Self Determination: Fad or Inevitability

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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-Determinationthe 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-Deter- mination
1970s
1980s
1990s
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Ideal 1 -- Illuminates Institutions
Large institutions are exposed as places that
strip individuals of their humanity and
connection with society community system is the
vision
Normalization
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Ideal 1 2 -- Attack Segregation
Home-like and job-like programs are
criticized because they enforce segregation and
do not lead to community membership
Normalization

Inclusion
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Ideals 1 2 3 -- Shift in Power
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.
Normalization

Inclusion

Self-Determination
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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

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• 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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FactorsLimiting Change

• We have met the enemy
• . . . and he is us Walt KellyPogo

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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 peoples 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
• Dont be afraid to confront the complexity and
  see a way through it
• Dont get hung up in orthodoxy -- what matters is
  the outcome
• Dont take it personally!

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Ideals 1 2 3 ?
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
Normalization

Inclusion

Self-Determination

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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
• Youve 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 self-determination
• 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