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 Directorgjesien@aucd.org

Fred Palmer, MD, Director, Boling Center FPALMER@UTMEM1.UTMEM.EDU

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