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Perhaps the best definition of advocacy was voiced by Eleanor Roosevelt(quote): “You must do the things you think you cannot do.” In facing the stigma and shame that still surrounds mental illness, we are tested by many challenges. Each of us has had to break through boundaries of fear and convention to help our family member; each of us has felt the discrimination that exists against people who have brain disorders. In our struggle to “stand with” and “stand up for” our loved ones, we are all advocates.

Letter to the Editor    (as seen in the St. Louis Post-Dispatch)                                                     10-30-2015

New Mental Health Research Makes a Strong Case for Medicaid Expansion

Findings from new research into identifying and  treating psychosis (schizophrenia, bipolar illness and depression with psychotic  features, etc.) when first symptoms emerge are dramatic. The National Institutes for Mental Health (NIMH) sponsored study Recovery After an Initial Schizophrenia Episode (RAISE)  suggests early detection and prompt treatment can “stop psychosis in its tracks”,  interrupt disease progression and allow patients to resume reasonably normal lives.

This is groundbreaking new information calls us to fundamentally change how Missouri pays for and  delivers mental health treatment and services. While the Affordable  Care Act  makes prompt treatment accessible to the insured, uninsured Missourians who work low wage jobs are left behind. Their inability to pay for care leaves them vulnerable to disease progression and  lifelong disability.

Psychotic symptoms usually emerge in late adolescence or young adulthood when people are working  low wage entry level jobs, often without health insurance.  Lack of insurance coverage puts early treatment out of reach to thousands of young Missourians in this vulnerable age group.  Missouri’s  Medicaid program denies coverage to healthy childless young adults, no matter how poor. Missouri is so stingy that  a mother of two with annual income of $5000 is considered too wealthy to qualify for assistance.

Today in Missouri an average of ten years  pass before a young adult receives effective, consistent treatment and services.  When treatment is delayed, psychosis progresses.  Neural pathways related to illness are forged and reinforced, allowing disease to progress and making it harder to treat. Unless early symptoms are addressed promptly, disability is the typical outcome. Young adults with symptoms cannot afford to wait until they are disabled enough to qualify for Medicaid coverage due to disability.  For many, expanding Medicaid to cover treatment as soon as symptoms emerge is their only hope of living a  reasonably normal life.

The RAISE study findings make a strong case to reform Medicaid eligibility to cover low wage and poor young adults and remove a major barrier to prompt treatment.    In failing to do this we leave thousands of low income and low wage young adults with no way to pay for the mental health treatment that could prevent disease from permanently disabling them.

Respectfully submitted,

Cynthia Keele, executive director



How Did NAMI Priorities Fare?

The 2016 legislative session ended at 6:00 p.m. on Friday, May 13 with some of the best results we have seen in recent years. Big thanks go out to NAMI advocates and colleagues for a fulfilling legislative session!

Missouri lawmakers approved an increase for the Department of Mental Health’s Strengthening Mental Health Program. This will pay for a boost to the emergency room enhancement (ERE) initiative and more Community Mental Health Liaisons (CMHLs). Monies were also approved for a 3% provider increase for mental health, substance abuse and developmental disabilities providers.

The Mental Health Crisis Project, a proposal NAMI MO has been watching very closely, won approval. A request to waive Medicaid rules has been submitted. If approved, some uninsured 21-35 year olds with mental illness or substance addiction disorders will get Medicaid coverage and recovery-oriented community services. The project will serve approximately 2000 uninsured individuals with low incomes. Participants must be referred by a CMHL or through an emergency room participating in the state’s ERE program. It is hoped this project will be up and running by the end of August, 2016. Monies were also approved to keep the waiting list for in-home services for people with developmental disabilities at zero.

Late in the session a group of mental health advocates (including NAMI MO’s Scott Perkins and NAMI St. Louis’ Jackie Hudson) fought back a proposal that would have imposed restrictions on atypical antipsychotic medications in Medicaid. Medicaid recipients with mental illness will continue to be able to get the antipsychotic medication they and their doctors find most effective. This provision in MO law may be challenged again next year. Stay tuned.

HB 1565, the bill to increase the asset limit in Medicaid from $999 to $2000 for an individual, passed! The $999 limit amount was set in 1967, based on 1967 dollars.

Thanks to passage of SB 646 public school teachers will be able to count two hours of suicide prevention training toward their annual continuing education requirement and school districts will now be required to develop suicide prevention plans.

An amended version of HB 2029 passed! This bill will allow physicians to override managed care step therapy (or fail first) medication coverage policies in certain instances. Step therapy requires individuals to “fail” on cheaper medications before a more expensive medication will be covered by an individual’s managed care plan.

Lack of action toward closing Missouri’s insurance coverage gap was our biggest disappointment this session. It is estimated that 300,000 uninsured Missourians could receive coverage if Medicaid eligibility were extended to 138% of the poverty level (approx $15,800 annually). According to a March 2013 MO DMH report, nearly 50,000 of these uninsured are people with mental health needs. Many are young adults between the ages of 18-30 with developing mental illness such as schizophrenia or bipolar disorder. Our public health system does not serve young adults well because they are often uninsured and have no means to pay for their treatment. For now, Missouri’s Medicaid program will remain one of the stingiest in the nation. A mother with two children and just $4000 in annual income will continue to be considered too wealthy for Medicaid health coverage.

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