- Category: Crisis Response, Discharged Without a Safe Plan — Residential Facility, Family Inclusion (HIPAA), Voluntary Care Unavailable
- Tag(s): Death, Severe Deterioration, Suicide or Attempt
- Location(s): MO
My son was diagnosed with schizophrenia at fifteen. From that point forward, everything changed. We spent years trying to get him the help he needed, and the system made that harder than it ever should have been.
When he turned eighteen, everything shifted again. HIPAA decided he didn’t need me anymore, even though his illness took away his ability to make decisions. The system protected paperwork, not my son.
From there it was one roadblock after another. Every time he tried to get help, we ran into policies, rules, refusals, waiting lists, and people who were more concerned with liability and paperwork than treatment. It felt like no one wanted to take responsibility for someone as sick as he was. We were told to wait, to try again, to call someone else. While everyone bounced him around, he kept getting worse.
The last time he reached out for help, he went to his PROS Program seeking help. I received three different accounts as to what actually occurred.
- My son never showed up.
- My son did show up. They all had lunch together, then he left. His autopsy showed this to be a lie, no food in his stomach, just brown liquid. This was less than two hours before his death. They allowed him to leave. He wanted to come home to Florida finally, and instead they let him leave. They never called me even though he had a HIPAA release signed.
- My son did show up. His case manager noticed something was very wrong, called in two other workers for an assessment, and then let him leave. They didn’t call us even though he had signed a HIPAA release. They never called. This was less than two hours before he died.
Two hours later, barefoot and in a state of psychosis, he ran toward an oncoming train and dove headfirst.
He didn’t want to die.
He was sick.
And he never got the treatment he needed.
I don’t share this to take hope from anyone. I share it because families are still being put in this position — still told to wait until their loved one is dangerous, homeless, jailed, or dead before anyone will help. No one should have to suffer like he did, or like we did. There were so many chances to intervene. So many chances to do better.
I stand with every family still fighting. I will not stop speaking until this changes.
*Each story is shared by someone impacted by untreated SMI, lightly edited for clarity, never for meaning.
THE ASK
The author’s message for legislators:
ASK End the IMD Exclusion and fund long-term psychiatric care for people with severe mental illness who meet the standard of grave disability — so families don’t have to wait for tragedy before treatment is allowed.
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2 Responses
They released my 19 year old son and called us after he had already been gone an hour even though I called several hours before asking if he would be released. We confirmed that he had a release on file. I drove around 3 hours looking for him….I called the police…it was horrible..the worst part was that the weather was like 50 degrees, he had on paper scrubs and no shoes. I was like how do you do that to someone’s child?
I’m so sorry for your loss and the unnecessary pain you and your son had to endure. Obviously this should never have happened. Sadly it is happening too often. Thank you for speaking out.