ROI is something that is highly discussed in the business world, but you hardly ever hear this word in the special needs world. In my opinion, this is a big mistake. ROI needs to be as common to our vocabulary as the words “therapy” or “progress.”
In the business world, few actions are made without a thorough evaluation of ROI. If we spend $1000 in advertising, will the results bring increased revenue? For every dollar invested, how much will be made? If a machine is puchased, how will it improve the company? Will it increase revenue by saving time? By increasing production? By producing a product that can be sold for X amount of dollars? Sometimes the results are very specific and can be pinpointed to the exact dollar. For every $1 dollar invested, $5 will be earned. Other times, there are only vague projections and it is impossible to pinpoint specific numbers.
Stay with me. I know must of us don’t like thinking about business but I think it’s important to make this connection. Because we in the special needs world are the most taxed for resources – money, time, energy. So EVERYTHING needs to be evaluated from the point of view of ROI.
In this blog I have talked about a lot of different therapeutic modalities. There are literally a MILLION ways of spending your resources (Time, Energy, Money). There are different therapies targeting different developmental aspects, nutritional supplements, organic foods, equipment, lots of different types of assistance. So how do you choose?
I figured I’d write down some of the things I consider when trying to make decisions.
* Free is never really free. Many people go to traditional therapies because they are free (paid for by the state or federal government) or covered by insurance. What we don’t realize is that these therapies have a heavy cost in time and energy. Energy for the parents in getting to the therapies, energy expended by the child, and time. Not just the time spent in the therapy, but the time (months, years) lost if the therapy is not effective. So before you do something because it is free, think again. What is the REAL cost? I can assure you, it’s MUCH greater than most of us realize.
* Is is sustainable? What can offer the maximum impact for the least amount of resources? For example, there may be a therapist that is AMAZING but is extremely costly, requires a lot of TEM, and is very difficult to incorporate. So although taking your child there would be the best, is it really? Would it be better perhaps to settle for someone who is slightly less effective but more sustainable?
* By choosing a program, what do you have to leave out? There are many therapies out there that offer home programs. These can range from being VERY time consuming and demanding, to minimally demanding. Whenever you are doing a therapy with a home program, you have to be clear about what you’re leaving out in order to implement the home program. Perhaps this home program can improve cognition, but what are the costs for the child’s motor development? Or vice versa?
* How does the program affect the rest of the family? There are so many stories about how siblings are affected by having a special needs child in the family. Jodi Picoult has written a couple of books that delve on this topic and are worth reading. I think it’s really important to consider this!
* What is the cost of function vs happiness? Perhaps a therapy can provide improved function but at what cost to the emotional state of the child? And what about long terms vs short term happiness? Perhaps short term unhappiness leads to long term function and happiness, but how/where do you draw the line? How do you know that the program is going to yield long term gains?
I know more than anything these are just questions to be considered. And there are many many more. But I figured it would be helpful to raise some of the issues.
Me, personally, when I analyze a therapy, I try to look at the following:
* What is the cost of this therapy vs others?
* What is the best case outcome of this therapy and the worst case outcome?
* If all we get is the worst case outcome, will I have felt that the investment was worthwhile?
* What am I leaving out if I do this therapy with Nathan?
* How will this affect his emotional well being? What about mine and Owen’s well being?
* If I don’t do this program, will I always wonder and feel that I left a stone unturned?
Obviously, I have made many poor choices in the last 3 years. In wanting to do too much I don’t do enough of anything. Mainly because I didn’t have a whole lot of clarity about the points mentioned above. Lately I have thought a lot about this and am a lot more conscientious of these issues when making decisions. Which is why I didn’t send Nathan to the state preschool. The ROI just wasn’t there. Which is why we are here in Santiago Chile doing Medek. The ROI looks favorable to me.
Generally, I am also trying to pick ONE thing/doctor/therapy/practitioner in each category and stick to it:
* Physical development: Medek
* Biochemistry: Dr. Kenny
* Nutrition: Organic foods and GFCF diet
* Supplements: those focusing on brain development
* Speech development: Dynavox
* Exercise: swimming in the pool
* Structure: Rolfing (and soon to resume ABR)
* Overall health: BodyTalk
I am still missing a few components but in general, we are getting closer and closer to having a STAR team and program for Nathan!
Now here’s the twist. We have tried so much: stem cells, auditory integration, CME Medek, traditional PT, OT, ST, DT, ABR, AIAHP/REACH, suit therapy, and more.
Can I honestly say that Nathan has made significan gains from all of these things? Nathan still can’t hold up his head, roll, sit on his own, or speak. He has minimal control of his body and minimal use of his hands. But what I can say is that he hasn’t regressed. He is very very healthy. His cognition and understanding seems better. He seems more responsive and aware when I talk to him and recognizes more and more words and objects. He can now bear weight on his legs and squat to stand with balance support. He has decent head control when he is excited. He hasn’t been hospitalized since Dec 2006. He hasn’t needed any surgeries other than the shunt. He eats quite well orally. He can drink decently from a cup. He is alert and interactive and happy and funny. Is this sufficient ROI for the amount of time, energy, and money that we have spent on Nathan’s rehabilitation? ABSOLUTELY! I am grateful for everything Nathan has going for him. Would I like more? Sure! That’s why I am more selective now about ROI.
Anyways, I know this is something every special needs parent has considered but this is rarely talked about, so I thought I’d bring it to light and hopefully start a discussion! I hope to hear what other parents think about this!
Very interesting, Marcella. I’ve been thinking about the time thing a lot lately. . . sometimes I feel like I spend half my life waiting for appointments to happen.
not even mentioning the emotional COSTS for all the therapies we decide to take a risk.I remember doing so much to try Hyperbaric chamber and I never could see results from that one. My anger towards hours of traditional therapies that sounded to me like play dates. Oh well, lets not be too judgmental or unfair (Ive been accumulating some trauma lately..). Like you said, Im happy for all that was done and if we wasted time it was a good lesson we learned!
Now, my guts are falling for the natural/alternative treatments. I feel like stoping all, or most of all OT,PT,Speech.Keep music and hypo and introduce the ayurvedic treatments, the frequencies of brilliance, the gtherapy…? I wish we could just go to Pune and dive in this new universe of the not totally trusted alternative therapies… the world is so encapsulated in the pharmaceutical and old school medicine sometimes…i wish we could treat ourselves and our special needs more holistic style.
How did you find Medek?
Were you living in the US and moved to Chile for the treatment?
ps – Nathan is so handsome and his smile is so contagious…he sounds like he really enjoys all that is going on, so, no mistakes there-keep up with the excellent work!!
It’s Marcela, Nathan’s mom from prayfornathan.org I was just found your comments and I’m so sorry that they didn’t get published on the blog earlier! I wanted to reply to you via email as you may not remember to check the posts for a response.
You are SOO right about the emotional costs they are huge, not just the ones where you take a risk but also the ones that you actually undertake! I just experienced that with the therapy we’re doing now, I got so excited and then my expectations get too high and then if something happens I get disappointed and it’s not a good cycle. I am still trying to learn how to manage expectations and most importantly to not have any – to do my best despite results – it’s a hard one!
I thought the same about traditional therapies, that they sounded like play dates, but I think all of them help our children, but sometimes they just need more than trad therapy can offer. I try to see evrerything as a lesson learned otherwise things would be too tough, it’d be too easy to go back and find faults and that would get too painful.
I love your idea of introducing more alt treatments! G, ayurvedic, brilliance – all sound amazing! G has helped Nathan a lot! The more I delve into the alternative world the more amazed I am by what I find.
We have been migrating away from old school medicine and towards alternative medicine and I have nothing but positive things to say as a result – I’ve had nothing but great results and 0 regret. I will use old school medicine when it’s necessary – I’ll treat infections with antibiotics and I give him an inhaler when he is wheezing – but generally I try to only use these things in emergencies!
I found Medek through a wonderful family who found my blog, contacted me, and said I was being foolish for not starting Medek right away. I listened and have been eternally grateful to them as they brought us to the best therapy available!
We live in Los Angeles but rented an apartment in Santiago Chile so Nathan can work with Ramon Cuevas, the founder of Medek. It’s been a fun adventure!
Thank you for kind words, I look forward to getting to know you better and especially to hearing ore about Noah and your angel Nathan!