Special needs families often feel alone and isolated, but there is much changing in how we advocate for and support special needs families. The internet has been a game changer and allowed us to connect in ways that would have been impossible a few years ago. There’s a lot to like about the continuous investment in technology solutions and we are now starting to even see technology created just for the special needs community. I love that others are trying to solve our particular pain points. One of the areas that technology is providing significant advancements is in the area of digital file organization and sharing. I have touted the virtue of going paperless and love seeing this trend advance. One of the areas finally being addressed is solutions that help us in the drafting a Letter of Intent. Unfortunately, 84% of families with special needs don’t have a Letter of Intent in place. Up until recently, I could be included in those figures as well. An online tool called SpecialVest makes all the difference.
So, what’s so important about a Letter of Intent? I previously wrote about the criticality of a letter of intent for special needs families and here’s a quick review. A Letter of Intent serves as your voice for your loved one. The whole purpose of the letter is predicated on providing information to caregivers once you are gone and no longer able to be their voice. Let’s face it, it is likely that no one knows your child like you do and you are probably the only person that has the complete picture.
You know their likes and dislikes. You know their preferences and routines. You know who their friends are, what they like to do for entertainment, and what they like to eat. You also know with excruciating detail the specifics about their condition. You know their medical history and which doctors are providing them the best chance at life. You are intimately familiar with their medications and what strategy is being pursued by their specialists. You know what therapies have proven to be effective. You’ve got their emergency medical protocol ingrained in your brain. You know their physical limitations. You know where they stand with their education and what has been agreed to with their school. You probably have strong feelings about their spiritual upbringing and want to ensure their religious needs are being met. These are all topics that you as the care giver are in the unique position to understand, and no one else will likely have the insight and experience to match.
So how do you adequately prepare others to carry on in your absence? By taking the time to draft your Letter of Intent. And it’s not just prudent to plan for the day you are incapable of providing future care, it’s also prudent to catalogue and provide instruction for others that may be in the position to help you NOW. Special needs parents often feel like they are alone, but what if you where able to provide very specific instructions and guidance to others that are willing to help today? Letting others into your life can be incredibly fearful, but once you do you’ll wonder why you waited so long.
During my original post on the subject, I stumbled across a product called SpecialVest, a special needs navigator. I didn’t know much about it at the time and it has since continued to be improved since I was first introduced. I don’t have any material relationship with the SpecialVest team, so what follows is an unbiased review of the product. In fact, my commentary is wholly derived from personal use of the tool in my attempt to get our own house in order. I’ve been using SpecialVest for the last few months and liked it so much I recently just purchased a full year subscription with the intent of renewing every year hereafter. So, what’s to like?
SpecialVest; a Review
The SpecialVest is a website designed to compartmentalize, organize, and store all your critical information. If you have multiple children, you can create a vest for each child. While I initially looked at using it primarily for our special needs son, the reality is if something happens to my wife and I, he will not be the only one affected. Building a second vest for our other children makes sense as well. The vest has over 20 different categories to sort and store information about your family and your special needs child. Putting together such a comprehensive and detailed overview will take time and it will take some effort to collect not only the data and files, but also to carve away the time to sit and think about the information you want to convey to others who may not really know your child the way you do. This can be an emotional task and you will likely not be able to do it all at once so will need to develop a plan of attack to chip away at it bit by bit.
My wife and I decided to divide and conquer. I took care of uploading all our digital files. I scanned, sorted, and stored our important documents. She focused on the areas that required insight into who our son is. SpecialVest isn’t just a digital storage tool, if it was, alternatives like Evernote would work just fine. What makes SpecialVest, well special, is that it allows you to build around the idea of who your child is and convey their humanity to others. This is where my wife, as a mother can, described exactly who my son is, what kind of person he is today and our dreams for who we want him to be. It’s not just about the data, the data doesn’t tell his complete story.
SpecialVest excels in this area. The first section, or “pocket” as SpecialVest calls it, is an About Me page. This page is an introduction to the big picture about your child. Unlike many of the preformatted letters of intent you may find online, this area allows you to be creative. It allows you to describe what your child is like, who they are, and impart into others the things that make them very real to you as a parent. It is further broken down into three sub categories called My Story, My Personality, and the Top 10 Things About Me. Everyone has a story and knowing the path we have taken to arrive at where we are today is just as important as charting a path for our future. Admittedly, this area was more thought-provoking that the rest and required some time to think just what we wanted to express to others.
There is a section called Emergency. Here you can list out your emergency contacts to include who they are and contact information. Under this section is a place to list your health insurance information, your preferred doctor, and list hospital emergency rooms you have probability visited in the past, and who may likely know your child, or at least have records of your child’s specific requirements. Remember, you are not there to advocate for them in these moments, so it’s important to identify what someone needs to know in an emergency. There are ten additional emergency related “pockets” in this category.
Under the Education section you will find areas for your child’s school, their teachers, and para-educators or one-to-one aides. Not only does it serve to provide contact information as well, there are also pockets where you can capture how they learn, what works for them in the classroom, upload their individualized transition plan (ITP) and any progress reports and behavior modification recommendations. There is another section to catalogue your child’s Individualized Education Program (IEP) agreement with the school district to include both current and past IEPs, progress reports, legal and due process issues, parent and school team, as well as classroom accommodations that are needed or have been agreed to.
The Healthcare section is fairly comprehensive. In this area not only do you list pertinent information such as a seizure protocol, but also medications, allergies, insurance information, doctors, and durable medical equipment. There are also pockets to account for the many different therapists you may see on a regular basis to include, speech, music, physical, and occupational therapy. Each of these sections can include information about the people and the programs helping your child achieve their daily living and work skills. You can upload routines, therapists, and progress reports.
One of the most important sections is called Diagnosis. For anyone who has had to deal with the state or Federal Government, you know just how important it is to have access to this information. There will be little help from the social safety net without first proving your need, and this all starts with a diagnosis. In our case I uploaded not only a fact sheet about what Dravet Syndrome is, but I also uploaded our neurologist reports as well as the genetic testing we had done to identify what was causing our son’s seizures. These were hard-fought documents, and ones we know we will be asked to reproduce again and again as we justify the medical care our son will require throughout his lifetime.
Many special needs children may have specialized or restrictive diets. The Diet and Meal Plan section allows you to describe the limitations and feeding guidelines you may have for your child. You can list preferences in both food types and restaurants. What we found to be especially helpful was uploading our son’s ketogenic diet meal plan to include ratios and recipes, as well as strict guidelines on what he can and cannot have to eat to prevent dangerous consequences for unsuspecting caregivers.
Religious and spiritual wishes are also an important section for many people. You may want to list your religious beliefs and philosophy and your preferences for how you want your child to be raised in your faith. You may also want to list the place of worship they currently attend, and if they regularly participate in specific programs or have caregivers who help them attend.
One of the pockets I really like is called Day to Day. Many of our children are incredibly routine driven. This can be both routines in terms of daily activities and times, but also how to deal with phobias and anxieties, and how to properly redirect behaviors. You can detail the routines for getting dressed, or how to get ready for bed. Identifying motivations and techniques that you have found to help your child navigate their day will undoubtedly help the transition between yourself and another caregiver.
Because of the nature of this blog, you might suspect my favorite area is for the accounting of the many different financial and legal aspects of our children’s lives. Under the Financial pocket you can upload and provide information such as Supplemental Social Security Income (SSI), Social Security Disability Income (SSDI), and First and Third-Party Special Needs Trusts, Conservatorship or Guardianships, and Powers of Attorney. Being meticulous in cataloguing these services will continue to be important and having a dedicated area to upload and store the many different documents you will receive from the Social Security Administration and Adult and Family Services departments is important.
So, you probably get the point by now that SpecialVest is what you make of it. There are dozens and dozens of categories and subcategory “pockets” that help structure and account for the vast amount of information you will want to share. I haven’t’ even discussed the areas for social and activities, jobs and employment, and assistive technology, transition information such as housing, independent living arrangements or residency requirements. You get the point.
What I like the most
The most powerful part of SpecialVest is not just pockets concept. There is nothing novel about the concept of a cloud-based filing system. If all you were looking for was a way to upload and store your digital files, then you could just as easily use Google Cloud or Microsoft OneDrive, or even Evernote. Why SpecialVest won me over is the ability to segregate and share just the right amount of information with the right people. You choose what you want to share with whom.
Not everyone likely needs the same access. You probably wouldn’t want to share the same information with a part-time caregiver as you would a family member or even your trustee. If we were to leave our son with a caregiver for any period, there are likely only a few areas we would want them to have. You might only want to share a seizure protocol or the emergency medical section. Perhaps you have detailed instructions for your child’s medication or specialty diet. For a trustee or key family members you would likely want to share more detailed information like his complete medical information, financial details, and legal documents. When you decide to share a section, they can access the information, but they can’t change it, so you don’t need to worry about someone going in and messing it up or accidentally deleting your data.
Things to Improve
SpecialVest appears to still be iterating and there are a couple of things that I wish they would improve on. There is an annoying bug that doesn’t link my son’s name to the notes in each section. Rather it refers to him as “None” throughout. I suspect it is just a piece of broken code that is failing to populate his name. It’s not a deal breaker but does need to get fixed.
The second area I think could be improved is for them to create a digital Rolodex for the people in my son’s life. There are sections to list out members of your family and other caregivers and key people such as advocates, trustees, babysitters, and respite providers throughout the many different vest pockets. However, it would make it easier to add people if they could add a rolodex function with fields for contact information and addresses as well as a list function so you don’t have to sort through the individual pockets. Again, these are not critical faults, but something I would like to see as they continue to make improvements.
Lastly, where’s the app? If SpecialVest wants to improve on both ease of access and utility, they need to develop an application for iOS and Android. In 2018, 58% of website site visits were from mobile devices. Additionally, mobile devices made up 42% of total time spent online. One of the things I liked most about Evernote was the ease in which I could scan in documents with my phone and immediately upload them to my Evernote account using applications on my smart phone. SpecialVest needs to develop the same accessibility.
Collecting and cataloging all this data is not easy. Ultimately, it will be up to you do decide how much time and effort you are willing to put in to build the complete picture. You will need to develop a plan of attack and build overtime by breaking apart the sections and focusing on one section at a time. This isn’t something that needs to be perfect from the start. The more you use it, the better it will become. Don’t be like the 84% of families who haven’t taken the steps to put together a letter of intent. SpecialVest allows you to try for free up to 14 days committment free. Thereafter, they charge a modest $3.99 a month or discount it 15% if you sign up for a whole year at $39.99. If anything in this post resonated with you, go ahead a sign-up for SpecialVest, you’ll be glad you did.
Michael from Specialvest reached out and I provided him the recommended fixes for the “Thinks to Improve”.
He agreed the rolodex function would be a useful tool and will be sending it to his coding team. Hopefully we will see that function added.
Regarding my complaint about the broken code refering to my son as “None”, turns it it was simply user error (sort of)! Under the “Settings”, you have three fields to enter your child’s name; First, Last, Nickname. My son doesn’t have a nickname, so we didn’t fill that particular field out. Turns out if you leave it blank, it defaults to “none”. Once I reentered his name into the “nickname” field, it populated correctly throughout the vest.
Many thanks to Michael and the SpecialVest team for making such an outstanding product, but more importantly, being willing to teach, iterate, and improve.
Categories: Estate Planning