WHERE ARE THE "REGULAR" ADVOCATES #NATCON14 ?

It was several weeks ago and I've been trying to put my thoughts together since I watched this in real time.  There was a congressional hearing led by Congressman Tim Murphy.  He is a sponsor of HR3717, Helping Families in Mental Health Crisis Act which is be

Seated at the table before the congressional members, were people advocating on behalf of the community this bill seeks to help.  They each shared their personal experience within the context of the larger picture.  Advocacy.  The message is almost always more powerful when the face of the community can be infused into the message.

The picture is large and it is rather complex.  Treatment of mental illness is challenging.  Pinning down a proper diagnosis so appropriate treatment can be suggested is challenging.  Getting appropriate treatment is challenging in ways that I find to be disgraceful.  Balancing the rights of an individual with a mental illness against the desperation of loved ones who want to see a treatment plan enacted is beyond challenging.  Finding the money to pay for all of this, presuming all of the other obstacles have been addressed may prove to be impossible.

Representative Tim Murphy is a practicing clinical psychologist.  He has the street cred to speak on the issue of mental illness. He understands the challenges of life with a mental illness and he is uniquely positioned to analyze the agencies tasked with providing proper care for those among us who need care.

Before I shoot myself in the foot by shooting off my mouth, I know there are debates swirling about the bill.  There are those who express concern about the rights of individuals to refuse treatment, concerns about what is called AOT.  Assisted outpatient treatment.  I'm sure there are plenty of other concerns by other parties.

Congressman Murphy listened intently during the hearing.  And then he engaged the speakers.  His no-nonsense approach may have offended some but I would not be one of those offended.

He posed a question to the four panel advocates.  He asked for a yes or no answer.

"Did you read the bill?"

Three of them admitted to only reading parts of the bill.  I find this distressing.  How can high level advocates speak on behalf of a community about such an important piece of legislation and NOT show up prepared.  Fully prepared.

I read the bill in its entirety.  The emphasis appears to be on evidence based treatment and the dignity of patients.  It seeks to address what the family members refer to as "HIPAA Handcuffs."  When treating a person with a mental illness, observations from family members are (or should be) a key component in the gathering of information.

Is it possible some might find ways to manipulate parts of the bill causing harm to the very people the bill will help?  Of course.  There are always going to be ways for an enterprising individual with a less than pure agenda to twist the rules. Find the loophole.  For whatever reason.  Engaging a strong and robust community of advocates who understand the importance of evidence based care, advocates whose voices are there as equals, not as tokens, may quell some of the fears.

Those involved in reforming the way we treat persons with serious mental illnesses would do well to realize advocates must be brought to the table.  Not famous people, not people seeking to push the agenda of any organization and certainly not anyone who is looking to make their personal mark.  True advocates with nothing but the best interest of each patient at the heart of what they do, can and will make this work in the way it is intended to work.

From my vantage point, it seems this legislation is a step in the right direction.  A giant step in the right direction.  As it exists today, I can't even say the system is broken.  The fact is, there is NO system.  Any change would be good.  The bill proposed isn't intended to bring about small, incremental change.  It's a solid foundation for a complete overhaul.  It addresses pretty much every angle.  And still, it's just a start but we must start somewhere.

Tweaking may be needed but damn, those who stood before congress on behalf of the community dropped the ball.  You don't show up without a full understanding what is being proposed in its entirety.  That's ineffective.  It's not proper advocacy.  If we don't want to be dismissed, it we want a seat at the table, we simply must do our homework.  If we want to be heard, first we must listen.

The big picture.  Good advocacy requires the ability to look at the whole picture and realize there may be trade offs but at the end of the day, is the change proposed going to improve lives?  The answer is a resounding YES.  How on earth can one expect to be taken seriously if they aren't prepared?  We don't advocate for ourselves, we do so for the betterment of a community as a whole.

Scrutinizing and criticizing just the portion of a proposal that addresses personal concerns is not going to advance the role of advocates in the mental illness arena.  Indeed, it will set back a movement that, when compared to cancer advocacy, is barely off the ground.

How can I say that?  Quite simply, there is a major conference in ten days.  The conference concludes with a lobby day. Although the National Council for Behavioral Health seems to be an umbrella organization, there doesn't appear to be a "normal person" advocate component to this meeting.  The unique perspective an advocate can bring to the conversation is missing and that's a shame.  There is much to be gained when the big people collaborate with those of us in the trenches.

Alas, I am interested in joining the National Council Community Advocates to see how I might be able to help.  Unfortunately, the invitation to click the link to learn more is "coming soon" --

Soon is not soon enough.


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