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AUCD and the LEND Program. Fred Palmer, MD and George Jesien, PhD Waisman Center – Registry Meeting June 29, 2007. Three National Networks. Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs: 35 - PowerPoint PPT Presentation
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AUCD and the LEND ProgramAUCD and the LEND Program
Fred Palmer, MD and Fred Palmer, MD and George Jesien, PhD George Jesien, PhD
Waisman Center – Registry MeetingWaisman Center – Registry MeetingJune 29, 2007June 29, 2007
Three National NetworksThree National Networks
AUCD Represents and Supports AUCD Represents and Supports Three National NetworksThree National Networks
Leadership Education in Leadership Education in Neurodevelopmental and Related Neurodevelopmental and Related Disabilities (LEND) Programs: 35Disabilities (LEND) Programs: 35
University Centers for Excellence in University Centers for Excellence in
Developmental Disabilities (UCEDDs): 67Developmental Disabilities (UCEDDs): 67 Formerly University Affiliated Programs (UAPs)Formerly University Affiliated Programs (UAPs)
Developmental Disabilities Research Developmental Disabilities Research Centers (DDRCs): 21Centers (DDRCs): 21
LLeadership eadership EEducation in ducation in NNeurodevelopmental eurodevelopmental DDisabilitiesisabilities
LEND NetworkLEND Network
Leadership Education in Leadership Education in Neurodevelopment and Related Neurodevelopment and Related
Disabilities (LEND) ProgramsDisabilities (LEND) Programs
Funded by the MCHB and work directly with Funded by the MCHB and work directly with State Title V AgenciesState Title V AgenciesEnsure health care professionals have the Ensure health care professionals have the necessary leadership skills and most current necessary leadership skills and most current knowledge knowledge Provide a range of interdisciplinary clinical Provide a range of interdisciplinary clinical services at university & community settingsservices at university & community settingsAddress the unique needs of children with Address the unique needs of children with special health care needs & their familiesspecial health care needs & their familiesPromote cultural competency, family-based care Promote cultural competency, family-based care and interdisciplinary partnerships.and interdisciplinary partnerships.
Faculty and students are Faculty and students are drawn from 13 core disciplinesdrawn from 13 core disciplines
AudiologyAudiologyGenetics Genetics Health Health AdministrationAdministrationNursingNursingNutrition Nutrition Occupational Occupational TherapyTherapyPediatrics Pediatrics Pediatric DentistryPediatric Dentistry
Physical TherapyPhysical Therapy
PsychologyPsychology
Social WorkSocial Work
Special EducationSpecial Education
Speech & Language Speech & Language
Parents and Parents and consumers consumers
National Information Retrieval National Information Retrieval System (NIRS)System (NIRS)
Web-based network wide databaseWeb-based network wide database– Trainee data and follow-up surveyTrainee data and follow-up survey– ProductsProducts– ProjectsProjects– Technical Assistance ActivitiesTechnical Assistance Activities
Tied into performance measuresTied into performance measures
Clinical Services & Training Clinical Services & Training (FY05)(FY05)
62,147 clients seen in Center Clinics & 62,147 clients seen in Center Clinics & Services Services – 22% minorities22% minorities
146,810 served in the community146,810 served in the community– 24% minorities24% minorities
Nearly 2,000 interdisciplinary long-term Nearly 2,000 interdisciplinary long-term traineestrainees
0
5,000
10,000
15,000
20,000
25,000
30,000
35,000
0-2 3-5 6-11 12-17 18-21 22-54 55-plus
Clients Served by LEND(2003-06)
2003
2004
2005
2006
SSA/AUCD: A National CollaborationSSA/AUCD: A National Collaboration
Pediatric Medical UnitsPediatric Medical Units
Help adjudicators make good decisions as Help adjudicators make good decisions as early as possible in the processearly as possible in the process
Improve timeliness,& efficiency of Improve timeliness,& efficiency of childhood determinationschildhood determinations
Employ interdisciplinary teams to review Employ interdisciplinary teams to review case and targeted assessments as case and targeted assessments as neededneeded
PMU LocationsPMU Locations
Boling Center for Developmental Disabilities, U of Tennessee Boling Center for Developmental Disabilities, U of Tennessee Health Science Center - Memphis, TN Health Science Center - Memphis, TN Center for Disabilities & Development, U of Iowa - Iowa City, IA Center for Disabilities & Development, U of Iowa - Iowa City, IA Center on Human Development & Disability, U of Washington Center on Human Development & Disability, U of Washington LEND Program, - Seattle, WA LEND Program, - Seattle, WA Institute for Community Inclusion, Children’s Hospital, U of Institute for Community Inclusion, Children’s Hospital, U of Massachusetts - Boston, MAMassachusetts - Boston, MA JFK Partners, U of Colorado Health Sciences Center - Denver JFK Partners, U of Colorado Health Sciences Center - Denver COCOMailman Center for Child Development, U of Miami Miller Mailman Center for Child Development, U of Miami Miller School of Medicine - Miami, FL School of Medicine - Miami, FL Nisonger Center, Ohio State University - Columbus, OH Nisonger Center, Ohio State University - Columbus, OH University of Illinois UCE - Chicago, ILUniversity of Illinois UCE - Chicago, IL
Record Review Report TemplateRecord Review Report Template
Synthesize file evidence Synthesize file evidence Describe severity of impairments, Describe severity of impairments, especially functional limitationsespecially functional limitationsResolve inconsistencies and/or Resolve inconsistencies and/or contradictions contradictions Recommend additional evidence, if Recommend additional evidence, if needed needed
Project Evaluation Project Evaluation
Central data collection Central data collection – Password protected accessPassword protected access– Anonymous case data: no identifiersAnonymous case data: no identifiers
Sites enter data for each referralSites enter data for each referral– Case characteristics Case characteristics – Secure on-line case reporting Secure on-line case reporting
– SSA roleSSA role Track final case outcomeTrack final case outcome
www.aucd.org
Thank You!Thank You!
www.aucd.org
George Jesien, Ph.D. Executive [email protected]
Fred Palmer, MD, Director, Boling Center [email protected]
Direct Clinical Services (LEND only): By Age
AGE 2003 2004 2005 2006 TOTAL
0-2 9,415 12,077 10,544 20,612 59,623
3-5 8,121 14,520 12,555 20,832 63,830
6-11 9,836 14,640 16,722 31,279 82,598
12-17 4,832 8,484 8,581 16,872 44,241
18-21 1,084 2,291 2,527 3,939 12,481
22-54 1,984 6,271 8,783 9,688 31,579
55-plus 373 1,976 2,083 2,429 8,460
No Age Data Provided
2,781 302 1,185 471 4,739
TOTAL 38,426 60,561 62,980 106,122 307,551