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I am writing this letter as a mother of a young adult son diagnosed with a severe mental illness (SMI) in hopes of making positive changes to our mental health system.

As I write this, I am waiting for a CPS interview. I wish I could say this is the first. I wish I could say it will be the last, but I know as a mom to a young son with schizophrenia, it won't be. Never did I imagine I would be living this life. A life where my son cannot find care, where we can't find help. Yet, here we are.

Why do we have to wait for the tragedy to occur before intervening? Gravely Disabled should be the standard. We have politicians from both sides flinging words like 'crazy' and 'monsters' when what we are seeing is Sickness.

My loved one was diagnosed seven years ago. That is when the hallucinations and psychosis started. I do not know how many years before then she had the voices in her head. I can only guess that, I think the voices started when she was in her 20s. And she self-medicated with Street drugs. After a brief time in jail, she got on antipsychotics.

At 19 years old, my son had a successful job at which he had just received a promotion. One day, he came home from work and said laser beams were shooting at him from his work computer. He then developed what I know now is "God Complex". He thought gold diggers were after him, and his competitors at other companies had hired hit men to kill him because he was so successful.

"Mom, I have something for you," my son said in a voice not his own. He had just asked for money, and I told him no.I was sitting outside in the sun. He came around the corner, and the last thing I remembered was his hand reaching into his pocket. "Oh no," I thought. Somehow I knew he was reaching for a knife. The next thing I knew, I woke up covered in blood. A voice in my head that called me "Sweetie" was telepathically telling me what to do: don't look at your stab wounds, call 911, go next door to the neighbors and wait for the police.When the police came, I told them my son was schizophrenic and that we had just moved to California from Seattle. "Please don't arrest him," I said. "He needs to go to a mental health facility. He's never been violent."

I will start here, this account is long so please be patient and bear with me. I have to say my disappointment is great, and I am very concerned. This was sent to the governor, lt. governor, both my state representative and state senator, and my state's DHHS head for mental health services. To date none have responded, which is sad.   In 2013, my son was diagnosed with schizoaffective disorder. At that time, he had two voices in his head, hallucinations (auditory and visual), and was extremely depressed. I am thankful for the specialized university-based early intervention program that worked with me and with my son with cutting edge research, and after many drug and supplement combinations, he was stable. This took about 4 years. He entered and completed a structured residential and vocational rehabilitation program designed to help adults with mental illness build independence, but upon completion, when he searched for housing, there was none within his price range, and so he came home. He still had a part-time job where he lived, and another one as a dishwasher. Then the COVID-19 lockdown happened. This was 2020, he lost both jobs, and gained another voice. Not a good thing when you already have two. After additional meds, further therapy, he has remained mostly stable, yet there are days when the voices are loud (some days yelling, some days banging pots). I have observed that sunspots and full moons, and severe changes in barometric pressure all affect his fragile brain. He is currently on 10 prescription medications and almost as many supplements (his doctors requested we use these supplements, and we do not get reimbursed for this expense; some of the supplements, if not taken, cause his voices to be loud and the cat to talk to him). His last hospitalization was in 2018 for 8 days.   Now you have the abbreviation of his history; the next part tells of the great disappointments that have occurred.   As my husband and I are aging (68 & 69) we, as well as my sons siblings, began in 2021 to have hard and difficult conversations around what we could do to best provide for our son when we are dead. We have 2 daughters and one other son. They are all doing their own life as would be expected (our disabled son will be 30 later this month). We began the task of trying to find an appropriate situation for our son, knowing his limitations and looking for him to have his best life. Needless to say, we were sorely disappointed.   I contacted our area’s behavioral-health authority and expressed my concern, and was told at that time there were 134 beds in our county (our current residence), and was promptly brushed off with a list of all facilities in our county that were under the Mental Health umbrella. Again, the disappointment after spending several days plus calling and checking out websites, I found out there were NONE that would accept someone with schizoaffective disorder. Yes, there were 134 beds, but these were for addiction, developmental delays, autism, veterans, and eating disorders. I used the list provided by our area’s behavioral-health authority, and some of the phone numbers were no longer in service, and several did not answer the phone, and when messages were left, calls were not returned, again sadly and frustratingly disappointing. And they did not follow up with us at that time, even after we shared the information we had found.   SO I moved on to our state's DHHS website, and after much digging ( this website is less than user-friendly), I found out about how to register a complaint. And I did send in a complaint. A representative called me back and as we discussed the issue, she was taken aback when I mentioned my son had 3 voices that he deals with every day (the mental health umbrella covers such a vast array of issues but it was again disappointing that this would take staff aback). I was again sent a list, this time it was a 254 page list of Mental health for the state. After 3-4 hours of culling the list, removing all those who dealt with developmental delays, I was left with approximately 892 beds in THE ENTIRE STATE, None in our county as I had already found out. This works out to less than 10 beds per county. I was again disappointed because of the small number, because the list is inadequate in information, because there is no way to contact many of these facilities on the list, again disappointed because this list does not say if there are beds open, filled or how long the wait list might be.   I then went back to do a web search, many of these beds are under different umbrella groups like Easter Seals (a large nonprofit organization), or regional behavioral-health networks. And I think are being paid through the state with Medicaid monies. So many of these require a pre-admission online form to be filled out. I did this with varying results. The regional behavioral-health facility have yet to acknowledge my submission over a year later. Easter Seals had only openings in another state, and a regional behavioral-health organization in another city was the only one who put me in contact with a care manager and gave me a direction in which to move forward, however their only available opening was an apartment 2+ hours away from us and further away from his provider, and would only have a case worker check in once or twice a week (with all his meds alone this would potentially cause him to implode and require hospitalization). After going through the process and being disappointed yet again, I received a letter as did my son, about the “tailored plan” and was once again contacted by the regional managed care organization. We did the preliminary intake interview and were assured we would have a follow up on a regular basis. We then learned this had been postponed from October 2022 to April 2023 but there was little follow-up except through email. The organization wanted his med list, then wanted to know what each med was for (again disappointed that those in charge of directing care did not have the knowledge nor the ability to use a PDR (Physicians' Desk Reference) or even a Google search about the meds). We then, after the April notice of postponement, heard nothing, but received a letter stating that the regional behavioral-health facility had been trying to get in touch with us in July 2023 (we had had no phone call, email, or other communication ). I called the number provided and was told that they had changed computer systems and not all contact information was transferred (again disappointed that the onus was placed on us “we have been trying to contact you“ when indeed it was their issue.) I was also assured that our case worker would contact us within the next week to ten days. That was July 2023, it is now October 2023, and we have NO contact with the regional behavioral-health facility in any form, no phone call, no email. And interestingly, the State sent a notice that the “tailored plan “ was put on hold indefinitely, and the next week we got a letter from them saying “ welcome to the tailored plan”. It is enough to make you just shake your head.   I then went back to the DHHS website and found that you could address barriers through something called the Olmstead Barrier group. I sent an email with the abbreviation of my son's history. I got an email back and returned it with times and days when they could contact me with my home land line and with my cell phone number. There was no response after about 2 weeks I had a voice mail on my cell phone which I responded to via text again saying that the representative could call and leave a message on either phone and I would call back as soon as possible, explaining that we get at least 20 robo calls and I don’t often answer my phone directly because of this annoyance. I received a text acknowledging he had received it. Then, another disappointment, I have yet to have a conversation with this same representative. He did contact me via text, asking my daughter's name and seeming to indicate we had had a conversation about my daughter. I informed him by email and attached my original email indicating that it was my son, and we had not spoken in person, on the phone at any time. That was in late July or early August, to date (It is now October 2nd as I write this). There has been no reply to that email and no further communication in any form from the Olmstead group or the representative. So here is another barrier, that barrier group can put on their books - the inability to get in touch with the barrier group.   I recently read that Medicaid funds were perhaps going to be shifted to doctors and others to teach caregivers how to care for their loved ones — how about instead of this, have the caregivers reimbursed for their time and effort for keeping their loved ones stable, out of the hospital? After all we know our loved ones, we work with them daily.   I realize that mental health is a huge umbrella issue, so here are some helpful suggestions that would lessen disappointment and at least give a genuine picture of the woeful state of services for those with serious mental illness, rather than the false hope situation that clearly exists now.   In every “list” please make it known which one will accept those with schizoaffective disorder. Also, make it known which, if any, beds are available. Have contact information, forms, and admission applications made State-wide rather than agency by agency, and require that the agencies have a valid contact number and email address, and a timeline for response. Listen to those people who live, work, and take care of those with severe mental illness   If you have read this whole thing, I thank you. Yes, I have heard of the tiny home village in our county, yes, I know there are 15 homes, I think 5 are dedicated to veterans, and the rest are for those who can live independently, have some sort of job and are lucky enough to win the lottery in being chosen for a tiny home.

My son was recently found Not Guilty by Reason of Insanity (NGBRI) and was court-ordered to treatment for one year. What should have been the beginning of recovery became another tragedy — one born from the deep cracks in my state’s Mental Health Procedures Act (MHPA).

I am a 74-year-old widow with 3 grown children: my middle daughter is 50, almost 51, and homeless, schizophrenic, and has dissociative disorder. It runs in her dad's family, as there are 2 other people with the same disorder. Under all that, she is a really good lady, and there is a reciprocal love between us. Her behavior started changing after I moved in with her, at her suggestion, after my husband died.   In 2023, she had done a lot of damage to the walls of her bedroom, writing on the walls, putting holes in them, and damaging the neighbor's truck with a baseball bat. She was arrested for the damage to the truck, and she had threatened another neighbor.   I had to put a restraining order on her. She was getting physically violent with me. I had the RO lifted this year, at her request; she wanted to come back here to live. I knew the landlord would not allow that, but she couldn't understand why. One day she asked me why I put an RO on her and I said, "Don't you remember what you did? You scared the hell out of me," and she looked like I was telling her she had lobsters coming out of her ears.   She has delusions that I own an apartment house, and claims many other things, including being sex trafficked. That might be possible as there are reports of that in this area. She did go into a drug rehab program, but left early to stay with a friend instead of sober living. She drove the friend crazy enough to eliminate her from his home, and she has been homeless since 2023.   I would like to see her get mental health help as her health is compromised with other issues such as epilepsy and pancreatitis, and thyroid issues. I changed the way I spoke with her, and that worked, but not as far as my suggesting she get help, which she just ignores and then says there is no help for her; she claims she has been turned away.   I truly want to see her get help and don't want her mental illness to cause any other problems. She is angry a lot and screams at random people. The people she hangs with are, well, there is a certain culture of homelessness that these folks hide in.   I've been told over and over that she has to want to get the help, but what if something happens to her or she does something that isn't right and she gets in trouble because she is mentally ill?   We really need help.

My son killed his grandmother (my mother) while she was eating breakfast. He wasn’t angry, and he wasn’t trying to hurt us. In his mind, he was protecting us. He believed she was a witch whose soul had been removed. That morning, a voice he knew as the Archangel Michael had told him, “It’s time.” He put on what he thought of as his Angelic Army uniform, picked up the knife he had been using to chop raw cabbage, and walked into the kitchen.

In 1980, I was forced into treatment. I was convinced that my life was in disarray but not in crisis. I was wrong. My parents were at wits' end trying to figure out a way to get me into treatment. Finally, I would get good treatment, but it took a while for me to realize that I have to take meds to maintain my sanity. My poor parents, after about two years, convinced me to take my meds every day.

Here is our story... A Plea for Help.

Our loved one is a child living with severe mental illness. Because she is under 13, there are no long-term facilities that will accept her, even though she needs that level of care. Time and time again, we have been turned away simply because of her age.

In May of 2024, I tried to get my then-15-year-old son into an intensive mental health treatment residential program. He was starting fires, and no matter what I did to try and keep the fire-starting materials out of the house, I couldn’t. He’s had many challenging behaviors over the years, but this was the deal-breaker safety issue for me. I was afraid for our collective safety.

Can you imagine living in a world where the only hope for your adult child to receive life-saving treatment is that he commits a low-level offense? That is where I find myself after twelve long years of watching my son slip through the cracks of a broken mental health system. For twelve years, I have lived alongside manic episodes and psychosis, endured broken family relationships, and carried the constant fear of what might happen next. I have locked my doors at night against my own child. I have paced the floors after yet another hospitalization, only to see him discharged far too soon, still sick, and with no meaningful treatment plan.The uncertainty never ends. Will he spiral again? Will he get hurt—or hurt someone else? These are the questions that haunt me every single day. And yet today, I found myself feeling something unexpected: gratitude. I am grateful that my son’s case landed in a court with a mental health court. I am grateful that the public defender understood severe mental illness and respected the information I provided, recognizing that sharing it with my son could further damage our already fragile relationship. For a moment, I felt seen - not dismissed, not ignored, but heard. My son is not a stranger to achievement. He was once a dedicated athlete, is college educated, and remains one of the most compassionate people I know. Severe mental illness has stolen so much from him and from us as a family, but it has not stolen his humanity. That’s why I cannot accept that criminalizing people like my son is the path we rely on for treatment. And yet, I am relieved, even thankful, that the court where he will appear has a mental health court. I cling to the hope that this could finally be a turning point for our family. I live in one of the two states that does not have Assisted Outpatient Treatment (AOT). Without it, countless families like mine are left with no safety net, no way to intervene before tragedy strikes. And tragedy is striking, over and over again. Every time I hear another story, I feel both a wave of gratitude and deep sorrow. I am grateful that my son has not taken another person’s life. I am grateful he is not serving time in prison. I am even grateful - though it pains me to say it - that the crime he committed was low level, and in the right jurisdiction, one where mental health court exists. But my gratitude does not erase my grief. I am angry and profoundly saddened - saddened for the families who will never see their children again, whose loved ones died in the grip of untreated psychosis. Saddened for those whose children are locked away in jails and prisons, punished for an illness they did not choose. Saddened for the men and women living on our streets, stripped of dignity, abandoned by the very systems that were meant to help them. Saddened for every family that has lost hope, worn down from years of trying to navigate a fragmented and failing system. We should not have to hope that our children break the law to get treatment. Families should not have to live in fear or in gratitude for what feels like crumbs from a system that consistently fails to provide compassionate, continuous care. We need real solutions—laws, policies, and programs that meet people with severe mental illness where they are and keep them safe, stable, and alive. Until then, we will continue to see preventable tragedies. And families like mine will continue to live with both hope and heartbreak, wondering what tomorrow will bring

Listen to blog here:

My son was in his first year of college when he started withdrawing, and having bizarre behaviors that I thought was just typical behavior of a teenager. He was later diagnosed with paranoid schizophrenia. That was seven years ago. It has been a very difficult and heartbreaking experience. My son was never a troublemaker before this diagnosis; however since the diagnosis, he has been arrested 3 times during psychosis. Prior to the arrests I have pleaded to his mental health providers to hospitalize him because I could clearly see he is decompensating. Each time, I have been told he’s not sick enough or not in immediate danger to himself or others. I have called crisis intervention teams several times, but they come in ask him if he’s suicidal and when he says no, they leave. I have even called police and pleaded for them to take him to inpatient treatment and they declined.

Our nightmare began 10 years ago when the 2nd of our 4 sons started isolating, gaming constantly, and losing interest in doing things. He was always the most social, our funny guy, athletic, musical, artistic.

Unfortunately, my loved one developed schizophrenia from being tortured in solitary confinement and abused by officers without ever even being convicted of a crime. The same system that caused his severe mental illnesses continues to punish and torture him for having symptoms of the mental illness they caused.

I am a loving and caring mother of a 38-year-old son with medical disabilities with severely mental illness. I am a senior and have been the only caregiver. I am appalled at how the United States government has refused to render medical care to my son that suffers from a brain disease/disorder. In our country, the unfortunate people that have SMI are incarcerated, punished and abused. Our government doesn’t allow the family members to advocate for an adult with SMI.

Just this Summer, my adult son, who has lived with me for a decade, slipped into psychosis and burglarized a neighbor's vehicle due to command auditory hallucinations. He believed he was gathering evidence of a nonexistent crime in which this neighbor was trying to frame him for.

Our story has been unfolding for over a decade. I’m the Mother of a loved one LO’s who’s currently waiting in jail.

Where do I start? My son is 23 and is currently in jail for missing a court hearing for a simple trespassing violation. He didn't believe this court hearing existed, and I was manifesting it by talking about it. As much as I hate the fact that he's behind bars, I am relieved that he's not at home, and my daughter, grandson, and I don't have to live in fear of him.

This has been a 25-year journey with our son diagnosed at 21 with Schizophrenia. Add in Anosognosia, and self-medication with alcohol and whatever is on the streets. So, we have had cycles of stopping meds, going to the streets for drugs, being arrested, gets back on meds in jail, and we are back on the recovery track.

My son is now 47 and was diagnosed with schizoaffective disorder at age 17. He’s been in treatment for most of this time. He’s had some rough times with the first worse event ; when after complications from a psychotic break 18 years ago he had to have his left leg amputated. So he uses a wheelchair.

As a young parent, I read ‘Children the Challenge’ by R. Dreikurs which recommended ‘natural consequences’ rather than lecturing or punishing. My now 40-year-old son was ‘finding his way’ and in the process racked up some strong memories with friends and relationships. Should I have prevented this mind and memory development, I don’t think he would have stood a chance against the medications he is now on. I never turned him over to ‘the world’ but kept tabs, kept being involved.

Fear. When our son called in the middle of the night, declaring that he had died and been re-born as God, and that he needed to save the world, I was instantly thrown into the world of living in fear. Fear of not knowing what was wrong. Fear that our son wouldn’t respond to treatment. Fear that he would try to convince the wrong people that he needed to “save the world.”

Post Covid, our family life exploded. My twins, then 14 returned to education after 6 months of online learning. My son with ADHD struggled but he began HS. My daughter, a year behind, became very dysregulated at home and at school. Her moods shifted quickly and she became volatile, breaking anything in her path, hurting herself and sometimes us.

My 33-year-old loved one's first encounter with schizoaffective disorder resulted in him running down a highway from his workplace, thinking his coworkers were trying to "unalive" him. I found him hiding in the woods near his home, several miles from his work. He was trembling with fear but trusted me to get him safely inside his home. I did not know what was going on as this was the very first time he had ever acted this way.

My son began showing symptoms at the end of his senior year of college. He seemed depressed & overwhelmed. He moved back in with me. He was fearful & paranoid. He requested hospital care one night, but they kept him for less than 24 hours. He slightly improved to getting a job. But still had anger issues and weird thoughts.

Our child remains a prisoner of his own mind, held hostage by a severe mental illness, trapped in a world that limits his cognitive functions, and though processing, tormented by tactile and visual hallucinations as well as delusions that derail his former logical and rational thinking into a wasteland of perpetual self-shaming, fear, and paranoia. It’s been over 3 years since his diagnosis, and the torment continues to tear through his and our lives. At first break, we did everything right and got him the emergent services he needed - but the limited 10-day hold proved worthless with four days in a pod and only 6 of actual treatment. The hospital professionals insisted he was well enough to go home, and I pleaded, “He doesn’t even know me. He says I’m not his mother. You cannot let him out.”

Our beautiful, loving, sensitive, smart son began to have symptoms of schizophrenia 10 years ago at the age of 17. We sought professional help immediately from a therapist/PhD who had worked with our son after our move from one side of the nation to the other during middle school. The reason I mention was that we knew our son's behavior was drastically changing, but this therapist did not offer us answers or support when we were searching for answers and help for our son.

Our son, who is 24 years old, is suffering from paranoid delusions with his obvious psychosis. Because he doesn’t acknowledge or even see that he has a problem, he will not seek the mental health treatment he so desperately needs. He was a good kid who suddenly after college and coming home, started having delusions that he was being watched and followed. He has expressed his fear about wars, spies, vans in the neighborhood, and so many other things that he believes to be true. His fear has caused him to become a completely different person in the last year. His anger and threatening stares have made us, his family, feel unsafe. We sleep with doors locked, knives put up, and have to constantly watch him to keep him safe and possibly others safe.

My sister in law has schizophrenia. She has visual and auditory hallucinations, bipolar manic depression, and severe anxiety. One of her medications stopped working, and she went to see her psych doctor for help. He told her to commit herself immediately, so she attempted to do so. She went to the same hospital she had been committed to twice in the past. My daughter took her and sat there for four hours while she waited for her turn, and then while they did the assessment. At this point, she was already having auditory hallucinations, claiming that she was listening to conversations in her head and having full conversations with people that she swore were right there, but no one else could see.

There is a kind of grief many people never talk about, ambiguous loss, the heartbreak of watching someone you love slip away mentally or emotionally while their body remains. It’s a grief rooted in hope, confusion, shattered expectations, and deep powerlessness. I’m not sharing this for pity or attention. I’m sharing it to raise awareness — for myself, and for other mothers who may be suffering in silence. Our silence keeps us sick. And I want to heal.

My adult son was home for the holidays. He had been released from a mental health hospital after a 2 week stay a few months back. He was laughing at the menus, the numbers being placed there for him. Also, the security cameras as we walked into the restaurant, waving and laughing as he passed. That evening, he took Christmas ornaments off the tree and placed them in the planter dirt on the front porch. He hung the "Joy" sign next to the front door upside down. He broke apart a pizza cutter/server, and placed it on the living room floor. Next was a hanging 36" x 24" framed picture that he placed on my tiny desktop printer in my office.

My son was in an acute psychotic state. As a schizophrenic, these breaks can and do happen without warning. He slashed his own arm very deeply with a knife. My husband and I called an ambulance. The ambulance personnel refused to take him to the hospital simply because when asked directly - mind you, while in a clearly psychotic state - he said he did not want to go.

My daughter had her first psychotic break Mother's Day weekend 2004. While we didn't know what was going on or even what kind of facility we ended up in, at one point, the behavioral health system said they couldn't "admit" her so we had to take her home. After a horrible 4 days of no sleep, thoughts that made no sense, police intervention for no crime, but anyone with a psychotic loved one knows cops just happen with these illnesses, she ended up being admitted against her will. I know we are lucky in my state as we allow for involuntary treatment here. But the trauma of trying to get care when she is psychotic has haunted us for the last 21 years. She has since had 5 more psychotic breaks from stopping or reducing medication and in one case, the one she was taking just stopped working.

Our daughter E will be 35 in October. A talented chef and artist, she possesses a huge heart for helping others. She is a wise, old soul—if you embrace such dispositions. She has thrived on her own, with support from her network and care providers. She studied Art Therapy and Holistic Therapies—with a curiosity and understanding of the mind/body connection, epigenetics, and van der Kolk’s work on trauma—The Body Keeps the Score. Incarcerated at the county jail since August 2022 with a brief detour of homelessness after being released on a clerical error. She was re-arrested for failure to appear, taken to a local hospital, and returned to jail in August 2022.

Forty four years ago, he was born a preemie - just 4 pounds, 5oz. No major medical problems, just underweight, jaundice, and low iron and sickle cell trait. Though his father and I didn't stay together, he kept his son in sports, the latest sneakers, unusual haircuts. But he was obsessed with me. Years of back and forth to court, but I thought he was thriving.

Many should be aware that too often psychiatric drugs cause psychosis instead of treating it. My son was wronged by the mental healthcare system so many times. I believe that if he received an adequate care at the beginning of, he would not have been where he is now - on probation, living in a group home.

My wife has had 3 mental breaks in 4 years. The first, she was taken in and kept 27 days. The facility worked with me while I got guardianship so they could force treatment. She was given antipsychotic injections and medications to bring her out of psychosis. She was diagnosed paranoid schizophrenic. They were in contact and very helpful. It’s important to note she was admitted one time, released one time.

Without medical assistance, my son won't survive in this world.

I live in Massachusetts—one of only two states in the country without an Assisted Outpatient Treatment (AOT) law. While some states have made progress, ours continues to criminalize those with severe mental illnesses rather than prioritize early intervention and treatment.

My son had been in psychosis for a couple of years and would call the police because he thought people were trying to kill him. I called once after such an incident, and asked if they could take him into custody and get him help. They replied that it’s not against the law to be mentally Ill so they could not do anything and asked that I not bother them again. I asked if they knew of any other resources to get help and they informed me that they weren’t the bureau of information. Another time he called them because he thought someone was on his land and he thought he shot them in the face. That time they told him that if he ever called them again there had better be a dead body or he would be arrested for filing a false police report.

My son has struggled with paranoid schizophrenia, and anosognosia when he is symptomatic, for 15 years. Two years ago, his biological father passed away. At that point, he decided to stop taking his meds. By the time he called mobile crisis, he was fully symptomatic. They asked if he felt like he wanted to harm himself or others. He replied, "Of course not." They recommended he call his psychiatrist.