AUCD and the LEND Program Fred Palmer, MD and George Jesien, PhD Waisman Center – Registry Meeting June 29, 2007.

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Presentation transcript:

AUCD and the LEND Program Fred Palmer, MD and George Jesien, PhD Waisman Center – Registry Meeting June 29, 2007

Three National Networks

AUCD Represents and Supports Three National Networks Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs: 35 University Centers for Excellence in Developmental Disabilities (UCEDDs): 67 Formerly University Affiliated Programs (UAPs) Developmental Disabilities Research Centers (DDRCs): 21

Leadership Education in Neurodevelopmental Disabilities

LEND Network

Leadership Education in Neurodevelopment and Related Disabilities (LEND) Programs Funded by the MCHB and work directly with State Title V Agencies Ensure health care professionals have the necessary leadership skills and most current knowledge Provide a range of interdisciplinary clinical services at university & community settings Address the unique needs of children with special health care needs & their families Promote cultural competency, family-based care and interdisciplinary partnerships.

Faculty and students are drawn from 13 core disciplines AudiologyGenetics Health Administration NursingNutrition Occupational Therapy Pediatrics Pediatric Dentistry Physical Therapy Psychology Social Work Special Education Speech & Language Parents and consumers

National Information Retrieval System (NIRS) Web-based network wide database –Trainee data and follow-up survey –Products –Projects –Technical Assistance Activities Tied into performance measures

Clinical Services & Training (FY05) 62,147 clients seen in Center Clinics & Services –22% minorities 146,810 served in the community –24% minorities Nearly 2,000 interdisciplinary long-term trainees

SSA/AUCD: A National Collaboration

Pediatric Medical Units  Help adjudicators make good decisions as early as possible in the process  Improve timeliness,& efficiency of childhood determinations  Employ interdisciplinary teams to review case and targeted assessments as needed

PMU Locations Boling Center for Developmental Disabilities, U of Tennessee Health Science Center - Memphis, TN Center for Disabilities & Development, U of Iowa - Iowa City, IA Center on Human Development & Disability, U of Washington LEND Program, - Seattle, WA Institute for Community Inclusion, Children’s Hospital, U of Massachusetts - Boston, MA JFK Partners, U of Colorado Health Sciences Center - Denver CO Mailman Center for Child Development, U of Miami Miller School of Medicine - Miami, FL Nisonger Center, Ohio State University - Columbus, OH Nisonger Center, Ohio State University - Columbus, OH University of Illinois UCE - Chicago, IL

Record Review Report Template Synthesize file evidence Describe severity of impairments, especially functional limitations Resolve inconsistencies and/or contradictions Recommend additional evidence, if needed

Project Evaluation Central data collection –Password protected access –Anonymous case data: no identifiers Sites enter data for each referral –Case characteristics –Secure on-line case reporting –SSA role  Track final case outcome

Thank You! George Jesien, Ph.D. Executive Director Fred Palmer, MD, Director, Boling Center

Direct Clinical Services (LEND only): By Age AGE TOTAL 0-29,41512,07710,54420,61259, ,12114,52012,55520,83263, ,83614,64016,72231,27982, ,8328,4848,58116,87244, ,0842,2912,5273,93912, ,9846,2718,7839,68831, plus3731,9762,0832,4298,460 No Age Data Provided 2, , ,739 TOTAL38,42660,56162,980106,122307,551