SD & Systems Change: Building a Strong
Design & Planning Team
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•
•
•
Basic Building Blocks
Working Team
Team Member Roles
Task List to
Implementation
• Challenges
• Goal Setting and
Attainment
• Outcomes &
Accomplishments
• Implications
• The Realities of Systems
Change
Building a Strong Design & Planning Team: The
Basic Building Blocks
FloridaSDC (Self-Directed Care) –
The Beginning
– Grass-roots effort by volunteer advocates in
Northeast Florida with the goal to “fix the
broken system of care.”
Building a Strong Design & Planning Team: The
Basic Building Blocks (continued)
– Met with State leaders (elected and
appointed) to discuss the problems with the
current system of care and what it would
take to bring about positive improvements
– Task Force created in 1999 that published a
final report of recommendations in October
2001
Building a Strong Design & Planning Team: The
Basic Building Blocks
Local NAMI chapter presidents and core
advocates in NE Florida invited:
• Individuals with first-hand experience in the current
system of care
• Local and State elected and appointed officials
• Behavioral healthcare providers, private and public
Building a Strong Design & Planning Team: The
Basic Building Blocks
Local NAMI chapter presidents and core
advocates in NE Florida invited:
• Developmental Services experts (Cash & Counseling)
• Medical professionals
• Others and their expertise added as the Task Force
evolved
• Research material was obtained relating to SDC
concept from Fl/other states/nationally
Building a Strong Design & Planning Team: The
Basic Building Blocks
Time commitments were intense for the
TaskForce:
• Two years of weekly meetings with travel for
some in excess of one hour to the central
meeting point
• Average attendance 30 people with 10 core
planners
Building a Strong Design & Planning Team: The
Basic Building Blocks
• Pilot project created by Chapter 2001-152,
Laws of Florida
• FloridaSDC operational - October 2002
Building a Strong Design & Planning Team: The
Working Team
• Program participants
• Community Grass-Roots/Program Participant
Advisory board (51% participant composition;
49% conflict-of-interest free members)
• Project staff
• Project director
Building a Strong Design & Planning Team: The
Working Team
• Florida State University
• Each component integrally linked as a total
team effort
• Communication!!
Building a Strong Design & Planning Team: Team
Member Roles
• Program participants-#1 stakeholders
• Community Grass-Roots/Program Participant
Advisory board
• Project staff
• Project director
• Florida State University
Building a Strong Design & Planning Team:
Implementation
• 30 months to move from taskforce report to
outcomes (normal business cycle is 60
months)
• The basic question to answer: What happens
when people with psychiatric disabilities have
complete control of the public dollars allocated
for their mental health care?
Building a Strong Design & Planning Team: The Task
Create a system of service access wherein the
individual has complete say and complete
choice in the services and providers he or she
deems necessary to achieve a personally
defined level of recovery from a diagnosed
mental illness.
Building a Strong Design & Planning Team: The Task
Basic parameters:
– Independent brokerage
– Conflict-of-Interest free third-party administrator
– Community advisory board composed of true
stakeholders
– Cost neutral
– Community safety maintained
– Create a 100% demand driven system of managed
care
Building a Strong Design & Planning Team:
Challenges
• Small pilot (100 participant capacity, less than
1% of overall number of individuals eligible for
services in the state)
• Community concerns about safety (for
individuals in the program in as well as for the
community members)
• Cost to administer
Building a Strong Design & Planning Team:
Challenges
• Funds from existing state contracts with
community mental health providers were
moved to the project (i.e., “money follows the
person”)
• Competency vs. Capacity
Building a Strong Design & Planning Team:
Challenges
• System resistant to change
• Middle management of state oversight agency
discouraged local support for the program
• Evaluation team not experienced in paradigm of
self-determination
• “Dumping” of “difficult cases” by community
mental health providers
• Support from key leaders at state level of
oversight agency, but their plates were full
• Entitlement versus ‘working’ the program issues
Building a Strong Design & Planning Team: Goal
setting and attainment
• The “Hat Pin” lady
• Actions speak louder than words (vs. ‘lip service’
from ‘supporters’)
• Keeping the “prize in sight”
• Working together at all times
• Working together as a precision team
• Communication with members of the team,
participants, the system, the public
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• In the first 19 months of the program's
operation, only 16% (22 of 140) of all
participants were hospitalized, and only 6% (8)
were hospitalized involuntarily.
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• True pride in accomplishments as a whole team
• True pride expressed by participants as they
began to realize their potential—”You mean we
don’t have to be trailer-trash anymore?”
• Fun
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• In an evaluation comparing participants’
experiences in the year prior to joining the
program with the year after, on average,
participants spent a significantly greater
number of days in the community (i.e., not in
institutions such as jails or hospitals) after
joining the program than they did in the year
prior to program enrollment (t-value=3.1,
d.f.=104, p<.01).
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• Participants scored significantly higher on the
global level of functioning scale in the year
following program participation than they did in
the year prior to joining the program (ttest=6.9, d.f.=104, p<.001).
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• A notable proportion of FloridaSDC
participants engaged in some type of
productive activity including paid employment
(34%), vocational skills training (19%),
volunteer activities (16%), post-secondary
education (7%), and General Equivalency
Diploma classes (3%).
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• Participants demonstrated a high level of
responsibility in how they managed their
individual budgets. The large majority (87%)
spent up to 50% of the money they were
authorized to spend on their recovery.
• Only 10 individuals who joined FloridaSDC
decided to return to traditional case
management services.
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• Of the $181,197 in program costs over 19
months of operation, participants spent a total
of $58,450 in direct purchases of services,
supports, and material goods. Of that total,
47% was spent on “traditional” clinical
recovery services such as psychiatric,
therapeutic, and counseling services.
• (cont. on next slide)
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• (cont. from last slide) Another
13% was spent on
recovery support services that were
complimentary to traditional mental health
services such as education, self-help books,
health and exercise. Another 29% was spent on
tangible purchases designed to enhance
community integration such as food and clothing.
In addition, 5% was spent on dental services and
3% on ophthalmology /optometry services.
Finally, 3% was spent on transportation.
Building a Strong Design & Planning Team:
Outcomes & Accomplishments
• As a result, the 2004 Florida Legislature further
refined the pilot with refinements and expansion
based on lessons learned from the initial pilot to
ask “Through several key multi-agency waivers
and knowing that managed care is on the horizon,
can we build a managed care system of access
that gives people with psychiatric disabilities the
opportunity to recover and improve their quality of
lives and maintain program intent and integrity,
and save money?”
Implications:
• FloridaSDC, mandated by Florida Statute
394.9084 expands and refines a pilot designed to
give people with psychiatric disabilities the
opportunity to improve their quality of life through
control of the public dollars allocated for their
mental health care using self-determination as a
financing mechanism (President’s New Freedom
Commission Report, & Report to the President
from The President’s Committee on People with
Intellectual Disabilities).
Implications:
• The first real steps that give people who have
been historically denied the right to choose, the
right to not only choose their path to recovery, but
manage various tools to improve their overall
quality of life.
• We have shown, through the original pilot, that
people with psychiatric disabilities can more
successfully manage their care.
The bigger picture: Medicaid
• The Centers for Medicare and Medicaid
Services (CMS) is highly responsive in the
area of self-determination for people with
psychiatric disabilities; Congress should
continue to provide this agency with support
and encouragement to further expand selfdetermination as a financing mechanism to
access services.
The bigger picture: SSA
Social Security Administration:
• Florida Freedom Initiative for people with development
disabilities. For people with psychiatric disabilities, we
need:
– Buy-in from upper levels of SSA to create a state
pilot project involving a waiver for people with
psychiatric disabilities as they have for other
projects with other disability groups.
– Recognition from SSA that IDA (Individual
Development Accounts) should be used flexibly.
The bigger picture: SSA
– Eliminate the marriage penalty: Studies show that
expenses do not decrease when people marry,
regardless of income level.
– Eliminate the practice of ‘paying people to remain
disabled’ by separating eligibility for subsidized
income from eligibility for Medicaid/Medicare
benefits.
– Provide direct access to benefits planning and
assistance so that they can take advantage of the
waiver and all it has to offer without endangering
their economic safety net or access to health
insurance.
The bigger picture: VocRehab
Vocational Rehabilitation/WFIA:
In Florida, people with psychiatric disabilities are the
most underserved by this agency (see annual state
reports).
• The US Code allows Vocational Rehabilitation (VR) to
administer innovative pilots, including those that test
the outcomes of allowing individuals to direct their own
vocational rehabilitation plans. Requires the state to
include description of program in their state plan that
must be approved at the federal level.
The bigger picture: VocRehab
• People with psychiatric disabilities are often
discouraged and likely not deemed eligible to
participate in advanced job training; this is not
related to capacity, rather the subjective judgment of
the VR employee. Evidence in the literature shows
that career placement and testing is best used as a
guide, and that more often than not individuals do not
choose the career they ‘tested’ out as most likely to
be successful in.
The Realities of the Challenge of System Change
• For people with psychiatric disabilities, we must
– Give them the same opportunities as any other
American seeking assistance through Vocational
Rehabilitation, including the opportunity to selfselect career/employment placements, by giving
them the option of cashing out their VR monies to
spend on services and supports that help them
return to work.
– Recognize that people can recover from mental
illness just like any other illness (vs. developmental
disability - where there is skill training, but not
recovery and rehabilitation)
The Realities of the Challenge of System Change
• Systems will ‘self-correct’; be prepared for that
inevitability, resist discouragement
• Resistance is system-wide
• Actions speak louder than words
• Performance is everything
• Don’t give up
In Closing…..SD & Systems Change:
Building a Strong Design & Planning Team
•
•
•
•
•
Basic Building Blocks
Working Team
Team Member Roles
Task List to Implementation
Challenges
In Closing…..SD & Systems Change:
Building a Strong Design & Planning Team
•
•
•
•
Goal Setting and Attainment
Outcomes & Accomplishments
Implications
The Realities of Systems Change
Client
Psychiatrist
I feel sedated
You are not psychotic
I’m still hearing
distressing voices
You are not agitated
I can’t think clearly
You are not thought disordered
I feel like the meds are
controlling me
You are more in control
I’m not myself
You have returned to baseline
Pat Deegan PhD & Associates © 2004
Peer to Peer Workshop
Using Medications As Part of the Recovery Process
• The importance of personal medicine
• Medication Action Planning (MAP)
• Becoming an active healthcare consumer and effective
self-advocate
• Shared Decision Making and Decision Aids
Pat Deegan PhD & Associates © 2004
The Side Effect Trap
I feel depressed and
can’t do the things that
give my life meaning…
So I go off the
medications but
eventually…
I go for help and take
meds…
The meds make me so
sedated that I can’t do the
things that I value most and
that makes me more
depressed...
Pat Deegan PhD & Associates © 2004
Nancy’s Power Statements
• Being a good mom is the most important thing in
my life and is vital to my recovery
• I am not willing to sacrifice being a good mom to
clinical depression OR to medication side effects
• You and I must work together to find a
medication that does not interfere with my ability
to be a good mother
Pat Deegan PhD & Associates © 2004
Common Ground
Recovery Oriented Practice
• Supporting Client Choice
• The Role of the Peer Practitioner in Direct
Service
• Respectful Communication
• Professional Boundaries
• The Role of the Direct Service Worker in
Supporting Recovery
Pat Deegan PhD & Associates © 2004
The Dignity of Risk and the Right to Failure
• Do not pathologize poor choices that people with
psychiatric disabilities make. Poor choices,
mistaken judgments, lack of insight, repeated
mistakes and self-defeating choices are not
necessarily a reflection of mental illness. They
are ways that most of us grow and learn!
Pat Deegan PhD & Associates © 2004
The Neglect - Over Protective Continuum
It’s the client’s choice.
We are supposed to
support choice. Let
him/her do what
he/she wants.
We can get the client to
do the right thing.
Arrange things so
he/she she has to do it
our way.
This is neglect, not
empowerment
This is Over Protect
and is toxic help
Pat Deegan PhD & Associates © 2004
Responding to Client Choice
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The Comfort Zone
The Conflicted Zone
The Non-negotiable Zone
In an agency that is implementing CommonGround,
there will be a shift away from the non-negotiable zone,
toward creative engagement with clients in the conflicted
zone. This shift is rooted in:
– New philosophical perspective
– More effective way of working with clients
– Redirection of resources and staff training priorities
Pat Deegan PhD & Associates © 2004