Late yesterday afternoon a comment came in that really concerned me. I responded to it — and have included it below — but believe it is a great topic for today’s post. The comment was related to yesterday’s post, Friday:FES Therapy Cycle, where I share my concern of paying for this new equipment and everything else that is due this year… and for years to come, actually.
I left my reply and went about the rest of the night. Yet, I couldn’t get that comment off my mind. I mean, sure, it was late afternoon and many people wouldn’t even see it. I could just let this roll off, content that I explained everything well. The only thing is, I must make sure others aren’t conjuring up the same thoughts. Hell, I’m all in favor of skepticism — or am I? — but not without reason. I appreciated and consider feedback, even when done with malice or lack of foresight. My integrity, in the public’s view, is important to ensuring Ryan continued support. Not to mention, I take pride in people believing what I say is the undisputed truth. Hey, I’m an open book — real and raw — if ever there were one. Centerfold, and all.
So, let me just go right to the reader’s comment, followed by my reply.
Comment: I’m a little confused as to why you don’t use the trust fund money for this purchase. Is it earmarked for something else? It seems from your post, and please correct me if I’m wrong, that all the money that people have already donated is just sitting in a bank somewhere. Hoping you have had a peaceful day.
My Reply: I’m happy to set it straight for you. Who knows, maybe someone else, like a new reader, was wondering the same thing. I should always remind myself that not all people are abreast of all aspects of brain injury, or even Ryan. Traumatic brain injury is expensive when it happens and for the rest of one’s life. I would be hard-pressed to find any illness or injury that is more so. In fact, I’ll just state there isn’t any. It touches every part of the body for a lifetime. Most therapies and treatments, including some expensive drugs and durable/therapeutic equipment, are not covered by insurance and Medicare because everything is “experimental” when it comes to brain injury.
Oh, how I wish the Trust Fund just had money sitting in the bank somewhere. It would be nice if we could get to that point where we could start saving for future care and treatment. I want this as the ultimate goal (although not very likely, save an unforeseen sizable donation). But, we must use this and our personal funds all the time (We always exhaust our personal money before tapping into the fund, but in the end they both are entirely expended). Long time readers will know we used it to help pay his medical team, like IBRF last year ($100,000) and again this year (another $100,000), purchase the HBOT ($20,000), purchase the Infrared Therapy Helmet ($6,000), and… well, it never ends. Notice, I said “help pay”. We are grateful for all the help we can get for Ryan. It has given him a chance. It has provided him comfort.
So, I guess you are correct on two assumptions and completely wrong on the third: We are using the money from Ryan’s Special Need Trust Fund and what we have was earmarked to help pay for other things (but it is no longer), but it is not “sitting in a bank somewhere”.
On a final note, it’s humbling and embarrassing enough (as I stated in my post) to be so needy. Although I hope you didn’t mean for your comment to come across somewhat suspicious as I first thought (but decided to give the benefit of the doubt), it bothers me that someone might actually think this way, even when some quick math would prove otherwise. It never even crossed my mind!
Your question is a perfect example of why I like the ability for anyone, without restriction or condition, to leave a comment on this website. There are questions, concerns, and suggestions that I would never anticipate.
I’m not sure where the reader got the idea that all the money is sitting in trust. I don’t believe I even inadvertently implied such a thing. At least I hope I didn’t! Anyhow, I thought it was painfully clear that us needing to float the purchase on a credit card to pull together enough personal funds to cover the difference was evident… evidently not.
Fore the sake of clarity, Special Needs Trust Funds are not really complicated. They’re simple, actually. Let me do my best to explain it in a single sentence: What is donated to Ryan, must be spent on Ryan… with specific conditions and restrictions.
I’m fairly satisfied with that explanation, but there’s more. It’s administered by a third-party, through an attorney, who must approve every expense and account for every penny coming in and going out. You see, Sue and I recommend a purchase (as Guardians) and it must clear two more steps: 1) meet the legal criteria, and 2) be approved by the third-party Fund Administrator. This framework protects all involved, but especially Ryan. This is exactly how we would want it anyhow, since Ryan could outlive us. We feel Kari (our daughter) would be best suited to represent Ryan’s best interest and we would like for her to eventually administer the Fund. Rather than explain more, here’s a one page summary that you can better educate yourself, if you’re interested.
For Ryan’s sake, I hope someday “all the donations are just sitting in a bank somewhere, and I think no one would have a problem with that either.