Clinical Care Meeting

Spina Bifida Clinical Care Meeting

June 4-5, 2021 — All times are Eastern

Children’s Hospital of Philadelphia, Pennsylvania

Spina Bifida Association, Virginia

Download the schedule here

Friday, June 4, 2021
Welcome
11:00-11:15 am et

Sara Struwe, MPA 

President and CEO

Spina Bifida Association

Timothy Brei, MD

Medical Director

Spina Bifida Association 

Professor, Neurodevelopmental Pediatrics

Seattle Children’s Hospital

Introduction to the SpINA BIFIDA cLINICAL cARE mEETING  2021
11:15-11:30 AM ET

Sara Struwe

President and CEO

Spina Bifida Association

Announcement, SBA Clinic Care Partners
11:30-12:00 PM ET

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 ET

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 the importance of knowledge of the patient’s/family’s clinic experience
BREAK
12:45 – 1:00 PM ET
Achieving Desired Outcomes using a Group Visit Approach
1:00-1:45 PM ET

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 ET

Julie Yindra

Adult with Spina Bifida

Director, Student Access Services at Hofstra University

 

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

 

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 ET
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

 

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

 

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

Facilitators:  Kathryn Smith, RN, MN DrPH 

    Associate Professor Clinical Pediatrics

    Keck Scholl of Medicine of USC

    Children’s Hospital Los Angeles

William Walker, MD 

      Seattle Children’s Hospital

      Department of Pediatrics

      University of Washington School of Medicine

 

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

 

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

Andre Sam

SILVERTREE Special Needs Planning
Las Vegas, NV
andre.sam@silvertreesnp.com

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 ET
 
Adjourn  

Saturday June 5, 2021
Successes and Challenges
11:00-11:30 AM ET
MOMS Update
11:30-12:00 PM ET

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 and cognition
  • Review the physical functioning outcomes after fetal surgery in MOMS
  • Discuss post-MOMS interventions

 

BREAK
12:00-12:15 PM ET
Breakout Sessions, repeated
12:15-1:45 PM ET
  1. Clinic Practices to promote decision making, transition preparation, and how to ways to address challenges to developing self-sufficiency
  2. Spina Bifida Clinics, a Philosophy of Care-Creative Ways to Deliver; Guideline Implementation
  1. 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
1:45-2:30 PM ET

Eleanor Perfetto, PhD, MS

Executive Vice President of Strategic Initiatives

National Health Council

Closing Remarks
2:30-2:45 PM ET