Leaders in the local disability community say they oppose 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 webpage 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.
“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 responsibility?” said Douglas Usiak, CEO of Western New York Independent Living in an interview with Buffalo Toronto Public Media on Wednesday morning.
The webpage also 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. Usiak said this isn’t the first time in his decades of work in disability rights that someone has tried to create a database like this.
“They've always tried to identify, what's the disability, who's the person where they live, and 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. In many cases, the person it's about doesn't have any control about that,” Usiak said.
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. VOICE Buffalo, Western New York Independent Living, and self-advocates gathered outside of Erie County Central Police Services to express their dismay Wednesday afternoon, saying the registry takes away autonomy for people with disabilities.
“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 is it maintained?” Usiak added. “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.”
The first Handle with Care database was created by the Colonie Police Department in Colonie, NY in collaboration with the National Alliance on Mental Illness New York in 2023. According to the New York Criminal Justice Knowledge Bank, the purpose of this registry is “to aid police officers in responding to 9-1-1 calls for people with mental illness, disabilities, autism, Alzheimer’s, or any condition that may require mental health assistance or special aid.”
As of July 2024, the Colonie Police Department’s registry had 90 entries. The Criminal Justice Knowledge Bank notes, of the Colonie Police Department’s registry, that “all registry information is voluntarily submitted, and typically provided by loved ones and caregivers of those in need. Individuals also can enter their own information into the registry, though this is not typical.”
Usiak said he worries this database may create other safety issues though, especially if someone close to a disabled person wants to provide information as a means of retaliation, such as a former partner. Disabled people experience domestic violence more than five times the rate of people without disabilities, according to the U.S. Government Accountability Office.
“There's a number of situations that can provide retaliation to individuals by sharing private information about an individual,” Usiak said. “To have my neighbors, because one day I am yelling at my kids for not letting the dog out, feels ‘okay, that person's out of control,’ and suddenly I get put on a registry, and I'm not even aware of it.”
Usiak said he worries the database may also reinforce stereotypes, or people may be incorrectly entered in the database based on stereotypes or presumption of disability. Usiak urges the Sheriff’s office to rethink the database, talk with the disability community, and instead consider more training for officers or more questions asked by dispatchers when a 911 call comes in. But as of right now, he feels disabled people have been left out of this process.
"From our perspective, my board of directors, we are the largest non-for-profit disability organization in this area, but my board was unanimous is that this is not a registry we want,” he said. “But if 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.”
BTPM NPR has reached out to the Sheriff's office for comment.
