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AUCD - Poster Symposium 9: Family Involvement, Parenting

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Monday, November 12, 2018 3:30 PM - 4:45 PM

Location: Congressional C

Session Description

All posters for the AUCD Conference will be presented throughout Monday and Tuesday (this is new in 2018) in a series of Poster Symposia that run at the same time as concurrent sessions. During these 75 minute poster symposia, 12-15 posters on a similar theme will be grouped together in a room. Posters will be displayed on large boards and have a table underneath for accompanying materials. The session will be introduced by a moderator, poster authors will be asked to provide a very brief introduction of their poster, and then attendees will be free to move about the room to speak with poster presenters directly for the remainder of the session. Attendees are also welcome to move between symposia rooms and view posters on other topics. Conference posters submitted ahead of time are also avilable electronically in the conference app and linked below.

 


 

 




Presenters

Community Education Workshops Aimed at Reducing Health Disparities for the Autism Spectrum Disorder Population in Alabama
Elizabeth Griffith, MSW , Medical Social Worker and Director of the UAB RAN , Civitan International Research Center, UCEDD/LEND
Christian Clesi, MA, Birmingham, AL, United States, AL - Civitan International Research Center, UCEDD/LEND;
Sarah O'Kelley, PhD, Birmingham, AL, United States, AL - Civitan International Research Center, UCEDD/LEND;
Richard Rector, PhD, Parent Advocate and Birmingham-Southern College, Birmingham, AL, United States;
Justin Schwartz, MD, Children's of Alabama, Birmingham, AL, United States, AL - Civitan International Research Center, UCEDD/LEND;
Fred Biasini, PhD, Birmingham, AL, United States, AL - Civitan International Research Center, UCEDD/LEND
The UAB Regional Autism Network provides free, monthly Community Education Workshops to educate families and providers on specific issues related to caring for individuals with Autism Spectrum Disorder (ASD). These workshops seek to connect underserved populations experiencing socioeconomic and psychosocial barriers to care. The workshops present evidence-based intervention strategies to caregivers and providers across the state of Alabama in an effort to increase knowledge and provide translatable skills.

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Developmental Referral and Screening Guide for Southern Arizona-Creating a local, one-stop resource and referral guide.
Cheyenne Cody Da Rosa, M.Ed., , The University of Arizona, LEND
Briana Seward, B.A., Tucson, AZ, United States, AZ - The University of Arizona, LEND;
Victoria Smith, MSN, Tucson, AZ, United States, AZ - The University of Arizona, LEND;

Navigating a diagnosis of autism can be confusing and overwhelming. Families and professionals alike struggle to locate the appropriate resources within their local communities. The Information and Referral Committee of the Autism Society of Southern Arizona sought to provide a solution to this problem by developing a one-stop resource and referral website directory for Southern Arizona that also includes links to screening tools and other national resources.

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Exploring Text-Based Peer Support in Parent to Parent Networks
Robin Dodds, PhD, Assistant Professor, USC, Childrens Hospital, UCEDD/LEND
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Traditional peer support programs have relied on telephone and face-to-face interactions to provide informational and emotional support, however the use of text-based platforms has become increasingly common. This research explores text-based support provided by peers in Parent to Parent networks as a first step in a multi-tiered project to determine the efficacy of text-based supports and the development of best practices for their use in peer support programs.


Parent Hopes and Worries: National Survey in Turbulent Times
Karen Bonuck, PhD, Professor, Rose F. Kennedy Center, UCEDD/LEND
Natalie Adler, PhD, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;
Kathleen McGrath, MSW, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;
Akilah Collins-Anderson, MPH, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;

This national survey assessed parent ratings of hopes and optimism for their children. Items included concerns about discrimination based on physical health and learning disabilities.

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Working with a Support Group to Increase Inclusion and Belonging: A collaboration of UCCEDD and the OKI-RTS Support Group
Celia Schloemer, MS, Family Support Coordinator , University of Cincinnati UCE, UCEDD/LEND
Ashley Sabido, Grad Student, UC UCEDD, Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;
Ilka Riddle, PhD, UC UCEDD, Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;

This poster illustrates how the University of Cincinnati UCEDD and the Rubinstein-Taybi Syndrome Support Group worked together to move from quarterly meetings at the hospital for medical information to a support group that is active in the community, enjoys activities in inclusive settings and in which members engage in research and information dissemination to other families. Support group members are empowered and feel a sense of belonging.

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Interactions of LEND trainees with the Family Navigator Program: Connecting Families to Services in Their Communities.
Allison Kumnick, B.A. Biochemistry, , Mailman Center for Child Development, UCEDD/LEND
Nancy Torres, Miami, FL, FL - Mailman Center for Child Development, UCEDD/LEND;
Maite Schenker, PhD, Miami, FL, FL - Mailman Center for Child Development, UCEDD/LEND;
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The Family Navigator program was designed to foster a relationship between "navigators" and caregivers of children with disabilities, in order to disseminate knowledge on services available throughout the community by prioritizing the specific needs of each child. Trainees of the LEND program have partnered with the Family Navigator program in various capacities, expanding both the curriculum of the LEND program and the resources of the Family Navigator team.

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Understanding and Encouraging Health-Related Quality of Life in Parents of Youth with Autism
Laura Beamer, Ph.D. , Clinical Psychologist , Center for Disability Resources, UCEDD/LEND
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If we want to improve the lives of children with ASD we have to consider the health and well-being of parents and caregivers. This study sought out to identify psychological factors that predict health related quality of life in parents of youth with ASD and give voice to the daily lived experience of these individuals by using a mixed-methods approach including both a quantitative survey and qualitative interviews.

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Implementation of a caregiver workshop series through a hybrid in-person and teleconferenced training model
Whitney Loring, PsyD, , Vanderbilt University, UCEDD/LEND
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This concurrent session focuses on a free caregiver training model, which includes a live foundational workshop or nationally livestreamed option of the workshop, and brief online training modules. This model is designed to support caregivers through various modalities to increase overall reach and impact. The session will delineate how this model began and has grown over time to address growing needs using telehealth and online learning initiatives.

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My understanding of Special Education: The Initial Parent Experience
Amanda Johnson, Ed.D (ABD), Director Special Services Mariposa CUSD/COE, UC Davis at the MIND Institute, UCEDD/LEND
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Parents are integral members of the special education Individual Education Plan (IEP) team. Listen to the stories of parents as they tried to navigate their way through the initial IEP experiences. Hear who supported their understanding along the way. Learn how parents perceived their role during their journey. Feel the emotions that parents shared feeling during their experiences. Find out if parents knew their procedural safeguard rights.


Health Care Transition: Perspectives of Adolescents and Young Adults with Autism and Their Parents
Julie Christensen, LMSW, PhD, Director, Center for Disabilities and Development, UCEDD/LEND
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Little information exists in current literature on the perspectives of youth with Autism Spectrum Disorder (ASD) and families related to youth self-management of their health care. The current study describes the specific points of tension between parent and child that have the potential to impact desired outcomes. Understanding these factors may inform the approach to clinical intervention aimed at encouraging autonomy and personal responsibility.


Parent Practitioner Partnering: Collaborating with families of children with developmental disabilities to establish continuous family-centered care.
Daniella Soba, OTR/L, Occupational Therapist, Rose F. Kennedy Center, UCEDD/LEND
Elizabeth Ridgway, OTD, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;
Carol Terilli, DPT, Bronx, NY, United States;
Timothy Conly, OTR, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;
Kadine Walfall, DPT, Bronx, NY, United States;

Family-centered care (FCC) is a vital approach to healthcare for families of children with developmental disabilities due to the evolving needs of the family as the child develops. Occupational and physical therapists at an outpatient developmental and rehabilitation center used various methods to integrate the family voice into program development and delivery of care. This presentation shares with others the methods of sustaining FCC as an ongoing and cyclical process.


Achieving Inclusive Communities Through Social Media
Joe La Belle, BA Criminology Florida State University , Director of Programs FND, Family Network on Disabilites
Eliana Tardio, MBA, Family Network on Disabilities, Dunedin, FL, United States;

FND Social develops and implements social media strategies with the goal of achieving inclusive communities. Over the last year, we have been able to share these strategies with more than 25 OSEP-funded Part D Programs. We will be teaching in a hands-on way how to enhance your community reach through social media, whether it�s families, students, or other professionals. Social media is no longer optional; it�s the new standard.


Family Support: Strategic Research, Promising Practices, and Policy Implications
Katie Arnold, M.S., Director of Community Education, Institute on Disability & Human Development, UCEDD/LEND
Sandy Magana, PhD, Austin, TX, United States, TX - Center on Disability and Development, UCEDD;
Tamar Heller, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
Joe Caldwell, PhD, National Council on Aging, Washington, DC, United States;
Brian Grossman, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
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The Family Support Research and Training Center (FSRTC), funded by NIDILRR, engages family support stakeholders across disability and aging and across the life course to investigate the needs of family caregivers. Four projects will be discussed including: development of a strategic research plan, identifying promising practices, an intervention for Latina mothers of children with autism, and highlights from caregiving and supports for older adults with IDD and dementia.


Successfully Raising a Child with Autism in a Rural State: Insights from an Appreciative Inquiry
Eric Moody, PhD, , Wyoming Institute for Disabilities, UCEDD
Reshmi Singh, PhD, Laramie, WY, United States, WY - Wyoming Institute for Disabilities, UCEDD;
Bethany Rigles, PhD, Laramie, WY, United States, WY - Wyoming Institute for Disabilities, UCEDD;
Elyssa Smith, M.A., Larmie, WY, United States;

This proposal focuses on the findings from a qualitative investigation of parents of children with autism spectrum disorders (ASD) living in a rural state. An Appreciate Inquiry (AI) design was used to inquire about parents� success stories while raising a child with ASD. Implications for practitioners, families, and communities related to rural applications will be discussed.


Social, emotional, and educational impacts on the siblings of children with disabilities.
Jessica Rotondo, BS, Project HEAL Law Trainee, Kennedy Krieger Institute, UCEDD/LEND
Alyssa Navarrete, JD, Baltimore, MD, United States, MD - Kennedy Krieger Institute, UCEDD/LEND;
Maureen van Stone, JD, MS, Baltimore, MD, United States, MD - Kennedy Krieger Institute, UCEDD/LEND;

This original research will analyze the social, emotional, and educational impacts on individuals raised with a sibling with a disability. The authors examine the impact on school attendance and performance, extracurricular activities, social relationships, educational achievements, and family dynamics.


Parent Workshop: An Opportunity for Empowerment, Feedback, and Community Inclusion
Diana Rodriguez, LMSW, Social Worker, Diversity Coordinator , Rose F. Kennedy Center, UCEDD/LEND
Tammy Fried, LCSW, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;
Kathleen McGrath, MSW, Bronx, NY, United States, NY - Rose F. Kennedy Center, UCEDD/LEND;

This presentation discusses the Parent Workshop, an annual event held at Montefiore Medical Center, The University Hospital for Albert Einstein College of Medicine. This workshop was established with the intention of providing support and education to parents, reducing social isolation, and including parents as stakeholders in program development. Feedback from the 2018 Parent Workshop and plans for incorporating parent input into program development are discussed.

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Prioritizing Inclusion of Parent-to-Parent Support in Care Coordination
Sarah Swanson, MPH, Family Support Community Outreach Specialist, Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND
Mandi Reinders, AAS, (Family member), Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;
Jennifer Hansen, AA, 2018 UCEDD Family Trainee, Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;
Becky Skoglund, M.A., Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;

The social determinants of health (access to insurance, education, etc.) impact individuals� quality of life and influence health outcomes. Children with disabilities and their families frequently face barriers in these areas. The Family Care Enhancement Project places �Parent Navigators�-parents of children with disabilities in clinics to offer mentorship and help connect families to community resources. This poster will provide satisfaction data from families, clinicians and community partners.

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