UCEDD Success Stories - Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute

Sacramento, CA

May 10, 2022

Website Link  http://www.ucdmc.ucdavis.edu/ddcenter/

Community Services: Model Services 

Highlighting Social Skills Groups and SibShop Integration

Drs. Haener and Tudor, our Child Life Team, including Erin Roseborough and Veronica Tuss, lead groups for weekly intervention using evidence-based intervention for children with ASD, their parents, and their siblings. Children and adolescents between 8 to 18 years of age, participated in groups divided by age (8-10 years, 11-14-years, 14 to 17-years) to learn and practice evidence-based strategies to improve social communication and social skills.  Their parents participated in a separate parent group to learn about social communication skills that they could also foster in other environments to support concepts and skills that their children learned, and also to have a  supportive parent group. Siblings were invited to participate in a sibling group that included activities adapted from the Sibshop Support program. MIND  Child Life Staff receive training this year to increase support to siblings as their families participated in social skills groups. All services were delivered by telehealth during the past two years and participants were pleased with the online delivery of all services, the accessibility of group leaders, and the opportunity for parents and children to continue to connect with others during this particularly challenging year. 

Drs. Tony Simon, Kathleen Angkustsiri, and Janice Enriquez lead the 22q  Healthy Minds clinic and conduct clinical neuropsychological and medical evaluations on patients diagnosed with 22q11.2 deletion (VCFS/DiGeorge)  syndrome. CEDD research and clinical faculty, led by Tony Simon, Ph.D.,  Kathy Angkustiri, M.D., and Janice Enriquez, Ph.D., have worked together to create, maintain, and expand the 22q11.2DS Clinic. This past year we included a Psychology Postdoctoral Fellow, Jonathan Bystrynski, within this team, as well as other rotating interdisciplinary trainees (e.g., speech-language pathology, family members) within LEND to support this clinic periodically via consultation. The clinic provides developmental-behavioral pediatric and neuropsychological assessments of all children with 22q11.2DS  participating in Dr. Simons NIH research program, with feedback and follow-up support for families and the professionals providing care in their home communities. Follow-up with families shows a high degree of satisfaction with the clinic, greater understanding of the child's disorder, and an increased ability to advocate for and secure services required for educational and intellectual development. One hundred and thirty-nine (139)  people received services in the 22q11.2DS Clinic in the five-year period. 

The Feeding Recovery Clinic, led by Scott Akins, DO, and Meredith Stawicki,  CCC-SLP, is an interdisciplinary clinic that provides feeding intervention services for children with behavioral feeding difficulties and their families. The  Feeding Recovery Clinic team includes a speech (feeding) therapist, a dietitian, a mental health professional, and a developmental-behavioral pediatrician. The clinic provides both clinical services and interdisciplinary training, using the S.O.S evidence-based approach. Last year as a LEND  trainee Ms. Stawicki conducted a needs assessment of our feeding clinic. 

Children with autism and NDD have a higher rate of feeding disorders or challenges than typically developing children with an estimated prevalence of feeding difficulties in children with ASD as high as 90%. An estimated  58-67% of parents of children with ASD report selective or picky eating in their child. She surveyed and interviewed caregivers of children under age 7  with ASD or NDD with feeding challenges seen in our clinic during the past year for assessment or intervention for feeding challenges. Results indicated that children had difficulty transitioning to solid foods and had very restricted diets of mostly crunchy foods or liquids and those that did eat solids accepted fewer than 20 foods.

Parents reported children were more open to trying needed foods with the therapist and ate a wider variety of foods at school. Feeding challenges greatly impacted the family including increased stress and worry as well as frustration, difficulty finding childcare, and eating out. 

  • I just think it's a really hard road that most people don't understand and it does bring a lot of emotions and frustration and heartache for the child and the family, that's not easily remedied. I mean, it's going to take years and years and years.  Parents had concerns about their childrens' nutritional intake. Parents reported challenges in obtaining services for feeding issues as related to insurance.
  • I am a really strong advocate, and my background is in education, and I kind of already know some of those barriers my background is not in health or insurance, but as a parent, I think you really have to learn not to take no for an answer. 

Services were impacted by the COVID-19 pandemic. Data were used to improve and adapt our feeding clinic to support family needs.