Bizarro World: The Many Ways Our System Fails the Mentally Ill
When you substitute "meningitis" for "mental illness," the dramatic loss of funding, resources, diagnosis, treatment, and positive outcomes, becomes visible . . . and heartbreaking.
Imagine a bizarro world, where meningitis is rampant. It contributes to or causes tremendous costs to corrections, social services, medical systems, hospitalization, workforce, family disruption, etc.
Some teachers and other professionals do not believe that these disorders even exist, and blame the behavioral manifestations on the students' "bad attitude," or on "bad parenting." Teachers, even those whose caseloads consist primarily of students who have these disorders, have little educational background about them. Some have been told in their training programs that their attention should be limited to the behavioral manifestations of the disorders, and that the "medical model" has no place in the schools.
- Another disorder, encephalitis, is closely related, and also causes similar problems, costs, etc.
- The two disorders combined affect nearly one out of five children, adolescents, and adults.
- Neither can be effectively treated without treating the other.
- Both are easily identified, using the correct tools.
- Both have proven methods of treatment.
- When students have these problems, their peers and their school professionals are frequently aware of them.
- Federal law might result in schools having to pay for treatment of these disorders, and school professionals are instructed to never recommend evaluations or refer for diagnosis and treatment.
- School assessments, though not diagnosing these problems, identify their accompanying symptoms, and design elaborate behavioral systems that attempt to manage behaviors resulting from the problems.
- Some teachers and other professionals do not believe that these disorders even exist, and blame the behavioral manifestations on the students' "bad attitude," or on "bad parenting." Teachers, even those whose caseloads consist primarily of students who have these disorders, have little educational background about them. Some have been told in their training programs that their attention should be limited to the behavioral manifestations of the disorders, and that the "medical model" has no place in the schools.
- Most people who have these disorders never receive treatment, and many are not even aware that they have a disorder.
- Public awareness about the nature and extent of these disorders is limited, and there is a significant stigma attached to having them.
- Although there are a number of well trained professionals who can effectively treat these disorders, the majority of people who do receive treatment do not see these professionals.
- Treatment is generally provided by medical professionals who have very limited training about these disorders.
- There is no agency providing oversight to this treatment, as governmental decisions have directed oversight only to the specialists who are doing a small percent of the treatment. There is no requirement for continuing education, for example, for the generalists. Even when education programs are provided to professionals, there is no incentive for the generalists to attend (no CME credit).
- Although these problems are clearly a public health issue, their oversight is generally provided at a state and county level by social services agencies. This often results in a blurring of focus in regards to the nature of the disorders, and difficulty separating these disorders from similar adjustment related social problems resulting from social disruption, poverty, etc. In fact, individuals who have these disorders tend to have a downward social drift, and many of their social problems are the result of, and not the cause of their disorders.
- Most services focus on individuals with severe meningitis and encephalitis, at high cost and with limited results. Many if not most of these individuals had a predictable deterioration to this level of dysfunction.
- Prevention efforts are often diffuse, and not necessarily focused on those individuals at highest risk of developing the problem.
- Even among trained professionals, treatment providers rarely evaluate or treat these problems together, despite their co-morbidity.
- Evaluators of meningitis have little awareness of how to identify encephalitis, and vice versa. Despite their frequent co-occurrance, even the most basic screening tools are not utilized to identify coexisting problems.
- Patients with these problems are like ping pong balls, passed back and forth between systems that cannot treat them because they have the other problem.
- Despite these problems frequently being present in both the parents and their children, there is no concerted effort to screen for or identify the problems in the parents when the kids are evaluated or vice versa. (This could be construed as stigmatizing or blaming the parents). Professionals who treat the parents may have little training in the identification of child/adolescent problems, and don't see this as their role, anyway.
- Managed care organizations limit payment of services based on bizarre criteria for example, if an adolescent has meningitis and also has conduct disordered behavior (that may have resulted from the disease), he may be seen as not amenable to treatment, that is not medically necessary. He or she may then go to a correctional program that has no resources to treat the illness.
- Programs offered by treatment providers focus on those most likely to benefit from services. This treatment model is encouraged by the payors, and is the easiest to provide. However, the majority of the most disabled and expensive individuals do not fit this model of service. Despite being more severely disabled, they tend to receive little or no treatment for their disorders.
- Interventions take place with a very small percentage of affected individuals. Funds may focus on providing "wraparound" programming, e.g., fixing the car, YMCA membership, etc. based on family requests. The overall effectiveness of this type of program on the overall societal problems has not been established.
- The systems of services in which these individuals are served are fragmented. A neurological case manager position has been established whose job it is to coordinate services with these agencies. The case manager only serves a tiny fraction of the most severely affected individuals, and spends much time reinventing the wheel, one client at a time. If the systems were working in a coordinated manner, most services would be provided effectively even with only limited case management services, and to all affected individuals.
- Kids on M.A. have a significantly higher prevalence of these disorders (2530%), and are overrepresented in all systems that provide high cost services to these kids. All kids on M.A. are entitled to screening that should identify these disorders and result in a referral for treatment. Yet, only 6% receive the full screening. Of those who are screened, only approximately 2% are referred for treatment.
- There is no method of data gathering for each system that allows administrators to even be aware of the nature and extent of these problems in their clients.
- People continue to provide services in the various systems to affected individuals despite data indicating that many of these services are ineffective in their present form.
Now, how could such a world, populated with intelligent, committed, and concerned people, possibly exist?
(Hint: substitute "mental health" and "chemical health" problems for meningitis and encephalitis.)