Transcript The Developmental Disabilities System in the Next Millenium

National Overview of
Consumer Direction/SelfDetermination:
Challenges and Hopes
Valerie Bradley
6th Annual Aging and Mental
Retardation Conference
Boston, Massachusetts
September 21, 2001
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I live from one tentative conclusion to the next,
thinking each one is final
The only thing I know for sure is that
I am confused.
Hugh Prather
Notes to Myself
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Overview of Presentation
Recent milestones
The power of ideas
Consumer direction:
the outlines
Positives and negatives
Policy implications
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Preconditions for Consumer
Direction
Federal legislation
Decentralization of responsibility
Engagement of families and people with disabilities as
advocates
Closure and phase down of institutions
Expansion of rights movement on
community imperative
Emphasis on outcomes
Exploration of self-determination
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Recent History
“We need residential facilities in different
sizes, in different locations, for different
types of residents, and above all we need
courage on the part of state governments
and our established private institutions to
experiment with and test some new
projects. . . [that embody a] radical
departure from existing practices.”
Gunnar Dybwad, 1960
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Wit is the sudden marriage of ideas which before
their union were not perceived to have any
relation.
Mark Twain
Notebook
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The Tale of Three Ideals
Normalization
Inclusion
Self-Determination
1970’s
1980s
1990s
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Ideal 1 -- Illuminates Institutions
Normalization
Large institutions are
exposed as places
that strip individuals
of their humanity and
connection with
society; community
system is the vision
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Ideal 1 + 2 -- Attack Segregation
Normalization
+
Inclusion
“Home-like” and
“job-like” programs
are criticized
because they
enforce segregation
and do not lead to
community
membership
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Elements of a Supports Approach?
Person-Centered Planning
Circles of Support
Flexible Funding
Family and individual
empowerment
Recognition of choices and preferences
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Ideals 1 + 2 + 3 -- Shift in Power
Normalization
+
Inclusion
+
Self-Determination
For people to have
lives that they
choose and to be
supported in ways
that facilitate their
preferences, people
must have control
over the distribution
of resources.
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The Fundamental Problem
Increasing
Service Demand
Wait List
A Flattening
Resource Base
Gary Smith, NASDDDS
Basics of Self-Determination
People decide what they want
There is support to make decisions
There are real options to choose from
The process is simple and personcentered
With control comes responsibility
An approach, not a model, not a program
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Self-Advocates Said...
That Self Determination means that...
I am a person like all people: My life is my own.
I speak for myself… “Speak Up” “Stick up for myself”.
I make my own choices
I am the boss of my own life.
I make my decisions in my own life.
I do for myself… and not depend on others so much.
I am a person like all people: My life is my own.
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Antecedents Include...
Family support programs,
Personal assistance programs
Employment voucher innovations
Cash and counseling programs
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It is About Changing Systems...
Shifting authority for decision making to the
individual.
Changing the way supports are funded to
give people direct control over dollars.
Changing the role of service providers, case
managers and support staff.
Putting the person into the center of the
relationship between the state and provider
organization.
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How Does it Work?
Individual budgeting
Personally controlled planning process, with
support from family and friends.
Help from a broker or personal assistant to
locate and access supports.
Using a financial intermediary to processes
payments to support staff.
Choice of providers who work for the
individual.
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Factors Facilitating
Change
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Influence of Self Advocacy
Monitors of quality of life and performance
Involvement in policy making
Conduct of training
Legislative lobbying
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Use of Fiscal Intermediaries
Organizations that provide financial
management assistance to individuals and
families (e.g., payment of taxes, payment to
providers, etc.)
Utah
Massachusetts
Kansas
Michigan
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The HCB Waiver Today
Waivers in all 50 States
236,000 persons enrolled
79 waiver program
Total cost: $5.8 billion
Per persons costs are stable
Average cost: about $27,000 per
year
13% live in their own homes; 30%
live with familiesHuman Services Research Institute
Factors
Limiting Change
“We have met the enemy
. . . and he is us”
Walt Kelly
Pogo
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Points of Tension
How do we set personal budgets?
Who does the “broker” really work for?
Do brokers end up with more
(not less) authority?
What about existing case managers?
Do we really need a “fiscal intermediary”?
For adults with disabilities, is this a person or family
driven approach?
Where does this leave traditional providers?
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Tensions, continued
Won’t this cost more, not less?
How do we assure safety and well-being?
Can self-determination exist when another
speaks or “stands in” for the person?
Have we made the process of self-determination
too detailed with the wrong priorities?
How do we define the idea of want versus need
in terms of developing a budget?
How do we ensure equity?
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Who Is “The Self” In SelfDetermination?
Self
Directed
Family
Directed
State
Directed
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Provider
Directed
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Finding Balance...
High
Low
Low
High
Authority Held By Participants
The Fundamental Issues
to Overcome Are:
Technical
Can we figure out ways to make
the structure work in a technical sense?
Political
Do we have the will to make changes to the flow of
money?
Can we abandon program (slot) driven
approaches?
Can we move from supply centered to demand
centered systems?
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Areas for Further Reform
Support advocacy (family support councils, selfadvocacy) and create a training network
Build on some “ripe providers”
Explore new service configurations
Build capacity of direct support staff
Encourage competition
Build community capacity
Give disenfranchised communities power over funding
(also need competent brokers)
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Reforms, continued
Information should go both ways
Support people to be present
Create a forum to discuss issues between families and
individuals
Make waiver funds work for self-determination
Standardize automated accounting and MIS
Define and establish service coordinator roles and
responsibilities
Expand use of fiscal intermediaries with focus on
consumer control
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In Sum, Self-Advocates Said. . .
We need to define self-determination… We
know the principles but people don’t get it…
It’s problems with the doing
that trips people up
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How to Preserve the Revolution
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Thoughts on Revolution
The first duty of a revolutionary is to get away
with it.
Jerry Rubin
To be a revolutionary you have to be a human
being. You have to care about people who have
no power.
Jane Fonda
Every revolution evaporates and leaves behind
only the slime of a new bureaucracy
Franz Kafka
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