LIBERTY, JUSTICE AND HEALTHCARE FOR ALL

By Angela Warner 

I am trying to wrap my brain around what it would be like for every child in America to  have healthcare coverage. In particular, I am trying to wrap my brain around what it would be like for every child with an autism spectrum disorders and other cognitive developmental delays to have adequate healthcare coverage, and access to effective treatments and interventions, guided by practitioners experienced with treating and recovering children our children. It is hard for me to think about because we all have been at battle for so long for our children. But I think I may see the light at the end of the tunnel, and that light is from the most unlikely place.

Almost two and a half years ago Tricare (military healthcare insurance) implemented a program called the Extended Care Health Option (ECHO). While the ECHO Program looked good on paper to those who wrote it, and those who passed it into law; it has created a nightmare and continued false hopes for military families who have children with autism spectrum disorders and other cognitive developmental delays. Our family knows, and we are just one of thousands of military families who know first hand.

Failures of the Tricare ECHO Program have affected the readiness of our military, and negatively and severely impacted the continuity of care for our children across duty stations. Active duty military families typically move every two to four years. As I say that, I ask you to sit back for a moment and reflect. If you are the parent of a child with a disability, think about where you are on your state’s Medicaid Waiver list. Think about where you are with your child’s school. How long did it take to iron that all out? How long did it take to find the “right” doctor for your child? And then think about having to do all those things over again in another two years. I am certainly not complaining. We signed up for this. We signed up to serve our country. We (and when I say we, I know in my heart I am speaking for every honorable family in the military) don’t expect anything that the rest of the world doesn’t expect for their children, and that is simply to have our child who has autism, have good and effective treatment access.

Beginning immediately after the ECHO Program was implemented, there have been many wonderful, brave and tireless military members and spouses who have advocated for change to this program. Those changes are happening right now. Tricare is a federal program covering intervention for children with autism. What I have been able to wrap my brain around is that once the ECHO Program policy guidelines once re-written with the language of medical benefits versus special education benefits, and the benefits are obtainable; this will open the door for individual state legislation and potentially more federal legislation to “take care of our kids” NOW instead of ten, twenty, thirty years or more from now when our children are adults and incapable of living and functioning independently in society.

There are many challenges that need to be addressed. For over two years Tricare leadership has known about the negative impact current ECHO Program policies have had on continuity of care, and access to treatment. Tricare leadership failed to act. The Marine Corps and Army have strongly endorsed the family recommended changes to the ECHO Program. They are leading the way! Thank you Marine Corps and Army Senior Leaders for recognizing the reasons and need for change and following through to “make it so”.

Always one to call a spade, a spade I ask; Where is Air Force leadership? Where is Navy leadership? The Air Force (our branch), and the Navy senior medical officers need to take a leadership role, take action, and make the same strong endorsements!

“A true leader has the confidence to stand alone, the courage to make tough decisions, and the compassion to listen to the needs of others. He does not set out to be a leader, but becomes one by the equality of his actions and the integrity of his intent.”
General Douglas McArthur

Despite family’s urgent cries for help, Tricare failed to act. 90 to 95% of our children have been without any effective intervention services for over two years. We are all aware of the potential gains a child can achieve over a two year period. These opportunities are lost. Our families are in crisis, and we deserve a response.

The situation that happened at Walter Reed comes to mind… There were many “leaders” at Walter Reed, who for a long time, failed to listen, failed to take a leadership role, and failed to take action.

Our government has an ethical and moral obligation to provide healthcare for our most vulnerable population and our most valuable asset; our children, civilian and military alike, and regardless of income. When it comes to our children with all disabilities including autism spectrum disorders; that obligation is magnified. Our government also has an ethical and moral obligation, particularly regarding these disorders, to provide coverage for interventions and bio-medical treatments that are demonstrating consistent benefits and recovering our children. What our government needs to understand and embrace wholly is that if our children are not helped now, this epidemic will, in the not too distant future, bankrupt our states and government instead of individual families.

The number of children diagnosed with autism spectrum disorders continues to grow. A report recently released and authored by Raymond Gallup and Dr. Ed Yazbak and published in October 2007, puts the number of children with autism at 1 in 67 using Department of Education data. Military data is still being analyzed, but the numbers I’ve been given at this point are validating the report by Ray and Dr. Yazbak. These numbers are too significant to ignore. Robust response and action is needed NOW!

Major General Elder Granger is the Deputy Director of Tricare Management Activity. He has made a blog statement regarding this issue and is looking for comments. I know he is reading every single one. I would encourage anyone (civilian or military) to write in and ask MG Granger to strongly support the military family recommendations, and to do so in an expedited manner. Previously there has been a character/word limit on the comments. If you try to post and it doesn’t get on, or your post is lengthy, you may email it directly to: webmaster@deploymenthealth.osd.mil

I see an open door, and I see a light at the end of the tunnel!

Angela Warner is the mother of four beautiful children (two with an ASD),  a wife and military spouse (there is a difference). “I’ve had The Beatles, 'With a Little Help From My Friends' playing in my head all week. I could not have written this without the never ending inspiration and support I receive from the advocacy community. Now go pull out your Sgt. Pepper’s CD. :)” - Ang