The Arizona Daily Star has filed special actions demanding that state agencies release data used to determine eligibility for services for people with developmental disabilities as well as closed investigations into abuse, neglect and financial exploitation of adults with developmental disabilities.
The Star, reporter Alex Devoid and freelance contributor Amy Silverman are represented by the First Amendment Clinic at the Sandra Day O’Connor College of Law at Arizona State University. The complaints were filed June 30 in Maricopa County Superior Court.
The Star began seeking the information in 2020, as part of a yearlong project, “State of Denial,” produced in a partnership with ProPublica’s Local Reporting Network. The project won the 2021 Lee President’s Award and first place from the Arizona Press Club in the public service category; it was a finalist for the Anthony Shadid Award for Journalism Ethics, sponsored by the University of Wisconsin-Madison.
“Investigative journalism depends on data, and getting access to information that belongs to the public is a key part of what we do,” Star Editor Jill Jorden Spitz said. “Agencies routinely refuse our requests hoping we will give up. With the First Amendment Clinic fighting with us, we have no intention of giving up.”
The first complaint, filed against the Arizona Health Care Cost Containment System (AHCCCS), the state’s Medicaid agency, centers on anonymized data on applications for services from the Arizona Long Term Care System.
This anonymized data would allow the Star to analyze trends in ALTCS application denials and approvals without revealing the names, or other identifying information, about the applicants.
The Star has been seeking this data since February 2020 through the Arizona Public Records Law, but after the newspaper revised multiple denied requests for these records, AHCCCS refused to grant them.
While the Star has received many anecdotal complaints of denied applications from family members of those with developmental disabilities, the public does not know basic information about the outcomes of applications for long-term care, like the agency’s overall approval rates or the number of applications it processes.
While these data that describe details and outcomes of ALTCS applications are protected by the Health Insurance Portability and Accountability Act, this law recognizes the value of studying these data without identifying the application. So it provides methods for de-identification.
AHCCCS has agreed that some of the application data will be public record once they are de-identified, but the agency has refused to release the data in a manner that will retain its structure and meaning.
The Star is seeking these data to give the public a better understanding of how the state’s Medicaid agency decides who gets long-term care intended for people with developmental disabilities.
In addition to seeking records from AHCCCS, the Star also filed a special action against the state’s Department of Economic Security, demanding the fulfillment of a May 2020 request for the release of closed investigations into allegations of abuse, neglect and financial exploitation of Arizonans with developmental disabilities.
Such investigations typically result in a 1% substantiation rate, making it necessary to review all investigations rather than just those that were successful, to get a feel for Adult Protective Services’ performance. In multiple discussions with the Department of Economic Security, the Star reiterated an understanding that redactions would need to be made in light of a federal law protecting medical privacy. The request was still denied.
