1. Working from the Inside
Human Rights and the Virginia System

2. Introduction Some comments on the Virginia’s world view.
Human Rights and working from the inside.
A little about me…
Lots of discussion!
What I planned on talking about
Human Right in VA
Human Rights and Advocacy
Working from the inside - Chesterfield
A little about me
What else?

5. The world according to Virginia
County-based Systems of Care.
Localities verses regions
What about the money?
Who gets what and how?
Policy and Decision Making.
Who really makes the decisions?
How do things really work…
First understand that not everyone does it like VA does
CO example of advocacy & human rights
Remember, all CSBs are independent
like little islands, some more remote than others, some more developed than others
all the 7 Regions are different
Most CSBs make decisions about their services and systems with little restraint from the outside ( i.e. DMHMRSAS).
Some county governments assert more control than others..usually through county money
Region 4 - Henrico
Implications
Systems for monitoring and supporting Human rights and the complaint process vary widely
Most are subsumed under some kind of Quality Improvement System
Advocacy is not a major element
The Human rights regulations and the complaint system are meant primarily to deal with facility (institution) problems.

6. Really Big Hospitals DIGRESS - State Hospital Comparisons
Massachusetts adult population ~4.8m
Virginia adult population ~5.6m
1973 to 1993: 12 of 16 Massachusetts state psychiatric hospitals were closed.
Massachusetts average daily census of 21 consumers patients per 100,000 adults
Other states average daily census of 18 consumers per 100,000. (Connecticut, Maine, Michigan, Minnesota, New Hampshire, Ohio, Pennsylvania, Vermont, and Wisconsin)
Virginia average daily census of 26 consumers per 100,000, 30% more than comparable states.
THIS REPRESENTS A VALUE AND HAS DRIVEN THE HUMAN RIGHTS ISSUES.
The system’s message becomes “these people are sick, they can’t make good decisions”
recent example - smoking
The system does not ADVOCATE or encourage SELF ADVOCACY…it looks to determine if someone’s “rights have been violated”.

7. Money is Driving the System Not the Consumer
Biggest impediment to a Consumer Driven System is MONEY
More money does not necessarily transform the system, but don’t be fooled…it’s all about the money
Driven by what consumers need
Dedicated funds
consumer run services
CO direct funded drop-in centers
Flexible funds
wrap around services
CO dog fence story
Consumer providers
Flexibility means you can invest in supporting advocacy, rights and a fair complaint process
Change Values and Beliefs
Standup, speak out, be valued

8. Human Rights and Advocacy
Different models of advocacy.
It is not ...“The customer is always right”.
It is … about having a voice and having real supports to self-advocate.
Different models of advocacy - no “best approach”
self-advocacy - gather advice, info & take action
mediation - bring together both parties - outcome=an agreement
complaint & grievance - an agency process resulting in “findings”
regulatory - bureaucratic enforcement of regulations
legal - enforcement of the law
protest - awareness (outrage)
community advocacy - system intervention
Value based process that seeks satisfaction from the consumer’s point of view.
How does this happen?
Forced by regulation or law
if not…build it yourself - Chesterfield policy
“any dissatisfaction” = complaint
based solely on “the consumer’s perspective”
One must be informed in order to self advocate
support up and down the system for consumers to “self-advocate”

9. Advocating from the Inside
Building Leaders and Promoting Leadership
Different styles
“A leader is best when people barely know they exist…”
Self Disclosure
Biggest consumer issue when working from the inside...
Social avoidance
Secrecy
Selective Disclosure
Indiscriminant disclosure
Broadcast
The best leader allows people to follow their own vision.
How do you find this out? It is a skill you develop...
We (consumer community) under emphasize the importance of training consumer leaders
Very important when working on the inside…
Know who you are and what is important to you
Think long term relationships…short term gains
Seek support of the agency leaders
Expect to have to reeducation providers
Expect to have to reeducation consumers
Engage everyone who is will in the process
What happens when you start to talk about yourself.
Determine what you are comfortable with and what is going to work best for you.
Personal experience does not = credibility
my first complaint & staff reaction (who the h… are you?)
Why fight for this?
We know in our hearts it is what we must do!