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.
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.
A little info about research and data analysis. . . .bear with me as my professor self emerges for a few seconds. . . .
The following information is courtesy of the Fort Meade, Md., Exceptional Family Member Program office. It’s about the Rights and Responsibilities of Parents of Children with Disabilities. Take a look at the public laws and make sure you are aware of your rights and responsibilities.
The purpose of the Council meeting is to review the military family programs which will be the focus for the Council for next year, and address selected concerns of military family organizations.
by Jeremy Hilton
Next Wednesday, June 20, at 1430 (in Room 232-A Senate Russell Bldg), the Senate Armed Services Subcommittee on Personnel will be holding a hearing on the issues impacting our military families affected by disabilities. I will be testifying along with four or five other witnesses. Here is the specific info on the hearing: http://
I suspect a large portion of the testimony and discussion will be referencing a potential Senator Gillibrand amendment regarding ABA and the recent OPM decision to include ABA as a medically necessary therapy for the dependents of federal workers. I intend to address that issue in my written testimony, along with other issues relevant to our community including special education, Tricare, Medicaid waivers, and the EFMP programs.
When it comes to helping our military families, you are critical. You know what is available around installations you are at or installations you have been to. You know where to find qualified doctors, labs, autism treatment specialists, grocers with organic or specialty foods for special diets, etc.
Did you know you that only you can make a difference for other military families by sharing this information? Read on.
The AMFAS Worlwide Installation Resource is our easy to use, full-featured way to provide any military family at any installation worldwide a way to add, search, rate and review support and services both on military installations and in the local area surrounding them. Any registered member can contribute.
CAMP FOSTER, Japan – According to the TRICARE operations manual, Chapter 20, Section 10, “Among the more than 1.2 million children of active-duty military personnel, approximately 8,500 carry one of the ASD diagnoses.”
Within the military community, it is estimated that there are at least 13,243 children and young adults diagnosed with ASD, or an average of 1 in every 88 people. With numbers like that, it is likely you will meet a military family affected by autism at some point in your lifetime.
By Elaine Sanchez
American Forces Press Service
WASHINGTON, March 7, 2012 – Military families with special-needs members would benefit from better communication and education, members of an exceptional family member panel concluded yesterday.
“We’re working some great programs up at the [office of the secretary of defense] level,” Charles E. Milam, principal director for military community and family policy, said in an interview following the panel here. “I think the key is how do we take that information and deliver down to the very lowest level.”
Twenty-eleven was a a successful year for AMFAS families in bringing awareness, support and information to our community.
We expanded in a multitude of avenues that no other autism support organization anywhere did, simply because we are 100-percent focused on support of our military families. That’s it.
by Nicholas Sabula
On Sept. 27 military family members representing all services, components and disabilities convened at the Department of Defense Education Activity headquarters in Arlington, Va. The purpose was straight-forward: to discuss issues and offer up solutions to the major overarching issues of the military’s special needs community.
It’s been several weeks now since the panel and I finally had a chance to sit down and share my experience. Following the event, American Forces Press Service put out an article and gave some good insight from my fellow panel members. You can read that article here.
As a member of the panel, I honestly didn’t know what to expect from this first effort by DoD’s Office of Special Needs to bring together the array of subject matter experts from a variety of special needs environments. What I did know was that I had a lot of information to offer the group. Thanks to your actions taking the survey on special needs and the comments, I took a great deal of autism-related (and other special needs) information into the day. To see the overall survey results I passed out that day, see our resource page.
Additionally, there were 2,138 written responses from over 260 survey respondents. I haven’t posted this information due to some privacy information that needs edited out, but will make an assessment sometime in the future on it. Needless to say people were a bit surprised that I introduced 100 printed pages of your feedback. My intent all along was to bring your concerns and ideas to the table.
Going in as a military family member representing more than just me was in many ways reminiscent of the reasons I started work on the AMFAS project in 2008. It’s about supporting each other and unselfishly making a difference for all of our families. And a reminder that together we can make a difference.
Looking over 6,000 feedback posts since July 1, 2009, when the American Military Families Autism Support Facebook page launched, I saw the stories of challenges, heartbreak, anger, resiliency, and ultimately victory by our families who had to take matters into their own hands, find new avenues for getting help for their kids and not give up.
I talked with dozens of families regarding their experiences with EFMP, base support, military medicine, moving, deployments, ECHO, etc. I also talked to several people who were true battle-hardened veterans in the fight, in this war on autism over the last decade. They are true inspirations to our cause and I took their voices, their experiences with me as well as yours.
What I’ve learned along the way is that there are many consistencies with our experiences and challenges. There are also many things DoD can do better, both from an efficiencies standpoint and a care standpoint. The leaders behind this panel knew this and were forthcoming on their focus to better understand and improve the areas needing attention.
The format was such that after covering successes, the panel wasted little time in getting to the heart of the matter: challenges with EFMP. As one of many at the table, I listened intently to others as they raised concerns and elaborated on their personal experiences of lack of services or policies that were inconsistent. What’s important here is that transparency was a big part of the process. More important is that the day was really about solutions, understanding and collaboration.
Some of the realities of change are that overall policies take substantial time and effort to take place, our budgetary environment makes it difficult to advocate for additional support resources and each service controls their respective support services. Talking with both panel members and coordinators of the event, I did get the consistent impression that everyone present wanted to make a difference and learn from the breadth of feedback that was shared during the day.
Challenges then transitioned to solutions and ultimately the day ended with a number of recommendations, such as consistency of services at each installation, taking the best aspects of each service and applying them universally, streamlining PCS move processes, improving respite care, access to providers and a number of other items. ECHO was also a big topic. Basically, all things that have been hot button items for our community were discussed during the day.
Many of the challenges of yours I communicated were bolstered by my own experiences on this ASD path. For those of you who experienced the challenges of PCS moves, I was able to reference my family’s experience of four moves in five years and detailed issues with the assignment coordination process that I experienced.
Of particular interest to me was providing our families access to military attorneys supporting special education law, something the Marine Corps currently has. As a parent who has fought our son’s school administrators over the last year on a simple food heating issue with his special diet and had to visit an attorney to understand my rights, I relayed the story of another military family who had built up approximately $200,000 in legal fees trying to get special education services for their child.
As members of the AMFAS community, the work you have done to support our military autism community actually received praise from DoD leadership and was highlighted as a success at the end of the day. It was unexpected, but re-enforced the original intent of AMFAS in trying to work from a grassroots level, to provide support and information for all our military families without regard to special interest fundraising and work within the system to help both our families and our care providers to better understand and support our special needs.
Another panel is scheduled for March and although I’m unsure if I’ll have the opportunity to participate again, I can say it was an honor to get to carry your messages.