Part Two of a Preview of Independence & Transition to Community
Living: The Role of Independent Living Centers
1998
by Bonnie O'Day
Editor's Note
Last month's Readings in Independent Living was the first of two previews
of a study on how centers can assist consumers to move from nursing homes
into the community. As you may recall, we asked Bonnie O'Day to take the
lead in conducting this important study.
Last month's preview featured background information on why centers should
make assistance to people living in nursing homes a center-wide priority.
In this issue, the preview focuses on O'Day's recommendations for increasing
efforts to assist people to live in their communities.
Background
In July of 1993, ILRU sent a brief three-page survey to all in its directory
of centers in the U.S. to obtain an overview of the extent of center involvement
in assisting consumers to leave nursing homes for life in the community.
The survey asked centers to explain services offered and how these services
were funded, to describe formal and informal relationships with nursing
homes or other institutions, to highlight specific efforts to serve minority
populations, and to list major problems people with disabilities face
in making a smooth transition to the community.
The top two problem areas identified by centers in the survey were lack
of accessible, affordable housing and inadequate PAS. These are analyzed
in the monograph--the analysis being based upon a literature review, legislation
and other legal documents, and interviews with center staff and other
leaders of the independent living movement. Based upon these responses,
six exemplary programs were selected for further study. They include ENDependence
Center of Hampton Roads, Norfolk, Virginia; Liberty Resources, Inc., Philadelphia,
Pennsylvania; Wyoming Independent Living Rehabilitation, Inc., Casper,
Wyoming; Topeka Independent Living Resource Center, Topeka, Kansas; Independent
Living Center of Amsterdam, Amsterdam, New York; and Independent Living
Resource Center, San Francisco, California.
These exemplary programs represent a cross section of centers including
large and small centers, those serving urban and rural areas, and those
with formal contracts with state agencies to provide transitional services,
as well as those which provide services more informally. The author interviewed
each executive director or other center personnel by telephone. Interviews
lasted one and one-half to two hours each, not including follow-up telephone
calls to obtain additional clarification. Persons interviewed had an opportunity
to review the final draft of their chapters in the monograph for completeness
and accuracy.
Overview
Moving from nursing homes or remaining in the community after onset of
a disability is a formidable challenge requiring considerable planning,
problem-solving, and emotional fortitude. People who wish to move from
institutions into the community face a wide array of obstacles, including
lack of PAS, lack of independent living skills, few financial resources
to make the move, social stigma, inaccessible housing, and inadequate
transportation. This inadequacy of support systems in place to allow for
comfortable and safe community living makes the move impossible for many
citizens.
However, over the last 15 years, independent living centers have been
a vital link for people wanting to move from nursing homes and other long-term
care facilities into the community. By providing information and referral
about community resources, peer counseling, independent living skills
training, individual and systems advocacy, and assistance in obtaining
accessible housing and PAS, centers enable hundreds of individuals with
severe disabilities to leave custodial care for independence every year
and have allowed thousands more to stay out of nursing homes and remain
in the community.
This project has shown that centers are fulfilling one of their original
missions--assisting people to leave nursing homes for community integration.
Almost all centers who responded to ILRU survey (96%) said that they served
nursing home residents, providing assistance ranging from an informal
array of traditional independent living services to more formalized arrangements
where one or several center staff are dedicated to helping residents move
out. Over half of the centers responding said they had assisted more than
five residents and about ten percent said they had assisted more than
20 consumers to make the move.
However, much work remains to be done to reach the thousands of people
of all ages still incarcerated in institutions. Because most of these
individuals are elders, members of racial or ethnic minority groups, or
people with severe physical and mental disabilities, centers must creatively
expand their services to reach populations that have traditionally been
excluded from living independently. The six exemplary programs highlighted
in this monograph present innovative approaches that can be used as prototypes
for centers wishing to serve nursing home residents more effectively.
Recommendations
While centers' transition programs vary depending upon the needs of the
local community and the target population, the following conclusions and
recommendations can be drawn from the six exemplary programs.
The major thrust of transition programs should be advocacy for systems
change to prevent institutionalization. Long-range planning and a strong,
united advocacy effort are required for maximum success. Centers should
agree among themselves upon strategies and outcomes before advocacy is
initiated.
Centers, local communities, and society at large all benefit from avoiding
institutionalization. Allowing people to remain in the community minimizes
personal trauma for the consumer and saves valuable staff time and financial
resources. Centers should advocate for expansion of Medicaid waiver programs
to include a broader array of services and supports. Even minimal policy
changes, such as redefining funding for home modifications and adaptive
equipment, can mean the difference between remaining at home or moving
to an institution.
The Idell S. case, brought under the Americans with Disabilities Act
(ADA), offers strong implications in support of deinstitutionalization.
Independent living centers and other proponents of community integration
should work with legal service organizations to seek compliance with the
ADA's "most integrated setting" mandate in their state long-term
care and Medicaid programs.
To insure effective prevention of unnecessary institutionalization, center
boards, staff, and consumers should become knowledgeable about the nursing
home reform amendments of OBRA '87 as well as how Medicaid waiver programs
are being implemented in their state.
Centers should insure that a higher proportion of minorities are served
in nursing home transition programs than is reflected in the general population,
since people of color are disproportionately represented among nursing
home residents. While no conclusion can be drawn about whether or not
distinct services for multicultural populations are needed, it is clear
that center board and staff composition should reflect the racial and
ethnic mix of the consumer population. Most important multicultural issues
should be considered at the program design stage, not as an afterthought.
Additional information is needed about how various populations can be
served effectively. NIDRR should consider setting aside additional funds
for studies specifically addressing multicultural issues.
Board members, staff, and volunteers who have been institutionalized
and have made a successful transition to independence can have a powerful
impact on convincing nursing home residents, medical professionals, and
others of the viability of independent living. These formerly interred
individuals should be used at all levels of program design and implementation,
especially in the provision of direct services and advocacy. A consumer
group of nursing home residents can also be an important vehicle for obtaining
consumer participation and involvement.
A common problem observed during the research for this monograph was
that centers did not keep accurate statistics on how many consumers left
nursing homes or remained in the community as a result of center programs.
Centers commonly stake claims for additional funding upon cost savings
of community versus institutional living and should bolster these claims
with accurate documentation.
Administration and staff of independent living centers must have a strong
commitment to independent living philosophy and must guard vigilantly
against the tendency to move toward a medical model program. Resistance
of officials in the DD/MR system is a major barrier to the involvement
of centers in deinstitutionalization. Services for people leaving state
hospitals are still based upon a medical model-based philosophy with an
over-emphasis on case management. Many centers have stayed away from provision
of highly concentrated service and the necessity of meeting medical requirements,
such as a staff nurse, because these demands are believed to be antithetical
to the philosophy of independent living.
Assisting people with the most significant disabilities, especially those
with no other options, to live in the community should be the mission
of centers. They should not use stiff medical and administrative requirements
as an excuse not to serve people with severe cognitive disabilities but
should advocate for programs that are less medical and more consumer controlled.
Centers often identify attitudes of medical professionals and lack of
outreach as barriers to successful transition out of institutional settings.
Most centers are not well known among hospital personnel, and many referrals
are obtained after the individual has already been placed in a nursing
home. Since the medical community is still not familiar with independent
living philosophy, centers need to step up efforts to educate the medical
establishment and related service entities
Centers should recognize that administration of a formalized transition
program is extremely challenging and should seek out additional administrative
resources and financial expertise before project initiation. Centers should
obtain in-depth information about administrative requirements from the
sponsoring agency and should visit similar programs to observe record
keeping systems. The decision to undertake a formalized, complex transition
program can change the very essence of a center, and board members, staff,
and consumers should make this decision with as much foreknowledge and
with as much commitment as possible.
In Conclusion
In sum, the most important ingredient for any successful transition program
is a gut-level understanding of independent living philosophy and the
basic belief that everyone, irrespective of disability or degree of disability,
has the right to live in the community. Centers must understand that the
real obstacles are bigotry and lack of creativity, not the disabilities
or characteristics of individuals denied the right to self-determination
or consigned to institutional living.
A consumer PAS program and accessible, affordable housing are key necessary
ingredients. Staff must learn to be good "scroungers," knowing
where to locate a used refrigerator, couch, or kitchen appliances. A slush
fund that can be used to purchase household items is also a plus. Finally,
a willingness to be a strong advocate, even at the cost of incurring hostility
or anger, will make a center more successful.
An effective center will allow consumers the freedom to succeed or fail;
this is the price of true independence.
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