1. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 BARRIERS IN ACCESS TO CARE AND BURDENS ON FAMILIES LIVING WITH AUTISM Mariam Araujo, PhD Stephanie Pickering, PhD Amber Persons, BA Dora Hall, ARNP Ella Vanderbilt-Adriance, PhD Jennifer Mannheim, ARNP Felice Orlich, PhD

2. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Acknowledgements Data Management at Seattle Children’s Erin Easley, MSW and Amber Persons assisted with information about current referral processes and characteristics of families on the wait list

3. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Prevalence 1 in 150 Broader ASD 1 in 110 (CDC, 2006) One study in South Korea indicated 1 in 38 (Shin-Kim et al., 2011) Is there under diagnosis?

4. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Delay in Diagnosis Even children who display more severe symptoms do not typically obtain a formal diagnosis until 4 ½ years of age Average 13 month delay between initial evaluation and final diagnosis Children with milder symptoms of ASD are typically receiving diagnoses two years later, e.g. 6 ½ years (Handleman, et al, 2000) Studies have shown that about one third of parents noticed a problem before their child’s first birthday, and 80% saw problems by 24 months. (De Giacomo, et al 1998)

5. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Implications of an Early Diagnosis Diagnoses are considered reliable by 2 years of age (Lord et al, 2006) Early intervention has been shown to greatly improve outcomes (e.g. National Research Council, 2001) Behavior and Communication Interventions (e.g. ABA, Speech and Language Treatment, etc.) IFSP, IEP Respite/funds for families DDD, SSI, Identification with resource/parent groups Emotional support and resources (knowledge, monetary or otherwise)

6. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Steps to Diagnosis* PCP initiates referral Initial intake with medical provider Evaluation by Psychologist Final Diagnosis (may include formal evaluation) 6-9 Month Wait 6-7 Month Wait Total average time after PCP referral: 12-16 months *Based upon April 2011 data

7. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Methods Two sources of data were used in this study: The Data Management Department at Seattle Children’s Hospital provided information on wait time from referral to diagnosis Data from the National Survey of Children with Special Health Care Needs (NS-CSHCN, 2005-06) was consulted to identify specific needs of families.

8. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results Number of referrals (as of May 2011), including treatment and diagnostic evaluations, is over 1400 59% Evaluation 10% Mental Health Treatment

9. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results Evaluation Data from Seattle Children’s Hospital (SCH) Autism Center indicated a four-fold increase in the wait list times for a diagnosis of an autism spectrum disorder between February 2010 to April 2011 Treatment Current (July 2011) anticipated wait time for mental health treatment is nearly three years (35 months)

10. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results *A recent review (July 2011) indicates that expected wait times remain similar or higher

11. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results Insurance status 20% of those waiting for evaluations are out of King County Medicaid, insurance issues, remote location or are from out of state At least 45% of families on SCH Autism Center wait list have Medicaid as a listed payor No-show rates are nearly double among families with Medicaid insurance (2.4% versus 4.4%)

12. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 National Survey of CSHCN Sponsored by: Maternal and Child Health Bureau Health Resources and Services Administration Sampling & interviews overseen by: U.S. Department of Health and Human Services Nationwide Telephone Survey: 2005-06 Data sets available for download www.cshcndata.org

13. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Sampling Method Telephone numbers randomly called to find households with children under 18. Approx 3,800 households with children contacted in each state. Parent asked about age, gender, race, and ethnicity of each child in household. Screened for SHCN. 40,840 CSHCN interviews completed nationwide (750-850 per state). Referent Sample: 4,945 NON-CSHCN First opportunity to examine survey results for Non- CSHCN

14. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results

15. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results

16. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Results

17. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Discussion Current treatment guidelines for Autism advocate early intervention for the best developmental outcomes, yet the current wait times and unmet needs of families stand in stark contrast to these guidelines. These figures are even more concerning when one considers that children with autism have more difficulty getting an initial referral for an evaluation, with some pediatricians adopting a “wait and see” approach Questions about milestones by a pediatrician in a well child care check may not clarify the quality or frequency of behaviors

18. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Discussion We speculate that populations with additional challenges, such as lower-incomes and minority families, face even greater challenges obtaining appropriate diagnosis and treatment. Prevalence rates of autism are much lower among Latinos (nearly half) Among preschool age children the lowest rates of autism occur in poor children (Liptak, et al 2008)

19. Treuman Katz Center for Pediatric Bioethics Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 References Handleman, J.S., Harris, S., eds. Preschool Education Programs for Children with Autism (2nd ed). Austin, TX: Pro-Ed. 2000 De Giacomo, A. & Frombonne, E. Parental Recognition of developmental abnormalities in autism. Eur Child Adolesc Psychiatry.1998 7 (3): 131-6. Lord, C., Risi, S, DiLavore, PS, Shulman, C, Thurm, A & Pickles, A. Autism from 2 to 9 years of age. Arch Gen Psychiatry. 2006 Jun; 63 (6): 694-701. National Research Council. Educating Children with Autism. Washington, DC : National Academy Press, 2001. Liptak, G.S., Benzoni, L.B., Mruzek, D., Nolan, K. Thingvoll, M., Wade, C., Fryer, E. Disparities in Diagnosis and Access to Health Care Services for Children with Autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics. 2008 29 (3), pp152-160.