CENTER FOR SELF-DETERMINATION

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We seek nothing less than adoption of the principles of self-determination by and with respect to people of disabilities of all ages as a commonly held social value. We hold this truth to be self evident: Our society continues to regard people who are different---by virtue of color, race, gender, old age, physical disability or cognitive disability---as somehow less than whole, less worthy, less deserving of respect, less capable, and in constant need of protection and paternalistic assistance to manage their daily lives.

Self-determination rejects this dominant cultural assumption, that old age in America, when accompanied by disability or physical or mental decline is pathological loss and diminution of worth.

Instead, we posit that all people with disabilities, including people who are elderly, are worthy of respect in the full meaning of the word, and have the capacity and right to flourish, irrespective of the nature or degree of disability.

The right to flourish in old age means concretely that individuals who age with disabilities be accorded a new found and profound respect based on the principles of self-determination. These principles need to guide public policy and private insurance, create consonance between the two, and support the liberation of older individuals with disabilities within our communities, our homes, our places of worship, culture and play.

These Principles are operationalized in close personal relationships, private enterprise and commercial behaviors, traditional and non-traditional not-for-profit activities, and public programs. In general, they are expressed as follows:

• FREEDOM The ability to decide where and with whom one lives, to escape isolation, loneliness and abject poverty in old age, and be heard and respected in every aspect of one's life.
• SUPPORT Both informal and formal supports must be available in sufficient measure, responsive and tailored to the unique desires and preferences of the individual/couple with a disability.
• AUTHORITY Control of public and private dollars for these unique supports must rest with the aging person with a disability and their freely chosen family, allies and delegates.
• RESPONSIBILITY The exercise of all the freedoms that are guaranteed to Americans, the wise use of public and private dollars and the contribution that these individuals bring to our communities, our culture and our political world.
• CONFIRMATION The valued role that individuals with disabilities must play in the design, creation and execution of all public policies affecting them.

The underlying goal of "the Right To Flourish" is acceptance and advocacy for the ethical postulate that each of us, irrespective of age, ability, intelligence, physical prowess, beauty, wealth or poverty is entitled to respect that posits life with dignity. Wonderful examples of this respect include:

• The ways and means of hospice care
• The best relationships implicit in self-determination approaches for those with developmental disabilities
• The support amenities provided in independent living programs for individuals with significant physical disabilities

In each of these examples, those dying, people with developmental disabilities, people with significant physical disabilities have all proceeded with the personal belief in individual worth and their capacities to enjoy their unique status as human beings, entitled to respect for themselves by themselves and by others.

A major barrier for those elderly individuals, however, is the endemic belief that old age brings inevitable decline in worth as biological decline imposes limitations on activity and capacity. The generally held standard of successful old age is to stay middle aged forever. What Max Lerner wrote in his 1957 commentary, America as a Civilization, is, unhappily still true today: " (Americans) treat the aged like the fag end of what was once good material . . . . the nicest thing you can say to an older American is that he doesn't look his age or act his age, as though it were the most damning thing in the world to grow old."

The result for elderly individuals with disabilities has been to consign them to "colonies." Indeed, we have financed, built, and maintained some 23,000 such "colonies" with 1.8 million beds which are regulated to assure safety and health.

This "solution" to biological decline has nothing to do with how elderly individuals perceive it. These individuals universally abhor the thought of ending their days in a nursing home. And yet they acquiesce in the "solution". Worse, there is little outcry from the traditional advocates for the elderly to undertake the system reform, the massive change in prejudicial attitudes about the worth of the elderly with disabilities. The Elderly Mystique holds the aged in its thrall; that disability in old age is an unmitigated disaster which precludes joy, enthusiasm, engagement, or significant power to control one's fate.

Self-determination rejects that conventional wisdom.

• Self-determination requires a more critical evaluation of the nursing home solution.
• Self determination sets a path and a direction for the exercise of power and control over one's fate in old age, irrespective of disability, gender, color, intellect, or wealth.
• Self-determination sets out the principles of Freedom, Support, Authority, Control, and Confirmation as the foundation of specific targeted programs, populations, and methods.

Self-determination requires changes in cultural assumptions about the nature and meaning of Old Age in America, system reform in how individuals, communities, states, and the federal establishment support disability in old age, and systematic improvements in the economics of late life for the individual.

Demonstration initiatives must include overarching efforts at dissemination and involvement of those who are old, those approaching old age, and those who care about elderly individuals.

Suggested demonstration elements may take the form of:

• Broad-based efforts aimed at changing community values
• A measurable demonstration of new ways of doing things
• Development of new educational curricula
• New forums for discussion and exchange
• The identification of necessary data collection
• The identification of new outcome measures of respect and control
• Consensus on outcomes desired by elderly individuals
• New approaches to support decision making for individuals with cognitive disabilities, particularly for those who have lost or may never have had the ability to articulate in conventional speech their preferences, desires, likes and dislikes

Specifically, we target the following:

1. Initiation of demonstrations with the private long term care insurance industry to favor in-home care for chronic illness and disability that place control of resources with the person with the disability and/or his family, next best friends, and those who care about him/her.
2. Massive reduction in the use of long term care facility placement as the solution to disability in old age, and concurrent system reform of public and private arrangements for providing supportive services for elderly individuals with disabilities.
3. Initiation of analysis and demonstrations of protective services both within and without the judicial system to assess new ways of providing needed protection within the "softer" parameters of self-determination, avoiding excessive intrusion on preference and choice-making, and honoring known likes and dislikes.
4. Development of a research agenda which better measures needs, desires, and outcomes of services and supports. This requires at the outset an assessment of existing literature bearing on self-determination for the elderly, collection of existing data on disability among the elderly and the programs addressing such, and the framing of research questions which bear on the issue. The range suggested is vast, extending from the projected changes in mortality and morbidity experience of old age, longitudinal studies in health, wealth, attitudes, and other matters, economics of disability in old age, manpower implications, and research into existing and changing ethical standards.
5. Development of a dissemination strategy which better enlists the elderly, those who care about them, service providers, and third party payers. This involves identifying existing structures which may or may not be useful, initiating efforts to enlist existing movements whose goals are congruent with self-determination in aging, and development of techniques which include both conventional and internet methodologies.
6. Manpower implications of the massive shift in LTC methodology implicit in the goals
7. Study and evaluate the economic implications and projections of alternative courses of action to achieve the goals.

The implementation of self-determination as the governing element in meeting the needs of elderly individuals with or confronting disabilities and those who care for and about them requires deliberate long term effort involving both cultural value and system reform across a wide swath of social institutions.

Center forSelf-Determination

Advisory/Steering Committee Members

Self-Determination in Aging Initiative