SAMPLE SMI LETTER TO 2020 PRESIDENTIAL CANDIDATES by Dede Ranahan

5/9/19

Presidential Candidate (NAME)
Email or address

Dear 2020 Presidential Candidate (NAME):

I often hear discussions about mental health awareness, but I don’t hear discussions about serious mental illness (SMI). Many of us, in the SMI community, fear that most focus is given to mental health conditions where people are resilient, can recover, can go to work, and live independently. I appreciate the goal to give hope to these individuals. The story, however, is much broader.

With SMI (schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, OCD) some people do not recover, and cannot work or live independently. Some are so sick they don’t realize they’re sick (anosognosia), don’t respond to treatment (if they get it), and end up incarcerated, homeless, missing, suicidal or dead. The SMI population represents 4-5% (10 million) of the mentally ill in the United States. And ten times as many people with SMI are incarcerated as are hospitalized. For whatever reasons, these individuals don’t get the attention they deserve and consistently fall to the bottom of the proverbial heap.

My son, Patrick, was one of these individuals.

If it “takes a village to raise a child,” it takes a country to help a “child” with SMI — parity in mental health care, IMD (Institutes of Mental Disease) Exclusion repeal (beds) , HIPAA (Health Insurance Portability and Accountability Act) reform, housing, hospitalization instead of incarceration, brain disease research, supported education, and on and on.

So far, our country is not stepping up. A serious mental illness system does not exist.

The presidential candidate I’ll vote for will have the courage and insight to raise SMI issues and to create a plan/policy to deal with them on a national scale. What is your plan/policy for SMI? I would like to read about it on your website.

Thank you for your prioritization of SMI issues.

Sincerely,
Dede Ranahan

www.soonerthantomorrow.com
A Safe Place to Talk About Mental Illness in Our Families
dede@soonerthantomorrow.com
Author - Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life
(Available online at Amazon and Barnes & Noble)

ADDRESSES: See yesterday’s post for addresses/email for 2020 presidential candidates.

ONE OF THE LUCKY ONES by Sheila Ganz

When I punch in the five digit code, I steel myself to get into the elevator.  To leave my sister. To hold back the tears. I remind myself that she’s finally near me at a good facility in San Francisco, and even if I stayed another hour, I’d still have to leave. It wasn’t always this way. The five-year nightmare started in 2010 when Barbara was spiraling out of control.

It’s gut-wrenching to watch a loved one suffer emotionally and physically, and be powerless to help her. I love my sister. In our 60-something years, we’ve always been close. My sister lives with schizophrenia.

As I walk through the sliding doors and go to my car, I think back to moments we had in Brockton, Massachusetts, where she lived with our mother. Every year, when I visited, we made a point to have lunch together at a local sub place, then get crème-filled donuts covered in powdered sugar, and drive to the local park that has a small lake with geese and ducks. We found a bench and basked in the sun enjoying the peaceful surroundings. We shared our problems of the day.  Hers about a co-worker and mine about all the different aspects of making a social issue documentary film. We pondered solutions.  In the distance the rush of a waterfall smoothed things over.

The beginning of the nightmare.

It all started when Barbara’s psychiatrist retired and she couldn’t find another she liked. Her prescriptions ran out. She wasn’t getting along with Mum and called the police. When the officers saw Barbara’s disheveled state, they took her to the emergency room for a psych evaluation. But the relative, who was her healthcare proxy, didn’t believe in psychiatrists. He took her out of the hospital, that night, before a doctor could see her.

Soon after, Mum decided to sell the house and move the two of them into an assisted living facility. I flew out to help with the move. Nothing could prepare me for the shock of seeing Barbara’s furtive looks, hollow cheeks, sagging skin, and clothes hanging off of her petite frame. I was heartbroken.

Barbara’s reality was as real to her as it was unreal to us. In the unfamiliar environment, her world was fraught with danger at every turn. The food in the freezer was poison. We had to coax her to eat a few spoonfuls. Her main activity was pacing up and down the hall for hours yelling, “The police are going to put me in jail.”

I asked her not to yell because it was disturbing the other residents. She insisted, “No one else is here.”

I gave Barbara a shower and could see her ribs. Mum and I tried reasoning with the relative to get her the help she desperately needed, but to no avail. The insurmountable brick wall of the HIPAA privacy law prevented us from taking action. It was excruciating to watch my dear sister waste away.

After months of Barbara’s disruptive behavior, the relative was forced to get her medication for the schizophrenia. It helped a little bit. Then she fell and had a minor fracture to her left hip. She was moved to a rehab. Mum and I called her everyday to persuade her to eat.

Mum had congestive heart failure. She passed away in 2013, shortly after her 86th birthday. At which point, I finally had permission to move Barbara to a facility close to me and to become her healthcare proxy.

I learn about other families who have loved ones with serious mental illness.

As I researched places to move Barbara to in San Francisco, I called her everyday around one o’clock EST. It was ten in the morning for me. I did my best to encourage her to eat and deal with her fears. Often, her last words were, “Get me out of here.” I fought back the puddle of tears.

Looking for support, I joined National Alliance on Mental Illness (NAMI) and went to their group meetings. Parents and siblings with loved ones living with serious mental illness (SMI) — schizophrenia, bipolar disorder, and schizoaffective disorder — shared the struggles and obstacles to get treatment for a person with SMI. I learned that comprehensive care is a rarity. And if a loved one is over the age of 18, families are blocked from speaking with medical professionals because of the HIPAA privacy law. Their anguish was palatable.

Hospital policies designate the limited number of acute psych beds for persons who are a danger to themselves or others. If the person is gravely disabled, they become part of the revolving door system. They get help for a few days, are put back on the street, become sicker, or go to jail for a minor offense. What if that were my sister? I felt outrage at the inhumanity.

In fact, a friend suggested that I put my sister on the street, so she would qualify for help. The thought was crushing. I argued with her that I would never do that. She was insistent that this is the only way.  

I took NAMI’s Family to Family class. It was very informative. I found out about anosognosia, a mental disorder where the person is not aware they have mental illness. This certainly was the case for Barbara.

I am inspired to make a documentary.

As a teen, I took painting lessons.I went to the School of the Museum of Fine Arts in Boston. When I moved to San Francisco, I went to San Francisco State University, finished my degree, was accepted into the graduate program, and experimented with sculpture and site specific sculpture. I also took a class in poetry writing and started to write a play. At a workshop on playwriting, I heard the phrase, “personal as political.” This was it for me. I knew I wanted to use my art to make a difference.

The last Family to Family class focused on advocacy. At the end of the talk, our guest presenter asked if people wanted to get involved as an advocate. I raised my hand. “I want to make a documentary that tells our stories.” Everyone sitting around the conference table clapped.

Now, I’m working on my third documentary. PIECE OF MIND is about the internal and external barriers to care for persons living with serious mental illness. Stories are told through the compelling, intimate narratives of a mother whose son has schizophrenia and sprays chemicals on his body to kill germs; Japanese American siblings, with a sister shot by police when she refused to go to the hospital for evaluation of schizoaffective disorder, who take her case to the US Supreme Court; and a man, with bipolar disorder, whose failed suicide attempt leads to events that transform his life.

Couched in these deeply personal stories, are solutions to the dire consequences of this public health crisis. The quest for healing and normalcy sheds light on the larger issues of the lack of inpatient psychiatric beds, and the role of law enforcement in approaching persons in the midst of a psychotic break. PIECE OF MIND will inspire greater awareness and compassion, and serve as an advocacy tool for comprehensive mental health care for persons living with serious mental illness.

In April 2014, I got a call. Barbara fell, again. This time, she needed a partial hip replacement. I felt bad for her injury, but I instantly knew this meant that she had a physical disability and would qualify for MediCal to live in a skilled nursing facility. It took another year on a waiting list. Then, I moved my sister to a good facility near me.

Now, when I drive home from seeing Barbara, I feel good knowing I can help her with things. She always thanks me. She’s eating well. She’s on medication. And I try and roll with it when the delusions take over. Barbara’s never been homeless, or involved with the police. My sister is one of the lucky ones.

Visit www.pieceofmindfilm.com to watch the trailer and get more info.

Sheila Ganz, Director / Producer credits: Emmy-nominated documentary ON LIFE’S TERMS: MOTHERS IN RECOVERY, which follows five women in a residential treatment program, who are determined to learn recovery and parenting skills to regain custody of their young children.  www.onlifesterms.com  UNLOCKING THE HEART OF ADOPTION about the lifelong process of adoption for adoptees, first/birthparents and adoptive parents in same race and transracial adoptions.  www.unlockingtheheart.com  Contact: sheila.ganz@gmail.com.  

Sheila

Sheila

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