Feel Hopeless About Reforming a Broken System? Incremental Change Is Still Change

Recently I went to a bowling alley—not my usual place to hang out.  But the reason I found myself there was that I had been invited to a “Bowling Bonanza.”  There were about 100 people who all had been diagnosed one way or the other with both mental health and alcohol problems.  Many had done time in state prisons and local jails.  Most of them had been in psychiatric hospitals.

The bowling event was organized by a totally peer-run organization called Dual Diagnosis Anonymous.  It had been funded 15 years ago during my tenure as a state mental health and addictions commissioner. The founder was a grizzled Vietnam veteran, Corbett Monica.  He told me it was for people seeking acceptance and mutual support to recover from their problems with both mental health challenges and addictions and who didn’t fit in the system—or anywhere else, for that matter.

We provided Corbett with $50,000 with virtually no conditions other than to get meetings going across the state.  He drove close to 100,000 miles in the first two years, and 100 meetings were started—at least one in virtually all of the Oregon counties.  By now there are over 1,200 members, 300,000 “hits” on the website, and a budget of around $600,000.  Members can participate—voluntarily—in state hospitals, state prisons, and community settings.  While meetings use the 12 steps, the main benefit is to finally have acceptance for who they are, not their diagnoses or their pasts.  They also have access to social activities like the Bowling Bonanza.

A strong case has been made at Mad in America for the harm caused by psychiatry and its paradigm of a medical/biological model.  Because of that, some days it is easy to feel like giving up.  Despite all our efforts, it seems that a radical transformation of the system has not yet occurred.  However, I’d like to make the case that more incremental changes can directly improve the lives of thousands.  Moreover, these changes may have a ripple effect, ushering in that big change “one of these days.”

As Rebecca Solnit writes, “That nearly all change is incremental and even a comprehensive victory usually has intermediary steps preceding it is one of the things that disappears in the short view.  Imperfect and frustrating though those steps may be, they can still lead us to our destination.  We can’t reach the summit without climbing the mountain.”

Over 30 years ago, I was introduced to the world of peer supports by Mind Empowered, Inc. (MEI).  It was organized and directed solely by two persons with lived experience, Jerry Wang and Garrett Smith. I believe they should be far more recognized for their pioneering work.  MEI began with a day program offering mutual support.  They soon came up with the idea that peers who had themselves been state hospital patients could do a better job getting people out of a dysfunctional state hospital than the medically oriented staff.  They connected with people who had been in this hospital for a long time and were considered the most “difficult.”  It worked.

A critical element was hope that they could be people other than state hospital “patients.”  This project came about with partnership from state office visionaries who took a chance funding a program that no one really knew at the time would work.  Because of its success, it received national attention in a 1994 article in Hospital and Community Psychiatry (now Psychiatric Services) with Garrett Smith as lead author, and another co-author one of the staff.  It was noted in the 1996 US Surgeon General’s Report on Mental Health as an early peer-delivered project.

So there are two questions that we must ask about these two programs and those that follow:  Did they transform the system, and did we do the right thing to support and fund them?  I think that the answer is no to the first question and yes to the second.

Here are some more of these kinds of system changes:

Increased community supports and housing

With more community services, housing, and supports, the time people spent in the state hospital was reduced by 30% on average.  Community mental health programs increased their involvement by creating new housing and other community supports.  With these new resources, the local mental health authorities agreed to be increasingly responsible for the costs of state hospital care for people who were not discharged promptly.  The number of persons involuntarily admitted to state and local hospital was also reduced.

Improved psychiatric inpatient services

The use of seclusion and restraint was reduced in both state hospitals and local acute care units.

The nation’s first Supported Education project was initiated in the state hospital.  The service was implemented with leadership from Dr. Karen Unger, the key developer of it, based on the principles of Supported Housing and Employment created at Boston University.  People could then continue their education while still in their hospitalization rather than wait. Over 100 people were enrolled by 2007.

Respect for peer advocacy and funding for peer-delivered supports

A consumer/survivor council was created so that peer advocates had direct access to the mental health commissioner.  There were open and sometimes heated discussions in some meetings because advocates like David Oaks were members.  Uncomfortable as it was at times, this kind of direct feedback was a key reason for creating it.  The Council was made a requirement to continue to this day by the Legislature in 2008.

A “Peer Bridges” program was established in the state hospital.  This project was based on the same principles of the MEI discharge program already described.  Staff members show the kind of support that only peers who “have been there and done that” can do.  They accept those who are patients as people.  They advocate for respect and hope for people, most of who were admitted by court orders.  The project is still in operation in the state hospital.  It operates a drop-in center on the hospital grounds as well as providing support in the state hospital itself.  It is now known as the Peer Recovery Services Department.  The seven-person team works in a very challenging environment.

One state hospital was renamed “Blue Mountain Recovery Center” because of a petition initiated and signed by an overwhelming number of patients.  The Legislature formalized the new name in 2006.  This was a clear directive for staff to rethink the purpose of the hospital and to challenge them to make it real.  One can reasonably ask, “What’s in a name?”  But words begin to define the purpose of a program and can be used to hold programs accountable with additional advocacy.

Peer-delivered services were established in the community based on the recovery model.  Work is ongoing to adapt Medicaid funds using the “social determinant of health” category that managed care organizations should be using for peer supports.

Support for people who are in the criminal justice system and who are homeless

$4 million was approved by the Oregon Legislature to fund jail diversion programs in all 36 counties. These programs were for people charged with low-level crimes who should be in the community rather than a county jail. The resources included intensive supports, coordinating with courts, parole, and probation officials to ensure that treatment, housing, and other needs are being met in the community.

$6.15 million was secured for housing to transition people from institutional settings and homelessness. The funds were matched with other resources and expanded to reach housing that was valued at $55 million.  The investments led to 29 projects in nearly half of Oregon’s counties.  These projects included 14 supportive apartments, four transitional housing programs, and other residential community programs.  This resulted to housing for 287 people, 128 of whom were leaving psychiatric hospital facilities. There were also seven projects to house 54 residents in recovery from alcoholism and drug addiction, many of whom were struggling with mental health challenges too.

Attention to health problems and access to health care

Work began to assess and improve the health of persons with mental health challenges.  The urgency of this process was based on two studies.  The first was conducted by Dr. Joe Parks with the National Association of State Program Directors (NASHPD), which showed that people in the United States with major mental health challenges had a life expectancy 15 years lower than the national average.  The second was a study conducted in Oregon using public health mortality data, which showed that people with both mental health and addictions enrollments died at the average age of 44 years.  It was recognized that a joint effort was required which included people with mental health problems, physicians, state staff, and wellness professionals.  The initial goal was to share information on scientific research, literature, peer guidance, and successful practices among user groups.

Improving care for children and adolescents

The state hospital wards for children and adolescents were closed.  Several successful community residential programs were selected to serve these same children and adolescents.  The change was based on the idea that no kid in Oregon should ever have to say, “I was a patient in the state hospital.”  We believed better services could be provided in community settings.  The facilities have now operated for 15 years with the goal of returning children and adolescents to healthy environments back home whenever possible.  Just one example of the kind of services now provided is an art program so that children can work on their own projects as part of their therapy.

Increased supportive and wraparound services were established to reduce lengths of stay in juvenile corrections and other out-of-home placements.  The goals were to increase school attendance, reduce in-school suspensions and expulsions, and decrease arrests. Families reported that they were more satisfied with coordination, participation, treatment, and outcomes.  These efforts were especially important for the most challenged children and adolescents.

The state and community mental health programs collaborated with the state’s child abuse protective services to improve mental health care.  They also sought to increase the percentage of mental health assessments to identify trauma for children placed in out-of-home care.  $16 million in new funding was targeted for more services for families.  $10 million was directed at families whose children were either in or at risk of being in the child welfare system due to their parents’ substance abuse.  About two thirds of the counties participated in the evidence-based Strengthening Families Program to decrease adolescent substance abuse and aggression through the promotion of better parenting and child-parent relationships.

Other initiatives

Early psychosis programs that had been located in the mid-Willamette Valley were expanded with legislative approval of $3.02 million to make them statewide resources, making Oregon the first state in the nation to significantly expand these life-saving early intervention programs beyond limited pilot projects.  Early psychosis services and supports were accessed for about half of the young people in their first major mental health challenge.  It was not long before programs served 200 young people and their families.

A Cultural Competency Project was established to create standards, values, and policy requirements for all organizations and agencies that received grant funds from the state.  These included county social services organizations, contractors, managed care organizations, their provider networks, and all the other agencies in their counties.  The goal was to serve as a planning document for state and county governments and provider networks to address these issues in each county’s implementation plan.

Observations and questions to consider

As I noted, these changes did not achieve a system-wide reform.  In these projects, the profession of psychiatry changed the least, The medical model still predominates everywhere and it is especially difficult to reform in state hospitals.  Another major obstacle is that community programs are largely funded by Medicaid—by definition, largely based on the medical paradigm.  Without a major overhaul of finances and organization, every public mental health service caters to doctors being in charge and signing off on the treatment plans for every “patient.”

However, virtually all of the initiatives in this list were funded outside the medical model.  Creative initiatives have relied on state and local funds, with relatively minor amounts of federal funds.  This took leadership, advocacy, and partnership at every level.  Most of these changes, though not all, have continued and some have expanded.  As a side note, in Oregon they were all achieved in an environment of major state budget deficits that preceded these achievements.

Now these questions remain:  Should we have made these changes?  Did they just serve to prop up a hopeless state hospital and community mental health system?  Some might argue that we should not have made these things happen—that they were just window dressing on a broken system.

On the other hand, how would the thousands of people who benefited from one or more of the changes respond?

If such a survey could be done, how would the people respond whose stays were reduced by 30% at the state hospital?  Would they say that would have preferred to have been secluded and restrained more and to stay extra days without access to better housing and community services or things like improving their education or the peer recovery team or support groups like DDA?

How would the kids respond to the closing of the state hospital? Would they say they wished they could return to their old wards?

How would families respond whose young adults were served in the early intervention program?  Would they say things would have been better if they’d joined the system that called them “chronically mentally ill?

Do the patients at the state hospital wish they had never had the understanding and support of the peer recovery team?

As a hopeless reformer, I’m pretty sure how these questions would be answered.  I hope my thoughts here will hearten those who work daily, against the often prevailing winds, to keep going.