Military Healthcare does not cover Autism Treatments
My glasses were in need of repair so I went to the Optical Shop to see if they could be fixed. It was Sunday and the shop was closed. I was drawn to walk a few doors down from the Optical Shop to the Military recruiting location. Outside a white van with North Carolina plates was surrounded by about 30 people. The van idled while several young men boarded. Mothers, fathers, brothers, sisters, and grandparents huddled all in tears. I stood in silence with the families for a little while and asked a dad what branch of the service had these fine you men volunteered for? The dad replied, “The Marines!” Seconds later the van doors closed and the van drove off. I felt compelled to wave with the families and say, “Thank you to the families and God Bless.”
The day before I had the distinct honor to speak with Karen Driscoll, Director of a non-profit organization called ACT Today! for Military Families, military wife, and mother of a child with autism. http://www.acttodayformilitaryfamilies.org Karen described staggering statistics. 1 in 88 military children have autism and less than 10 percent are receiving recommended care and treatments. Our military health care system called TRICARE is in urgent need of reform to include military families that need access to appropriate care and treatment services.
How can this be America? Thousands of military families making incredible sacrifices are excluded from basic care and treatments for their children with autism. Military families are in or face financial ruin as their children with autism go without proven treatments to improve the quality of life.
Dear military families of children with autism, my family stands with yours and will help you spread the word to urge military TRICARE decision makers to come to their heartfelt senses and include children with autism. After all, why would potential recruits want to volunteer for the military knowing that TRICARE may not have their backs covered for their children?
With due respect to TRICARE decision makers; you can do better. Please include families with autism NOW!
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@Morningstarrising@xanga – ECHO is in the habit of DENYING services right now.
January 2, 2008
Dr. Robert M. Gates
Secretary of Defense
1000 Defense Pentagon
Washington, DC 20301-1000
Re: Funding for vital intensive autism treatment and respite care for military personnel.
Dear Secretary Gates,
My name is Karen Simmons and I am the Founder and CEO of Autism Today, the largest online information and resource center globally for autism spectrum disorders. I came from a military family background and was a USAF Woman in the Air Force, so I am fully aware of the many challenging circumstances confronting military personnel on a continuous basis, such as frequent deployments and continual relocations. I am also a parent of a child with autism, another with a non-verbal learning disorder, along with four other children and know all too well how troubling life can be for all concerned on the autism spectrum, especially the families involved. In this day and age it is of the utmost importance to do everything we possibly can, especially, in support our military personnel who are serving the United States of America.
Difficulties surrounding autism: Many of the difficulties surrounding autism spectrum disorders include behavioral, sensory, communication and social skill challenges. In addition, people on the autism spectrum have a hard time understanding their environment when their routines are broken which is much the case with constant moves. When these factors are combined with the more daunting issues facing military personnel such as moving, absent parents, placement on the bottom of waiting lists, it’s a recipe for disaster; especially in light of this disorder.
Why early intervention is imperative:
Since neuroplasticity, which is the brains ability to be malleable, is at its peak under the age of five, early intervention is the key to the best lifetime prognosis. By intervening appropriately at this young age, recent statistics indicate that the cost of lifelong care will decrease by 2/3. It is now, more than any other time in history, imperative that everyone understands what autism is, how to best intervene and a method to assure military personnel are receiving adequate support in the way of vital and appropriate early diagnosis and intensive intervention as well as respite care for their families. Additionally, there are developmental, educational and biomedical interventions that could also be beneficial because children with autism have many underlying medical problems.
I applaud the efforts of the Wright Patterson Air Force Base
in beginning the discovery process with their families of those with children on the autism spectrum. By developing a family registry, while conducting research to learn more about autism and develop treatment therapies, more data will be available for genetics research and therapies. It would be interesting to learn whether the intended development of therapies would be based on therapies already in existence or if new models would be created taking the military lifestyle into consideration
Intensive behavioral treatments: As previously mentioned, intensive treatment is required to achieve the best possible outcomes. There are a number of interventions endorsed by the American Academy of Pediatrics and clearly should be offered to military families so they can access intervention and/or treatment. These interventions include ABA, DIR, RDI, TEACCH, SCERTS, and PRT. There are a number of other intensive therapies which could also be considered and offered to military families and are also designed to address the wide diversity of children with autism that may also be considered for military. These interventions include The Miller Method and Daily Life Therapy.
Importance of understanding needs of military personnel:
Of the therapies to consider for military personnel, it is vitally important to take the military lifestyle into consideration such as absent parents, traveling, frequent relocations and transfers, etc. It would be advantageous to form a focus group to evaluate the pro’s and con’s of the different treatments to evaluate the effectiveness of one therapy, or combination of therapies over another. It is important to keep in mind cost comparisons for training of providers as well as the program.
It is my most sincere hope that the military tackles this challenge of quality care for our families serving this great nation. It is our responsibility to provide these families the
much needed
help they so desperately deserve. Would we really expect anything less for our women, men and families that serve our great country?
Sir, we respectfully urge you to authorize the expansion of intensive autism treatments for our military families, so that we can assure the best outcomes for children. I look forward to your response to this letter.
Sincerely,
Karen L. Simmons
Founder, CEO Autism Today
Author, Publisher, “The Official Autism 101 Manual”Co-Author Chicken Soup for the Soul, Children with Special Needs
See petition below from Autism Spectrum doctors and specialists in support of this letter.
Autism StatisticsAutism rates are soaring. It’s a disorder found in children more commonly now than ever before. In fact, more children will be diagnosed with autism this year than AIDS, diabetes and cancer combined
.
Five current, startling statistics:
* Risen from 1 in 10,000 to 1 in 150 over 20 years…6000 % increase
* fastest growing disability there is
* 90% of costs are in adult services
* Cost of lifelong care can be reduced 2/3 with early diagnosis and intervention
* 10 years, the annual cost will be from $200-400 billion
Early interventions in a nutshell:
The goal of behavioral, developmental, and other educationally based interventions is to change a child’s behaviors by working on their communicative, cognitive and social skills, thereby improving autism symptoms rather than cure autism. The most important element of any of these interventions is that the practitioner is the key. They must be proficient in their work while remaining flexible and sensitive to the child’s needs.
Some Common approaches:ABA – Applied Behavioral Analysis
– The most common behavioral intervention that focuses on modifying behaviors through a system of rewards and sometimes punishments. It is performed by therapists in highly structured, individualized and systematic learning environment for the child.
DIR: Floortime or Developmental Individual Difference Relation Based Intervention
, stresses emotional bonding with the child requiring caregivers to do most of the therapy. Developing affection in the child with autism and closing developmental gaps between where the child is and where he is expected to be. Program is structured, individualized and systematic.
rdi
The Miler Method
– Focuses more on cognitive development and aims to close developmental gaps between where the child is and where he is expected to be. Practitioners strive to understand the world from child’s point of view. Every child regardless of how confused they seem is simply trying to make sense of their own environment. It is the practitioner’s job to help the child and enable the child to make choices about their interactions with the environment instead of being constrained by routines and rituals.
TEACCH
– (philosophy) Approach focuses on employing other approaches as needed to provide environment that enables the person with autism to be successful at using their strengths.
Daily Life Therapy – Focuses on balancing physical, emotional and intellectual components of the child. Strives to teach children with autism to successfully interact in groups and later in society.
Relationship Development Intervention or RDI – concentrates on helping children with autism enjoy the pleasures of sharing experiences with others. Practitioners teach the children to be flexible in their interactions with others and to develop emotional connectedness.
SCERTS
The SCERTS Model focuses on the three areas of highest priority for supporting children with autism.
SC – Social Communication – the development of spontaneous, functional communication, emotional expression and trusting relationships with others;
ER – Emotional Regulation – the ability to maintain a well-regulated emotional state to cope with everyday stress, to prevent problem behaviors and to be most available for learning and interacting;
TS – Transactional Support – the development of supports to help children learn, to help partners respond to the child’s needs and interests, to provide educational and emotional support to families, and to foster teamwork among professionals.”
A fully integrated approach to therapy and treatment needs to be considered when the child is diagnosed. This would include the behavioral intervention of choice, proper considerations such as applicable diet, nutrition and exercise programs as well as the assessment of child physical state.
Supporting Doctors:Stephen M. Shore, Ed.D.
Internationally known author and consultant on issues related to autism
Person on the autism spectrum
Stephen M. Edelson, PhD
Director of the Center for Study of Autism Barry M. Prizant, Ph.D., CCC-SLP
Director, Childhood Communication Services
Adjunct Professor, Center for the Study of Human Development
Brown University
Lynne Mielke, M.D.
Founder, Developmental Spectrums Clinic
Defeat Autism Now Doctor
Dr. KaplanWilliam Shaw, PhD
Founder, Executive Director
Great Plains Laboratory
September 5, 2008
Natasha Lee
Reporter, Okinawa Bureau
Stars & Stripes
DSN: 645-3359
Cell: 080-5511-4257
E-mail: [email protected]
Dear Natasha,
I am attaching a picture of me when I was in the Air Force for fun. Also I am attaching the Doyle article you referred to in your email.
“Targeting Military Autism Families For Success”
As founder of Autism Today, world’s largest autism website, mother to a child with autism and another with a NLD and ADHD, plus four other children, I know autism! Also, as a former USAF Medical Service Specialist stationed at Tyndall Air Force Base Florida, a father in the Army stationed in Okinawa during World War II and most recently, a nephew in the army in Afghanistan, I know how troubling life can be, especially for military families. Adding to that challenge by having children diagnosed with autism further complicates the lives of those in the military.
Autism has in increased 6,000% in the past 20 years affecting more than 1 in 150 childen. It is the fastest growing disability with 90% of the costs in adult services. Since neuroplasticity, the brains ability to be malleable, forming new pathways, is at its peak under the age of five, early intervention is the key to the best lifetime prognosis. By intervening appropriately at this young age, the cost of lifelong care is decreased by 2/3. Early detection, diagnosis and intervention, save billions of dollars in adult care and dramatically improve quality of life for all concerned.
There are many exceptional challenges facing military familites who have children with autism. Their needs differ from those of civilians such as constant deployments, absentee parenting, travelling, always being placed on the bottom of wait lists, continual relocations and adjustments to new cultures make this misunderstood disorder even more complex.
Children with autism have difficulties with transitions and need routine and structure. How can the constant changing of support workers who work with children and familites be good? Other difficulties surrounding autism include the inability for children with autism to communicate their needs effectively. A reaction to their environment or a change in routine may result in negative behaviors and inappropriate social actions. When these factors are combined with everything else it’s a recipe for disaster; especially in light of this disorder.
A fully integrated approach to therapy and treatment is imperative right when the child is first diagnosed. This would include recommended behavioral interventions with consideration around nutrition, choice to vaccinate, exercise program as well as the assessment of the child physical state. The goal of behavioral, developmental, and other educationally based interventions is to change a child’s behaviors by working on their communicative, cognitive and social skills, thereby improving autism symptoms rather than to cure autism. The most important element of any of these interventions is that the practitioner is the key. They must be proficient in their work while remaining flexible and sensitive to the child’s needs. To constantly change practitioners can be quite problematic as families move to different bases.
The government needs to do whatever it can to accommodate the families serving our country which would include adequate funding for appropriate early intervention based on the particular needs of each child and their family. Intensive treatment for autism is required to achieve the best possible outcome. There are a number of interventions endorsed by the American Academy of Pediatrics and clearly all should be made available to all military families. These include ABA, DIR, RDI, TEACCH, SCERTS, and PRT. Additionally, there are developmental, educational and biomedical interventions that could also be beneficial because children with autism have many underlying medical problems.
Easy access is another important key for families to receive the support they need from wherever they are. The entire family and support workers need to be taught how to deal with severe behavior, communication issues and especially social and life skills. Huge gaps exist in the allocated funding for early intervention, proper training for support staff, as well as training and support groups for parents. Finding enough properly trained educational & developmental Intervention Support personnel is extremely challenging especially to work for the money offered by the military.
While bases have made great strides in creating programs where families can discuss issues and concerns their children with autism face, actual solutions need to be sought and implemented. Perhaps bases are different than those on in the US, I am certain that most of the challenges face all the military famillies worldwide. The National Defense Authorization Act to allow the Secretary of Defense to develop an assessment of services and programs available to military families while making improvements as necessary sounds good in theory, however, action needs to be taken to solve the problem, not simply talk about solving it.
We have reached out to parents in the different branches of service and the feedback we have received continually is that military families of children with autism are in crisis. They don’t feel like they are listened to, valued or taken care of. Whether it is the lack of access to early intervention, inadequate funding, family support, sensitivity to the autism issue or the fear that if they step up to request certain types of support, such as is offered through the Exceptional Families Program, they might not be considered for promotion; the needs are big. The stigma still exists for all branches of service though support levels vary depending upon the branch of service.
Specific concerns expressed by one of our concerned military families with two children with autism was that since the support staff are paid the equivolent of welfare rates, or one-third of what civilian insurance re-imbursement rates are, many won’t serve military clients. This coupled with having to re-educate all the health care professionals along the way from base to base make it impossible to receive care. She mentioned that The Extended Care Health Option (ECHO) Program currently has over 13,400 military dependent children who have been identified with autism, but only 1,300 of those children have been enrolled into the ECHO program. Acceptance into the ECHO program takes a long time and is difficult to get into, though it is the only way children with autism are able to receive medically necessary and medically prescribed treatment.
She pointed out that in March of this year the Autism Services Demonstration Project was implemented. Since that time it has undergone two re-writings, and is currently undergoing a third. Only one of the many issues was addressed even though the National Defense Authorization Act of 2008 allowed the latitude to address many more urgent needs and treatment requirements for military dependent children with autism, and the latitude to do so immediately.
The NDAA ’08 states that “The applicable military department concerned may establish local centers on military installations for the purpose of providing and coordinating autism services for eligible dependents.The military department concerned is encouraged to enter into partnerships or contracts with other appropriate public and private entities to carry out the responsibilities of this section.” There are organizations who’ve been ready to partner and contract with TRICARE Management Activity to expand the Autism Demo Project, and provide and coordinate autism services. This contract would have expanded the Demo, and expedited services and treatment that a large population of the military dependent children with autism could have received. The Autism Demo Project was rejected by higher military personal for reasons unknown even though this program would have provided so many children with access to medically necessary treatment. Most importantly she points out that it is imperative for children with autism to receive the medically necessary care they require and that it is imperative for the readiness and retention of the All-Volunteer Armed Forces
There are organizations who’ve been ready to partner and contract with TRICARE Management Activity to expand the Autism Demo Project, and provide and coordinate autism services. This contract would have expanded the Demo, and expedited services and treatment that a large population of our military dependent children with autism could have received. The Autism Demo Project was also rejected by higher military personal for reasons unknown even though this program would have provided so many of these children with access to medically necessary treatment.
Autism Today’s goal for military families who have children with autism is
targeting military autism families for success
. We are doing this by partnering with Keri Bowers of Normal Films to provide power tools entire special needs families can use today and tomorrow to improve the quality of daily living. Through her program,
“Mapping Transitions to Your Childs Future”
families embrace these new strategies so they become a natural part of the Family Care Plan essential to military familes.
“Mapping Transitions to Your Childs Future”
provides in depth and specific life long strategies and critical knowledge for familes transitioning through a family care plan. My family of eight has had first hand experience with Keri’s program which is why I was so excited to implement it into what we do at Autism Today. The experience allowed each member of our mixed culture, multi-dimensional special needs family to see each other’s strengths and accept each other for whom and what we are, honoring and respecting each other’s differences and uniqueness.
We also work with members of the senate and congress, as well as other government officials, through correspondence, education and resources such as books, conferences, programs and services to support and educate them about the needs of the military personnel who have children with autism.
It is our most sincere hope that the military tackles this challenge of quality care for our families serving this great nation. These families need to have the necessary supports in place for their children with autism so the service member can be on the front line without worrying about their children and families back home. It is our responsibility as the great nation that we are to ensure these families are well taken care of.
@ProudArmyWife –
Dear ProudArmyWife,
The passion that you express for your son and the military is most heart-felt and commendable. Your family is one of the lucky few (less than 10%) that has access to important full treatments under the ECHO TRICARE system.
TRICARE is an amazing healthcare system, however, for most families (90% plus) the undeniable facts show treatments simply are not available due to policy technicalities. Of the approximate 19,000 military families with children with autism, over 17,000 families spend countless number of months and years in the back of the State Medicaid lines for treatments because TRICARE ECHO does not cover them. To further complicate the issue; the nature of the military families moves 4 times on average during the critical treatment phase for a child. Each move is faced with extreme frustrations and disappointments as families are faced to additional months and years of delays again. Thus resulting in ineffective low or no treatments.
My suggestion to you and others that are not aware of the devastation experienced by other military families is to view the following websites with factual video information.
· Military Families Fight for Autism Help – http://www.myfoxhouston.com/dpp/health/090923_military_families_autism_help
· Some Families Deal With War, Autism video http://www.myfoxhouston.com/dpp/health/090710_families_military_autism
· Act Today For Military Families http://www.acttodayformilitaryfamilies.org
Please consider being an advocate for the other 90% so that they will experience the best treatments for their families by urging TRICARE and the State Medicaid health systems to include all military families. After all no one gets left behind is the spirit on the battlefields; and military families are deserving of nothing less.
Thank you
This article needs to be re written and you should be ashamed of yourself. THe Military has a special service called ECHO and it does cover care for children with Autism. My son is entitled to ABA therapy and a whole slew of other therapies and treatment. This is what gives the military a bad name posting ignorant stuff that is not researched. Next time check your facts and contact Tricare to verify your facts. The military will even give you a move if services that will help your child are not in the area you are assigned and a move is needed.
morningstarrising.xanga
In response to your response…..
Yes, thanks for your feedback and also for highlighting this very important issue. I hear what you’re saying and OF COURSE, theres a BIG Iissue around supports for kids with autism. I totally GET IT. If we can get the military on side with providing adquate support then they can MODEL to the rest of the world what NEEDS to happen. Lets begin with the end in mind. As a follow on to your comment, Military families impacted by autism suffer tremendous emotional and financial strains. Their quality of life and readiness are compromised by the lack of services and support provided by the existing TRICARE programs.
Currently TRICARE segregates ABA treatment into a separate arm of TRICARE called the Extended Care Health Option (ECHO). ECHO is a secondary enrollment after a child in enrolled in the Exceptional Family Members Program and is only available for dependents of active-duty service members. Dependents of military retirees are not able to access treatment services under the ECHO program.
The ECHO Program categorizes ABA therapy as a special education service. This places a financial cap of $36,000 per year on a military child’s ABA treatment program, which pays for an average of 11 hours of ABA therapy per week. The American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General recommend a minimum of 25-40 hours per week of ABA therapy for a patient newly diagnosed.
Without TRICARE covering ABA treatment, military families impacted by Autism are left to depend on Medicaid and long wait lists for state funded care. With each change in duty station, a family will be moved to the bottom of the state’s waiting list, leaving them without appropriate treatment for their child for months or years. Because of the dollar cap in care, many military families are forced to forgo critically medically prescribed care. Some families have chosen to pay for medically prescribed treatments out of pocket and incur significant debt placing them at financial risk.
Coverage of ABA and other behavioral health treatments in the civilian sector exceed that of TRICARE. Public policy on this issue has developed at a tremendous rate leaving the military child behind the curve. Mental Health Parity Act of 2008 (HR6983) was enacted in October 2009 and removes all financial caps for mental health treatments, and requires that coverage of mental health disorders be consistent with other medical conditions. To date, 21 states have passed legislative measures that specifically require insurers to provide coverage of evidenced based, medically necessary treatments for ASD. Coverage of ABA therapy is specifically listed in all 21 states. Similar legislation is pending in 24 additional states. The health care reform legislation signed 24 March, 2010, makes behavioral health treatments part of the essential health benefits that must be included in certain health plans; it will also remove financial caps in coverage. Unfortunately both state and federal laws fail the military child with an ASD as TRICARE is exempt. Public policy has now exceeded that of TRICARE.
Families, senior military leadership, and senior military medical experts recommend the DoD change current TRICARE policy to provide ABA and other intensive behavior intervention services in line with 25-40 hours per week as recommended by the American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General. Making ABA therapy a basic entitlement under TRICARE for eligible dependants diagnosed with an ASD is essential to supporting military families. The assurance of family care is critical for mission readiness. Our military families deserve the quality of care that is equal to their heroic service and sacrifice in defense of our Nation, our people, and our freedom.
Thanks again for your feedback!!!
I’m sorry, but where in the world are you getting this information? The military health care, aka Tricare, offers ECHO – the extended health care option for patients who have autism. More information can be found here:
http://www.tricare.mil/mybenefit/ProfileFilter.do;jsessionid=MfZHPsMGgh2JDT3wxpjzpb1rNpzRXJj0dPtp2Q6tK6pthzFn3mGQ!907227684?puri=/home/overview/SpecialPrograms/ECHO
If people aren’t getting services, they aren’t involving their spouse’s command enough and they aren’t going through the proper channels in order to receive help. The help is out there… but you have to be smart and actually look for it, and get enrolled in the military’s exceptional family member program. If you don’t do that, well, then sure, autism benefits won’t be covered because you won’t have gone through the proper channels.
Perhaps some people want the military to pay 100% for every treatment. I can’t understand that thinking. My kids and their issues are my responsibility – if they need specialized treatment, of course I’ll want my insurance to subsidize it (and they do). But that doesn’t mean that I think that the military should pay for the entirety of it. Also, a lot of people in the military are NOT using the school system to its full potential. While the school systems are not perfect, it’s FREE therapy along with education. We will do supplemental speech and occupational therapy on top of what the school provides (in the fall).