People with intellectual/developmental disabilities (IDD) face severe challenges in navigating life. They have varying degrees of difficulty understanding and completing tasks, communicating with others, and making decisions. As a result, they rely on the support of others to help them through their daily lives.
Relying on the support of others is essential, but it also comes at a cost. In order to receive the full benefits of their support team, people with IDD must cede control over their personal information and decision-making to others. In doing so, they lose varying degrees of independence and self-determination. We refer to these inevitable consequences as "Otherism."
Otherism works to restrict the person’s life on two levels: First, the individual is forced to cede ownership of their personal information to others for support and care. Second, because people with IDD require complex assistance, they are largely viewed as being the “others” with “special” needs for care. Both levels result in adverse impacts on the individual’s ability to achieve their maximum level of independence and autonomy.
The Otherism conundrum has persisted as a seemingly insoluble problem. Until now.
AI and Blockchain Will Mitigate Otherism
AI and blockchain technologies can now break the hold of Otherism on the lives of people with IDD. These technologies will give people with IDD more control over their personal information and decision-making.
AI will be used to:
Help people with IDD organize their records and uncover insights, such as patterns in their behavior or preferences.
Provide notifications about important events or appointments, such as doctor's appointments or medication reminders.
Help people with IDD communicate with others more effectively, such as by providing real-time translation or by generating text-to-speech or speech-to-text transcripts.
Make recommendations for services and supports that meet their individual needs, such as job training or housing assistance.
Blockchain will be used to:
Create secure and private databases that store people's personal information, such as medical records, financial information, and legal documents.
Maintain data security and owner/authorized-person consent to strike the right balance between empowerment and ethical responsibility.
Track the provenance of data, ensuring that it is accurate and reliable.
Make it more difficult for people to share or sell personal information without consent.
The Future of Augmented Individuality
The future of augmented individuality is bright. AI and blockchain will revolutionize the way we think about supporting people with Intellectual and/or Developmental Disabilities.
By giving people with IDD control over their personal information and decision-making, AI and blockchain can help them achieve independence. Augmented Individuality means that people with IDD can live their lives on their own terms, with the support they need to succeed. For example, AI and blockchain could be used to help people with IDD:
Find jobs and housing.
Connect with other people in their community.
Access healthcare and other essential services.
Participate fully in their communities.
Break down the stigma associated with disability.
By giving people with IDD more control over their lives, Augmented Individuality will help them to make their own decisions to live their lives to the fullest.
A Person-Centered System of Intelligence is the Touchstone of Augmented Individuality
At Vest, we're developing technology to help people with IDD achieve Augmented Individuality. Vest's approach is based on the principle of ownership. Individuals with IDD own their own data and have control over how it is used. This gives them the power to make their own decisions and live their lives on their own terms. We're breaking the paperwork prison and tearing down vendor information silos to build a person-centered system of intelligence for people with IDD. We wrote a blueprint for achieving these goals in our DISS post.
This post is authored by Michael Pearce, a special needs attorney and the founder of Vest, a person-centered IDD records system. Vest's success underscores the viability of next-generation, personalized lifelong records systems designed with people, rather than providers, at the forefront.
We believe that advances in AI will soon enable a surge of solutions generating invaluable data to improve support for people with IDD. But the legacy folder/file/sync systems are incapable of handling this massive influx of personalized data. This proliferation of knowledge in the evolving “Ask/Answer” world underscores the urgent need for decentralized paradigms for IDD records managment.