You may think it will suffice, but here's why it won't
Last week I wrote about the heart-wrenching PBS story of 80-year-old parents who hadn't made plans for their child with special needs. I believe that the cause of a large portion of these parents' stress and turmoil can be traced to the myth of the "Letter of Intent."
Sadly, we special needs parents have been told that we are responsible for writing a Letter of Intent that will hold all the keys to making sure our children will be OK after we're gone.
As I've learned, belief in a Letter of Intent (LOI) as an effective planning tool can only lead to procrastination, frustration, stress, and turmoil. And ultimately to turning 80 years old without having made any plans at all. Because the Letter of Intent for a child with special needs is a fundamentally flawed concept.
Disclosure: I work as the Customer Success Manager for Vest, an app that makes life easier for parents. Later in this post, I'm going to recommend that you try Vest. Because as the parent of an adult son with autism, I know that Vest really works! - KH
As a fairly well-organized teacher and mother, I began early-on getting a system together for "all-things-special-needs" as they related to my son. My classroom contained metal filing cabinets for every single lesson plan I created; why couldn't my home office or garage contain a few cabinets or crates for organizing the articles I collected and the lab results that started accumulating?
The teacher and mom in me learned more about special needs, and the piles of paperwork grew. One day, I stumbled across something called a Letter of Intent (LOI). It sounded serious, so I looked into it. The Letter of Intent is meant to ensure that future caregivers for a special needs child know that child's abilities, routines, likes, dislikes, and interests. A Letter of Intent could also include important information about doctors, services, and resources related to the health and well-being of the child.
Oh, and a "well-thought-out" letter of intent should contain the following: extensive family history, lists of relatives and friends with contact information, educational information including all services/goals/extracurricular/vocational information, medical information as it relates to doctors/dentists/therapists along with medical records and contact information, recreational activities, and information on social and behavioral aspects of your child's life.
And...take a deep breath, the LOI should describe in detail a typical day in your child's life including what they eat, what they do, where they go, who they see, how they take care of themselves, and when they sleep. Let us not forget employment guidance and goals, as well as residential care needs: past, present, and future. Oh, one more thing; the Letter of Intent should end with a final expression of love for the child.
Wait a minute. What?! If I wanted to create a Letter of Intent - and a good one at that, because of course I love my child so much that I would do anything for him - I had to sit there and write out alllllllllll of this information and pour out alllllllllll of these incredibly complex details onto paper? And then face this monstrous task all over again a few years down the road when things changed? And yet again as he became a teen...a young adult...? And continuing as I glide into my "elder" years?
I think not.
I get that a Letter of Intent is supposed to serve as an official document which communicates the knowledge I have about my child to someone who would be responsible for my child when I'm not there anymore. I get that it's important to pass along valuable information that only I have, so I can save the future caregiver from massive trial and error. After all, who knows a child better than a parent, and who better to write this Letter of Intent? It has to be done. But seriously, who is really going to do it?
Special needs lawyers and financial advisers will tell special needs parents they need to compose an accurate LOI, and they'll tell them to update it from time to time. It's imperative.
Yet, in fact, the Letter of Intent is not even a realistic soultion! The LOI is more of a benevolent myth that parents of special needs kids hear and accept. These attorneys and advisors are well-meaning and knowledgeable in their own fields, but they don't know first-hand of what they speak. I once had a financial adviser tell me he'd send me sample LOIs to use in composing my own; I never saw one.
I eventually got a special needs trust and a hundred other safeguards in place for my son. I knew in my heart that an LOI is a caring and critical gesture. So, what was I, or anyone else for that matter, waiting for? Do the Letter of Intent! It echoed in my head.
Not so fast. As I mentioned, I am a pretty organized individual. I could find that Macbeth lesson plan from two years ago in a well-marked file folder in a drawer labeled "Shakespeare" in a cabinet labeled "Senior English." But how in the world was I going to take my son's entire life and scale it down to a written letter that sufficiently detailed virtually everything anyone would need to know about him and his life?
What's more, when I thought about it, where would I store it so that others would have instant access to it? What would make it easy for someone to find? Would anyone know where I kept the typed version? Would I even know where I kept the typed version?
Questions swirled in my mind. If I handwrote something, I would have to rewrite the entire thing multiple times as my child grew up. If I typed it, I could add and delete things in the document, and I'd print out new copies with each update. I could mark certain folders in certain cabinets for anyone who might be looking for the Letter of Intent. I could provide instructions to all my "key people" so they'd know where to look and what to do in the event I couldn't care for my son or I wasn't around anymore.
I was organized - I could do that. I could actually have a separate page for each category in this ultimate and awesome LOI. One page would be for medications. One page for recreational activities. And so forth. But then my mind hit a wall. Family history? That's likely to take 5 pages. Medical records? 15-20 pages? IEP documents? Come on - we special needs parents know that one year's worth of IEP papers includes enough to fill the trunk of a car.
This Letter of Intent stuff was presenting problems. From how to compose it, to what to do as things changed. From where to store it, to how others would access it.
Facing such a hard and painful task, I gave up. It was a lot easier to think that my Shakespeare lessons needed my immediate attention, and the Letter of Intent could be on the back burner. As with many things in life we know are good for us, but we just can't do, I understood that the LOI was good for both my son and my mental health, but I kept putting it off until "later."
Fast forward ten years. I ditched my metal file cabinets in my classroom because everything was newly housed in my school-issued laptop. The crates in the garage however were overflowing with special needs documents. But not one of those crates contained a complete and wonderful Letter of Intent.
I'll be honest, it seemed like A) it was too daunting a task, and B) I'd have plenty of time down the road to do it. After all, I had a special needs trust. Bam. I'm good. But certain key people in my life made me keenly aware that I needed to document critical information about my son's life. The variety of reasons for doing so are vast, and I don't need to tell you what those reasons are - you know them.
My son needs - deserves - more than a paragraph-heavy document stored on a computer and printed out and stashed in a folder somewhere. I can tell you with certainty that if I printed out such a document, I'd need a wall of cabinets to house them. The truth is, if necessary, and when needed, NO ONE is going to find my typed Letter of Intent nor the printed copy in a cabinet somewhere.
Maybe Indiana Jones could locate it and decipher it, but even he would have to read through what, 200 pages or so, to find what works to help my son get to bed at night??
The kind of information needed by a caregiver or trustee is often specific and required urgently. Someone assigned to continuing care for my son is going to want information immediately; I know I would if I was taking care of someone with special needs! What if a medication dosage or two was skipped because of the time it took to search through a binder or a multi-page "Letter of Intent" for the up-to-date information on what he takes?
Some may say Well, I keep the medication chart in the kitchen where it's accessible. Or, another person thinks Hey, the school will inform my son's guardian about the bus schedule and what he gets in his lunchbox everyday. Often, we try to tell ourselves that in some kind of emergency where someone else has to step in for us, all will be well. It'll work out. My favorite: They'll figure it out.
We procrastinate, delay, and put faith in others where it may not be due. Yes, you could keep a medication chart in the kitchen. But what about all the knowledge one needs in order to administer that medication? Is someone going to figure out that certain tablets have to be crushed, while others can be chewed? That my son requires a special smoothie which has to be a certain flavor in order to swallow the meds? It's all a lot more complicated than posting a note in your kitchen. The note will fail and the LOI will fail.
Also, as I pondered how to approach this enormous Letter of Intent task, Northern California was in the midst of another fire season, and evacuations were happening within 15 miles of my home. The thought occurred to me, what if all my important documents were burned up in a fire? How good is a thorough Letter of Intent when it's a pile of ashes in a folder, in a melted plastic crate?
Your official LOI - if you even complete the task given the enormous constraints on your time while caring for a special needs child and working, etc. - is going to fail your child. Let's be really real. You, and I, are just not gonna get it done. And if you do a little bit and call it good, let's face it: it isn't going to help a future caregiver very much. So, understanding the futility of the LOI, we just give up and don't do it.
The Letter of Intent is a flawed concept that just doesn't work. I didn't do one. And I'm suggesting that you don't write a Letter of Intent. You read that right. Just don't.
Instead, we special needs parents need to think of a different way to get the job done.
A new way, a new path to construct a very detailed roadmap for the ongoing, seamless, and future care of our child. We must think about what future caregivers will need to know about our child. We have to consider making access to the information quick, easy, and understandable. But we don't want to leave a couple of hundred pages of paper lying there for someone to go through as they search for an answer to a question such as, Does he need medication before bed?
Wouldn't it be fantastic if there was a tool designed to manage everything you'd ever want to put in your LOI? It would be pre-organized. It would guide you through how to use it. It would make managing the mountains of special needs papers easy. It would house every important document, from stuff you scan and upload (like IEP papers) to stuff you create (like Everything You Need to Know about John's Medication.
This tool would allow you to work on gathering information about your child's life at your own pace. You wouldn't lose anything essential. With a simple login, you continue constructing a detailed and organized record of your child's life: their every need, their every like, their every routine. It's safely stored in the Cloud and instantly accessible to those you choose to share it with. You wouldn't be making someone search your laptop or comb through file folders or decipher written lists tacked to the kitchen bulletin board.
All. In. One. Place. As a teacher and a mom, I can appreciate this BIG TIME! It's a life and time saver for me right now since I am accessing files and creating schedules and keeping lists of all the doctors we see...and it will be a life and time saver for future caregivers as well! Well, the good news is that this amazing tool really exists: Vest is available right now...it IS the tool described above. It does exist and you can get this done. www.vestlife.com
Don't be overwhelmed by the thought of doing that mythtical Letter of Intent. Instead, be inspired to create a Vest for your child with special needs. Bring out the teacher in you and get going on telling your child's story. After all, your child's life is not a list.
