Spring walk.
Hope you have a good weekend everybody!
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Spring walk.
Hope you have a good weekend everybody!
NSSC is a nonpartisan alliance of diverse individuals and organizations who are uniting to ensure that mental illness, health, and criminal justice systems count those with SMI, SED, and their families in all federal, state, and local policy reforms. We are voices for the 10 million adults and 7 million children living with and dying too young from serious mental illness.
March 22, 2019
The Honorable Fred Upton
2183 Rayburn House Office Building
Washington, DC 20515
Dear Mr. Upton,
Our coalition is approaching you today in an effort to persuade you to introduce a bill which would clarify the cost of untreated and under treated serious mental illness (SMI) in America. We refer to this as “The Cost of Not Caring.” This bill would ask our federal, state and local governments to provide a report detailing the exact amount of monies allotted each fiscal year to address the effects of untreated serious mental illness on our society.
Our coalition is currently attempting to quantify the personal cost to our families related to caring for a loved one with a serious mental illness. Through a conjoined effort, we are calculating the cost of items such as out of pocket mental health care costs -- i.e., lost wages, psychiatric services required for caregivers and family members, homes lost to second and third mortgages to gain treatment or to pay legal fees, and 401Ks/Retirement Accounts that have been exhausted because of the need to secure help for a loved one with SMI. These are just some examples of overlooked expenses that we are personally left to deal with when we are responsible for a person with a serious mental illness who is not receiving proper care.
However, we cannot assign a dollar amount to unquantifiable costs -- such as, the marriages that have been destroyed, the family relationships that have fallen apart under the stress, the careers destroyed and jobs lost, the physical injuries or deaths of family members and others inflicted by those with SMI--and the dreams and futures of our loved ones that have been shattered when serious mental illness presents itself. These expenses we understand all too well.
We need your help to address the other expenses; the ones that are affecting our nation. We would like you to introduce a bill that would require an account of the actual total expense that untreated mental illness has on our society as a whole. This is going to be a formidable task, but one that must be accomplished. We need to determine exactly what the cost of not caring is having on our society. We hope that having an accountable system of recorded expenditures will help our government finally understand that being proactive, rather than reactive in the treatment of serious mental illnesses, not only makes more sense on a humanitarian level, but also on a financial level.
Particular areas of interest that this bill should address listed as sample costs -- at federal, state, and local level:
1. Cost of physical illnesses. Please bear in mind that 75% of persons with SMI have at least one chronic physical illness, 50% have two, and 33% have 3 or more.
2. Cost of homelessness with the focus on persons with untreated SMI, including costs to courts, police, prisons, judicial systems, and medical systems.
3. Cost of not allowing for AOT (Assisted Outpatient Treatment) to treat those who suffer from serious mental illness and anosognosia living with family, including contact with police, crisis services, and courts when we cannot get help for our loved ones. Involvement of treatment teams, in communities where those resources even exist, who continue to engage with patients are often necessary several times a week because patients are in crisis, but there is no improvement when patients are refusing medication.
4. Cost of SMI for patients who go through revolving doors--in and out of hospitals and emergency rooms because they are not treated early enough and/or not kept long enough to stabilize them.
5. Cost of criminal justice involvement among persons with SMI with and without treatment.
6. Cost of disability payments.
7. Cost of lost income.
8. Cost to family members who bear much of the emotional and financial burden of these illnesses.
9. Cost of healthcare for co-morbid conditions such as substance use disorders (SUD’s).
10. Cost of the loss of productivity due to premature death or those with SMI who are institutionalized, incarcerated, or homeless.
We look forward to hearing from you and hope that you will accept this challenge. The time for us to quantify these costs is now so we can have a discussion, to detail its finer points, and move forward with a strategic plan that includes accountability for “The Cost of Not Caring.”
Sincerely,
National Shattering Silence Coalition
https://www.facebook.com/NationalNSSC/
Full disclosure: Dede Ranahan is member of the NSSC Steering Committee.
Click on the link below to see Sherri’s video of what her son’s apartment looks like when she checks in on him.
https://www.facebook.com/sherri.mcgimsey/videos/10214387428258897/
This video shows just a small piece of what fighting to keep your child, with brain disease, alive looks like.
Our Beautiful Mind was med compliant, yet the meds were not working. The VA MHICH (Mental Health Intensive Case Management) team visited every week. A nurse came to give Matt injections every two weeks. One said to me, “Your level of clean is different from another’s.” He was not her child.
We talked every day. We saw him almost every day. We cleaned every week. (The cost to hire someone to clean up bodily fluids was prohibitive.) Matt threw up “the evil,” for years, when he lived in our home and then when he lived, independently, in our community. He was isolated living with us and isolated living alone.
Today will be day 486 of 22 veterans dying by suicide each day, and Day 486 we’re thankful we still have our son. Tomorrow, Matt gets a pass. Today, he’s the best he can be due to care and treatment he’s receiving.
I’ve learned, if you’ve not lived it, you’ll never really understand the struggle. So I’m sharing our struggles, hopefully, for more understanding, more facilities, and more crisis teams. I’m not sure what more I can do, until laws are changed and people truly believe that taking care of our weakest is more cost effective than not caring.
Every day I learn a little more, and this angry mom simmers. What if Matt had received the proper care after that first psychosis? I take deep breaths and hang onto hope that younger moms never have to fight this hard, or have to worry if their child will live to see another day.
Cure schizophrenia. We have to do better and we need your help.
Moon light.
Hope you have a good weekend everybody!
I have been sick for three long days. Not from the flu, although it knocked me out just as much as a flu would. Not from the heartbreak of losing a relationship. I know how much that hurts, and this pain is similar, but my relationships are fine.
I have not lost anything or done anything wrong, but my brain is filled with thoughts of what a total mess I am in life.
Not one thing has happened to create this sickness. There are no obvious triggers. No problems. No diet changes or weather changes. Nothing has happened.
I have been sick for three long days from my bipolar disorder.
I did everything I could to get out of it. I used the ideas in my books. I asked for help. I changed locations. I let others know that my brain wasn't working. I got upset. I tried to be nice to myself. I did it all!
It took three days for my brain to get back on track. Three long days of frustration and pain. That is our life with this illness. I still kept going. I did the work that had to be done and put off the work that had a few days leeway. I simply had to wait it out.
It's so painful. It's so hard. It's so unfair. It is all of these things.
I can either accept it — this is my life — or give up and not do all I can to reach my goals.
I choose to accept it and keep going. My brain lies to me. It is not a reliable source — it tells me things about myself and my work that are not true.
What is your plan for when your bipolar is active and your brain is lying?
Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. She writes for Bp Magazine and was the original consultant for the Claire Danes character on Homeland. Julie lives with bipolar disorder and a psychotic disorder. Her official diagnosis is schizoaffective disorder. Her goal is to find stability in daily life. Please visit www.JulieFast.com for more information on her work.
My wonderful, heavenly angel son, Shane Watkins (39), was shot by Lawrence County Deputy Steven Moody because he thought all people with mental illness were dangerous.
My son called 911 saying I threatened to kill him and his dog. I told 911, “We have no guns in the house and please tell the cop not to kill my son.”
When the cop got out of his truck, he had his gun in his hand. I was standing in the doorway. My son was standing by my car. I begged the cop, “Please don’t kill my son.” Not even five seconds later, he shot my son three times in the chest. One bullet went into the hood of my car. Then he pointed the gun at me and threatened to kill me, too. March 19, 2015.
The police report stated that I said my son attacked me but he didn't. The police report said my son attacked the cop but he didn't. I'm still praying for justice and still waiting to get another court date. The last one was cancelled.
I just came to the cemetery to put flowers and Alabama memorabilia on Shane’s grave. Since he loved steak, I’ll eat a steak in honor of his life.
My love and prayers for all the mothers who have lost a child. Thank you for your support and for sharing your losses.
Which way’s forward?
Hope you have a good weekend everybody!
I hope I can find some comfort in knowing I’m not alone.
My son, Joey, was just sent to Patton State Mental Hospital after spending seven months in San Diego County jail for trying to break into a car. (He’d been living in transient camps in San Diego County.) He makes $640 a month on SSI, not nearly enough to cover rent, basic needs, and food. He refuses to live at home because "I am an adult,” and he doesn’t want to be a burden.
At the jail, he was found incompetent to stand trial. I was reluctant about Patton but hopeful that maybe he would receive some long-term help. And maybe, just maybe, he would receive the care and education he needs to maneuver this world as a person with mental illness, and to be at peace with the wonderfully different person he is.
Come to find out, the only care and assistance Joey will receive, beyond medication, will be how to participate in court proceedings — not to yell out during court, not to speak unless spoken to — and how to understand the charges against him . That’s it. No life skills, no education on his condition or how to recognize triggers, nothing. My son sleeps all day and doesn’t have to participate in the court school, but that will make his stay longer.
My hopes were quickly deflated and we’ll be in the same boat as prior to this arrest and many others. Joey will go to court, be found guilty of another felony, released on time served (it’s already been close to a year for a felony that, at the discretion of the court, could have been reduced to a misdemeanor because his attempt to break into the car failed). He will be released, again, to the streets. There is literally no where else for him to go — except home with us which he refuses to do.
A vicious cycle. I’m prepared for Joey’s death, which is the worst and most helpless feeling. I don’t know what the answer is. I do know, for me, it’s not over until he’s at peace, healthy, and living the best life possible for him. He deserves at least that.
On Sunday, I drove the backroads to California State Prison, Folsom. I’d missed my February visit with Travis because I was sick, and I was eager to see him. The day was wondrous — blue sky, inspirational clouds, bright green grasses growing on every available patch of soil. Water poured, with force, over the dam at Folsom Lake. I tried to not think about climate change and to enjoy the earth as it was presenting, gloriously, before my eyes.
As I pulled into the prison parking lot, I reminded myself of the routine — fill out a visitor’s pass, replenish the prison credit card for the vending machines, check in at the desk, show my driver’s license, get my right wrist stamped, sit down, and wait for Travis’s name to be called.
As I waited, I read a chart on the wall. Not Allowed: sunglasses, electronics and cell phones, scarves and gloves, hats and beanies, underwire bras, skinny jeans and leggings, jewelry, blue or green clothing. An officer appeared and called out “Travis Christian.”
I stepped to the door to enter the scanning room. “You can’t come in,” the guard said to me. “You’re wearing blue.” I was wearing blue — navy blue slacks and a navy jacket. The prisoners wear light blue shirts. “Light blue,” I protested. “Sorry, no blue,” came the reply. “You’ll have to leave and change clothes.”
Oh, boy. “I drove from Lincoln. I can’t go all the way home and back again.”
“We have a friendship center across the parking lot. The white building. You can go there and get a change of clothes.”
Thought I was becoming a pro at this prison-visiting thing. Guess not. I walked across the parking lot to a small building with a wood ramp leading to the front door. Inside, a woman sat at a desk. “You need clothes.” I signed in. Ten people had already signed in ahead of me because they needed clothes. A man came out of a back room and handed me black sweatpants and a black top with IZOD printed on its long sleeves. “We close at 2 p.m.”
Back across the parking lot in my new prison attire. One other woman joined me on the shuttle bus. After she departed, the driver said, “She’s pissed. She’s had to change clothes three times this morning.”
Okay. So things could be worse.
At 12:15 p.m., Travis entered the visiting room. We hugged. “This visit’s gotten screwed up,” I said. I explained the clothing fiasco. “I’ll have to leave earlier than usual to get back and pick up my clothes. Let’s get you something to eat.”
Travis selected pre-packaged quesadillas from the vending machine and a coffee drink. “I’m really glad to see you,” he said. “I was worried about you.” We talked quickly because there was lots to catch up on. Rooster, the previous cellie, was gone. Lawrence, the new cellie, “is a really nice guy. I’m taking a college history course, by mail. I got an A on my first paper. I was having trouble concentrating, but I’m feeling much better since my doctor changed my meds. She lowered my lithium and increased my thyroid prescription. My mom came last week and we had a really good visit. A friend here loves bridge. I told him you sent me bridge information. He wants to borrow it. I got some mail.”
I told Travis he looked good, better than he did at my last visit. He asked about my book. I brought him up to date. “I’m hoping to get it out there for Mother’s Day. It’s a learning curve and an adventure. We’ll see where it goes.”
Time to leave. Back across the parking lot to change into my own clothes. A woman walked with me. She wore black sweatpants and a black top. “It appears you shop where I shop,” I said. She visits her husband every week and, today, the guard declared that her dress was “too short. Your husband may be respectful, but we never know about the other guys. We don’t want any situations, you know.”
To return to his cell from the visiting area, Travis walks between buildings. As I left, I’d said, “When you’re outside, go slowly. It’s a beautiful day.”
“I will,” Travis said. “I will.”
You can read more about my visits with Travis. They’re listed in the Archives on the right.
Travis looks forward to receiving mail. You can write to him at this address:
Travis Christian
BB8099
B-5-229
California State Prison-Sacramento
P.O. Box 290066
Represa, CA 95671
Snowbird
Hope you have a good weekend everybody!