Understanding and accessing the continuum of mental health care
In the summer of 2017, I completed a chapter as the founding Executive Director of CooperRiis Healing Community in Asheville, North Carolina. I have had similar chapters in the healing communities of Gould Farm in Monterey, Massachusetts, Gateway Homes in Richmond, Virginia and Rose Hill Center near Detroit, Michigan. My next chapter is as founder of Virgil Stucker and Associates LLC, where I serve as advisor to families in crisis because of the mental illness of a young adult child and as advisor to families who are seeking long term care options for a child who may now be in their 40’s or 50’s and who has struggled with mental illness for years.
It has been my honor to be called by hundreds of families over the decades, asking me to help them develop solutions. Each situation is unique, yet over the decades patterns have emerged. It is the patterns of care and the recovery journey that I outline in this document – the continuum of mental health care as I see it.
In my decades of experience I have come to know programs across the country; some are very good, some are not. I have been responsible for the hiring and development of several hundred mental health professionals and have come to cherish those wise professionals who have retained their optimism. In writing this document, I have collected ideas about what I believe to be true about mental health care and the human experience of ‘mental illness’ – a term I put in quotation marks because mental illness, while often presenting negative or challenging circumstances for families and individuals, can also contain many gifts.
My hope is that my words will help you discover a more hopeful and broader understanding of mental illness and of mental health care than is generally offered. I make an effort to unify the options for mental health care into a ‘continuum of care’. My hope is that this continuum, a sort of road map, will help families, philanthropists and mental health program leaders make more effective choices and be better able find their place(s) on their respective recovery journeys – because at one time or another, we are all on the journey of recovery ourselves.
The Beginning Of The Journey For Families
Families who face the challenges of mental illness are living in confusing times. The chaos they experience is overwhelming and a sense of harmony is elusive. Our public mental health systems are burdened by lack of funding. Medical insurance reimbursements for care and treatment are unpredictable; parity is piecemeal. The public dialogue is more about fear than compassion. Stigma spawns silence. The ‘safety net’ for vulnerable individuals in our society is torn; even the best of families may not prevent their loved one’s fall into prison or homelessness. Efforts to provide care at home is exhausting for parents and siblings. The challenges of mental illness are great; the challenge of finding adequate care can be just as great.
Mental illness may have appeared suddenly in a family member. The illness may be accompanied by abuse of legal or illegal substances. Questions swirl for the family: is substance abuse a form of self-medicating the symptoms? Did substance abuse cause the symptoms of mental illness in the first place? What is mental illness? Is there a cure? What does recovery mean?
The sense of a sudden onset of symptoms makes a family think that a quick fix is also possible. Myriad quick-fix options (many commercially driven) are available on the marketplace. Although touted as ‘evidence-based’, the scientific evidence backing their effectiveness is often weak. Still, it is understandable that a family may want to try one or more of these options.
In this age of acceleration, we search on our laptops or our smartphones, hoping that a solution will quickly materialize. Confusion increases for families in this process. Although we hope that scientific research will eventually help to create clearer options for care, there are unfortunately no perfect solutions for ‘mental illness’ at this point. However, there are multiple effective paths towards rebuilding a sense of wholeness.
A teamwork approach – including the individual, the family members, and the consultant - helps to clarify which paths are the best. Most are not quick and one-size-fits-all. The healing process takes time. A ‘cure’ may not be the answer, but recovery is; in fact, recovery should always be the goal.
For some, the moment that mental illness emerges is less often a surprise occurrence and more a personal and family crisis that is preceded by increasingly distressed emotions and deteriorating behaviors over time. It takes time to resolve these complex issues. The sense of crisis may emerge in the early college years and may recur. Without effective care, chronic crises threaten to become the norm.
For some aging parents a new sense of uncertainty may emerge as they ponder what will happen to their loved one after they are no longer able to care for him or her. The chronic nature of serious mental illnesses, such as bipolar disorder, depression, schizophrenia, and major anxiety, are draining, both financially and emotionally. I often meet families after they have experienced multiple hospitalizations, medication cocktails, experimental treatments, and isolation from work and friends. I encourage families to seek help sooner and consider a longer-term approach to care.
“RECOVERY AS A DEEPLY PERSONAL, UNIQUE PROCESS OF CHANGING ONE’S ATTITUDES, VALUES, FEELINGS, AND GOALS, SKILLS, OR ROLES. IT IS A WAY OF LIVING A SATISFYING, HOPEFUL, AND CONTRIBUTING LIFE EVEN WITH THE LIMITATIONS CAUSED BY MENTAL ILLNESS. RECOVERY INVOLVES THE DEVELOPMENT OF NEW MEANING AND PURPOSE IN ONE’S LIFE AS ONE GROWS BEYOND THE CATASTROPHIC EFFECTS OF MENTAL ILLNESS.” - WILLIAM ANTHONY, BOSTON UNIVERSITY
Envision a continuum of care, with an individualized approach and logically staged array of care options. Multiple points of access exist on the continuum; they are matched to the family member’s level of need. Rather than focusing only on resolving symptoms and addressing diagnostic issues, the continuum helps to keep the dream of recovery and a purposeful life alive. Successful use of appropriate programming fosters realistic hope for the family that their loved one can achieve and sustain high levels of fulfillment and functioning, despite having a mental illness. This achievement takes time, requires hard work by all, and the journey is worthwhile.
Finding Your Place On The Continuum
The journey begins between Virgil Stucker and Associates and the client with an open dialogue and an assessment of needs sufficient enough to help understand where best to access the continuum of care. This is a storytelling process where each family takes the time to share their experiences to create a picture of where they have come from and where the loved one wants to go. This story, combined with future goals and as assessment of readiness for change and growth, help us figure out where on the continuum to begin.
The recovery process does not necessarily begin at point A; it may even begin at point F or G and other levels of care or intervention may not be needed. Below is a breakdown of the many phases of the continuum, through which a person might move fluidly – backwards and forwards - over time. Recovery is not linear.
Points On The Continuum
A. Highly acute and not willing to accept care. Involuntary care and/or incarceration may be indicated based on behavior. If the situation permits, an intervention professional may help. If not, a call to 911 may be needed, perhaps including a visit to the magistrate to seek a court order for involuntary care. The public system generally takes control. Obtaining legal advice can be essential at this stage. Supplementing the ‘system’ actions, a family may need to obtain emergency guardianship.
B. Acute and willing to accept care. The person generally meets criteria for hospitalization (posing a danger to self or others) and is, therefore, able to gain access to inpatient care, generally in a local psychiatric hospital or the psychiatric unit of a general hospital. The inpatient stay averages 7.2 days (CDC). Psychiatric units at general hospitals should be avoided and not used as a means to an end. Their main purposes are safety and stabilization, not the long-term recovery of the individual. There is a vast array of private psychiatric hospitals; those who are organized as nonprofits are generally a better choice than the for-profit, chain hospitals because of the focus on the mission versus the bottom line. The best choice is often whichever is nearby, unless the family has access to long-distance ambulance or secures transport services.
i. Not acute and unwilling to accept help, perhaps exhibiting disturbing behaviors, may include substance abuse. This is a special, challenging category. Careful and compassionate inquiry over time may help to discover the fears that are often impeding healing for the individual. Strengthening family boundary setting may be needed. Sometimes a mental health ‘boot camp’ may be needed; there are very few for adults. There are more programmatic options for younger people called ‘wilderness programs’. These can provide disrupting, supportive experiences that spur growth and change and can be accompanied by clinical assessments to assist with future planning.
C. Sub-acute care for semi-stable and “no longer meeting criteria” individuals. Sub-acute care is expensive and not adequately covered by medical insurance, but may be useful for unstable individuals who have not had their needs fully met in a brief acute inpatient stay. They may have been prematurely discharged from inpatient hospitalization, because the high demand/low availability of beds has pushed them out too soon. Commonly, medications will have been increased during the hospital stay but in-depth assessments will not have been made. Some of the sub-acute care options offer in-depth assessments.
i. Sub-acute care to avoid the need for inpatient care. Alternately, individuals who may have de-stabilized but have not met criteria for inpatient care may seek a sub-acute alternative as a way of avoiding further decline, while also being in a professional setting where their mental health condition is more fully assessed. The sub-acute stay is generally 4 to 6 weeks in length.
D. Intensive, relatively short-term programs for substance abuse. These may be needed when the chaos created by substance abuse is more pronounced than the challenges posed by the person’s mental illness. A dual-diagnosis (co-occurring) program is best. It is best to focus on mental health programs that have learned how to address substance abuse versus substance abuse programs that have grown into being dual-diagnosis programs. The latter programs should be carefully reviewed because their capacity to meet mental health needs is often not robust.
E. Intensive, relatively short-term programs for trauma, those on the Autism spectrum, and those with personality disorders, eating disorders and/or for OCD. These diagnoses are seldom isolated from accompanying diagnoses of mood disorders or psychosis and short-term, niche programs may be useful to target issues when symptoms are extreme. Otherwise, it is generally better to utilize a more comprehensive program.
F. Therapeutic Communities. For semi-stable to stable individuals who are voluntarily willing to use an array of mental health interventions offered within a normalized, but contained residential setting. The choice to refer a family to a healing or therapeutic community, referred to as residential treatment centers, may feel like making a referral to a ‘recovery college’. These are liminal places betwixt and between the world of overwhelming diagnoses and living one’s dream for life. They offer the individual an opportunity to set their sights on improved functioning and fulfillment, while giving them the time to gain a sense of belonging, purpose and skill development. The stay in a residential program may be longer, ranging from 6 months to a year or more. The best centers provide community re-integration services, often focused on returning to college, gaining employment or independent living. The best also provide ‘whole person’ comprehensive care, rather than just narrowly focusing on symptoms, medications, etc.
THE CONCEPT OF RECOVERY EMBRACES THE BELIEF THAT INDIVIDUALS WITH COMPLEX DIAGNOSES CAN ACHIEVE AND SUSTAIN HIGH LEVELS OF FUNCTIONING AND FULFILLMENT. THEY CAN CREATE A SENSE OF BELONGING AND PURPOSE AND DEVELOP SKILLS OF RESILIENCE TO HELP THEM NAVIGATE SUCCESSFUL LIVES. BROADER, DEEPER OPTIONS LIKE THOSE OUTLINED IN OPTIONS F - G MAY BE THE BEST CHOICES FOR ACHIEVING LONG-TERM RECOVERY.
The programming at these centers is often a mix of the science of mental health with the art of living in a community. These places offer opportunities to develop resiliency by putting new skills to the test in challenging, real-life but staff-supportive experiences. Some therapeutic communities offer clinical support that approaches the sub-acute level of care options discussed previously. Some higher level therapeutic communities are clinically strong enough to meet the needs of individuals admitting directly from acute inpatient care, bypassing a separate stay at a sub-acute center and, thereby, bypassing further disruption and added cost. Many are also nonprofits, which can further help with cost containment.
G. Community re-integration without residential support. For stable individuals who are able to use mental health interventions to advance their recovery without the containment of a residential setting. When the recovery process can be accomplished in place, the individual does not need to go away from their home-place to begin recovering. Care managers help to arrange for needed support from local mental health professionals and provide access to recovery coaches who can help the recovering individual gain and stay in employment or college, while transitioning from home to independent housing, often a private apartment. Some of these services can be helpful for the individual returning home after an experience in a residential program.
At the end of the continuum, the person in recovery is able to move beyond structured mental health services and enjoy a life with improved functioning and fulfillment, living with a sense of belonging, purpose and resilience. He or she is advised to continue a longer-term but less intensive relationship with an outpatient psychotherapist and/or a psychiatrist. Sometimes, however, more intensive, longterm care may be needed when challenges persist.
Long Term Care Planning For Older Adults
Not all individuals with complex psychiatric issues are able to move into fully independent living. Some with be better suited to long-term care. There are only a few high quality residential options for long-term care available. Some of the therapeutic or healing communities provide limited access to this option. These arrangements are most often accompanied by the formation of Discretionary Trusts. A long-term care manager known as a Trust Liaison is also needed in these situations. Only a few trust companies seem to have interest in trusts where the beneficiary has a mental illness. Public mental health care should also not be forgotten. The public mental health system is all that many families in the US have access to either because of lack of finances (including insurance) or because of behaviors that prevent their inclusion in some of the programs listed previously.
Unfortunately, over 600,000 individuals in our jails and prisons today have a psychiatric diagnosis and receive little, if any, care. Some of these inmates come from well-resourced families. Astute attorneys and mental health advocates can help to get these individuals into care options that are accessible through mental health courts.
Most public mental health systems provide occasional access to a psychiatrist or a physician extender for prescriptions. Unfortunately, the lack of teamwork and time can foster overuse of and over-reliance on medication. Publicly funded group homes and club houses are available but their quality is mixed. Some of the best public mental health care is offered by ACT Teams (Assertive Community Treatment). These teams help individuals maximize their independence and some are very good. They sometimes work in partnership with club houses, designed to provide the more chronically ill person with their highest quality of life.
There Are Many Roads To Recovery
The continuum as described in this document is not meant to be exhaustive or to provide an answer for any particular individual of family. There is no overarching guide that helps a family in need to understand all of their options. Even if there were one, trying to find and navigate the path to recovery is so intensely personal and fraught with challenges, that it is most often good to have a therapeutic consultant along for the trip to help the family deal with the emerging, and sometimes persistent, complexity. Recovery is achievable and requires hard work, not only by the individual experiencing the mental health issues, but by the family as well.