Our Vision of
A QUALITY CONTINUUM OF CARE

FASMI envisions and advocates for a system that provides SMI persons with a full continuum of quality care and support.  Currently, the system in California – and specifically in Alameda County – is broken at so many levels that SMI persons find either very poor-quality care and support or (all too often) none at all. 

Every aspect of care is important to successful treatment and recovery for someone with serious mental illness.  Given the various needs at particular moments and particular areas, FASMI may focus its advocacy on a particular element of care – such as the need for secure hospital beds or improved case management.   However, the overarching goal of our work is to achieve a continuum of treatment and care that is of the highest quality and does not allow for gaps in coverage or support which undermine its effectiveness and cause clients to fall through cracks toward decompensation.

Here, we set out an outline of the key elements of the continuum followed by a section which further develops the principles and concerns underlying the particular aspects of our vision

 

~ Key Elements of a Quality Continuum of Care ~

 

 BEFORE SMI SYMPTOMS EMERGE:

  • Family and community education & counseling, especially at secondary and college levels, when these developmental disorders first emerge. 
  • Early interventions to provide therapy, social supports, medical testing and treatment to help individuals maintain education, employment, housing.

 

WHEN MEDICAL CARE IS NEEDED:

  • A system of treatment that is voluntary when possible but which administers involuntary medically necessary treatment according to revised criteria for involuntary holds before significant deterioration occurs. Such treatment provided in the least restrictive setting available. Long-acting injectable, when appropriate, should be offered to facilitate medication compliance and to preserve gains after individuals return to the community.
  • Sufficient acute & subacute inpatient capacity to assure individuals with SMI can be held long enough to achieve real stabilization and to prevent the trauma & waste of revolving-door short-term crisis triage.
  • Individuals should receive state-of-the-art medical diagnosis to accurately determine best treatment (e.g., review past history, determine if there’s been a traumatic brain injury, test for vitamin deficiency, use MRI’s).
  • Medication alone is not sufficient. Need for psychosocial therapies & support services, including cognitive skills training, work on social cognition, education, individual psychotherapy & individualized, stimulating opportunities (e.g., “art therapy” involves more than just coloring pages).
  • No individual should be discharged from a hospital or jail without a written discharge plan in place. They should be escorted to an appropriate new place to live, ideally by a case manager who has already been meeting with the person while hospitalized or incarcerated so that rapport has been established.

 

CASE MANAGEMENT:

  • Case management teams and doctors must maintain personal connections with individuals as they move across the different levels of service. Teams should visit the client as often as is necessary, ideally daily. 
  • Teams need to be adequately funded & staffed so they are able to effectively manage their cases & respond to individuals’ needs. Aim for consistency of people working with the client (from the psychiatrist to case manager to therapists and mentors) to avoid having a client come to know and trust a provider but then find that s/he suddenly disappears from their life, often resulting loss of compliance and decompensation.
  • If peer support is employed, mentors need to be unbiased & open to the full range of treatment & support options; they must be skilled enough to meet the clients where they are & to actively mentor them (perhaps involving them in WRAP programs). Generally, peer support should not the sole source of support.
  • Support should include assistance with finding employment or attending school.

 

SUPPORTIVE HOUSING:

  • A system of housing with varying levels of support/autonomy so that individuals can move along the continuum & remain permanently & continually housed where they get the appropriate level of oversight and community integration.
  • Housing should provide on-site services when needed – including, e.g., medication management, aid in activities of daily living, housekeeping services, transportation, communal meals, etc. Except for independent living, placements must be more than shelter with non-nutritious meals & unstimulating living environments.
  • SMI clients must be offered individual psychotherapy and other forms of occupational, speech, or other therapies as needed.  Ideally, this therapy would employ the latest forms found to be effective, such as CBT.
  • Day programs should be available, such as IOP/PHP post-hospitalization programs which pick up the client in the morning and provide activities for much of the day, such as months-long recovery groups and activities.

 

FAMILY INVOLVEMENT:

  • Family involvement is essential to the success of treatment & recovery. It should be encouraged at all levels of policy-making, creation of mental health programs, treatment & case management teams.
  • Family caregivers should be provided with respite, therapy, and reimbursements. They should be assisted in connecting to NAMI’s Family to Family classes, to FERC, and to all available support services.
  • There should be family advocates that can speak the language of the families and therapists that are knowledgeable of different cultures.

~ Underlying Principles ~

The continuum of care we envision is derived from basic values which we urge our elected officials and policy-makers to actualize in these ways:

START BY RESPECTING THE INTRINSIC VALUE OF THE PERSON AND BASIC HUMAN RIGHTS.

     People generally seem to agree that society has a duty to provide care and treatment for physical illnesses and disabilities, though weak political will and diverging economic philosophies have often prevented full realization of health care for everyone. Unfortunately, the U.S. doesn’t have a health care system, but rather it has a “health insurance system.”  While insurance may theoretically available to everyone, the reality is that affordability prevents equal access to health care; parity is a goal that has not been fully realized.

      Even if the government does not have a legal duty under to provide health care services to anyone, it does have the power to do so. And, to the extent it is provided, the law provides that health care organizations may not discriminate against persons with disabilities, which includes persons with mental impairments.  In practice, however, persons with serious mental illness do not have sufficient medical care. The key mental health laws in California do not conceive of mental health care as an “entitlement” but only “to be provided ‘to the extent resources are available.’” The result has been a failing mental health system with a rationing of underfunded services, perpetuating disparities and inequities negatively affecting whole segments of society. 

RECOGNIZE THAT “SEVERE MENTAL ILLNESS” IS A BRAIN DISEASE

      Mental health treatment is often wrongly referred to as “behavioral health” which makes it sound like a condition that is under a person’s full control.  That is no accident; it allows society to justify ignoring the problem, reasoning that the SMI persons are responsible for their behaviors. In some cases of neuroses or less-than-psychotic mental conditions, that may hold some truth; if they truly can control the behaviors with the help of psychotherapy or other therapies, they may be able to make choices for which they can be held accountable. 

      In contrast, SMI is not merely a “behavioral disorder.”  Schizophrenia, schizoaffective disorder, bipolar disorder and major depressive disorders are, in fact, neurological disorders of the brain, alongside other biological illnesses.  Our society must recognize them as such. Laws that distinguish mental disorders from other disabilities or mental disorders from other physiological conditions are discriminatory and violate the principles of equal protection and the Americans with Disabilities Act. 

      Moreover, everyone must understand the effect of anosognosia – the condition which prevents a person from recognizing and accepting that s/he has an illness.  It exists with many illnesses but is particularly common among persons with SMI.  Their illnesses affect their brain chemistry.  There is (sadly) a social stigma associated with SMI that makes it scary to admit they have the affliction.  They uniquely face a fear of losing control. Denying the fact that anosognosia exists constitutes an incomplete understanding of real inability of persons with SMI to make free and informed decisions.

GUARANTEE FAMILY INVOLVEMENT

      We insist that family members have a voice in the development of programs and policy decisions, as well as treatment and placement decisions, at all stages in the continuum of care.  Family members are almost always the first responders to the tragic manifestations of their seriously mentally ill loved ones.  They are the ones who know them best and – next to the patients themselves – are the ones who suffer most directly from their conditions.  Their voices deserve preeminent recognition.

STRENGTHEN PREVENTION AND EARLY INTERVENTION 

      Our vision for a full continuum of quality care begins even before the onset of symptoms of SMI.  As science and research are beginning to provide evidence that some psychosis may be predictable, the need for early intervention will begin even before a crisis exists.   Meanwhile, the medical (including psychiatric) community needs to be prepared to treat anyone who manifests mental health problems, but particularly those with serious mental illness.  All health care providers must have adequate knowledge and training to recognize the symptoms of serious mental illness. 

      Many factors in a person’s life can lead to a high probability of developing a SMI, including genetic predisposition, adverse childhood experiences or other trauma, and use of psychosis-triggering drugs.  We support a long-term outlook that would get out ahead of the problem, following models of care that precede hospitalization, including early diagnosis, delivering adequate care earlier, and implementing protocols to monitor for onset of symptoms.

MOVE OUT OF THE CURRENT CRISIS MANAGEMENT APPROACH 

      The failures in our current system start at the very beginning of the onset of psychosis.  We cannot wait until a patient’s situation becomes dire to begin intervention and treatment – which is the current approach.  Recognizing this is the first step toward minimizing the deterioration that results from progression of the illness and long-term negative experiences in an uncaring system. 

      Unfortunately, the first call for a prompt response usually comes as a surprise to clients and their families when they experience a dramatic incidence of psychosis – often a terrifying break, serious paranoia, delusions or hallucinations.  The primary focus tends to be on shutting down or controlling the immediate distress and abnormal behaviors; the focus is on the crisis stage but stops there.

      Crisis management is important but not sufficient. SMI is not a temporary crisis but a long-term, serious illness.  Sufficient medical and community programs must be in place to deal with SMI from the moment of initial manifestation followed by a long-term plan for the various stages of the illness. 

DECRIMINALIZE MENTAL ILLNESS

      Without a doubt, we need options to police involvement in crisis situations, since that escalates the tension and stress of the situation and exacerbates the mental illness.  We also want to see persons with SMI placed where they can be treated instead of in jail; we object to the continued funding of the carceral system, including Alameda County’s planned “hospital within a jail.” We advocate for the co-operation of judges and prosecutors in keeping the SMI out of the carceral system by all means possible, including the use of such options as CARE Courts, diversion programs, AOT orders, etc.

INVEST IN SUFFICIENT, QUALITY TREATMENT RESOURCES FOR ALL STAGES OF RECOVERY

      Clearly, each community needs a system of well-trained first-responders and easily accessible resources for families from the onset of symptoms. Information should be easily available and effective, appropriate skills uniformly taught. 

      (1)  ENSURE QUALITY HOSPITALIZATION AND EFFECTIVE TREATMENT 

      Too many hospitals (public and private) do not provide secure, healing, and treatment-rich environments.  They need to provide some space that is secure (locked) to enable stabilization of the SMI.  Ambulances that may be called upon to transport SMI persons should not be faced with limited choices regarding which hospitals will take the patient.  Private hospitals too often fail to provide locked facilities so that they do not have to take and treat SMI patients.  SMI crises must be treated like any other emergency which hospitals must accept and treat, regardless of insurance status.

      Furthermore, as one advocate has put it, the ideal treatment of mental illness is the kind which mentally ill persons willingly accept and gratefully cooperate with. This may be a high aspirational goal, but it is one for which we want to strive.  We agree that persons with SMI should not be kept in hospitals longer than they need to be, but that is not the current problem. To the contrary, the problem now is that hospitals practice a “catch and release” approach, temporary stabilizing people in crisis and discharging them too soon so that they end up back in the emergency room over and over again.

     (2) IMAGINE AND CONSTRUCT STATE-OF-THE-ART PHYSICAL ENVIRONMENTS   

     Persons with SMI need healing environments just like persons with other illnesses do. For too long, psychiatric hospitals and other treatment facilities have been barely better than the asylums that existed before the deinstitutionalization overhaul of the 1960’s.  They are often old, dingy, unpleasant places, sometimes re-purposed from abandoned nursing homes or other second-hand buildings, with sterile facility designs that reinforce a stigma associated with mental health treatment. Even public hospitals should and can be soothing, supportive environments, built using state-of-the-art design principles that improve patient health & well-being.  We must find the necessary funding and political commitment to build efficient and safe, welcoming and humanizing spaces – spaces which allow patients privacy but also spaces to interact, using design strategies that can help reduce agitation and create a positive, healing environment.

      (3) GUARANTEE SUFFICIENT HOSPITAL CARE

      Not only must the facilities be more appealing, but the care given there must meet the standard required of all medical treatment.  Persons with SMI who are hospitalized must have the right to all treatment that is medically appropriate and necessary.  They must be able to trust that they will not be discharged before they have demonstrated that they are stabilized to the point that immediate re-hospitalization is not predictable. To ensure this, they must not be discharged without a clear, written discharge plan that describes follow-up care in an identified, secured or other appropriate facility where supportive services are guaranteed and case management is reliable and effective.

      (4) BUILD AND MAINTAIN AN AMPLE AND WELL-TRAINED MENTAL HEALTH WORKFORCE. 

      Together with plentiful facilities and programs, SMI clients need LOTS of support from trained and professional providers, clinicians, case managers, etc. We know that there is currently a dearth of such personnel and we strongly support its enhancement via recruiting and hiring, education and training, satisfactory wages and benefits, and healthy work environments. 

PROVIDE FOR APPROPRIATE HOUSING WITH INDIVIDUALIZED CARE, TREATMENT AND SERVICES 

      Each person’s experience of mental illness is unique. What works for one person may not work for another.  Individual treatment plans are essential.  They require abundant medical personnel and service providers who can work with each individual to determine that person’s unique illness and its manifestations, and devise effective plans for supportive care, including transitions from step to step.  This is not a novel idea; California provides these services to persons with physical disabilities; those with SMI deserve and need the same individualized care, attention, accommodations and services.  

      This is particularly problematic when it comes to placement and housing. There is a dearth of housing and social supports that would allow persons with SMI to live and function successfully in the community. But it is essential to recognize that housing placements for those with SMI must be appropriate for that person’s abilities and needs.  One size does NOT fit all. Some persons, depending on the severity of their condition, daily living skills and ability to function with a great deal of autonomy, can appropriately be placed in rent-subsidized housing in the community, perhaps even with minimal supportive services.  At the other extreme, some persons with SMI cannot function well with-out nearly 24 hours of supportive services, including medication monitoring, psychological support and guidance, assistance with financial management, etc. To randomly place such persons in scattered housing merely to make them “integrated in the community” is doomed to failure. 

      California must invest in a wide variety of living situations so that persons with SMI can find the same individualized care and support as persons with other disabilities are now guaranteed.

SUMMARY

      In summary, we are calling for a multi-disciplinary approach that integrates inpatient and outpatient treatment in a continuum of care encompassing both medical care and the social supports needed to enable those with severe mental illness to live their best lives. We believe that providing these services is less costly in the long run, but more importantly, will reduce the human suffering caused by inadequate treatment and ca