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  • Writer's pictureMichael Pearce

Breaking the Paperwork Prison: How Person-Centered Records Empower People with Autism

Embracing the Inevitable Implosion of Service Silos
Ypiung child with autism holding leaf

The current system for managing personal records for people with autism is a mess. As life unfolds, vital information becomes dispersed across the parent/caregiver's brain and computer, while service records remain siloed in myriad provider systems.

The fallout is lamentable - chronic stress for parents, care that lacks continuity, transitions that get disrupted. Ultimately, with key information restrained within idiosyncratic caregiver systems and unyielding vendor silos, a person with autism is deprived of control of their own records. Disempowering, to say the least.

Conversely, we’re living in a transformative time for improving the lives of people with autism and their families. Promising new strides in AI present opportunities for improved diagnosis, treatment, therapy, social skills, education, and overall well being.

The thing is, these innovations will generate a ton of new information and records. And the current provider-centric records model? It's already dysfunctional. It can't handle the AI data tsunami coming its way.

The solution? We need to shift to a decentralized records system that revolves around the person. By taking this approach, we will:

  • Ditch the fragmented records silos and replace them with one lifelong records system tailored to each person.

  • Ensure critical information actually gets preserved properly.

  • Empower individuals to access and manage their own records.

  • Help people navigate life more smoothly.

This next-gen records system needs to be about the person, not the providers. It needs to be decentralized around the individual, not fragmented across various black holes where records go to die.

This way we can finally move towards full empowerment and continuity of care for people with autism and other complex care needs. They deserve nothing less.

The current records system is outdated

It’s 2023, but using folder-based records systems built a half-century ago make life frustratingly hard for parents and their child who are already juggling myriad tasks and immense challenges daily.

Bill Gates circa 1995 on his pc

The legacy folder system for personal digital records was pioneered by Xerox in the 70s. In the 90s, Microsoft launched Explorer with the folder/file metaphor to emulate how a computer stores, accesses, and processes information.

Folder-based systems require you to create hierarchical silos, making related data hard to connect. This can make it difficult to find the information you need when you need it.

Traditional folder-based systems struggle to accommodate people with complex care needs. Siloed records make it difficult to connect related data points over time, hindering caregivers’ and service providers' ability to make fully informed decisions.

As people accumulate new data, files, and treatment plans, folder structures fail to adapt, making relevant information hard to access when needed most. The current folder-based systems are ill-equipped to provide the comprehensive and holistic support and care that neurodiverse people are entitled to.

The folder/file metaphor worked well in the 90s when the personal digital information era was first born. But now, in light of the large amounts of dynamic information that must be managed for the support of people with complex care needs, the ancient folder-based record system is cumbersome, stressful, and cannot effectively meet their unique needs.

Folder-based records hold dangers for continuity of care

Beyond day-to-day inefficiencies, folder-based records also cannot adequately support a child's lifelong journey with complex care needs. As parents age, keeping these legacy folders current and organized becomes increasingly difficult. File chaos is a common consequence for elderly parent/caregivers.

Messy Desk of  Parent of Child with Autism

The parent/caregiver's records system can easily become highly personalized and idiosyncratic, and largely useful to only the parent.

Scattered records, nested deep in structures only familiar to the parent/cargiver, make transferring the child's records to new caregivers complex if not impossible.

Old-fashioned, folder-based records simply cannot do the job.

Folder-based records hold dangers for subsequent support
illustration of silos holding child with autism key information

Parents become dedicated record-keepers in order to coordinate care, services and support for their child over decades. They become adept at navigating service provider systems. But the child's complex care journey lasts far beyond the parents' tenure. Folder-based records cannot achieve the ultimate goal of persisting reliably and accessibly throughout the child's lifespan.

These complex systems, based on folders and files controlled solely by the parent/caregiver and service providers, quickly become obfuscated and effectively inaccessible to others down the road. Outdated folder-based systems fail both parent and child in the long run.

File Dissonance, Overwhelm & Chronic Stress
Stressed out Mother of Child with Autism

Folder-based files are a huge pain and chronic source of stress for parents to use.

Folder-based systems do not reflect how parents and their children with complex care needs actually think and live. Keeping records in deeply-nested folders makes it difficult to find what you need when you need it.

With folder-based records, you have to dig through multiple nested folders as you try to remember where you put things.

Files buried on devices get lost or corrupted. Folders in the cloud are held captive by vendor subscriptions. Over a lifetime of care, critical information is fragmented across service providers’ silos. Folders configured for one caregiver’s needs do not easily adapt for others.

Papertrails spanning decades resist coherence. With all of the vast array of information acquired across the lifespan, personal records management has become a source of chronic stress. Files lost. Folders unfathomable. Wasted time. Unnecessary delays.

Not being able to find the right records at the time they are needed can jeopardize care and hinder positive outcomes. This is the daily reality of folder-based records for people with complex care needs and their parents.

The new paradigm: Person-Centered Records
image of ipad with the Vest App for autism records

The outdated folder paradigm must give way to a system designed for the future. The stakes are too high to settle for disjointed folders and files.

Parents lie awake asking: How will others fully understand my child's needs? How can I ensure the right care decisions are made? They worry critical information will be siloed, lost, or inaccessible when needed most. What if I'm not there and a doctor doesn't have the full story?

Parents and their children deserve better than the status quo. They need complete, person-centered records to set their child, and themselves, up for lifelong success. That's why Vest was created.

Our person-centered records system goes beyond folders to truly meet complex care needs. Vest completely reimagines records, uprooting restrictive files and structures. Instead, we created an intuitive system tailored to each person's unique life and needs.

At Vest, we vest ourselves in your child's care and support, building a holistic digital space for their lifetime journey. Like a protective vest safeguarding the most precious possessions, Vest securely stores memories, insights, guidance, records, and more in one unified place.

We designed Vest as a custom fit for each child and family. Records adapt as needs change over time. Vest grows along with your child, keeping their story connected. This is the new metaphor - a vestment committed to the individual’s lifelong wellbeing.

With Vest, parents can now find peace of mind, knowing their child's records are truly complete, connected, and centered around their needs. They can efficiently manage complex care, coordinate multiple providers, and rest assured others will have the full story for informed decisions.

Vest empowers parents to share their child's unfolding journey on their own terms, enabling true lifelong support.

And this is just the beginning - the possibilities to enrich lives through person-centered records are endless. Vest represents an incredible leap forward, with so much more innovation yet to come.

Beyond the Folder: A Person-Centered System of Intelligence

chart of lifetime caregivers for person with austism

By leveraging advancements in AI and blockchain, we aim to create a secure, decentralized network where each person's critical information can be stored, accessed, managed, and protected across the lifespan.

A person-centered, decentralized record system for people with autism and other complex care needs would bring together records from all of their service providers over their lifetime. For example, it could integrate healthcare records, IEPs, therapy plans, residential histories, and eligibility info into one comprehensive profile accessible across providers.

This continuity of information would allow providers to better personalize care and ensure consistency for the neurodiverse person. The decentralized records system would integrate health care, educational records, therapeutic plans, employment histories, independent living assessments, and government program eligibility data.

By building the records system around the indvidual, we consolidate records across education, healthcare, employment, and services, to create a truly longitudinal understanding of an individual across the lifespan of care and support.

This system would result in substantial cost savings by significantly improving coordination of care and reducing repetition of assessments. Service providers would have access to a comprehensive profile of the person's unique needs, styles, supports, progress and challenges over time. This continuity of information across life stages and transitions would allow providers to better personalize care and ensure consistency.

Moving away from traditional folder-based systems will lead to a more fluid and flexible organization of information. With AI-powered data management, information can be contextually organized and accessed without rigid folder structures. AI algorithms can learn from user interactions, preferences, and behaviors, leading to personalized information organization and efficient retrieval of relevant data.

A decentralized system with open standards can promote interoperability between various platforms and services, enabling data portability and reducing vendor lock-in. Blockchain technology can provide an immutable and auditable record of data access and changes, fostering transparency and trust in the system.

Ultimately, people with autism would have primary control of all of their records. This transparency and portability of information ultimately gives the person more control over their ability to make their own decisions for care and support.

Fractured records silos will become an empty remnant of the past. While collaborative policies and infrastructure are still needed to fully realize this vision, the potential benefits are life-altering. Focusing first and foremost on enhancing self-determination and empowerment for neurodiverse persons will be key to driving adoption of this transformative decentralized records approach.

Leveraging Blockchain for a Decentralized Records System

illustration of AI and Blochain as solutions for lifespan autism care

Current records management for individuals with autism is fragmented, with information siloed across separate repositories maintained by different providers and agencies. This fragmented system leads to poor accessibility, lack of coordination, and disrupted transitions. There is a need to shift towards a unified, decentralized approach focused on the individual.

A decentralized system will allow convenient access to a comprehensive overview of an individual's records across stakeholders, enhancing accessibility. It will also enable efficient coordination between caregivers, seamless transitions across services, and greater autonomy for individuals over their information and care choices. However, robust privacy and consent mechanisms must be integral to such a system.

Blockchain technology offers a promising way to build a decentralized records management system with stringent security. Its distributed ledger architecture allows records to be stored securely across multiple nodes on a decentralized network. Smart contracts can encode complex access rules to ensure only authorized access. Encryption techniques enable selective sharing of encrypted data with permitted parties. Hashing algorithms make records tamper-proof.

Specifically, blockchain enables decentralization and maintains privacy through:

  • Distributed ledgers for unified access to records across network nodes

  • Smart contracts that enforce access rules and consent protocols

  • Cryptographic encryption for secure, selective sharing of information

  • Hashing algorithms that make records tamper-proof

  • Zero-knowledge proofs for verifying credentials without disclosing personal details

With individuals and/or their parent/caregivers controlling disclosures from their digital wallets, blockchain facilitates consent, authorization and data sharing. This helps create an integrated records system focused on the person. It leads to improved accessibility, coordination and transitions between providers for individuals with autism.

Blockchain also enables lifetime records for long-term insights. Overall, blockchain paves the way for more unified, streamlined and person-centric systems to improve outcomes for individuals with autism and other complex care needs.

Most importantly, a decentrailized system of intelligence empowers individuals with greater autonomy over their data and care.

Breaking the Paperwork Prison - The Time is Now
Sticker showing how Vest is centered on helping people with autism and other neurdiversity

At Vest, we’re honored and excited to be in the foundational stage of this vision for a person-centered records system that better serves people with autism or other complex care needs.

The path forward is clear. Outdated folder-based records systems are failing our most vulnerable. Together, we can create a new paradigm centered around empowering people with autism and other complex care needs through person-centered records.

The technology is here. The need is urgent. We invite you to join us on this journey to break the paperwork prison and build the decentralized person-centered records system of the future.

Michael Pearce,

Founder & CEO, Vest Life, Inc.

image of pc and phone to show how Vest works as person-centered app for people with autism

Vest represents the vanguard of the person-centered records revolution. With an intuitive records system tailored to each person and family, Vest provides peace of mind. Records stay up-to-date, connected, and accessible as needs change over time.


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