Clinical Care Meeting

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Spina Bifida Clinical Care Meeting June 4-5, 2021

Children’s Hospital of Philadelphia, Pennsylvania

Spina Bifida Association, Virginia

All times are in Eastern Standard Time

Friday June 4, 2021

Welcome                                                                                                       11:00 – 11:05 AM

Timothy Brei, MD
Medical Director
Spina Bifida Association
Professor, Neurodevelopmental Pediatrics
Seattle Children’s Hospital
Adult with Spina Bifida

SBA Updates                                                                                    11:05 – 11:30AM

Sara Struwe
President and CEO
Spina Bifida Association

Announcement, SBA Clinic Care Partners                                        11:30 – 12:00 PM
2021 Application Process
Partnership Update/Renewal Process

Judy Thibadeau, RN MN
Director of Research and Services
Spina Bifida Association

Improving How We Care                                                                            12:00 – 12:45 PM
The Family/Adult Experience

Facilitator, Jason Woodward, MD
Cincinnati Children’s Hospital Medical Center
Division of Adolescent and Transition Medicine

Description: Panel of adults and parents expressing how their clinic experiences have been helpful; how they’ve been challenging

Objectives:

  • Describe SB clinic processes/practices that support families and adults to achieve desired outcomes
  • Describe SB clinic processes/practices that inhibit the achievement of desired outcomes
  • Demonstrate understanding of importance of Knowledge of patient’s/family’s clinic experience

Break                                                                                                                   12:45 – 1:00 PM

Achieving Desired Outcomes using a Group Visit Approach            1:00 – 1:45 PM

Nienke Dosa, MD
 Professor of Pediatrics
Center for Development, Behavior and Genetics
Upstate Healthcare Center

Description: Using Group Visits in a Spina Bifida Clinic

Objectives:

  • List topics that may benefit from the group visit format in a Spina Bifida Clinic
  • Describe how group visits can facilitate goal directed behavior
  • Describe the experience in Syracuse using the group visit format to yield more interest in activities that promote fitness

The Neurocognitive Profile in Spina Bifida & Implications on Care 1:45 – 2:30 PM

Julie Yindra, M.Ed.
Director, Student Access Services, Hofstra University, New York
Adult with Spina Bifida

Jane Schreiber, PhD
 Pediatric Neuropsychologist
Department of Child & Adolescent Psychiatry and Behavioral Sciences
The Children’s Hospital of Philadelphia

Timothy Brei, MD
Medical Director
Spina Bifida Association
Professor, Neurodevelopmental Pediatrics
Seattle Children’s Hospital
Adult with Spina Bifida

Description: Presentation about neuropsychology in Spina Bifida

Discussion with neuropsychologist and adults with Spina Bifida describing their life experiences that were/are challenging because of the way their brains function

Objectives:

  • Describe characteristics of the Spina Bifida brain
  • Describe approaches to successfully navigate life with the challenges of the Spina Bifida brain

Breakout Sessions                                                                                   2:30 – 4:00 PM

  1. Clinic practices to promote decision making, transition preparation, and ways to address challenges to developing self-sufficiency

Facilitator:

Ellen Fremion, MD
Assistant Professor of Internal Medicine and Pediatrics
Baylor College of Medicine Texas Medical Center

Richard Adams, MD
Professor and Division Director of Developmental Behavioral Pediatrics
University of Texas Southwestern Medical Center
Medical Director of Pediatric Developmental Disabilities
Texas Scottish Rite Hospital for Children

 Betsy Hopson, MSHA
Director and Coordinator of the Spina Bifida Program
Children’s of Alabama
University of Alabama at Birmingham

Shannon Bevans, MSW
Adult Transition Care Coordinator – Spina Bifida
Orlando Health Arnold Palmer Hospital for Children

Description: Join this panel session for opportunity to discuss tools and tips to facilitate the development of decision making in people with Spina Bifida beginning at a young age; how to address the challenges to develop self-sufficiency; and examples of the use of transition readiness data to support the transition preparation effort

  1. Spina Bifida Clinics, a Philosophy of Care-Creative Ways to Deliver; Guideline Implementation

Facilitators:

Kathryn Smith, RN, MN DrPH
Associate Professor Clinical Pediatrics Keck School of Medicine of USC
Children’s Hospital Los Angeles

William Walker, MD
Robert A. Aldrich Professor of Pediatrics
University of Washington School of Medicine
Chief, Division of Developmental Medicine,
Seattle Children’s Hospital

Description: Join this panel session for a discussion of the different ways Spina Bifida care can be delivered, including financial considerations, and challenges to implementing the Guidelines for the Care of People with Spina Bifida with examples of approaches that have proven successful

  1. Legal issues of “adulting” related to medical care. Don’t be afraid to plan; be afraid if you don’t plan…

Andre Sam, CRPC®, APMA
SilverState Disability & Special Needs Planning
Las Vegas, NV
asam@projectdsnp.com
(801)844-9684

Description: Join this session for an informative and educational workshop for both health care professionals who work with, as well as family members who have loved ones of all ages with Spina Bifida or any other physical and/or intellectual disabilities or special needs. The topics covered in this workshop include guardianship & alternatives to guardianship, wills, family trusts, special needs trusts, Microboards, SSI, Social Security Retirement/Survivor Benefits, Social Security Disability, Medicaid/Medicare, ABLE Accounts, budget and transition planning. For health care professionals, this workshop will help you understand the basics of planning for yourselves and your families, and explain why these planning aspects are important for families to be aware of and help you identify where you can bring these topics up in conversation in your relationships with families. For parents and caregivers, this workshop will explain why these planning aspects are important to have and how they complement each other in a plan designed to protect yourself, your family and/or your loved ones’ current and future quality of care and life.

Reception and Awards                                                                       4:00 – 4:30 PM

Adjourn

Spina Bifida Care at Children’s Hospital of Philadelphia       4:35 – 4:40 PM

            Virtual tour of Children’s Hospital of Philadelphia.

Debrief Q&A for nonclinical community members                             4:45 PM

Judy Thibadeau, RN, MN
National Director of Research & Services

Do you have questions about the day? Join Judy Thibadeau, RN, MN, National Director of Research & Services at SBA, for a debrief Q&A of the day for nonclinical community members.

Saturday June 5, 2021

Successes and Challenges                                                                 11:00 – 11:30 AM
          Danielle Nicholson, DO

MOMS Update                                                                                 11:30 – 12:00PM

Amy Houtrow, MD, PhD, MPH
Professor of Physical Medicine and Rehabilitation and Pediatrics
Endowed Chair for Pediatric Rehabilitation Medicine
UPMC Department of Physical Medicine and Rehabilitation
Division Chief of Pediatric Rehabilitation Medicine
UPMC Children’s Hospital of Pittsburgh

  • Understand the impact of fetal surgery in the MOMS trial on hydrocephalus cognition
  • Review the physical functioning outcomes after fetal surgery in MOMS
  • Discuss post-MOMS interventions

SBA Catheter Survey                                                                          12:00 – 12:30 PM

Dawne Widener-Burrows
Widener Research, LLC
Maryellen Kelly, DNP
Duke Health

Break                                                                                                                12:30 – 12:45 PM

Breakout Sessions, repeated                                                                     12:45 – 2:15 PM

  1. Clinic Practices to promote decision making, transition preparation, and how to address challenges to developing self-sufficiency
  2. Spina Bifida Clinics, a Philosophy of Care-Creative Ways to Deliver; Guideline Implementation
  3. Legal issues of “adulting” related to medical care

Don’t be afraid to plan; be afraid if you don’t plan

Patient Centered Care, Patient Engagement                                          2:15 – 2:45PM

Eleanor Perfetto, PhD, MS
Executive Vice President of Strategic Initiatives
National Health Council

Closing Remarks                                                                                          2:45 – 3:00 PM

Sara Struwe
President and CEO
Spina Bifida Association

Debrief Q&A for nonclinical community members                              3:15 PM

Judy Thibadeau, RN, MN
National Director of Research & Services

Do you have questions about the day? Join Judy Thibadeau, RN, MN, National Director of Research & Services at SBA, for a debrief Q&A of the day for nonclinical community members.