This past month, the Little Friends Board of Directors meeting was held at Northwestern University. One of our board members, Dr. Molly Losh, is the Jo Ann G. and Peter F. Dolle Professor of Learning Disabilities in the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders and the Associate Dean for Research in the School of Communication at Northwestern.
Dr. Losh’s expertise is in research related to Autism and Fragile X syndrome.
Our board met at her facility to gain a better perspective on the research being done at Northwestern particularly dealing with communications and the Autism Spectrum. Part of the reason we also met there is that we have established a registry with Northwestern to enable families the ability to participate in Autism research conducted by university experts.
Please reach out to me if you have interest in these opportunities. I would be happy to help make a connection with their team.
Back to the story… During the meeting, we saw several presentations including an update on the “Reduce the Wait (RTW) Project” being led by Dr. Megan Roberts. Dr. Roberts is a member of the Northwestern University staff and serves as the Primary Investigator of the RTW Project. The genesis for this project came from the idea that a better way might exist to do diagnostic evaluations of children suspected of being on the Autism Spectrum. Wait times in certain parts of the country can literally be years from seeing indications to getting formally tested. Dr. Roberts, through her grant work, is focused on finding and validating new ways to expedite the evaluation process with hopes of getting children into therapy sooner. Her idea confronts current health insurance law, as formal diagnoses at this point can only be done by a psychologist or physician.
Some scary statistics beyond the one in 36 children being diagnosed with Autism to support her initiative. The average wait time for a formal diagnosis is approximately 16 months as of May 2024. Out of the 40K places that will diagnose a child, only 19 places will make a diagnosis before the age of 3. Dr. Roberts wants to improve this and has some interesting results from her initial study results.
The RTW solution involves the combination of using video evaluation and some testing done by early intervention specialists like speech and developmental therapist. The individuals administering the testing went through an additional 20 hours of autism diagnostic training. It was interesting to hear that 65% of the people chosen for the testing had no previous experience with autism screening tools.
The results are eye-opening. Out of 336 children who were both tested by a physician or psychologist AND the intervention specialists, 86% of the time the test results were the same. Both groups agreed with the diagnosis. While the average evaluation wait time today for the current solution is 16 months, the intervention specialists could handle the request for service in one month. Maybe more impressive is that the average cost for an evaluation with the intervention specialists being involved is tracking to $236 per evaluation. This matters significantly when many of those being tested rely upon government assistance for insurance.
I have been an advocate for finding ways to evaluate children faster than we do today. I’ve always thought there must be a better solution, and the RTW project data thus far could provide the energy to get some of the health insurance legislation changed so that early intervention specialists can help.
While not necessarily easy, it looks and feels like it is the right thing to do!