The Cost of Knowledge: Analysing the Impact of Federal Data Access Changes on Autism Research
A recent article, “Federal Proposal Could Have ‘Chilling Effect’ On Disability Research,” raises a critical issue that demands the attention of the disability community, particularly those invested in autism research (like me). The piece sheds light on a new federal proposal put forth by the Centers for Medicare & Medicaid Services (CMS) that could have far-reaching consequences for the future of disability research.
At the heart of the article lies a deep concern for the potential impact of the CMS proposal on the accessibility and affordability of essential data for researchers studying autism. The proposed changes, which include mandating the use of CMS’s cloud-based system for data access and significantly increasing fees for such access, have sent shockwaves through the research community.
The article serves as a clarion call, urging stakeholders to consider the ramifications of these changes on the progress and scope of autism research. By drawing attention to the experiences and apprehensions of prominent researchers in the field, the article underscores the vital role that Medicaid and Medicare data play in understanding autism prevalence, healthcare utilisation, and the efficacy of “interventions” for autistic individuals.
As an autistic person and researcher, I find myself deeply invested in the issues raised by the article. The potential impact of the CMS proposal on autism research hits close to home, as I recognise the importance of continued and accessible research in improving the lives of those ‘on the spectrum.’ Research informed by Medicaid and Medicare data has the power to shape policies, services, and support systems that directly affect the autistic community, making this issue a matter of great personal significance.
Background on the Federal Proposal
The CMS has put forward a proposal that aims to overhaul the way researchers access Research Identifiable File data (RIFs). Under the new plan, all researchers would be required to use CMS’s cloud-based system to access the data, eliminating the current option of obtaining files to store at their own institutions. Additionally, the proposal calls for a drastic increase in fees associated with data access, raising concerns about the affordability and accessibility of this critical resource.
“Under the plan, researchers would pay an upfront cost starting at $20,000, plus an annual renewal fee of $10,000 and the costs would apply to each user. That’s a significant factor since many research projects involve teams.”
While CMS has cited data security concerns and the need to reduce data breaches in the healthcare ecosystem as the primary motivations behind the proposal, it is essential to examine these justifications critically. In an era where corporate influence and consolidation of power are increasingly prevalent, it is not unreasonable to question whether this proposal serves the interests of the public or those of wealthy corporations seeking to control the narrative surrounding autism and disability research.
By mandating the use of CMS’s cloud-based system and significantly increasing access fees, the proposal risks creating a financial barrier that could effectively lock out all but the most well-funded research institutions and corporations. This, in turn, could lead to a concerning scenario where only those with deep pockets and vested interests have the ability to shape the direction and focus of autism research.
Moreover, the proposal’s potential to restrict access to critical data could hinder the ability of independent researchers like me, advocacy groups, and community-based organisations to conduct studies and analyses that challenge the status quo or explore alternative perspectives. This consolidation of research access in the hands of a few powerful entities raises valid concerns about the potential for bias, selective reporting, and the promotion of “approved narratives” that align with corporate or political agendas.
As we navigate an increasingly complex and politically charged landscape, it is crucial to remain vigilant and question the motivations behind proposals that could have far-reaching consequences for the disability community. Whilst data security is undoubtedly a legitimate concern, we must ensure that efforts to address these issues do not inadvertently contribute to the further marginalisation and silencing of voices that are essential to the progress and well-being of autistic individuals and their families.
The CMS proposal, in its current form, risks exacerbating existing inequalities in autism research and reinforcing a system that prioritises the interests of the powerful over the needs of the community it purports to serve. As stakeholders, advocates, and concerned citizens, we must demand transparency, accountability, and the preservation of access to critical data that can inform meaningful change and improve the lives of those on the autism spectrum.
Implications for Autism Research
The implications of the CMS proposal for autism research are both profound and deeply concerning. The article highlights the apprehensions of prominent researchers like Eric Rubenstein and David Mandell, who warn that the proposed changes could severely restrict or even halt crucial research on autism and other developmental disabilities.
Rubenstein, for instance, notes that his current project’s data costs would skyrocket from $250,000 to a staggering $2.5 million under the new pricing structure. This astronomical increase in costs would render many research projects financially unfeasible, effectively shutting down vital lines of inquiry that rely on Medicaid and Medicare data.
The importance of Medicaid and Medicare data in understanding autism cannot be overstated. These datasets have been instrumental in shedding light on autism prevalence, healthcare utilisation patterns, and the effectiveness of various “interventions” and “treatments” among autistic individuals. Without access to this data, our ability to comprehend the complex realities of autism and develop “evidence-based strategies” to support the community would be severely compromised.
However, the implications of the CMS proposal extend beyond the immediate financial constraints it imposes on researchers. The consolidation of data access in the hands of a few wealthy corporations and institutions raises the specter of “evidence mills” that could generate corporate-approved “evidence-based practices” without the necessary checks and balances provided by independent researchers.
In such a scenario, the scientific integrity of autism research could be compromised, as the pursuit of knowledge becomes subordinate to the interests of those who control the data. This could lead to the proliferation of questionable interventions and treatments that lack robust evidence or, worse yet, may cause harm to autistic people.
Moreover, the inability of independent researchers to access and analyse Medicaid and Medicare data could stifle the development of alternative perspectives and critical voices that challenge the dominant narratives surrounding autism. Without the opportunity to interrogate the assumptions and biases that underpin corporate-approved practices, we risk perpetuating a narrow and potentially misleading understanding of autism that fails to capture the diverse experiences and needs of the community.
The silencing of dissenting voices and the erosion of scientific rigor in autism research is a deeply troubling prospect. It threatens to undermine the progress we have made in recent decades towards a more nuanced and inclusive understanding of autism, and it risks further marginalizing a community that has long been subject to misconceptions and stigma.
As we grapple with the implications of the CMS proposal, it is essential that we remain vigilant in defending the integrity of autism research and the right of independent researchers to access and analyse critical data. We must push back against the consolidation of knowledge in the hands of a few powerful entities and demand transparency, accountability, and the protection of scientific inquiry from corporate and political influence.
The stakes could not be higher. The future of autism research, and the lives of countless autistic individuals and their families, hang in the balance. It is our collective responsibility to ensure that the pursuit of knowledge remains a public good, guided by the principles of scientific integrity and the unwavering commitment to improving the lives of those on the autism spectrum.
Personal Perspectives
As an autistic person and an autism researcher, I have a deeply personal stake in the issues raised by the CMS proposal. My experiences navigating the world as a non-verbal autistic person have shown me firsthand the importance of continued and accessible research in understanding and improving the lives of autism people.
Throughout my journey, I have witnessed the profound impact that research informed by Medicaid and Medicare data has had on the services, policies, and supports available to autistic individuals. These datasets have been crucial in shedding light on the unique challenges and needs of our community, informing the development of policies and practices that have the potential to transform lives.
It was this recognition of the power of research to effect meaningful change that led me to establish the Praeceptory at Towcester Abbey, an independent autism support non-profit and research organization, in 2015. As the founder and chair of the organization's HHS-registered IRB, I have been committed to ensuring that our research is guided by the highest ethical standards and is responsive to the diverse experiences and perspectives of the autism community.
Through my work at the Abbey, I have seen how access to comprehensive and reliable data can empower researchers to ask critical questions, challenge assumptions, and develop innovative approaches to support autistic individuals and their families. The insights gleaned from Medicaid and Medicare data have been instrumental in shaping our understanding of the complex realities of autism, from the prevalence of co-occurring health conditions to the barriers individuals face in accessing quality healthcare and support services.
However, the CMS proposal threatens to undermine the progress we have made by erecting financial and bureaucratic barriers that could effectively shut out independent researchers and organizations like ours. The astronomical increase in data access fees and the consolidation of control in the hands of a few powerful entities risk creating an environment where only those with deep pockets and vested interests can shape the direction of autism research.
As an autistic researcher, I am deeply troubled by the potential consequences of this proposal for the integrity and inclusivity of autism research. The voices and experiences of autistic individuals, particularly those who are non-verbal or have complex support needs, are often underrepresented in the dominant narratives surrounding autism. The CMS proposal risks further marginalising these voices and perpetuating a narrow and potentially misleading understanding of autism that fails to capture the rich diversity of our community.
Moreover, the erosion of independent research and the proliferation of corporate-approved “evidence-based practices” could have dire consequences for the quality and effectiveness of services and supports available to autistic individuals. Without the ability to interrogate the assumptions and biases that underpin these practices, we risk subjecting our community to interventions that are, at best, ineffective and, at worst, actively harmful.
It is imperative that we, as a society, recognise the critical importance of preserving access to comprehensive and reliable data for autism researchers. We must push back against attempts to consolidate control over knowledge and demand transparency, accountability, and the protection of scientific integrity from corporate and political influence.
Me being me, I remain committed to fighting for a future where the pursuit of knowledge is guided by the principles of inclusivity, diversity, and the unwavering commitment to improving the lives of autistic person. It is a future that demands our collective effort and vigilance, but one that is essential if we are to build a world that truly values and supports the full range of human experience and potential.
Potential Consequences
The potential consequences of the CMS proposal extend far beyond the immediate impact on current autism research projects. The proposal’s implications for the future of autism research are both profound and alarming, threatening to stifle progress and innovation in a field that is critical to understanding and addressing the needs of the autistic community.
One of the most significant concerns raised by the proposal is its potential to hinder the training and development of new researchers in the field of autism studies. As John Tschida warns, the “chilling effect” of the proposed changes could discourage aspiring researchers from pursuing careers in this area, as the financial and bureaucratic barriers to accessing critical data become increasingly insurmountable.
This is particularly worrying given the fact that most autistic people, who are often best positioned to contribute to autism research due to their lived experiences, exist below the poverty line. The astronomical increase in data access costs proposed by CMS would effectively shut out the vast majority of autistic researchers and advocates who lack the financial resources to pay for access to Medicaid and Medicare data.
Moreover, the proposal comes at a time when many autistic-led research charities are already struggling to make ends meet in the wake of the AutistCARES Act, which consolidated government autism spending in large corporations. The CMS proposal would only exacerbate the financial strain on these organisations, further marginalising the voices and perspectives of autistic individuals in the research process.
It is important to note that the proposed increase in costs is not justified by the changes outlined in the proposal. The CMS has failed to provide a clear rationale for the drastic price hikes, raising questions about the true motivations behind the proposal. This lack of transparency and accountability is deeply concerning, as it suggests that the interests of powerful corporations and institutions may be taking precedence over the needs of the autistic community.
The consequences of this proposal for the future of autism research cannot be overstated. By erecting financial and bureaucratic barriers to data access, the CMS risks creating a research landscape that is increasingly dominated by a handful of wealthy corporations and institutions. This consolidation of power could lead to a narrowing of research priorities and a homogenization of perspectives, as alternative viewpoints and approaches are effectively silenced.
Furthermore, the “chilling effect” of the proposal on future studies could have devastating consequences for our understanding of autism and our ability to develop effective support systems. Without a diverse and vibrant research community, we risk stagnating in our knowledge and perpetuating outdated and harmful stereotypes about autism.
It is crucial that we recognise the potential long-term impacts of the CMS proposal and take action to prevent its implementation. We must demand transparency, accountability, and a commitment to inclusivity and diversity in autism research. This means ensuring that autistic individuals, particularly those from marginalised and underrepresented communities, have a seat at the table and a voice in shaping the direction of research.
We must also push back against attempts to consolidate power and control over knowledge in the hands of a few wealthy corporations and institutions. The pursuit of understanding and improving the lives of autistic individuals cannot be left to those who prioritise profit over the well-being of the community.
As such, the future of autism research depends on our collective willingness to stand up for the principles of scientific integrity, inclusivity, and the fundamental right of all individuals to participate in the generation of knowledge about their own lives and experiences. It is a fight that will require sustained effort and vigilance, but one that is essential if we are to build a world that truly values and supports the full spectrum of human diversity.
Call to Action
In light of the profound implications of the CMS proposal for the future of autism research and the well-being of the autistic community, I feel compelled to issue an urgent call to action. This is not a matter that we can afford to ignore or leave to others to address. It is a critical moment that demands the active engagement and participation of every individual who cares about the rights and dignity of autistic people.
As you know, I typically refrain from asking my readers to contact their elected representatives, recognising that such calls can sometimes feel overwhelming or futile. However, the gravity of this situation demands a different approach. The CMS proposal represents a fundamental threat to the integrity and inclusivity of autism research, and its consequences will be felt for generations to come.
That is why I am urging each and every one of you to take action today. The most immediate step you can take is to provide feedback directly to CMS on their proposal. The deadline for stakeholders to submit comments is May 15, 2024, giving us a limited window of opportunity to make our voices heard. I cannot stress enough the importance of flooding CMS with a clear and unequivocal message: this proposal is unacceptable and must be withdrawn.
But our efforts cannot stop there. We must also mobilise our networks and communities to raise awareness about this critical issue. Share this article with your friends, family, and colleagues. Post about it on social media. Engage in discussions and debates about the future of autism research and the role of autistic individuals in shaping that future. The more people we can bring into this conversation, the harder it will be for those in power to ignore our concerns.
I also encourage you to support the advocacy efforts of organizations and individuals who are fighting to protect the integrity and inclusivity of autism research. Groups like the Autistic Self Advocacy Network (ASAN) and the Association of University Centers on Disabilities (AUCD) have been at the forefront of this battle, and they need our support now more than ever. Consider making a donation, volunteering your time, or simply amplifying their message through your own channels.
It is important to recognise that this fight is not just about a single proposal or a specific set of data. It is about the fundamental right of autistic individuals to have a voice in the research that shapes our lives and our futures. It is about the need for a research landscape that is diverse, inclusive, and accountable to the communities it serves. And it is about the kind of world we want to build – one that values the full spectrum of human experience and potential.
I know that the challenges we face can sometimes feel overwhelming, and it can be tempting to retreat into despair or apathy. But I believe in the power of our collective voice and our shared commitment to justice. Together, we have the ability to shape the future of autism research and to create a world that truly sees and values the humanity of every autistic person.
So let us seize this moment and rise to the challenge before us. Let us flood CMS with our feedback, raise our voices in protest, and support those who are fighting on the front lines of this battle. Let us show the world that the autistic community will not be silenced or marginalized, and that we will not rest until the dignity and rights of all autistic individuals are respected and upheld.
The deadline is May 15, 2024. The time to act is now. Together, we can make a difference.
Final thoughts …
To wrap this up, the CMS proposal to restrict access to Medicaid and Medicare data and dramatically increase fees for researchers poses a grave threat to the future of autism research and the well-being of the autistic community. Throughout this review, we have explored the far-reaching implications of this proposal, from its potential to shut down critical lines of inquiry to its chilling effect on the training and development of new researchers in the field.
At the heart of this issue lies the fundamental importance of accessible, comprehensive, and reliable data for disability research. Without access to this data, our ability to understand the complex realities of autism and develop evidence-based strategies to support autistic individuals and their families will be severely compromised. The CMS proposal risks creating a research landscape that is increasingly dominated by a handful of wealthy corporations and institutions, marginalizing the voices and perspectives of autistic individuals and independent researchers.
As an autistic person and researcher, I have seen firsthand the transformative power of research informed by the lived experiences and insights of the autism community. Through my work at the Abbey, I have witnessed how access to data and the freedom to pursue independent lines of inquiry can lead to groundbreaking discoveries and innovative approaches to support and empower autistic individuals.
However, the CMS proposal threatens to undermine this progress and stifle future advances in our understanding of autism. It is a stark reminder of the ongoing need for advocacy and involvement from the autism community in shaping the policies and practices that affect our lives.
As I reflect on the challenges before us, I am struck by the resilience, creativity, and determination of the autistic community. Despite the many barriers we face, we have always found ways to support one another, to amplify our voices, and to fight for our rights. It is this spirit of solidarity and commitment to justice that gives me hope for the future.
But hope alone is not enough. We must also take action. We must stand up against attempts to restrict access to knowledge and silence alternative perspectives. We must demand transparency, accountability, and a seat at the table in the decisions that shape the direction of autism research. And we must work tirelessly to build a world that truly values and supports the full spectrum of human diversity.
The fight ahead will not be easy, but it is one that we cannot afford to lose. The stakes are too high – for autistic individuals, for our families, and for society as a whole. But I believe that together, we have the power to create change and to shape a future that is more just, more inclusive, and more responsive to the needs and aspirations of the autism community.
So let us move forward with renewed purpose and determination. Let us continue to advocate, to research, and to support one another in the face of adversity. And let us never lose sight of the ultimate goal – a world in which every autistic individual has the opportunity to thrive and to reach their full potential.