Bill creating voluntary registry identifying residents with disablities released

TRENTON – The Assembly Human Services Committee released a bill creating a Voluntary Registry for individuals suffering from mental illness or who have a developmental disability.

Assemblywoman Mary Pat Angelini cast the sole no vote, while Assemblywoman Holly Schepisi abstained. All the Democrats voted yes.

The bill, A3403, sponsored by Assemblyman Reed Gusciora (D-15) of Trenton and Assemblywoman Valerie Vainieri Huttle (D-37) of Englewood, would provide law enforcement agencies with information to help them assist individuals with a mental illness or developmental disability in obtaining medical, mental health, and social services. The registry would be created by the Department of Law and Public Safety.

The information on the database would expire after three years, according to the bill.

The registry would contain the following information:

     (1)   the individual’s name, birthdate, telephone number, address, physical traits, and picture;

     (2)   information related to the individual’s illness or disability, including related symptoms, which may assist law enforcement officers and agencies in interacting with the individual;

     (3)   the date on which the information was first entered into the registry and any updates made pursuant to receipt of a new enrollment and consent form; and

     (4)   contact information for at least two of the following:  the individual’s primary health care provider; the individual’s case manager; a probation officer; a family member of the individual; or any other person willing to serve as an emergency contact for the individual.

Written consent is needed before the names could appear in the registry.   The bill also requires the development of a revocation of consent form, which would allow an individual or the individual’s representative to have the information removed from the registry.

Huttle said the bill provides an important tool to first-responders, saying there needs to be a better way to reach residents in need. She added that she doesn’t expect  the bill to be a cure-all, but said it’s a step in the right direction.

“It’s essential for law enforcement agencies to get to the most vulnerable residents,” she said. “It provides another tool.”

Michael Pelligrino, a detective with the Ewing Police Department, said  the bill will help police, firefighters and emergency services to better handle situations involving residents who suffer from such things as autism and Alzheimer’s Disease.

“We’ll know that ahead of time,” he said. “We’re going to be able to get that information out to surrounding jurisdictions.”

Dan Keating, of the Alliance for the Betterment of Citizens with Disabilities (ABCD), supports the bill but called for amendments. They included expanding the registry to include individuals who are receiving community provider services.

Steven Cook of ARC Mercer said he “wholeheartedly” supports the bill.

The bill does have some opposition.

Phil Lubitz of the National Alliance on Mental Illness (NAMI) said that while he appreciates the intent of the bill in helping first responders identify special-needs residents, he had several concerns.

“There’s no specific provision that protects the privacy of this database,” he said. “It’s unclear who will have access to this database.”

He added that once word casually gets out about an individual’s condition, “that (the stigma) stays forever,” even if the information comes off the database.

“Information can be shared with other people,” he said. “It really doesn’t do any good…that stigma is going to remain.”

Lubitz said a penalty must be put in place for inappropriate disclosure.

The executive director also had a problem with the amount and degree of training provided to police officers. “We need a much stronger provision for training.”

Barbara Johnston of the Mental Health Association of New Jersey said “this particular solution is not fully developed,” saying the bill may exacerbate stigmas.

“We see a lot of potential harm coming out of it,” she said.

Schepisi, who abstained, said, “Once it’s (the information) on the computer database, it’s there forever.”

She asked if medical bracelets would be a better substitution. Although the bill is well-intentioned, Schepisi said she doesn’t believe it would accomplish its ultimate goal.

Assemblyman Joe Cryan expressed some concerns from a consumer protection perspective, adding that he fears potential  employers may abuse it.  However, an amendment to the bill stating that the registry “shall not be considered a public record,” quashed those fears.