For 12 directors of autism programs throughout China, a weeklong exchange to Heartspring is a chance to learn more about opportunities to improve the lives of those with autism.
“I really want to see with my own eyes how we should treat children with autism correctly and help the parents understand that they should respect the special needs of their children,” Zhang LingLi, one of the program directors visiting Wichita, said through a translator Wednesday.
“The information I get from here, I will take this back home and try to do advocacy and influence the local authority so they can know what is the responsibility of the government to people with disabilities.”
Zhang’s program is part of the Heart Alliance, which has grown to more than 160 autism programs throughout China since 2005.
The alliance was started by Tian Huiping, who founded the Beijing Stars and Rain Education Institute for Autism in 1993, the first non-governmental education organization for children with autism in China. It now serves more than 9,000 children with autism.
Stars and Rain is a sister school of Heartspring in Wichita. Heartspring mostly works with children who have severe autism and other mental disabilities at its 37-acre facility at 8700 E.29th St. North.
Most of its about 50 students live on the campus and come to Heartspring from around the country. But part of its mission is global advocacy and training.
Heartspring was founded in 1934 and in its early decades founder Martin Palmer’s program was visited by people from all over the world, said Gary Singleton, Heartspring president and CEO.
“Over the years, we’ve changed a lot in terms of campus and name, but we lost a piece of that extension in terms of international mission,” Singleton said.
“So our goal in doing this is really to extend our mission beyond what we do here in Kansas and beyond what we do across the country, but to extend it and reach out and provide training for children in other countries.”
Although Heartspring has worked with programs in other countries – including India, Uganda and Bangladesh – its longest-standing partnership is with Stars and Rain.
Through an exchange, Tian and others from Stars and Rain have visited Heartspring nearly every year since 2005, and Heartspring employees have gone to China to visit nearly every year since 2008. This is the second year a group from the alliance has visited Heartspring.
For many in the group, the trip is their first abroad.
During the exchange, the group will learn about Heartspring’s practices and also will visit several organizations that provide services for those with special needs, including the Kansas Elks Training Center for the Handicapped (KETCH), Chisholm Life Skills Center, the Wichita school district’s Levy Special Education Center and Goodwill Industries.
Autism awareness has grown significantly in the U.S., and awareness is starting to increase in developing countries.
An estimated 1 in 88 children in the U.S. are thought to have autism or a related disorder, according to the Centers for Disease Control and Prevention.
There are an estimated 155 million children with disabilities in developing countries, Singleton said, but only 2 percent have ever received any services.
“Many developing countries now are beginning to look at the needs of children with special needs and challenges, and typically those start with a mom or dad, more often a mom, that has a child with autism and there’s no resources within their home country,” Singleton said.
The Chinese government just officially recognized autism as a disability in the last year, Tian said, but has no official estimates of the number of children and adults with the disorder.
“The most important thing for a country or a society is how we accept people, children,” Tian said. “They are different from others, but they are equal.”
In China, insurance will not cover therapies for the disabled, and the cost of sending a child to a special school can be a tremendous financial burden on families, Singleton said.
Traditionally, if a child has autism, the parents are extremely afraid of their financial future and often a parent will have to quit their job to care for the child. What made the situation even more difficult was that for a long time, the common misconception in China has been that autism can be cured, Tian said.
“We tell (parents) the truth that autism is a lifelong disorder and so the most important thing is not that we try to make every effort to cure them or to make him ‘normal,’ we should learn how to lead them together and to give them a better environment,” Tian said.
Families in China traditionally have personally cared for disabled family members, so the idea of social care is new. But things are slowly changing.
Families are getting smaller, and more and more local governments in China are beginning to help subsidize those costs for families. Stars and Rain received its first subsidy from the Chinese government last month.
Most of the program directors visiting Heartspring for the next week started their own schools for students with autism after finding out their own children were autistic.
Tian has a 27-year-old autistic son and she said the 2010 movie “Ocean Heaven” starring Jet Li, about a terminally ill father teaching his autistic son to be self-sufficient, was inspired by Tian’s story.
“(Parents like Tian) learn there are things that can be done to help these children and they begin the first programs in their countries, and that’s who we tend to work with, those sort of pioneers that are just starting those programs,” Singleton said.
“When they come here and see Heartspring and go to our other community resources here, what they leave with is a vision or a dream of what their countries can look like.”