SW 644: Issues in Developmental Disabilities Normalization Roundtable Discussion

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SW 644 Issues in Developmental
DisabilitiesNormalization Roundtable Discussion

• Lecture Presenters
• John OBrien, Ph.D.
• Lynn Breedlove, Executive Director, Wisconsin
  Coalition for Aging
• Charles Degeneffe, MSSW
• Aaron Bishop, MSSW

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Video
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Normalization Concept and Origins

• Post-WWII context United Nations declaration of
  human rights
• Late 50s - early 60s took form in Scandinavia,
  Denmark, and Sweden
• Focus on quality of life and material standards
  disability no longer basis of exclusion or control

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Video
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Effect on Availability of Services Today

• New consciousness re institutions
• Movement away from institutions to smaller, more
  disperse settings

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Popularity and Growth of Normalization Principle

• Wolfensburger systematic formulation of
  different ideas
• Christmas in Purgatory by Burton Blatt
  condemnation of institutional model
• Ben Neria visit to U.S. and scathing remarks re
  human rights violations

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Law and Public Policys Role

• Blacks in the U.S. - separate but not equal
  (Brown v. Board of Education)
• Cultural bias in testing
• Disabled veterans movement and lobby

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The Normalization Principle

• Social stigma constraint - Presidents Committee,
  Kennedy family involvement, and parent movements
• Technical support
• A vehicle for change

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The Normalization Principle (cont.)

• The parent movement early endorsement
• Key people Neria, Wolfensburger, and OBrien
• Three roles of people with developmental
  disabilities 1) human being, 2) citizen, and 3)
  developing person

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Adherence to Normalization Precepts

• Normalization defined using culturally valued
  means to establish conditions that are as
  culturally valued as possible
• By 1972, operational definition of normalization
  assessment tool for service programs
• Normalization principle as ambiguous and contested

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Adherence to Normalization Precepts (cont.)

• Issues of choice and autonomy
• Deconstruction of the normalization principle
  Mark Gold and Lou Brown
• Open organizations to challenge the existing
  structure

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An Agent for Change

• Individual level and program level changes
• Ladder metaphor

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Searching for Solutions

• Peoples position(s) in a system not relevant
• More and more people in federal and state
  government asking the question, Can we get out
  of peoples way?
• Rising awareness of disability as public issue
• Maintaining the structure of exclusion
• Ladder metaphor

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Searching for Solutions (cont.)

• Example(s) of how the system gets in the way of
  peopleliving the life they want or programs
  trying to be innovative
• WI Medicaid Waiver programs outright
  prohibition for spending money on community-based
  employment

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Criticisms

• Integration still not experiencing community
  participation and relationships
• A lot of people in congregate settings
• Segregated schools in Wisconsin
• Antiquated traditional group homes and sheltered
  workshops
• Control still in hands of professionals
• Self-determination lack of progress

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Criticisms (cont.)

• Normalization misinterpreted as forcing people to
  conform
• A colonial concept articulating peoples
  experiences and cooking up prescriptions
• Scientific community call for empirical
  evidence
• Recognition that normalization principle is
  political

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A Tragic Theory

• A theory that says, What were going to discover
  is imperfection
• Helping people make their next step will also
  create difficulties
• Example people with disabilities having more
  choice

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Potential for Frustration

• The way out of the situation is to get into it
  deeper
• Involves strength and courage and learning
  through joint experience
• Most people spend most of their time just
  surviving every day
• A heightened appreciation of contradictions

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Potential for Frustration (cont.)

• The notion that there are common experiences in
  lives of people with disabilities - a social
  (systematic) pattern
• Recognizing that we play a role personally and
  systemically in magnifying peoples vulnerability
• Our model of dealing with peoples need for a
  decent place to live and some assistance is to
  weld them together

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Understanding People with Disabilities

• Need to appreciate peoples resistance and
  resilience, gifts and contributions
• Opening the economy to people with substantial
  disabilities
• Need to understand how people are vulnerable and
  how people can contribute

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Current Understanding of Normalization

• A vision of our communities
• Relationships of people with disabilities
• Roles of people with disabilities in their
  communities

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Guiding and Shaping of Services

• Implementation of principles not yet complete
• Wolfensberger need for greater precision in
  concept of identity
• Ideas of integration, choice, and support
• Basic notions still intact, though terminology
  may be changing
• New viewpoints and resources provide
  opportunities for theoretical and practical
  synthesizing

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Consensus Re Normalization Among Service
Providers

• Wisconsin strong adherence in principle but
  perhaps not in practice
• Reference to a historical period
• New era of self-determination
• Congregate institutions and the banner of
  normalization
• Need to ask, Is that really as much as we
  possibly can do?

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Locus of Change

• Personal - necessary that change happen in
  relationship between person with disability,
  people assisting, and people in community
• Policy opens up a new path for lots more people
• Need to make more individual paths possible