Please share and use my comments, delivered to the CA 1115* (explanation below) Stakeholder Advisory Committee, to educate and advocate for families like mine in California. Feel free to forward them to Governor Newsom, your state representatives, your local board of supervisors, your local NAMI chapters, faith communities, district attorneys, law enforcement agencies and to anyone who will listen and learn and help us stop the inhumanity. Tell them about my Danny and how he survived solitary because he received long-term care in a IMD (Institution for Mental Disease).
The IMD Exclusion* (explanation below) is the nexus to the criminalization of serious mental illness. It defunded adequate hospital care 50 years ago and incentivized the SMI (Serious Mental Illness) patient to prisoner pipeline. It is not civil and it is not right.
FEBRUARY 13, 2019
My name is Teresa Pasquini, a local state and national advocate for people who live, heroically, with severe mental illnesses. I am here, today, to urge this committee to support families like mine from around the state who are calling on Governor Newsom, the legislature, DHCS, CSAC, CBHDA, and all county leaders to apply for the IMD Exclusion Demonstration Waiver for the SMI/SED (Serious Mental Illness/Serious Emotional Disturbance) population as soon as possible.
If we want a California for all, then we need a psychiatric continuum of care for all. And all must mean all. If we are truly going to prevent, intervene, integrate, and transform the disparities in the health and criminal justice systems in California, then we must focus on the most seriously mentally ill population. We must agree to not only complete the community mental health system, but to also rebuild the psychiatric hospital-based systems. This should be a both/and, not an either/or priority. This new waiver provides this opportunity.
Following the Newtown tragedy in 2012, families from across the country united to lobby Congress and tell our stories. Many of us believe that serious mental illness is the greatest health disparity of our time. We believe that understanding the implicit bias, cultural disparities, and system prejudice against all people with serious psychiatric disorders is critical to transforming the systems that have led to the trans-institutionalization of our loved ones.
Few people understand the legal and fiscal discrimination against people with serious mental illnesses in California. They know that we have a lot of money from Prop 63 and ACA but they don’t know that federal and state parity does not apply to those on Medicaid and Medicare. They don’t know that public community services are only funded “to the extent resources are available.” Few people understand that, when we cut the 1991 Realignment budget to fund other entitlements, we prevented counties from providing adequate, medically necessary treatment in a mental health rehabilitation facility for people with SMI. Few people understand that the IMD Exclusion prevents federal funding for long-term psychiatric hospital beds; or the direct correlation between the closing of hospital beds and the increase in mental-health jail cells.
But, I understand it because I am the proud mom of a 36-year-old son, who lives with schizoaffective disorder, and has spent the majority of his adult life in locked facilities throughout the state including two state hospitals, PHFs (psychiatric health facility), MHRCs (mental health resource center), and county jails. Because my son’s right to treatment has been waived, he’s been failed, jailed, and criminalized. He’s been insured by Medicaid and determined to be disabled because of his illness since the age of 19. However, until recently, that hasn’t guaranteed him access to the continuous, medically necessary treatment he needs to fully stabilize and live in the community. The archaic IMD Exclusion has discriminated against my son and families like mine for too long. It is not civil and it is not right.
So, I urge a different policy mindset on the local, state, and federal level for the SMI population. This is a moral moment when all stakeholders must unite to stop the deliberate discrimination that incentivizes the current human log jam in our jails, prisons, hospitals, and streets. This new waiver opportunity will bend both the cost and the harm curve in our state for many, and truly create a system of whole-person care.
Teresa Pasquini, mom
Co-founder, Right 2 Treatment/Mental Illness FACTS, Family and Consumer True Stories
NOTE: The IMD Exclusion is part of the 1965 Medicaid Act that prevents the use of Medicaid as a payment source for certain psychiatric inpatient facilities. In November 2018, The Centers for Medicare and Medicaid Services(CMS) announced the availability of a 1115 demonstration waiver that would allow 30-day stays in IMDs for SMI/SED (Serious Mental Illness/Serious Emotional Disturbance) Medicaid enrollees. The State Medicaid Director Letter #18-011 provides formal guidance on this opportunity, https://www.medicaid.gov/federal-policy-guidance/downloads/smd18011.pdf.