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 Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

Acknowledgements

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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

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Treuman Katz Center for Pediatric Bioethics

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?

Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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) Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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) Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

Steps to Diagnosis*

6-9 Month Wait 6-7 Month Wait PCP initiates referral Initial intake with medical provider Evaluation by Psychologist Final Diagnosis Final Diagnosis (may include formal evaluation)

Total average time after PCP referral: 12-16 months

*Based upon April 2011 data Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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. Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

Results

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Number of referrals (as of May 2011), including treatment and diagnostic evaluations, is over 1400

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59% Evaluation

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10% Mental Health Treatment

Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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) Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

Results

Average number of days from initial referral to feedback date for evaluations

250 200 150 100 50 0 Average number of days from initial referral to feedback date *A recent review (July 2011) indicates that expected wait times remain similar or higher Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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%) Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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

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Treuman Katz Center for Pediatric Bioethics

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). Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 Referent Sample:

4,945 NON-CSHCN

First opportunity to examine survey results for Non CSHCN

Treuman Katz Center for Pediatric Bioethics

Results

Autism

Functional Limitations

Other Special Health Care Needs 100 90 80 70 60 50 40 30 20 10 0 55,5 8,9 Self-Care Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 90,6 37,5 Learning 79,9 18,7 Communication 57,6 26,2 Behavioral Difficulties

Treuman Katz Center for Pediatric Bioethics

Results

Autism

Insurance

Other Special Health Care Needs 60 50 40 48,6 31,1 32 30 20 10 8,6 8,6 0 Uninsured in last year Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 14,8 Had Unmet Needs Inadequate Insurance

Treuman Katz Center for Pediatric Bioethics

Results

Autism

Impact on Families

Other Special Health Care Needs 70 60 50 40 30 20 31 19,5 38,6 16,7 10 0 Pay $1,000 or more per year out of pocket Financial Problems due to Diagnosis Seventh Annual Pediatric Bioethics Conference July 22-23, 2011 57,2 21,7 Family Member Quit/Reduce Work

Treuman Katz Center for Pediatric Bioethics

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 Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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) Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics

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.

Seventh Annual Pediatric Bioethics Conference July 22-23, 2011

Treuman Katz Center for Pediatric Bioethics