Planning for the future presents serious problems for parents of people with significant disabilities; when those families are dealing with psychotic illnesses, the future is especially frightening.
Organizations have become skillful at lobbying for humane supports for people with most disabilities. However, for people impacted by the most severe mental illnesses, the future is in the wrong hands.
To understand the problem, look at the taxpayer-funded Alternatives conference being held this week in Austin, Texas. Anyone assuming that this large, annual mental health event is designed to help people with the most severe mental illnesses just needs to study the program carefully.
While its theme promotes "Valuing Every Voice," try to locate what the conference offers for people with psychotic disorders. Actually, you won't find the words "psychosis," "bipolar disorder," "schizophrenia," or even "mental illnesses" in the program, since this kind of labeling is considered to be the problem.
Not only will you not find references to the most severe illnesses, you won't find sessions on the issues that are most important to the well-being of this population. There is certainly nothing about improving the public education campaigns about mental illnesses so that people can receive appropriate help earlier. Nor is there anything about advocating for cognitive remediation programs, even though it is usually these problems that lead to disabilities for people with schizophrenia. Similarly, there is nothing about the educational supports and accommodations available for people with diagnosed disorders.
As well, there is nothing in the four day conference about getting the mental health system to better collaborate with family caregivers whom many adults living with schizophrenia rely on for daily assistance. "Family caregivers" is another absent term, since the consumers (of mental health services) who attend this conference are quite capable of taking care of themselves. In fact, sessions at this conference help train participants to increase their power within the mental health system to deliver mental health care to others.
The psychiatric survivors, whose "voice' is the only voice present at the conference, are people who were victimized by the over-diagnosing and overprescribing of medications they clearly didn't need. They dominate all national consumer organizations in the US and Canada.
The term "alternatives" refers to alternatives to science-based approaches to mental illnesses. Neuroscience understands schizophrenia and bipolar disorder to be brain disorders. Instead of letting the conference participants understand what is known about these disorders, this conference assumes that neuroscience has nothing useful to offer in understanding mental illnesses.
For example, one of the groups presenting at the conference is the controversial Hearing Voices Network (HVN). They are now considered to be important service deliverers in the US and Canada. Here's what the HVN thinks about the value of genetic research:
Psychiatric diagnoses can stop people addressing the links between social and economic policy and mental distress. Essential funds are used in the ongoing futile search for genetic markers instead of addressing the societal issues we know lead to mental health problems.
HVN clearly won't be letting people know about any of the genetic discoveries related to schizophrenia These kinds of genetic links to illnesses have been helping develop personalized medicine that has expanded for people coping with other illnesses.
In previous years, the message to avoid psychiatric medications has been more overt than it is this year. That aspect of this conference came under close scrutiny last spring when a U.S. Congressional Subcommittee began investigating the policies of the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), which is the major funder of the Alternatives conference. Committee members wanted SAMHSA Director Pamela Hyde to justify sponsoring a conference that actively encourages people to stop medications; the response was that SAMHSA funds many events.
A major focus of the Congressional investigation was SAMHSA's opposition to any involuntary treatment. This opposition involves using federal funds to fight involuntary treatment orders that occur under state laws.
SAMHSA's Director of its Center for Mental Health Services, Paolo del Vecchio, is a keynote speaker at the Alternatives conference. His presentation title "Valuing Voice and Choice" makes his message clear. "Choice" means that all people, even if they are profoundly psychotic, should choose whether or not they want treatment. One of the many "Voices" not represented at the conference are advocates for Assertive Outreach Treatment (AOT) programs. Considerable research demonstrates that people receiving mandated treatment under AOT's report less victimization and homelessness, and fewer interactions with the criminal justice system.
Interactions with the criminal justice system by people with untreated mental illnesses has reached catastrophic proportions in both the U.S. and Canada. Anyone new to the convoluted politics at work in this conference might assume that the suffering of this population would be a central topic. Instead, the plight of these people is completely ignored. In fact, groups that support this conference are the same groups that vociferously complained about the recent CBS 60 Minutes episode investigating the situations of mentally ill inmates. These groups complained that this attention promoted stigma.
In a conference that proclaims itself to be "inclusive," one of the most alarming exclusions is the voice of people like HuffPost blogger Erin Hawkes. Erin represents the perspective of many people like my daughter; these are people who have learned to manage severe psychotic disorders and who know that they have benefitted from the involuntary treatment their illnesses prevented them from seeking. Their future safety depends on the availability of this care.
Parents looking to provide the best future for their daughters and sons who depend on them should be alarmed. Families of people with other severe disabilities know that organizations exist which will fight for their well-being. People with the most severe mental illnesses are increasingly at the mercy of those who deny the very existence of their disorders.