Equal Rights for People with Cognitive Impairments

The International Impact of Nordic Welfare Policy

Valerie J. BradleyHuman Services Research Institute

Cambridge, MAUSA

Overview of Presentation

Review major influencesDescribe their translation to US and elsewhereDiscuss ways that ideas bend to culture and politicsMarriage with other ideasNew challenges

Longstanding Nordic Policy Commitments

Moral and ethical commitment to the welfare of allNormalizationLaboratory for innovationSelf-Advocacy

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

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

Dybwad’s Formulation

IntegrationDispersalSpecializationContinuity between services and an ordinary life

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

Hallmarks of Change

In the US, in the 1970s and 1980s normalization provided a construct for criticism that resulted in:Legal assaults on institutionsCreation of group homes and community day servicesRight to educationContinued changes in definition of intellectual disabilities

Critique of Institutions

Normalization

Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision

Attack on Segregation

Inclusion

Normalization +

“Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership

Shift in Power

Inclusion

Normalization +

+

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.

Normalization and Rights

Influenced individuals who were drawn into disabilities field from the civil rights movementProvided a rationale for the remedies in major casesProvided the hypothesis for a variety of studies of deinstitutionalization

Continuing Impact

Olmstead caseWaiting list lawsuitsResistance to euthanasiaPressure to ensure employmentIndividualized funding

Requirements of Olmstead

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

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 resourcesTake steps to obtain new resources

Groups Affected

Long-stay psychiatric patientsChildren in residential care Residents of nursing homes “Revolving door” individuals People who are incarcerated because of a lack of mental health servicesIndividuals on waiting listsIndividuals at risk of institutionalization

Limits of Normalization

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

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

Initial Roots of Self-Advocacy

An apartment of our own, no coddling by staffRight to move in together and have sexMore personal freedom Leave the family home and live on our ownWider range of job possibilitiesPresence when decisions are made about us.

Malmo, Sweden1970

Self-Advocacy Today

Monitors of quality of life and

performance

Involvement in policy making

Conduct of training

Legislative lobbying

Continuing Challenges

Still thinking of people’s needs in a specialized contextUse of the courts has continuing currency but may be at the point of diminishing returnsMust be wary of the intersection between the deconstruction of mental retardation and pressure to reduce what remains of the welfare state

Challenges, continued

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

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