A mutual friend introduced me to Mark Gale shortly after my son had his first mental break — the one that ended up with him being arrested. Mark’s son also had gotten into trouble with the police. As two concerned parents we immediately connected and, in our own way, took action. I decided to write my book, CRAZY: A Father’s Search Through America’s Mental Health Madness. Mark jumped right into NAMI. Occasionally, we would see each other at NAMI conventions and I always admired his dedication to NAMI and his determination to help his son and others with mental illnesses.
Mark sent me an email after he read my blog about The Changing Face of NAMI and I asked him if he would share his thoughts in a guest blog because NAMI plays an important part in his life.
Pete,
Thank you for writing your article about NAMI and its present posture on issues regarding voluntary and involuntary care. The mental health community is paralyzed and polarized by the ridiculous conclusion that if one is for the former, one must be against the latter.
Those favoring only self-determination continue to perpetuate the fantasy that an outpatient system that has been unable to engage a huge number of mental health consumers will eventually be successful despite past failures. We know that there are some individuals who will never engage without a different structure and some level of intervention. This is the basis of mental health courts, but must we only use the criminal justice system as the gateway to treatment for this more challenging population?
We essentially have a voluntary-only outpatient model and an inpatient acute/sub-acute model for those in crisis where, and if, available.
The results are in. The status quo is indefensible. Many individuals continue to come to harm regardless of multiple outreach attempts by our outpatient system, and without some level of intervention will end up in jail, prison, homeless, or dead. Despite the obvious, there are those who claim fidelity to a philosophy of “total self-determination, no matter how high the price.” There are also those of us who say that price is sometimes far too high.
The current paradigm results in many of our most severely ill individuals becoming collateral damage in protection of someone else’s ideology. Current laws and protocols, in effect, allow our states and mental health systems to pick winners and losers. We need programs, laws, and protocols that work in the real world, not ideological positions.
Unfortunately, while the mental health community, including NAMI, espouses the politically correct language of recovery, wellness, and resiliency (which I fully support), people in crisis on the lower rungs of the recovery ladder, who are unable to drive their own treatment and embrace these concepts, continue to be given yet another chance to come to even greater harm.
NAMI and our community must take a stronger stance in advocating for this more seriously ill population–all year long. The percentages of people with serious mental illness in our jails and prisons, or left homeless on the streets of our country, are not declining as unacceptably large numbers of people continue to be criminalized. This undeniable fact should establish that there is a more difficult population that will not engage under the current outpatient system and without a different structure, such as Assistant Outpatient Treatment (AOT), and in more extreme cases of grave disability, conservatorship.
Our steadfast support of Crisis Intervention Team police training and mental health courts is right on the money, but there is much more we can do.
NAMI has become so afraid of divisiveness over these issues, it has chosen simply not to deal with them and move on. How easy it would be if I felt that advocating for only recovery-oriented services was all that was necessary? But I didn’t choose my advocacy positions, my life chose them for me.
NAMI’s public policy platform (see Section 9, Legal Issues) is the best description of an appropriate and respectful policy I have ever read. It is too bad we won’t live by it and honor it by standing by it. Our silence on Assisted Outpatient Treatment, for example, is deafening.
What needs to happen, instead of family members and consumers taking different sides and going to war, or splitting apart the organization that we all love and cherish, is that all must agree that there are consumers living at very different levels of recovery who need all levels of care.
Treatment for all!
One is not right and the other wrong. If one needs inpatient care, it should be delivered in the most humane and caring way possible. Sub-acute care should be available to all those who need longer-term residential care and treatment before moving on to step-down programs in the community. AOT should also be available to reduce criminalization, stigma, and reduce the numbers of conservatees and people in need of acute inpatient care. AOT can also help prevent some of the terrible tragedies that too often occur and inflate the stigma we all work so hard to diminish.
The sole purpose of intervention is so individuals can stabilize and move forward with their personal recovery process with the goal of transitioning to the outpatient system in the future. All of us advocate for a stronger outpatient system to help as many people as possible, exercising their self-determination, without the use of intervention and to reduce the numbers of those who do need that level of assistance. But to stop there is not only unacceptable, it’s not working!
NAMI should continue the conversation that was so articulately stated in the film “Minds on the Edge.” That discussion should have been the beginning of this dialogue, not the final chapter. I became a NAMI member and advocate because I found an organization that was pro-treatment for all – no matter the circumstances. NAMI advocated for everyone! As this mission becomes more and more diluted, and we forget the lessons of our founders, I become more disenfranchised and disappointed in our great organization. It saddens me. Let us state with absolute clarity who we are and what we stand for. Instead we nibble at the edges of uncomfortable topics.
Yes, we should always advocate for recovery, wellness, and resiliency. However, we must never forget about those who are not yet ready for that chapter of their journey.
And let no one be cast aside because their circumstances don’t fit into the more comfortable politically correct box.
Mark Gale
NAMI San Fernando Valley, Member & Past President
NAMI California, Past Board Member
California Treatment Advocacy Coalition, Co-Coordinator
March 31, 2013
About the author:
I appreciate Mr. Gale’s response and agree that the status quo is unacceptable. I had to move on from NAMI because I could not tolerate the depth of their betrayal to those consumers and families who were not wrapped in anything except blame and shame. That is especially the case in California where the waste and bureaucratic bungling of billions of dollars from Prop 63 have only prevented those with contracts from intervening in unspeakable human carnage.
NAMI California rakes in the millionaire’s tax and promotes help after crime or crisis. While the California jails fill, hospitals and ERs are at capacity and parents back bedrooms still hold our loved ones, NAMI has refused to lead “treatment for all.” NAMI California lost its moral compass and NAMI National has not course corrected.
The divisiveness didn’t have to happen and it can end. There are ways to put egos aside and lead. There can be strong partnerships with families, consumers and providers if we refuse to give up on our most vulnerable. I have seen it happen and know that it is possible. Its time for new family leaders and a new voice for all to join the efforts of Treatment Advocacy Center and lead us out of this insanity.
I have a son in jail who and a brother who lives independently barely surviving. Both with severe mental illnesses, brain disorders that are unique and different and require individualized medical care. No boiler plate wellness plans. I have parents in their eighties who don’t know what will happen to their first born son when they are gone. They grieve for their first born grandson who has been lost in the political shuffle of California’s human shell game. Which one gets picked for recovery? I choose both.
I am a family survivor and I know many who are not going to settle. We are going to speak up for all and end the fiscal and human waste of recovery by chance.
Best advocacy letter EVER! As a parent of lived experiences (and an active NAMI member), I want to thank Mark for writing a concise review of the gapping paradigm/resources and for sharing his opinions of our beloved, aging, and ever-increasing toothless NAMI.
As always, thank you, Pete, for sharing great advocates and ideas.
Can we focus on care for ALL without having to use scare tactics and hyperbole that create their own danger for our family members? That’s what I’m fighting for.
Thank you, thank you, Mark Gale, for this very clear and powerful explanation of what needs to happen.
Mark is clearly one of the leaders in the campaign for AOT implementation. As a NAMI member for over 15 years, I have always supported programs that help the most seriously ill get treatment and embrace it as a moral obligation of our government. Our NAMI affiliate strongly supports AOT and was one of the sponsors of Laura’s Law in California. We see it as part of our mission. Because of the 4+ year advocacy efforts of MH stakeholders in our county, AOT implementation is now being considered by our county supervisors.
Mark – you expressed so well the concerns of many of us family members whose only hope is to see our loved ones living a happy, healthy life. NAMI should be willing to speak out in support of individuals who are harmed by our current mental health system that only provides treatment if a person is able to ask for help. I wish I could be more optomistic about NAMI’s future, but I don’t believe they will go back to their original goal of supporting those with severe mental illnesses who may need a short period of time in assisted outpatient treatment just to find that road to recovery.
Awesome letter. I wonder if Mark would like to advocate at the national level with in NAMI. His perspective could be ‘the voice on mental illness’.
Terri
All calls from pro forced drugging NAMI parents will fail. We will not submit to your human rights abuses without a fight. You can already see you are losing the war against our civil rights. Pro human rights people will continue to take over NAMI and push the people who are against human rights out. There is nothing you can do. You are fighting a losing battle. Anybody in favor of forced drugging will be systematically purged.