PLEASE JOIN THE CONVERSTAION ON MY FACEBOOK PAGE by Dede Ranahan

The following is an ongoing discussion on my personal Facebook page - Dede Moon Ranahan. If you’re on Facebook, please click on my page and join the conversation. Or enter your comments through the comment link below. Or send your comments to me in an email: dede@soonerthantomorrow.com

SMI (SERIOUS MENTAL ILLNESS) ADVOCATES AND SUPPORTERS

GOAL: This effort is short-term. To get SMI recommendations for a national SMI plan before the 2020 presidential candidates (Republican, Democrat, Independent). None of them are currently talking about SMI (not mental health, not drug addiction). SMI. The SMI community is looking for a candidate/s who will champion SMI and its concomitant issues. With adults and children impacted and their immediate families, we represent roughly 72 million people in the US.

THE ASK: That candidates talk about SMI in their campaign appearances and debates and post a national SMI plan on their campaign websites.

To encourage them, we'll be submitting a cover letter, one-page outlined/bulleted plan, references and resources to aid them in developing their plan, and if they will read that far, the full list of 18 topic areas.

RESULTS OF YOUR VOTES FOR THE TOP 5 ISSUES FOR A ONE-PAGE PLAN:
1) Reclassification of SMI as neurological brain disorders
2) IMD (Institutes for Mental Disease Exclusion)
3) HIPAA Reform (Health Insurance Portability and Accountability Act)
4) Continuum of Care
5) Decriminalization of SMI

NOW WE MUST REFINE THIS TOP 5 LIST.
PLEASE ANSWER 1 OR MORE OF THESE QUESTIONS IN A FEW SENTENCES:
1) Why is reclassification of SMI important?
2 )Why is IMD repeal important?
3) Why is HIPAA reform important?
4) Why is a Continuum of Care important?
5) Why is Decriminalization of SMI important?

1) Name one specific action a president can take to advance the reclassification of SMI.
2) Name one specific action a president can take to advance IMD repeal?
3) Name one specific action a president can take to advance HIPAA reform?
4) Name one specific action a president can take to advance a Continuum of Care?
5) Name one specific action a president can take to advance the Decriminalization of SMI.

Thanks, Dede

1. RECLASSIFICATION OF SMI
-Reclassify schizophrenia and related disorders as neurological conditions or neurobiological brain disorders. Eliminate “behavioral health” nomenclature.


2. HIPAA (Health Insurance Portability and Accountability Act)
-Reform current HIPAA laws.
-Present patient and family with a social worker to support the family unit throughout the care process including medication and psychiatric treatment.
-Require mandatory training for everyone in the medical profession about HIPAA and a required test on proven knowledge.
-Develop a federal program for the administration of a psychiatric advance directive (PAD) which includes a universal release of information and designates an agent if capacity is lost. Must include enforcement mechanisms to require mental health/illness facilities to follow the directives.

3. IMD (Medicaid’s Institutes for Mental Disease Exclusion)
-Repeal it.
-To prevent warehousing, use unscheduled check-ups on those receiving services.

4. A FULL CONTINUUM OF CARE
-Early intervention at all stages of illness.
-Provide Inpatient (IMD waivers), Outpatient (ACT, FACT, PACT, AOT, Clubhouses), Housing (full array from locked stabilization to unlocked intensive, medium intensive, peer-run PSH, Asylum).
-Require a psychiatric standard of care for various SMI diagnoses like other medical specialties. Diagnosis should be staged as cancer is.
-Provide more long-term care.
-Remove ER’s as entry for mental health hospitalization. The ER process and chaotic environment are not conducive to the well-being of SMI patients.
-Give federal assistance to states providing supportive housing.

5. DECRIMINALIZE SMI
-Eliminate solitary confinement in jails and prisons.
-Support nationwide civil mental health courts and expand criminal ones that are already established to keep SMI out of jails and prisons.
-Establish mental health courts on a federal level, and coordinate federal courts and state-run mental health facilities.
-Move crimes that SMI commit in the federal system into state courts.
-Provide a digitized system to connect county/hospital medical records to jails and prisons.
-Mandate a way for families to provide medical history to jail/prison doctors to inform treatment.
-Provide uniform psychiatric screening of the incarcerated and use standardized protocols for medication of SMI prisoners.
-Require strict limits on waiting for trial time.

I'M PAST ANGER. I'M IN COMPLETE DESPAIR by Linda Rippee

I’m struggling. I’m not sure I’m the advocate for serious mental illness (SMI) that I need to be. I’ve not been successful. I see no change in my brother's life. Another advocate suggested I not focus on the horror's of Mark’s story. I know nothing else. My husband thinks I keep pushing, pushing, pushing the ball up the hill and every time the ball slips back down. Crushing me.

I offer suggestions to others, but what do I know? Really? I’ve not been able to help my own brother In three decades. What good advice could I give? None.

Two weeks ago, several people witnessed Mark in the middle of the street. He was delusional, screaming, beating his makeshift cane in the middle of traffic with injuries to his face, eye socket, and hands. I rushed there and called Adult Protective Services (APS). I don’t know if they responded. Three weeks ago, Solano County deemed my brother "competent". 

Two days ago, more people notified me that my brother was in bad shape. He appeared to have been injured or beaten. I called APS, again. They said, “Don't call us. Call Vacaville Police Department.” I did. The dispatcher said, “We could send an officer to check on him, but if he doesn’t want medical treatment or help, that’s his right.”

After all my advocating, I still can't initiate a welfare check on my brother, let alone a 51/50. People contact me and my twin and expect action. I may be inadequate for this task. The county has given us their final word. I’m lost right now. I can’t find the words anymore to make a difference. Love hasn’t changed anything. My love is not enough to change Mark’s life or the world he lives in.  

Some people seem to be amused, skeptical, and doubtful that anosognosia exists as part of SMI. This is why we need HIPAA reform. Not to take away everyone's rights, but to allow families of the SMI to get proper treatment for the loved ones who cannot comprehend decisions or consequences with their own brains.

I’m exhausted trying to open and change minds on this matter. I’m past anger. I’m in complete despair. I can’t accept that this is my brother’s life, and people are okay with that. That alone weighs me down. We’re desensitized as a society.

Solano County says change must come from the state of California or from the federal government. Serious mental illness and brain diseases affect more people — professionals and the general public — than other diseases. It’s insidious. Society cannot afford to ignore it. Serious mental Illness will not be ignored. It doesn’t care what political party you favor. It doesn’t matter if you have the most loving family or what race or religion you are. It will infect you and has no qualms about affecting all who love you and come in contact with you.

I'm exhausted trying to open and change minds. The only minds we touch are of the families who already know the despair and pain of members they love with SMI. The ugly truth is, if people don’t have loved ones with SMI, they can’t hear us. It’s like we’re speaking a different language.

Society, we don’t need more awareness. We need more action!

Linda’s brother, Mark. Linda says, “Mark’s face and head are held together with wires and metal plates. He lost both eyes, but they had one eye still connected by a sliver, so they tried to save that globe. It didn’t work and he’s 100% blind. Mark’s head was split T-shape across his face and eyes and he lost most of his frontal lobe. Through 55 other surgeries, he lost further brain matter. He has a metal rod from crotch to ankle. Most say he looks like Frankenstein. I still look at him, directly, — where the eyes to his soul used to be.”

Linda’s brother, Mark. Linda says, “Mark’s face and head are held together with wires and metal plates. He lost both eyes, but they had one eye still connected by a sliver, so they tried to save that globe. It didn’t work and he’s 100% blind. Mark’s head was split T-shape across his face and eyes and he lost most of his frontal lobe. Through 55 other surgeries, he lost further brain matter. He has a metal rod from crotch to ankle. Most say he looks like Frankenstein. I still look at him, directly, — where the eyes to his soul used to be.”

Note: AB 1769 — This bill just died in committee. It would have appropriated money to be used to plan, construct, and operate two integrated mental health residential facilities adjacent to the county’s existing health and social services campus. There’s no mental health facility for Solano County.

A LETTER TO SHARE OR TO COPY AND PASTE by Dede Ranahan

TO ALL 2020 PRESIDENTIAL CANDIDATES:

I often hear discussions about mental health awareness, but don't hear discussions about serious mental illness (SMI). 
With SMI, (schizophrenia, schizoaffective disorder, bipolar disorder, 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 roughly 5% (10million) of the mentally ill in the US. And ten times as many people with SMI are incarcerated as are hospitalized. These individuals don't get the attention they deserve and consistently fall to the bottom of the proverbial heap.

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 exclusion repeal (beds), HIPAA 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 support will have the courage and insight to raise SMI issues and to create a plan to deal with them on a national scale. 

What is your plan for SMI? (Not mental health. Not drug addiction.) I would like to read about it on your website. Thank you for your prioritization of SMI issues.

If you agree, please share widely. Or copy and paste.

#seriousmentalillness #SMI #schizophrenia #schizoaffectivedisorder#bipolardisorder #depression #OCD #parityinmentalhealthcare #IMDrepeal#HIPAAreform #braindiseaseresearch #treatmentnotincarceration#soonerthantomorrow

http//www.bit.ly/soonerthantomorrow

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

ACKNOWLEGMENTS FOR SOONER THAN TOMORROW (Coming Soon) by Dede Ranahan

My book, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life, has been six years in the making. In a few days, it will become available on Amazon. The journey continues.

A C K N O W L E D G M E N T S

(page 445 in Sooner Than Tomorrow)

First, thank you to my son, Patrick. Thank you for your poetry, your Facebook posts, and your life. You’re the most courageous person I’ve ever known.

Thank you to my daughters, Megan Mace, Marisa Farnsworth, and Kerry Joiner, for reading Sooner Than Tomorrow and giving me permission to put it out there, sharing our family with the world. Your endorsements mean everything to me.

Thank you to everyone I mentioned in the telling of my story. We’re all in this thing we call “life” together.

Thank you to early readers: Ann Hedrick, Pat West Guinn, Kathy Hayes, Mary Lyn Rusmore-Villaume, Rosemary Sarka, and Irene Underwood. You gave me the cojones to believe in myself.

Thank you to the cheerleaders, those of you read my book excerpts week after week at soonerthantomorrow.com and sent me emails, text messages, cards, and letters: Joan Andersen, Tama
Bell, Chris Biswell, Judy Bracken, Madeleine Cunningham, Bev Chinello, Deborah Fabos, Anne Schmidt Francisco, Heidi Franke, Sheila Ganz, Jeanne Gore, Joyce Herrerias, Swannie Hoehn, Rose King, Nancy Krause, Joan Logue, Grace McAndrews, Jan McKim, Mary Murphy, Fran Neves, Liz Noel, Teresa Pasquini, Den Proudly, Karen Riches, Mary Sheldon, Stace Shurson, Sandy Turner, Kimberlee West, Annette Williamson, and to so many more of you who left comments, likes, and loves on Facebook. You kept me going, especially on the days when I thought, what am I doing?

Thank you to Sharon Lefkov, Kerry Joiner, and Michele Joiner for proofing my pages for spellings and typos. Thank you to my little brother, Jim Moon, for bringing my old photos back to life. Acknowledgments also to Sue Clark, my first editor, who read every page out loud with me and assured me, “Yes, this is interesting.” And to the Lincoln Library writer’s class who listened, in the beginning, when Pat was still with us.

Special hugs to Pat’s Facebook friends.

Thank you to Michele DeFilippo and Ronda Rawlins at 1106 Design for your professionalism and guidance.

And finally, thank you to all of you—those I know and don’t know—who are reading Sooner Than Tomorrow. Readers are the whole point of writing. The why in the what if.

—Dede Ranahan

P.S. Love to my heroes—the millions of mothers of the seriously mentally ill who fight for their children every single day.

1467751036697-1.jpeg