Military families with autistic children face uprooting, isolation, and continuous loss of services
#AuthenticAwareness includes knowing the additional challenges faced by military families living with severe autism
By Jennifer Penhale
A large number of families within the active duty military population have children with autism. Some of these families will move every few years and with that comes a whole host of challenges. We are an active duty Air Force family with three children on the autism spectrum (our twin teenage daughters being on the severe end). We move every few years, sometimes more than once a year, and at 16 years of active duty service, we have now moved seven times to six different states with one more military move left to go.
Every time an active duty military family with autism moves, that family is effectively starting at square one in finding new providers and launching a new IEP process. These families often face extensive wait lists and the majority of the duty locations are already saturated with similar families making it that much more difficult to secure needed services.
Add to that the “available” providers making the decision to exit the military insurance network leaving a very small pool of medical and therapy providers to go around. In addition to the stress of scrambling for services, these families find themselves with no built-in support, no friends and family. IEPs from previous states are often not recognized and honored, and the level of special education support and resources can be dramatically different. For children with severe autism, there are no real alternatives to the public school system. Charter and private schools, even private autism schools and homeschool co-ops, can refuse to enroll students with severe autism.
My daughters were denied acceptance to five private autism schools in Florida based on the fact that they needed 1:1 assistance and were an elopement risk. My youngest son with mild autism was accepted without question. For many of us, homeschooling has become our only option in order to ensure their safety and well being and a chance at academic success. I have had to homeschool for the last five years due to the unwillingness of four school districts in three different states to comply with federal law and provide a free and appropriate education to my daughters.
We do not have the financial means to file due process, hire a good lawyer, and hope for the best. Some of us have been in a battle against some of the largest school districts in the United States. I personally battled against the 8th and 11th largest school districts in the nation; in Florida and Virginia. I knew full well that I could not successfully take on such a large entity without an arsenal of lawyers and funding. Our family, like most military families, would be moving before any resolution would possibly be reached. School districts know that and simply play “wait us out.”
The argument can be made that military life and autism don’t mix. But these families are also some of the most resilient you will encounter. They deploy and take on additional duties all the same. After living all over the country, we have met other families who are also dealing with challenges and hardships severe autism brings, compounded by the continuous uprooting. The isolation and loneliness can be overwhelming.
We military families have been advocating for more awareness, and better funding and accountability on the part of the Department of Defense. We fight for Medicaid portability among other things important not just those who have severe autism, but for all who have developmental and medical needs.
My story is sadly the norm. We just wake up each morning and pray that we have the physical, emotional, and mental strength to just make it through the day… the evening… into the overnight hours, and to the sunrise of the next morning. But we must advocate to members of Congress for the needs of our children. Those who serve in the military should not feel that they must hang up their uniform because their children have severe autism.
Jennifer Penhale, MPA, is the mother of three children with autism.Read Full Article