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Disability, Long-Term Care, & Health Care in the 21st Century (Paperback)
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Disability, Long-Term Care, & Health Care in the 21st Century (Paperback)
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Some people say that a picture is worth a thousand words. The field
of management often uses a "rich picture" systems methodology, "an
innovative tool that encapsulates knowledge relevant to strategic
reform". It is often described in the management literature as a
"soft systems methodology" for linking hard and soft facts in a
cartoon-like representation to illustrate a complex problem simply
and clearly. The following research is presented using the rich
picture methodology to capture the current long-term care and
long-term services and supports (LTSS) crisis. The picture and
narrative rely on expert research from the past and present, as
well as on one-on-one open-ended interviews with key stakeholders
in the fields of disability, long-term care, and health care. The
setting for the rich picture is the ocean, with the current LTSS
ship heading toward an iceberg that represents the barriers and
challenges to systems reform. The "cast" for this rich picture will
provide the substantive descriptions and body of research and
analysis about the barriers and challenges of navigating through
the current system of LTSS. The presentation of the research is
purposeful, so that the reader and the researcher can begin the
voyage together with a snapshot of the problem. The purpose of this
research is to produce new knowledge and understanding of current
experience with and future need for affordable LTSS for people with
disabilities. This research on the State of LTSS Financing and
Systems Reform is the first part in a five-part series that will
tell the story of the current LTSS system to set the stage for the
exploration of future market demands and current gaps in supply; to
explore promising state practices and challenges; and to picture
what the 21st century's comprehensive, consumer-responsive system
might look like and make policy recommendations. The research is
based on five assumptions. First, people with disabilities, whether
young or old, desire and deserve choices when seeking assistance
with daily living that maintains their self-determination and
maximum dignity and independence. Second, the current financing
mechanisms (public and private) will become unsustainable in the
near future without significant reform. The system must be
affordable to all Americans regardless of income levels and must
consider opportunities to leverage public and private support in
new ways without impoverishing beneficiaries. Third, there is an
opportunity with the changing demographic picture of the United
States to explore the possibilities of a universal approach to the
design and financing of services and supports that is responsive to
individuals under the age of 65, as well as seniors with
disabilities, without sacrificing individual choice and
flexibility. Fourth, formal and informal caregiving must be
sustained, examining family needs and workforce recruitment and
retention challenges. Fifth, the approach to quality must examine
consumer direction and control of resources in addition to
traditional external quality assurance mechanisms.
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