URLEND Leadership Project:
Experiences & Reflections
HELEN AOKI
LEYLA FAIZE
MARYANNE JACONIS
BETHANY RIGLES
APRIL 20, 2012
A Sexual Education Timeline
for Parents of Children with Disabilities
 Project Description: To help parents of children with
special health care needs provide appropriate sexual
education for their children.
 Methodology
 Exploratory project
 Worked with Healthy Sexuality Parents’ Group in SLC
Development of the Timeline
 Generated a list of topics dealing with discussing
sexuality


Parents from the group chose the top 5 topics that were most
interesting to them
Our group took 4 of the top 5 topics chosen by parents to
research further
 Created the timeline
 Topics were addressed chronologically, with notion that
parents could access information based on the developmental
age of their child
Helen’s Chapter
 When and how to talk about sexuality
 Sexuality is a natural and normal part of human life
 Discussions about sexuality should begin early
 Remain open to questions and answer matter-of-factly
 Children will ask questions as they get older
Answer truthfully
 Create a safe place for your child to ask questions


Teach your child to respect self and others
Maryanne’s Chapter
 Specialized Topic: Masturbation

One of the most controversial topics related to sexuality education
 Normal part of growth and development

Similar to learning a language, playing with peers, and receiving
proper nutrition
 Learning appropriate public and private behaviors

Children do not incidentally learn society’s rules about public and
private behaviors
 What are effective interventions and support strategies

How to shape behavior
Bethany’s Chapter
 Discussing public vs. private sexual behaviors
 Distinguishing between public and private places and
behaviors should start at an early age.
 Help kids develop personal boundaries.
 Avoid harsh reactions to child’s sexual exploration.
 Type and severity of disability affect child’s ability to
understand concepts of “public” and “private.”
Leyla’s Chapter
Sexual Victimization/Abuse
 Sexual abuse in female adolescents with physical
disabilities is twice as much as their peers with no
physical disabilities
 General Safety
 Symptoms that may suggest sexual abuse
 Perpetrators behaviors
 Intellectual disabilities and sexual offending
behaviors
Healthy Sexuality Parents’ Group
 Experiences, thoughts, and reflections
Collaborating with professionals from different disciplines from a
distance
 Doing research based on the clients’ needs and feedback

 Having parent perspective kept our project family-
centered
Project Results & Conclusions
 Parents felt information was clear and concise and
used language that was non-stigmatizing
 Areas for improvement:
 Include case studies
 Add more disability specific information
 Address same sex relationships
 Plan to have URLEND group next year develop
timeline further and disburse information
Maryanne’s Reflections
 Well-balanced URLEND experience
 Evidence-based educational component
 Clinical experience
 Most significant learning experience
 Reciprocal nature of didactic and clinical experience
 Thought provoking conversation during didactic sessions
 Leadership Project
 Practicing effective communication skills
 Establishing expectations & following through
Helen’s Reflections
 URLEND seminars
 Wide variety of topics and speakers
 Created awareness of multiple disciplines
 URLEND clinics
 Explore outside your discipline
 Confirm time commitment and patient load prior to clinic
 URLEND leadership project
 Individual strengths are important
 Group dynamics will change throughout
Leyla’s Reflections
 Include variety of thoughts and opinions on
URLEND lectures
o Evidence based practice and practice based evidence
o Developmental and behavioral approach to ASD treatment
 Promote critical thinking in leadership training
program
 Promote interdisciplinary collaboration and
teamwork
 Endorse cultural sensitivity and awareness
Bethany’s Reflections
 Combination of clinical and seminar experiences was
very effective

Interest in developing more interdisciplinary clinics in
Montana, especially for ASD.
 Leadership Group
 Great leadership experience to work with an interdisciplinary
team over a distance.
 Discovered new means of communication.
 Greatly enjoyed working with parent group.
Suggested Change for URLEND
 Follow-up with parents/families participating in PDCs.

As part of each PDC team, one URLEND trainee would take
responsibility for following-up with the family that
participated.
Trainee would enquire about how the experience was, what was
helpful, what aspects could be improved on, etc.
 Trainee would share feedback with the group and/or all URLEND
trainees.


This change would enhance leadership skills through:
Increased ability for self-reflection about one’s role in the PDC
 Increase communication skills both with families and other
trainees
 Promotion of family-centered care

Acknowledgments
This project would not have been possible without the
support and insight of our faculty mentors and parent
participants. We would like to thank Dr. Derezotes, Dr.
Peterson, Dr. Terashima, Gina Pola-Money, and Jodi
Hansen for their guidance and support on this project.
We would also like to thank the Healthy Sexuality
Parents’ group in Salt Lake City for including us in their
discussions, providing insight and feedback throughout
our project, and for serving as a constant reminder that
personal knowledge and experience are invaluable when
working with children with special needs and their
families.