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���������� Note: The article below indicates the fears that many of us have in NY about systems change turning into budget and funding cuts from payers that behavioral health community providers have relied on for decades. It is important to remember—particularly as we face a new budget season—that investments in community supports during a time of change are essential to maintaining the recovery for individuals needing services. Some of the comments and questions within the article are ones that recovery-oriented providers have long stopped asking; but they are questions that many people forming public health policy and elected officials are only now exploring.

Mark your calendars for February 24, 2015, to join ���������� in Albany for our annual legislative day, where financing the behavioral health system is surely to be an issue for our mutual advocacy.

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As Public System Changes, Many Mentally Ill Residents Pay the Price

Providence Journal; G. Wayne Miller, 10/25/2014

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Once hailed as a national model of care, Rhode Island’s community mental health system is undergoing tumultuous changes that some advocates say are jeopardizing the well-being of many vulnerable people.

State officials counter that the changes eventually will better serve the mentally ill.

“I understand that we’re in a system transformation,” says Susan C. Jacobsen, executive director of the Mental Health Association of Rhode Island, “but that can be a really fancy way of saying ‘get on the back of the bus.’ It can be a fancy way to spin cuts.”

The latest cut is the loss this year of $9.9 million that provided services to many residents with behavioral-health difficulties.

The loss will affect people such as 63-year-old Ann Brown, a West Warwick resident who relies on public services for help with her mental illness.

“When they cut down on any health care,” Brown says, “it hurts a lot of people — especially ones with low income and maybe no income much at all.”

A client at the Kent Center for Human and Organizational Development in Warwick lost his caseworker because of budget cuts. He wrote to the center’s director: “Now that I lost him, I now have missed my medicine twice which affects me so much … I don’t blame you but I blame the state for not caring about the people they hurt … We are the patients the state doesn’t care about.”

There were 24,000 Rhode Islanders who experienced mental illness with “serious functional impairment” in 2011, the latest year for which full data is available, according to the federal Substance Abuse and Mental Health Administration.

Agency statistics show the state has higher incidences of both overall and severe adult mental illness than the national averages.

Loss of the nearly $10 million comes amid intense discussions about the mission and structure of the community system, which has its roots more than half a century ago in the final days of President John F. Kennedy’s administration.

Underlying the debate is the question of how and at what levels the system should be funded in an era of complex and shifting payment sources. A complicating factor is Rhode Island’s overall budget constraints and struggling economy, which itself can increase the need for services, since joblessness can exact a cruel toll on one’s well-being.

Pressing public issues

The public system that BHDDH oversees was built around eight major nonprofit community mental health centers and what is now known as Eleanor Slater Hospital. It is distinct from the private system of mental health care, which private insurers such as Blue Cross/Blue Shield and individuals underwrite.

Among the pressing public issues:

• Is the current division of care, delivered largely through Rhode Island’s eight geographically scattered major community mental health centers — each with its own client populations and financial and other resources — appropriate for the nation’s smallest state?
• How deeply should centers be integrated into existing networks of overall health care, notably hospital groups?
• Can a newer philosophy of help that focuses on an individual’s potential for recovery, not a protracted course of open-ended “dependence,” work for more of Rhode Island’s mentally ill? If so, how best to achieve that goal?
• What are the best solutions for the intractably mentally ill who are homeless or cycle through acute-care hospitals or the Adult Correctional Institutions, which some say has replaced the old Institute of Mental Health, remembered for its inhumane conditions?
• Can a patchwork of funding from private, local, state, federal and other sources be simplified, thereby freeing more staff resources for hands-on care?
• Where is the leadership on mental health issues at the State House? Unlike in times past, there are no powerful voices today in the General Assembly or governor’s office.

��$10-million loss

In his 2015 budget request, BHDDH chief Stenning included for community mental health nearly $5 million in state money that would have brought almost another $5 million in federal matching funds. To varying degrees, community centers had relied over the years on these CNOM (Costs Not Otherwise Matchable) funds to fill gaps in services for underinsured and uninsured clients.

But the General Assembly did not approve the money for BHDDH in the waning days of the session.

“It was a real shock. There was no sign that the money was going to come out of the system,” says James McNulty, head of the Mental Health Consumer Advocates of Rhode Island and a former staff member of BHDDH’s predecessor agency and ex-president of the National Alliance on Mental Illness’s board of directors. McNulty was diagnosed decades ago with bipolar disorder, and his achievements vividly illustrate the possibilities of recovery.

The immediate effect of the CNOM cut has differed by center.

No clients lost services at The Providence Center, the state’s largest, according to president and chief executive Dale K. Klatzker.

“We’ve done this very aggressively and proactively,” Klatzker said. “Our size helped us,” Klatzker says. “Our strategy helped us.”

But nearly 200 clients served by Warwick’s Kent Center, whose budget is a third of The Providence Center’s, lost some services — including those provided by case managers, who assist the mentally ill in myriad ways, from ensuring they remain on their medications to providing help with employment, education, housing and transportation.

“We’re near a tipping point where we’re going to see essential services totally deteriorate,” says David S. Lauterbach, Kent’s president and chief executive. “We used to have a system, but I’m not sure we have one anymore. I think we have a series of agencies that don’t necessarily cooperate with one another, who do not necessarily share a common vision — who compete for every dollar because they’re so scarce at this point in time.”

The Mental Health Association of Rhode Island’s Jacobsen puts the nearly $10-million loss in CNOM funds in historical perspective.

“It’s a big cut in one year anyway, period,” she says. “But it has to be put into the context of the cuts that have happened over the last decade.”

According to BHDDH, state and federal programs provided $107.80 million for behavioral health care in the 2006 fiscal year and $110.68 million in 2007.

In the fiscal year that ended June 30, the figure was $97.48 million. The nearly $10-million CNOM cut is from the fiscal year 2015.

These reductions, Jacobsen says, “at first required providers to do more with less. Ultimately, you can only ask them to do that so long and then they have to do less with less. What’s offered now is absolutely less with less. I don’t think that there’s any question that has resulted in some individuals not receiving services they need in order to maintain their health.”

“Could we benefit from having more money put back into a budget?” says deputy BHDDH director Rebecca Boss. “Absolutely. Could the system benefit from looking at different models of how we treat the mentally ill in the community? Absolutely. I think we need to look at both.”

��One who’s hurt

West Warwick resident Ann Brown, a mother with two grandchildren, has dealt with schizoaffective disorder for more than three decades. A part-time home aide for elderly people, Brown, 63, delights in her daughter and grandchildren. She gives much credit for her stability to the Kent Center, which provides her with psychiatric and other care.

“My life has changed tremendously,” she says. “They’ve helped me a lot.”

In recent years, as she went through a divorce, Kent’s case managers were there for her. They guided her through the process that led to a General Education Degree, helped her negotiate buying a car and assisted in her job hunt. The loss of CNOM money affects her directly: under the pay-for-service arrangement she will now need, she, like others, may not have case management long-term. Many have already lost it.

She was willing to go public with her story in the hope that people in positions of power will listen.

“When they cut down on any health care,” Brown says, “it hurts a lot of people — especially ones with low income and maybe no income much at all.”

Brown says she spends just $100 a month, plus $12 in benefits from the Supplemental Nutrition Assistance Program, for food.

“I do my own cooking,” she says. “It’s nothing fancy, but I can do it. I don’t go shopping for myself. The only thing I do is once in a while I get coupons for sewing — that’s my hobby that keeps me happy. I sew, I do cooking, I mend for people for nothing. I do embroidery. I love to make things for children.”

When her brother, an Arizona resident, became terminally ill, she could not afford to visit him. “He��died July 2. He knew that I couldn’t get there — it was going to cost me $1,300. I couldn’t go see him, alive or dead.”

Along with others at the Kent Center, Brown’s case manager got her through that, too.

“The case managers give us our strength,” says Brown.

Kent Center

In the lobby of the Kent Center’s administrative offices a few miles away, fliers announcing an online petition to restore the CNOM funds sit on a table. In his office, director Lauterbach reads a letter sent him by a client who lost his case manager.

“He did so much for me and would bring me my medication from the Kent Center and helped me through so many difficult situations,” the client wrote. “Now that I lost him, I now have missed my medicine twice which affects me so much … I have severe nightmares, especially [of] when my father would tie rope around my neck and make me beg for food and then would throw me in the closet, or when he would beat me with an electric cord until I bled.

“Mr. Lauterbach, I don’t blame you but I blame the state for not caring about the people they hurt … We are the patients the state doesn’t care about.”

Lauterbach will offer the man an affordable out-of-pocket payment plan. But that ultimately could prove counterproductive.

“What happens is clients get upset about seeing a balance develop,” Lauterbach says, “even though I say, ‘well, you know, if you can’t pay that, we can talk about it.’ But still a balance is developing and some of them just say, ‘I can’t sleep at night knowing that I owe you $400.’ So some folks don’t do that. Some folks say ‘I’ve been getting services for free forever, I don’t want to pay anything.’ ”

Already, Lauterbach says, clients who have gone without case management have required more costly hospitalization that might have been prevented. He foresees more of those, plus likely increased homelessness, arrests and incarcerations as certain clients, no longer being monitored for their mental illnesses, exhibit socially unacceptable behaviors.

“There are an awful lot of people out there who want us to leave them alone,” he says. Some don’t believe they are mentally ill; others hate the side effects that certain medications can produce.

“Now that we’re not there,” Lauterbach says, “they just go, ‘Cool! I’m just not going to take my meds.’ We’re going to pay a price for that in the community if we haven’t already.”

Lauterbach wishes he had other resources to fill the gap created by Kent’s loss of some $750,000 in CNOM revenue. He doesn’t. He’s down to the bone already.

“The Kent Center used to be a $17-million organization. It’s a little under $15 million now, so I’ve lost $2 million worth of funding over the course of the years. I’ve probably lost 30 staff. I haven’t given a raise in seven years to any of my staff — me, nobody, has gotten a raise.

“A number of mental health centers are teetering. Not so much the ones that have been absorbed by Lifespan and Care New England, but the other ones are teetering on whether they’re going to survive or not. It’s a terrible situation.”

��Affiliations are key

In 2013, The Providence Center allied with Care New England, the health-care system that includes Butler, Kent, Memorial and Women & Infants hospitals, and VNA, the visiting-nurse association.

Gateway Healthcare — the state’s second-largest community mental health center — is allied with Lifespan, which includes Rhode Island and Miriam hospitals.

“Behavioral health affects one’s physical health, and one’s physical health affects one’s behavioral health,” Providence Center head Klatzker says. “While there are areas of specialization, to treat them separately doesn’t work very well. You have to treat people holistically.”

BHDDH’s Stenning agrees. So does Lauterbach, whose Kent Center operates a primary- and ambulatory-care center, and hosts a pharmacy and laboratory on its premises.

Affiliation also gives certain financial advantages and economies of scale, proponents assert. When The Providence Center is fully integrated into Care New England, likely by the end of the year, Klatzker says, “we’ll be able to provide a very clinically effective, cost-effective package of opportunities, at least for adults.”

Lacking partnerships with health-care giants, the six smaller, unaffiliated centers find themselves fighting for their vision — and for the scarce dollars Lauterbach references.

The effort is led by Chris Stephens, former head of the Woonsocket-based center NRI Community Services, who recently formed Horizon Healthcare Partners “in order to link small- and medium-sized behavioral health organizations together for contracting and survival purposes.”

Stephens notes that the smaller centers do address the overall health needs of their clients through collaborations with hospitals and overall health centers. Also, he says, the so-called medical model embraced by Gateway, The Providence Center and BHDDH is being driven, in part, by “the pressure to reduce health-care costs.” Client care, he argues, can take a back seat.

As BHDDH eyes the future of the statewide system, Stephens argues that “the remaining community-governed, community-based” centers must remain.

“Too much progress has been made and there are too many unfinished tasks to abandon community mental health organizations and their unique approaches to giving our most disabled neighbors some hope for a more normal life in the community,” Stephens says.

Meanwhile, says Mental Health Consumer Advocates head McNulty, people such as Ann Brown and other Kent Center clients who are caught in the crossfire suffer.

“I’m concerned about the people who need the most care because they often are the ones who are left out,” McNulty says. “The cuts have taken the inevitable toll.”

Says state Mental Health Advocate Megan N. Clingham: “The system of delivering mental health care to the people of Rhode Island is definitely broken.”

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