An Iowa gap: Treating complex mental health needs

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 her son was suffering from a complex mental condition involving many different disorders, including suicidal tendencies.

She would also discover Iowa's mental health system — even with its highly touted 2012 redesign — couldn't provide the help he required.

Mental health redesign in 2012

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 a multitude of severe, complex problems like Patrick Carpenter's. Their needs represent the most significant hole in Iowa's mental health care system, according to mental health officials and patient advocates.

A 2016 report by the Iowa Department of Human Services (DHS) gave Iowa's mental health care system mixed reviews but found 'significant shortcomings' and noted some people say the system '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 between counties, replacing it in 2014 with 14 mental health regions, each responsible for providing services.

The shortcomings

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

l The state doesn't require 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.'

l Community-based mental health services are insufficient for individuals requiring higher levels of care. As a result, many patients are discharged because providers don't have enough capability to serve them.

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

l After Gov. Terry Branstad closed two of Iowa four mental health institutes in 2015, the two remaining facilities changed the kind of care they provide. That caused a shortfall of needed services for individuals with complex problems — the kind of care the institutes previously provided.

A state priority

'The governor and lieutenant governor see this (mental health) as a priority,' Branstad spokesman Ben Hammes told IowaWatch. 'So we've included an increased level of funding.'

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.

But some mental health advocates say the redesign plan's changes to funding mental health care are hurting metropolitan counties because state money made available in equal amounts to all regions doesn't account for higher populations in some counties, officials said.

HOSPITALS CAN'T TAKE UP 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.

'It's not about the number of beds. It's about the number of staff available to treat people on the unit,' Watson 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.

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. 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.

'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 Amy 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.'

WHAT COMMUNITY SERVICES LACK

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.

Nine of the 14 regions don't provide the full extent of services outlined in the redesign, according to the 2016 report.

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 the use of crisis services in Eastern Iowa community settings.

'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.'

For patients who need a higher level of care, such as people who are assaultive to themselves or their caregivers, the regions still rely on institutional settings such as residential care facilities, or in extreme cases, the two remaining mental health institutes.

'We do have some people where institutes are really where they're best serve, but not very many anymore,' Dhondt said.

LOOKING AHEAD

After the DHS report's release last year, the agency appointed a 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 it needs authority to require regional offices and the three managed care organizations 'to collaborate to develop and operate a unified system.'

Patrick Carpenter now is living in the mental health wing of a Dubuque residential care facility, where he recently moved after a stint at a residential care facility in Fayette and then the state Mental Health Institute in Independence.

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.'

This story was produced by the Iowa Center for Public Affairs Journalism-IowaWatch.org, a nonprofit, online news website that collaborates with Iowa news organizations and which received a Fund for Investigative Journalism grant for this report.