by Karen Driscoll – Marine Corps wife, mother of 3
Military children with Autistic Spectrum Disorders (ASD) are not receiving adequate care and services, which adversely impacts the child’s future, the stress and mental health of the military family and ultimately, the morale, readiness and retention of the All-Volunteer force.
The continuum of care afforded to military children diagnosed with autism is disjointed and compromised due to the frequent geographic moves and the lack of effective services available publicly and through existing TRICARE programs.
Wait lists for state run programs exist in most states effectively denying care for our military children. There is a 10-15 year wait list here in the state of Virginia for Medicaid assistance.
Effective treatment programs are far beyond the resources and ability of public schools to deliver. Schools are underfunded and lack the medical/psychological expertise and oversight needed to provide prescribed therapy. We cannot expect our schools to provide all aspects of treatment for this patient population.
Existing TRICARE programs are inadequate and limit and restrict access to effective care. The current TRICARE Enhanced Care Health Option (ECHO) is ineffective and creates barriers to care resulting in delayed treatment and the denial of services. Data indicates only 5% of military children with autism are receiving some level of assistance through the ECHO program. TRICARE provider requirements are inconsistent with commercial practice further restricting access to this vital service. The ECHO program sets an arbitrary financial limit ($2,500) on a child’s treatment program, which provides roughly 25% of therapy recommended by the American Academy of Pediatrics and prescribed by doctors. Would we limit a child’s cancer treatment to 25%?
There is a severe shortage of service providers who can deliver the intensive level of care children with autism require. Wait lists for providers exist in most locations and access to prescribed level of care is often delayed.
When families can locate a provider, TRICARE reimbursement for services is minimal due to restrictive TRICARE policy regarding who qualifies to deliver such care and a rate structure far below current market rates. Many military families choose to pay for medically prescribed autism treatment themselves and incur significant debt. This places an undue burden on an already stressed family.
The behavior and medical challenges associated with a child with autism are difficult and bring much strain to the family. Autism is described as a condition with a greater number of stressors than any other disability. Depression and anxiety are common among parents of children with autism. Lack of effective services has taken its toll. Families have been without any effective level of care for 2 ½ years since the ECHO program was established. Add the challenges of military life (back to back war time deployments, ongoing relocation, limited finances) and our families are reaching crisis state. More needs to be done. Military families who deploy repeatedly to combat and serve this great nation with honor and integrity deserve nothing less.
Autism is a complex brain disorder. While there is no cure, there are treatments proven to be effective in helping children with autism lead full, active and independent adult lives. Autism is treatable! Among a wide array of interventions for persons with autism, Applied Behavior Analysis (ABA) is distinguished from other interventions because it is proven effective in pro¬moting skill development in persons of all ages with autism. ABA is effective at developing and improving language and communication skills, social interactions, positive family relationships, daily living skills, cognitive and executive functioning, and ameliorating harmful behaviors. Successful treatment depends on quick intervention and intensity of service hours (American Academy of Pediatrics and the National Research Council both recommend a minimum of 25 hours a week…optimal amounts are 30-40 hours). Treatment delayed or not provided at the prescribed amount diminishes effectiveness. It is imperative we break down barriers to care and provide for the prescribed level of treatment children with autism require. Improving the quality of lives of our military children and families must be an important priority.
Lack of care has negative impacts to the health and progress of the child resulting in increased burdens on the family, and anticipated higher health care costs resulting from interruptions in treatment. Our ethical obligation to provide for the health care needs of our military families compels us to correct these deficiencies left unaddressed by TRICARE.
Congressional intervention is needed to effect the changes urgently needed to help our children:
1. Expand the current Demonstration to provide for appropriate levels of treatment, as defined by research and commercial practice, for effective service delivery (up to 40 hours a week). Levels of treatment should be based on the needs of the child and the recommendations of the child’s physician, not a dollar amount.
2. Allow for current market billing rates and use of the “corporate services model” authorized in the FY08 NDAA to allow coverage for a child’s entire therapy team. TRICARE’s “modified corporate services model” is overly complex, provides no incentive for providers to participate, and most importantly delays a child’s access to treatment.
3. Remove eligibility criteria (i.e. IQ eval., age restriction, standardized testing, chart review, etc.) restricting access to care. An ASD diagnosis and a medically prescribed treatment plan from an authorized provider should be sufficient. Additional eligibility and determination requirements place an unnecessary bureaucratic impediment in the way of therapy. Policy should be focused on timely access to treatment.
Include treatment for autism spectrum disorders as a basic entitlement within the TRICARE Basic Program. Autism treatment is medically necessary to treat a neurological disorder and necessary to prevent future physical and mental injury to the child. Autism treatment includes (but is not limited to) Applied Behavior Analysis and other structured behavior intervention programs. Sample legislation compelling revisions to the Code of Federal Regulations is attached.
In response to significant parent and Congressional interest, DoD issued the Enhanced Access to Autism Services Demonstration to “ease access to care” for children with autism. Sadly, the Demonstration had the opposite effect, and no children are receiving services through this program. We need to remove all barriers to care immediately!
Establish DoD Autism Centers of Excellence to develop the mechanism protecting continuity of care which is vital for a child’s success and expand the provider base necessary to deliver treatment.
The assurance of family care is critical for mission and combat readiness. These changes come with additional cost and funding is necessary to provide for this crucial benefit.
We must act now to provide our military families with the quality of care that is equal to their heroic service and sacrifice in defense of our Nation, our people, and our freedom. On behalf of the thousands of military families impacted by autism, I thank you for your serious consideration and action in support of our special children.
Medical Treatment for Children with Autism Spectrum Disorders - Sample Legislation
The Department of Defense will revise the Code of Federal Regulations (CFR) to recognize the medical necessity of treatment for autism spectrum disorders.
Treatment for autism spectrum disorders will be included as a basic entitlement under Sec. 1079 of the United States Code. Treatment for autism spectrum disorders will be considered medically necessary to treat a neurological disorder and necessary to prevent future physical and mental injury to the patient.
Autism spectrum disorders means any of the pervasive developmental disorders as defined by the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), including Autistic Disorder, Asperger’s Disorder and Pervasive Developmental Disorder Not Otherwise Specified.
Because of the inconsistent level of care military children experience, the CFR will not restrict access to treatment because of the qualifying beneficiary’s age nor require diagnosis by a certain age. Policy will look to provide treatment consistent with the individual patient’s need and the recommendations of the patient’s physician.
The Department of Defense shall complete and make effective the CFR revisions no later than 6 months after the date of the enactment of this Act.
CFR changes will address (but are not limited to) the following:
Treatment for autism spectrum disorders will include the following care prescribed, provided or ordered for an individual diagnosed with an autism spectrum disorder by a licensed physician or a licensed psychologist who determine the care to be medically necessary: Habilitative or rehabilitative care; pharmacy care; psychiatric care; psychological care; speech therapy; occupational therapy; physical therapy; and any care for individuals with autism spectrum disorder that is determined medically necessary by the beneficiary’s physician.
Habilitative and rehabilitative care will include professional counseling and guidance services and treatment programs, including Applied Behavior Analysis (ABA) and related structured behavior programs that are necessary to develop, improve, maintain, and restore, to the maximum extent practicable, the functioning of a patient. Applied Behavior Analysis and related structured behavior programs will not be considered a special education service for purposes of this section when prescribed by an authorized TRICARE provider and indicated as a medically necessary service for patients with an autism spectrum disorder and other neuro-impairments which require habilitative or rehabilitative care for the treatment of their respective qualifying condition. Level of ABA coverage will be determined by the need of the patient and recommendations of the patient’s physician and authorized up to 40 hours a week.
All qualifying beneficiaries with an autism spectrum disorder or other neuro-impairment will have access to the TRICARE Extended Care Health Option (ECHO) program under the category of serious physical disability.
The respite benefit included with the ECHO program is designed to provide much needed respite for the family primary caregiver(s). Respite services will be made available each month for the qualifying family enrolled in the ECHO program. Receipt of respite services will not be dependent on receipt of other ECHO benefits and will extend coverage to all siblings. Respite care providers may include (but are not limited to) TRICARE authorized home health agency, state licensed child care providers, or other individuals, organizations, or corporate entities authorized to deliver such services through the respective state Medicaid program.