The 21st Century Cures Act that gained congressional approval on Wednesday has been championed as a way to speed up drug development, but it’s also the most significant piece of mental health legislation since the 2008 law requiring equal insurance coverage for mental and physical health.

The bill includes provisions aimed at fighting the opioid epidemic, strengthens laws mandating parity for mental and physical health care and includes grants to increase the number of psychologists and psychiatrists, who are in short supply across the country.

It also would push states to provide early intervention for psychosis, a treatment program that has been hailed as one of the most promising mental health developments in decades.

“It is time to fix our broken mental health care system,” says Sen. Bill Cassidy, R-La., a physician whose mental health bill was folded into the 21st Century Cures Act.

Sen. Chris Murphy, D-Conn., who worked with Cassidy on the bill, says he hopes to alleviate the suffering of people with serious mental illness.

“I’d heard too many devastating stories of people struggling with serious mental illness and addiction whose lives were forever changed because they couldn’t get the care they need,” Murphy says. “I’d seen up close the heartbreak and frustration that families suffered trying to find care for a loved one — care that seemed impossible to find and even harder to pay for.”

But Rep. Frank Pallone, D-N.J., says he’s concerned that proposed Republican changes to the health care system could undercut any progress made by the bill. Millions of Americans with mental illness could lose coverage if Congress repeals the Affordable Care Act or cuts spending on Medicaid, which pays for about 25 percent of all mental health care, he says.

Many mental health advocates celebrated the bill’s passage.

Ronald Honberg, national director of policy and legal affairs at the National Alliance on Mental Illness, called the bill’s mental health provisions “necessary and promising.” He says he appreciates the bill’s focus on “preventing the most horrific consequences of untreated mental illness,” including homelessness, incarceration and suicide.

The bill generally requires states to use at least 10 percent of their mental health block grants on early intervention for psychosis, using a model called coordinated specialty care, which provides a team of specialists to provide psychotherapy, medication, education and support for patients’ families, as well as services to help young people stay in school or their jobs. Research from the National Institutes of Health shows that people who receive this kind of care stay in treatment longer; have greater improvement in their symptoms, personal relationships and quality of life; and are more involved in work or school compared to people who receive standard care.

The bill also sets up a $5 million grant program to provide assertive community treatment, one of the most successful strategies for helping people with serious mental illnesses such as schizophrenia. Like the early intervention program, assertive community treatment is designed to provide a team of professionals that is on call 24 hours a day. The bill also expands a grant program for assisted outpatient treatment, which provides court-ordered care for people with serious mental illness who might otherwise not seek help.

Although the bill authorizes these grants, a future Congress would have to approve funding for the programs. “The fact that a program has been authorized is no guarantee that it will be funded,” Honberg says. “It’s a necessary first step.”

Mental health advocates will lobby for Congress to approve funding for the most critical programs, Honberg says.

While funding treatments for mental illness is expensive, “it’s more expensive to ignore it,” says Rep. Eddie Bernice Johnson, D-Texas, who co-sponsored mental health legislation in the House that folded into the 21st Century Cures Act.

Other sections of the bill, based on legislation introduced by Sen. John Cornyn, R-Texas, give communities more flexibility in how they use federal grants. For example, communities could use community policing grants to train law enforcement officers to deal with patients in the midst of a psychiatric crisis. Another provision would require the U.S. attorney general to create at least one drug and mental health court pilot program, which would aim to help people with mental illness or drug addiction receive treatment, rather than jail time, after committing minor offenses.

The legislation will help “those suffering from mental illness in the criminal justice system can begin to recover and get the help they need instead of just getting sicker and sicker,” Cornyn says. “This bill also encourages the creation of crisis intervention teams, so that our law enforcement officers and first responders can know how to de-escalate dangerous confrontations. This is about finding ways to help the mentally ill individual get help while keeping the community safe at the same time.”

The mental health provisions have been scaled back significantly since they were first introduced.

An earlier version of a bill introduced in the House of Representatives would have changed a federal privacy law to allow doctors, under certain circumstances, to share mentally ill adults’ medical information with their family caregivers. Doctors today often shut families out of their loved one’s care, refusing to share even basic information, such as appointment times, for fear of violating the Health Insurance Portability and Accountability Act, or HIPAA.

Many health professionals misunderstand HIPAA, refusing to listen to the families of patients who are too disabled by psychosis to provide key details of their medical history, says Rep. Tim Murphy, R-Pa., who first introduced the House bill in 2013 in response to the shootings at Sandy Hook Elementary School in Newtown, Conn.

Some advocates for the disabled objected to that change, however, arguing that patient privacy is essential, and that people might avoid care if they believe their doctors might disclose confidential information.

The legislation instructs the secretary of the Department of Health and Human Services to clarify when doctors can share patients’ medical information with family caregivers, as well as educate health care providers about what the law actually says.

“It’s a step in the right direction,” Honberg says. “There is so much misinformation about HIPAA. It’s one of the most mischaracterized laws out there.”

The bill also aims to better coordinate mental health care. Although eight federal agencies today fund 112 programs that provide mental health care, these agencies rarely coordinate their efforts to make sure patients get the help they need and to avoid duplicating services, says Tim Murphy.

The bill would make structural changes to the way federal agencies provide mental health services:

• A new committee would link leaders of key agencies involved in mental health care, such as the Department of Veterans Affairs, the Department of Justice and the Substance Abuse and Mental Health Services Administration, or SAMHSA.
• A new position — the assistant secretary for mental health and substance use — would oversee SAMHSA and promote the most successful approaches to treating mental illness.
• An advisory board, the National Mental Health and Substance Use Policy Laboratory, would analyze treatments and services to help decide which ones should be expanded.

Chris Murphy said he wishes the final bill had included more resources for outpatient mental health care, as well as for inpatient hospital bills for people in psychiatric crisis. He also said the current bill provides a starting point but that he hopes Congress will continue working to improve mental health care in its next session.

“This doesn’t solve all the problems in the mental health system,” says Chris Murphy, noting that Congress may still need to change the HIPAA law to allow families to better care for people with mental illness. “We may still have to look at this down the line.”

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Before he went to prison, Ernest killed his 2-year-old daughter in the grip of a psychotic delusion. When the Indiana Department of Correction released him in 2015, he was terrified something awful might happen again.

He had to see a doctor. He had only a month’s worth of pills to control his delusions and mania. He was desperate for insurance coverage.

But the state failed to enroll him in Medicaid, although under the Affordable Care Act Indiana had expanded the health insurance program to include most ex-inmates. Left to navigate an unwieldy bureaucracy on his own, he came within days of running out of the pills that ground him in reality.

“I have a serious mental disorder, which is what caused me to commit my crime in the first place,” said Ernest, who asked reporters to use only his middle name to protect his privacy. “Somebody should have been pretty concerned.”

The health law was supposed to connect Ernest and almost all other ex-prisoners for the first time to Medicaid coverage for the poor, cutting expensive visits to the emergency room, improving their prospects of rejoining society and reducing the risk of spreading communicable diseases that flourish in prisons.

But Ernest’s experience is repeated millions of times across the country, an examination by The Marshall Project and Kaiser Health News shows.

Most of the state prison systems in the 31 states that expanded Medicaid have either not created large-scale enrollment programs or operate spotty programs that leave large numbers of exiting inmates — many of whom are chronically ill — without insurance.

Local jails processing millions of prisoners a year, many severely mentally ill, are doing an even poorer job of getting health coverage for ex-inmates, by many accounts. Jail enrollment is especially challenging because the average stay is less than a month and prisoners are often released unexpectedly.

Ex-inmates with the worst chances of getting insurance and care are in 19 states that did not expand Medicaid. Only a few qualify for coverage. Enrollment efforts by prisons and jails for them are almost nonexistent.

Nationally, some 375,000 inmates leave state prisons every year with minimal or nonexistent Medicaid signup programs, according to a survey by The Marshall Project.

Failure to link people leaving jail or prison to health insurance is a missed opportunity to improve health and save money on care, advocates say. Better care also helps by reducing recidivism. Studies show Medicaid access in Florida and Washington cut return trips to jail among the mentally ill by 16 percent.

Advocates for improved sign-ups argue, What better place to enroll people eligible for Medicaid than a building where they’re already assembled?

“I hate to say it — it’s a captive audience,” said Monica McCurdy, who as head of a clinic for Project HOME in Philadelphia sees homeless, recently released prisoners without Medicaid coverage. “You have somebody there! You know they’re going to be released in a few weeks. Why not do the handoff that’s needed to prevent this person winding up in the ER? It defies common sense.”

Health Risks Soar After Release

Before the Affordable Care Act, Medicaid covered mainly children, pregnant women and disabled adults, which included only a small number of ex-offenders. That’s still generally the case in the 19 states that didn’t expand Medicaid.

President-elect Donald Trump has vowed to repeal the health act and replace it with something else, leaving the law’s Medicaid expansion and eligibility for ex-prisoners in doubt. Rep. Tom Price, Trump’s pick to head the health and human services department — which oversees Medicaid — has been one of Congress’s most vociferous critics of Obamacare.

But some analysts expect parts of the law to survive, perhaps including Medicaid expansion managed more directly by states than by Washington.

Even some Republicans have supported the expansion of Medicaid, suggesting that revoking its coverage from millions of new recipients would be difficult. Republican Gov. John Kasich expanded Medicaid in Ohio in part for ex-inmates, he has said, “to get them their medication so they could lead a decent life.”

Other parts of the health law received more attention, but advocates saw giving Medicaid coverage to ex-inmates as one of its most transformative aspects. Illness for illness, inmates are the sickest people in the country.

They have far higher rates of HIV, hepatitis and tuberculosis than the general population. They’re also more likely to have high blood pressure, diabetes, and asthma. More than half are mentally ill, according to the Bureau of Justice Statistics, with up to a quarter meeting criteria for psychosis. Between half and three-quarters have an addiction problem.

Prisons and jails have their own doctors, but their responsibility to provide care stops upon an inmate’s departure. Inmates generally aren’t eligible for Medicaid while imprisoned.

No time is more critical than the days immediately after release. One study showed that in the first two weeks, ex-prisoners die at a dozen times the rate of the general population. Heart disease, drug overdose, homicide and suicide are the main causes.

But even in states that expanded Medicaid, the most vulnerable and sometimes dangerous ex-inmates are often left on their own.

Ernest went to prison for shooting and killing his daughter amid a psychotic religious delusion. Re-enacting the biblical story of the sacrifice of Isaac, he thought God would intervene to save the girl. News reports from the time say police found him naked, carrying the child’s lifeless body through the streets of an Indianapolis suburb.

Indiana expanded Medicaid under the health law in February 2015 and set up a system to enroll all eligible prisoners upon release. Yet when Ernest got out in August 2015, he was not enrolled in Medicaid, let alone connected to doctors.

Prison officials say they applied for Medicaid on Ernest’s behalf, but Medicaid records show he applied when he got home. It’s not clear where the system failed.

“It is important that the offenders have some accountability in the process,” said Douglas Garrison, a spokesperson for the Indiana Department of Correction. “The IDOC has worked diligently to ensure released offenders are receiving coverage.”

Ernest’s letters to Medicaid and a clinic before he got out didn’t help. He had to start the application process from scratch after he got home, making increasingly frantic calls and scrambling to find his birth certificate and other paperwork as his supply of lithium and perphenazine, an antipsychotic, dwindled.

“Somebody who’s committed a violent felony because of a mental illness is getting out of prison, and we don’t have anything set up yet?” said Ernest, whose Medicaid coverage was authorized a little more than a month after his release. He’s now living with his brother and looking for work.

Failure to sign up ex-inmates for health care are repeated every day in states that expanded Medicaid under the health law, even in places such as Indiana where agencies have provided enrollment assistance.

No Enrollment For Thousands Of Chronically Ill People

Two-thirds of the 9,000 chronically ill prisoners released each year by Philadelphia’s jails aren’t getting enrolled as they leave, said Bruce Herdman, medical director for the jails. The city also lacks the $2 million necessary to supply a month’s worth of medication for released inmates with prescriptions, he said.

“They give you like two weeks’ supply of medication,” said Ricky Platt, 49, who left the Philadelphia jail in 2015, quickly ran out of Zoloft, an antidepressant, and became homeless. “They don’t give you any resource of where to go or get a doctor and get your prescription filled or anything.”

Emergency doctors at Thomas Jefferson University Hospital in Philadelphia often see released inmates with kidney failure who are at risk of dying if they don’t receive dialysis almost immediately, said Dr. Priya Mammen, one of the hospital’s emergency physicians.

“We’re kind of the go-to spot for many people, but particularly for people who have been released from prison,” she said. “Either in the first week we see them or when their prescriptions run out.”

Kara Salim, 26, got out of the Marion County, Indiana, jail in 2015 with a history of domestic-violence charges, bipolar disorder and alcoholism — and without Medicaid coverage. As a result, she couldn’t afford the fees for court-ordered therapy.

Without therapy she wasn’t allowed to see a psychiatrist for her medications. Without medication she spiraled downward, eventually threatening suicide at a court hearing. When court officers tried to bring her to a psychiatric hospital, she erupted, kicking and scratching them and landing back in jail, with new felony charges: battery against a public safety officer.

“I wish I could tell you she’s the exception,” said Sarah Barham, an addiction counselor with Centerstone, a nonprofit that provides behavioral health services in Indiana.

Medicaid enrollment requires resources that many prison systems and local jails — often overcrowded and operating in crisis mode for years — lack or have been reluctant to commit.

“Most of the county sheriffs don’t have the proper staff they need to even run the jails,” said Bill Wilson of the Indiana Sheriffs’ Association. Many jails are making an effort, but in some places “pulling the resources out to enroll an inmate in Medicaid is not something the sheriff’s able to do.”

Seven states — Minnesota, Alaska, Hawaii, Arizona, Montana, Louisiana, and Illinois — expanded Medicaid but have not implemented a large-scale enrollment program.

In many states, even successful prerelease registration requires a follow-up visit to a local Medicaid or welfare office to activate the coverage on release. Obtaining a phone, paying for minutes and navigating bus lines to state offices can be daunting for newly released inmates, who often struggle with basic needs such as food and shelter.

Indiana officials applied for Medicaid on behalf of more than 7,000 state prisoners from March through September — nearly 90 percent of those released. (Many of the others were released to other states or deported, officials said.) Yet only a little more than half called to activate their coverage when they got home, according to state data. The state says in recent weeks it eliminated the requirement to activate coverage with a call.

William Santee, 46, released from Pennsylvania state prison this year, has diabetes, high cholesterol and high blood pressure. He learned about Medicaid enrollment requirements and the need to visit a welfare office from workers at a homeless shelter.

The prison “didn’t tell me about where to go or anything like that,” he said. “They don’t consider that their responsibility.” Waiting in line and completing the welfare-office paperwork took five hours.

Getting The Details Right

Almost as critical as successful enrollment is choosing a Medicaid plan that covers medicines and services ex-inmates need. Jail and prison workers are rarely equipped to wade through such details.

“That’s a huge issue for us,” said Susan Jo Thomas of Covering Kids and Families, a nonprofit that helps enroll people in Medicaid in Indiana. “You finally get a person to the place they are ready to make the decision to go into detox, but if they have aligned with an insurance company that doesn’t cover the medicine that program uses, then you have a problem.”

A few states and localities reap praise for innovative and comprehensive attempts to enroll emerging prisoners in Medicaid.

Ohio recently finished phasing in Medicaid registration at all state prisons and is one of the few states giving inmates a managed care insurance card as they leave, said John McCarthy, that state’s Medicaid director. Chicago’s huge Cook County jail puts prisoners on the Medicaid books as they enter, rather than before they leave, to sidestep the common problem in jails of unpredictable release dates.

More often the process looks like what was happening one recent Friday in Indiana’s Marion County jail, where Lt. Debbie Sullivan was trying to rouse sleepy women to sign up for health insurance.

The document she distributed was three pages long, authorizing a Medicaid application on inmates’ behalf. It asked for names, addresses, birth dates and Social Security numbers. The handwritten information would later be entered into computers — a recipe for transposed digits and misspelled names.

“The program remains a work in progress,” said Katie Carlson, a spokeswoman for the Marion County Sherriff’s Office, which runs the jail. “It has proven a daunting task to enroll, track and provide meaningful information on both Medicaid and health care.”

Such sessions require a half-hour or more, so inmates can get the details right, pick the right plan and learn how to follow up with doctors and insurance officials after release.

Sullivan’s knowledge of the women’s next steps was minimal. In response to questions, she simply told them to contact their local social service office when they get out. She walked out of the block with about 30 signed applications. It was over in 15 minutes.

“Thank you ladies!” she called on her way out, as the heavy steel door slammed behind her.

Marshall Project interns Deonna Anderson, Josiah Bates, Jonathan Gomez and Rachel Siegel contributed research to this article.

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