Thoughts on Veteran's Day for Military Families Living with Profound Autism

by Judith Ursitti

Growing up as the dependent of a military retiree (Go Navy!) I am familiar with the unique challenges of receiving healthcare, support, and services from this bureaucratic system. I remember showing my military ID card at the door before loading up our shopping carts at the commissary or buying my annual pair of school shoes at the base exchange -- what we always called the BX.

I also remember waiting for hours to receive basic healthcare at Fort Sam Houston, Randolph Air Force Base, and Wilford Hall. I rarely saw the same doctor. The overloaded system didn't lend itself to anything that might require specialization or ongoing support.

I think about this a lot these days. Through the years, navigating the universe of profound autism, I've met many who serve our country in various branches of the military. The realities they face aren't mere inconveniences like they were for my family. They are life-altering.

Imagine moving from state to state because of your current assignment and landing at the bottom of the wait list for essential Medicaid services, which in some states is a decade long. Services provided through the military's Autism Care Demonstration can be impossible to access due to low reimbursement rates and an incredibly cumbersome provider manual. Imagine trying to do that when your military spouse is deployed somewhere far away. 

This Veterans Day, it is important to take a moment to think about the exceptional sacrifices that members of our military and their families make in service to our country every day.

Recently, the National Academies of Sciences Engineering and Medicine has undertaken a study to analyze the Autism Care Demonstration. Specifically, they must conduct an analysis of the effectiveness of the Department of Defense Comprehensive Autism Care Demonstration program and develop recommendations for the Secretary based on such analysis. 

The committee conducting an Independent Analysis of Department of Defense’s Autism Care Demonstration Program will hold a virtual public session with invited researchers on November 22, 2024, 11am-1pm ET. At this session, the committee will engage invited experts in discussion to better understand the distinctions between the type of data and consent usually used for clinical research and clinical care as well as intersections with program evaluation and quality improvement efforts.

The session will consider the differences in purpose, methods, and goals of these different forms of assessment. It will also examine considerations for determining risks, burdens, and benefits for patients and caregivers and best practices for informed consent for each kind of endeavor.

To learn more about efforts related to the Autism Care Demonstration, please visit Mission Alpha Advocacy. You can also register for the November 22 NASEM public session below.