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MATERNAL AND CHILD HEALTH
LEADERSHIP EDUCATION IN
NEURODEVELOPMENTAL AND
RELATED DISABILITIES (LEND)
MCH Training Program
PROGRAM HISTORY AND STRATEGY training for persons providing services in the newly
Children with special health care needs (CSHCN) constructed UAFs. By 1969, most training and core
have been of particular concern to the Children’s support of UAFs were provided by the Children’s
Bureau, and later to the Maternal and Child Health Bureau; as a result, much of the training focused on
Bureau (MCHB), since the Children’s Bureau’s children. Training and research about children with
inception. In the early 1950s, the chief of the Chil- mental retardation advanced hand in hand. It was
dren’s Bureau made it a priority to learn more about discovered that some forms of mental retardation—
children with mental retar- those caused by phenylketonuria (PKU) and rubella
dation. The Bureau initial- (German measles), for example—were preventable;
ly supported four demon- other forms could be dramatically improved through
stration projects that de- early and continuous intervention services, such as
veloped interdisciplinary those provided at UAFs.
clinical services for chil- By the 1980s and 1990s, families and clinicians
dren with mental retarda- were partnering to prevent developmental disabili-
tion. By 1957, states were ties, when possible, through early intervention, and
developing new diagnostic, to lessen the effects of those that could not be
consultation, and education (D & E) clinics. In several prevented entirely. Early intervention requires health
of these clinics, health professionals found that up to professionals who are knowledgeable about children
half of the children initially diagnosed as having with disabilities, who can help families understand
mental retardation did not. In 1960, the Children’s the nature of the child’s disability, who determine a
Bureau began providing grants to institutions of medical diagnosis when possible, who assess the
higher learning to train interdisciplinary teams to child’s functional level, and who assist the family in
serve children with mental retardation. learning about and accessing a wide variety of
The 1960s and 1970s were periods of rapid services. Increasingly, health professionals now strive
advancement in knowledge about children with to provide these services in a family-centered,
mental retardation. In 1963, President Kennedy community-based, coordinated fashion. By 1987, the
established the first University Affiliated Facility UAFs had become university-affiliated programs
(UAF) to research and treat mental retardation, as (UAPs), reflecting the fact that they were much more
well as train providers of services to persons with than the physical facilities initially supported by the
mental retardation. The Children’s Bureau supported legislation. In 1994, MCHB changed the name of its
Division of Research,Training and Education • Maternal and Child Health Bureau
Health Resources and Services Administration • U.S. Department of Health and Human Services
grant program from UAPs to Maternal and Child continuing education activities, providing technical
Health Leadership Education in Neurodevelopmental assistance and consultation, and developing and dis-
and Related Disabilities (LEND). LEND grants pro- seminating educational materials.
vide interdisciplinary training to enhance the clinical
expertise and leadership skills of health professionals HIGHLIGHTS
dedicated to caring for children with disabilities. Faculty. The LEND program provides clinically
based graduate and postgraduate leadership training
PROGRAM CHARACTERISTICS for health professionals in the fields of neurodevel-
The purpose of the LEND program is to improve opmental and related disabilities. Faculty and
the health of children who have, or are at risk for trainees in LEND projects represent 11 disciplines,
developing, neurodevelopmental or related disabili- including developmental pediatrics, nursing, public
ties by preparing trainees from a wide variety of health social work, nutrition, speech-language
professional disciplines to assume leadership roles pathology, audiology, pediatric dentistry, psychology,
and to ensure high levels of clinical competence. occupational therapy, physical therapy, and health
LEND program objectives include the following: administration. Parents of children with neurodevel-
(1) advancing the knowledge and skills of the full opmental disabilities are also included as program
range of child health professionals to improve health faculty or paid consultants.
care delivery systems for children with developmen- Trainees. The trainees enrolled in the program are
tal disabilities; (2) providing high-quality education working toward a graduate degree or are enrolled in
training for health professionals; (3) providing a a postgraduate program in one of the represented
wide range of health professionals with the skills disciplines, with an emphasis on infants, children,
needed to foster a community-based partnership of and adolescents with special health care needs. The
health resources and community leadership; and LEND program itself is part of a freestanding unit
(4) promoting innovative practice models that within the university; it draws trainees and faculty
enhance cultural competency, partnerships between from individual departments or colleges within the
disciplines, and family-centered approaches to care. university. Degrees for the trainees are conferred by
Funds are available to support programs that their home departments or colleges.
focus on these objectives at the regional level, Curriculum. The LEND program curriculum
including programs with an expanded scope that includes graduate education at the master’s, doctoral,
address both regional and national needs. The pro- and postdoctoral training levels, with an emphasis on
grams focus on identifying the special needs of chil- developing a knowledge and experience base that
dren and families that are specific to a clearly includes the following: (1) knowledge of all aspects
defined area of the country. They collaborate regu- of neurodevelopmental and related disabilities,
larly with the myriad of health, education, and social (2) knowledge of the family environment, and
service agencies serving children with developmen- (3) acquisition of interdisciplinary team skills.
tal disabilities. LEND training projects also function Course content and philosophy aim to prepare
as regional and national resources by conducting trainees to assume leadership roles in the develop-
5600 Fishers Lane, Room 18A-55 • Rockville, MD 20857
(301) 443-2190 • (301) 443-4842 FAX • http://www.mchb.hrsa.gov/html/drte.html
ment, improvement, and integration of health care
CO University of Colorado Health Sciences
systems for children with special health care needs in
Center
culturally appropriate, community-based, family-
DC Georgetown University
centered settings. Traineeships include classroom
FL University of Miami
course work, clinical skills building, mentoring, and
HI University of Hawaii
outreach to the community through clinics, contin-
IA University of Iowa
uing education, consultation, and technical assis-
IN Indiana University
tance.
KS University of Kansas
By providing interdisciplinary long-term training,
MA Children’s Hospital, Boston
by developing exemplary clinical service models, and
Massachusetts General Hospital
by reaching out to the community through consulta-
MD Johns Hopkins University
tion, technical assistance, and continuing education,
MO University of Missouri
the LEND program has made significant strides
NE University of Nebraska
toward developing comprehensive, coordinated
NC University of North Carolina at
services for children with developmental disabilities
Chapel Hill
and for their families.
NH Dartmouth College
NM University of New Mexico
PROGRAM PROFILE
NY Albert Einstein College of Medicine
• In FY 1999, the LEND program funded 35
University of Rochester
projects, with annual grant awards totaling about
Westchester Institute for Human
$18.2 million.
Development
• The grant awards range from $300,000 to $1.2
OH University of Cincinnati
million per year, with a mean award amount of
Ohio State University
$520,000.
OK University of Oklahoma
For additional information about the LEND
OR Oregon Health Sciences Center
projects, please visit http://www.aauap.org.
PA Children’s Seashore House
University of Pittsburgh
SD University of South Dakota
TN University of Tennessee, Memphis
Present Grant Recipients Vanderbilt University Medical Center
VA Virginia Commonwealth University
STATE GRANTEE VT University of Vermont
AL University of Alabama at Birmingham WA University of Washington
AR University of Arkansas WI University of Wisconsin-Madison
CA University of Southern California WV West Virginia University
Division of Research,Training and Education • Maternal and Child Health Bureau
Health Resources and Services Administration • U.S. Department of Health and Human Services
BIBLIOGRAPHY
Fifield M, Fifield B. 1995. The Evolution of Univer-
sity Affiliated Programs for Individuals with Develop-
mental Disabilities: Changing Expectations and Prac-
tices. Washington, DC: Administration on Develop-
mental Disabilities.
U.S. Department of Health and Human Services,
Health Resources and Services Administration,
Maternal and Child Health Bureau. 1998. Leadership
Education Excellence in Caring for Children with Neu-
rodevelopmental and Related Disabilities: Application
Guidance. Rockville, MD: U.S. Department of Health
and Human Services, Health Resources and Services
Administration, Maternal and Child Health Bureau.
5/00
5600 Fishers Lane, Room 18A-55 • Rockville, MD 20857
(301) 443-2190 • (301) 443-4842 FAX • http://www.mchb.hrsa.gov/html/drte.html
