• Kyodo

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One of the biggest fears held by parents of children with disabilities is how to make sure their children are cared for after they are gone.

With both parents and children in mind, a network of advisory services to help families plan for the future has been spreading in Japan.

Junko Kobayashi, 50, was among the parents who met with financial planner Kaneko Sato, 57, in a lounge at her condominium in Yokohama in late July.

Kobayashi, who was diagnosed with breast cancer about four years ago, sought advice on how to alleviate concerns she has about her 19-year-old son, Jo, who cannot speak due to a severe mental disability.

“I was at a total loss as to how to deal with this situation. I can now see a ray of hope,” Kobayashi said after meeting with Sato, who explained the details of the disability pension system that Jo becomes eligible for at age 20 and ways to save money for his future.

While Kobayashi was hospitalized, expenses mounted as the family had to hastily hire care workers for Jo and arrange to have him brought to and from school.

“I had always thought something might happen to my child but never considered myself,” said Kobayashi. “I had thought of myself as being invincible.”

After returning home, Kobayashi continued her medication but feared what might happen if her husband also became ill. Wondering where to seek advice, she came across Sato’s activities on Facebook.

The network originated from an advisory office established in 2014 by Shin Watanabe, a certified notary public in Tokyo who has a daughter with a mental disability.

Recognizing that welfare services are often fragmented and inconvenient for people in need, Watanabe, 58, opened the office to ascertain their concerns free of charge, or for a small fee, and introduce them to other support agencies.

The program has attracted many followers and developed into a nationwide network of more than 50 offices. In June, it held a seminar to share the activities being undertaken around the country.

State-level programs, meanwhile, have yet to get up to speed. The Diet adopted a supplementary resolution to the 2012 law for comprehensive support for people with disabilities, calling for community-based support of disabled children after the death of their parents.

But as of April 2018, only about 230 of some 1,700 municipalities had centers for such assistance, despite the central government’s call to establish them.

“The (worst case) to avoid is a situation where parents and children grow old and both become incapacitated,” Sato said.

Parents “should not take on this burden but feel free to seek advice from us,” she added.

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