November 1, 2021
Dear Senator Ron Wyden, and other members of the Committee on Finance:
This is in response to your request for input from stakeholders to help you better understand how Congress can address behavioral health care challenges.
First, thank you, Senator Wyden, for keeping at it. I’m sure you don’t remember, but back in the late 1990s you intervened for my son who was delusional and psychotic in Oregon. He died in a California hospital psych ward in 2014. He never did receive the help he needed for schizo-affective disorder. In the interim, I became a mother bear and mental illness activist. I’ve written two award-winning books, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life (Nautilus Book Awards Gold Medal Winner, Memoir, 2019) and Tomorrow Was Yesterday, Explosive First-Person Indictments of the US Mental Health System — Mothers Across the Nation Tell It Like It Is (Nautilus Book Awards Silver Medal Winner, Social Change, Social Justice 2020). The second book includes stories from 65 mothers from 28 states, and a fifteen-point plan to address serious mental illness (SMI - schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, etc.). The plan was developed in 2019 by advocates/activists from across the country.
In January 2021, 150 Tomorrow Was Yesterday readers, from every state in the nation, volunteered to send a copy of the book to the White House (Joe Biden, Jill Biden, Kamala Harris, Xavier Becerra, and individual legislators) thinking 150 copies of the same book from every state might get someone’s attention. Five months later, we all began receiving form letters from the White House thanking us for our “gifts” and for welcoming Joe Biden to the Presidency. No mention of the topic. No reference to the books. It was hurtful and insulting.
The 15-part plan was prioritized by the participants. The number 1 priority on their list is to "Reclassify Serious Mental Illness (SMI) from a Behavioral Condition to what it is, a Neurological Medical Condition." Until we look at SMI through a biological/physical lens, the significant changes we users of the system need will not happen.
I’m not trying to specifically address the questions you’ve posed in your letter. The SMI Plan cuts through all of them. More significantly, it raises issues not included in your list. The suffering in the SMI community (11-13 million diagnosed individuals plus their families) is intense. We’re screaming to the heavens for help. So far, no one seems to be listening.
Summary from Tomorrow Was Yesterday:
“As it stands today, the US mental health/illness system is filled with political landmines and gut-wrenching divisions: parents vs. children, peer organizations vs. family organizations, voluntary vs. involuntary treatment concepts, psychiatrist vs. psychologist turf wars, state vs. federal jurisdictions, HIPAA restrictions vs. parental rights, lack of beds vs. incarceration, unions vs. providers, psychiatry vs. anti-psychiatry, civil rights vs. dying with your rights on, NIMBYism vs. housing, traditional medicine vs. holistic medicine, and funded advocacy organization vs. unfunded grassroots advocacy efforts. I watched my son Pat die because the system is tied up in bureaucratic and philosophical knots.”
I would be happy to send you a copy of Tomorrow Was Yesterday which includes the 15-point plan to address SMI. My hope is that you, and others on the committee, might read our stories, take the plan seriously, and pursue some of its recommendations. It’s a beginning. It’s from the people in the trenches -- the sufferers, the families, the folks the system is supposed to help.
Thank you for reaching out. Let me know if/where I should send a copy of Tomorrow Was Yesterday.
Sincerely,
Dede Ranahan
Available on Amazon