"This is the best place for you to live. There is an amazing center here that works with autistic kids."
Encouraging words. No one could have known that these words were the last thing I wanted to hear.
It was 2004 and I was living in Sacramento. My 3-year-old son had just been diagnosed with autism. The MIND Institute at the University of California, Davis was hailed as one of the world's premiere autism research institutes. Everyone I met conveyed the same sentiment -- the MIND Institute could single-handedly heal my son.
Something else was going on in 2004; a war. We had not expected to move that year but the needs of the military changed those plans. Just as my son was diagnosed, we received orders to a military base located in an isolated and economically depressed area of Southeast California. My husband would deploy to Iraq a few months after our move. The MIND Institute would do nothing for us.
April is both the Month of the Military Child and Autism Awareness Month. This is nothing more than a coincidence, but I can't stop myself from connecting the dots. The success of our military often requires service members' families to sacrifice. The development of any child, but especially a special needs child, requires the support and focus of family. So when we balance the needs of the military with the needs of the child, who wins? Is service to country sacrificed for the child or does the child sacrifice as part of military service?
More than 23,000 military children have been diagnosed on the autism spectrum. And although I
highlight autism, the problems faced by these families are no different than the problems faced by thousands of other military families with a special needs child.
Military families face obstacles that impact the growth and development of an autistic child. Progress made is often lost with the stress of a move. New states mean new laws to learn and new school districts to navigate. With each move, services are identified and sought after, and these children are once again on the bottom of a long waiting list.
As I think back to the MIND Institute, moving early didn't really matter. My son's name would have been placed at the bottom of their waiting list and I would have already moved before we received "the call."
The challenges are known very well to Karen Driscoll, Associate Director for Federal Government Relations and Military Affairs at Autism Speaks. Karen is a Marine wife and mother of three children, one with autism. Her son was also diagnosed in California but a move to Virginia put them on the bottom of a ten-year waiting list for state services. This was the start of a long struggle to gain services, balancing the benefits of the fight with the amount of time actually spent at a single location. She estimates that they have personally paid $80,000 for services.
Why the large out-of-pocket expenses? Military families receive their medical benefits through Tricare, which is an entitlement, not insurance. Coverage for treatment, such as Applied Behavior Analysis (ABA), is capped at $3,000 per month. Laws eliminating dollar caps apply to insurance coverage, not entitlements. To date, 30 states have passed laws mandating the coverage of ABA. However, Tricare is a federal entitlement, and not subject to state laws.
Medicaid and other state run programs vary from state to state. Most states have long wait lists for services and as I already shared, that child will once again be placed at the bottom of the list. Delays and gaps in treatment are the norm for these children. Frustration is the norm for the parents.
The decision to not move, not change duty stations is usually not an option for service members.
And now let's talk about our wounded community. When a service member is wounded, everything is dropped, and the entire family's focus is shifted to their care. The recovery often takes years and the family now has a new decision to make. Most families move to the medical center, supporting the service member's recovery. What does the family of the autistic child do? Which is worse--moving and struggling with the changes or staying apart? Neither option is good for that child or the family.
"Our wounded service members receive exceptional care at our medical centers. However, the success of their rehabilitation depends on the support of the entire family. When a family member, such as a child, is not receiving the services they require, it impacts the family and that service member," Tina Atherall, LMSW, Hope For The Warriors®, Executive Vice President said.
Those who are medically retired due to their injuries face a larger roadblock. Once retired, the military family is entitled to no services for the treatment of autism. The result? Families that have made huge, personal sacrifices for our country, receive nothing to help their special needs child.
Access to the necessary services for the children of both active duty and retired service members is something that Driscoll and Autism Speaks is working to change.
"Military families shoulder tremendous responsibilities today. Military families with disabilities face even more extraordinary circumstances," Driscoll said. "Knowing the sacrifices military families make in service and protection of the rights and freedoms of this great nation, we as a country, have a moral obligation to care for them. And providing appropriate medical care and services is essential to family care. More must be done."