I remember sitting at my oldest healthy baby check up and looking at a form that asked if we were EFMP. I had zero clue what it stood for or that we would come to unfortunately understand what very little they do for family. EFMP is the Exceptional Family Member Program that is used across all branches of the military. Their primary goal is to help families that have children or spouses with special needs ranging from asthma to cancer and so many other things.
Our second born daughter was born with Angelman Syndrome. When she was about 16 months we were placed in the EFMP program. The EFMP program was supposed to place us at a new location that had everything she would need. We soon realized that while that may be their job it is most certainly NOT what they do. The first location they tried to send us to had a 9 month wait list for pediatric neurology. Insane wait lists for almost all therapies. We fought it. We provided all sorts of facts showing them this would not be helpful for her. We were stationed in Germany at the time and my husband had days left on his SOFA card when they gave us the assignment of Nellis in Las Vegas. We had no time to research; we were going. We assumed that because it was in Las Vegas there would be adequate care for her there. We would have abundant resources because it’s a huge city.
So wrong. We were so wrong. We came with high hopes that were quickly shattered. Laura was just under 2 when we got here. We started off on getting her into her therapies. Her last therapy center was using a harness to help her with body awareness and get over her gravity issues. There was not one therapy center in the city of Las Vegas that had harnesses for her weight. In my opinion Laura would be walking solo right now if she had harnesses available to her. Laura’s Occupational and Physical therapists both mentioned several times how she would be doing better if she had proper equipment and that Vegas was medically 20 years behind. We traveled to Utah for Genetic appointments, San Diego for Neurology care. The school system is rated worst in the country but EFMP doesn’t even look at school districts when moving these families. Schools are a vital part of helping kids who are enrolled in EFMP. Chances are if you have an IEP you are enrolled in the program. EFMP is supposed to vet these places and make sure kids don’t get lost in the shuffle like mine was. We have struggled so much here.
We applied for an EFMP move on the guidance of her developmental pediatrician. When we received the new assignment we were dismayed upon our research again. Long wait times for therapies. Wait times that ranged from 2 to 5 years for some kids. I called the EFMP office at the accepting base and asked if they even knew the wait list times. She told me that was not her job to know that, because it’s information privacy. Real quick side note… my mom just got her masters in information privacy… that’s not information privacy. That’s literally public information because I got in less than an hour. So now we’ve been accepted to a base that may not work again. So now we pray. We pray that our kid doesn’t get lost in the shuffle. We talk to other families and hope that they can give us positive feedback. And we raise HELL in hopes that someone will listen to EFMP families when we say the system is broken. IT. IS. BROKEN. It is absolutely the accepting bases EFMP office’s job to check wait-lists and make sure that children and adults can be taken care of. That is the entire purpose of their office. I can almost guarantee that no EFMP office is adequately doing their job for these families that give up everything, including quality health care for their loved ones.