This is part of a dialogue with LaneCare about moving toward a mental health system with more empowerment, self-determination and choice.
February 13, 2008
Should LaneCare either accept the recommendations made by the former LaneCare Peer Advisory Council, or provide clear and complete reasons for rejecting them?
Since the LaneCare Peer Advisory Council (LPAC) has been folded into the Consumer Council, it makes sense that the whole Consumer Council look at this issue. It is a little complex, but easy to understand if you trace out the history of this discussion……..
The Consumer Council is familiar with and has endorsed MindFreedom’s 10 step checklist. This checklist was designed to start shifting the mental health system from its too frequent emphasis on coercion and its bias toward psychiatric medications as the primary intervention, to one that emphasizes choice, consumer empowerment, and a range of alternatives designed to facilitate true recovery.
Rather than just endorse the checklist, LPAC transformed it into a set of recommendations to LaneCare that were put into general policy language, which LPAC believed would be a reasonable step toward actually getting some of the 10 steps into action. This set of recommendations can be found below, immediately following this one page explanation.
The Operations Council, after some months of committee ping pong within LaneCare, then submitted a written response to LPAC. A copy of this written response follows the LPAC recommendations below in this document.
LPAC found the Operations Council response to be inadequate, as most of the recommendations were refused, without a clear explanation for their refusal. At one of the last LPAC meetings, LPAC voted to send the written response to the Operations Council response, that you can find at the end of this document. Unfortunately, in the rush of business, Bruce Abel forgot to send anything back to the Operations Council, which is why we are talking about it again today.
So the issue for the Consumer Council at this February meeting is to decide if the Consumer Council also would like to send this request for reconsideration forward to the Operations Council.
Thanks for your attention to this important matter!
LaneCare Peer Advisory Council
1. Increase the freedom of consumers to make an informed choice of different types of mental health interventions.
2. Reduce the use of coercive mental health interventions and a system tendency toward subtly coercing consumers into a single track, medical approach to treatment.
- Clients are not fully or correctly informed about the nature of their condition.
- Clients are not fully or correctly informed about the affects of their medications.
- Clients are not fully or correctly informed about alternative treatments that are available and might produce similar or better outcomes with fewer side effects.
- Appropriate alternatives to the medical model approach are not adequately available.
- Clients are not fully or correctly informed about or provided assistance in reducing or getting off medications.
- Consumer participation and empowerment is not sufficiently supported by the professional community.
We request that the Operations Council incorporate the following recommendations:
LaneCare will establish a goal for the mental health system in Lane County and implement policies to assure that mental health consumers are informed, empowered and supported in the following ways:
- Clients are correctly informed about the nature of their mental health condition and are not misinformed with disempowering, unproven explanations
- Clients are fully informed about the risks and benefits of medical and alternative treatments and encouraged to select an intervention based on informed consent.
- Clients will be fully and appropriately informed about the risks and benefits of psychiatric medications
- When requested, clients will be supported in reducing or ending their dependence on psychiatric medications
- LaneCare contractors will be required to include in their QA workplan a goal toward increasing their organizational empowerment and support of client self-determination
- LaneCare will actively engage and develop peer mutual support networks and other consumer valued treatment alternatives
- LaneCare will adopt a trauma policy that minimizes organizational activities that might traumatize clients.
Operations Council Response
To Peer Advisory Council Recommendations
The Operations Council appreciates the thoughtful recommendations from the Peer Advisory Council. We reviewed and discussed the recommendations on July 24, 2007.
After discussion, the Operations Council expressed support for the adoption of many of the recommendations as principals. However, LaneCare is a health plan and can not constrain clinical or medical practice through contract.
The Operations Council members acknowledge that power differentials between professionals and consumers may leave consumers feeling disempowered. In addition, societal, economic and legal systems may affect clients in similar ways. Some consumers experience the mental health system as unsupportive of consumer choice.
• LaneCare promotes a mental health system where consumer participation and empowerment is supported by the professional community.
LaneCare recognizes that there are many different opinions about diagnosis, treatment approaches, etiology of conditions, and treatment goals and outcomes. Many people believe that recovery from a diagnosed mental illness is possible. The debate includes a variety of definitions of recovery and differences in the role of various treatment options to achieve it. Some people believe that mental health medications are prescribed without considering alternative approaches while others believe that medications provide a greatly enhanced quality of life.
LaneCare supports the concept that informed consumers can participate in the direction of their course of treatment and develop individualized support services to best achieve their goals. Alternative treatments to traditional mental health interventions are available in the community. Some alternatives are mental health treatments recognized by the medical community, while others are not. It is the responsibility of psychiatric prescribers to diagnose and treat mental health disorders using the training and knowledge within their respective professions.
As a Medicaid contracted Mental Health Organization, LaneCare is responsible for assuring that there are medically appropriate mental health choices available for members within the contracted provider panel.
LaneCare does not take a position in support of services outside of those covered by the Oregon Health Plan. LaneCare supports the following:
• Mental health treatments that are medically appropriate and covered by the Oregon Health Plan
• Covered mental health interventions that are strength-based and recovery oriented.
LaneCare and LaneCare contractors will help educate members about how to be effective self advocates. Within the options covered by the Oregon Health Plan, members will be provided opportunities to understand their mental health needs and preferences, select a provider and a treatment approach that matches their needs and preferences, and address concerns that occur during the course of treatment.
LaneCare members will be given information necessary to understand the risk and benefits of the treatment offered. Members can choose interventions from the range of covered services or choose alternatives not covered by the Oregon Health plan.
The following principals guide practice:
1. Clients are informed about the nature of their condition.
2. Clients are informed about the effects of treatment options offered.
3. Clients are supported in participating in the direction of their course of treatment.
LaneCare Peer Advisory Council response to the Operations Council Response:
Thank you for responding to the LPAC recommendations. However, your response has caused us to have “more questions than answers,” and we fail to understand why most of the recommendations we made were rejected, and why the fairly vague versions of the recommendations that were accepted were made into “principals” rather than goals that would be the basis for policy changes.
We wonder if perhaps the way we worded our recommendations may have caused some of the problems. In our recommendations, it was stated that “LaneCare will establish a goal for the mental health system in Lane County and implement policies to assure that mental health consumers are informed, empowered and supported in the following ways…” In your response, you pointed out that there may be limits to what LaneCare can “implement policies to assure…” We now realize that our proposed language presumed that LaneCare has the power on its own to assure certain results, and we agree that it often does not. However, we continue to believe that LaneCare has the ability to influence the mental health system and would like to see LaneCare attempt to exert such influence. We feel that even where LaneCare can exert no financial or contractual “push” it can still exert influence through persuasion and leadership.
While your response included a fair amount of text, it failed to address our seven recommendations one by one and give reasons why particular recommendations had to be rejected or made vaguer. Indeed, it was difficult to discern from your response whether you were attempting to say that some of the goals we seek have already been accomplished, or if you feel you can do nothing at all to accomplish them, or if you simply disagree with the direction of some of them. We would like to know, for each recommendation that was rejected or modified, the specific reason for its rejection or modification.
We also would like to know what barriers may be preventing the adoption of these recommendations as active goals, rather than simply principals. Thank you for your consideration to this request.
Some additional thoughts and questions we have had about your response to us:
Our committee could use more information about your contention that LaneCare, because it is a health plan, “can not constrain clinical or medical practice…..” It seems to us that health plans routinely constrain clinical or medical practice after deciding that certain kinds of care are unnecessary or unlikely to be sufficiently helpful to be worth paying for, and we feel that disempowering mental health treatment practices are both unnecessary and unhelpful! Even where LaneCare may not be able to pass specific “rules” to influence practice, we believe it could nevertheless exert a strong leadership influence, and we would hope that LaneCare would focus on what it can do rather than what it cannot.
Later in your reply you state that “It is the responsibility of psychiatric prescribers to diagnose and treat mental health disorders using the training and knowledge within their respective professions.” This appears to imply that LaneCare cannot influence professionals to do anything that goes against the routine of their profession. Again, we urge you to consider the fact that managed care organizations, in other respects, have not held back from attempts to influence or curtail the activities of professionals when it suited their interests. For example, it was once considered standard practice for many therapists to see clients a few times per week for years: it was managed care organizations, not the professions, which were most active in changing this. Similarly, it would seem that if consumers are misinformed in order to get them to agree to being put on a variety of medications for life, with no information or access provided to treatments that might help them learn to not need such medications or to wean off medications when they believe they are ready for it, then this could also be seen as a high cost intervention that could be reduced in frequency if managed care organizations began to question it.
We aren’t sure what to make of your statement “Some consumers experience the mental health system as unsupportive of consumer choice.” Are you attempting to assert that in reality the system is fully supporting of consumer choice, but that some consumers nevertheless experience it as unsupportive of that choice? If this wasn’t what you meant, perhaps you could try stating this in another way. It would be much more encouraging if you acknowledged that at least at times the system is not as supportive of choice as it might be, and that your goal was to improve in this dimension!
We are happy that people are now talking of “recovery” but we are concerned that many are attempting to downplay or even neutralize this discussion by focusing entirely on definitions of “recovery” that still involve being ill, or less functional than, people who were never diagnosed! Certainly, as you say, “The debate includes a variety of definitions of recovery and differences in the role of various treatment options to achieve it.” However, what position does LaneCare take in this debate? We would hope that LaneCare examines the actual evidence available, which shows that many people fully recover to a level of mental health comparable to the undiagnosed, and that such recovery is much more common in some environments than others (for example in states where psychosocial rehabilitative services are more available.) Paying attention to recovery data would also mean noting that recovery seems more common for people who have somehow managed to get off medications (as demonstrated in a variety of studies, including a recent 15 year outcome study finding that those who recovered were 8 times more likely to be off medication.)
Certainly, no one can guarantee that anyone will recover. However, if a subgroup of people with a given category of spinal cord injury were seen to recover fully, and if it was noted that this proportion increased given certain types of treatment, it would make sense to attempt to provide treatment oriented toward recovery to everyone with that category of injury, unless there were a way to distinguish in advance who would not benefit from the treatment. In the case of a mental health diagnoses such as schizophrenia, no one has been able to reliably distinguish a subgroup that reliably does not have individuals who recover fully, so it makes sense to treat everyone with active attention given to the possibility of full recovery.
Your reply stated that “Some people believe that mental health medications are prescribed without considering alternative approaches while others believe that medications provide a greatly enhanced quality of life.” What is this statement meant to imply? Certainly, some believe that medications provide them with a greatly enhanced quality of life. But the actual data show that medications are not effective for everyone, and that for many medications involve unacceptable costs, even, unfortunately, including early death. We would like to see LaneCare focus on making sure that consumers are offered a choice of alternatives, so that the needs of all consumers are served, rather than only the needs of consumers who believe medications serve them adequately.
Of course, even consumers who believe that medications are providing them an enhanced quality of life are still not being given adequate choices if they believe this only because they have been misled into thinking that everyone with their condition will inevitably continue to be “symptomatic” without medication (such as by “biochemical imbalance” claims), or for example if they have not been informed about medication withdrawal effects and so have concluded that problems that emerged upon sudden discontinuation are due to their own inability to live without medication rather than a withdrawal effect. There is no true choice possible when consumers lack accurate information.
You state that “Alternative treatments to traditional mental health interventions are available in the community.” Certainly, if one turns over enough rocks, one can find some bits of alternative treatments in our community. But your reply appears to ignore our stated concerns about why, on a practical level, such alternatives are functionally unavailable to many or most consumers. For example, due to misinformation, consumers are often led to believe that non-medication alternatives could not help with their problem, and/or they are not informed about medication problems which if known might leave them more interested in alternatives. And, the actual range of alternatives in this community is grossly inadequate. For example, few professionals are skilled in non-medication approaches to psychosis, or know how to help someone reduce reliance on medications or how to provide targeted relapse prevention interventions that do not rely on medications. And there certainly are no teams organized using this kind of approach, even though teamwork in such cases is often essential.
Certainly, we appreciate the fact that you can only pay for services within the constraints supplied by Medicaid rules. However, we believe much more is possible even while staying within the limits of those rules, and would like to see more focus on that.
A specific note about your first “principal”: this principal resembles one of our recommendations but left out any reference to consumers being “correctly” informed. We wish to point out that the quality of the information provided was our key concern, and by leaving out any reference to the quality of the information being provided, our concern is being overlooked. (Incidentally, this might better be changed to something like “Clients are correctly informed about the nature of what is known about their mental health condition and are not misinformed with disempowering, unproven explanations.” Obviously, no professional can fully inform clients about the nature of their health condition when so much remains unknown about mental health problems and conditions!)
We recognize that LaneCare will not be able to accomplish everything laid out in the goals we have suggested. However, we feel if LaneCare establishes these goals and does everything that is in its power to accomplish them, much good could be accomplished. We look forward to further discussion with you about these matters and about how to insure the best possible treatment for all LaneCare consumers!