The recent announcement of new federal rules to the military health insurance program (TRICARE) would put thousands of military children with developmental disabilities such as autism at-risk of losing critical behavioral treatment and care. Senators Patty Murray (D-WA), a member of the Senate Veterans' Affairs Committee, and Kirsten Gillibrand (D-NY), a member of the Senate Armed Services Committee, have expressed their outrage over the new policy which cuts off care for children who do not show progress over a six month period.
The new policy reveals a complete lack of understanding of the needs of children with developmental disabilities. The Senators urged the head of TRICARE to explain how the restrictive rules that require standardized testing, limit the eligibility of treatment, and set an age limit on receiving the care were determined and urged the agency to consult with experts before the new rules go into effect on July 25th.
"Last year, new policies cut off children with Down syndrome, cerebral palsy, and other developmental disabilities from receiving the care they need. And this year, the Department has taken another step in the wrong direction," said Senator Murray. "It's time for the Department to end this shortsighted policy and provide every child with a disability from a military family the care and support they need to live happy, successful, and independent lives."
"This new policy falls woefully short in providing essential services for children of military families who are suffering from autism," said Senator Gillibrand. "We must ensure that our military families who have sacrificed so much have access to the critical treatment, care and support they desperately need and deserve."
The Senators wrote in a letter to Assistant Secretary of Defense for Health Affairs & Director of TRICARE Management Activity, Dr. Jonathan Woodson, "We are writing to express complete frustration and dismay over the recent changes to coverage of applied behavior analysis (ABA) for all TRICARE eligible beneficiaries with autism. Prior to last year, children with developmental disabilities other than autism were also receiving and making progress from ABA services. However, new policies last year resulted in these children losing access to ABA services. The policies we write about today are another step in the wrong direction... The apparent lack of understanding of the needs of children with developmental disability, including autism, when drafting the recent TRICARE policy changes is astounding. The departure from how TRICARE covers all other medical care is also very concerning. Before these new policies are in effect, we strongly urge you to consult with experts in developmental disabilities such as autism and ABA treatment practices."
The Senators emphasized that children of military families often experience regression due to life events such as deployment, relocation, and new school environment and returning from periods of regression often take significant time and effort. The Senators also requested prompt responses to their list of questions, including on what basis these rules were determined.
Autism is the fastest growing developmental disability in the country, with over 23,000 TRICARE beneficiaries diagnosed with autism. Nationwide, this disease affects 1 in 88 children and 1 in 54 boys, according to the Centers for Disease Control.
Full text of the Senators' letter is below:
Dear Dr. Woodson,
We are writing to express complete frustration and dismay over the recent changes to coverage of applied behavior analysis (ABA) for all TRICARE eligible beneficiaries with autism. Prior to last year, children with developmental disabilities other than autism were also receiving and making progress from ABA services. However, new policies last year resulted in these children losing access to ABA services. The policies we write about today are another step in the wrong direction. Together, these two coverage changes are inconsistent with best practices, depart from how TRICARE covers all other medical care, are overly restrictive, and will delay and interrupt direct services for thousands of military children.
The new policies require standardized testing every 6 months, and "measurable progress" on indicated tests must be shown to receive continued ABA care. We understand the importance of standardized testing to establish baseline data, and TRICARE coverage of these tests and assessments is important to the overall treatment plan, but we are very concerned that you are using the results of these tests inappropriately.
Your new policy also requires a patient show progress to receive continued care. This is a significant shift in how TRICARE covers all other medical services. Military children with developmental disabilities such as autism often experience periods of regression due to life events (such as deployment, relocation, change in school, change in medications, etc.). Coming back from those periods of regression often takes significant time and effort (months and sometimes years), and sometimes progress may be simply the absence of regression. During these challenging times of need, discharging an individual from care is inappropriate and will have long lasting results on patient outcomes.
We ask you to address the following:
Please explain how the required standardized tests (Vineland Behavioral Scale II (VBS-II) and Autism Diagnostic Observations Scale, Second Editions (ADOS-2)) measure progress made on an ABA treatment plan.
Are the VBS-II and the ADOS-2 valid and reliable for this purpose? What authorities support using the tests to measure progress on an ABA treatment plan?
What other chronic healthcare conditions, or treatment services listed in the TRICARE Policy Manual, require specific standardized testing for care to be authorized or require progress for care to be continued?
Please explain why annual assessments and standardized tests are needed to reconfirm a diagnosis of a developmental disability such as autism.
Please explain why you now require waivers for care beyond two years and for individuals over age 16. How did you determine age 16 as a cut off? What authority supports discontinuing care after two years of treatment or after an individual reaches age 16?
Given the challenges in measuring a patient's response to treatment, why have you set out discharge criteria for beneficiaries? Please explain how you will determine whether skills acquired in treatment are generalized or durable over time.
What are the qualifications of staff at the Managed Care Support Contractors (MCSCs) who will be assessing psychometric testing results and treatment plans for "clinical appropriateness"? Can you verify the MCSCs are able to implement all aspects of this policy by July 25, 2013?
These changes significantly alter how beneficiaries will receive ABA care. How will you communicate these changes to beneficiaries and providers, and how will you ensure care is not interrupted?
Given the impact family health care plays on military readiness, it is essential military families have assurances of continued health care. Policies inconsistent with good clinical practice only serve to limit, restrict, delay, and deny care. The apparent lack of understanding of the needs of children with developmental disability, including autism, when drafting the recent TRICARE policy changes is astounding. The departure from how TRICARE covers all other medical care is also very concerning. Before these new policies are in effect, we strongly urge you to consult with experts in developmental disabilities such as autism and ABA treatment practices. We are happy to provide you contacts with many in different states across this country.
Thank you for your attention to this matter, and we look forward to your prompt response to our inquiries.