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AUCD - Posters: Parent/Family Involvement, Support & Respite

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Monday, December 7, 2020 12:00 PM - 4:45 PM

Location: Virtual


Moving Towards the Horizon: Seeking to Create a Truly Diverse Cadre of LEND Family Discipline Fellows


Stephanie Coleman, BBA, Family Support Coordinator, Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

The disability community is filled with much diversity from race, sexual orientation, education level and geographical location. As such, LEND Family Discipline Fellows represent those voices and should mirror the look of the disability community. The LEND Family Discipline Network (LFDN) session will review current LENDs diversity protocols through review of an LFDN survey and discuss new ideas to recruit and retain such diversity within the programs at all levels.

Integration of the true experts: Building a family advisory council as part of the interdisciplinary system


Arin Gile, MA, Project Coordinator, University of Cincinnati UCE, UCEDD/LEND

The Family Advisory Council's (FAC) mission is to promote partnerships between families and professionals to enhance family-centered practices within The Division of Developmental and Behavioral Pediatrics (DDBP) at Cincinnati Children's Hospital. An emphasis on diversity and advocacy attracts families who wish to advocate for their children and all children with developmental disabilities. Future goals include involvement of self-advocates and collecting measurable data to expand upon diversity and improved outcomes.

Development of Shared Decision-making Tools for Project SCOPE: Supporting Children of the Opioid Epidemic


Elsie Bush, MS, OTR/L, University of Cincinnati UCE, UCEDD/LEND

Current research on prenatal opioid exposure supports the need for developmental monitoring due to heightened risk for developmental delays. This poster discusses the process used to develop shared decision-making tools for caregivers of children with prenatal opioid exposure and their early childhood medical providers. These tools are intended to help identify developmental concerns for children ages 3 to 5 years old, and allow referral to appropriate community supports.

Respite Employer Engagement Initiative - Reaching Caregivers Where They Work


Kim Falk, BSBA, Respite Employer Engagement Coordinator, Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND

Munroe-Meyer Institute at the University of Nebraska Medical Center and Nebraska's Department of Health and Human Services have been sharing Respite Resources with employers across the state for over 3 years. We are making it easier for working Caregivers to find resources they need directly from their employers. Data will be provided supporting the benefits for and increased respite awareness of working Caregivers.

Parent Perceptions of Early Childhood Special Education Supports at Parent, School, and System Levels


Catherine Gaspar, MA, Doctoral Student, Teachers College, Columbia University

The special education system is complicated for parents to navigate, especially in their child's first years receiving services. Parents have described difficulties and negative experiences during these early years, but little is known on how they perceive support offered by different levels of special education. In this study, parents rate their feelings of support from various components of the special education process: their school, school system, and other parents.

A Public Health Approach to Family Supports: Empowering Families of Children with Autism through the ECHO Model


Eric Moody, Ph.D., Director of Research and Evaluation, Wyoming Institute for Disabilities, UCEDD

Children with autism spectrum disorder (ASD) often receive many direct services designed to improve their clinical outcomes. However, this approach often ignores the contextual factors that are likely to impact the effectiveness of those interventions. We describe an innovative program, ECHO for Families, as an example of how families can be empowered to support their children, and how this improves family well-being.

Maine LEND Parents As Experts Conference


Joanna Reidy, Former Maine LEND Family Trainee, Maine LEND Program - University of New England

This presentation will describe a Conference for and by parents which focused on empowering parents. Through this event, parents and caregivers were given advocacy tips and guidance on how to be an equal member of their child�s medical and educational teams.��Parents were encouraged to not simply be a member of their child's team, but the leader.�This was led by the Maine LEND Family Trainee but could apply to all disciplines.

LEND Trainees: Experience in Supporting Moms2B Groups in Central Ohio


Margaret Rosencrans, PhD, postdoctoral scholar, The Nisonger Center, UCEDD/LEND

Moms2B provides weekly education and support sessions to high-risk pregnant women and mothers of children under the age of one to promote healthier lifestyle choices and link them with social support resources. Through partnership between Moms2B and Nisonger, LEND trainees attended weekly 2-hour Moms2B sessions. Trainees gained experience working with this population and observed parents' perspectives of young children in extreme poverty, some of whom have disabilities themselves.

Sibling Mentoring and Peer Support for Adult Brothers and Sisters of People with Intellectual and Developmental Disabilities


Katie ARnold, MS, Director of Community Education, Institute on Disability & Human Development, UCEDD/LEND

Siblings of people with IDD need support, especially as adults when greater caregiving roles transition to them. The Sib2Sib Mentoring Program trains Sibling Mentors and matches them with Mentee Siblings for peer support. This poster will describe the Sib2Sib mentoring program, including how it was developed and ways it is being adapted. Outcomes for siblings will be shared for both the Sibling Mentor and Mentee Sibling.