Brief
Historical Perspective of the
CDL and the UCEDD Network
The National network of University Centers for Excellence in
Developmental Disabilities Education, Research, and Service (UCEDD; Formerly
called University Affiliated Programs) were the brainchild of President John F.
Kennedy. President Kennedy
appointed in 1962 several prominent researchers and clinicians to the
President’s Panel on Mental Retardation.
This
panel’s charge was to propose the development of a nation-wide network of
University-based facilities whose mission would be to train professionals and
improve the care of Americans with Mental Retardation.
The impetus behind President Kennedy’s preoccupation for the quality of
care and scientific understanding of the causes of mental retardation was his
sister who had mental retardation.
The President’s Panel on Mental Retardation (now called
President's Committee on Intellectual Disabilities) was chaired by Dr. George
Tarjan and published its recommendations in a 1962 report to the President.
Their recommendations highlighted the need for interdisciplinary training of
professionals and paraprofessionals working with individuals with mental
retardation, the need to set standards of care and established best-practice in
providing services and supports for individuals with mental retardation and
their families, the importance of advancing the scientific understanding of this
condition, as well as the need to establish a coordinated effort between
universities, state, and local agencies to survey the personnel needs in the
field and provide a concerted response to the identified needs. The 1962 Report
from the President’s Panel on Mental Retardation led to the 88th
U.S. Congress passing of Public Law 88-164 “Mental Retardation Facilities
& Construction Act.” This was the first legislation enacted that later led
to the construction of the then called, University Affiliated Facilities.
PL 88-164 MR Facilities Act - specified that the Federal government authorized grants to
assist in the construction of public or nonprofit clinical facilities associated
with a university that would both provide services and aid in clinical training
of professionals working with individuals with mental retardation.
Division
for Disorders of Development and Learning
(now known as the Center for Development and Learning)
Doctor Harrie Chamberlin, Pediatrician, was appointed to the
President’s Panel on Mental Retardation and one of the signatories on the
pivotal 1963 legislation leading to the creation of the UAF, now UCEDD, network.
No construction began until amendments were made to PL 88-164 and
eventually led to Congress passing an amended version as PL 91-517 “MR
Facilities Construction Act – Amendments Construction,” in 1970. The first
of a series of 19 University Affiliated Facilities (UAF) opened in the early
1970s. The North Carolina UAF
(Division of Disorders of Development and Learning; DDDL) began operating in
1972 at the University of North Carolina at Chapel Hill under the leadership of
Harrie Chamberlin, MD. The DDDL had
originally opened in 1962 as a Developmental Evaluation Center (DEC), the second
such clinic in North Carolina, under the directorship of Dr. Chamberlin. With the impetus of the UAF funding the DDDL transitioned
from its DEC mission to that of one of the first UAFs.
Dr. Chamberlin retired from the directorship of the DDDL in 1984 and
was succeeded by Dr. Melvin D. Levine, Pediatrician.
Dr. Levine restructured the DDDL and renamed the UAP the Clinical Center
for the Study of Development and Learning (CDL).
The CDL has continued its growth and achievements under the leadership of
Dr. Levine. Currently, the CDL has a faculty of approximately 40 faculty and
support staff. The
interdisciplinary faculty includes: audiology, speech-language,
education, nursing, nutrition, occupational therapy, pediatrics, physical
therapy, psychiatry, psychology, and social work.
The Developmental Disabilities Assistance and Bill of Rights Act (DD
Act) was amended several times between 1970 and 2000.
On 30 October 2000, President William Jefferson Clinton signed the
re-authorization of the DD Act PL 106-402.
In his statement, President Clinton highlighted the importance of this
legislation in bringing about: positive system change, building the capacity of local and state service
and support delivery, promoting self-determination amongst individuals with
developmental disabilities, and placing emphasis on outcome measures and
accountability requirements based on performance of the UCEDDs. It was in
this re-authorization of the DD Act by President Clinton that the UAPs became known as
University Centers for Excellence in Developmental Disabilities
Education, Research, and Service (UCEDD).
Marv Fifield (1995) identified three main paradigm shifts within the
UCEDD network's history:
1963
– 1974:
Ø Make institutions safe
Ø
Train professionals from various disciplines
Ø
Use the expertise found in universities
Ø
Provide interdisciplinary services
Ø
Conduct research in MR
1975
– 1986:
Ø
Emphasis on community-based services
Ø
Provide services through the entire life span of individuals
with developmental disabilities
1987 – present:
Ø
Emphasis on the consumer (person-centered services)
Ø
Focus on promoting independence and inclusion
Ø Focus on consumer empowerment and self-determination (UCEDD advisory boards are composed of a majority of consumers & family members)
The re-authorization of the DD Act in 2000 with Public Law 106-402, marked an increase in funding for the
network for the first time in almost 15 years.
The amended DD Act also included expansion and development of new
programs for the UCEDDs, concurrent with an increased impetus for:
Excellence (PL 106-402 changed the name of the University Affiliated
Programs to “University Centers for Excellence in Developmental
Disabilities Education, Service, and Research.” (The new name albeit long,
has the advantage of clearly identifying the mission of this Network of
University Centers)
Importance of research in the UCEDD mission.
Accountability (UCEDDs are mandated to measure efficacy of their services, education, and research via the use of relevant outcome measures).
Linkages between the UCEDD and consumers, their families, and consumer organizations.
UCEDD Mission
Provide leadership and advise Federal, State, and community
policymakers about, and promote opportunities for individuals with developmental
disabilities to exercise self-determination, be independent, be productive, and
be integrated and included in all facets of community life. The UCEDDs shall be
interdisciplinary education, research, and public service units of universities
or public or not-for-profit entities associated with universities that engage in
core functions addressing, directly or indirectly, one or more of the areas of
emphasis.
The UCEDD network receives its core funding from the US
Administration on Developmental Disabilities (ADD). Currently there are at least
one UCEDD in every state and US territory for a total of 61 UCEDDs across the
Network.
Marc J. Tassé, Ph.D. 4-2-2004