Tracking The Tragedies And The Prop 1 Votes. Is Anyone Winning?

Prop 1 is hanging on by a thread. It's?another 50.1 to 49.9 showdown in our country. Health and care have become a gladiator sport with ideological warfare being used to blame and shame everybody. New laws and lawsuits are forcing us all to put down our weapons and find solutions, together.? But will we drop the weapons or just keep fighting? We need leaders, not warriors, to fix this mess. We are wasting too much time, money, and lives by fighting to maintain the status quo. And, it is not a fair fight.?

There were various reasons reported for the opposition to Prop 1. But, much of the reporting has lacked the perspectives of why families like mine support it. Some reporting has been biased, incomplete, and lacking the facts that families know.

Families know the gaps across the continuum of care better than many of those considered experts because of degrees or lived experience. The voices of families like mine should have been elevated in the Prop 1 reporting and the Governor’s Yes On 1 campaign. We have lived the experience of learning every jagged edge of every broken piece of multiple systems. We are the underdogs and the unfunded staff. Nobody knows what we know.?

We know that Prop 1 is about more than homelessness and housing. We know it's about more than building a system of “beds” for gravely disabled populations who are unhoused or inappropriately housed. We know it's also about building public trust, and safety net systems for people whom many taxpayers don’t care about. Families know that we can help people care.

We often know more than many behavioral health directors, medical directors, public defenders, district attorneys, executive directors, CEOs, legislative staff, lobbyists, and patient’s rights advocates.? We have to know a lot and have had to learn to connect the dots to help our loved ones live with their rights on. California "stakeholders" must stop treating families like mine like idiots and adversaries.?

We are told that the criminal justice system is an adversarial system based on the administration of justice. Some people defend it. I can’t. It has become unnecessarily adversarial with gross conflicts of interest at every stage of the civil and criminal justice system that pits families of gravely disabled adults against everyone, including their loved ones. SMI Families have no rights except to provide information that can be ignored.?

This article posted in the California Healthline started a conversation among families like mine last week. Those of us who have been tracking the? Coleman and Brown v Plata cases know that they have been effective in forcing the state and counties to create more humane solutions in response to the constitutional crisis in jails and prisons. However, the settlements and plans have not produced measurable and sustainable results for the SMI population on the inside or the outside.?Transparency and trust are lacking along with access to appropriate beds for re-entry or diversion. We know it's complicated.

Jails and prisons are still the ONLY places where our SMI/SUD loved ones have a right to treatment in California. Once care for the SMI population was carved out and "realigned" to the counties, they got lost. 1991 and 2011 Realignments have not been successful state or local plans for the most ill and vulnerable SMI/SUD populations. ?

1991 Realignment was a necessary financial gimmick at the time but failed to adjust for the growing needs by providing services “only to the extent resources are available” for the most severely mentally ill WIC 5600.3 populations. Those resources are prioritized for various populations who have entitlements like the IDD community and foster youth, both vulnerable populations who very much deserve the right to care.?

However, there is no entitlement for the SMI/SUD population and no appropriate continuum of care to prevent the gravely disabled from being failed, jailed, treated, and streeted.?The parity disparities are killing our loved ones and families.?

The 2011 Realignment failed the severely mentally ill population by focusing on the mild/moderate SMI population that MIGHT be able to get well outside of a cell and navigate the so-called system on their own.?However, those who needed more support and ongoing medically necessary treatment were left in solitary, abandoned to the streets, poorly funded/staffed programs, or to their families.?

Not everyone can thrive in an FSP(Full Service Partnership) or even with family support. And, those are the standard discharge plans in California for the SMI population. Two "A" words, anosognosia and appropriate placement are too often ignored along with medical science and family information. So, people with psychotic disorders, anosognosia, etc. just rotate and recidivate with endless "outreach and engagement" but no clinical or collaborative court interventions. They fall off the cliff again and again until they die.?

And, families like mine just keep hoping that we will live one day longer than our gravely disabled loved ones.?Too often we don’t. But, when we do, we suffer knowing what we or “the system” did or didn’t do.?

This Cal Matters piece rocked my heart last week. What a local, state, and national disgrace this story tells. This woman didn't stand a chance in the community without being in a Housing That Heals facility, like the one where my Danny lives. I believe Psynergy would have managed to care for her co-morbidities?better.?Maybe she wasn’t in the APPROPRIATE least restricted level of care.?That happens too often.

This DRC report came out this week saying that if we just had fidelity ACT/FSPs and? non-congregate settings then LPS Conservatees could be discharged from "institutions." But, discharged to where and what? Wherever they "choose?" Is that logical for all LPS Conservatees or all people leaving hospitals, jails and prisons? Can they all live safely, with their rights on, in small board and care homes that are grossly underfunded and disappearing? See this Coro Foundation Report to understand the housing crisis that families like mine have known about for years.

I agree with some of the DRC recommendations but their one-size-fits-all approach is not civil or right for too many who cannot make safe choices without risking their freedom or lives.?Too many end up “stuck” in solitary, graveyards or cremated against their wishes. And their families are left stuck in endless suffering.?

The game of risk and rationing is failing. Too many beautiful minds and people are dying with their rights on because they aren't "gravely disabled enough."?Like this young woman?and many others described in the Tracking The Tragedies campaign. Too many families are left with tombstones.?Will the Care Act and SB 43 help? Possibly, but not without the right beds providing the right care. And, not without families like mine authentically included in the implementation.

The SMI human log jams on our streets, in jails, prisons, acute psych hospitals, IMD/MHRCs, and elderly parents' back bedrooms will keep getting longer while we play political poker about “beds.” Even with billions currently spent on "beds" we haven't figured out how to scale up access to a complete continuum of continuous quality care that is safe and appropriate.

That was the goal of our Housing That Heals paper. We envisioned BOTH a quality hospital AND a community-based continuum of care for?the gravely disabled, SMI/SUD populations.? Families don’t want coercive care. We know that beds are just mattresses, not homes. But, we also know that some people need medically necessary treatment to get unstuck and live with their rights on in safety and health. That’s what Prop 1 is supposed to help make happen. ?

Maybe if we stop fighting long enough to focus on eliminating the drivers of despair and disparity, we will move from “scarcity to abundance.” Maybe we will save lives, money, and possibly our state's soul.?Maybe we will all win.

Whether Prop 1 passes or not, we will need leaders who will not let our most vulnerable SMI/SUD populations suffer on the streets, in jails/prisons, in hospitals, or the back bedrooms of elderly parents’ homes. We will need leaders who will listen to medical science and the families.

Families like mine are tired, frustrated, and angry. But, we don’t want to fight to the death of anyone.? However, we will never, never, never give up. We will keep pushing on the status quo that is producing harm, not preventing it.? We will keep seeking solutions while tracking the tragedies until there are equity-based SYSTEMS that provide the right care at the right time and place for ALL. Families like mine are leaders and partners in care. We are “us” too. Nothing about us without ALL of US!