A Strategic Roadmap for Personal Information Empowerment
“Knowledge is power,” as famously stated by Sir Francis Bacon. This timeless adage holds deep meaning today. Controlling our knowledge by owning and safeguarding our personal information is essential to preserve autonomy over our lives.
When others control our personal data, it severely restricts our empowerment and self-determination. We'd never tolerate that. Yet this is precisely the circumstance today for people who are navigating their lives with Intellectual/Developmental Disabilities.
Current IDD support systems have propagated stigma, fragmentation, and disempowerment by perpetuating compliance-driven, provider-centric records architectures. These systemically siloed systems squander resources and undermine autonomy for people with IDD.
However, exponential technologies like AI, blockchain and open standards now provide the ability to transform both mindsets and systems to align with the social model of support focused on empowerment of people with IDD.
We present our strategic blueprint for the Decentralized Intelligent System of Support - DISS - to usher in a future where people with IDD are respected as equal citizens with the right to control their own data to direct their own lives.
Our audacious goal is to spark paradigm shifts in disability policy, systems architecture, and data management design.
Our mission is to move society toward a future that respects people with IDD as individuals, and not just a diagnosis.
The DISS Strategic Roadmap
Phase 1 - Establishing Concept Viability
In this phase, we will publish seminal white papers that substantiate the technological feasibility of DISS. We will delve into the role of blockchain, AI, and open standards as pivotal enablers. Our central focus will be on user empowerment, steering clear of institutional and enterprise interests. The synergy of exponential technologies has the potential to align incentives between people with IDD and all stakeholders - parents, public agencies, health care professionals, and service providers.
Phase 2 - Overcoming Adoption Barriers
Leveraging the prospect of transforming the way we support people with IDD for the better, we will engage advocacy organizations, providers, agencies, and policymakers to provide input on critical system components. We will quantify the cost of the current legacy records system and the potential savings of DISS, demonstrating the human impact of siloed support systems, including stigma and discrimination.
Phase 3 - Development of Critical Components
We will deliver user-controlled records management tools and insights generation interfaces, facilitating choice. Decentralized intelligence supersedes centralized records in empowering autonomous decision-making for people with IDD. Feedback integration will optimize accessibility.
Phase 4 - Driving DISS Adoption
We will engage in education endeavors for concept buy-in and DISS adoption among crucial stakeholders - people with IDD, their families, health care professionals, service providers, and public agencies. Achieving industry-wide adoption of DISS by the end of this decade.
Thie Blueprint 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.
Notably, Vest's person-centered platform serves as the cornerstone for shaping the Intelligence component of DISS. Leveraging user data from Vest, we will be able to train AI-LLM within the real-world context of people with IDD, fortifying the practical application of AI in this domain.
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.