Equal Rights for People with Cognitive Impairments

1
Equal Rights for People with Cognitive
Impairments

• The International Impact of Nordic Welfare Policy
• Valerie J. BradleyHuman Services Research
  InstituteCambridge, MA
• USA

2
Overview of Presentation

• Review major influences
• Describe their translation to US and elsewhere
• Discuss ways that ideas bend to culture and
  politics
• Marriage with other ideas
• New challenges

3
Longstanding Nordic Policy Commitments

• Moral and ethical commitment to the welfare of
  all
• Normalization
• Laboratory for innovation
• Self-Advocacy

4
Influence on Ethical Treatment of Minorities in
the Courts

• To separate them from others of similar age and
  qualifications solely because of their race
  generates a feeling of inferiority as to their
  status in the community that may affect their
  hearts and minds in a way unlikely to ever be
  undone.
• Justice Earl Warren, relying on Gunnar Myrdal
  (American Dilemma, 1944), in Brown v. Board of
  Education

5
Normalization takes root in the US

• But only now I begin to see how terribly
  important is the the concept of normalization.
  . .It is a concept that is elegant in its
  simplicity and parismony. It can be readily
  understood by everyone and, at the same time, it
  has far-reaching implications.
• Gunnar Dybwad, 1968

6
Dybwads Formulation

• Integration
• Dispersal
• Specialization
• Continuity between services and an ordinary life

7
The Idea Spreads

• making available to all mentally retarded people
  patterns of life and conditions of everyday
  living which are as close as possible to the
  regular circumstances and ways of life of their
  society.
• giving society a chance to know and respect
  mentally retarded persons in every life and to
  diminish the fears and myths that once caused
  society to segregate them
• Bob Perske, 1977

8
Hallmarks of Change

• In the US, in the 1970s and 1980s normalization
  provided a construct for criticism that resulted
  in
• Legal assaults on institutions
• Creation of group homes and community day
  services
• Right to education
• Continued changes in definition of intellectual
  disabilities

9
Critique of Institutions
Large institutions are exposed as places that
strip individuals of their humanity and
connection with society community system is the
vision
Normalization
10
Attack on Segregation
Home-like and job-like programs are
criticized because they enforce segregation and
do not lead to community membership
Normalization

Inclusion
11
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
12
Normalization and Rights

• Influenced individuals who were drawn into
  disabilities field from the civil rights movement
• Provided a rationale for the remedies in major
  cases
• Provided the hypothesis for a variety of studies
  of deinstitutionalization

13
Continuing Impact

• Olmstead case
• Waiting list lawsuits
• Resistance to euthanasia
• Pressure to ensure employment
• Individualized funding

14
Requirements of Olmstead

• Comprehensive plan for moving individuals out of
  institutions and accommodating those on the
  waiting list
• Reasonable assessments by state professionals
• Plans to ensure that residents are placed in the
  community at a reasonable pace
• Identify necessary funds including potential new
  or expanded resources
• Take steps to obtain new resources

15
State Requirements

• Develop plan for institutionalized residents
  (public and private)
• Implement plans to ensure that residents are
  placed in the community at a reasonable pace
• Identify funds necessary including potential new
  or expanded resources
• Take steps to obtain new resources

16
Groups Affected

• Long-stay psychiatric patients
• Children in residential care
• Residents of nursing homes
• Revolving door individuals
• People who are incarcerated because of a lack of
  mental health services
• Individuals on waiting lists
• Individuals at risk of institutionalization

17
Limits of Normalization

• Becoming the basis for an argument about the
  death penalty
• Problematic in a society without a generalized
  welfare state available to all
• Becomes a potential weapon by those who would cut
  budgets

18
Recent Innovations Lessons of Decentralization
for the US

• There is a continuing if qualitatively different
  role for central leadership
• In order to ensure comparability of services,
  have to ensure that workers are trained in values
  and relevant skills
• It is important to have a basic entitlement
• Specialized systems have to become part of
  broader generic systems
• Need to involve larger community

19
Initial Roots of Self-Advocacy

• An apartment of our own, no coddling by staff
• Right to move in together and have sex
• More personal freedom
• Leave the family home and live on our own
• Wider range of job possibilities
• Presence when decisions are made about us.
• Malmo, Sweden
• 1970

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Self-Advocacy Today

• Monitors of quality of life and performance
• Involvement in policy making
• Conduct of training
• Legislative lobbying

21
Continuing Challenges

• Still thinking of peoples needs in a specialized
  context
• Use of the courts has continuing currency but may
  be at the point of diminishing returns
• Must be wary of the intersection between the
  deconstruction of mental retardation and
  pressure to reduce what remains of the welfare
  state

22
Challenges, continued

• Need to find ways to allocate scarce resources
  while recognizing the choices and preferences of
  individuals
• Development of a cadre of leaders to carry the
  values of normalization and inclusion far into
  this century.

23

• In that chasm between facts and rhetoric, we may
  find wisdom. But in our field, there are many
  issues where facts are not sufficient to discuss
  the truth. In our field, facts often become
  truth only when they are tested by articulated
  values.
• Burton Blatt, 1987