A deal that changed lives — but not for all

For a year of her life, Linda Ferguson lived in a booth at a transit stop. She spent another year living under a bridge.

Her homelessness, she says now, “was a bad situation. Nobody likes to be outside. It’s a very insecure feeling.’’ At one point Ferguson, who deals with severe anxiety attacks, lost her car to theft. Later, her personal belongings were taken.

But for the past seven years, Ferguson, now 66, has had a place to call her own. She lives in an apartment in southeast Atlanta, thanks to a supported housing voucher for homeless people with mental illness.

“I love the bus line,’’ she says. “The neighbors are great.’’

The program helping Ferguson is part of Georgia’s effort to comply with an agreement it made with the U.S. Justice Department to overhaul state public services for people with behavioral health problems and those with developmental disabilities.

The landmark pact is 10 years old this month. GHN spoke to about 20 patient advocates and experts on the successes and failures related to the agreement, which was renewed in 2016.

The consensus is that Georgia has made major advances in the care of these individuals.

Atlanta street scene

But there are still significant gaps — categories in which the state has failed to meet the terms of the DOJ pact. One of these shortcomings is that too few Georgians with serious mental illness are getting supported housing vouchers like Ferguson. That’s the repeated assessment of the independent reviewer assigned to monitor the settlement agreement, Elizabeth Jones, in court filings.

“We’ve come a long way from where we were in 2010,’’ says Susan Goico, director of the Disability Integration Project at Atlanta Legal Aid. “The state should be applauded for that. But the work is not done. In supported housing, we have a lot of work to do.’’

People are still getting discharged from state-run mental hospitals and sent to homeless shelters, reviewer Jones said in her recent report.

The supported housing provides not only a place to live, but also connections to crisis teams, management of medications, and help in getting to medical appointments or a grocery store.

The DOJ agreement requires the state to have the capacity to provide housing aid to any of an estimated 9,000 people with serious mental illness. Jones’ report said the number of Georgians with authorized vouchers in August, the latest month with available data, was just 1,672, down from a peak of 2,628 in January 2018.

The state has lived up to its pledge not to admit people with developmental disabilities into the state-run hospitals. And scores of people with developmental disabilities have been moved from hospitals into community residences. Still, major service problems led to adverse medical events, including deaths, for many of these former hospital patients.

Exposé led to action

The Justice Department lawsuit against the state came after a 2007 series of articles in the Atlanta Journal-Constitution revealed a myriad of problems in the state’s mental health system.

State-run hospitals for people with mental illness and developmental disabilities were overcrowded and understaffed, and dozens of patients died under suspicious circumstances, the newspaper reported. Meanwhile, community services for people in need were scarce and underfunded. The result was a shockingly flawed system in which few people got the help they needed.

A closed Northwest Georgia Regional Hospital in Rome

And Georgia’s publicly funded services already were the focus of a groundbreaking 1999 U.S. Supreme Court decision – known as Olmstead. The justices had ruled that unjustified use of institutions to segregate people with disabilities from society constituted discrimination and violated the Americans with Disabilities Act.

Two years after the AJC articles, in 2009, Georgia created a new state agency to address the problems in its public mental health system. It’s known as the Department of Behavioral Health and Development Disabilities (DBHDD).

Since October 2010, when the DOJ pact was signed, the state has spent more than $290 million on meeting the agreement’s terms.

The current DBHDD commissioner, Judy Fitzgerald, said in a statement to GHN that “our state hospitals, team members, and community providers have embraced this charge for change and [served] Georgia’s most vulnerable citizens with a new level of care, dignity and respect. The transformation is measurable and remarkable, and coupled with our sustained commitment to improvement, we expect continued progress.’’

Fitzgerald

The pact has caused Georgia to spend much more money on services for vulnerable people than would have been politically possible without it, says Stan Jones, an Atlanta attorney and longtime advocate for people with mental illness.

Still, Georgia’s mental health spending has lagged behind the national average. The state spent $60.25 per capita (based on 2015 figures), ranking 44th among states, and spending far lower than the national mark of $109 per capita, according to Ted Lutterman, with the National Association of State Mental Health Program Directors Research Institute.

In 2018, he says, Georgia served 13 people in its public mental health system per 1,000 state residents, versus a national rate of 23.

Fewer people in mental hospitals

The shift to community services and away from care in institutions has been dramatic. Two state hospitals – in Rome and Thomasville – have closed, while another, in Milledgeville, has been downsized.

In October 2010, these hospitals combined had a total capacity of 2,436 inpatient beds. Now it’s 1,075 beds.

And the patient care in the remaining hospitals has improved, says Devon Orland, litigation director of the Georgia Advocacy Office.

Community services for people with mental illness have been created and beefed up, including treatment teams, crisis stabilization units, supported employment and housing. “People are getting more of what they want to recover and maintain their wellness,’’ says Sherry Jenkins Tucker of the Georgia Mental Health Consumer Network.

Wendy Lang

Far fewer people with developmental disabilities reside in state hospitals after many have moved into community living situations. In 2010, there were 726 such individuals in state institutions; now the number is down to about 100.

Included in the success stories is Wendy Lang, who moved from Gracewood, an Augusta hospital serving people with developmental disabilities, into a group home.

At the home, a nurse helps her with her medical needs, and support staff can take her to a doctor’s appointment or to a grocery store. “She’s made such great improvement’’ since that move, said Shonta Hazel, a support coordinator, in a video produced by the Department of Behavioral Health and Developmental Disabilities.

The early years of such transitions, though, produced many poor outcomes, leading the state to order a moratorium on the moves. Media outlets reported that almost 10 percent of the 480 Georgians with developmental disabilities who moved out of state hospitals from 2010 to mid-2014 died after being placed in community situations.

The transfers eventually resumed, with medical providers more attuned to the needs of the developmentally disabled.

But the recent Jones report noted that neglect has been substantiated in the deaths of some developmentally disabled Georgians in fiscal year 2020. Such cases included “staff not responding in a timely manner to a change in the condition of the person, thus resulting in a delay in obtaining needed care.’’ One person did not receive her seizure medications as ordered and died while having a seizure, the report said.

The transition process has improved after a wave of problems, says Eric Jacobson, executive director of the Georgia Council on Developmental Disabilities. He adds the state is still lacking enough service providers, and notes that there continue to be people in institutions who could live in community settings.

This year, meanwhile, COVID-19 has halted those transfers from hospitals.

Harmless, but in jail

The troubling gaps in mental health services continue to draw much criticism.

The Georgia Sheriffs’ Association told GHN that the settlement agreement hasn’t prevented many people with mental illness from being locked up in jails even though they have not committed violent offenses.

“They don’t need to be in jail, but there’s no place to take them. It’s very frustrating,’’ says Bill Hallsworth, jail and court services coordinator for the Sheriffs’ Association. “A lot of them are good folks but they have a hard time getting along in the community.’’

“The jails have become the de facto biggest mental health facility’’ in the state, Hallsworth adds.

Lei Ellingson, senior associate director of the Mental Health Program at the Carter Center in Atlanta, adds that the state “has never found out how to get people out of jails and connect them to community services.’’

The state’s Crisis and Access Line, meanwhile, is often inundated with callers seeking mental health help, some patient advocates say.

Homeless camp under Atlanta interstate

“There are no long-term services’’ for people with mental illness, adds Bonnie Moore, a leader of the National Alliance on Mental Illness in Rome. She says the homeless in Rome and elsewhere in northwest Georgia “have nowhere to go or to live.’’ Moore adds that there has recently been a rise in attempted suicides.

And a familiar problem has continued to haunt the system: hospital readmissions of people with mental health problems.

The Jones report in September noted that several people had multiple hospital admissions without a link to supported housing before their discharge. Instead, they were referred to rooming or boarding houses or homeless shelters. One with 65 episodes of hospitalizations was discharged to a shelter instead of supported housing, the reviewer’s report says.

An Atlanta woman who has been homeless for more than two years, who asked not to be identified, told GHN that “a lot of things happen to people on the street.’’

Anyone homeless for a significant time “has PTSD, depression and anxiety,’’ says the woman, who just got connected to housing through a City of Atlanta program.

Helping her is the Intown Collaborative Ministries, a homeless outreach organization that says Atlanta shelters are not accepting new people because of the risk of COVID-19.

Brad Schweers, the nonprofit’s executive director, said barriers to more housing include a limited supply of suitable places. The state’s voucher program, he adds, “is very difficult to navigate.”

Tucker

Tucker, the consumer advocate, said she herself used to be homeless, living in a car in a rural area. “It’s no way to live,’’ she says.

She and other consumer advocates say Georgia’s services for vulnerable low-income people have been hindered by the state’s decision not to expand Medicaid under the Affordable Care Act. That way, more Georgians who have little income could regularly seek medical and psychiatric care through Medicaid coverage.

“That the state would walk away from virtually free health care is unconscionable,’’ Tucker says.

Georgia’s Republican-led political leadership has consistently opposed Medicaid expansion, saying it would be too expensive for the state.

Instead, Gov. Brian Kemp has pushed a waiver to add low-income adults to the Medicaid program. Because of the requirements for that coverage, the state expects 50,000 new enrollees at any one time through the change. But that’s far lower than the projected 500,000 low-income adults who would qualify for Medicaid under expansion. 

Patients with a double problem

Despite repeated shortcomings detailed in Jones’ reports, the state in early 2019, in a letter from outgoing Gov. Nathan Deal, asked for an end to federal oversight of the state’s mental health and developmental disabilities system.

The Justice Department did not approve the request, and even if it had done so, a final OK from a federal judge would still have been required.

“I think the state is fatigued,’’ says Orland of the Georgia Advocacy Office. “You’re running a marathon, and haven’t gotten to Mile 3. There are good people trying really hard, but the job isn’t getting done.’’

Other states have done better in implementing settlement agreements to expand services for people with mental health or developmental disabilities, such as Delaware, Virginia and North Carolina, says Alison Barkoff,  director of advocacy for the Center for Public Representation, which advocates on behalf of people with disabilities.

This year, the DBHDD has endured millions of dollars in state budget cuts amid the pandemic. These reductions have pared funding for peer specialists, regional office staff, and for individual and family supports.

State Capitol

“Since the budget cuts, I don’t know if the oversight is going to continue,” says Orland, who notes that children’s services are not covered under the DOJ agreement.

A new pilot program, though, is a promising model to help the housing situation, Jones said in her report.

Housing First provides housing and community support and treatment that’s consumer-oriented and recovery-based, says founder Sam Tsemberis, with no requirements for sobriety upon entry. He says the state’s voucher program has recently been made easier to work with, and adds that inspections are done faster so that access to apartments is more efficient.

“We anticipate measurable success in improved access and positive individual outcomes,’’ a DBHDD spokesman says.

A lingering challenge, meanwhile, is in serving the patients with the most complex problems – those who have both a mental illness and a developmental disability.

Vaughn Calvert says his son was housed at the Milledgeville hospital in his 20s. “He thrived there. He needs structure,’’ says Calvert, who requested anonymity for his son.

But Calvert said his son had to move from the facility in 2011, going first to a group home, then to an apartment in Athens. The son, who has bipolar disorder, cycled in and out of the emergency room of an Athens hospital. He’s now in Moultrie, almost 200 miles from the Calverts’ home in Putnam County. “We want to bring him back home, but there are no providers here.’’

When his son spirals into crisis, Calvert says, he needs another level of care than what’s available — a treatment facility that can handle people with both mental health problems and developmental disabilities.

“I appreciate what the state has done for him,’’ says Calvert. “We need this last piece of the puzzle.’’