Researchers heavily rely on Medicaid and Medicare data to understand the experiences of individuals with autism and other developmental disabilities. However, a new proposal from the Centers for Medicare & Medicaid Services (CMS) threatens to limit access to this crucial information for research.
The proposed changes include requiring all access to go through CMS’s cloud-based system (citing security concerns), with significantly increased fees. Researchers fear that these changes could hinder their ability to conduct essential research, with upfront costs starting at $20,000 and annual renewal fees of $10,000 per user.
These policies could stifle research efforts and limit insights into the experiences of individuals with developmental disabilities. Concerns have been raised about the impact on research funding, the development of new talent in the field, and the overall accessibility of vital data.
CMS has extended the feedback deadline until May 15 and emphasizes its commitment to expanding secure access to the data while considering researchers’ needs. However, the proposed changes continue to raise alarm bells among researchers who rely on this data for their work. If approved, changes could take effect as early as August, 2024!
So what does this mean for research?
Well, for one thing, it may put more barriers in place that can significantly impact the disability community. A research project has to account for data costs in everything they do. There has been talk about funding from the NIH (National Institute for Health) not quite keeping up with the rising costs of conducting research and trials. This can be particularly concerning for the disability community, and even more so for the rare disease community.
At the end of the day, this may well be just another hurdle for our community. We do not have access to the same funding as many other conditions. Of course, we know that if this proposal is implemented it will have an impact that likely reaches beyond developmental disability and extends into the broader disability community including our HOD community.
Read more about the proposal and all it entails here.
Get a more in depth, easy to understand break down here at Disability Scoop!
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