A University Center for Excellence in
Disabilities Education, Research and Service
When Barbara Romain was diagnosed
with a retinal degenerative disease in 1984, she'd been painting in oils for several years. She says, "As
I became legally blind, I seriously questioned my ability to continue painting.
I slowly transformed my thinking and techniques to incorporate my physical
limitation as an integral part of my work.
As a result, I am continually
exploring the boundaries of taste and perception, asking what does a painting
need to look like? Physical movements of my body must replace the precision of
my eyes as the vehicle for placing marks. Improvisation in the moment has been
inspired by collaborations with experimental theater artists, jazz musicians,
and poets.
The National Arts and Disability
Center (NADC) at Tarjan is about creating opportunities for artists such as
Barbara to continue their professional development. As part of its California
Arts and Technical Assistance grants program, the NADC funded her to attend the
VSA Arts International exhibit. She has since been selected as a Teaching Artist
for VSA and is grateful to the NADC and the California Arts Council for their
support.
"The Tarjan Center is about taking clinical expertise and
extending out to the disability community. The Tarjan Center gives the interns a
broader view of the disability world, from an interdisciplinary viewpoint - not
simply a focus on the physical issue."
Eileen Fowler, PhD, PT, Director of Research and
Education,
UCLA/Orthopaedic Hospital
Center for Cerebral Palsy and Tarjan Center
The strength of a society springs directly from its ability
to realize and engage the unique potential of each individual. A truly healthy
community supports the unlimited possibilities in all its
members.
The Tarjan Center at UCLA supports possibilities across the lifespan in a variety of ways.
"We have a wonderful opportunity to provide education to
students,
health care
professionals, parents and other caregivers to benefit individuals
with disabilities of all
ages."
Joan Earle Hahn, Assistant Adjunct Professor,
UCLA
School of Nursing and Tarjan Center
Who We
Are
National service is one of our
countryÕs greatest vehicles for social change, linking citizens to local
community improvement efforts through programs like
Americorps.
Oscar Reyes, project director of
the UECC Americorps program at the University of California, Riverside (UCR),
happened to meet TarjanÕs Director of the Alliance for Inclusion Advancement,
Karen Leventhal, through an Americorps Alumni event. It seems that both had been
part of this national domestic volunteer program, although at different
times.
It was a fortuitous
encounter.
The Americorps volunteer group at
UCR tutors at local elementary, middle and high schools and also helps with
community beautification programs, such as graffiti removal. Oscar was looking
to recruit students from across the campus to participate, and he was especially
interested in opening the program to those with
disabilities.
Enter the Tarjan Center, which
helped to facilitate a meeting between him and the UCR Student Special Services
Office. That, in turn, led to the office running an ad in the Special Services
newsletter, which led to increased student awareness and interest. Oscar hopes
to engage some students with disabilities to volunteer this
spring.
"The Tarjan Center was very helpful
in setting up our meeting and answering questions," Oscar notes. "And they
continue to be available." "I'm glad I found the Tarjan Center," he enthuses.
"It's a great resource."
As a result of this collaboration,
students with disabilities at UCR will be able to enjoy the experience and
satisfaction of volunteerism.
"University Centers of Excellence have a role in
providing direct service and making others aware of the special needs and
circumstances of those with developmental disabilities, but our main mandate is
to advocate at the program level, facilitate the sharing of knowledge, and
effect systems change. Our goal is to really improve the lives of individuals
with disabilities."
Andrew Russell, MD, Co-Director, Tarjan
Center
A University Center for Excellence in Disabilities
Education, Research and Service
The Tarjan Center is part of a national network of
federally-designated University Centers for Excellence in Developmental
Disabilities (UCEDDs).
University Centers for Excellence were first authorized by
President John F. Kennedy in 1963. Their purpose is to promote independence,
productivity, and full inclusion of people with developmental disabilities in
their communities. Today, there are 64 UCEDDs with at least one in every state
and territory in the United States.
Founded in 1969, the Tarjan Center is unique in the national
network. It is the only program based within a Department of Psychiatry (the
Jane & Terry Semel Institute for Neuroscience and Human Behavior). Our
founder, Dr. George Tarjan, was an internationally-recognized expert in the
field of developmental disabilities who pioneered clinical services, the
training of personnel, and the establishment of a research center dedicated to
the field of mental retardation.
Today, the Tarjan Center is a bridge connecting the knowledge, expertise and resources of the university to persons with disabilities and the service delivery systems of the community. Our mission is to provide leadership in education, research and innovative practices to support the quality of life and inclusion of all people with disabilities and their families. We do this through:
Our faculty and staff represent a variety of academic and
research disciplines, but they share a common commitment to and interest in
disabilities.
Our Core Program
The Tarjan Center accomplishes its mission across the
lifespan through three overarching and interconnected core areas: Arts, Health
& Well-Being, and Social & Civic Engagement.
"We're really about social change, using training,
research and information
to effect overall change in the long
run."
Bethany Stark, MA, Parent Coordinator, Tarjan
Center
Arts
Pamela Walker is a writer, arts
administrator and performer with a disability - and spent the first part of her
life hearing the words "No, you can't."
So she set out to make "Yes, I
can," a reality. Along the way, she connected with the National Arts and
Disability Center (NADC). And that has made a big difference in her
life.
Pamela first met NADC Director
Olivia Raynor when both were speakers at an event about art and disability. That
was more than 10 years ago, and since that time, Pamela's participated in many
NADC events and worked as a consultant for the center. It has been a mutually
beneficial relationship.
Over the years, she notes that the
NADC has been "a valuable source of information and networking." Her work on
grant panels, for example, has allowed her to exchange ideas with people around
the nation.
The NADC also gave her technical
assistance in the form of an Arts and Accessibility mini-grant to acquire
voice-activated software. That enabled her to write her book "Moving Over The
Edge - Artists with Disabilities Take the Leap." That, in turn, inspires other artists.
"The greatest impact of the NADC is
not tangible, but in the validation of my role, my right to be an artist and
acknowledgement that it's a viable career choice," she says. "I get taken
seriously as an artist - that's hard enough to achieve in general, but worse
when you have a disability."
"Without the NADC," she continues,
"I wouldn't have been able to connect with the number of people I have." That's
the Tarjan idea - connect people and watch those connections make a
difference.
"We help bridge the gap between research and practice in
mental health for people with developmental disabilities; create new
opportunities for inclusion in the arts; and establish more effective
partnerships with the community to improve the quality of
life."
Olivia Raynor, Co-Director Tarjan Center, Director
National Arts and Disability Center
National Arts and Disability
Center
The National Arts and Disability Center (NADC) at the Tarjan
Center is the only one of its kind in the nation. It is a unique resource - an
information and training center dedicated to the full inclusion of artists and
audiences with disabilities in all facets of the arts. Through our Web site, we
publish resource directories and training materials, as well as showcase the
talent of individuals with disabilities.
Through the NADC, we help advance the professional
development and employment of artists with disabilities. We also provide
guidance and education to arts venues on how to remove barriers that prevent
people with disabilities from taking part in the arts community.
In partnership with the National Endowment for the Arts and
Very Special Arts (VSA), NADC administers The Statewide Forums on Careers in the
Arts initiative, helping individual states establish partnerships between the
state arts agencies, VSA arts affiliates, artists with disabilities and
vocational, education, and rehabilitation professionals to advance employment in
the arts. To date, 20 states have been supported involving thousands of
participants.
Annually, the NADC partners with the State Council on
Developmental Disabilities to hold an Art Poster Contest for artists with
disabilities to draw attention to their talent and capabilities. Designs around
themes such as "Hire Value," "Believe and Achieve," and "Yes, I Can" have
resulted in hundreds of submissions depicting people with developmental
disabilities actively involved in their communities. The posters are distributed
throughout the state
"As a pre-medical student, I began my work with the
center hoping to gain more experience with patients. I have come to understand
that a person with a disability may require medical attention, but that his or
her psychological and social issues can run much deeper....There is no doubt in
my mind that my experiences will help me to become a more effective
physician."
Nader Khajehnajafi, UCLA
Student
Health and
Well-Being
Kids on bikes are a universal image
that calls to mind childhood fun.
But for children with cerebral
palsy the simple act of riding a bike can be major challenge. Children with
cerebral palsy typically have muscle weakness and lower fitness than their
non-disabled peers. Recent research indicates that strength can improve with
exercise, and cycling is an exercise that focuses on leg strength and overall
fitness.
Enter the PEDALS project (Pediatric
Endurance And Limb Strengthening in Children with Cerebral Palsy) of the Tarjan
Center in association with the UCLA/Orthopaedic Hospital Center for Cerebral
Palsy, and the Department of Biokinesiology and Physical Therapy.
Funded by the Foundation for
Physical Therapy, the joint UCLA/USC study is headed by Tarjan faculty member Dr. Eileen Fowler. The study's purpose
is to investigate the effect of a stationary cycling intervention on strength
and function.
Children age 7-18 years are
randomly assigned to either a cycling or a non-cycling (control) group. Both
groups receive two evaluation sessions consisting of strength testing,
assessment of functional ability, and questionnaires to assess health-related
quality of life. Children assigned to the intervention group also receive 30
sessions of a stationary cycling intervention from a physical therapist over a
three-month period.
In conducting her study, Dr. Fowler
has found that while children in the cycling group may improve limb strength and
endurance during the course of the study, "The children in the control group do
not have an opportunity to benefit, and those in the cycling group tend to
gradually lose strength and fitness when the study is
over."
To keep the kids cycling and extend
the effects of her work beyond the actual research phase, she and her team did
some fundraising to enable all the children enrolled in the study to get a free
bike. This encourages them to keep cycling and provides them with an opportunity to participate in a fun recreational activity
with friends and family.
"It's become a wonderful community
outreach program," Dr. Fowler notes. "I never anticipated the emotional impact
on the parents when they saw their child ride a bicycle for the very first
time."
It's also a perfect example of the
multi-faceted Tarjan Center in action.
Mental
Health
Our mental health programs address the unique and often unmet
mental health needs of individuals with disabilities, helping sustain and
support them with skilled practitioners who can provide continuity of care. We
recognize the shortage of mental health professionals with expertise in
developmental disabilities, and through our training and continuing medical
education programs address this need for increased cross-training. We
disseminate findings from the latest research and clinical best practices in
mental health to consumers and their families.
Clinical and Community-Based
Services
We support clinics in autism, Down syndrome, early
intervention, mental health for individuals with developmental disabilities,
Prader-Willi Syndrome, Fetal Alcohol Syndrome, and Williams Syndrome. We also
sponsor a motion analysis laboratory, and an interdisciplinary clinic focusing
on the medical management of movement disorders in children and adults with
cerebral palsy and related movement conditions.
Research
One of the Tarjan Center's greatest strengths is our research
faculty who are extending the knowledge of human development in many areas
related to disabilities.
Faculty interests range from the mental and physical health
needs of persons with developmental disabilities, to the study of movement
disorders due to developmental and genetic disabilities, to the impact of
prenatal alcohol exposure, and outcomes of preventive health
interventions.
Education
We are training the next generation of professionals in
health care, education and other allied fields through a variety of programs,
such as increasing awareness of newer medical treatments for cerebral palsy,
developing a groundbreaking, integrated approach to education about Fetal
Alcohol Exposure, and supporting and educating students in clinical
internships.
Other initiatives are bringing the field of Disability Studies to undergraduate education at UCLA and Pathway, a post-secondary education program for students with intellectual disabilities at UCLA Extension.
Social and
Civic Engagement
Community Service and
Volunteerism
The Tarjan Center Service Inclusion Project (TCSIP) - in
partnership with agencies such as the California Service Corps, the Corporation
for National and Community Service, and the National Service Inclusion Project -
facilitates regional and state partnerships that encourage the inclusion of
people with disabilities in service and volunteerism. TCSIP also provides
technical assistance and training to service organizations.
The Alliance for Inclusion Advancement is a three-state
collaborative (California, Florida and Hawaii) whose goal is to increase the
number of youth, adults and veterans with disabilities in community service
opportunities that address local needs. This innovative approach utilizes
University Centers for Excellence in Developmental Disabilities, the Hands On
Network and the field of national service as a team to equip volunteers with
disabilities to take a greater role in their community.
The Spencer-Russell Mini-Grant program - named in memory of
two leaders in the disability field - provides support to community efforts to
engage people with disabilities in service. Nonprofit organizations such as
national service and volunteer programs, disability organizations, educational
institutions, state agencies, and faith-based entities are eligible to
apply.
Conference, Training and
Information Sharing
An important part of the Tarjan Center is to share and
disseminate information. We accomplish this through trainings, conferences and
special programs. We also focus on contributing to public policy change through
program evaluation, demonstration projects and surveys. For example, we recently
collaborated with the Screen Actors Guild to conduct the first national study of
employment among performers with disabilities in the entertainment
industry.
The annual Margaret Jones Professional Conference and Family
Forum provides an opportunity for professionals and families to learn about the
most pressing issues related to the treatment of individuals with cerebral
palsy.
In collaboration with Community Housing Resources, Inc.
(CHRI), the Tarjan Center provides training for families, disability
organizations, case workers and service providers on a variety of
housing-related subjects, including government rental assistance and housing
options for persons with developmental disabilities.
On the undergraduate level, we are helping develop a
Disability Studies minor, integrating research and scholarship to critically
examine disability in terms of social, political, economic and cultural factors
that define impairment.
"The Tarjan Center provides an umbrella under which we
can all function according to our interests. It's a place where people who are
interested in developmental disabilities come to share their experiences, train
people and provide advocacy and evidence-based treatment. It's both
multidisciplinary and multifaceted."
Mary O'Connor, PhD, Training Coordinator, Tarjan
Center
Tarjan Advisory
Committee
The Tarjan Advisory Committee provides advice and assistance
to the Center on program objectives, project development and suggestions for new
initiatives. A key function of the Tarjan Center is to disseminate knowledge to
the community in areas of mutual interest.
In turn, we rely on feedback from the community to help inform our work.
We are actively engaged with consumers and seek to identify and mentor potential
leaders to participate on our Tarjan Advisory Committee.
The Committee is composed of key stakeholders, including a
majority of persons with disabilities, family members, representatives of
community agencies, and our Federal partners.
Funding
Sources
Core support for the Tarjan Center comes from the
Administration on Developmental Disabilities, US Department of Health and Human
Services. In addition, we are supported by federal and state contracts and
grants, as well as private foundations and donations.
Contact
Information
300 UCLA Medical Plaza, Suite 3302
Los Angeles, California 90095-6967
310/825-0170
tarjancenter.ucla.edu