Last night I attended the one-year anniversary celebration of Fountain House Bronx, and it was a lovely affair. The atmosphere was celebratory, the speeches were inspiring, and the food was wonderful, but my favorite moment came after most of the activity was over.
I stepped out into the backyard where the club had created an amazing garden with donated compost and soil from the city. Standing near the garden was a member of the club, and he began telling me how hard they had worked to create the garden. He was clearly very proud of it. He said to me, “I feel a part of this place and this garden. I’ve never had this before.” By “this,” he meant a community of people where he belonged.
Today more and more mental health funding relies upon Medicaid, a program that aggressively focuses on a checklist of short-term outcomes. But it’s important to remember that, sometimes, people just need a place where they are wanted and needed. This man had a purpose and a place; he made his garden grow. I’m clear that is a huge step toward his recovery.
Panel discussions were organized to address both local and national issues. The first panel presented the development of our integrated care model as initially conceptualized in cooperation with Dr. Ralph Aquila and St. Lukes’s/Roosevelt Hospital. A second panel included members and staff from Fountain House and the Sidney Baer Center, who described the everyday working out of the network of relationships between all the people who might be involved in each individual member’s wellness program. The third panel of the day was a presentation by Magnolia Clubhouse of their successful effort to duplicate our integrated healthcare model by providing a small psychiatric and medical clinic located close to their clubhouse in Cleveland.
On the second day of the symposium, we heard from outside experts on changes in the insurance industry and on state and federal initiatives to redesign health delivery and Medicaid systems. A final panel addressed the need for well-designed research studies that would evaluate the efficacy of our model of care for the enhancement of our members’ wellness.
The fundamental issue posed for all of us was whether it is feasible to replicate this model at other clubhouses across the country; for the participants in this symposium, the answer was clearly in the affirmative. The open discussion between participants also dealt directly with some difficult issues, e.g. conflicts that can arise for clubhouse staff in working in collaboration with members and their doctors; and the long-term worries that we all share about public funding for healthcare in the immediate future. On the whole, however, participants were optimistic about the opportunities we see for enhancing our partnerships for wellness.
In planning for the future, we have agreed to maintain regular contacts with the groups participating in this Symposium to keep each other updated on the progress of our programs. We will also pursue discussions of possible joint research projects involving more than one clubhouse, and consider the possibility of presentations of these ideas at upcoming regional or international conferences.
Howard Owens, MD Chair of the Council for Training, Education, and Advocacy Fountain House
Alan Miller and Maria Bronkema Advocacy Committee, Fountain House
On August 31st, State Senator Thomas K. Duane visited Fountain House to address recent budget cuts and answer questions from our community. He represents our 29th State District that includes the Upper Westside, Chelsea, Hell’s Kitchen, Greenwich Village, and parts of the East Side. Elected in 1998; Senator Duane was the first openly gay and first HIV positive member of the New York State Senate. His initial political experience comes from his seven year stint on the New York City Council, when he first became aware of Fountain House and its mission.
Senator Duane champions many causes: tenants’ rights, a woman’s right to choose, LGBT rights, and environmental conservation, just to name a few. He’s concerned about the influence of stigma on the delivery of public health services to those living with mental illness and/or with HIV/AIDS. He presently serves on the Medicaid Redesign Team (MRT), a body that Governor Cuomo convened to examine the Medicaid system and develop solutions that will lower its cost without compromising care.
A Fountain House supporter and a recovering mental health consumer, the Senator declared that our voices must be heard and our agenda put on the table. While answering our questions, he was adamant that we become more active in the legislative process. There’s more hope than ever, insofar as we can now participate in MRT decision making. In contrast, last year, on Governor Patterson’s watch, 5 percent was cut from services across the board without any input from consumers.
Following are some quotes excerpted from the Senator’s answers during the questioning period of the event: “There is a paradigm between physical and mental health…integrated medicine”; “the Redesign Team looks for a solution that encompasses this integration”; “go to all the meetings, hearings, including Behavioral ones”; “write to the different health agencies”; and “use personal, powerful stories of recovery from consumers.” Senator Duane emphasized that we not only continue making calls to all the agencies and politicians involved with our issues, but that we also rent a bus and “Get up to Albany to lobby!” The icing on the cake was Senator Duane’s statement that, as a society, we’ve had the lowest taxes since 1940; we must implement fair taxation and tax people who happen to be wealthy!
The meeting was well attended by members and staff, and many pertinent questions were asked. Thanks to everyone who helped organize the event!
All over the country, programs like Fountain House face a serious funding crisis, as state governments dramatically slash these organizations’ budget lines. Medicaid dollars are being reduced nationally, and many community mental health programs are finding the current Medicaid funding mechanisms extremely cumbersome and, ultimately, unworkable.
New York State developed a new funding stream called Personal Recovery Oriented Services (PROS) in an attempt to create a more recovery-oriented Medicaid program. This mean that, in contrast to the traditional medical model of treating sickness that Medicaid was designed to pay for, the state is encouraging recovery programs – programs that integrate treatment, support, and rehabilitation at the level of the individual – to qualify for Medicaid funding.
The state promoted this approach, but the majority of early adopters are really struggling to make their programs financially viable. Funding is now creating the programming, and that’s always detrimental.
The disconnect between the rhetoric of recovery and the current nature of Medicaid funding demands new thinking about the issue. Most disturbing to me is the fact that the advocacy groups who should be crying the loudest, can’t, because they receive too much funding from the state. Rather than make believe that PROS is working, we should admit the obvious and search for a better way.
Overlooked within Wisconsin’s controversial “Budget Repair Bill” is a disturbing provision that would silence the voices of 90,000 adults with Serious Mental Illness from providing any input on severe cuts to, or even the elimination of, Medicaid and community mental health services. If passed, Wisconsin would be the first state to do away with public debate and legislative oversight on changes in Medicaid – a benefit that so many people living with mental illness depend on.
The Budget Repair Bill gives the Wisconsin Department of Health Services (DHS) broad power to create "emergency rules" on Medicaid. Normally emergency administrative rules must be voted on by the Joint Finance Committee, after public hearings. A second vote, also with public hearings, is then necessary to make the emergency rules final.
However, this bill maintains that Wisconsin's budget emergency is so dire that DHS must be given the power to create emergency rules without legislative vote or public input - despite the fact that over a dozen governmental and advocacy groups have shown that, even if Medicaid were completely eliminated, there would be no reduction in the State’s deficit.
Regardless of the budgetary impact or the service implications Medicaid cuts, there is no reason to make changes in secret.
This lack of transparency would be troubling in of itself, but even more distressing to mental health groups, including NAMI Wisconsin, is that the recently appointed Secretary of Wisconsin’s DHS, Dennis Smith, is a former Heritage Foundation fellow. During his multiple-year tenure there, he penned a number of policy position papers about Medicaid. In one such paper, written in 2009, he argues that states like Wisconsin should do away with Medicaid entirely.
The Heritage Foundation has been a strong proponent of privatizing mental health services in states. This has been called re-institutionalization by some disability advocacy groups. One group called ADAPT staged a sit-in at the GOP headquarters in Madison, Wisconsin last week. Advocates feared cuts in Medicaid would severely curtail community services (as in Milwaukee County, where Governor Walker served on the County Board) forcing many disabled individuals into adult homes. One of the protestors, Barbara Vedder summed it up this way to the press, "We are able to be in our home with jobs and be productive members of society because of Medicaid. We don't want to be put into nursing homes. This budget bill is not repairing us. It is destroying us!"
New York State is completely revamping its Medicaid system, especially for people with serious mental illness. Data provided by the State Office of Mental Health demonstrates that people with serious mental illness incur a large proportion of Medicaid hospital costs for psychiatric reasons, but an even larger proportion of hospital costs for reasons of physical health. More shocking than that, despite this heavy use of hospitals and costly medical services, people with serious mental illness die twenty-five years earlier than the average person.
A new solution to this tragedy is on the horizon under the name “health homes.” In a health home, people would have one doctor or group of doctors overseeing their complete care – both mental and physical health – and a professional coordinator who would follow patients, no matter where they go for help.
To my mind, the crucial question is this: will these health homes be abstract concepts in a computer system, or will they be real places where patients go to for this coordinated care?
Health and mental health planners often design systems at a very high level, on a very large scale, usually quite removed from the day-to-day lives of the people who need help. Frequently, they devise systems that include many different services, all in separate locations; they implement a computer system to track it all and then call it comprehensive. However, to the customers or patients who must go from place to place to get what they need, the experience is fragmented, difficult to navigate, and alienating.
The best way to reach this group effectively is to develop one-stop locations with very good teams who reach out and bring people in for help. We have been designing such a place for the last twenty years. At our Sidney R. Baer Center, psychiatrists and general practitioners are attuned to the special health needs of people with serious mental illness. Combined with the community support of Fountain House, a few blocks away, we offer a truly comprehensive health home. Real health homes must be real places.
Recently, the Green Door Clubhouse, a Fountain House model program in Washington, D.C., announced its closing. Named for the distinctive front doors of our building, the Green Door helped people living with mental illness find their place in the community for 35 years. Until, like so many other programs, it fell victim to short-sighted funding approaches.
Medicaid has become the biggest source of funds for services for people with major mental illness. It is administered to provide short-term support for recovery-oriented services, but it is extremely limited when compared to the ongoing support necessary for the majority of this group to live productively in the community. Those who favor this approach are out of touch with the bulk of people living with these conditions. Recovery is rarely a linear process, and integration in the community is often challenging.
Social isolation is the biggest problem for those living with major mental illness today. Among our membership, we’ve found that even after people have a job and their own place to live, they don’t necessarily connect into the larger world. Of course, some do, but there is a very large group who don’t. Likewise, I used to think that when people left Fountain House, they became involved in other employment or education programs, but we found that most end up doing nothing.
Shame on the state governments and the commissioners of mental health who have supported these trends which abandon large swaths of people! State governments used to provide both the direction for these services and the greater part of funding. Now they simply match Medicaid, watch their deficits increase, surrender their leadership role, and continually reduce crucial services.
Today, more than ever, there is a need for working communities like Fountain House to break the social isolation and help people connect in multiple ways – through education and jobs, through supported housing and wellness services – and most importantly, through a supportive community where people truly feel like they belong and can return to when they need a little extra help.