Long-Term Care - Illinois General Assembly

• Families have not abandoned their elders. They provide 80% of all care, but life
circumstances often make it difficult. They often experience guilt, burn-out and suffer
economically and emotionally as a result of the caregiving role. They are usually women.
≡ A more flexible system of services is necessary, so that care is focused on the person
and his or her family.
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Consider paying family members for the assistance they provide.
• Build upon Illinois’s focus on client-centered care, so that the client becomes the center of a
system that unites finances, services, and family.
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Have funding follow the client, rather than cover discrete services. Other states, such as
Wisconsin, are experimenting with county-wide programs that make access and
eligibility determination simpler, while “bundling” resources to bring the client what he or
she needs on an individualized basis. The state needs to be more flexible, to give the
case manager more options and more latitude. Consider a “supermarket” system that
allows flexibility in available services. Public money should be available to the eligible
senior, regardless of the setting in which the care is provided. There should not be a
bonus for getting care in a nursing home.
Assume that nursing homes are the alternatives to other ways of providing the help that
older people need to live out their years with a sense of fulfillment and continuity with
their past. Although we think of home and community-based care as the alternatives to
nursing home, we should reverse that order. If there is any bias, it should encourage
prolonged stays at home, in the community.
• Alter the way information about services are made available. Agencies that do case
management and provide home care services operate on a normal business day. Nights
and weekends and the lack of comprehensive information from any one source can become
very difficult for the older person and his or her family.
• The federal Olmstead Act gives a particular impetus to the “choice” of keeping people in the
community. Care at home and in the community-is important because, home is the reservoir
of memories; it represents security; it is a piece of yourself and the source of pride; it is
where we feel the most like ourselves because it is familiar; it is where the possibilities for
real autonomy exists—when we can live in habitual ways; it is where the possibilities for real
dignity exist—where people can be treated as unique individuals. If paid care can be wellblended,
with care provided by families and friends ; it costs less than institutional care; and
an older person has some control over the care that they receive
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One’s own home is not the only possible site of care in the community. It is important to
consider how we might broaden the range of options for housing people in the
community beyond home. In addition to assisted living and supportive living, we need to
include such options as adult family homes and shared housing. Any housing would
result from planning that included older people and their families and would be designed
to facilitate privacy, support individual uniqueness, incorporate families and friends as
partners in care in ways that are convenient and doable for them.
Develop programs that assist people in nursing homes to return to the community. Such
a system would be good for the elder and would also provide the funds to significantly
augment home and community based service wages and options.
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