|
|
| |
|
Upcoming Events |
November 10-12, 2008
November 12-14, 2008
November 13-16, 2008
March 6-7, 2009
|
|
|
Ikigai Newsletter
"That which makes life worth living..." |
November 2008 |
Dear Shelley,
As the holidays approach, it is a time for
us all to reflect on the things that make
our lives worth living: friends, family,
meaningful work, giving to others. It is a
time to be thankful for the experiences and
people that have brought a richness to our
lives and a time to look with hope to the
future. For without hope, nothing is
possible.
In this edition of Ikigai,
Janet Williams writes about the promise
of a better future for people living
with brain injury and other cognitive
disabilities. The Culture Change
movement presents opportunities and
options for people with cognitive
disabilities that we had not imagined
before. The change occurring in
long-term care for this population of
individuals is not change for the sake
of change; it is change for the sake of
a better quality of life and enhanced
well-being.
This time of year can be both rewarding
and challenging. But if we focus on the
cup being half-full rather than
half-empty, we can view the broader
concept of change with the same eyes
that we see the changing of the calendar
year: with optimism, excitement and the
determination to make great things
happen.
David Seaton
President, Seaton Foundation
|
|
|
It's
About People...Not Programs
by Janet Williams, MSW, PhD
There is a
revolution occurring in
long-term care for people living
with brain injuries and other
cognitive disabilities.
Individuals no longer have to go
into a one-size-fits-all
program. Instead, they are
choosing to live at home, and
services are being tailored to
address their physical,
cognitive and social needs
within their own communities.
Take Joe, for instance. After
experiencing a brain injury, Joe
lived for a time in a typical
group home. He struggled under
the home's myriad rules,
regulations and policies and
became depressed. After being
"kicked out" of the group home,
Joe sought out the services of a
local agency to help him become
more self-sufficient. With the
support of his parents and
available local resources, he
was able to start making his own
decisions and regain some
control over his own life. Today
Joe is happy and rediscovering
the joy and meaning in his life.
He knows that he may always need
some form of support, and when
he needs a helping hand, he
knows where to find it.
The revolution changes how we
think about transition to the
community for people with brain
injuries. Transition is the car
ride home. It is not learning
certain skills in one setting to
prove you can perform them at
home. It is getting home to
learn skills where you will use
them.
Belief about intensity of
services also shifts. Rather
than taking the view that
someone can only go home when
she needs fewer services, the
person goes home as soon as
possible. If a person can't be
left alone, 24-hour support is
provided at home. As a person
masters certain daily skills and
reaches set goals, such as going
to the grocery store, working
out at the gym or attending
community college, the intensity
of assistance, prompting and
supervision is decreased. When
therapists are able to observe
an individual in his or her own
environment, they can identify
potential obstacles and help
pave the road to success. What
better place to learn living
skills than within one's own
home and community? Progress, or
lack thereof, then becomes very
apparent to both the person and
the therapist.
The enormous advantages to this
approach are clear. Assessment
is ongoing by those who are in
the best position to see how the
person changes over time,
including the person being
supported. Because goals are
established based on the
environment, they don't have to
be set up in an artificial way.
For example, if someone needs to
prepare meals, working within a
budget to purchase the food and
making the trip to the grocery
store have more meaning. And
while the up-front costs of
24-hour support with intense
therapy may be significant,
having the ability to decrease
services as soon as it's clear
they're no longer needed
minimizes the cost over time.
Community CLUES after brain
injury offers a framework for
tailoring services to a person
with a brain injury in their own
home and community. These
guidelines can also be
instructive for those providing
services to individuals with
other cognitive disabilities.
When we create
positive environments with
control and choice,
listen and develop
goals based on what the person
tells us, not on what
assessments reveal, the person
begins to gain confidence to
master his life at home after
brain injury. Additionally,
care providers who
understand what is
happening from the perspective
of the person being supported
and expect that
he will experience pitfalls,
surprises and successes during
the course of daily life, show
an empathy that goes a long way
in building the trust that is
needed for him to be successful.
And finally, services that
support
individuals in making the best
use of their family supports
during the journey of brain
injury launches them off on the
marathon with the skills they
will need to traverse the
terrain ahead.
Janet
Williams has worked in the field
of brain injury for 26 years.
She started communityworks inc,
in Kansas and Missouri, in 1991.
Janet and her colleagues
currently assist 312 people to
live, work and play in the
community. Three years ago she
started Minds Matter LLC, to
provide training and assistance
to other professionals looking
to develop community supports.
Please visit
www.communityworksinc.com
for more information.
|
|
New National Center for Parents with
Disabilities
Berkeley, CA -- October 21, 2008. A new
National Center for Parents with
Disabilities and their Families has been
established in Berkeley, California
under the auspices of Through the
Looking Glass, a non-profit organization
founded in 1982. The Center will
oversee several national research
studies concerning parents with
disabilities and their families, as well
as provide consultations, trainings and
publications to parents, family members
and professionals.
The research and resources of the Center
will address the nearly 9 million U.S.
parents with disabilities - 15% of all
American families. Parents with
disabilities include mothers and fathers
in all disability categories - such as
parents with physical disabilities, deaf
parents, blind parents, parents with
psychiatric or cognitive disabilities.
The Center is funded by a $500,000 per
year federal grant for three years from
the Washington, DC-based National
Institute on Disability and
Rehabilitation Research (NIDRR), U.S.
Department of Education.
The new Center will focus its research
and resource activities on four critical
areas that impact parents with
disabilities: custody, family roles and
personal assistance; paratransit; and,
intervention with parents with cognitive
disabilities and their children. One of
the notable activities planned over the
next three years is a scholarship
program for high school seniors and
college students whose parents have
disabilities. The Center will be
staffed by nationally recognized experts
regarding parents with disabilities,
most of whom have personal or family
experience with disability or deafness.
More information about the Center and
Through the Looking Glass is available
at the organization's website
(<http://www.lookingglass.org>), through
two toll-free numbers, 800-644-2666
(voice), 800-804-1616 (TDD/TTY), or by
email at tlg@lookingglass.org
Contact: Dr. Paul Preston
510-848-1112, x104
Email: ppreston@lookingglass.org
Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710
(800) 644-2666 (voice)
(800) 804-1616 (TDD/TTY)
FAX: (510) 848-4445
tlg@lookingglass.org
www.lookingglass.org
|
|
| |
|
