LEND/Regional Collaboratives Partnerships in Practice Successful - - PowerPoint PPT Presentation

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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


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AU C D | w w w. a u c d . o r g

Association of University Centers on Disabilities

LEND/Regional Collaboratives Partnerships in Practice

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Successful Partnerships Between Regional Collaboratives and LEND Programs LEND/Regional Collaboratives Partnerships April 26, 2012

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Barry H. Thompson, MD Medical Director American College of Medical Genetics

2011 RC –LEND Engagement Discussion Results2011 RC –LEND Engagement Discussion Results

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

HRSA Genetics Collaboratives and AUCD/LEND Background

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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.

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Current RC Engagement

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RC Interest in Future and/or Continued Partnership

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AU C D

Association of University Centers on Disabilities

LEND 2011 Needs Assessment

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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.

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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.

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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.

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Successful Models of Partnerships Regional Collaboratives and LEND Programs

Louise Iwaishi, MD Hawaii MCH LEND Program April 26, 2012

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Objectives

  • Provide overview of partners
  • Share underlying philosophy of

successful partnerships

  • Describe specific trainee activities
  • Identify faculty/program benefits
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Partners

PacWest LEND Consortium

  • Alaska
  • Arizona
  • California
  • Colorado
  • Hawai‘i(Guam)
  • Nevada
  • New Mexico
  • Oregon
  • Utah(Idaho-Montana-

N.Dakota-Wyoming)

  • Washington

Western States Genetic Services Collaborative

  • Alaska
  • California
  • Hawaii
  • Idaho
  • Guam
  • Oregon
  • Washington
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Philosophy

  • Proactive network
  • Strategic MCHB performance measures
  • Equity not equal contributions
  • Shared successes
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Trainees and Faculty

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Hawai'i MCH LEND

Knowledge of Self Interdisciplinary Knowledge Systems Knowledge Team Knowledge Applied Knowledge Content Knowledge Discipline Knowledge

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Advanced Leadership Curriculum

  • Project based
  • High level of interface
  • Community oriented
  • Tied to leadership
  • Conquer fears
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STRATEGIES FOR SUCCESS

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  • Problem Based Learning
  • Public Health Policy
  • Telemedicine Services
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Trainee Activities

  • Problem based Learning active cases

(metabolic nutritionist, clinical geneticist)

  • Medical Home concepts (genetic specific

portable medical record)

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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

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Mutual Benefit

Program

  • Trainees- Genetic counselor, Family
  • Faculty- Clinical Geneticist, Metabolic Nutritionist, NBS

Nurse and Social Worker

  • MOA- towards MCH goals and performance measures
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Conclusion Collaborative Partnerships

  • Proactive network
  • Strategic MCHB performance measures
  • Equity not equal contributions
  • Shared successes
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Aloha!

Visit us at: http://blog.hawaii.edu/mchlend/

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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.

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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

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Jeanine Schulze, BA Genetic Counseling Student University of Arkansas for Medical Sciences

Successful Partnerships: A Student Perspective

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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

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 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.

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 Opportunity to travel to Oklahoma

city, to participate in planning discussion with the Transition Pilot Group.

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 Learning to see things from a

Public Health Perspective

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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

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 Ability travel and attend conferences:

Arkansas Down Syndrome Association 6th Annual Health Conference

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 Participated in genetics

education for diverse group of health professionals

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 Connections  Fact sheet for FASD taskforce  Autism awareness  Interdisciplinary approach

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Learning Balance

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A Successful Partnership

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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.

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NEGC-NH LEND Collaboration

John B. Moeschler MD, MS Professor of Pediatrics By Webinar, AUCD, NCC April 26, 2012

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This presentation

  • A bit about NH LEND
  • A bit about NEGC
  • Collaboration plans
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The New Hampshire LEND Program

John B. Moeschler, M.D., M.S. Director

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NH LEND Program

Institute on Disability/UCED University of New Hampshire Center for Community Inclusion & Disability Studies/UCED

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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
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NH LEND Trainees 2011-12

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Former Trainees National Leadership Roles

  • Jeanne McAllister, BSN, MS, MHA (1996)

– 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)

  • Rebecca Carman, MSW (2003)

– Senior Program Specialist, AUCD MCHB Cooperative Agreement

  • Celia Rosenquist, Ph.D. (2005)

– Associate Research Scientist, Institute of Education Science, US Department of Education.

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Former Trainees Public Health & State Leadership Roles

  • Laurie McCray, RN (1998)

– Board President, Disability Rights Center, (NH Protection & Advocacy)

  • M Butler, RN (2002)

– Executive Committee, NH Council for Children & Adolescents with Chronic Health Conditions

  • K Salvati, MS (2004)

– Board Member, NH Children’s Mental Health Community of Practice – Board Member, NH Association of School Psychologists

  • Elizabeth Collins, RN, MSN (2005)

– Director, NH Title V: Special Medical Services

  • Lorene Reagan, RN (2011)

– Administrator, Bureau of Developmental Services, NH DHHS

  • Kirsten Murphy (2011)

– Executive Administrator, NH Council on Autism Spectrum Disorders

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National LEND Network

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New England Genetics Collaborative

John B. Moeschler, M.D.,M.S Monica McClain, PhD Co-Directors

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Mission

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

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Innovation and Experimentation

  • Work Groups

– 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

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Collaboration

Examples, successes

  • LEND fellows participation

in the GEMMS survey and pilot

  • Lifecourse interdisciplinary

panel in LEND seminar using PKU as example

  • Kay Johnson’s work with

LEND and NEGC on ACA, Medicaid access LEND/NEGC successes

  • David Helm, LEND Director

at CHB/ICI is member of NEGC Advisory Committee

  • Monica McClain PhD of

NEGC is named faculty in Genetics and Public Health

  • Peter Antal PhD is Program

evaluator for both LEND and NEGC.

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Key factors for success

  • Shared (overlapping) missions
  • Shared funding source (HRSA/MCHB, different

divisions or branches)

  • Moeschler PI both projects
  • Ease of communication (helped by proximity)
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What does it take to establish and maintain successful collaboration?

  • A champion, someone in leadership role

invested in both programs

  • A willingness to share time and resources
  • Open and easy communication
  • Imagination and inventiveness
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What barriers?

  • Busy schedules, time commitments and

priorities

  • Missions also differ
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Next five years:

  • Invite all LEND programs in NE to

participate for 5 years

  • Examine current status of

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.

  • Participate with AUCD ad hoc

national LEND working group on Genetics Education energized by Jill Shuger and Denise Sofka

  • Investigate collaboration with the

two Genetic Counselor training programs in NE

  • By end of year 2, recruit 2 GC

master-level students to LEND programs

  • Fund one-two “community

fellows” per year for LEND training (matching program between LEND and NEGC); any LEND program can apply

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Next five years:

  • Continue to assess the

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

  • Link GEMMS meaningfully

with NE LEND education and

  • ffer opportunities for LEND

trainees to support GEMMS with LEND faculty participation.

  • Link LEND program

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

  • ther genetic conditions

(Kubiceck, Odesino, Kavanagh).

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Thank you

  • Monica McClain PhD NEGC

– www.negenetics.org

  • Betsy Humphreys Med, NH

LEND

– www.mchlend.unh.edu

John.moeschler@dartmouth.edu