LEND/Regional Collaboratives Partnerships in Practice Successful Partnerships Between Regional Collaboratives and LEND Programs LEND/Regional Collaboratives Partnerships April 26, 2012 Click Play or Next button on Playbar to start the quiz AU C D | w w w. a u c d . o r g 1 Association of University Centers on Disabilities
HRSA Genetics Collaboratives and AUCD/LEND 2011 RC – LEND Engagement Discussion Results2011 RC – LEND Engagement Background Discussion Results Barry H. Thompson, MD Medical Director American College of Medical Genetics This work is funded by U22MC03957, awarded as a cooperative agreement between the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch and the American College of Medical Genetics
Prior Periodic Activity ACMG has a representative to the LEND Genetics subgroup that meets annually. Group was reinvigorated in 2011. NCC Collaborator article by AUCD in June/July 2007 about LEND training in genetic counseling. Fall 2011 AUCD and ACMG staff began to talk about how to encourage increased interaction between the RCs and LEND Programs. 3
Current RC Engagement 4
RC Interest in Future and/or Continued Partnership 5
LEND 2011 Needs Assessment AU C D 6 Association of University Centers on Disabilities
Encouraging Future Collaborations Unanimous (of those RC representatives on the call comfortable indicating as such) agreement that mutual benefit would be gained by having the RCs and the LENDs work together more closely. Bi-directional collaboration. Each side actively reach out to the other at the LEND program and RC level. NCC provided information to LEND about RCs with contact information at the in-person LEND meeting November 15, 2011. NCC provided RCs with a by-RC directory of LEND programs at their meeting November 17-18, 2011 and encouraged them to follow-up with their respective programs. 7
Highlighting Partnerships in Practice This webinar and its goals: To share successful models of partnership between LEND Programs and Regional Collaboratives; To identify ways to initiate and sustain a relationship with your Regional Collaborative or LEND program. 8
Louise Iwaishi Louise Kido Iwaishi, MD has been Program Director of the Hawaii MCH LEND Program since 1994. She is the Director of the Community Pediatrics Institute, Department of Pediatrics, University of Hawaii; Medical Director of the Family Health Services Division(Title V Agency), Department of Health; and Chief of Pediatrics at the Shriners Hospitals for Children-Honolulu Unit. Dr. Iwaishi provides consultation to the State Departments of Health, Education and Human Services and participates in numerous local, state and national organizations related to Children with Special Health Care Needs. She attended Pomona College, California, and the John A. Burns School of Medicine, University of Hawaii.
Successful Models of Partnerships Regional Collaboratives and LEND Programs Louise Iwaishi, MD Hawaii MCH LEND Program April 26, 2012
Objectives • Provide overview of partners • Share underlying philosophy of successful partnerships • Describe specific trainee activities • Identify faculty/program benefits
Partners Western States PacWest LEND Consortium Genetic Services Collaborative • Alaska • Alaska • Arizona • California • California • Hawaii • Colorado • Idaho • Hawai‘i(Guam) • • Guam Nevada • New Mexico • Oregon • Oregon • Washington • Utah(Idaho-Montana- N.Dakota-Wyoming) • Washington
Philosophy • Proactive network • Strategic MCHB performance measures • Equity not equal contributions • Shared successes
Trainees and Faculty
Hawai'i MCH LEND Applied Knowledge Systems Knowledge Team Knowledge Interdisciplinary Knowledge Discipline Knowledge Content Knowledge Knowledge of Self
Advanced Leadership Curriculum • Project based • High level of interface • Community oriented • Tied to leadership • Conquer fears
STRATEGIES FOR SUCCESS
• Problem Based Learning • Public Health Policy • Telemedicine Services
Trainee Activities • Problem based Learning active cases (metabolic nutritionist, clinical geneticist) • Medical Home concepts (genetic specific portable medical record)
Mutual Benefit Faculty Technical Assistance-NBS advisory; selective workgroup • Presentations-AAP Medical Home Visiting Professor • Publications -McWalter,Kirsty,etal Community Recommendations for Outreach Activities for Medicaid Managed Care for the Aged, Blind and Disabled.Hawai‘i Medical Journal 2007;36 -40
Mutual Benefit Program • Trainees- Genetic counselor, Family • Faculty- Clinical Geneticist, Metabolic Nutritionist, NBS Nurse and Social Worker • MOA- towards MCH goals and performance measures
Conclusion Collaborative Partnerships • Proactive network • Strategic MCHB performance measures • Equity not equal contributions • Shared successes
Aloha! Visit us at: http://blog.hawaii.edu/mchlend/
Lori Dean Lori is a certified genetic counselor, assistant professor, program manager for the Heartland Collaborative, and interim chair of the genetic counseling department at the University of Arkansas for the Medical Sciences. Lori's professional interests are in education, public health genomics, the use of complementary and alternative medicine in the treatment of genetic conditions, and pastoral care.
Jeanine Schulze Jeanine Schulze is a genetic counseling graduate student at the University of Arkansas for Medical Sciences. She was a LEND trainee from January to December of 2011, and in that time had the opportunity to expander her knowledge of interdisciplinary healthcare while assisting other disciplines in understanding diverse genetic concepts. She is currently completing her thesis in collaboration with the Heartland Regional Genetics and Newborn Screening Collaborative on the topic of healthcare transition. Jeanine is a Chicago native, and hopes to return there upon graduation in May 2012
Successful Partnerships: A Student Perspective Jeanine Schulze, BA Genetic Counseling Student University of Arkansas for Medical Sciences
My Experience 2010 Started at UAMS Graduate School Met with Lori Williamson Dean Interviewed for LEND spot 2011 Started with the LEND program Transition literature review Developed transition survey Graduated LEND Program 2012 Presented results at ACMG & UAMS
Survey Project: Transition Knowledge, Attitudes, and Practices Healthcare Transition in Practice: A KAP survey of pediatric genetics providers in the Heartland Genetics and Newborn Screening Collaborative.
Opportunity to travel to Oklahoma city, to participate in planning discussion with the Transition Pilot Group.
Learning to see things from a Public Health Perspective
Clinics ADHD clinic Autism Metabolic clinic Preschool Language Enrichment Program (PLEP) Developmental Assessment clinics Fetal Alcohol Spectrum Family Group Down Syndrome Follow-up clinic Genetics clinic High-risk Newborn Follow-up Clinic M-CHAT clinic
Ability travel and attend conferences: Arkansas Down Syndrome Association 6 th Annual Health Conference
Participated in genetics education for diverse group of health professionals
Connections Fact sheet for FASD taskforce Autism awareness Interdisciplinary approach
Learning Balance
A Successful Partnership
John B. Moeschler Dr. Moeschler is Director of Clinical Genetics and Professor of Pediatrics at Dartmouth Medical School. He is also the Director of the New Hampshire LEND Program. Dr. Moeschler received his MD from the University of Nebraska and completed his Fellowship in Developmental Pediatrics at the University of Washington. In 1984, he was Board Certified in Medical Genetics. In 2005, Dr. Moeschler received his M.S. in HealthCare Improvement from the Center for Evaluative Clinical Studies at Dartmouth. He chairs the Advisory Committee on Newborn Screening for the State of New Hampshire and is PI on a CDC funded Birth Defects Registry.
NEGC-NH LEND Collaboration John B. Moeschler MD, MS Professor of Pediatrics By Webinar, AUCD, NCC April 26, 2012
This presentation • A bit about NH LEND • A bit about NEGC • Collaboration plans
The New Hampshire LEND Program John B. Moeschler, M.D., M.S. Director
NH LEND Program Institute on Disability/UCED University of New Hampshire Center for Community Inclusion & Disability Studies/UCED
LEND Mission • Maternal and Child Health workforce development program • Global Aim: To improve systems of care for children with NDD and their families • Provide high quality interdisciplinary education • Emphasize the integration of services supported by State, local agencies, organizations, private providers and communities. • Promote innovative practice models
NH LEND Trainees 2011-12
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