Healing Minds NOLA is honored to have been asked to participate at the 2020 Virtual SARDAA Conference. Archived videos from the day can be found here. We urge you to watch them all!
Below is a transcription of opening comments prepared for the Criminal Justice Panel by our founder and director Janet Hays.
“Hey everyone, I’m really honored to be invited to this criminal justice panel where I discuss why I advocate for schizophrenia to be reclassified as a neurological brain disorder.
The inhumanity of excluding people living with serious mental illnesses hits home hard for me these days. The COVID-19 crisis is not unprecedented. New Orleans went through a complete system shut down after Hurricane Katrina hit and the levees broke. Hospital beds are precious commodities in our ghost town that was a thriving city just 3 weeks ago. And those with serious neurological disorders wander the streets ostracized and discriminated against by the mental “health” systems that we build and a society that has determined they have no value.
My advocacy began in January of 2009. I got a call from someone who let me know that my friend Cayne had died on the 10th floor of the House of Detention, the now replaced decrepit Orleans Parish jail, after 5 hours in five-point restraints. Cayne suffered from asthma, panic attacks and serious chronic depression. She sought help at a private hospital that had her arrested when she became combative as a result of a new medication. The sheriff said she was trying to kill herself.
That day, I switched from being a footloose and fancy free audio engineer from Canada to fighting for justice for a community that had become my family. A community rich in culture, history and charm and, unfortunately, poverty. Cayne and thousands of people like her were shut out of care in the Katrina panic of 2005 due to the intentional closure of Charity Hospital, our largest and oldest public Hospital in the state.
The hospital had 128 inpatient psychiatric beds and 50 crisis stabilization beds. To this day, those beds have not been fully replaced.
Having gone from approximately 200 psychiatric beds to zero overnight, we saw a huge uptick in people with serious mental illnesses being funneled into the criminal justice system and encampments under a downtown overpass. Locals just say, “under the bridge”.
As I got more involved with the issue, I learned that Cayne was just one casualty of many. A New Orleans police officer and her 8-week unborn child were shot and killed with her own service weapon by a treatment non-adherent man who had been cycling in and out of psychiatric hospitals for years. After that, we got to work on our assisted outpatient treatment law, Nicolas Law. Seen as an unfunded mandate, it sat unused on the books for 10 years.
And these tragedies continue to happen.
The hospital sat vacant for years. In 2015 Governor Jindal put out a request for information. I sent in a proposal to adaptively reuse the million square foot building as a ‘one stop shop’ mental healthcare and research center of excellence. It would have provided needed auxiliary psychiatric beds, crisis stabilization beds, transitional residential treatment beds, outpatient programs and services, vocational training, research and so much more.
I needed to submit the proposal under the name of an organization. To make a long story short, that’s how my nonprofit was born.
Later I attended a speaker series in Baton Rouge where they brought in such luminaries as Judge Steven Leifman, a personal hero.
When I heard Judge Leifman speak about the diversion center they were constructing in Miami Dade County I could barely sit in my seat. I couldn’t believe he had stolen my idea! Of course it wasn’t my idea, it was simply an idea that’s time has come.
It got a lot of attention. People asked, how are you pay for it and how are you going to fill the space? It led me down another rabbit hole of research to find a way. I connected with many of you on social media and DJ Jaffe who runs mental illness policy org. I contacted representative Tim Murphy‘s office to ask what was in his helping families and mental health crisis bill that would help support our ‘one stop shop’ proposal in New Orleans. I was so impressed that they didn’t hang up on me even though I didn’t have a Pennsylvania ZIP Code. I discovered the Treatment Advocacy Center, now our national partner.
I soon realized that in order for my ‘one stop shop’ idea to happen, other things also had to happen, like policy changes and funding redirection.
For a while I fought without much success, but when I began educating stakeholders on serious mental illnesses as neurological brain disorders, I found traction.
I began an assisted outpatient treatment court with a judge who I knew. I worked with the Orleans public defender’s office to help them start up their mental health unit. I am working with the Orleans behavioral health Council on creating bench cards to educate judges about the differences between substance use disorder, serious mental illnesses, and co-occuring.
I am working with a developer who is on the board of the Pew Charitable Trusts that got the contract to do the justice reinvestment initiative in Louisiana back in 2016 – a statewide effort to reform our laws to reduce our jail and prison population and reinvest savings into preventing recidivism. But what about not coming into contact with the criminal justice system to begin with? I finally convinced him that serious mental illness is a driver of incarceration.
We formed a group that is working on an alternative plan to a proposed mental health jail. The goal is to divert and deflect people with serious mental illnesses – including people with histories of violence and deemed a security risk – to programs and facilities under the jurisdiction of psychiatrists and mental health professionals, not corrections officers.
I am working with a doctors group who are looking to revamp our involuntary civil commitment law including adding psychiatric deterioration as a criteria for involuntary treatment.
Last year I partnered with the supreme court of Louisiana and the Louisiana district judges association to launch our first annual conference to discuss implementing a full continuum of coordinated psychiatric treatment and care with a focus on serious mental illness.
Senator Cassidy and I are partnering on hosting a HIPAA seminar this summer that will bring together Covered entities and families to tease out gaps in the HIPAA rules that might turn into new legislation.
Through all of those efforts, I continue to work to build up relationships and form collaborations to get people in the same room together, to talk to each other, to listen to each other, and to understand each other.
It hasn’t been easy. There’s been much resistance along the way.
I was told AOT doesn’t work and would cause more racial discrimination and incarceration.
I was told the District attorney would never support the program.
And, as you can guess, those who have lived through the long and grueling dismantling of psychiatric care for people with neurological brain disorders scoff that we will ever re-classify schizophrenia as a brain disease.
Well, we now have an Assisted Outpatient Treatment program in New Orleans, that we began with no funding, and then we got funding.
I met with the district attorney who has absolutely no obligation to represent people without charges. I have to say he was a little confused when I asked for his help with legal representation in a civil court, but by the time I left his office, he shook my hand and he said what you’re doing has been needed for a very long time. I will help you, where do I start?
The naysayers were excited about the news that broke early last year on efforts to reclassify schizophrenia as a brain disease.
And, we will get our mental health center alternative to a mental health jail – because, it’s time.
At times advocacy is exhausting and discouraging but looking back I see the progress that we’ve made. We have a long way to go but what keeps me going is knowing that there are people right now with serious brain disorders, who will spend a lifetime in prison – unmedicated and kept mentally incompetent – just to avoid execution. And the fact that they got there because our mental health laws said that they had to be dangerous, is why I keep fighting. If there were ever a definition for torture, that is it.
Every time I tell someone what I do, the response is almost always that they have a family member or know someone who is struggling with untreated or under- treated serious mental illness. There are many people who walk among us every day who are waiting to tell their story. I want to say to people watching, reach out to them, educate them, talk to them. It’s not always about the numbers and the data. Although, that is very important. Sometimes it’s just about the heart.
Thanks for listening, thanks to all those on the front lines who can’t be here today, and thanks to Linda Stalters and SARDAA for inviting me to speak. Keep fighting!“