rapid-fire poster presentations
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AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid-FirePoster Presentations
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid Fire Presentations
• Full E-presentations available for viewing at: – Health Systems and Services:
https://vimeo.com/user/135941443/folder/6124703– Community-based Lifestyle Interventions:
https://vimeo.com/user/135941443/folder/6124719
• Rapid Fire Presenters will provide short overview
• Faculty facilitator, peers, and audience encouraged to submit comments and questions for each presenter
• Presentations and Q&A will be timed– A transition slide will alert presenter at 30 seconds left in Q&A
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid Fire Presentations
• All participants will have video and audio capabilities– Please keep video/audio off unless presenting or asking question– Q&A: chat box or raise hand to ask question
• Please self-select your desired breakout room– 1 minute warning before rooms close
• 5-minute break to follow, return by 3:55pm ET / 12:55pm PT
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid Fire Presentations - Breakouts
Breakout Room AHealth Systems and Services
Breakout Room BCommunity-based Lifestyle Interventions
Faculty Facilitator: Carrie Coffield, PhD Faculty Facilitator: Derek Nord, PhD
Presenter: Jessica Kinard, PhD, CCC-SLP Presenter: Ida Barresi, MS, CCC-SLP
Presenter: Denise Nunez, MD Presenter: Renee Jamison, PhD
Presenter: Sandra B. Vanegas, PhD Presenter: Sheida Raley, PhD
Presenter: Sahana Shankar, BS
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid-Fire Presentations
Breakout AHealth Systems & Services
Evaluating a remote assessment for Hispanic infants and toddlers at high likelihood for developing autism
Jessica Kinard, PhD CCC-SLPCarolina Institute for Developmental DisabilitiesUniversity of North Carolina at Chapel Hill
Katherine C. Okoniewsky, PhDRTI International
AIR-P Presentation, November 2021
Lack of Spanish-speaking providers & measuresLimited access to information
Transportation issuesInflexible jobs
Childcare
Barriers to autism diagnosis in Latinx community
(Harstad et al., 2013; Zuckerman et al., 2014)
(Kelleher et al., 2020)
Aims of Pilot Study 1
Aim 1: Translate and adapt PANDABox for Hispanic infants and children at high likelihood for developmental disabilities
Aim 2: Assess the acceptability, feasibility, and validity of PANDABoxfor infant siblings of children with autism in Hispanic families
Aim 1: Cultural Adaptation & Translation
Interviews
Revise with team
Interviews
(DuBay & Watson, 2019; DuBay et al., 2021)This Photo by Unknown Author is licensed under CC BY-SA
• Participants: 25 Spanish-speaking families with 3 – 24-month infant sibling of child with autism
• Day before visit: 16-hour LENA recording
• Day of visit: Examiner calls parent and walks through PANDABox activities
• Within a week: Validation assessments• Exit interview: Family’s perspective on
PANDABox
Aim 2: Participants & Schedule
This Photo by Unknown Author is licensed under CC BY
Aims of Pilot Study 2 (AIR-P)
Aim 1: Assess the acceptability, feasibility, and validity of PANDABoxfor Hispanic families identified from community screenings
Aim 2: Explore extent to which acceptability, feasibility, and validity varies among families identified from community screening vs. younger siblings
This Photo by Unknown Author is licensed under CC BY-NC-ND
Thank you!¡Gracias!
JESSICA.KINARD@CIDD.UNC.EDU
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
The Impact of COVID-19 on Families of Children with Neurodevelopmental DisabilitiesDenise M. Nunez MD, MPHUniversity of California Los AngelesDepartment of Preventive Medicine
Purpose• Investigate impact of global
pandemic on families of children with neurodevelopmental disabilities
Survey Structure
• Demographics• Service Access• Family Scales• COVID-19 Behaviors & Impacts
Variable N (%)(n=54)
Relationship to child/ren with developmental disabilityParent 52 (96.3%)
Children with special needs in household [median (min, max)]
1 (1,7)
Household size [median (min, max)] 4 (1,10)Hispanic 18 (34%)Race
White 32 (60.4%)Asian American, Native Hawaiian or Pacific Islander 8 (15.1%)Black or African American 4 (7.5%)Native American or Alaska native 1 (1.9%)
Highest degree High school diploma or GED 2 (3.8%)Associates/Bachelor’s degree 28 (52.8%)Master’s degree or higher 22 (41.5%)
Marital statusMarried 41 (77.4%)Single 6 (11.3%)Divorced 5 (9.4%)Separated 1 (1.9%)
Demographics
Variable N (%)(n=54)
Age of child [median (min, max)] 9 (6, 13)Male sex 38 (70.4)Diagnosis
ASD 23 (42.6)ADD/ADHD 20 (37.0)Learning disability 9 (16.7)Intellectual disability 11 (20.4)Behavioral problems 14 (25.9)
Individualized Education Plan 37 (68.5)Class delivery
Remote 38 (76.0)In-person 3 (6.0)Hybrid 5 (10.0)
School-based servicesSpeech and language 39 (81.3)Counseling services 15 (41.7)Special classes 12 (36.4)Behavioral interventions 12 (31.6)
Child-level information
Variable N (%)(n=35)
Person in household diagnosed with COVID-19 8 (22.8%)Knowledge of death from COVID-19 12 (35.2%)
Impact due to COVID-19Mental issues 22 (64.7%)Physical issues 20 (58.8%)Finances issues 14 (41.2%)Childcare issues 18 (52.9%)Child Behavior difficulties 24 (70.6%)Relationship difficulties 12 (38.7%)
ActionsAdvocacy/Involvement 13 (37.1%)Would you consider vaccinating your child
Yes 27 (77.1%)No 2 (5.7%)Unsure 6 (17.1%)
Emergency Preparedness Plan 19 (54.3%)Accounts for child with special needs 17 (48.6%)Updated due to pandemic 14 (40.1%)
Impacts of COVID -19
Potential Family
Unit Predictors
• Married, divorced, separated families appeared to have more difficulties compared to single (p=0.12)
• Work from home option did not have an effect (p=0.66)
• Household income appeared to have an effect (p=0.06)
Potential Family
Unit Predictors
Family Environment Scale
• Moral-religious (p<0.01)• Organization (p= 0.01)• Cohesion (p=0.12)• Expressiveness (p=0.05)
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Impact of Social Determinants of Health on the Physical Health of Latino Children with Autism
Sandra B. Vanegas, Texas State UniversitySandy Magaña, University of Texas at Austin
Dr. Sandra Vanegas’ presentation was shown in video format, which is available on the YouTube recording and Vimeo.
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Questions
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Rapid-Fire Presentations
Breakout BCommunity-based Lifestyle Interventions
cham.org
Feeding Therapy Program in Children with Autism Spectrum Disorder and
Feeding Problems
AIR-P Research Day 2021Presenter: Ida Barresi M.A., CCC-SLP
cham.org
Full Author List, Affiliations, & Disclosures:• Authors: Ida Barresi M.A., CCC-SLP, Maria
Valicenti-McDermott M.D., M.S., Andrea Deisher RN, B.S.N., M.P.H., Lisa Shulman, M.D., MinnaPark M.S., CCC-SLP, Katherine Ingrasci M.S., CCC-SLP
• Affiliations: RFK Children’s Evaluation andRehabilitation Center, Children’s Hospital at Montefiore Medical Center, Albert EinsteinCollege of Medicine, Bronx, NY
• Disclosures: We have no financial disclosures 30
cham.org
Background• Feeding difficulties are quite prevalent
among children with developmental disabilities
• The odds of having a feeding problem increase by 5 times in children diagnosed with autism spectrum disorders .
• Not many programs available; long wait times
31
cham.org
Background
• Lack of intervention impacts physical health:–Dental (Leiva Garcia et al., 2019)–Malnutrition (Tang B et al., 2011)–Nutrient Intake: specific deficits
with lower intake of calcium and protein (Sharp et al., 2013)
32
cham.org
Feeding Characteristics in children with Autism• Food refusal/strong food dislikes• Rigid food demands• Restrictive dietary variety• Delayed oral motor skill
development• Sensitive to the taste, smell, color
and texture of foods 33
cham.org
Feeding Intervention Model• Multidisciplinary(Speech Pathologist, Occupational Therapist,
Nutritionist, Dentist)• Weekly interventions over a 12-week period with emphasis on
parent-professional collaboration.• 1x/weekly for a 45-minute feeding therapy session .• Child-focused• Parent-focused
34
cham.org
Objectives of the study1) To describe the intervention2)To examine the feasibility of a 12-week outpatient feeding intervention that uses a child-lead systematic desensitization approach and parent education to help create positive mealtime experiences.Intervention is designed to improve physical health including oral motor skills, oral hygiene, and nutritional food intake.
35
cham.org
Feeding intervention focuses on:• Parent education• Sensory experiences• Oral motor skills• Meal plans• Introduction of new foods• Diet maintenance• Oral hygiene and toothbrushing• Systematic desensitization approachIn order to improve nutrition, oral health, and prevent the need for invasive medical procedures such as a g-tube. 36
cham.org
Results• From March 2021 to October 2021, we
have enrolled 5 patients, with autism and feeding disorders in this program, 2 completed the 12 weeks, and the goal is to enroll 5 more.
• Attendance to the program was 83%.• Based on performance rubric, there was
an improvement in goals developed by the therapist.
37
cham.org
Conclusions• This intervention appears to be feasible, as attendance
was above 80%.• Study is ongoing and preliminary results are promising
but the sample is small.• Few patients have enrolled and completed the 12-week
series at this time; progress was noted across therapy goals overall.
38
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Enhancing social-emotional health in adolescent girls with autism:
Community participation through the GNO-Teen intervention program.
Program Team: T. Rene Jamison, Jessica Schuttler, Mallorey Beckloff, Nicole Crump, & Hannah
Adams KS LEND and University of Kansas Medical Center
What makes GNO unique? Targets adolescent females w/ ASD!
Social skills & self care curriculum unique to girls/women.
Occurs within authentic social and self-care age relevant activities and settings.
“Peer mediated”
Utilizes empirically based strategies
Focuses on strengths & empowerment.
Establishes partnerships w/ community
Buy in!!!!!
Community Wide Impact
Positive Outcomes
“these girl’s nights just keep getting better and better” - GNO participant
“The mothers’ stories are so familiar that they could be my own.” – GNO Parent
“If I didn’t hear about GNO, I would say it was impossible to find groups for girls on the spectrum.” -GNO Parent
www.kumc.edu/cchd/gno
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
Self-Advocacy and Goal Attainment (SAGA) ProjectCommunity-Based Self-Determination Intervention to Enhance Goal Setting and Attainment Targeting Employment, Postsecondary Education, Community Participation, and Physical Health Outcomes
KU Center on Developmental Disabilities© 2021 Kansas University Center on Developmental Disabilities
SAGA Project OverviewAIR-P Scholars project funded for 2021-2022
Project goal: Exploring the impact of the Self- Determined Learning Model of Instruction (SDLMI) used in community settings on:
1.Self-determination (using self- and family- report measures)
2.Executive processes (discrete measures of inhibitory control and behavioralflexibility)
3.Health (self-report measures of physical and mental health)
4.Postschool outcomes (postsecondary education, employment)
Phase 1: Set a Goal
Phase 2: Take Action
Phase 3: Adjust Goal or Plan
What ismy goal?
What ismy plan?
What haveI learned?
KU Center on Developmental Disabilities
THANK YOU!
• For more information, email us at: sagaproject@ku.edu
• Visit our website and social media:
@ksucdd @kucdd
KU Center on Developmental Disabilities
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
A COMMUNITY NEEDS ASSESSMENT SURVEY OF MEDICAL NEEDS FOR
ADULTS WITH INTELLECTUAL DISABILITIES, DEVELOPMENTAL
DISABILITIES AND/OR COMPLEX MEDICAL CONDITIONS
Sahana Shankar, BS, Rochelle Baer, LCSW, Matthew Imm, MD, Stefanie Brown MD, MBA, Lawrence Friedman, MD, Jonathan
Tolentino, MD & Anjali Saxena, MD
96% SAID THEY
WOULD BENEFIT FROM
THIS CLINIC
• 82 responses
• 61 respondents fully completed the form
• 21 respondents submitted without fully completing
• Calculations are based on how many people responded to that question
• 3 respondents were not interested in the clinic
INTEREST ACROSS ALL SPECIALTIES
• Highest interest is in Internal Medicine
• Data demonstrates need for support (emotional and care-coordination)
• Psychology/Social Work and Navigator/Case Manager were both ranked highly
• Most other specialties ranked comparably
84
7672
6763
5956 55
52 5451 50 48 48
44 44 43
0
10
20
30
40
50
60
70
80
90
% O
F R
ESPO
ND
ENT
S
SPECIALTY
Interest by Specialty
TELEHEALTH INTEREST AND ABILITY
Of those interested in
telehealth 98% are able to attend a
telehealth appointment
80%
20%
Interest in Telehealth
Interested in Telehealth
Not Interested in Telehealth
IN-PERSON VS. TELEHEALTH
• If the respondent answered “Yes” to “Would you be interested in telehealth appointments?”, they were asked “Would you prefer a telehealth appointment instead of an in-person appointment?”
• Slight preference for in-person appointments
• Those who responded “No” to “Would you be interested in telehealth appointments?” likely prefer in-person appointments, so the overall preference for in-person appointments is probably higher
44%
56%
In-Person vs. Telehealth Preference
Telehealth In-Person
REASONS FOR IN-PERSON PREFERENCE
• “Other” reasons include:
• Times when a physical examination is necessary
• Can hear providers more clearly
63
27
5
0
10
20
30
40
50
60
70
Physical examination See Multiple Providers in OneVisit
Difficulty with Technology
% o
f Res
pons
es
Reason for In-Person Preference
REASONS FOR TELEHEALTH PREFERENCE
• “Other” reasons included:
• Sensory needs
• COVID-19
• Less patient anxiety
• Less planning
• Less intimidating
• More convenient47
42
37
21
0 5 10 15 20 25 30 35 40 45 50
Longer Wait Time in Clinic
Comfortable Environment
Transportation
Easier to Coordinate with Caregiver Schedule
% of Responses
Reason for Telehealth Preference
MAJORITY DO NOT NEED
TRANSPORTATION FOR IN-PERSON APPOINTMENTS
23%
77%
Transportation Need for In-Person Appointments
Need Transportation Don't Need Transportation
27%
73%
By Myself With Caregiver/Loved One
Majority of respondents will attend their appointment with a
caregiver or loved one
APPOINTMENT ATTENDANCE
APPOINTMENT STRUCTURE
56%
44% One Appointment
Separate Appointments
Slight preference for having the care in one appointment
THE IMPORTANCE OF CARE IN ONE HEALTH SYSTEM
44%
56%
One Health System See Who I Prefer
• Slight preference to see their preferred provider even if they’re part of different health systems
• There is still value in having care provided in one health system
DISABILITY AND CHRONIC CONDITION DIAGNOSIS
• Autism Spectrum Disorder (37)
• Low-functioning, Speech Delay, SPD, Non-Verbal, High-functioning (Asperger)
• Neuralgia, Respiratory Problems, Anxiety, Chronic Hiccups, Mitral Valve Prolapse, Frontal Lobe Cyst, Marfan Characteristics, Depression, Diabetes
• Epilepsy (5)
• Intellectual Disability (4)
• Down Syndrome (4)
• Hashimoto’s Disease, Physical Mobility
• Learning Disability (2)
• Spina Bifida (2)
• Kidney Failure
• Cerebral Palsy
• Blindness
• OCD
• ADHD
• Fetal Alcohol Syndrome
• Rare Genetic Disorder
• Bloom’s Syndrome
• Immunosuppression
• Depression
• Team-Approach, provider collaboration, interdisciplinary care-coordination with all care in one place
• Experienced professionals who are well-trained to interact with people with disabilities
• Reassuring, informative, competent, caring and respectful of their rights to make decisions
• Clinic designed for people with developmental disabilities (staff that understand their conditions)
• Accepting rare genetic disorders
• Providers who are willing to listen and answer questions
• Family-care approach
• Friendly, accessible, efficient, quality healthcare
• Clean, safe, comfortable, calm, quiet environment
• Short/no wait times
• Flexible hours
• Outpatient medical procedures
• Onsite lab
• Insurance
• Medicaid, private, siding scale for uninsured
• Sedation available
• Escort to appointments
WHAT AN IDEAL CLINIC LOOKS LIKE
KEY TAKEAWAYS
• Overwhelming interest in a clinic designed for people with ID/DD and chronic conditions
• Strong interest in telehealth• Can pilot the clinic with telehealth
• Value in in-person appointments
• Specialties we need to focus on: • PCP (Internal Medicine), Psychiatry, Neurology
• Psychology/Social Work and Navigator/Case Manager
• People with ASD will comprise majority of patient population
• Coordinated care with all specialties in one place
• Providers who can give optimal care to people with disabilities
• Comfortable and quiet environment
• Short or no wait times
AIR-P – Autism Intervention Research Network on Physical Health (ucla.edu) | https://airpnetwork.ucla.edu/
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