At first, Leslie Carpenter thought her son Patrick was on drugs. She was at home in Iowa City with her husband and about to go to bed when the phone rang. It was Patrick.

“Mom, I died. I’ve been reborn,” the 19-year-old told her. “I’m God. We need to go, and I need you to take me to see Obama and Oprah because I need to save the world.”

Not knowing what to think or say but suspecting something was wrong, Carpenter grabbed her car keys.

“I’ll be there in 30 minutes,” she said as she threw on some clothes to drive to Cedar Rapids. The boy on the phone that night six years ago was nothing like the fun-loving child she had raised. This wasn’t the baseball pitcher, the artist, or the Patrick who could quote movie lines verbatim.

Carpenter would soon learn Patrick was suffering from a complex mental condition involving many different disorders, including suicidal tendencies.

She also would discover that Iowa’s mental health program – even with its highly touted Mental Health and Disability Services Redesign of 2012 – couldn’t provide the help he required.

Patrick needed caregivers and providers who would make sure he did not hurt himself or others, that he would take his medication on schedule to lessen his delusional thoughts and that he received a variety of other intensive, individual attention.

Part of the problem Carpenter confronted was the result of what a recent state study called “a severe workforce shortage” in Iowa’s mental health services. That study, a progress report completed in December 2016 by the Iowa Department of Human Services (DHS), said Iowa ranks 47th nationwide in the number of psychiatrists per capita, a shortage that has prompted the state to provide $4 million to help train more.

The Iowa Office of Persons with Disabilities says about 126,000 Iowans age 5 or older suffer a mental or emotional illness serious enough to interfere with daily activities. Less than 1 percent suffer the multitude of severe, complex problems like Patrick’s and are underserved. Their needs represent the most significant hole in Iowa’s mental health care system.

Their struggles show how the hoped-for improvement envisioned in the redesign has fallen short, according to state government records, the DHS’s 2016 progress report and to interviews with mental health officials and patient advocates.

Although the DHS report gave the Iowa system mixed reviews, it also found what it called significant shortcomings and noted that some conclude it “is in crisis and failing Iowans with mental illness or disabilities, their families and their communities.”

The 2012 redesign scrapped the 99-county mental health system, which had created enormous service inequalities from county to county, and replaced it with 14 mental health regions, each responsible for providing its own services. It was implemented in 2014.

Redesign was supposed to provide equal and more personalized services at the community level to all Iowans, regardless of where they lived. But several shortcomings have emerged:

A new inequity has appeared, because the state doesn’t require all regions to provide needed services for Iowans with the most severe mental illnesses. Such patients are “underserved, precariously served or served in higher levels of care than they need,” the DHS report said;

Community-based mental health services are insufficient for individuals requiring higher levels of care; as a result, many patients are discharge because providers don’t have enough capability to serve them;

Virtually nothing substantive has been done to implement recommendations of 2014 legislative working group that studied the needs of those with serious mental illnesses;

After Gov. Terry Branstad closed two of Iowa four mental health institutes, the two remaining changed the kind of care they provide, causing a shortfall of needed services for individuals with complex problems that the institutes could previously provide.

“The governor and lieutenant governor see this (mental health) as a priority,” Ben Hammes, Branstad’s communications director, told IowaWatch. “So, we’ve included an increased level of funding.”

Asked specifically about alternatives Branstad had in mind for services that the closed two mental health institutes had provided, Hammes deferred to the Department of Human Services.

“We’re the executive branch; we’re developing policies, but implementation and transition of residents at institutions are handled by DHS. I’m not equipped to answer that specific question.”

He said, “We’re happy with the progress that’s been made” and said a new bed-tracking system to keep tabs on open beds is example. “We recognize … there’s always more to do.”

Carpenter, because of her experiences, said Branstad hasn’t done enough and that more is needed for people with multiple, complex problems like her son’s.

“I don’t think he gets it,” she said.

Julia Davis/IowaWatch

Iowa expects to spend $2 billion between fiscal years 2013 and 2017 for mental health services, with 75 percent being state funds. Much of that pays for part of the care of Medicaid recipients who are at or just above poverty level and suffer mental health and substance abuse problems. Medicaid is a joint federal-state program.

Leslie Carpenter’s trip through this new mental health bureaucracy began shortly before redesign on that unforgettable night in 2011 when Patrick made that bizarre call, and it continues today.

Patrick’s frightening behavior came from a delusional thought, the first of many and the first manifestation that she remembers of his illness, a mix of bipolar disorder and schizophrenia. It was a rare and debilitating combination, and it would affect his entire life and the lives of his family. Imaginary voices and auditory delusions haunted him. He struggled with manic psychosis, which created his a belief he was God. Other times, he slid into a depression that sometimes turned suicidal.

Because of multiple symptoms, Patrick bounced around many different arenas of the system, from hospitals to residential care facilities to mental health institutions. Carpenter found that, for individuals like Patrick, getting the right services is a crucial step toward becoming a functioning member of society.

That step wasn’t easy.

Over the past four years, the redesign has shifted Iowa’s mental health care system to a community-based approach to care, and patients suffering from disorders like Patrick’s got caught in that shift. Community-based services are meant to provide care closer to someone’s home, whether it’s in a smaller facility or in the person’s home, instead of in an institution.

REDESIGNING THE SYSTEM

The closing of two of Iowa’s four mental health institutions occurred during the shift.

Those closures in 2015 shuttered Mount Pleasant and Clarinda Mental Health Institutes, which served 71 patients combined, many with multiple, complex needs like Patrick’s. The plan was to offer some of their services in community settings like residential care facilities, which often house three to 14 patients in group homes with 24-hour care. That was the heart of redesign.

“The care is better at the community level,” Hammes, Branstad’s spokesman, said. “Families are better able to make decisions, and the patients are closer to home … .”

Amy McCoy, the Department of Human Services public information officer, said community settings are “where we look at doing the redesign and making sure that those regions have services available closer to where people live.”

So far, however, community-based services have not been able to meet increased demand, because of a variety of factors. They include: lack of staff and local intensive care services, a change in purpose for the two remaining institutions, and a lack of funding stemming from changes in the funding model of regional mental health care

Advocacy groups criticized the state for closing the institutions before it could provide adequate replacement services and for leaving a gap in service to those with severe mental illness.

“Those beds were occupied, so when they went away, those folks had to go someplace else,” said Ryanne Wood, the CEO for mental healthcare in the region of southeast Iowa. Her region serves Lee, Washington, Des Moines, Henry, Jefferson, Louisa, Keokuk and Van Buren counties.

Patients in the closed institutes faced two options: being transferred to one of the two remaining institutes or put in a residential care facility.

But the December 2016 DHS progress report raised concerns about the regional services’ effectiveness in caring for patients with complex needs.

“A small number of individuals with severe and multiple complex needs are inadequately served,” the report said. “Tragic events have occurred that could potentially have been avoided with better and more comprehensive services.” The report does not describe those events, but numerous news outlets in 2015 heavily reported that three patients died while being transferred from mental health institutes that were closed.

Iowa Department of Human Services graphic

HOSPITALS CAN’T TAKE UP THE SLACK

With the closure of the two mental health institutes, many patients with severe mental illnesses were relegated to acute care facilities in hospitals. These hospitals have psychiatric wards for patients with multiple, complex needs. But they often don’t have enough staff to handle them, said Suzanne Watson, CEO of the southwest Iowa mental health region headquartered in Council Bluffs. The southwest region serves Page, Mills, Pottawattamie, Harrison, Cass, Shelby, Montgomery, Monona and Fremont counties.

“It’s not about the number of beds; it’s about the number of staff available to treat people on the unit,” Watson said.

Leslie Carpenter has seen this first hand with Patrick, who has been in and out of the University of Iowa Hospitals and Clinics in Johnson County multiple times over the past five years.

Hospitals are quick to move patients along to free up resources for other acute patients, creating a cycle where patients are discharged too soon, only to end up back in the hospital due to their lack of treatment in the first place. Somebody walking in off the street may not be able to get into a hospital bed even though they’re suicidal or homicidal, because there are no resources available.

Submitted by Leslie Carpenter

“I’ve seen people literally discharged into cabs,” Carpenter said, referring to instances she’s witnessed at the University of Iowa Hospital and Clinics.

The answer, according to DHS spokesperson McCoy, isn’t simple.

“It’s a whole-system issue,” she said. “Expanding those services is where … the redesign is helping to do that in communities across Iowa.”

Even with emphasis on putting the right services in communities, some regions struggle to find replacements for what the closed mental health institutes provided. Wood, the Southeast regional CEO, said, “The services that have been developed are not a full and complete replacement.”

She said individuals with multiple complex needs have been de-institutionalized, and seem to have difficulty finding their place in community-based care. Often people with complex needs require caretakers with special qualifications. But the state doesn’t have enough community-based staffers capable of providing that level of care.

The results? “There are people who are in limbo, who are difficult to serve because we have a reduction in that knowledge base that does those services in the community,” Wood said.

WHAT COMMUNITY SERVICES LACK

Ideally, the redesign aims to divert patients from ending up in the hospital in the first place, several regional mental health chief executives told IowaWatch. Many patients sent to hospitals would do much better using community services, according to DHS.

A central motivation behind community services was to reserve hospital beds for acute psychiatric patients, while patients with less severe problems would get help in their communities in times of need.

The state categorizes these services as either “core” or “core plus” services.

Core services are basic: the law requires DHS’s mental health regions to provide all of them to Iowans with a mental illness or intellectual disability. They include mental health therapy, medication management, access to 24-hour crisis response, and similar activities.

Core plus services go a step further than core services; they provide help for people at a high level. But, the law does not require the regions to provide core plus services, and that is a critical problem, advocates say.

Core plus services includes nine activities, such as jail diversion and comprehensive crisis services, which includes 24-hour crisis support lines and a crisis stabilization facility. They are much more geared towards higher-need patients suffering multiple complex mental health issues.

Nine of the 14 regions provide fewer than half of the nine core plus services, according the 2016 Report. The report strongly urged the regions and Medicaid managed care organizations get funding to provide all services to people with mental illnesses or intellectual disabilities.

Mechelle Dhondt, CEO of Mental Health/Disability Services of the East Central Region headquartered in Cedar Rapids, said she has seen a large increase in use of crisis services in her region’s community settings instead of in hospitals. Her region serves Linn, Johnson, Dubuque, Benton, Bremer, Buchanan, Jones, Delaware and Iowa counties.

“The hospital, for mental health, is like it is for any other illness,” she said. “If you’re really sick, it’s the place to be, but if you’re not, people would rather be at home.”

These crisis services include residential crisis stabilization, which provides short-term helps for patients before they move back to their homes.

However, for patients who need a higher level of care, such as people who are assaultive to themselves and to those taking care of them, the regions still rely on institutional settings such as residential care facilities, or in extreme cases, the two remaining mental health institutes.

“Anytime you move people out of the community, it sets them back,” Dhondt said. “But we do have some people where institutes are really where they’re best served, but not very many anymore.”

For individuals with multiple, complex needs, like Patrick Carpenter, community services haven’t been enough.

“Every time they discharge him to his apartment they try to get him community services,” said his mother, Leslie. She recalled that Branstad once said: “ ‘Living in the community is so much better for people with illnesses’ – that’s what the governor’s quote is,” she said. “The problem is, there are no services that are enough for somebody as seriously ill as our son.” She said, “They just can’t handle him when he is severely ill.”

Submitted photo

Teresa Bomhoff of Des Moines, president of the Iowa Chapter of the National Alliance on Mental Illness, said she also is concerned about the systems’ ability to help patients with multiple complex needs.

“Unless you want to count prisons as the places for treatment, there’s really nothing in the public sector to handle those patients,” she said. “Some might be in hospitals because every hospital has rooms for aggressive patients, and they may get them somewhat stabilized eventually.”

But the problems arise when the hospital releases them. “There’s nobody who will take them because of their history of aggression,” Bomhoff said.

That’s been a common problem statewide, the DHS report found. It said, “inpatient psychiatric hospital programs often do not accept patients, not because there is a lack of beds, but because the hospital believes the individuals are too difficult for them to serve.”

CHANGING THE GOAL OF THE INSTITUTIONS

In the past, the state’s four mental health institutes served as a more permanent solution for patients with multiple, complex needs who weren’t doing as well with other services. However, the 2012 mental health system redesign shifted the purpose of the institutes from permanent care to short-term crisis management.

Now, those institutions are like hospitals, said McCoy, the state human services department spokesperson. “No one goes in with the intention of living there. You go in because you’re having acute psychiatric crisis, and our goal there is to get you out of crisis and get you stabilized in the community with the supports that you need to live successfully.”

But Bomhoff, from the National Mental Health Alliance, says that change represents a new government viewpoint that ties back to funding.

“The placement of last resort used to be the mental health institute,” she said. “Well, two of them are gone now, and they’ve really switched the purpose of the mental health institute,” she said. “I mean, they don’t want people staying there for a long time, because they don’t want to pay for it.”

FUNDING SHORTAGES

Overall, state officials say they have been paying an adequate amount for the mental health program, and surpluses occur in some regions. But some mental health advocates say the redesign plan’s changes to funding mental health care are hurting metropolitan counties.

Before the funding changes, mental health money came from what counties levied per county resident for mental health care. Funding also came from the joint federal-state Medicaid program, which pays for health care costs for the poor, including those with mental health and substance abuse problems. Until the redesign, Iowa had been making its 99 counties pay the state share of the Medicaid program.

Lyle Muller/IowaWatch

Under the redesign, state government started picking up the Medicaid tab, freeing up millions of county dollars for mental health programs, according to Bomhoff. Meanwhile, the federal government’s Affordable Care Act allowed Iowa and all other states to expand the Medicaid program to greatly increase access to metal health care and mostly at federal expense. Now, Medicaid reaches people earning up to 138 percent of the federal poverty level.

The final change, which involved the county levy for mental health, was designed to make sure each county had the same proportionate amount of money for mental health. That change is causing controversy.

Before redesign, each county levied whatever amount it desired up to $47.28, which meant Iowans in some counties got more and better mental health services than Iowans in others. To fix that inequity, the redesign called for the state to make up the difference for counties that had levied less than $47.28. [Ed. note: Wording in this paragraph was changed 4/14/17 to better reflect the situation before and after redesign.]

About half of Iowa’s 99 counties, including populous ones such as Polk, Linn, Johnson and Story counties had not levied the maximum. The state appropriated $30 million for fiscal years 2014 and 2015 so that all regions received equal mental health funding. That funding created sizable surpluses in nearly all regions.

But then the Legislature did not provide equalizing money for fiscal 2016 and 2017. But this lack of funds particularly affects those populous urban areas , which are now millions of dollars short and cannot keep up with providing services to residents, according to Bomhoff.

“We have the metropolitan counties really struggling,” she said. “Because what’s happened is people are moving out of the rural areas, and they move to metropolitan counties, and there was never any adjustment in the levy to help pay for that.”

She didn’t anticipate this turn of events.

When the state freed the counties from providing the state’s share of Medicaid funding and established the regional system, “it seemed plausible” to believe that the regions would have enough money to serve people already in their programs and build services. “But with this whole levy thing … we didn’t anticipate that it still wouldn’t be enough.”

On the plus side of the funding picture, the Medicaid program’s expansion, which is called the Iowa Health and Wellness Plan, was spending $67 million per year on behavioral health services. That includes mental health and substance use disorder services and provides help for 35,360 individuals whose services were previously the responsibility of the mental health regions, according to DHS.

As a result of that shift, the number of Iowans whose mental healthcare is funded by Iowa’s mental health regional system has gone down since the funding responsibility has now carried by Medicaid.

These budgetary measures have allowed regions the extra funds to focus on increasing core plus services. But the DHS progress report said these funds still have not been adequate to come up with lasting programs for individuals with multiple complex needs.

LOOKING AHEAD

The 2016 progress report by the Department of Human Services identified the issue of serving individuals with multiple complex needs and highlighted that solutions are available, as evidenced by successful programs in other states. It said:

“Across the nation these individuals are often safely, appropriately, and successfully served in intensive integrated service settings that have a combination of 24 hour, seven-day-a-week staffing supervision and guidance, and extensive professional treatment and oversight.”

It also said Iowa should increase the number of services and improve access.

After the report’s release last year, DHS announced that a work group of mental health professionals, representatives of the Medicaid program’s for-profit managed care organizations and state officials to discuss strategies to help Iowans with complex needs.

The department also says its needs authority to require regional offices and the three managed care organizations “to collaborate to develop and operate a unified system.”

Bomhoff said she’s concerned that if the state mental healthcare system creates services to address the problem, funding will remain a problem.

“The DHS wants the regions to pay for any solutions, but that comes with a whole host of funding and access issues.”

As someone who has worked in mental health arena throughout adoption of the redesign, Wood, the southeast Iowa regional chief executive, said it is essential to recognize the level of support required to care for individuals with complex needs. She said policy makers must understand “that some folks will not be successful ever living in the community, that they need a higher level of support, and that higher levels of support have to be funded and structured in a sustainable way” to meet the treatment needs of that small population of people.

Patrick Carpenter is now living in the mental health wing of a Dubuque residential care facility, where he was recently moved after a stints at a residential care facility in Fayette and then the state mental health institute in Independence this past fall and winter. With the changes to Iowa’s mental health system, his mother Leslie wants to see the state do a better job of prioritizing the needs of individuals like her son.

“As a society, we are all better off and better humans if we take good care of these people and keep them as healthy as possible. Because then they’re not out there. They’re not homeless. They’re not committing crimes. They’re not ending up in the jails and prisons,” she said.

“These people actually can be productive citizens if we do a better job of taking care of them at each level that they need over the course of their illness. We could do this so much better than we do right now.”

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This IowaWatch story was republished by The Hawk Eye (Burlington, IA), The Courier (Waterloo-Cedar Falls, IA), The Gazette (Cedar Rapids, IA), Dyersville Commercial, Cascade Pioneer, Manchester Press, OskyNews.org and KMAland.com under IowaWatch’s mission of sharing stories with media partners.