1. Navigator Clinic Outcomes Research Carolina Peña-Ricardo, MD. LEND Trainee 2010-2011

2. Group Members, Lead Faculty Marian Williams, PhD, Psychologist, Autism Training Coordinator Sonia Aller, PhD, CCC, Speech-Language Pathology Fran Goldfarb, MA, CHES, Family Support Christopher Vrabel, PhD, Psychology Fellow Carolina Peña-Ricardo, MD, Developmental-Behavioral Pediatrics Fellow.

3. Description of Project What is Navigator Clinic? – Interdisciplinary team – Training environment – Coach parents to increase self efficacy on IEP Process LEND Navigator Clinic Model: Development of a Methodology to Assess Outcomes. What is the purpose of this study? – Assess effectiveness of the Navigator Clinic – Impact on caregivers, trainees, and referring therapists Methods of the study – Prospective study – Quantitative/qualitative questionnaires

4. Process Quantitative questionnaires completed by caregivers and referring therapists before and after the clinic visits and in a follow up visit. Parenting stress index completed by caregiver before and after Navigator clinic. Qualitative interviews completed by caregivers and referring therapists in a follow up interview. Quantitative questionnaires completed by LEND trainees before and after training.

5. Process Background and literature review. Methods of the study. Data analysis. Submission of the paper to a peer reviewed journal.

6. Background Evidence of connection between coaching interventions and parental knowledge, self efficacy and stress. Melnyk (2004) – Parent empowerment at impatient units (less stress, increased knowledge, increased self efficacy to interact with professionals) Hasting and Brown (2002) – Relationship between parental efficacy on behavioral problems of children with autism and parental depression and anxiety. Sofronoff and Farbotko (2002): – Relationship between self efficacy in managing behavioral problems in children with Asperger before and after an intervention. Our intervention is not focused on behavioral difficulties but on the understanding of interdisciplinary assessments, the IEP process and parental self efficacy for advocating for services for their child.

7. Product/Outcome 6 families, 8 referring therapists, and 8 trainees have completed pre and post clinic surveys. One family also completed the follow up questionnaire and interview. We still need to complete the rest of the follow up questionnaires and interviews with families and referring therapists. We are in the process of analyzing the data, writing the article and sending it to a peer reviewed journal.

8. Product/Outcome The results of the qualitative study will take more time to analyze and will not be included on our first article. Data collection will continue next academic year in order to get a greater number of families enrolled, and may be compared with other navigator models that ex-LEND trainees have initiated outside the UCEDD.

9. A Day in the Life A 9 year old with Autism Immigrants from a rural area of Mexico. Cultural taboos and misunderstanding. No previous knowledge about autism. The importance of mass media. The overwhelming paperwork. The “single parent”.

10. Agency Visit Autism Speaks Funded in 2005 by Bob and Suzanne Wright when their grandson was diagnosed with autism. It now has contact offices in every single state of the US. Many resources for parents in their website. Research, awareness and advocacy.

11. Community Education/TA CHLA Residents Case based curriculum CDC initiative Learn the Signs Act Early + Maternal and Child Health Bureau (MCHB) and its Developmental Behavioral Pediatrics Fellowship Training Programs. CHLA’s Fellowship in Developmental- Behavioral Pediatrics under the head of Dr. Vanderbilt, was invited to participate as one of the sites that could test the curriculum as a pilot. One-hour discussion Pre and post-tests were given to the residents to measure their gain of knowledge

12. Policy Brief Combating Autism Reauthorization Act (CARA) Combating Autism Act (CAA) 2006: 1 billion dollars for diagnosis, treatment and research for the following 5 years. Combating Autism Reauthorization Act (CARA) of 2010 is a federal bill introduced by Senator Chris Dodd from Connecticut to ensure that the programs under the CAA continue and to create a new National Institute of Autism Spectrum Disorders within NIH, to consolidate funding and accelerate research.

13. Policy Brief Need: – There is still a huge need of research to learn more about the possible causes of autism, and options of treatment – If the law is not replaced: The mandate for a strategic annually updated plan for autism research will end. Research will loose momentum. The funds for clinical practice guidelines and training will stop. – Education and awareness within the health care community is still a challenge and efforts are still needed. Economic Impact: – Autism cost American families $3 to $5 million over a life time per individual, and to society almost $90 billion yearly. – Early intervention in children with autism can improve their self help skills, their independency and decrease this costs. – Guidelines of care and education for health care providers will result on a better primary management of children with autism, and may decrease inpatient psychiatric expenses. What can be done: – Organizations like Autism Speaks and AAP are supporting this initiative. – As health care providers we can support it too.

14. Lessons Learned Research: – IRB process and training. – Finding a Journal to publish your article. – How to write for a journal. Navigator process: – Literacy difficulties (education/ health) – Coaching vs Teaching – Family centered vs Health Provider centered. A Day in the Life: – Be mindful of the cultural differences – Family centered vs Parent Centered Agency Visit and Policy Brief: – Other perspective for research – Policy importance – Leadership power

15. Next Steps Navigator Clinic Research: submission of the paper. Second phase of the research project, next year. Beginning my own first author research project. Continue building my career in working with families affected by disabilities.

16. Acknowledgments Marian Williams, PhD. Autism Training Coordinator. Research Lead. Chris Vrabel, PhD. Psychology Fellow. Navigator Clinic Team. Douglas Vanderbilt, MD. Developmental Behavioral Pediatrics Fellowship Program Director. Al Yusin, MD. LEND’s Discipline Supervisor.