Announcement Event for 2025 Japan Foundation Grant Project 'Parent-less After Notebook' Survey Results Held

The Digital Afterlife Promotion Council (DEA, Chairman: Shun Shibata) held a hybrid event (venue + online) on Friday, March 14, 2025, titled 'Announcement Event for 2025 Japan Foundation Grant Project "Parent-less After Notebook" Survey Results.' This event was implemented as a grant project by The Nippon Foundation, and was attended by over 100 people, including families of disabled children, supporters, welfare professionals, and medical professionals. On the day of the event, the results of the 'Nationwide Survey on "Parent-less After Notebook"' conducted among nationwide stakeholders, families, and support organizations were announced. Furthermore, from the questions raised in the survey, experts and families active on the front lines were invited to discuss future support strategies from multiple perspectives, reaffirming the structural challenges of the 'parent-less after' issue and the need for digital inheritance of support information. ■ Event Overview Date and Time: Friday, March 14, 2025, 10:00 AM - 11:30 AM Format: Hybrid (Tokyo venue + online participation) Organizer: Digital Afterlife Promotion Council (DEA) Target Audience: Families of disabled children, supporters, welfare/medical professionals, etc. Content: Announcement of nationwide survey results for 'Parent-less After Notebook,' lectures and Q&A by experts. Speakers: Mr. Shin Watanabe (Administrative Scrivener/Social Insurance Labor Consultant, Head of 'Parent-less After' Consultation Room, Chairman of Setagaya-ku Parents Association for the Disabled) / Ms. Nao Fujii (Representative Director, General Incorporated Association Parent-less After Consultation Room Kansai Network; Director, General Incorporated Foundation Temple and Church Parent-less After Consultation Room; Education Committee Member, Yao City Board of Education) The participant survey conducted after the event (40 valid responses) received feedback such as 'It was a good opportunity to review previous knowledge,' 'I was able to deepen my understanding of preparation,' and 'I gained new knowledge.' Additionally, 97.5% of respondents expressed a desire to participate in future events and study sessions on the 'parent-less after' theme, indicating a high demand for this topic. ■ Overview of Nationwide Survey Survey Name: 'Nationwide Survey for Supporting the Future of Disabled Individuals "Parent-less After"' ~Survey on "Parent-less After Notebook"~ Survey Period: August - December 2025 (Tabulation: December 2025 - January 2026) Valid Responses: Families n=237, Support Organizations n=163 Target Survey: Nationwide families of disabled individuals, support organizations (e.g., parents' groups), municipalities Survey Method: Internet and paper surveys ■ Key Survey Results ① Serious Discrepancy Between Anxiety and Preparation Status Despite 85.5% of families feeling strong anxiety about 'parent-less after,' only 57.0% have started concrete preparations. The content of these preparations is biased towards financial aspects such as 'savings and insurance,' with only about 10% recording information about the individual's wishes and daily support. Hesitation such as 'don't know what to write' (26%) and 'don't know how to write' (20%) are the biggest barriers. ② 'Black Box' Nature of Support Information Many life-sustaining support information, such as medication, coping with personal preferences/panic, and personal care methods, are accumulated only in the parents' memories and are not systematized. The cessation of information inheritance due to the parents' absence poses a significant risk that could collapse the daily lives of individuals, even more so than financial loss. Support organizations also frequently receive 'parent-less after' consultations ('sometimes' 47%, 'often' 12%), but the current situation is that they can only respond passively due to a lack of human and financial resources. ③ High Expectations for Digitalization and Security Concerns Regarding the digitalization of paper-based 'Parent-less After Notebooks,' over 75% of families evaluated it as 'effective.' The response 'interested' in apps as preparation for the future was 86%. The most desired functions were 'information sharing with relatives/supporters' (23%), 'ease of organizing/sharing information' (23%), and 'ease of updating/storing' (20%). On the other hand, concerns such as 'security concerns' (16%), 'risk of data loss' (15%), and 'personal information protection' (14%) also persist, making the provider's high trustworthiness and robust security system crucial for adoption. ④ The Key to App Adoption is a 'Continuous Support System' As necessary support measures to promote app usage, families requested 'establishment of a continuous support system for users' (28%), 'collaboration with municipalities/facilities' (24%), and 'information management advice from experts' (24%). Training sessions on how to use digital devices for parents who are anxious about operating them, and sustained support in partnership with public and private sectors, are indispensable. The survey results will be published on the council's website (https://digital-ending.or.jp/) and other platforms from April onwards. ■ Speaker Comments (from Q&A) Mr. Shin Watanabe (Administrative Scrivener/Social Insurance Labor Consultant, Head of 'Parent-less After' Consultation Room): 'Connecting with local supporters and building a team to support the individual is most important. For over 10 years, I have spoken about the importance of the "parent-less after" notebook, but many voices express reluctance to write it down or find updating it when circumstances change troublesome. I hope that by transitioning to an app, these inconveniences will be resolved and it will encourage the decision to entrust things to the community from an early stage.' Ms. Nao Fujii (Representative Director, General Incorporated Association Parent-less After Consultation Room Kansai Network): 'As a mother raising a disabled daughter and as a professional, I keenly feel the importance of preparing for the "parent-less after." Writing a notebook alone is a daunting task, but if you gather with peers who share the same concerns, encourage each other with laughter, and update it little by little, it will be fine. Even if no preparations are made, as long as there are connections with people, others will help. Let's start with what we can do, within a reasonable range.' ■ Future Developments The Council, in collaboration with The Nippon Foundation (Project for Support for Disabled Individuals' 'Parent-less After'), is promoting the development and institutionalization of a digital version of the 'Support Handover Chart (tentative name).' We aim to establish a system for ICT to transfer daily support and therapeutic information accumulated by parents over many years to the next supporters (next generation), with the ultimate goal of public infrastructure. ■ 2026 Activities ① Requirements Definition & Development for 'Support Handover Chart' The 2025 survey showed that 89% of families are interested in digitizing the 'Parent-less After Notebook,' and 86% responded that it is effective. Supporters also recognized its effectiveness at 76%, with both families and supporters commonly evaluating the benefits of information organization and improved collaboration through digital tools. Based on these survey results, we will organize the necessary functions from each perspective and proceed with defining the requirements for constructing the platform (tentative name: Support Handover Chart). Furthermore, we will establish working groups (WGs) composed of individuals with disabilities, families, supporters, and experts such as administrative scriveners to consolidate opinions. We will also engage in activities leading to policy recommendations and support requests by holding research groups that invite government and national participation. ② Construction of 'Parent-less After' Chatbot We will develop an AI chatbot as a consultation service to address the specific anxieties ('continuation of medical/welfare support,' 'exercise of rights,' 'life planning,' etc.) of disabled individuals and their families, who tend to be isolated, by integrating the knowledge of experts, families, and facilities. We aim to achieve 24-hour, anonymous, low-burden information access and build a supportive system that stays close to families, aiming for the following three effects: (1) For families, it will function as a 24-hour, anonymous consultation service, promoting early preparation and reducing anxiety. (2) For municipal counselors and facility support staff, it can be used as an 'information database (Q&A),' leading to standardization of support and reduction of explanation burden. (3) Accumulated Q&A and search behavior will be linked to system improvement, model creation, and educational material development. We will steadily advance the implementation of AI utilization in the welfare domain, applying and expanding it to other welfare themes with 'parent-less after' as a先行 model. ■ This project is adopted and implemented as a 2025 Japan Foundation Grant Project. ■ Inquiries Regarding This Matter Digital Afterlife Promotion Council (DEA) WEB: https://dea.or.jp Mail: info@digital-ending.or.jp (Contact: Kato)