Data, Data Everywhere. . . There’s More to the Story Than You Think


I’m back.

It’s been awhile.  Ok, it has been a very long time, but I have been really, really busy.  Now, I am back and writing with force.  There is quite a bit to say and the first topic on the list is the Department of Defense’s Exceptional Family Member Program (aka EFMP).  My dog recently got out of the fight, but over the course of the last year, a number of issues and pieces of information have come to light and maybe it is just time to share them with other EFMP families.

Last fall, I had the good fortune to work with a good deal of really rich qualitative data focused on DoD families and their exceptional family members.

The Research

A little info about research and data analysis. . . .bear with me as my professor self emerges for a few seconds. . . .

Data can be qualitative or quantitative.  Responses can be elicited, evoked, provoked, prompted.  People who give their responses can be respondents or subjects, depending on the type of study being conducted.  Subjects are participants in controlled experiments, any other types of studies, such as ones that would measure attitudes, beliefs, feelings or attempt to describe behaviors, would involve respondents.  Respondents are those who are asked to answer questionnaires where the options are limited, possibly scaled (as in “strongly disagree” to “strongly agree”) and no opportunity is offered for additional comments.  Their answers are “prompted” and the data being collected are “quantitative” data.  The researcher is absent, often in a double-blind scenario, which means that neither the researcher sees the person filling out the questionnaire nor does the respondent ever see the researcher.  Traits, behaviors, attitudes, beliefs, all measured appropriately and collected as quantitative data can then be analyzed using statistical methods, allowing the researcher to draw conclusions, make recommendations leading to desired changes being implemented.

Qualitative data, while collected with vastly different methods, is equally exciting and can allow the researcher to gain deep insights into complex issues, even if the analytical methods lead to more tentative conclusions.  Instead of questionnaires, respondents can be observed, interviewed, engaged in discussion.  The researcher can be a part of the process or removed from it.  In the case of the EFMP data, the data collected was qualitative, using open-ended questions, a common method designed to gain access to respondents’ feelings, experiences, concerns,  or beliefs.  When a research analyst calls such data “rich,” she is suggesting that the data is filled with patterns of thought, new insights, words and phrases that bring to life the stories the respondents have to tell.  The job of the researcher is to apply an analytical technique called content analysis.  For the layperson, content analysis is an intensive process of reading each word of every response from each respondent multiple times, by multiple readers, identifying recurring themes, and determining the weight of those themes (how often they appear).  Ultimately, the goal is to take thousands of what appear to be unrelated responses to a finite set of questions, find some pattern in them that links them to each other.  Place these themes and patterns within a much larger context where their meaning can then be used to clarify the complexity and offer recommendations for improvement.

Further questions on both method and analysis can be sent to me at

The Data

For weeks, I culled through the data, reading through it over and over and, when the time came, commencing the gritty task of actually analyzing the data.

The task consumed me.  Sleep eluded me.  I forgot to eat.  All I could think about was the data.  The words of the families came to life, I could hear their voices, see their images and, all too often, felt their pain and struggles.

At one time in my life, we were an EFMP family.  It was difficult.  Five posts in eight years, all east of Interstate 81, allowed me plenty of time to get to know EFMP rules, regulations, policies and failures.  Jack was diagnosed at Fort Bragg in 2003 with autism, we left the Army recently out of Fort Myer EFMP.  Fort Bragg to Fort Drum to Carlisle Barracks to Fort Bragg to Fort Myer. . . .I look back at them now and remember each and every EFMP person.  Fort Bragg was the best the second time around (they still get my award for BEST EVER EVER EVER!). . . .Fort Drum. . .worst ever. . . Fort Myer. . . .first joint base. . . .Carlisle Barracks. . . .so small, made life so easy.  But, if I look at each one of them, we were at different points in our lives, too, and now, that is part of the story.  And, as I examined the data and began the process of placing it into context, I could see why those labels were so easy to assign.

In other words, as I performed the analysis, I could clearly see the multidimensionality of both sides of the EFMP problem is what makes it a nearly insurmountable challenge for DoD, for EFMP families and providers.

Services and the Exceptional Family Member Program

EFMP, believe it or not, is a service offered to all service members by the Department of Defense.  Being enrolled in EFMP is a bit like buying insurance. . . .turns out you might need it, but if you have to use it, the news is probably not good for you.  And that last part is what makes it an “undesirable” service for so many service members.  For a very long time, service members lived with the perception that enrolling a family member into the Exceptional Family Member Program meant that their military career was in jeopardy.  Given that an EFMP designation could possibly impact future assignments, PCS moves or promotions, service members viewed enrollment warily.  Unfortunately, if you or your child needed to be enrolled in order to receive necessary behavioral, educational or medical services, EFMP was a “mandated” option.

As a service, though, wanted or not, there are some principles in play that cannot be ignored.  First, services are intangible, inseparable, heterogeneous, and perishable.  In the world of EFMP, here is what those principles mean.

When you engage with anyone from EFMP, what do you get? And, when I ask you, “what do you get?” I mean, physically, what do you get?

1.  Paperwork:  lots and lots of paperwork.  Do you understand it?  Is it easy to read?  Do you know what to do with it?  Were directions provided?  Pictures?

2.  When you go to their office, is there a place to sit down?  If my experience with EFMP (or any agency on a military post or base, for that matter) is any indication, the chairs are uncomfortable, unmovable (as if I would even consider taking them with me), the coffee is cold, old and tasteless (if there at all), brochures offer little to no meaning, and the television is tuned to some channel with a sign indicating that the channel is not to be touched without assistance.  Am I close?

Intangibility is inevitable with services:  it exists along a continuum from absolutely no physicality present to physical goods accompanied by some level of service (simplest example is dinner at a restaurant: food with service attached).  But without a physical product, or some indication of it, how can you evaluate how well it is working?  What does this have to do with comfortable chairs, paperwork and ambience?  More than you would think.  People need physical contact with even the most intangible services.  Why do you think so many businesses give out pens, calendars, crazy stress balls with the names of their businesses stamped on them?  Tangibility.  I’m not suggesting that pens and calendars are the path to connecting with EFMP (although, stress relief balls may work), but there are many ways in which the first contact with the program can be more comfortable, welcoming, warm.  Because, chances are, if you are there, your life is already tough enough.  Tangibility becomes especially important because it is impossible to know if an intangible service is working.  But when it fails to work, you know it and you are mad.

Inseparability is the source of much that can go wrong with any service and EFMP is no different.  Unlike the IPhone I purchased this past weekend, with a service I am actually present in the production of the service.  Watching Jack and Ellie getting their hair cut this past weekend, I had to participate (as did they) by suggesting to the stylist how much should be cut.  In the case of Jack, I had to quickly train the stylist how to deal with an autistic boy who hates to have his hair cut.  I also had to teach my children how to engage with the stylist:  sit still, don’t argue over hair length (that would be Ellie), let her know if the water it too hot or too cold.

With EFMP, you are also part of the service production while simultaneously consuming the service.  How many times have you moved to a new post, arrived at EFMP to reset your respite care and found that you didn’t have the correct information, had somehow lost a referral or were told that you had zero chance of receiving ABA services in the next thirty days?  Retracing your steps, you remember that you did everything the same way you had at your previous post.  You knew the routine and had followed the blue print.  Still, you had come up empty-handed.

If this has happened to you, you can partially blame the service failure on the inseparability principle.  In order to arrive at a satisfactory solution encounter, both parties must participate equally in the production and the consumption of the service.  Lack of knowledge about how to participate sets the family up for failure.  One of the key themes from the data dealt with this problem.  Not only was there no consistency in the application of the EFMP policies across the Air Force, Army, Marines, Navy, Coast Guard, active duty, guard and reserve units, but there was a clear lack of consistency between posts and bases, making things like PCSing a nightmare that seemed to have no end.

Heterogeneity is the third principle that comes into play when we look at the challenges we face with EFMP.  Anyone who has been touched by the military has argued against the “cookie cutter” approach so often taken by any type of programming available for families.  Even within the same offices, families enrolled in the problem often find it is difficult to get the same answer from more than two people twice.  Consistently, the heterogeneity of the EFMP employees, across services, posts/bases, and even within offices, showed through the data enough to suggest that most encounters were not only difficult, but acted in such a way as to create negative expectations for any future encounters.  Creating negative expectations had a profound effect on the interactions between families and service providers, often leading to a downward spiral where any possibility of service salvage went out the door.

Finally, all services are perishable.  They have zero shelf life.  Can’t use them today?  They can’t be saved until tomorrow.

At first look, the perishability of services seems less impactful on the entire EFMP program than the other principles.  Yet, the size of the enrollment at the larger posts (Bragg, Hood, Lewis, Schofield Barracks, Military District of Washington, all Army, but it’s my perspective. . . .happy to take insight about other services, see email address above) all mean that you have volumes of people needing access to a very finite number of EFMP employees.  Many types of service industries have ways to manage the perishability factor.  Airlines use yield management pricing:  fly off-peak hours, typically, fly cheaper.  Plan your flights far in advance, airfares are lower.  In other words, airlines can motivate you to commit to filling their seats by altering price, something they have determined to be important in your decision-making process.

But what about EFMP?  What control do they have over managing your demand for the finite number of hours they can provide?  Think about it this way:  when is EFMP busiest?  During PCS season.  When, typically, do most families PCS?  Spring, summer. . . .maybe early fall. . .sometimes over the holidays.  Is there anything EFMP can do to increase the hours of the day that they work?  No, but they could increase their man hours per day by having more of their employees focused on PCS types of activities or asking for their higher headquarters to staff them more heavily during those seasons.

What happens when you go to the EFMP office?  Your first signal is to “sign in.”  From my experience, I would rather have my eyes ripped out of my head than try to sit with my son waiting for ANY length of time for a meeting.  Could I possibly avoid this situation?  Sure, as part of the service production, I could leave him home. . .but, wait. . .I am new to the post, I know no one to watch my special needs child, my husband has already signed in to his unit and is already working and, oh yea, the whole reason I am AT the EFMP office is to set up respite care.  Is there any solution to this problem?  There is, but it takes an out of the box approach and the first step is acknowledging that perishability is the elephant in the room and how are you going to work around that.

In the end, the longer I wait, the more frustrated I become, the more likely my child will act out, the shorter my fuse.  Equate that with my counterpart with whom I am going to be meeting once I finally reach the hallowed halls of the EFMP office.  I am probably the fifth or sixth person to show up in the office today.  Chances are that I am missing at least one piece of my paperwork, not because I intended to do so, but I didn’t need it at my last post, so it never occurred to me that I would need it at this post.  The closer to lunch, give or take an hour, the EFMP rep is going to either be starving and I am the person standing between her and lunch or she has just come back and the phone call she received over lunch from the school where her OWN child attends has told her that her evening is going to be spent doing something other than taking care of herself.  She is in no mood to be berated, you are in no mood to be told “no” and, before you know it, what could have been a fairly good start to a working relationship has become a throw down with names and ranks being dropped everywhere in sight.  She has heard it before.  You have said it before.  You threaten to go to the chain of command.  She is already thinking about the phone call she is going to get from someone tomorrow.

After reading thousands of responses, I can readily tell you, this is how it starts.

I can also tell you that it doesn’t have to end that way.

The data I analyzed exposed many themes about the EFMP equation:  families, providers, leadership, challenges, outcomes.  Thanks to this data, I have a story to tell.  Thanks to twenty plus years of studying, researching and  teaching Marketing and Services at top universities across the United States, I have context in which to place this data that offers perspective and recommendations for a way to approach some of these challenges.  With my partners, a five-stage study program has been developed. . . . if the leadership is willing to listen.  They’ve been told.  This information and these recommendations were presented in December 2012 to military leadership in Washington, DC, so they have been told.  Whether they choose to listen is the question.

In the end, though, here is what came out. . . .after reading thousands of responses from over 500 respondents who came from all ranks (full disclosure:  no respondents in the study indicated that they held a rank of O7 or above), all services, posts and bases across the country, with different reasons for being enrolled in EFMP. . . who were Active Duty, Reservists, National Guard, retirees, caregivers, spouses, Service Members, or enrollees themselves, here is one general theme that emerged over and over and OVER again:

EFMP demonstrates no consistency across services, across posts/bases, across states, communities and ranks.  The vocabulary used to describe exceptional family members changes across the different services, the accessibility to programs are a function of the environment outside the control of the Department of Defense.  Reworking EFMP is going to need more than a change of resourcing, it is going to need a significant paradigm shift.  Until then, nothing can really change at all.

©LeslieKDrinkwine,Ph.D., 2013. All material by Leslie K. Drinkwine, Ph.D., and subsequent studies published under Education Research Consultants, LLC is the copyrighted property of the author.  Ideas presented in this material are the intellectual property of the author and are protected under federal laws of the United States of America.  Any use of this material must have the expressed written consent of the author.  The author can be contacted at


LoJack That Kid!

There is a missing child.  Fortunately, it is not mine.

This morning, flying through the usual routine of baths, picking up the multiple piles of stuff left by others the night before and, all in all, pretending to be an organized stay-at-home mom, I caught the tail end of a newscast about a missing child.  While I can’t even contemplate the fear that a parent would feel in that situation, my heart stopped when the newscaster described the child as autistic.  At that exact moment, Jack decided to test the strength and length of the everpresent umbilical cord.  Being pulled from the TV at breakneck speed, whatever was being said about the missing child was lost among the noise of my house at that time of day.

Every parent worries about a lost child.  Talking with so many of my friends, we marvel at what hovering, helicopter parents we are.  While our parents tell tales of walking three miles to school in the snow up hills in both directions, we reminisce about the freedoms we experienced as children.  We rode our bikes to school, walked home together, stayed in the car while our parents went into the stores.  Later, we would be entrusted with our parents’ cars, driving up and down the main drags that wove their way through our small towns.  Be home by 10, 11, or later, our parents did not have to worry about where we were, what predators we might encounter.  In most cases, they just worried that we would try really bad wine like Boone’s Farm or pot.  Snipe-hunting was a favorite prank.  We were the original latch-key kids, home watching AfterSchool specials.  Our parents did not connect with us by text or phone, they simply told us when to come home for dinner and that was enough.

So much has changed.

Just a few years ago, one of my friends gave her 9 year old daughter a cell phone.  It had the capability to call three numbers:  home, mom and older sister who was in college.  Elle has already begun to ask when she can have a cell phone.  When I am out with friends, she uses her father’s phone to text me and tell me it it “time to come home NOW!”  It is this environment in which we are raising our children.

For the parents of autistic children, this fear is exponential.  I used to joke with my mother that my children were a great deal like the child in The Ransom of Red Chief, the short story by O. Henry.  Like the main character in the book, I was sure that anyone who might abduct my children would return them in a very big hurry after they experienced a few hours with them.  Even 30 minutes of Elle-speak can send you diving for your favorite bottle of vodka.  The perpetrator would probably return Jack even faster when he/she discovered that Jack has bad aim in the toilet, he requires all TVs to be tuned to the Disney channel and his unending demand that it is “my turn” on the computer would change their minds pretty fast.  Yes, they would be back on my doorstep in short order.

But, unlike O. Henry’s story, abductions are not necessarily about money, but more about darker, sinister intentions.  We replay the stories of Jaycee Dugard and Elizabeth Smart in our heads and those are the stories with the happy endings. . . ..

Aside from the obvious concerns about an abduction, I also worry about Jack getting lost.  He meanders, walks off and sometimes just takes off at high speed.  A neurotypical child would know to ask for help, be able to describe his or her mother, remember his name, phone number, and address.  He could tell an adult what his mother was wearing, what she looked like, where he last saw her.  Elle could do that.  Most children would do that. 

But Jack is not most children.  He is that one in 110 for whom verbal ability is limited or entirely missing.  Ask him his name, you might get him to tell you “Jack,” but even that is a shot in the dark.  We’ve worked on learning our phone number, our address, mommy’s name.  B once wished, out loud, that we could just LoJack him, like our car or microchip him like a puppy.  He won’t wear a medical bracelet.  I discussed this with one of his former therapists.  We were discussing what would we could do to ensure that we were reunited, should he ever get lost.  “Does he knows what it means to be lost?”  Good question.

Even before I knew about today’s missing child, this issue, always present, played out for me yesterday.  In a frequent trip to Lowes (I try to go to several different ones so that my addiction to do-it-yourself home renovations tasks is not detected, thus, forcing some type of intervention), yesterday, Jack was in rare form.  His normal Tuesday routine had been disrupted by his BCBA becoming a grandmother for the first.  Most people do not adapt well to changes in their routines.  Jack REALLY does not adapt well to changes in his.  But he is usually pretty good under certain conditions.  First, I tug on the umbilical cord to show him that it is still attached to my waist, then I let it slip that Elle will be elsewhere and finally, and this is the most important, I let him know that we will making only one stop.  No matter what anyone says, lack of verbal expression notwithstanding, Jack understands each and every word.

The trip to Lowes was quick and Jack, enamored in the back seat with a new book, barely showed any interest.  Once inside the store, though, all bets were off.  Whether it was the extensive array of Christmas trees or the wide open aisles, something snapped in Jack.  “My turn,” he insisted as he removed my hands from the cart’s steering mechanism.  Ok, I breath in deeply, pushing the cart will be his reinforcer for this trip.  But Jack has other plans.  Instead of walking next to me as I know that he can, he takes off at speeds that rival anything on the NASCAR circuit, yelling at the top of lungs:  “Fast!!!!!”

Now, I am used to this behavior, but I am, apparently, the only one.  A child running amuk through the thoroughfares of Lowes is not always appreciated.  Thinking that today would have been a great day to wear my favorite t-shirt (“Parenting advice not appreciated unless you too have a child with autism”), I try to use my “calm” voice to entice him back to me.  Laughing as if he were the Joker to my Batman, he disappears around a corner.

There are two facts that you must know before reading on.  One:  I am old and my clothing size has grown to two digits, limiting my agility and speed.  Two:  I wear Danskos. . .comfortable, if not stylish, footwear.  When I could still wear those items of clothing that only required a single digit, the Danskos looked cool and funky at the end of my skinny legs.  Today, I like Danskos because they are sturdy and seem to be able to support my body.  At least that is what I tell B.  He feels they are the reason that I am constantly tripping and falling.  What he fails to realize is that I am just a klutz.

But. . . .Danskos are not made for chasing children.  Neither is my age a good attribute to have when chasing a moving child.  Despite his pharmaceutically-inspired girth, Jack can move like lightening.  Learning years ago at Fort Bragg that Jack would only continue running if I ran after him, I take this retrieval process somewhat slowly.  Well, slow is not going to work today.  Today, Jack is going to demonstrate his unusual ability to make people believe that a murder is taking place right there in their presence.  I’m not sure when he attended Primal Scream Therapy, but that is his new skill.  Not getting what he wants, he screams.  Actually, the word “scream” does not begin to describe the noise that seems to emit from the very bowels of his body.  It is such a blood curdling, back-0f-the-neck-hair-raising, spine tingling scream that you are absolutely certain that some crime is occurring.  It is the kind of scream you would want your child to make if he or she were being abducted by a stranger.

But there is no stranger. There is no predator.  There is just me and, when I finally reach him, he takes one look at me, screams again and streaks down the paint aisle.  He’s left the cart where my keys and wallet are hanging on for dear life.  In my multi-tasking way, I grab the cart and try to follow him.  Twisting at just the wrong moment, Danskos plotting against me, I fall, head first, in the middle of the mid-store thoroughfare of Lowes in Chantilly.  Let’s just say that women who have given birth after the age of 40, should alert all bodily systems that a crash is coming.  Well, they should.  Seconds count in these moments.  My alarm system does not work at the moment.  Embarrassingly crumbled on the industrial floor of Lowes, I hear Jack’s gentle admonition to “be careful.”

It would be easy to say that we reconciled and he behaved the rest of the visit.  We did, but he didn’t.  The screaming continued until we were safely in the car.  This time, I was lucky.  He ran, but he came back.

This morning, I hear about a missing autistic child and there is a cold feeling in the middle of my body.  It is tough enough to raise children these days, but the autism thief always seems to add an extra degree of difficulty.  I make myself promise to make a special effort to be sure of Jack’s whereabouts this afternoon. . .. even if it is just putting up with the primal screams.

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