Flight to Freedom: Introducing Institutionalized People with Disabilities
to Community Living Alternatives
2002
by Steve Brown
Introduction
Since their inception, centers for independent living (CILs) have targeted
getting people out of nursing homes and other institutions into community
living settings. ADAPT paved the way for concentrating on this effort
in 1990, when it changed the words behind its acronym from American Disabled
for Accessible Public Transit to American Disabled for Attendant Programs
Today.
The Supreme Court ruled on this subject in a case brought to its attention
in the late 1990s (Olmstead v. L. C. et al, 1999 WL 407380 (U.S.). Two
Georgia women with disabilities (mental retardation and mental illness)
claimed living in a nursing home deprived them of their rights under the
Americans with Disabilities Act (ADA) to live in an integrated community
setting.
The plaintiffs—known as L.C. and E.W.—argued that they had
a right to receive services in a community-based setting under Title II
of the ADA. The law requires public entities to provide their services
“in the most integrated setting appropriate to the needs of qualified
individuals with disabilities... [that] enables individuals with disabilities
to interact with non-disabled persons to the fullest extent possible.”
The state argued that L.C. and E.W. were placed in state-run institutions
to obtain needed services. Physicians for the women disagreed, stating
they could receive appropriate services while living in the community.
The Court ruled in favor of L.C. and E.W., affirming that where individuals
live must be appropriate to their needs and can include home and community-based
arrangements. The Court noted that institutionalizing a person with a
disability who wants to live in the community and can benefit from it
is discriminatory because it severely diminishes the individual's ability
to interact with family and friends, work and make a life for him- or
herself.
The Court laid out the “roadmap” that states must follow
to develop their integration plans. To comply with the Olmstead ruling,
states must show they have comprehensive and effective plans for placing
qualified individuals with disabilities in less restrictive settings.
Beyond that, they must show that waiting lists move at a reasonable pace
and are not influenced by attempts to keep institutions fully populated.
In June 2001, President George W. Bush signed an executive order saying
that, “the Supreme Court construed Title II of the ADA (Americans
With Disabilities Act) to require states to place qualified individuals
with mental disabilities in community settings, rather than in institutions,
whenever treatment professionals determine that such placement is appropriate,
the affected persons do not oppose such placement, and the state can reasonably
accommodate the placement, taking into account the resources available
to the state and the needs of others with disabilities.”
This paved the way for states to do exactly what the Supreme Court ruled
they should.
The Plan
Because the Supreme Court case originated from a complaint in the state
of Georgia, it is fitting that this state responded to the Supreme Court's
decision. The Georgia Department of Community Health Division of Medical
Assistance, Aging & Community Services (DCH) and disABILITY LINK each
joined separate groups to apply for funding to facilitate nursing home
to community transitions. The federal government awarded separate grants
to the two entities which eventually decided to work together toward their
similar goals. disABILITY LINK and DCH began their respective Nursing
Facility Transitions Grants in 2001. They collaborated to provide outreach
and support to people residing in nursing homes in their transitions to
community-integrated living settings. They also worked to assure that
these individuals had the support necessary to sustain long-term residence
and participation in the community.
Implementation
Atlanta's disABILITY LINK is the fiscal agent for the grant. The CIL
hosts the transition outreach coordinator and contracts with five other
CILs to implement the grant. Executive Director Rebecca Ramage-Tuttle
refers to this program as Flight to Freedom, designed to “liberate”
people from nursing homes.
According to Ramage-Tuttle, the Georgia Statewide Independent Living
Council (SILC) spearheaded the grant effort. SILC Executive Director Patricia
Puckett serves on the project's steering committee that meets quarterly
to provide guidance and support to the transition outreach coordinator
and assists with the development of the grant process.
The project's goals are to:
- identify and implement policy changes needed to bring about improvements
in the long-term care system;
- build the capacity of providers of nursing home services in Georgia
to offer community support services; and
- increase the number of individuals who transition from long-term
care nursing facilities to appropriate community- integrated living
arrangements.
The State of Georgia has the added goal of increasing the number of trained,
reliable, and quality community service workers.
The grant activities focus on 18 rural and underserved counties where
state CILs operate. Over the life of the grant, the organizations hope
to relocate 35 people presently residing in nursing homes to the community.
Success
To this point in time, Flight to Freedom has achieved a number of successes
including:
- hiring a transition outreach coordinator;
- establishing a task force comprised of consumers and providers to
identify;
- prioritizing and developing strategies to overcome institutional
bias in state policy and to work on waiver issues;
- placing transition team leaders in six regions of the state and working
directly with persons in facilities who have expressed a desire to leave;
- supporting the participation of consumers in transition planning,
providing information and training to all consumers and staff, developing
resource materials and evaluating the project; and,
- conducting a comprehensive community resource mapping project and
a work force development pilot project in 18 counties to identify barriers
and opportunities for increased community services and direct care workers.
It's frequently asked how much it costs to liberate people from institutions
compared to the expense of maintaining people in nursing homes. To this
point, the project has not established reliable figures on that. But the
project team believes that even if costs were higher to achieve community
living, it would not negate the liberation of 19 people from nursing homes
during the project's initial year. Their potential as productive community
members is invaluable.
Ramage-Tuttle believes that perhaps the most unique aspect of Flight
to Freedom is that nursing homes are actually working to liberate some
of their own residents. She also praises the collaboration with a diverse
workgroup consisting of consumers, advocates, state agencies and providers.
It deserves note, she says, that two of Georgia's three largest nursing
home providers Golden Age and UHS Pruitt are part of the group. These
characteristics, Ramage-Tuttle contends, make this program a model for
the rest of country.
By demonstrating that providers of nursing home services can encourage
community placement, this project will establish a lasting legacy and
true systems change. In essence, the project seeks to demonstrate that
effective systems change can be a “win-win” situation for
both consumers and providers.
Contact information
disABILITY LINK \
Rebecca Ramage-Tuttle
Executive Director
755 Commerce Drive, Suite 415
Decatur, GA 30030
404.687.8890 (V)
404.687.9175 (TTY)
800.239.2507 (V/TTY)
404.687.8298 (FAX)
info@disabilitylink.org
http://www.disabilitylink.org
Linda Kendall
Project Director
GA Nursing Facility Transitions Grant: State Program
828.259.9834 (V)
lhkendall@mindspring.com
www.hcbs.org/systems_change/GEORGIA_ilp.htm
Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/
About the Author
Steven E. Brown is currently a Resident Scholar
at the Center on Disability Studies, University of Hawaii at Manoa. Brown,
founder, Institute on Disability Culture (IDC), earned a doctorate in
history from the University of Oklahoma. He directed an independent living
center in Oklahoma, organized numerous community coalitions, and served
as training director at the World Institute on Disability Research and
Training Center on Public Policy in Independent Living. He founded the
not-for-profit Institute on Disability Culture with his wife, Lillian
Gonzales Brown, in 1994. Since then he has become an internationally sought
speaker, trainer, and writer.
Brown's publications include dozens of articles and the books Independent
Living: Theory and Practice, which has been translated into several
languages; Investigating a Culture of Disability: Final
Report, the result of a prestigious Switzer Fellowship from the
National Institute on Disability Rehabilitation and Research of the Department
of Education, the first funding of its type for research into the field
of Disability Culture; A Celebration of Diversity:
an Annotated Bibliography about Disability Culture, Second Edition;
and Celebrating Passion, Relentlessness, and Vision:
the Manifesto Editorials. An award-winning poet, Brown has published
five books of poetry, Dragonflies in Paradise: An Activist's
Partial Poetic Autobiography; The Goddess Approaches
Fifty: Poems; Love into Forever: a Tribute to
Martyrs, Heroes, Friends, and Colleagues; Pain,
Plain--and Fancy Rappings: Poetry from the Disability Culture;
and Voyages: Life Journeys.
In recent years, Brown has conducted writing workshops and residencies
with groups of all ages, especially with middle and elementary school
students. He has written a children's biography about disability rights
pioneer Ed Roberts, distributed a monthly online newsletter and continued
to publish articles about disability culture and disability rights in
a variety of publications. He has conducted trainings throughout the United
States and Europe on a variety of disability related subjects.
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