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.

Our family has been through hell and back more than a dozen times in fighting for our son’s mental health recovery. Our son was a happy, healthy, athletic and smart kid until the age of 19. In 2019 all of our lives changed and has been a constant battle since.

A life changing traumatic event caused our sensitive and loving son to fall into psychosis. This was obviously terrifying to deal with for all of us. Since this time, our son has been in and out of hospitals a million times, on and off a million medications and on a roller coaster of a million ups and downs. We, as a family, have been on this crazy ride with him. He was diagnosed Bipolar 1 with psychotic features and most recently a Schizoaffective disorder has been added to his diagnoses. On top of all of this, he has anosognosia, which we tend to see as the most dangerous and terrifying of all of these. For anyone who does not know the definition of anosognosia it is the illness of not being able to perceive their own mental health condition which makes it difficult for them to seek out or adhere to treatment. With this said, as an “adult” age 18 and over, our mentally ill son who does not know he is ill, has all the power in his care. We even have begged for the medical staff to activate the Healthcare POA we legally had drawn up but are never able to utilize because “incapacitated” is such a broad term and rarely able to be deemed as such unless unconscious or patient has been declared to have dementia /Alzheimer’s.

We have had so many experiences, too many to count, where our son has been so delusional that we have had to call the police and have him taken to the hospital, only to be released, in an Uber mind you, and sent back home to us where he resides, all because he said he was fine and did not want to be treated or hospitalized or in the rare event that he may have been ready to be voluntarily hospitalized was told either there were no beds available and/or “did not meet their requirements”. He cannot live a life on his own, cannot take care of his basic needs with no schooling, no employment and no bank account but yet he is given the right to refuse treatment. So this cycle continues, he is now 26 years old.

We have fought this battle non stop and the only times we felt like we had small victories is when someone actually did listen to us, used common sense and was able to pursue a Ch 51 Mental Health commitment. Our son is now in his second Ch 51 in the last 6 years. At least here we know he is safe and being treated, at least we think he is. For how long this time, we don’t know, and may not know as sometimes we have been privileged to this information and sometimes not, depending on what forms may or may not have been signed by our son.

We would like to see the HIPAA rules changed for SMI and anosognosia patients specifically. If this was changed, we as parents of an adult child who resides with us and whom we provide for, would have been able to get him the help he needed sooner and without the fight we have endured and continue to endure.

Our son has us, a family who will never give up on him and never leave him homeless. What about SMI individuals who do not have this support system? This is where we would also like to advocate for change in involuntary commitments. The majority of our homeless population are mentally ill and are not receiving the treatment they need due to lack of family support and/or even more so, lack of funding for treatment facilities.

Instead of continuing to add additional funding for substance abuse disorders treatment and facilities, additional funding needs to go to more residential treatment centers and more beds for the severely mentally ill.