Friday, November 22, 2013
Monday, September 2, 2013
Monday, August 26, 2013
Sunday, July 21, 2013
Friday, July 19, 2013
Photo Credit: AMFAS
After years of following advocacy efforts for better services for military families who have children with autism and trying to help out wherever I could, I find out today that new regulations will go into effect on July 25 that are a sad, cannibalized version of what advocates had been asking for and what these children need. I can’t even tell you how disappointing it is that despite all our congresspeople’s public statements about how much they support our military and military families, that the program that we end up with, that they pass as law, doesn’t come close to what the needs are. So, with some help from AMFAS (American Military Families Autism Support), I sat down and wrote the following letter to my representative, Bill Flores:
I am writing to you today to ask for your help with TRICARE's new policy regarding ABA therapy for children with autism. I have to say, as the mother of a child with autism myself, I am horrified that so many barriers have been put in the way of our soldiers being able to obtain quality care for their own children. So many people claim that they "support our troops," so there should be no problem obtaining state of the art healthcare for military families. Sadly, this is not the case here.
The number of children with autism has reached epidemic rates. 1 in 50 children has some type of autism spectrum disorder. There is a mountain of research showing that ABA is the best intervention for autism. ABA has, according to June 2012 Senate Armed Services Committee testimony from the American Academy of Pediatrics associate executive director,
"proved effective in addressing the core symptoms of autism as well as developing skills and improving and enhancing functioning in numerous areas that affect the health and well-being of people with ASD. The effectiveness of ABA-based interventions in ASDs has been well documented through a long history of research in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial gains in cognition, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups."
These men and women who fight for us, who defend our right to be free, should not have to worry whether their children are receiving appropriate or adequate therapy. They should KNOW that the American people and its government stand behind them and are willing to provide them with the best possible healthcare for their children. They should KNOW that if they get wounded, we will take care of not only them, physically and mentally, but that we will continue to provide care for their children with disabilities. They should KNOW that if they are forced into medical retirement, that we are grateful for their service and will show that gratitude by continuing their child’s therapy. If we all support the military as we claim to, this should not even be a question.
In 2012 and 2013, many advocacy organizations, military families, and their friends and loved ones advocated and lobbied Congress for better ABA treatment for military kids. Unfortunately, what has come of those efforts does not reflect what the needs are that these kids have. TRICARE’s new ABA policy is far too restrictive and includes testing requirements that are outside the scope of what is considered best practices in ABA. Again, ABA is based firmly in scientific research. There are firm guidelines on how to best implement it, as well as how to ensure that it is working for each individual child. The restrictions in TRICARE’s policy are not at all based on those well-established guidelines. It makes no sense to implement a program to provide ABA therapy and not use research-based practices to establish efficacy of that therapy.
I am asking for your help on the following items:
1) preventing the implementation of this new policy, set for July 25, 2013.
2) to support the inclusion of equivalent language contained in the Larson Amendment in the Senate version of the NDAA.
3) work with the House and Senate Armed Services Committees to hold additional hearings on this issue to ensure Congressional intent is translated into appropriate regulations by TRICARE and DOD.
I believe we are better than this, that military families deserve better than this, and that it is unconscionable to implement regulations on the healthcare of military families that only add barriers, rather than ensuring proper care. I hope you will consider adding your support to this issue to prevent that from happening.
Thank you for your time.
Please consider supporting these efforts by writing your own letter of support to your representative in Congress. If you would like more information, AMFAS has many articles on their site explaining exactly what the issues are. There is also a FAQ and a discussion forum. I hope every American takes the healthcare of our military families seriously and is willing to put their money where their mouth is by supporting better care for military children.
Saturday, December 15, 2012
It's a really sucky day to be a parent of a child that struggles with mental health. Connor's issues are not as severe as some, but we are doing everything we possibly can to help him through it. He struggles with anxiety and OCD tendencies, currently. This has been going on since he was about six or seven. I decided it was time to pursue treatment when he was unable to get from point A to point B without performing some kind of ritual and when I realized I hadn't seen the kid laugh or smile in about a month. You can say what you want and think that that's too young to make that sort of decision. But once we started treatment, I got my kid back - seeing him smile and laugh again was worth it. Seeing him finally relax made me realize how much tension he had been carrying around with him for months. And now I'm that much more in tune with being able to spot that tension coming back so we can try to prevent it from ever being that severe again.
We've worked with various doctors to figure out the best treatment for these things and to ensure that his quality of life is as good as possible. It's a balancing act, and it's made tougher, I think, because as a growing child, his body is constantly changing. As he enters puberty, we also have to be on the lookout for possible signs of depression as that is something that many, many people with autism begin to deal with at that time. So this is not a one and done deal. This is an ongoing process that requires a lot of vigilance on the part of the parent to be sure that whatever treatment that's currently being used is appropriate.
However, getting appropriate treatment is beyond hard. Navigating the mental health system is one of the worst aspects of healthcare. Insurance companies don't want to cover it. Even if your insurance company does cover it, there are convoluted rules that require you to jump through all sorts of hoops to justify treatment. Taxpayers don't want public health programs to cover it. It is as if mental illness is somehow more of a choice than, say, heart disease or cancer. Oh, how I wish that were so.
And I know we are not alone in this struggle. As I read here:,
"The Centers for Disease Control and Prevention (CDC) find that about half of U.S. adults will develop a mental illness during their lifetime. One in four adults experiences a mental disorder in any given year, and one in 17 lives with a serious mental illness like schizophrenia, major depression or bipolar disorder. By 2020, mental and substance use disorders will surpass all physical diseases worldwide as major causes of disability."Keep in mind that autism is considered an epidemic at 1 in 88. So if 1 in 17 adults has some sort of severe mental disorder, this is NOT rare.
"Sadly, almost 40 percent of people with mental and substance use disorders never get treated. Those who seek treatment typically do so after a decade or more of delays, during which time they are likely to develop additional problems"And treatments do work. The success rate for treatment of serious mental illness ranges from 60 to 80 percent. It is difficult to seek out treatment, but it is worth it, for both the person affected and their community. However, that decade of delays speaks to the many barriers that there are to accessing affordable, effective mental health services.
According to the American Academy of Pediatrics,
"70% of children and adolescents who are in need of treatment do not receive mental health services."
"For the families that seek services, 40% to 50% terminate treatment prematurely because of lack of access, lack of transportation, financial constraints, child mental health professional shortages, and stigma related to mental health disorders."
Clearly, we are not the only family struggling to access and maintain appropriate mental health services for our child.
So after reading a lot of commentary about the recent events in CT, I feel the need to say this: Good parenting, love, and prayer are not going to prevent mental illness. Can bad parenting and abuse be contributing factors? Yes. But please don't assume that a parent can prevent mental illness either. Trying as hard as I can to do the right thing and still watching my child fall apart from time to time is crushing. Hearing statements from people that imply that mental illness is caused or prevented by parenting makes it even worse.
For more information on mental illness and to help advocate for better access to good mental health services for all, please visit NAMI - National Alliance on Mental Illness.