But against this backdrop, state governments are quietly working with grassroots advocates to save thousands of lives in the absence of congressional leadership. And that story has yet to be widely reported.
States are doing what my organization and I called for last year, circumventing a federal law that denies equal protection to millions of Americans in a way that is going unnoticed amidst the current chaos of local and state politics.
Last week, Maryland became the eighth state to obtain a Medicaid waiver to help people with serious mental illness. The institutions for mental diseases (IMD) exclusion is not familiar to the average taxpayer, but it is a discriminatory federal law that has denied mental health services to low income individuals since the mid-1960s. The IMD exclusion prevents federal Medicaid funds from covering inpatient psychiatric care. It was ironically meant to help people with mental illness, but it is killing them instead.
Congress created the IMD exclusion to incentivize community-based treatment and prevent unnecessarily restrictive hospital stays. Community-based treatment is a vital part of treating any brain disease, but people with the most severe cases of mental illness—such as schizophrenia, bipolar disorder, schizoaffective disorder and other psychotic disorders—still need some inpatient care to be stable and thrive.
The IMD exclusion precludes access to that care, leaving emergency rooms, and all too often, jails and prisons as the main providers of care that should have been given in a psychiatric hospital. By the time a person reaches an emergency room or is incarcerated due to their mental illness, it is often too late to provide effective health care denied to them by Medicaid when they first needed treatment.
Now the states are doing the work that the federal government refuses to do: counteracting a dangerously anachronistic law and saving lives.
Advocates for people with mental illness, along with state Medicaid departments, are not waiting for Congress to fix their immediate problems. Federal law prohibits the use of Medicaid funds on inpatient psychiatric care, but states can obtain permission to bypass that requirement. Maryland did so because of families who are fed up with trying to get help for a loved one with mental illness only to find there are no hospital beds available.
Every second that someone with mental illness, in a psychotic state, is denied treatment poses a risk that they will not live another day. Maryland listened to the testimony of those families and obtained a workaround that will allow low-income individuals access to psychiatric services that federal law has denied them for the better part of six decades.
But a workaround is not enough. Congress should repeal the IMD exclusion that allows Medicaid funds to treat every other health condition while banning spending on the most vulnerable. People with serious mental illness are more likely to die from primary care conditions, suicide, be victims of violent crimes, or suffer at the hands of law enforcement.
This discriminatory federal statute also withholds mental healthcare services from people of color at a disproportionate rate. People with mental illness are already disadvantaged by having an involuntary brain disease and federal Medicaid law denies them life-saving treatment. People of color with mental illness face a two-headed monster of increased risk of death during police interactions due to their race and the fact that they are sixteen times more likely to die in those encounters because of their mental health status.
These unjust outcomes are why Congress must repeal the IMD exclusion and why advocates are turning up the pressure on state governments to find an answer until Congress acts.
In the meantime, other states should follow Maryland’s lead. While Congress has given no indication it will act soon on legislation to end this federally sanctioned discrimination, states can continue to pursue Medicaid waivers that will allow hospital care for people with mental illness. With only eight state Medicaid departments having obtained those waivers so far, grassroots advocates must apply pressure to their respective states.
These advocacy victories are not won on Capitol Hill, at the White House, in statehouses, or, as recent events might imply with inflammatory demonstrations before school boards and local councils. Instead, the life-saving activism is with state bureaucrats who have the power to bypass the IMD exclusion and help people get the mental health services they need.
Michael Gray is legislative and policy counsel at Treatment Advocacy Center, a leading mental health nonprofit dedicated to eliminating the barriers to timely and effective treatment of severe mental illness.