The announcement of a Tennesseean leading NCSA’s charge for reform was timely, as it came simultaneous on the day Jillian’s Law went into effect in Tennessee. The law was born in reaction to the tragic killing of Belmont University student Jillian Ludwig, who was shot by a stray bullet in 2023 by Shaquille Taylor. Taylor previously had been arrested for another incident and found unable to stand trial, but doctors didn’t consider him a danger to himself or others, so the judge had to release him — leaving people to wonder, “Had Taylor received appropriate support and services he needed, would Jillian still be alive?”
In response, the Tennessee legislature passed Jillian’s law which requires that if someone is unable to prove mental competency to stand trial, they automatically must be sent to a mental health facility. One might think, “If they’re a danger to themselves or others, a mental health facility that can provide appropriate stabilizing treatment is exactly where they should be, no?”
They are confined indefinitely, without due process — no speedy trial rights, no timelines, and no option for the judge to release them. Under the new law, they are held until they can prove competency to stand trial, or until they can find access to a treatment facility that can rehabilitate them and assure they are no longer a danger to themselves or others.
There are three fatal flaws in the law, as enacted.
There is no carve-out (no exception) for people with profound disabilities–people who require round-the-clock care, assistance with all or nearly all activities of daily living (e.g. toileting, bathing, etc.), and lack the cognitive or communicative capacity to advocate for themselves.
Tennessee does not have the capacity to provide mental health treatment to all who need it now, before the tsunami of court-mandated placements coming. Having no mental health facilities available is also not a carve-out. The judge must confine. Off to jail they’ll go, regardless of their disability and level of care.
The fiscal note was grossly understated at only $2 million for the entire year for the entire state. Nick Leonardo, NewsChannel5’s Legal Analyst, told reporter Chris Davis that Davidson County (Nashville) alone could use the entire budget in only one month.
Since 2016, the only waiver option people with severe autism and related disorders have had access to is the ECF CHOICES waiver, one that serves thousands in the state well who have goals of competitive integrated employment but leave this population often sitting years without access to even a single hour of staffed services.
My own daughter was denied admission to every hospital in this state when I was desperately trying to get her treatment. She waited two years on a waitlist 800 miles away until she was eventually archived from that list and never did go.
Jail is not the place for someone with developmental disabilities, not anywhere, and certainly not in Tennessee. While most the news coverage on Jillian’s law is referencing the challenges in staffing and facility availability, none are discussing the problem of those individuals who are refused care by hospitals even when beds and staffing are available. Where do they go? A lawsuit was recently filed by the family of an Overton County man, who died while in jail custody during an attempted restraint. He had committed no crime. He was only there because it was hospital protocol to board mental health patients in the jail. The jail claims there was no wrongdoing.
I have been urging the state to resolve crisis care for years. I hosted a webinar with NCSA two years ago on it. I helped develop IDD-specific emergency department protocols. Nevertheless, this January, I shared yet another awful encounter when we tried to access care at our local hospital. I reached out to state leaders urging to resolve huge 14 county blocks that lacked any CIT training for police, but I was largely disregarded. Months later, during the most recent Statewide Planning and Policy Council meeting, as I sat advocating to fill the gaps for unmet needs, my daughter went into crisis at school, two hours away, and no safety nets existed. Parents of children with profound autism live in a constant state of fear, and it’s not imagined, nor is it hyperbolic.
I felt like I was crumbling the day she turned 18, knowing that she was at an increased risk at that point of being incarcerated if someone in public misjudged a behavior episode. A month before her 18th birthday, a director in my daughter’s MCO (managed care organization) that manages the ECF waiver told me to create a power of attorney form. I asked how that was even possible if I knew she was not competent to sign. “Oh, but that’s just it! She is! The day she turns 18, in the state of Tennessee, she’s a legally competent adult until and unless a judge signs otherwise,” she said proudly, like she had just solved all my fears – not realizing I was more terrified than ever after that.
A fortune spent was well spent (so I thought), as I was granted a permanent conservatorship. “Now she’s safe, at least from jail. A judge has signed she’s incompetent. They’d have to release her, not hold her waiting to prove she’s not competent to stand trial,” I believed.
Jillian’s law changes everything.
I am petrified to take her into public now with Jillian’s law. If she has a behavior episode in public, she could be arrested, and people like her won’t be going to a mental health facility – they’ve already denied her access to any of them. Our facilities consider my daughter “too severe for treatment.” She will be in prison.
She requires assistance with all ADLs. She rarely pronounces her full name, “I den!” She can not read, sign her name, nor advocate for herself reliably. She can not protect herself from harm – by others or herself. She doesn’t understand she would need to protect herself. She hasn’t met the dark parts of human depravity to know they exist. She still finds incredible joy in catching raindrops on her tongue and in exploring all the colors of the rainbow. She would never be around a gun, nor have the capacity to have intent to harm someone. She has never held a gun. She is not in the population that the spirit of Jillian’s law intended to protect the public from, but she and others like her are caught in its poorly-written broad net. “Petrified” feels like an understatement.
People in the general public often say, “but they can’t do that.” They can. They do. They will. Shantel Taylor, mom of Kai’Yere Cambpell, has been an outspoken advocate providing us a glimpse into the ghastly experience of someone with profound disabilities being confined in jail. Tennessee parents have watched closely, shaking with fear.
There are many of us all across the state – one unyielding appalling account to another of how the system failed our children at every level.
“I have not had one hour of services in four years on ECF,” said a mother of an adult with Charge Syndrome and profound autism.
“I have been unable to find a qualified permanent full-time in-home caregiver for my daughter since March 9th,” said a mother of an adult with SynGAP1-related disorder and profound autism, posted this week.
“My daughter with an IEP and a Behavior Intervention Plan, was arrested in our home, while calm, hours after supposedly having ‘an incident’ on the bus with staff who instead of helping my daughter, decided to file charges against her,” said a horrified mother of an adult daughter with profound autism.
“Just wait until the agencies and group homes can get rid of their high acuity behavior clients for a long time or permanently by calling police and entering them into the justice system,” said a concerned mother of an adult son with profound autism.
“We were advised multiple times to take Josh and ‘drop him off’ at an ER department and let the state take custody. We were also told to get a divorce, because ‘it’s easier to get help if the parents are separated.’ Needless to say, we didn’t want to call crisis after some of the interactions we had,” recalled Vance Goforth in his inaugural post of his page A Voice for Joshua.
A Problem for All Ages
Disability Rights Tennessee also filed suit this past week against the Tennessee Department of Children’s Services (DCS), claiming unconscionable abuses against children with disabilities. The sad reality is many children in DCS aren’t there because they come from broken homes but because of the broken waiver system that provides no appropriate resources for loving families to keep their children at home safely.
When my daughter was a teenager, our ECF coordinator advised us to place her with DCS “voluntarily,” claiming DCS could get her services. Thankfully, I refused. My heart breaks for the families who made that heart-wrenching decision, under the guise that it would help their child, just to then find out what their child endured, like the 12-year old autistic boy hog-tied in a DCS home last December.
Last month, Ben Hall of NewsChannel5 broke the story that the state had sent letters to parents and conservators that they were “decommissioning” high-support adult homes to make room for the DCS crisis. The state continues to deny publicly that it plans to evict adults from those homes. Be certain, those statements won’t age well.
Another “solution” to the DCS crisis rolled out this past year called TN Strong Families. For the most part, it is actually a wonderful program that aims to incentivize more foster families to take in children with disabilities. It provides an extra $20,000 for the foster family, to be used in a similar fashion to the Katie Beckett program. If the child moves to another foster family, the money follows the child. If the child reunifies with the parents, the fund rolls back to the state, and the parent is not provided any of the extra support strangers received to help their child.
Does anyone else see the problem there?
For these reasons and many more, I don’t think any of us were surprised when the AARP ranked Tennessee dead last (51/51) in its 2023 LTSS State Scorecard for family support.
The DCS crisis won’t be solved by “decommissioning” high-support adult homes, especially now that they are more at-risk than ever of being incarcerated due to Jiillian’s law. The solution is prioritizing family support above all else. The VA solved its crisis, in large part, due to investment in the innovative Program of Comprehensive Assistance for Family Caregivers. We don’t have to reinvent the wheel. We can simply learn from them and fashion a similar model that applies to HCBS.
We need innovative housing solutions, multidisciplinary care, and services that provide safety and supervision support. Our children have symptoms of disability that can be safely managed with appropriate support. They can lead meaningful lives filled with joy with appropriate support. In a state that has so grossly failed to resolve its crisis in crisis care for severe and profound autism, the refusal of carve-outs for disability in this law is cruel and unusual. The state’s own lack of response to the unmet needs of this population is the cause of harm. Disability is not a crime or a choice.
Incarceration certainly is less costly than the specialized services people with profound autism require, though, right? At least say the quiet part out loud.
Until the state regains some sense of humanity, parents like me, we’re holding our kids close and left wondering, “Is it even safe to live in Tennessee if you have severe or profound autism?”