Equal Rights for People with Cognitive Impairments The International Impact of Nordic Welfare Policy Valerie J. Bradley Human Services Research Institute Cambridge, MA USA

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

Longstanding Nordic Policy Commitments Moral and ethical commitment to the welfare of all Normalization Laboratory for innovation Self-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 Integration Dispersal Specialization Continuity 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 institutions Creation of group homes and community day services Right to education Continued 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 movement Provided a rationale for the remedies in major cases Provided the hypothesis for a variety of studies of deinstitutionalization

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

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

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

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

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

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 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

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 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

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.

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