Empowering Special Needs Parents in the Digital Age
If you are a parent of a child with special needs, then you've likely seen the advice that you should prepare a "Letter of Intent." The goal of the LOI is to provide others with guidance and information for your child's care when the day comes that you can't be there.
In this post, we're going to talk about the importance of this goal and explore why the Letter of Intent is an inefficient way to meet it.
The Most Important Goal
The purpose behind the special needs Letter of Intent is increasingly essential. In our complex world, managing intricate support systems for a child with special needs is a monumental task.
It's essential for future caregivers to understand not just your child's health requirements and limitations, but also who they are as a unique individual. The traditional concept of using a "Letter" to convey this crucial information has become outdated.
Originally conceived in the 1970s—before the advent of personal computers, digital files, email, and file-sharing—the "Letter of Intent" was a product of its time. Back then, a handwritten or typewritten document was the only available medium to guide others in the care of your child. But how times have changed!
The Need is Evergreen
I'll never forget the tearful gaze of a mother as she handed me her 10-page Letter of Intent for her son with autism. "It doesn't apply anymore; he's changed so much," she said, “Please shred it.”
Like many parents, she'd spent hours crafting a document that was quickly rendered obsolete. And like many parents, she let me know that she was not going to spend her time and energy writing another LOI, "There has to be a better way."
According to a MetLife Survey*, 84% of parents have not completed a Letter of Intent for their child with special needs.
After 25 years working with thousands of parents, I reached the conclusion that the problem isn't lack of effort from parents—it's the outdated system they've been advised to follow.
Why the Special Needs Letter of Intent Falls Short
For years, a physical letter stored in a binder was the go-to method. But this approach is fraught with limitations:
Inflexibility: As needs change, full rewrites required.
Security Risks: No control over access.
Limited Scope: Focused on limitations.
While cloud tools like Google Drive or Dropbox can help with record-keeping, they still can’t address:
Selective Sharing: Can't customize who sees what.
Real-Time Updates: Making changes is cumbersome.
Information Overload: Deeply layered files are hard to find.
Data Silos: Your private cloud is a fortress. No-one else gets in.
Coping With Hard-Stop Emotional Barriers
Making plans for a child's future care is an emotionally difficult task for any parent. It can be excruciating when you have a child who is wholly dependant on you for all of their daily needs.** It's painful to think about the possibility of not being there for your child, and the fear, guilt, sadness, and anger that can arise can make it difficult to focus on the planning process.
In my 25 years of experience assisting families with special needs , I've observed that these "hard stop" emotions often serve as the primary deterrent for parents in moving forward with plans for their child's future care.
Transforming Special Needs Planning in the Digital Age
The days of relying on checklists and written letters for special needs planning are over. Digital solutions allow us to capture a holistic picture of your child's life, far beyond just health conditions and limitations.
The goal is dynamic, not static. It's about conveying your child's multidimensional reality—their likes and dislikes, effective therapies, evolving needs, and daily routines. And then making sure others will know your child as a person, and not just a list.
Vest: A Solution Tailored for Special Needs
Just like Uber was not just a better taxi, but an entirely new way of getting from point A to point B, Vest is not just an enhanced Letter of Intent. It is an entirely new way for special needs planning.
Vest transforms the entire planning experience for your child with special needs. Our dynamic platform reflects the current reality of your child's life. It's not just another repository for records, checklists, or instruction letters. Vest make life easeir with real-time updates, controlled sharing with trusted caregivers, and customizable profiles.
We believe that our person-centered approach is a promising alternative to the heart-wrenching Letter of Intent. In fact, many parents have told us that using Vest is actually therapeutic in its ability to let them describe their child’s complex life in bite-sized chunks, based on the reality of their daily life.
How Vest helps achieve parents' goals:
Secure Storage: Modern encryption ensures data safety.
Customized Access: You decide who can see what.
Real-Time Updates: Easily make changes to stay current.
Holistic View: Captures your child as a unique individual.
Transferable: Vest stays with your Child for life.
Vest's person-centered approach takes the focus off of your mortality and helps you plan for your child's future with a positive, holistic approach.
It's 2023.
The Letter of Intent is outdated.
Welcome to the digital age with Vest!
This post is authored by Michael Pearce, a special needs attorney and the founder of Vest. Vest's success underscores the viability of next-generation, personalized information systems designed with people, rather than providers, at the forefront.
We believe that forthcoming advances in AI will catalyze a multitude of solutions, generating invaluable data that can enhance support for people who are neurodiverse. This burgeoning body of knowledge, especially relevant in the evolving Ask/Answer landscape, emphasizes the urgent need for decentralized approaches to empower neurodiverse individuals in achieving independence and an autonomous quality of life.