng Chiao starts off the day brushing his teeth and combing his hair. But, unlike most people his age, his father has to check that the teeth are clean.

Cheng is 42 years old and 183 centimeters tall. He is autistic, and over the past 10 years, his father has been his main caregiver.

In Taiwan, about 19,000 people have been diagnosed with autism, a condition that is not well understood by the general public. The education system provides care for autistic people until they turn 18. After that age, 90% end up living at home, where someone must take care of them round the clock.

Chien Chih-chen is also autistic.

Chien loves going on bike rides. His mother, Lin Chuan-yu, often goes out with him to exercise.

Autism is a developmental disability that can lead to a spectrum of symptoms. For example, Cheng is minimally verbal, whereas Chien can communicate with words. Chien also has Tourette syndrome, which causes him to make sudden movements he can’t control. Because of this, Chien’s mother is always close at hand.

These autistic men get all the care they need from their parents. But their parents won’t be there forever.

Cheng’s father is already in his 70s and his health has begun to deteriorate.

Cheng Wen-cheng
Cheng Chiao’s father
A few weeks ago we were doing CPR training. Perhaps I overexerted myself, because two minutes into it, I felt short on oxygen. Also, doctors have found a small tumor in my lungs.

For many parents with autistic children, a major concern is what will happen to their children when they’re gone.

Tsang Cheng-che is also autistic. He communicates by typing out messages.

Tsang Hao-wei
Tsang Cheng-che’s father
He wrote, “Good morning and thank you for your hard work. We are hard to capture on camera.”

Tsung Ching-yi
Educator
He doesn’t speak, but he has very clear ideas in his mind. When there is something he wants to let out, he communicates by typing on the keyboard.

Tsang Hao-wei
Tsang Cheng-che’s father
He might look like a young child, but inside he is an old soul. The words he uses are very sophisticated. His vocabulary is very rich.

Cheng also expresses his inner thoughts through typing.

Cheng Wen-cheng
Cheng Chiao’s father
He has a sorrow inside. From what he’s written in the past, he does know he is autistic. All of our children are self-aware, they are aware that they have autism. Perhaps part of this sorrow is a kind of worry. They might be afraid that they’ll be sent to a care home after we are gone.

Currently, most autistic adults who lose their parents are sent to institutional care. Though autistic people often have trouble expressing themselves, their writing provides a peek into their minds.

Tsang Hao-wei
Tsang Cheng-che’s father
He wrote an essay thanking me, his father. In it, he said he wished he could just be held in my arms and that we would lie down together forever, the way we did when he was 2 years old. He said he wished he could spend his whole life like that. I think… it’s something that really brings tears to my eyes. We work really hard in hopes of creating an environment where they can live their life happily. That’s our goal in life. It’s all for them.

In 2017, Cheng’s father founded an association with parents of other children with autism. Their goal is to create a safe space where their adult children can live. Toward the end of 2019, the association secured several social housing units in New Taipei’s Linkou District. That’s how a new communal living model came to be.

The parents in the association decided to become neighbors in order to care for each other’s children. They hope this communal arrangement will allow parents and their autistic children to grow old together.

Yang Chen-tsai
Autism rights association
I’d like to thank the government for giving us this space, for making everything more convenient for us.

Back in 2006, the United Nations adopted the Convention on the Rights of Persons with Disabilities. One of its core principles is that disabled people are full and equal members of society.

Lin Chuan-yu
Chien Chih-chen’s mother
The CRPD stressed that they are people too, and they should enjoy the same rights as everyone else. We are part of society, so they should be part of society as well. We work during the day and go home at night. They should be able to do that too, and not just spend the entire day living inside an institution.

Since the association acquired the social housing units in 2019, the number of households in the project has increased from five to 18. The association has also received subsidies from the Ministry of Health and Welfare and New Taipei’s Social Welfare Department to hire social workers and educators for a day school of its own. It’s also set up a coffee workshop that provides employment opportunities.

The coffee workshop is located in the social housing rental itself. Here, Tsang, Cheng and Chu Po-ying are assembling drip bag coffee packs with the help of parents and educators.

Lying on the floor to one side, Chien is feeling distressed. After his mother comforts him, he gets back up and is ready to work.

People with autism often have a hard time regulating their emotions. This makes it difficult for them to find jobs even at sheltered workshops, which tend to be more understanding toward special needs.

Lin Chuan-yu
Chien Chih-chen’s mother
People with autism are actually very capable of doing things. The problem is that they can’t find jobs outside. It’s not easy for them to ever get a sense of accomplishment from work. So, we provide them with these kinds of atypical employment opportunities. The work isn’t as time-sensitive as in other jobs, so they can just come here and work whenever they feel good both physically and mentally.

Compared with neurotypical people, it’s much harder for people with autism to achieve self-actualization. But the flexible employment provided by the association has given Chu a sense of accomplishment.

Chu Po-ying
Adult with autism
Enjoying a delicious meal can bring all the pains of life to a delightful end. With NT$200 I can make my body, mind and soul the happiest they can be.

During the day, they can attend classes and go to work. But after their parents pass away, who will take care of them at night?

Chiang Hsien-hung has brought his son Chiang Chiao-lung from Taipei to Linkou, to get him used to living here.

Up to six people with autism can live in this space. At night, a carer looks after them.

Chiang Hsien-hung
Chiang Chiao-lung’s father
He needs to be reminded about everything all the time. As far as life skills go, he can take the bus. He can remember bus routes and he knows how to get around.

The association’s rentals in Linkou are a second home that can eventually become their main living quarters.

Lin Chuan-yu
Chien Chih-chen’s mother
Right now what we have to do is to gradually get them used to living alone at night, and develop the corresponding skills. It can be gradual, perhaps starting with one or two nights a week. They can be with their parents in the beginning.

The autistic adults gradually learn the skills they need to live well, even without their parents. While other older adults spend their days playing with their grandkids, the parents of autistic adults spend their time ensuring that their children can survive without them.

Chiang Hsien-hung
Chiang Chiao-lung’s father
Our ultimate goal is that, after we are gone, our children can live here, in a familiar environment with familiar people. We hope they won’t become orphans wandering the streets after their parents pass away.

Cheng Wen-cheng
Cheng Chiao’s father
Everything I do, I do for him. We will all die in our 70s or 80s, or even in our 90s. But we have to take responsibility for what will happen 20 to 30 years after that. That’s 20 or 30 years during which we’re no longer in this world, but our children are. So we have to be responsible for that time too.

The association has also rented out a plot of farmland in Linkou so that members can relax on weekends and holidays. Today, parents and children make lunch, set up trellises from discarded scaffolding, and plant vegetables.

Lin Chuan-yu
Chien Chih-chen’s mother
Being in nature is also a form of care. The founder of our association, Cheng Wen-cheng, once took his son to a small farm in Hualien. He found that his son’s mood was much more stable. So we decided to provide that kind of experience here as well.

Four years after moving into social housing, the association provides for adults with autism thanks to donations from parents, fundraisers and government help. With love and dedication, parents have found ways to keep their autistic children in good hands in their absence. They hope that more families around Taiwan can take inspiration from their model, and come up with solutions so that nobody is left behind.

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