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ON advocacy and change

Posted Feb 01 2010 9:52pm

You hear a lot of people talk about the need for change in the mental health system.  The needs are obvious.  Many people who need help never receive it.  Many people I know report as many problems dealing with the mental health system as they do with the mental health issues that plague their life.  The shortcomings of the medical model are well known.  More and more people talk about the recovery model and it is gaining more widespread acceptance.  There are changes occuring, but they seem slow and small.  For many people too slow and too small-  they strive for a new “piety” in thought and write-off anyone who disagrees with them as being sucked into the “psychiatric conspiracy.”  But their anger is based on a valid point.  Why do things change so slowly when it seems so obvious that many things dont work as well as advertised and many people with mental health issues doubt the credibility and effectiveness of the system that is supposed to be helping them?

Here are some thoughts on the process of advocacy and change.  They are my opinions and I make no claim for special truth for them.  They make sense to me and taken in whole at least give an outline of a way to improve the mental health system.  I do not begin to think they answer all questions or give all answers.

  1. There is no “one mental health system.”  It is different from place to place.  It is fragmented, poorly coordinated, and poorly funded.  It costs “too much” and as funds get tighter and more services get cut it will have more and more problems adequately serving people.  It is different from state to state, country to country, city to rural, public to private.  The differences are real and matter.  If you assume there is just one system that is the same everywhere you miss the point.
  2. A system fighting for its financial survival is unlikely to consider much in the way of changes.  It will instead try to protect what it considers its core services.  If mental health becomes an elective thing to fund  the debate becomes not about “a better system” but how important is any system.  A financially strapped system is more resistant to change, not less.
  3. Any system that does not recognize that mental health and physical health are closely related is inadequate.  Wellness is one of the most neglected topics in mental health.  Related to this the mentally ill tend to be more likely to be unemployed, more likely to be poor and thus more likely not to have health insurance.  Increasing access to doctors is a necessary part of any chance of wellness.
  4. Things are seldom black and white.  As inadequate as care frequently is it helps people.  Stats relating to Tennessee and North Carolina discussed in previous posts clearly demonstrate this.  The safety net in Tennessee which served 25,000 people last year had 183 psychiatric hospitalizations.  North Carolina, which has drastically cut community services, has had a tremendous increase in psychiatric hospitalizations.  The contrast is glaring. 
  5. Any proposal for change that is based on “rescuing consumers from the system” and that minimizes the impact of mental illness in the lives of people is unlikely to make any kind of changes in the system.
  6. The system will change by evolution, not by revolution.  The history of the mental health system shows this.  It has changed in response to historical trends.   A seed is planted and an idea gradually comes to make more and more sense until it becomes the “common sense thing” to do.  The evolution of the recovery model to becoming more and more a mainstream idea is one example of this. 
  7. Any attempts to advocate based purely on polemic are unlikely to succeed.  It will not matter how justified your position, the tactic, I believe, is likely to back fire.  Convincing people who already agree with you that you are right is unlikely to make anything different.
  8. In the United States much of what the mental health system is defined by the actions of state legislatures.  Any attempt at change must be credible to them.  For example, statutes about commitment or AOT are state creations.  If you cannot convince state legislators you are unlikely to make many changes.  Most of the mental health system is the public system and that is strictly a matter of what is sold as credible to state legislatures.
  9. Proposals for new programs and services based primarily on anecdotes, regardless of how many or how convincing they are, are unlikely to bring about much change.  At the bottom line, mental health is what funding services agree to pay for.  They have their own criteria of what seperates “experimental services from proven services.”  They are unlikely to pay for anything “experimental.”  That is true of physical medicine.  It is also true of mental health services.
  10. New research could be the foundation of mental health system changes that geniunely make things better.  Many people have written research off as the possesion of pharmaceutical companies and the result has been a powerful source of change has been under utilized. 

Like I say these are some things that make sense to me.  They do not describe all issues or provide all answers.  In some of these points I may be wrong.  But taken together they provide at least a framework for a way to look at advocacy.

People with mental health issues in their life deserve a fair chance at a decent life and often they dont have that.  Much conventional wisdom is neither really very wise or very effective.  And the consequences of this are tragedy for those most in need.

A little while back I made a post about the “peer link” program in Tennessee.  This program is a perfect example of a way to effectively advocate for real change.  The post is reprinted below for those who did not originally read it.  But it is based on a clear model (the recovery model).  It proposes to test out an idea.  Peer support services can be an integral part of the mental health system.  In fact it can be more than an adjunctive service, but has impacts other services dont have that only makes those services more effective.  It is cost effective and indeed saves longer term costs.  And a major university (Yale) is using this program as a research project that may lead to the proliferation of this model.  The Tennessee Mental Health Consumers  Association (TMHCA) got an insurance company to agree to fund this pilot project.  I am very hopeful that projects like this one plant seeds that lead to more research, more projects and ultimately moves the recovery model toward being the accepted way of doing things in the mental health system.

I hope this has given some food for thought.  I realize that many people will differ with me and that is very much okay.  Discussion always leads to better results than monlogue.

Second look: Peer link

A brand new program is starting in Tennessee that hopefully has a chance to powerfully demonstrate the effectiveness of peer support.  Tennessee Mental Health Consumers Association and Ameri-choice (a peer run program and a managed care company- perhaps the biggest miracle of all) have started a program they call “peer link.”

It is a one year long research program that is being followed by Yale University that hopefully will give a powerful push to the peer support approach in Tennessee and indeed the country.

The basic idea is this.  51 people have been identified who are “chronically mentally ill.”  These are people with multiple hospitalizations, and a history of being stuck in the system.  These are the people who by all conventional wisdom should not make it.  Each one of these people will be paired with a certified peer specialist who, in effect, will act as a recovery coach helping them to access the system, get their needs met, offer them the support of someone who has been there and sees things in a way that most case managers or therapists cant.  The goal will be to see these folks become successful.  Among some of the data will be hospitalizations, jail time, homelessness, and other things that would without help be part of these folks experience.

Hopefully what it will show is that, no only are people helped in ways previously unseen, but that peer support can be used as a cost effective way to bring down the costs of service delivery at a time when all mental health systems are dying for the dollar.  It offers peer specialists a unique role and a chance to prove they have an integral role in the system.

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