The UCLA Tarjan Center has several researchers with expertise that span areas of assessment development, psychometric evaluation, biomarker development, clinical and family-based interventions, and participatory methods with people with intellectual disabilities (ID) and their families in community settings. These researchers also work with individuals with neuro and developmental disabilities due to a range of etiologies.
We partner with our Tarjan Advisory Committee, state and community agencies, and families to identify pressing but under-studied topics. We strive to integrate service, training, research, and dissemination across all UCEDD projects.
Motor Assessment, Tool Development, and Interventions
Motor Phenotyping. Currently, standardized assessments of motor function are limited in their ability to evaluate individuals with ID/DDs with a range of intellectual and developmental function (e.g., intellectual disability). This work aims to improve characterization of motor function by developing quantitative and objective measures of motor development (e.g., wearable sensors). These measures are used in those at risk and with ID/DDs from early infancy through adulthood. The goals are to improve characterization for motor function, develop motor biomarkers, and identify interventions that can improve motor development and other developmental outcomes.
Dance/Organized Sports Activities. This work recognizes that motor impairments can often lead to more sedentary behaviors and can lead to barriers in engaging physical activity programs such as dance and sports. There are many other barriers to these programs as well for individuals with ID/DDs (accessibility, programs adapted for these individuals, and coaches trained to serve individuals with ID/DDs). The expressive movement initiative targets these barriers, and the mission of the EMI are to: 1) introduce dance and expressive movement to children with ID/DDs; 2) provide an expressive outlet for children with DD; 3) foster mentorship and a sense of community among students and volunteers; and 4) eliminate the stigma and reduce the challenges associated with disability on the UCLA campus and beyond. This study is currently in progress as a randomized wait list-controlled trial. The goal is to build evidence for the benefits of organized physical activities for individuals with ID/DDs to inform how these programs should be developed and expanded and increase accessibility to these programs.
SCALE: Identification and Targeted Intervention for Selective Motor Control of the Lower Extremities in Infants and Toddlers. Previously, children with spastic CP were not diagnosed until they failed to reach developmental milestones and/or developed spasticity. A recent movement toward earlier identification resulted in the ability to diagnosis CP as early as 3 months creating a need to develop improved motor assessments and targeted interventions. Dr. Fowler and colleagues are currently developing an evaluation and intervention for the spastic subtype of CP called “Mini-SCALE” in infants and toddlers. This work is an expansion of their widely used evaluation called Selective Control Assessment of the Lower Extremity (SCALE) for patients with CP > 3 years of age. Dr. Fowler is recruiting children with, or at risk for CP, and typically developing children ages 3 months through 3 years of age. Parents and children participate in a Zoom session. A physical therapist coaches’ parents to elicit selective movements of their child’s hip, knee, ankle, and toes through play activities. The data collected will inform the refinement of Mini-SCALE and an intervention for impaired selective motor control in spastic CP. To date, families of 47 children have enrolled. This research, which is funded by the CP Foundation also supports a family education component in partnership with the UCLA NICU Early Identification Team, NICU follow -up clinic, and Intervention program for infants 0-3 and other entities that will support parents in navigating services for 0-3 and 3-22. Materials will be available in English and Spanish.
Vaccine Decision Making
Vaccine Hesitancy in Technology Dependent Children. Vaccines are one of public health’s greatest successes and even more critically important in the wake of the ongoing COVID-19 pandemic. Vaccine hesitancy can predispose children with ND to COVID-19 when other children would have been vaccinated. As of July 31, 2021, COVID-19 vaccination coverage among U.S. adolescents aged 12–17 years was 42.4% for ≥1 dose and 31.9% for series completion.[i] Little is known about parental COVID-19 vaccine hesitancy in children with neurodevelopmental disorders. TC researchers, Drs. Clark, and Wiley are conducting a study to identify constellations of co-occurring health conditions likely to complicate decision-making by youth with ID and their racially and ethnically diverse parents about COVID-19 and other non-mandated vaccinations. PhD students will be mentored to conduct individual interviews with parents and healthcare providers of youth who are technology-dependent with intellectual disability to learn about their vaccination decision making process. Results of the research study will inform public health efforts to improve vaccination decision-making in families with a child with technology dependence, including the subset of those with ID. In the future, tailored vaccination messaging for families and youth with ID and technology dependence may be tested for consumer acceptability and effectiveness in influencing vaccination decisions of youth, parents, and pediatric care providers. Findings will be shared with parents through a TC-sponsored information session, and will be open to the community, providers in the UCLA Health system, as well as those who participated in the study.
Social Skill Interventions for Autistic Adults
PEERS® for Dating Program.The PEERS® for Dating Program is a randomized controlled trial (RCT) testing the efficacy of a 16-week social skills intervention focused on supporting autistic adults in learning the skills necessary to develop and maintain romantic relationships. Focus groups with autistic adults and their parents (N=38) were conducted prior to the development of the intervention to understand treatment priorities and issues related to dating. The study will be the fourth and final cohort in the fall of 2022. Study enrollment is currently at 78 participants and total enrollment is expected to be over 100 participants. The intervention is offered via telehealth to promote greater access to care. Participants are randomly assigned to receive an undergraduate or graduate student dating coach as part of the study. Dating coaches include students who have expressed an interest in providing support to neurodivergent adults. All coaches are trained and supervised by postdoctoral psychology fellows and licensed clinical psychologist specializing in treatment for autistic youth. Following the completion of the current RCT, we will conduct a needs assessment with participants to assess acceptability, feasibility, and to identify any additional unmet treatment priorities. Additionally, we plan to conduct a second RCT, along with cross-cultural validations trials, with the goal of publicly disseminating this program across the globe.
PEERS® for Careers Program. Using a community-based participatory research model, autistic adults and their parents were involved in identifying treatment needs and priorities prior to curriculum development through a series of focus groups around employment needs and challenges (N=43). The PEERS® for Careers Program is a 20-week employment-related social skills intervention. Currently, the study is in its fourth and final cohort of participants. Across the entire study to date, 107 autistic young adults have enrolled, with nearly 60% of those who have completed the 20-week program reporting being engaged in employment-related experiences (e.g., internship, volunteer, paid employment) during the follow-up phase after the 20-week program. We will conduct a needs assessment with participants at the end of the study to assess acceptability and feasibility of the intervention. This information will be used to refine the treatment. Additionally, we plan to conduct further research, expand the employer-facing side of the program, and offer these groups as clinical services, with the goal of eventually internationally disseminating this program to researchers, practitioners, and educators.
PEERS® for Preschoolers. PEERS for Preschoolers has begun recruiting to test the benefit of a social skills group (PEERS® for Preschoolers) for children diagnosed with Autism Spectrum Disorder between 4 to 6 years of age. For more information on this study contact us at 310-26-PEERS or email@example.com
PEERS L-DOPA Study. The purpose of this 16-week study is to examine the effect of medication (L-DOPA or a placebo) plus a specialized behavioral intervention aimed towards increasing social skills. Participants will receive: PEERS social skills training (16 sessions total); comprehensive diagnostic and cognitive evaluation; neurological testing; L-DOPA, or placebo (inactive medicine); questionnaires; interviews; psychological and laboratory testing; brain scan (pre and post); and up to $250 if participant completes all in-person visits. For more information (310) 267-3377, firstname.lastname@example.org
To register for research participation and be notified when a study matches your interests email our Director of Research, Dr. Rujuta Wilson at email@example.com