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Sunday February 16, 2003
 

SPECIAL SESSION:  Rural Health Issues
1:00 pm – 2:45 pm

Rural Health Issues
Donna Bainbridge, Project Director, Research and Training Center on Rural Rehabilitation Services, University of Montana Rural Institute, Missoula, Montana

Telemedicine
Stephen Sulzbacher, Associate Professor of Pediatrics and Psychiatry, University of Washington School of Medicine, Seattle, Washington

Barbara Popper, Director, Family Voices in SCHIP Implementation Project, Family Voices Federation for Children with Special Needs Boston, Massachusetts

Twyla Bohl, Co-Coordinator, Family Voices of North Dakota, Family Partner, Consortium for Children and Youth with Disabilities and Special Health Care Needs, Knox, North Dakota

Discussion

3:15 pm – 5:00 pm

Region X White Paper
Karen Martinek, Director, Children with Special Health Care Needs, Section of Maternal, Child, and Family Health, Anchorage, Alaska

Transportation Issues in Rural Areas
Bryna Helfer, Transportation Services Advisor, Federal Transit Administration, US Department of Transportation, Washington, DC
 

Discussion

Monday, February 17, 2003
 

8:30 am – 8:45 am

Welcome and Introductions

8:45 am – 9:00 am

The New Freedom Initiative and Objective 16.23
Diana Denboba, Public Health Analyst, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Rockville, Maryland

9:00 am – 9:15 am

Goals of the Meeting
Carolyn Gleason, Public Health Advisor, HRSA Seattle Regional Division, Seattle, Washington

9:15 am – 9:45 am

Organization, Development, and Implementation of State Objectives: The Missouri Experience

Rick Horrell, Bureau Chief, Missouri Department of Health and Senior Services, Jefferson City, Missouri

10:00 am – 11:45 am

Panel and Discussion:  Family Participation and Satisfaction

a) National Perspective on Family-Professional Partnerships
Jennifer Cernoch, Executive Director, Family Voices, San Antonio, Texas

b) Family Leadership and Partnership Building in Washington
Karen Kershaw, WISE Grant Coordinator, Children with Special Health Care Needs, Washington State Department of Health, Olympia, Washington

Leslie Carroll, Family Consultant, Washington State Department of Health, Olympia, Washington

c) Facilitated Open Discussion

d) Regional Breakout Session

1:15 pm – 3:15 pm

Panel and Discussion: Access to a Medical Home

a) Moderator
Monique Fountain, Director, Medical Home Program, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Rockville, Maryland

b) National Perspective on Medical Home
Lauri Levin, Technical Assistance Manager, Division of Children With Special Needs, American Academy of Pediatrics, Elk Grove Village, Illinois

c) Promising Practices and Lessons Learned from California
Kathryn Smith, Assistant Nursing Director, USC University Affiliated Program, Children’s Hospital Los Angeles, Los Angeles Medical Home Project, Los Angeles, California

d) Promising Practices and Lessons Learned from Utah
Chuck Norlin, Associate Professor, Department of Pediatrics, University of Utah, Salt Lake City, Utah

e) Facilitated Open Discussion

f) Regional Breakout Session

3:30 pm – 5:00 pm

State Team Breakout Session

States discuss status of the state in terms of core performance measures discussed today (Family Partnerships and Medical Home); what are the state’s strengths, challenges, opportunities and barriers in these areas? Who are partners and who should be recruited to assist? For high priority areas, start considering how you would plan some action:  What would it take to move the state forward towards achieving each goal; what should/can be done and by whom? What are the steps to be taken by this team when we go back to our state?

5:30 pm – 7:30 pm

Family Voices and SCHIP Project Reception and Meeting for Parents
Brighton Room

Tuesday, February 18, 2003
 

8:30 am – 10:00 am

Plenary Session: Data and Accountability
Paul Newacheck, Professor, Institute for Health Policy Studies, University of California at San Francisco, San Francisco, California

Making Use of Data: Family Perspectives
Donene Feist, Director, Family Voices of North Dakota, Independent Living Advocate for Freedom Resource Center for Independent Living, Edgeley, North Dakota Christy Blakely, State Coordinator, Family Voices of Colorado, Denver, Colorado

10:15 am – 11:00 am

Panel and Discussion: Access to Affordable Insurance

a) National Perspective on Financing Health Care for CSHCN
John Neff, Director, Center for Children with Special Needs, Children’s Hospital and Regional Medical Center, Seattle, Washington

b) Promising Practices and Lessons Learned from Arizona

Cathryn Echeverria, Chief, Arizona Department of Health Services, Office for Children with Special Health Care Needs, Phoenix, Arizona

c) Facilitated Open Discussion

11:15 am – 12:15 pm

Panel and Discussion: Quality Assurance

a) Adolescents with Special Health Care Needs: Health Systems and Communities Respond
Christina Bethell, Senior Vice President, Foundation for Accountability (FACCT), Portland, Oregon

b) Identify…Collaborate…Improve:  Using the Shared Responsibilities Tools to Improve Quality of Care for CSHCN
Susan Epstein, Director, New England SERVE, Boston, Massachusetts

1:45 pm – 3:30 pm

Panel and Discussion:  Early and Continuous Screening

a) National Perspective on Early and Continuous Screening
Frances Glascoe, Adjunct Professor of Pediatrics, Vanderbilt University, East Berlin, Pennsylvania

b) Promising Practices and Lessons Learned from Utah
John Eichwald, CHARM Program Manager, Utah Department of Health, Salt Lake City, Utah

Gina Pola-Money, Parent and Project Director, FVRCFVSC, Family Voices of Utah, West Jordan, Utah

c) Parent Completed Screening Using the Ages and Stages Questionnaire

Jane Squires, Associate Professor, Center on Human Development, University of Oregon, Eugene, Oregon

d) Facilitated Open Discussion

e) Regional Breakout Session

3:45 pm – 5:00 pm

State Team Breakout Session

States discuss status of the state in terms of core performance measures discussed today (Affordable Health Insurance and Early and Continuous Screening); what are the state’s strengths, challenges, opportunities and barriers in these areas? Who are partners and who should be recruited to assist? For high priority areas, start considering how you would plan some action: What would it take to move the state forward towards achieving each goal; what should/can be done and by whom? What are the steps to be taken by this team when we go back to our state?

5:30 pm – 7:00 pm

Preview of Draft Prototype for Web-Based Data Resource Center for CSHCN

Reception and Discussion for all participants Sponsored by FACCT and Family Voices Cambridge Room

Wednesday, February 19, 2003
 

8:30 am – 10:00 am

Panel and Discussion:  Easy-to-Access Community-Based Service Systems

a) State Level Perspective on Community Based Service Systems
Karen Burstein, Associate Professor, Arizona State University, Tempe, Arizona

b) Promising Practices and Lessons Learned from Wolf Creek, Oregon
Michael McManus, Principal, Wolf Creek School, Wolf Creek, Oregon

c) Facilitated Open Discussion

d) Regional Breakout Session

10:15 am – 11:45 am

Panel and Discussion:

Services Necessary to Transition to Adulthood

a) National Perspective on Transition
John Reiss, Chief, Division of Policy and Program Affairs, Institute for Child Health Policy, Gainesville, Florida

Ceci Shapland, Co-Director, Healthy and Ready to Work National Center, Minneapolis, Minnesota

b) Promising Practices and Lessons Learned from Oregon
Eleanor Gil-Kashiwabara, Research Associate, Center on Self Determination, Oregon Health and Science University, Portland, Oregon

c) Young Adult Perspective
Elizabeth Guerrero, Project Assistant, National Youth Leadership Network, Portland, Oregon

d) Facilitated Open Discussion

e) Regional Breakout Session

1:15 pm – 2:15 pm

State Team Breakout Session

States discuss status of the state on the core performance measures discussed today (Community Based Services and Transition); what are the state’s strengths, challenges, opportunities and barriers in these areas? Who are partners and who should be recruited to assist? For the entire set of six core performance measures: Develop an action plan that addresses Title V legislative requirements, HP 2010 Objective 16.23 and the six core performance measures for CSHCN, as described in Solution III.C of “Delivering on The Promise”. What would it take to move the state forward towards achieving its highest priority goal(s);what should/can be done and by whom? What do we need from Federal agencies, organizations, etc.? What assistance do we need from national or regional resource centers? What other resources are available? What are the steps to be taken by this team when we go back to our state? What are our timelines and how will we know we are making progress?

2:30 pm – 3:30 pm

Mandatory State Promises – State Commitments

How is each state’s multi-agency state team committed to address Title V legislative requirements, HP 2010 Objective 16.23 and the six core performance measures for CSHCN, as described in Solution III.C of “Delivering on The Promise”.

What is each state’s capacity in terms of commitment and leadership? What is the potential for addressing all six performance measures and reducing barriers to community services and independent living for children and youth with special health care needs? What is needed (resources, support, etc.)? Address 2-5 things each state needs to implement HP 2010 Objective 16.23 and the six core performance measures for CSHCN from “Delivering On the Promise”.