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 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Regional Consortiums: Marching Forward Toward Better Systems of Care for Everyone

By Stephen R. Hooper, Ph.D.
Professor of Psychiatry, Psychology, Pediatrics, and Education
LEND Director
Director of Training and Education
Carolina Institute for Developmental Disabilities
University of North Carolina School of Medicine
Chapel Hill, North Carolina 

The Maternal and Child Health Bureau (MCHB) has a long standing commitment to advancing the development of services for underserved populations, with a particular focus on linking various agencies, advocacy groups and personnel into more efficient and effective systems of care. These efforts are fueled, in part, by their emphasis on interdisciplinary involvement, cultural and linguistic diversity, and families. One of the major interdisciplinary investments by MCHB has been in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training program. The fundamental goal of the LEND training program is to improve the health of infants, children and adolescents with disabilities. This goal is accomplished by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields. The LEND programs are funded under the Combating Autism Act of 2006 (Public Law 109-416) and managed under the auspices of the Health Resources and Service's Administration's (HRSA) MCHB. At present, there are 43 LEND programs scattered across 33 states. Consistent with the National Strategic Plan for MCH Training (MCH, 2010), each of the 43 LEND programs addresses the following objectives:

  • Advancing the knowledge and skills of the full range of child health professionals to improve health care delivery systems for children (and adults) with Autism Spectrum Disorder (ASD) and related intellectual/developmental disabilities (I/DD)

  • Providing high-quality interdisciplinary education to health professionals which emphasizes the integration of services supported by the state, local agencies, organizations, private providers and communities

  • Providing a wide range of health professionals with the skills needed to foster a community-based partnership of health resources and community leadership

  • Promoting innovative practice models that enhance cultural competency, partnerships among disciplines, and family-centered approaches to care

  • Demonstrating that the proposed interdisciplinary training opportunities will increase diagnosis of, or rule out, individuals with ASD or other I/DD

While each LEND program is unique, shaped in large part by their state and regional needs, the LEND programs are in an important position to provide linkages not only within their respective states, but also to assert a positive impact within their national regions. These collaborative efforts within regions permit the examination of national issues of importance for children with special health care needs and their families, and allow for the sharing of innovative, evidence-based practices and products. Collectively, with technical assistance from HRSA and the Association of University Centers on Disabilities (AUCD), the LEND programs form a national network that shares information and resources to maximize their impact, with much of the network being organized via regional consortiums.


LEND Regional Consortiums


Within the LEND network, there are seven different groups that have organized to address key issues related to their region. Specific regional groups and their LEND (and University Centers for Excellence in Developmental Disabilities [UCEDD]) members include:

  • PacWest (OR, CA, HI, UT, NM, CO, NV, AK, AZ)
  • Southeast Region Consortium (NC, TN-Vanderbilt, TN-Boling, FL-Miami, VA, AL, MS,GA-CLDD, FL-CIC, SC, GA IHDD, KY, MS)
  • Northeast New England (VT, NH, CT, MA-Shriver, MA-ICI, NY-Strong, NY-AECOM, NY-Westchester)
  • Midwest (SD, NE, KS, MO, IA)
  • Great Lakes (WI, MN, IL, IN)
  • Mid-Atlantic (DC, MD, VA, WVU, PA-CHOP)
  • Central Conference Training Consortium (TN-Boling, TN-Vanderbilt, IN-Riley, OH-Cincinnati, OH-Nisonger, MO, IL, MN, WI, ND, IN-Institute of Disability & Community, KY, MI)


Given the overall mission of LEND, all of these regional groups have focused on training, professional development and infrastructure building. These activities have included collaborative webinars, regional conferences, workshops, and meetings with both faculty and trainees. One group, the Central Conference Training Consortium, even has their own website detailing their governance and ongoing collaborative activities. Taken together, these initiatives have contributed to ongoing infrastructure building and evolving systems of care for children with special health care needs and their families.


Southeast Region Consortium


The North Carolina LEND Program at the Carolina Institute for Developmental Disabilities at the University of North Carolina School of Medicine has been actively involved in the Southeast Region Consortium. This group of LEND and UCEDD partners, largely encapsulating Region IV, has worked collectively over the past 10 years to develop training activities broadly addressing Title V needs. This group convenes via regular quarterly conference calls, and over the past year has inventoried each program to compile all of their respective training topics and modules. In this regard, the group has a library of over 125 prepared presentations in the areas of CSHCN, ASD and related I/DD, health care services, leadership training and cultural diversity to mention just a few. This library of topics has been cross-listed with the goals of each state Title V MCH Block Grant in the region to begin aligning potential presentations and modules for the Title V workforce in the southeast region. With the assistance of AMCHP, we also surveyed all of the Title V Directors in the southeast for their input. These initiatives have culminated in an annual training calendar that will showcase each LEND/UCEDD program in the region and, in partnership with AUCD, the training modules will be presented on a monthly basis to a national audience. The “Southeast Region Consortium and AUCD Presents!” program will begin in the fall of 2011 and will be available to both regional and national audiences.


Directions for the Future


The efforts of each of these seven regional consortiums are noteworthy, and their collective contribution to building the MCH workforce is impressive. These collaborative regional efforts address not only state-based needs, but national/regional challenges, and they undoubtedly permit ongoing infrastructure building. These innovative partnerships have contributed to training the MCH workforce, and will contribute to ongoing efforts to build more effective and efficient systems of care for children with special health care needs and their families. All Title V Directors and their personnel are highly encouraged to reach out to their respective LEND program and/or regional consortium in an effort to work collaboratively on these ongoing infrastructure building endeavors.