Why I Support Prop 1

This is a long update. It is personal, not political. It is an explanation for why I support Prop 1.

#DannyDay

We had a nice #DannyDay x 4 home visit last weekend. However, it wasn't without stress for him and us. My hubby and I have both been sick with bad colds so we were not feeling like going out and about and entertaining Danny. I did take him out a couple of times for his favorite food, Starbucks, etc. But, it was a pretty low-key, boring couple of days. We pointed out to him that this is what it's like to live with aging parents who just want to hang out at home.

The downtime did allow us all to spend some time talking about how he was doing, feeling, and thinking. He is struggling.

He is struggling with cravings for drugs but doesn't want to use them. He is emphatic that he wants to stay sober but is having a hard time. He likes Psynergy VDR and the staff but wonders if he should try someplace else. He doesn’t know where. He is afraid of failing if he stays or moves.

He is struggling with the medications he is taking and wonders if he needs them all. He talks about only wanting a couple of mood stabilizers that he took after his first psychotic break. They used to work. They don’t anymore. I asked him if he wanted to talk to his psychiatrist about lowering some of his meds. He says no.

He is struggling with low energy and constantly seeks caffeine. He is in a program that supports very healthy eating but he likes junk food and sweets. I let him eat pretty much what he wants when he’s home. We eat healthy and he likes my cooking. But, he prefers tacos from the local taco truck. I always make sure he gets them when he comes home.

He says that he is struggling with breathing at times even though he quit smoking. I encourage him to talk to staff and Dr. We encourage him to exercise. He says he wants to jog again but doesn’t think he can. His dad works out 6 days a week. Me, not as much anymore. I will get back on track. I am just in a slump. I want to jog again too but don’t think I can.

And, he is struggling every day with the trauma of losing control of his life over 20 years ago. He talks a lot about his time in jail and the music he listened to. “Mama I’m Coming Home” by Ozzie Osborn was one of his favorites. He said it used to make him cry but he knew I would help him come home. I did help to keep him out of prison and finally sleep in his own bed again. But, he is still not home, home. We just aren’t sure where his forever home is. But, we will keep searching.

But, Danny is lucky, right? He is not living on the streets. He is not in prison or jail. He is not in a locked facility. And, aren’t those the best measurements of a quality life for someone living with SMI/SUDs? Yes, but not the only ones in my opinion.

Why doesn’t anyone measure suffering or the reduction of the secondary symptoms of schizophrenia? The MHSA claims that the reduction of suffering is one of its “core values.” But, if someone needs medically necessary treatment to prevent suffering, you need luck and heroics to get to the right place, at the right time.

We are told he needs people, place, and purpose. We agree. And, we try to support his decision-making. So, do we support his decision to live independently? Do we support his decision to stop the medications he is taking (it’s a lot?) Do we support his decisions even if they are bad decisions? That’s the so-called “dignity of risk” that the disability rights community embraces.

Here are a couple of Google references about the “dignity of risk;”

1. “What is the meaning of dignity of risk?

What is dignity of risk? Dignity of risk is another way of saying you have the right to live the life you choose, even if your choices involve some risk. If something you want to do involves some risk to you, your aged care provider should support you and your representative to understand the risks and manage them.

2. “What is dignity of risk for individuals with a disability?”

Dignity of risk is the idea that taking reasonable risks is essential to learning new things and supporting autonomy for people with disabilities. Risk should be balanced with ensuring the person's health and welfare. Mar 9, 2023”

Ah, balance. What a concept. Where is the balance in the system of “health and welfare” for families like mine?

Danny has been diagnosed with learning disabilities, schizophrenia, plus a substance use disorder. He doesn’t always learn from his mistakes or make safe decisions. But apparently, care providers are supposed to “understand the risks and manage them.” I have been trying to do that even before he was born and ever since. I have been trying to help him become UNgravely disabled ever since he was first put on an LPS Conservatorship when he was 19. But, the California mental health system wasn’t set up for “people with disabilities” like Danny’s. It needs to be modernized.

I want my Danny and all people with disabilities to live with their rights on. We want him to have voice and choice. But, you can’t have either one if you are dead. That is why I fought for the Care Act, MHSA Modernization, LPS Reform, and support Prop 1. That’s why I want a system of Housing That Heals for families like mine.

By putting everyone with an SMI/SUD under the same “behavioral health” or “people with disabilities” umbrella, we have risked too much dignity for the gravely disabled population. California designed a mental health system where we managed not to care enough for the gravely disabled who don’t have access to the same funding and support as the IDD population.

MHSA was the promised entitlement for the SMI. It has helped many. But, it has also been wasted and misused. It needs to be modernized and integrated with other funding streams to create a whole system of mental health care. That was the promise to voters when we passed Prop 63/MHSA in 2004. The MHSA was never supposed to be a stand-alone funding stream or create a two-tier system of haves and have-nots. Rose King knew that and she was right.

I have heard so many presentations about Prop 1 this past week. Some are better than others. But, the fear is feverish and the misinformation is stunning. Lies are called perspectives. And clear bias is presented as neutrality. So much gaslighting! I prefer to hear facts.

Here is a CNN interview with Governor Newsom yesterday. The Mental Health reform discussion begins at 7:02, https://www.cnn.com/.../the-lead-gavin-newsom-homeless.... He provides historical context and whole system reform facts. He is pushing big time on the status quo. I am with him.

I was called a “Karen,” a “racist” and a “deluded mother” this past week on social media because I support Prop 1. It's okay, I know who I am and what I am. I am used to blame and shame when I have pushed against the status quo as an SMI advocate. And, I will keep pushing because nobody can defend the status quo that is killing our gravely disabled loved ones who deserve the right care, at the right time, right now. No more waiting!

Vote yes on Prop 1

No = Status Quo

P.S. Danny wanted to watch the promo for the film, “No One Cares About Crazy People” when he was home. He is going to be in when it's done. We watched it together. He got to learn about Kevin and Dean Powers, the Powers family, the Burgos family, Mark Rippee, the Rippee family, Senator Susan Eggman, and Governor Newsom. And, when he saw me come on screen and speak in the film, he lit up. He said, “Mom, you were great.” People have a lot of opinions about me right now but Danny’s opinion is the only one I care about.

Here is the promo: https://noonecaresfilm.com/

As Catherine Hanson Rippee said, “Change is coming, it has to,

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