Hi Harriet,
It's great to hear that you have an advocacy support position in
Australia-- in the U.S., getting out of a NH isn't typically facilitated
unless there is a strong underground disability activism community
infiltrating or you live in a systems change state of which there a
handful. Over the past 3 years, there's been a consortium of players
(Centers for Independent Living, UIC Disability Studies program) in
Illinois who have been aggressively working on
deinstitutionalization/community reintegration. We got a grant to do
action research and develop the Social Action Group (SAG)-- a program that
supports people with disabilities who are in NH and want to transition out,
are in the transition now, or who have recently moved out to the
community. Based largely on content and needs identified by disabled
participants, a 6 week intensive program was created, we've just completed
10 rounds of the group, and have had over 160 disabled people participating
in the project overall.
Although SELF advocacy is important and highly emphasized by the CILs who
help coordinate the actual transition (via a state waiver program), we've
focused in on collective activism (and the history and strength of the
disability activism as a movement), social networking, and critical
consciousness/community building a lot in the SAG program. We use a lot of
first hand narratives, writings, videos, art, and learning activities from
within disability studies and disability activism-- some of it is available
publicly, others we've created. There's a lot of social learning and
trading of strategies, strengths, and resources that occurs almost
instantly when people come together and realize they aren't in this alone
and other people are experiencing the same oppression. Something about
focusing at the levels of collective action and disability critical
consciousness building seems to really resonate with people and is really
transforming, for all of us.
A lot of people in U.S. nursing homes, particularly Medicaid/publicly
subsidized NH, are experiencing violence, abuse, neglect, mistreatment, and
basic violations of human rights and dignity-- just teaching them self
advocacy doesn't seem to be enough and can actually backfire at times in
terms of punishment for speaking up for rights or resisting in NHs-- there
are very real consequences here, including being put into a psychiatric
facility, medication mismanagement, compromised care, etc. Being able to
form an advocacy network of people and organizations around you, and seeing
yourself as a part of a bigger activism and community movement, seems to be
something that participants recommend as mentors to people new to the
process, and really value in their own lives. So, we tap into that and do a
lot of programming there.
We see it as kind of like taking Disability Studies as a field of study,
and packaging it in a way that can be shared with the disability community
that does not typically get access to this info, in this case to people who
are living in isolated and oppressive living conditions of nursing
homes. In addition to the 6 week small group intensive sessions
facilitated by disabled activists and community members, we've combined
this with life story narrative writing and, information technology access &
use training and peer mentoring. Surrounding all of it, we are sponsoring
public Town Halls where disabled people going through this transition voice
their issues and experiences and community members and policy makers get to
hear these and respond-- a way to try to take it to systems level change as
much as possible. All this coupled with the strong activism by the CILs
that has been ongoing for decades.
I'd love to talk with you more, and to other people involved in this type
of systems change, to share materials and ideas. Also, many of the
participants in SAG are online and have email -- don't know if it's
possible-- perhaps there's a way to do some participant networking
internationally?
Harriet, a question to you--is Australia funding the advocacy
positions? How are these being done or coordinated?
Joy
Joy Hammel, University of Illinois at Chicago,
Joint Doctoral Program in Disability Studies, Depts. of Occupational
Therapy & Disability and Human Development,
1919 W. Taylor St., Rm 311, Chicago, IL 60612, 312-996-3513; 312-413-0256
(fax); [log in to unmask]
At 01:40 AM 5/13/2004, you wrote:
>Dear all
>
>
>I have just started a new position as a community development
>worker/advocacy support worker for the residents of a nursing home. These
>residents have a variety of disabilities, primarily physical, and vary in
>ages from 25-85.
>
>
>Due to various legal, political and personal battles (amongst managers,
>owners, and funders) these individuals are being relocated to another
>premises as a temporary arrangement before they will move on to more
>appropriate alternatives (ie more inclusive and independent living spaces).
>
>
> >From what i understand, my role is to develop their skills of self advocacy
>which includes keeping them informed about their options to enable them to
>make choices about their lives. I am hoping that one outcome will be in
>establishing a resident's group which will enable residents to have more of
>a proactive role in what happens during this difficult time. A major
>barrier is the impact of institutionalisation and these people neither know
>nor want anything different.
>
>
>I have a vision for what i would like to see happen yet making it a reality
>is an ongoing challenge. Therefore I would welcome any advice, comments or
>suggestions about where to go from here.
>
>
>Many thanks!
>
>Harriet Radermacher
>Melbourne, Australia
>
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