This week on the Disabilities Beat, BTPM NPR's Emyle Watkins talks with Western New York Independent Living's Douglas Usiak about concerns over the Erie County Sheriff's "Handle With Care" Registry. The registry is meant to collect detailed personal information about disabled people, but Usiak worries it could put disabled people at risk if the information is added without their permission. He says disabled people should have full control over whether and how they are listed in any registry. Disability groups are asking the Sheriff's Office to stop the program until they address safety and privacy issues.
TRANSCRIPT
Emyle Watkins: Hi, I'm Emyle Watkins and this is The Disabilities Beat. Last week, leaders in the disability community expressed opposition to a new initiative from the Erie County Sheriff's Office to create a registry of disabled people for use in emergencies. The "Handle With Care" Registry, according to the Erie County Sheriff's website is meant to "better prepare our deputies and emergency responders to provide improved care for your loved one." The registry is designed for someone who knows a disabled person to enter information about the disabled person, including caregivers. The web page asks for information about a "personal/family representative" and a "handle with care person." The form lists several disabilities a person may have as an example of who to enter in the registry including autism, down syndrome, Alzheimer's, dementia and substance use disorder.
Douglas Usiak: It's handle with care as far as what? Are we packages? Are we raising a red flag to law enforcement? Or are we talking about providing care to individuals, which is not a law enforcement's responsibility?
Emyle Watkins: Douglas Usiak is the CEO of Western New York Independent Living. Voice Buffalo, Western New York Independent Living and other self-advocacy groups have openly expressed their concern with the database. Usiak said, "This isn't the first time that someone has tried to create a database like this."
Douglas Usiak: Any type of registry like this just creates a problem because you're identifying people by a functional limitation and you're centralizing that information to individuals, of which in many cases, the person it's about doesn't have any control about that.
Emyle Watkins: The webpage asks for information about the disabled person, including where they work or go to school, what car they drive, their doctor's contact information, medical conditions, race, gender, height, weight, a photo and any "triggers." The form uses language like "vulnerable person" and "special needs" when talking about the handle with care person as they're referred to on the form. The webpage does not include information about how to self-submit your information, check if someone has submitted information about you or how to remove your information from the database if you are concerned.
In a statement from the sheriff's office on Monday, Buffalo Toronto Public Media was told, "Individuals may enroll or remove themselves at any time. All submissions are thoroughly vetted by the ECSO to ensure accuracy and appropriateness." We followed up task for more information about how a person can un-enroll and what the vetting process is. We'll include that information on our website when the sheriff's office responds.
Douglas Usiak: They say it's voluntary, but the problem is it's voluntary about reporting your neighbor, reporting a family member, reporting a friend and then the information that can be collected, and then some unknown person is "filtering and monitoring this" and where is it stored? How is it stored? How's it maintained? There's a lot of concerns about the data and how it's being collected, who's collecting it and what they're doing with it.
Emyle Watkins: We've also reached out to the sheriff to ask how the information is stored and if it is shared with other agencies. The sheriff's office did say in their statement that their database was created by working closely with the Colony Police Department in Colony New York and the National Alliance on Mental Illness, who created the first Handle With Care database in 2023. In Colony, their database is integrated into existing police systems. Their police department also reaches out every six months to update registries.
In their statement to BTPM, the sheriff's office said, "This initiative reflects the core mission of law enforcement to protect and serve, especially those most in need of understanding and care." But Usiak says he worries this may cause more safety concerns, especially if someone close to a disabled person wants to provide information as a means of retaliation, such as a former partner. Disabled people do experience domestic violence more than five times the rate of people without disabilities according to the US Government Accountability Office.
Usiak told BTPM last week that as of right now, his organization, which is led by people with disabilities, does not want to see the database move forward as it stands, especially without consulting with more people with disabilities.
Douglas Usiak: But if people want it, people with disabilities want it, then it should be the person with a disability who fills out the information, verifies that information and that information is kept secure and in a safe manner so that it can be accessed when and if needed.
Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at BTPM.org. I'm Emily Watkins. Thanks for listening.
