By Steve Flairty
Special to NKyTribune
Ann Jeannette Pierce is on a mission, and she has taken it to the Kentucky State Legislature. She hopes to create a safer environment for people with intellectual disabilities who live in community homes — people such as her daughter, Caroline.
Ann Jeannette, from Daviess County, recently addressed the Interim Joint Committee on Health Services about her quest to see SB 173 put on the 2025 Kentucky legislative agenda for a vote. I attended and was spellbound by her presentation, as it appeared authentic and well thought out.
The proposed SB 173 says that:
“…the parent, guardian, or limited guardian of an individual who is receiving residential services under a federally approved 1915(c) home and community-based services waiver program, as defined in 907 KAR 7:005 sec. 1(2), shall have the right to install, or cause to be installed, video recording devices in the private residential room of the individual receiving services.”
Caroline has Level 3 autism, which, according to the Diagnostic and Statistical Manual of Mental Disorders, requires “very substantial support,” and is not able to competently make decisions on her own. That point is highly relevant to Ann Jeannette’s push for a new law.
The following are excerpts from Ann Jeannette’s presentation, which occurred on the morning of September 25 in the State Capital Annex Building.
Referring to Caroline, Ann Jeannette said that “she watches Disney movies and pushes buttons on children’s music books… most of the day. She is nonverbal. She doesn’t laugh anymore. She cries a lot.”
She talked about Caroline’s circumstances around her placement.
“In 2009, we reached out for help with Caroline. The Supports for Community Living (SCL) waiver (which eased regulatory restrictions on Intermediate Care Facilities, formerly known as ‘state-run hospitals’)) gave her a community home. For almost eight years, she was safe in this setting, with only two incidents—fingerprint bruises to her arms. But for the last six years, since receiving care from her current provider, she has (had) unexplained injuries. Doctors have found no medical reason for this sudden onset.”
But last fall things got worse, she explained. Caroline was found with “a bruise the size of an orange on the calf of her leg. It looked like someone kicked her as hard as they could.”
According to Ann Jeannette, there was a multi-home investigation, and a whistleblower accused staff of locking Caroline in her room.
“Both crimes were dismissed because Caroline can’t tell what happens,” she told the committee.
Caroline has the undivided attention of one staff member 24 hours a day. Ann Jeannette noted, though, that there is no on-site supervision of the staff members. “They can expose Caroline to strangers, and no one will know.”
And recently, Caroline encountered more injuries: blue, swollen fingers, a bruise the size of a half-dollar above her left eyebrow, and a gash to the back of the head. There’s not been much help in resolving these situations.
“These injuries are still under investigation, but nothing will be done because Caroline can’t talk,” testified Ann Jeannette. “Each investigation takes 45 days. They are a waste of time and a waste of taxpayer dollars.”
Talking to oversight agencies has been frustrating, as they are bound by laws that focus on the client’s giving information—yet Caroline cannot give that information because of her intellectual limitations. That said, Ann Jeannette explained that a county attorney, urgent care and emergency room doctors, and the police all give her the same advice, and that is to use common sense and simply get a camera.
“The problem is that SCL regulations don’t allow guardians this choice and don’t allow people to choose this for themselves because of privacy concerns,” she continued in her presentation. “This is not just Caroline’s story. Last year in Kentucky, 97 people were abused or neglected while in the care of private providers. That’s a plane crash. Why is this not on the national news?”
Ann Jeanette emphasized that the data is probably worse because there are likely incidents that go unreported because residents such as Caroline are nonverbal. She cited this statement from the National Council on Severe Autism (NCSA):
We at NCSA hear repeated stories identical to what happens to Caroline. Injuries occur, investigations ensue, and nothing is substantiated because people with intellectual disabilities are incapable of telling their stories or coming to their own defense.
She also mentioned that it is a national problem, as federal agencies have reported similar abuses of those with disabilities in group homes.
“It’s open season on people with disabilities,” she told the Interim Committee. “I’m not saying all community homes are bad. They can be a Godsend. But for some, community homes are isolating venues which make people easy targets for predators.”
A small group appeared after Ann Jeannette’s presentation in opposition to her request for passage of SB 173. Two people with disabilities and a Kentucky Protection and Advocacy attorney spoke, voicing privacy concerns about its passage, saying they would not be in favor of the measure because some with disabilities certainly have the ability to make their own choice.
I later asked Ann Jeannette her response to the group. She respectfully welcomed their participation, noting that the measure makes it a matter of choice for individuals.
“Privacy concerns are important,” she said. “But the right to waive privacy is equally, if not more important, when safety is at stake. Cameras are for recording only and only reviewed when injuries occur. This bill is not mandating a reality TV show, and we, as camera advocates, want to have input from all those who have objections so that this bill will be inclusive of everyone’s concerns. Traditionally, bills do undergo modifications in the passage process.”
Alternatives for Caroline’s 24/7 care needs are challenging. “There are no other community home providers who will accept her,” she said. “I would have to stop working and we would both soon be homeless.” Another option, where Caroline could live at home with state-paid caregivers, requires a special case manager and there are none in the area, Ann Jeannette explained. Another option would be much like foster care, though with Caroline’s needs, it would be difficult for it to work out well.
I asked about the injuries Caroline has sustained over time. Is it possible that with her self-control issues, at least some of them could have been self-inflicted?
“Doubtful that the 3” by 3” bruise to the back of her leg, the gash to the back of her head, bruises to her back, to her buttocks, to the backs of her arms, or two to the tops of her feet are self-inflicted,” she said. “However, if the injuries are self-inflicted, we still need to know why and how this is happening in order to prevent it from continuing. But remember, the fact that she has 24/7 one-on-one care in a small house belies the assertion that no one knows how she is being harmed, self-inflicted or otherwise.”
What are the chances that SB 173 will move forward and pass?
State Senator Reggie Thomas, a Lexington Democrat, says the chances are “better than 50-50,” even though Democrats are the minority party in the General Assembly. “What these parents are talking about is protecting their children who cannot defend themselves… who are incapable of protecting themselves from harm,” he said. “And it still doesn’t cost the state any money. All they’re asking is for parents to pay for cameras in the child’s bedroom so they can see what is going on so their children won’t be abused or harmed or mistreated. What parent wouldn’t want—when your child is staying in a similar facility—to not see what’s going on in the bedroom that’s harming their child?”
Thomas agreed that precautions should be taken regarding the use of the camera “so that you don’t have the peeping toms or people with predatory motives to look at these cameras,” he said. “I think we need to work this out so the cameras are only being accessed by the parents.”
For those who want to learn more, show support or make suggestions otherwise, Thomas recommended coming to meetings regarding the bill and contact Kentucky Legislature representatives. Visit legislature.ky.gov for help.
Also, you may contact Ann Jeannette Pierce via email at jeannettefruge@gmail.com.
I support this legislation and so should everyone else.
I strongly support this legislation. Every decent citizen needs to support this legislation.
This is not just a KY nor a national problem. Its an international problem. It also happens here in Canada. Particularly so for the severely disabled who are considered ‘legally incompetent’ – those who cannot protect themselves.
As for concerns of privacy – those who can communicate their concerns or have their guardians voice concerns who in most cases are able to self-advocate, must not be housed with those who are highly impacted who cannot protect themselves from others – from both group home staff and group home residents who can and sometimes cause harm to the severely disabled.
VDO monitoring & recording needs to be everywhere in the group home, not just the bedroom (other than the bathroom) where neglect & abuse can happen, away from the public eye.
Its about common sense & common decency, and about truly sincere use & accountability of the charity of the state. Decent charity funded by taxpayers to help those who by great misfortune of being severely intellectually disabled, who need 24/7 care & protection. Not just to give caregivers a job or enrich the few who own & operate group homes.
VDO monitoring & recording must also be considered for care homes of seniors of advancing dementia so that decent care & treatment is assured.
Lets have and assure a lot more common sense & decency.