Gina Cook, Ph.D. David Bailey, DDS Jeff Hall, Ph.D. Doug Petersen, Ph.D., CCC-SLP

Project Overview  Children with Special Health Care Needs (CSHCN) Bureau Eight multidisciplinary clinics ○ Held 3-6 times per year Serves approximately 2,400 children and their families ○ Assisting medical home in evaluation and long- term management of children with developmental disabilities  Examine the impact of CSHCN clinics in terms of: Benefits to families Timeliness of diagnosis Improved access to services Overall family satisfaction

Methods  Selected 4 of 8 sites St. George, Moab, Ogden, and Richfield  Mailed questionnaires to 120 families Satisfaction survey Open-ended questions Permission for follow-up phone call ASD specific questionnaire (as applicable)  Follow-up phone calls

Procedure  Attend CSHCN clinic to better understand service delivery  Obtain IRB approval Utah Department of Health Utah State University  Identification of potential participants  Mail surveys  Conduct phone interviews  Analyze data  Present findings to URLEND and CSHCN clinic staff

Survey Participants  120 mailed, 14 undeliverable, 30 completed  Avg. age of children – 5 ½ years (18 m – 12 yr)  73% male, 27% female  Primary Diagnosis – (2/3 also had a 2ndary) 59% ASD, 24% Other, 10% ADHD, 3% Intellectual Disability 3% Seizure Disorder

Results  Average Severity of Child’s Health Care Needs 5.4 on a 1 to 10 scale, 10 = most severe  Average Level of Stress Caring for Child 6.0 on a 1 to 10 scale, 10 = extremely high stress  Staff alleviates this stress was rated as often to sometimes  Average parent experiences depression or anxiety related to child’s needs 3 on a 5 point scale (Some of the time)

Results  General Satisfaction Questionnaire (n = 30) Intake process – Good (3.2) Communication – Good to Excellent (3.5) Clinic experience – Good (3.3) Billing and referrals – Good to Excellent (3.5) Timeliness of diagnosis – Good (3.2) Facility – Good to Excellent (3.2)  ASD Survey (n = 18) Provider knowledge of Autism – Good (3.3) Answers questions about Autism – Good (3.1) Information about interventions – Fair to Good (2.5) Provide explanations about tx – Fair to Good (2.7) Supports my decisions – Good (3.2) Staff follow through – Good (2.9)

Open-Ended Questions  Liked most Knowledgeable doctors/specialists (7) Friendly staff (5) 1 trip for many doctors, variety of specialists (8) They come to us, no more trips to SLC (4) Got answers that I didn’t get from Primary physician  Liked least Long waiting room time (4) Better follow-up of referrals (2) Still no diagnosis Biased Dr. (2) Waiting time to get an appointment was too long  Change Less waiting Quicker diagnosis Come more often (3) Act more quickly on referrals Support groups or parenting classes/more information

Methods  Follow-up Phone Interview Positive outcomes ○ “Did the evaluation lead to something positive for your family?” Importance of diagnosis ○ “What did a diagnosis mean for your family?” Delivery of diagnosis ○ “Did you feel supported by the provider?” Utility of clinic reports ○ “Did the information in the reports make it to your medical home?”

Results  Summary of phone interviews Clinic visit led to: ○ Perceived positive outcomes for the family. ○ Better understanding of child ○ Improved access to services (i.e., school, financial, insurance) Delivery of diagnosis ○ Almost unanimous report of providers being professional, caring, supportive, and open to family questions!

Results  Summary of phone interviews Utility of Clinic Reports ○ Most families received reports ○ Most families did not know if PCP received reports ○ Lack of follow-up with families from PCP Additional Comments ○ “I was really scared and intimidated when I got there. But after I met the doctors, I was calmed and my son was comfortable, much more comfortable than even his regular doctor. It was really amazing.” ○ “…I felt like I did not receive any help so I was very very disappointed and hope in the future they can be more professional and answer more questions.”

Discussion  Survey, Open-Ended Questions, Phone Interview: Generally favorable reports Family stress and depression were rated higher than severity of child’s disability More information about treatment options Less wait time More frequent visits Better follow-up

Suggestion/Change  Syllabus Pros ○ Provided detailed information about sessions ○ Provided links to necessary readings Cons ○ Difficult to determine due dates for specific assignments ○ Difficult to know exactly how many clinical hours are required and how to record time on log.  Change Provide a timeline specific to trainees that outlines due dates for assignments Provided timeline serves as a master calendar for due dates to eliminate discrepancies

Suggestion/Change  Access to clinical training opportunities for distance sites Pros ○ Faculty and staff at the Utah sites were wonderful Cons ○ Limited availability of sites outside of Utah ○ Increased time spent coordinating clinical hours by trainees outside of Utah  Change Developing relationships with agencies for increased training opportunities outside of Utah Exposure to challenges faced in other parts of the region (i.e., limited access to specialists, etc.)

Suggestion/Change  Didactic Sessions Pros ○ Relevant topics ○ Timely information ○ Learned more about being Family Centered and Evidence-based Practices ○ Good discussions/interactions among trainees & faculty Cons ○ Some didactic sessions had no or little trainee participation required.  Change Increased expectation that all presenters come up with at least 3 questions or an activity that will produce more discussion.