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/