Transcript The Developmental Disabilities System in the Next Millenium

Self Determination:
Fad or Inevitability
Valerie J. Bradley, HSRI
WORK INC Speaker Series
May 19, 2000
Natick Massachusetts
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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
The more things change. . .
Recent milestones
The power of ideas
Self-Determination:
the outlines
Bothersome constraints
What can we do?
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Looking Back
Century begins with optimism
Moral treatment and notions of asylum
Linkage between cognitive disability and
crime/poverty
Great Depression and the eugenics movement
Institutional overcrowding after WWII
1960s -- beginning of reform era
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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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Major Milestones
Public accommodations
Decentralization of responsibility
Engagement of families and people with disabilities as
advocates
Closure and phase down of institutions
Expansion of rights movement to
individual supports
Emphasis on outcomes
Exploration of self-determination
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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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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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Self-Determination
Individuals control the use of funds for their own services and
supports. This includes authority to make choices among
providers and support approaches, and to change those choices
over time.
Individuals are aided by individuals with no stake in the service
system
Individuals are able to hire and fire staff.
People are available to assist in paying the bills
Maximum use is made of existing resources
Supports are made more flexible
A trend is a trend is a trend
But the question is, will it bend?
Will it alter its course
Through some unforeseen force
And come to a premature end?
Sir Alec Cairncross
1969
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Factors
Limiting Change
“We have met the enemy
. . . and he is us”
Walt Kelly
Pogo
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Complexity: Mastering the
Mechanics
How do we ensure that individual budgets are
fair and equitable?
How will individual budgets be determined?
Who keeps track of where the money goes?
How will management information systems meet
the challenge
What happens when something goes wrong?
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Organizational Change
How do we help existing providers to
reorganize?
How do we harness and hear the wisdom of self
advocates?
How do we change organizational cultures?
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Inevitably, the culture within which we live
shapes and limits our imaginations and, by
permitting us to do and think and feel in certain
ways makes it increasingly unlikely or impossible
that we should do or think or feel in ways that
are contradictory or tangential to it.
Margaret Mead
Male and Female
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Service Brokerage
Where will service brokers come from?
How do we minimize turnover?
How can we create reasonable job
expectations?
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Creaky Quality Assurance Systems
How will we protect people’s well-being while
minimizing intrusion?
How do we involve people with disabilities and
their families in setting policies regarding QA
How do we ensure that families and people with
disabilities have sufficient resources to secure
what they need?
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Changes in Systems of Support
Decentralization
Less supervision
Altered expectations
Increased technology
More responsibility
Blurred roles
Increased isolation
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Factors Facilitating
Change
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Creative Use of Waivers
Wisconsin and Minnesota
Utah
Pennsylvania
Stimulus from HCFA in response to Olmstead
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System Redesign
Vermont – Radical changes in system financing
Pennsylvania – Long-Range Plan
Maryland- Wait list initiative
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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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History of Innovation
Wisconsin
New Hampshire
Oregon
Vermont
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Leadership
New Hampshire
Massachusetts
Pennsylvania
Ohio
Michigan
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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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Next Stages of Reform
Increased power to consumers and families
Maturing of self-advocacy
Deconstruction of “total” services
Integration of funding
Elimination of work disincentives
Reform of quality assurance
Translation of research to practice
Improvement of information technology
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Most Importantly. . .
Listen to people with disabilities -- as
participants, as advisors, as consultants, as
friends, as colleagues
Don’t be afraid to confront the complexity and
see a way through it
Don’t get hung up in orthodoxy -- what matters is
the outcome
Don’t take it personally!
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Ideals 1 + 2 + 3 + ?
Normalization
+
Inclusion
+
Self-Determination
+
Almost certainly, shortly
into the next millenium
there will be another
powerful idea that will
help to enhance and
sharpen our vision -- our
job is to make sure that
we are ready to receive
it
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Final Words
Without resistance you can do nothing
Jean Cocteau
To profess to have an aim and then to neglect
the means of its execution is self-delusion of the
most dangerous sort
John Dewey
You’ve got to be a fool to stop the march of time
Pierre Auguste Renoir
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Group Discussion
Pick one aspect of your organization that you could
change over the next year that would facilitate selfdetermination:
–
–
–
–
–
Service configuration
Staff training
Individual planning
Self-advocate involvement
Development of support
options
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Develop a plan that
– Sets time-lines
– Spells out specific outcomes
– Describes involvement
of staff and constituency
– Identifies constraints
and facilitating factors
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