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


A Time and a Place: Having the “Hard Conversation”

There is a time and a place for everything.

During the week, I keep telling friends and family, we have to be like the Germans.  Our trains MUST run on time.  As the family logistician, I have built into the weekly schedule allowances for last minute bathroom stops, extra moments to fill my ever-hungry land rover, and overall DC traffic gridlock.  In return, I expect service providers to meet their timelines as well.  To be truthful, I have demonstrated far more patience with these issues than I ever thought I would be capable.  Yesterday, that just didn’t happen.

Heading to Jack’s speech appointment yesterday presented its usual challenges.  He didn’t want to go.  He never wants to go, but we go anyway.  Discipline, Oprah once said (and I am paraphrasing), is the ability to go forward with a plan even when you don’t feel like doing it.  Discipline in adherence to our schedule is the backbone of our success.  We arrive at the speech therapy office, just a few miles from our house.  For once, I have found a provider which does not require me to battle interstate or beltway traffic.  Four stoplights and we arrive at our destination.

Recently, Jack has developed an aversion to elevators.  I follow him up the stairs, two flights, down the hall littered with doors, each one opening into another non-descript office where some need is being met.  For us, our door leads to the speech and occupational therapists delivering their services on the half hour.  Our current schedule only allows for one meeting a week, but I have convinced myself that an extra 30 minutes a week is better than nothing.  Besides, as an autism parent, I know that one goal is getting our children to generalize beyond what they encounter in their personal therapies.  Thus, working with more than therapist encourages the child to adjust to change, to experience transition, and to, overall, learn to generalize behaviors.

Once inside the waiting room, I see that we have hit our on-time mark (a coup for me. . . .being on time is not my forte).  Jack’s therapist is quietly talking to the other parent in the room, the woman’s son is intently playing with one of those wire toys.  You would recognize the toy instantly.  It has a maze of wires on which multi-colored square, triangle and round blocks have been placed.  The blocks move from one side of the toy to the other, following the path of the wires.  As we walk in, the boy doesn’t even raise his head.  His eyes are fixated on the blocks, moving them up, down, and around the maze.

Heather, our therapist, is talking to the other mom, but the room is small, so I can’t escape the conversation.  It is one that I have heard before.  Words like “red flags” “doesn’t make eye contact” “should be tested” drift through the air, each one heavy enough to be felt.  The other side of the conversation is harder to to discern, but I recognize the tone.  It is one of desperation as a mom anxiously argues back that these things are not consistent, it is just a speech problem.   The elephant in the room is being ignored:  autism.

I recognize this conversation because I had it frequently seven years ago.   This is called “the hard conversation.”  It is that moment when the service provider takes the giant leap to address what she already knows to be true:  telling a parent that the autism thief has stolen another child.  But she can’t tell her.  It isn’t her job, as the speech therapist, and her views are just that:  her views.  Her perspective.  For a moment, I am back at Fort Bragg, the setting is my living room and my two year old child sits playing with blocks.  My tone is the same as I hear now in this waiting room.  I don’t want it to be true.  I so completely want this therapist to be wrong, I want her to wrong, wrong, wrong.

Back in the waiting room, I am surprised by my reaction.  Instead of sympathy and empathy, I am furious.  Furious because this conversation is sucking up my child’s 30 minutes of therapy, angry that the mom is not listening to the therapist and overall, just livid.  Finally, the mom can’t take any more and she rushes from the room, the boy having not moved from his position in front of the toy for the last fifteen minutes, reluctantly following her like a duckling follows its mother.  For the first time in a very long time, I lay into a service provider.  But what I am saying is not what Iwant to say.  When I am angry, my voice becomes incredibly clipped, harsh and staccato-like.  It is this voice which I use with Heather.  Even though I want to leave, I send Jack back to the therapy room with a shaken Heather, only to follow him moments later when I hear one of his meltdowns begin.

Striding into the therapy room, I address Jack and his actions.  Get up, I tell him.  Sit in the chair, my voice still harsh and listen to Heather. I look at Heather who is crying quietly as she tries to focus on following through on Jack’s session.  Looking at her, I know that I have been the straw that broke the camel’s back for her today and I am deeply sorry.  Sorry that she is crying, even sorrier because I no longer have the capacity to cry.  I gently try to make amends by touching her arm and reassuring her that we will be fine.

Later, I admonish myself for being angry.  Always introspective, I want to know why was my reaction was so vehement.  And the answer is quite clear.  Like most people who fall into anger, I am not really angry with Heather, I am angry at something much less tangible:  autism.  Heather is just the proxy today for that anger.

My insight about this story from our journey is that there is a time, a place, and a person who has to have the hard conversation.  The minutes after a session for what seemed like simply an early speech problem is not the time.  A public waiting room is not the place.  And, unfortunately, the speech therapist is not the person.  On the other hand, if not then, there and by whom, how is this mother going to know?  Is there ever a good time to deliver this news?  Here is my perspective.

1.  What Heather sees is probably reality.  Even in the few minutes (ok, the fifteen minutes) that I watched this little boy, I could see the signs.  But, by having Heather make the observation, she immediately has backed the mother into a corner from which she will want to claw her way out.  In other words, as quietly and as politely has Heather suggested further testing, she might as well have had a sledge hammer and started pounding on the mother’s heart.

2.  Heather needed back-up.  She should not have attempted to have this conversation alone.  She needed to have another person, another set of eyes, perhaps, with her when she delivered the suggestion.  Even as she was telling the mom that only a developmental pediatrician could make a diagnosis, this woman was silently screaming “no, no, no!”  Having another person there to be the bad cop, as Heather was the good cop, would have helped.

3.  Before presenting this perspective, Heather should have had a plan for a recommendation.  That mother needed to walk out of the office with something more than fear gripping her heart.  She needed a coach.  Letting her leave without a safety net is guaranteed to add to her fears.

The bottom line is that Heather had seen the signs more than once.  She knew that she would have to have the conversation and she should have been better prepared.  Inviting the mom to a meeting with the senior therapist and Heather would have been a good start.  Earlier in the day is always better than a late afternoon delivery.  Armed with facts, resources and a road map is absolutely a better way to engage this parent.

Here are some insights from our journey:

a.  Rarely is the parent the one who recognizes the problem.  If you are the person put into the position of having to have “the hard conversation,” recognize that you are dropping a bomb on a parent who has not seen it coming (or didn’t want to see it coming).

b.  Explain how, essentially, the process works in today’s medical system.  Whether your insurance is TriCare, Medicaid, or Aetna (just as an example), you will not be able to directly make an appointment with a developmental pediatrician.  The intricate process of  getting to a developmental pediatrician is complicated and lengthy.  Expect that 1) it may take months to get the appointment and 2) stay on top of referrals, references, and appointments.  Tell the parent to not delay the process.  The sooner you have an actual diagnosis, the sooner the opportunities for interventions will open.

c.  Encourage the parent to start keeping a journal.  She should write about what she sees, what she feels.  As the parent, take pictures and add them to the journal.  By the time I realized that this would be helpful, I had an entire biography of Jack.  With just the pictures, I could even tell when the autism began to appear, even when I didn’t want to see it myself.  If possible, provide this documentation to the developmental pediatrician BEFORE your appointment.  This approach will help him or her give you the best levels of insight for what is to come, no matter what the diagnosis.

d.  Seek interventions, no matter how trivial they might first appear.  Find a developmental pre-school, keep up with speech or occupational therapy sessions, check out  Even if you later find that your child’s developmental delays are something other than autism, you will still find some nugget of gold that will help you in the future as your guide your child through his or her stepping stones.

Finally, give the parent permission to be angry.  But, remind them, as I have been reminded so many different times, don’t shoot the messenger.  The parent is going to need you.  As the parent, you can’t imagine it now, but the messenger has given you a gift.  He or she has cared enough about your child to want to reach out to you, as the parent, to do the right thing.  As the parent, remembering that will help you in the long run.

In future posts, autism will continue to be at the forefront.  Look for posts that deal with working with your providers, understanding when a service provider/consumer relationship is not working, better known as  “breaking up with your provider,”  creating a working relationship with the school.  I’ll also address issues such as playdates, providing for your neurotypical child, and maintaining your marriage through this situation.  Comments or questions are appreciated.  If you have a specific topic you would like to see addressed in this blog, please email me at, putting “blog comment/question/suggestion” in the subject line.

And, as always, find joy in your journey.

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