Ann Jeannette Pierce is worried by the unexplained bruises and cuts that periodically pop up on her nonverbal adult daughter.  So, the Owensboro woman is asking the Kentucky legislature to make it possible for her and others like her to have cameras in residential facilities such as  the one in which her daughter, Caroline, lives.  Pierce’s proposal would essentially fast-track the current process, which involves an application to a human rights review committee, whose members then decide if it’s appropriate to waive privacy protections for that individual.  Opponents worry the legislation could create a series of privacy issues that violate the rights of individuals living with disabilities.  Caroline is 33, nonverbal and has “severe” autism, according to her mother. She lives in a residential facility covered by a Medicaid Supports for Community Living (SCL) waiver. Kentucky’s waiver gives adults with intellectual or developmental disabilities access to residential supports, vehicle adaptation and more.  About six years ago, Caroline started presenting with “unexplained injuries,” Pierce said, and since then, she’s had 106 unexplained injuries. They include bruises on her legs and arms and a cut on the back of her head, according to photos shared with the Kentucky Lantern.   Caroline “seldom had a bruise growing up,” Pierce said, and medical scans “rule out reasons to be clumsy.” Jeff Edwards, the director of Protection and Advocacy. (Photo provided) Jeff Edwards, the director of Protection and Advocacy, which represents Kentuckians with disabilities legally and through other advocacy, said cameras aren’t a foolproof way to protect people.  “Anyone that’s living in a Medicaid … Supports for Community lLiving waiver slot, they have a team around them,” he said. “There’s a number of people that are with you constantly, that are all mandatory reporters that have the responsibility, if they feel that a person is being abused or neglected, to report it to the appropriate individuals to see that that’s addressed.”  Protection and Advocacy isn’t for or against the legislation, but sees it as unnecessary given the ability to apply for cameras already.  “I think privacy is paramount for people,” Edwards said. “I think we’ve spent a long time (when) people with disabilities have not had a right of privacy, and so anything that protects people and their individual voices are what we’re going to support.”  ‘Overreaching:’ Some worry about privacy, security  Pierce feels the current system is failing her family: “I’ve been trying for six years to get help and can’t,” she said.  Now, she’s asking the state legislature to expand who can install cameras in the types of facilities in which her daughter lives. She wants a law allowing any people living in SCL residential facilities — or their guardians — to opt in for record-only cameras in their living spaces.  These cameras would not be capable of live streaming or any other virtual monitoring, according to a letter Pierce sent to lawmakers detailing the proposal. Footage would be viewed only if there is an instance of suspected abuse, and footage would be periodically erased from the device.  Pierce testified before the Interim Joint Committee on Health Services on Sept. 25 about the legislation Sen. Reggie Thomas, D-Lexington, plans to sponsor in 2025.  During that meeting, several adults with disabilities expressed their concerns about the legislation and its potential to violate privacy.  Corey Nett — with the help of his personal aid, Wendy Cooper — called the proposal “overreaching.”  “I agree … that we need to do everything possible to protect and weed out abuse and neglect cases from our waiver programs, but I must say, I disagree with this bill 100%,” Cooper read from Nett’s prepared remarks.  Nett questioned: “Who’s in charge of the videos? What safeguards were in place to protect the videos if the participant in question is a minor? What about child pornography?”  Jordan Humphrey testified alongside Nett, saying that having cameras isn’t foolproof protection.  “A lot of times, the only place we do have time to ourselves is in our bedrooms,” Humphrey said. “If a camera is there, that means that I don’t have anywhere I can go to be alone. If someone is going to hurt me, I think that they will find somewhere else to do it.”     Pierce pointed out her and Thomas’ proposal would not mandate cameras; it would only allow people to opt in to having them if they feel there is a need.  “The ones that were testifying were verbal, and they could just refuse to have a camera put in their bedrooms,” said Marie Allison, a Lexington attorney advocating for the camera legislation alongside Pierce. “If they’re verbal and they can give an opinion, then they have the right to refuse.”   Thomas is keen to address the concerns in his draft.  Sen. Reggie Thomas (LRC Public Information) “It’s at the option of the resident,” he told the Lantern. “It doesn’t require cameras. …This is not mandatory legislation. It’s optional. It’s permissible, not mandatory.”  In the case of individuals who cannot voice their consent, Thomas said, the bill allows guardians to make that call for them.  While there are concerns to work out in the language ahead of the 2025 session, Thomas said, “there’s no downside in protecting disabled children.”  “There have been numerous cases where disabled (people) have been bruised or abused or harmed while inside the facility, and there’s no evidence of how those harms or injuries occur,” he said. “And parents like Miss Ann Jeannette are very concerned about that.”  ‘An inherent right to privacy’  The Kentucky Association of Private Providers, which represents facilities and providers serving people with disabilities, does not have a stance on this proposed legislation, according to CEO Amy Staed.  Cameras are already allowed in Support for Community Living (SCL) residential facilities, Staed said.  To get those cameras, the state Human Rights Committee must approve them “as they are considered to be a rights restriction,” Staed said.  A “rights restriction” is “any intervention that restricts a participant’s movement, access to other individuals, locations, or activities or rights,” according to Kentucky statute.    “Several individuals in SCL residential settings have approved cameras,” she said. “Because all individuals with disabilities have an inherent right to privacy … and cameras are considered to violate the right to privacy, individuals must work with their person-centered team to request a rights restriction to install a camera.”   Pierce said she has applied for this, but Caroline was not approved.  A Cabinet spokeswoman could not say the criteria on which the committee bases its waiver decisions.  Documents obtained through an open records request also did not provide a clear picture, though they do say any restrictions on a person must be temporary, have clearly-defined implementation guidelines, be paired with educational elements, be removed once goals are met and be reviewed by the committee at least once a year.  The issue of communication  While a person being nonverbal can put barriers between them and clear communication, it’s not impossible, Staed said.  “I think any person who has … worked with or loved someone with an intellectual or developmental disability, particularly someone who is nonverbal, will tell you overwhelmingly that … being able to speak is not required for effective communication,” she said. “People with disabilities who are nonverbal know how to communicate. They know how to communicate their wants and their needs. And staff are trained on the care needs of each individual before they start to work with them.”  Communication can include blinking or moaning and groaning, Staed said.  “Any staff person working with that person will be trained on that,” she said. “But people with disabilities do communicate.”  Caroline has “aggressive behaviors if she’s misunderstood,” Pierce said, and she worries about the ability of staff to care for her through them.  “If she were not too much for one family, she would be living with me,” Pierce said. “It is just hard for one person to keep up with her. You have to have help.”  One of Caroline’s bruises. (Photo provided). Staff at facilities like the one Caroline is in “receive a tremendous amount of training,” Staed said. The “excessive” training includes “their employer’s policies and procedures (which are extensive), medication administration, CPR and crisis training,” she said.  Staff also complete web-based training on direct support, and are individually trained about “the person-centered service plan of the participant they will support.”  In order to reach this point, Staed said, staff have to pass a thorough background check. They cannot be hired if there is any substantiated allegation of abuse or neglect on their record, she said.  ‘Privacy versus safety’  It’s not clear if there is appetite in the General Assembly to modify who can get cameras in their facilities. If it were to pass, Kentucky would be the 15th state to pass such legislation, according to Allison.  Thomas is working out issues in the bill to give it a shot.  “The biggest issue we (have) to work through is how we can limit access to these cameras, because that still hasn’t been worked through on this bill,” he said. “You don’t want peeping Toms or voyeurs having access to these cameras. So, we really have to tighten the reins on who can have access to these cameras.”  Pierce and Allison acknowledged people have privacy concerns.  “This is a privacy versus safety issue,” Allison said. “And I think that, when those two things are balancing out, safety should prevail over the privacy.” The post Kentucky mother wants to expand who can have cameras in residential facilities appeared first on The Lexington Times.