ONE MOM'S LIST OF SMI NEEDS by Stacy Kollias

The “mental health system” isn’t really a system of care. There is no real “system” that exists.

We need funding to be spent on inpatient beds where the SMI (serious mental illness) patient stays until the “right” meds are found and he/she has fully stabilized. Not the treat and street situation we have now.

We need 24/7 intense supportive housing after discharge to keep the SMI on track with meds, shelter, food, and safety.

We need to build our housing infrastructure to accommodate differing levels of care for this population so, as they progress in recovery, they have a home they can afford and remain in.

We need to build outpatient clinics who work closely with the hospitals and residential treatment facilities to continue the same level of care when SMI are outpatients.

We need to change our involuntary civil commitment laws to mandate medication for inpatient and outpatients.

We need to repeal the IMD Exclusion.

We need HIPAA reform.

We need to fund research for schizophrenia and other serious mental illnesses.

We need to stop the discrimination of SMI and call it what it is — a brain disease.

We need neurologists and psychiatrists to work together and we need more of them.

We need clinical nurses and competent case workers.

We need so many vital things that aren’t currently in place, or they are failing miserably, and we watch our loved ones living their lives as the walking dead.

I would love to help everyone with a mental illness, but the truth is the chronically symptomatic SMI have been getting the shaft for generations. Since they can’t usually grasp their own best interests and needs — let alone articulate them in a way that will be heard and respected — they’re easily pushed to the back of the line. 

Stacy

Stacy

A MOTHER'S FIGHT: PART I - 2011 by Carole M.

To: Oregon State Legislature
Re: My Son
Date: March 18, 2011

My son was lodged in Marion County Jail for 16 months (charged with Burglary 2 and giving false information to the police). After the judge ordered an aid and assist evaluation, my son waited nearly three months before being transferred to the Oregon State Hospital (OSH) for an aid and assist evaluation. As a person living with mental illness, this was not his first involvement with Oregon's (flawed, inadequate) mental health and criminal justice systems.

At OSH, he recently passed his "aid and assist" test. He was discharged from OSH and transported back to jail where he awaits another court date. Recently, I wrote a letter to the Director of Consumer and Family Services at OSH about my son. These are some of the concerns I shared:

An interdisciplinary team meeting was scheduled at OSH for my son. That same week he was transferred back to jail, before the meeting could take place. That meeting should have taken place at OSH before he was discharged. I had planned to attend. He and his care team would have been there. His evaluation, medical progress, legal situation, and his options would have been discussed. Also, he was receiving dental treatment and had another appointment scheduled. Because of the sudden discharge, this treatment was never completed. This is one example of the lack of coordination between agencies. This system needs to be improved to put the best interest of patients first.

I spoke with my son's attorney the day he was discharged. She wasn't sure what was going on with him or when his court date would be. She said she would check into it and get back to me. It's almost impossible to talk with staff, counselors, and medical personnel at the jail, even when my son has signed waivers. There are no realistic family communications systems in jail. Visitation is limited one time a week for 30 minutes. Visitors speak on a dirty phone through plexiglas wall in a small, bleak room. Mail is limited to postcards only.

In comparison, OSH patients are allowed visitors six days a week for one-and-one half hours and visits are face to face in open, more human visiting areas. Patients can write and receive letters. Family members can communicate with staff and attend meetings.

In jail, my son has been over-medicated (sedated) for convenience. A jail is not a medical facility and only minimally addresses medical issues. 

While at OSH, with his medication reduced, he did very well. He had a good doctor and an interdisciplinary treatment team. He wasn't belligerent with staff and wasn't involved in any altercations. Staff members remarked on how well he was doing and how cooperative he was.

However, instead of encouraging him, the system sets him up to fail. His medical condition, his ability to stay well, his willingness to stay clean, and his determination not to reoffend are all compromised by taking away the long term care and support he needs to become increasingly responsible and independent.

Marion County (jail and health department) may have his name on their caseload list, but they do not have the resources to provide the services he really needs. When under Marion County's mental health system, he didn't have regular doctor visits, no real safety net existed, and he's been left on his own in the community - to sink or swim - without any true transitional support.

He has been turned away from Salem Hospital's emergency department. He was self-aware enough to understand that he needed medical attention, managed to make it to the hospital, and presented himself to hospital staff. Although he was in crisis and seeking help, he was turned away (back to the streets). They said he wasn't in "imminent danger" (even though his mind was in crisis).

It breaks my heart to know he must hit rock bottom (again), commit criminal acts (again), and "become a danger to himself or others" (again) in order to receive even short term mental health care - IF he isn't shot or killed by police or criminals (again).

What kind of a system do we have where a person must commit a crime and plead "insanity" in a court of law before receiving the medical treatment they need?

Imagine if cancer patients were in the same situation. What if they were required to become desperate, self-destructive, and criminally active before they could access and receive the medical treatment and care that they required? Then there would be a public outcry.

People living with mental illness also deserve to be treated with dignity and respect. They deserve to have the support and professional care that anyone with a chronic illness should receive, including a logical continuum of care. The individual, his or her family, and the entire community would benefit.

When my son was a little boy, he never said, "Mom, when I grow up I want to be a criminal." A jail is not meant to be a treatment facility. A plea bargain and probation are enticing options to him. No one wants to be locked up or stigmatized. From the revolving door perspective, he will end up back on the streets, homeless, or rooming with bedbugs and cockroaches in some outrageously expensive and inhumane "placement." Speaking from past experience, that lifestyle also includes self-medication and associations with people who do not have his best interests at heart. He will spiral downward until he has another psychotic break, commits a crime, is injured or killed. If he isn't killed, he is likely to be arrested and jailed (again). Statistically, he is also likely to live 25 years less than if he were not a person with a mental illness. He is also at a high risk for suicide.

My son is an intelligent, creative, 35-year old man who deserves a chance to live a better life than I've described above. He needs appropriate medical and therapeutic treatment to become stabilized. It takes time to become well and master the skills necessary to address and replace long term habits, perceptions, and behaviors. 

I believe my son has the ability to change, to become a healthy and productive member of society, and that he deserves a chance for happiness, companionship, and fulfillment in his life. We give lip service about the "the civil rights of the mentally ill." What about the right to life, liberty and the pursuit of happiness? These are all things he wishes for himself, and that I wish for him.

This is America.

Sincerely, Carole M.

 

Marion County Jail, Salem, Oregon

Marion County Jail, Salem, Oregon

STORIES FROM ACROSS THE USA - A COMPOSITE

Comments in response to Teresa Pasquini’s “Shattering Silence” campaign (https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness). 2017

“My son is in need of mental health treatment, he thinks he is not ill! I will need help getting him off the streets. He is homeless!” FLORIDA

“People with SMI are often incapable of accepting and continuing treatment to make their lives manageable, calm, and stable - for the inflicted as well as their caregivers and the community at large. We need to do everything in our power to assist families help their loved ones by removing barriers to treatment in the name of privacy and rights before the next inevitable, preventable tragedy occurs.” CALIFORNIA

“I love someone with schizophrenia. He was mandated to Assisted Out Patient Treatment (AOT) in 2009 because he attempted to kill himself and was forced to inpatient four times in the year. He was DX in January. With AOT he went into a half way house for nine months. He became stable and started to live his life. He graduated with honors with a BA in management, works, drives, has an awesome sense of humor, and is starting a peer mentoring program. He will apply to get his Master's degree in counseling and human services next fall. He could have done none of this without the support of his AOT team. The treatment model for people with psychotic illnesses is very flawed. The more support they get to stay stable the better outcome for their life. If they are delusional they can't make rational decisions. Please support AOT.”  CALIFORNIA

“Recently, my adult family member took his life though we tried for nearly a year to get help for him. He had complete lack of insight about his condition and thought he could not die. His neighbors even called the police to report his dangerous (to himself) behavior and we called them and the local mental health department to see how we could get help. We were blocked by the current laws and criteria that make it almost impossible to get help for someone who says they're ok, even when multiple people are reporting and trying desperately to get them help. This was deadly for our family member and traumatic for our entire family. No family or person should suffer this way! It is too late for our loved one, but there are so many more precious lives that could be saved if progress could be made. Every person you see out there on the street (or wherever) is someone's child, sibling or parent. Please help by passing and implementing measures that will help the most vulnerable in our society and their families.”  COLORADO

"I agree that those who have anosognosia, and do not realize they have a mental illness or refuse to take meds, are left to their own devices because, in spite of being mentally ill, their civil rights are more important than their brain disorder. So they can't be forced to take medication against their will.”  PENNSYLVANIA

“I had an older sister who desperately needed help and did not get it. She died alone, without family and homeless."  NEW YORK

“My family has suffered greatly because of severe mental illness of family members: my deceased husband, my son and my sister-in-law. Now my husband and his brother are dead and my son accused. Help stop the pain and suffering families who are unable to get the treatment their love ones need, even when they themselves don't believe it to be so.”  NEW YORK

“As a family member, directly involved in the care of someone released over 50 times without AOT, I know it just doesn't work. Now with just one AOT involvement, my family member has had zero forced hospitalizations in over 6 years. AOT works. Stop the pain and destruction of lives, so advocate for those too seriously ill to help themselves. AOT for SMI Works!”  WISCONSIN

To Be Continued...

Photo credit: Christine/Flickr   

Photo credit: Christine/Flickr

 

UPDATE: HAPPENING NOW - HIPAA IS KILLING OUR LOVED ONES by Linda Olivia

As you know, my daughter, Heather, was a missing person out of New York State. She'd stolen my car and my purse and was found in Ohio. Now she's at Strong Hospital (Northcoast Behavioral Healthcare).

I've been in Ohio and it's been nothing but a nightmare. The doctors haven't spoken to me so I can give informatIon to help in my daughter's care. I know about the HIPAA law (Health Insurance Portability and Accountability Act) and I'm not asking them to tell me anything. I've been put off and put off in trying to talk to anyone.

On Thursday, the hospital promised me a call and a meeting at one o'clock. Nobody called. I went there again yesterday and still no one would speak to me face to face.  When I told them I was going to call the judicial committee, they came down to talk to me. They accused me of threatening them and were very hostile. Finally, they've  agreed to meet with me today at 2:00 p.m. 

I'm praying things go all right but I'm afraid that they won't from the way I've been treated. I've called New York State to try to get Heather back into the AOT (Assisted OutPatient Treatment) program and they've not returned my call. I'm praying that someone can help me. I've talked to advocates in Ohio but nothing there either.

Please.  I am desperate.

Photo Credit: Onandaga County Sheriff's Office Heather Olivia   

Photo Credit: Onandaga County Sheriff's Office
Heather Olivia