LEND/Regional Collaboratives Partnerships in Practice Successful - - PowerPoint PPT Presentation
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
AU C D | w w w. a u c d . o r g
Association of University Centers on Disabilities
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Successful Partnerships Between Regional Collaboratives and LEND Programs LEND/Regional Collaboratives Partnerships April 26, 2012
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
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.
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AU C D
Association of University Centers on Disabilities
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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.
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.
Highlighting Partnerships in Practice This webinar and its goals:
LEND Programs and Regional Collaboratives;
with your Regional Collaborative or LEND program.
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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
successful partnerships
PacWest LEND Consortium
N.Dakota-Wyoming)
Western States Genetic Services Collaborative
Knowledge of Self Interdisciplinary Knowledge Systems Knowledge Team Knowledge Applied Knowledge Content Knowledge Discipline Knowledge
Faculty Technical Assistance-NBS advisory; selective workgroup
Outreach Activities for Medicaid Managed Care for the Aged, Blind and Disabled.Hawai‘i Medical Journal 2007;36-40
Program
Nurse and Social Worker
Visit us at: http://blog.hawaii.edu/mchlend/
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 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
Jeanine Schulze, BA Genetic Counseling Student University of Arkansas for Medical Sciences
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 6th Annual Health Conference
Participated in genetics
education for diverse group of health professionals
Connections Fact sheet for FASD taskforce Autism awareness Interdisciplinary approach
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.
John B. Moeschler MD, MS Professor of Pediatrics By Webinar, AUCD, NCC April 26, 2012
Institute on Disability/UCED University of New Hampshire Center for Community Inclusion & Disability Studies/UCED
development program
To improve systems of care for children with NDD and their families
agencies, organizations, private providers and communities.
– Director, Center for Medical Home Improvement, NH. – Recently selected for a national appointment as Innovation Advisor for the Centers for Medicare and Medicaid Services' (CMS)
– Senior Program Specialist, AUCD MCHB Cooperative Agreement
– Associate Research Scientist, Institute of Education Science, US Department of Education.
– Board President, Disability Rights Center, (NH Protection & Advocacy)
– Executive Committee, NH Council for Children & Adolescents with Chronic Health Conditions
– Board Member, NH Children’s Mental Health Community of Practice – Board Member, NH Association of School Psychologists
– Director, NH Title V: Special Medical Services
– Administrator, Bureau of Developmental Services, NH DHHS
– Executive Administrator, NH Council on Autism Spectrum Disorders
The mission of the New England Genetics Collaborative (NEGC) is to promote and improve health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut
– Medical Home and Transition – Health care finance and access – Genetic health care quality improvement – Newborn screening Long-term follow-up – Laboratory Quality Assurance – Emergency Preparedness – NEGC/LEND Collaborations
Examples, successes
in the GEMMS survey and pilot
panel in LEND seminar using PKU as example
LEND and NEGC on ACA, Medicaid access LEND/NEGC successes
at CHB/ICI is member of NEGC Advisory Committee
NEGC is named faculty in Genetics and Public Health
evaluator for both LEND and NEGC.
participate for 5 years
genetics education (“pre-service education”) among NE LEND programs in genetics and genomics, especially basic public health genetics, newborn screening, genetics of autism, intellectual disability, Sickle Cell Disease, Hemophilia.
national LEND working group on Genetics Education energized by Jill Shuger and Denise Sofka
two Genetic Counselor training programs in NE
master-level students to LEND programs
fellows” per year for LEND training (matching program between LEND and NEGC); any LEND program can apply
workforce needed to care for those children with special health care needs identified by NBS programs (McGrath, Shipman) with particular attention to metabolic disorders, SCID and CCHD
with NE LEND education and
trainees to support GEMMS with LEND faculty participation.
requirements for trainee skill development in technical assistance and continuing education to NEGC needs; e.g., person-centered planning linked with health care transition (NEGC: Cooley and Waisbren); Youth leadership development for those living with Sickle Cell Disease and
(Kubiceck, Odesino, Kavanagh).
Thank you
– www.negenetics.org
– www.mchlend.unh.edu
John.moeschler@dartmouth.edu