Mothers of Loved Ones with SMI are Tied Up in Nots

Last month, I had the privilege to sit in the Zoom room with yet another group of heroic women who are finding their voice sharing very personal stories about how the American mental health system has destroyed lives.  Their report, issued in March 2021,  is titled The Failures and Solutions Official Report.  They call themselves Mother Advocates for the Seriously Mentally Ill, Los Angeles County.

One of the authors of the Mother Advocates report has also published her own memoir with the hope it will influence legislators and policy-makers

As I read their report to prepare to meet them, I was overcome with a sense of heaviness and deep sadness. 

They underscore what so many have asserted: “…there is no part of the mental healthcare system which runs efficiently.”  (P. 3 of Failures and Solutions report)    As I have written before, I have yet to meet a person who has encountered the American mental health system – be they a consumer, a family member or one who works therein – who defends the system as anything other than broken. 

I’m thinking this mom’s movement has the potential to gain momentum, just as other mom’s movements have made a difference.  We’ve all heard about Mothers Against Drunk Driving and Moms Demand Action Against Gun Violence.   This mom’s movement is searching for a name and a unifying strategy to  link arms across state lines to find its national voice.

Mom’s I’ve Met

Every mom I have the honor to meet on this journey makes an indelible impression on my heart.  In the first season of the Heart Forward podcast, I was privileged to interview the Moms on a Mission, Lauren Rettagliata and Teresa Pasquini.    

I also interviewed Mimi Feldman, a mom who lived just up the street from me and wrote a book about her son Nick.  Two weeks ago, she and Nick were featured on ABC news.  

I invited another mom, Susan Levi, to write about her daughter in this blog in late 2019, Mommy, please don’t ever let that happen to me again – Accoglienza: lessons for America .    I also have tracked down the  moms of people I have encountered who have been homeless in Hollywood or elsewhere in Los Angeles.

I wrote a few months ago about another recently published book called Tomorrow Was Yesterday – subtitled as “Explosive First Person Indictments of the US Mental Health System – Mothers Across the Nation Tell it Like it Is.”  It was compiled by Dede Ranahan and shares the heartbreak of 64 co-authors.

I follow one mom on Facebook;  her site is called Our Broken System and sometimes I just cannot bear to read the updates on her FM (family member) because it makes me feel so sad and helpless. 

I met another mom at a NAMI conference in Denver in 2016 who approached me when she heard I worked in Hollywood.  She gave me a picture of her son for whom she has filed multiple Missing Persons’ Reports with the LAPD.  She periodically flies out to LA and drives the streets of Hollywood and neighboring communities looking for him.  Her son David was diagnosed with schizophrenia in 2008 and denies he has a mental illness and he has been chronically homeless in Los Angeles since 2015. 

The Voices that are Not Heard

The moms speak up (and dads too) because their adult children are not able to organize themselves into a coalition.  They are not able to travel to the county board of supervisors to wait a couple hours to testify.  They are not aware that there is a county board of supervisors.  They are not able to log into a  Zoom to provide public comment on the county’s strategic mental health plan.    They may not even have a computer and, if they are living in a psychiatric facility, they are not allowed to use their cell phone.     And even worse, if they are in jail, they may not understand how they arrived there and what lies ahead.

Of course there are dads who care deeply also and Crazy by Pete Earley was one of the first books I read on my journey to understand this complex issue

The moms speak up (and dads too) because often they are not able to even find their loved ones.

There are marvelous stakeholder groups, and peer-run advocacy groups who do have an effective voice, but they are not inclusive of the voices of people with serious mental illness. If I am mistaken on this front, please correct me. 

The only nonprofit entity I have seen that has the potential to create space for people with serious mental illness is the clubhouse.   The values of the clubhouse model contribute to inclusion, empowerment and agency (and that is why we will have a clubhouse in Hollywood.  Heart Forward LA is committed to this goal.)   

Tragically, when family members (or friends) try to advocate on behalf of their loved one,  they are shut down or shut out.  Frankly, I cannot think of another “interest group” in America who is more voiceless than our brothers and sisters struggling with serious mental illness. 

How do we come alongside the moms?

On this Mothers Day, I post this to show solidarity with the moms (and dads) who have suffered so much in their battle to help their sons and daughters.  So many worry about what will happen to their family members when they die and are no longer around to go to bat for them.  It is not enough to set aside  resources or name your child in your will.  How does one guarantee safety?

I am open to brainstorming here.  How do we come alongside the moms?  How do we link these intrepid mom coalitions that likely exist in every state?  How do we turn this into a movement?  How do we forge the pathway to give voice to the voiceless? 

On this Mother’s Day – let the conversation begin.  And let’s set a goal that by next Mother’s Day, something significant has started.

26 thoughts on “Mothers of Loved Ones with SMI are Tied Up in Nots”

  1. we needd to make a huge march, to be loud, including every organization possible.
    First, to get the population ‘s awareness, for example to look at an homeless person as someone’s son, to get political attention
    2, to alert of the domino effect on our society; it is an individual tragedy, affecting the whole family and eventually the whole American society.

  2. All I can say Kerry is I agree with every word you have written. As a fringe-dweller, I look forward to being a part of the solution. I am excited about a clubhouse in Hollywood. I will be brainstorming interest group and coalition ideas for this important movement.

    1. Thanks Alia — I so appreciate your heart for this and your willingness to help. And we need more clubhouses…Hollywood can be a start, but we need them all over L.A. County. KM

    2. one caveat regarding clubhouses: be careful not to allow profiteers to strip the comprehensive treatment model that they should provide down to something that becomes more like a modern day work house. Make sure they don’t exploit vulnerable people for cheap labor plus additional profit from supposed “supported work services” While helping people rehabilitate to a point where they are able to engage in meaningful and fulfilling work that helps improve mental health is laudable, mere work for work’s sake could add unnecessary stressors that could actually jeopardize mental health.

      1. We hope to stand up a Clubhouse in Hollywood. In two weeks, “team Hollywood” will participate in a week of virtual training with Clubhouse International to learn from those who have years of experience in this space on how to do this right. Stay tuned — I hope we can share progress toward this goal before year’s end!

  3. I agree with the idea of a March to be followed by talking to congress, president anyone. I will add we need to encourage colleges to add a 2 year certificate program for (SMI/professional/case/managers)The people who are hired to do this work are often not trained and are not dedicated. They also suffer from burn out. Mental health Dr are over worked/ or quit to take care of less serious cases of depression..

  4. We tried to have a “Shattering Silence” March several years ago and, though we did have about 40 people in DC, 20 in Sacramento, and 5 in Augusta, ME, we discovered that it didn’t work because family members are just exhausted and do not have the energy or resources to attend one. 😥 That’s when we decided to organize as much as we could and the National Shattering Silence Coalition was born.

    1. I’ve joined the Shattering Silence coalition. I want to learn more about what you do. I completely understand how exhausted family members are; that’s why I am wondering if we can identify partners who will come alongside. Like fresh reinforcements. KM

  5. Thank you Kerry for making our group and our report reach more people. My heart goes to the moms who can’t find their sons in the streets. Every time I see a homeless I ask myself what happened to their moms and dads. To Brian Black I want to explain that coming forward to expose your story is not easy for parents or for the person with mental illness. Please be aware that our energy goes daily into fighting the system to provide what it lacks to our loved ones – and by the end of the day we become energy-depleted from this constant monumental task to fight for rights. Our energy also goes into building communication with our loved ones – who as you know live in isolation, with very few people who understand them or are willing to listen to them. Also, we are very conscious that the clock is ticking as we are aging, so we target authorities who have the slightest chance of shifting the situation. Parents face this when their kids are 20, so they are already in their early 50’s. Yes, it is important that the public knows what is going on, and the more people talking about it the best as public pressure also impacts politics. We do need to have a Families for the Mentally Ill March, just as we had the Women’s March and the Black Lives Matter March. Maybe Kerry and Brian can find the right people to organize this?

    1. Anna…I sense a movement in the works. I see evidence of more people becoming educated to this tragedy. It will take a little time, but I am sensing forward momentum. The fact that you are willing to share your story — which takes courage – helps to shine a light on this tragedy. KM

  6. I have felt we need to come together too. Similar to the Mothers Against DD campaign. Current groups- for anti guns or anti-hazing.

    I have thought of a name as well. What is it that we all wish to change? There are campaigns to change the laws for inpatient in each state, for AOT, for more outpatient services, for co-responder models. What do all these have in common? I believe it is to improve the life expectancy of those with SMI. Providing appropriate medical care and mental health supports. My worry, if we don’t drill down to the common themes needed we will be divided and less effective. Top 5-
    remove imminent danger from involuntary inpatient
    jail diversion programs
    increase outpatient services
    (if a 4th- add increase housing)
    if a 5th- increase employment services (once stable)

    My SMILE
    Mothers Yearn for Serious Mental Illness life expectancy- or
    Mothers Yearn for Serious Mental Illness longer existence, or
    Mothers Yearn for Serious Mental Illness loving existence

    1. Nicole, it is serendipitous that you brought up SMILE. I was thinking the same thing…but I didn’t have the acronym fleshed out. I am going to curate all these responses and circle back to everyone who is interested in linking arms. KM

  7. Can you please give my name and number to the mom liking for her son. I have not seen my sin in 8 years and have not heard anything in 4. My son was diagnosed with schizophrenia in 2005 and does not believe he is ill

  8. As a podcaster who has sincerely reached to some of these moms to hear their stories, I have found many of them to be openly hostile and suspicious of anyone who isn’t a mom. They want the ear of every politician and legislator, but they automatically decide that some of us are the “enemy” and cut off all communication. (If we don’t know what’s going on, how will know who and what to vote for?) That’s not fair – and it’s rude, it’s petty, it’s unprofessional, and it prevents their loved ones from getting the help they’re demanding. When did open dialogue become such a bad thing?

    1. Thanks for your comments Brian — that has not been my experience, but I can understand how some parents might feel they have spoken out so much that they are exhausted. What is your podcast? I’ve interviewed a couple of moms on my podcast — Heart Forward Conversations from the Heart — and my listeners have been very moved by their stories and their experiences.

  9. Dear Kerry,
    Your work is so appreciated by me. You give us a voice and a deep understanding of the horrific illness our loved ones live with each day. Thank you for you for having the persistent and adventurous spirit that allows you to journey to Trieste–but more importantly walk the streets of LA in search of the keys that can help those with a serious mental illness.

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