Access to Services for children with Autism

Goals To better understand the current data on access to care in children with autism nationally To explore some of the differences, strengths and limitations of national data compared to California data To elicit active thinking on what should be the future changes to improve access to care and needs for further research 2

Background Lower SES, race and ethnicity have been associated with decreased access, utilization and quality of care for children with autism. 1,2,3 Hispanic children with special health care needs are more likely to report difficulty using services than other racial/ethnic groups. 4 Previous studies on access to services have focused on physical health and insurance but not on services that address the core deficits of autism or quality of the services.

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CDC Statistics CDC: Centers for Disease Control and Prevention states participate in the study Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin Sites were selected through a competitive objective review process on the basis of their ability to conduct active, records- based surveillance of ASD; they were not selected to be a nationally representative sample. 5 CDC MMWR, March 28, 2014

CDC Statistics Data collected from: – Education records, including evaluations to determine eligibility for special education services, – Health-care source: psychologists, neurologists, developmental pediatricians, child psychiatrists, physical therapists, occupational therapists, and speech/language pathologists. Not all sites have permission to access education records: – No access: Missouri and Wisconsin – Partial access: Alabama, Colorado, and North Carolina 6

CDC Statistics Prevalence among 8 year old children: – 2002:1/156 – 2006: 1/110 – 2008: 1/88 – 2010: 1/68 Prevalence by States: – 2008:Alabama 1/208Utah 1/47 – 2010:Alabama 1/175New Jersey 1/45 Prevalence in Latinos : – 2008:Total: 1/126 – 2010:Total: 1/92 – 2008:Alabama: 1/714New Jersey: 1/126 – 2010:Alabama: 1/833New Jersey: 1/47 7

CDC Statistics Distribution by Race: Total Population: – White Non Hispanic: 53% – Black Non Hispanic: 20% – Hispanic: 18.9% – Asian/Pacific Islander: 4.3% – American Indian/Alaska native: 0.6% 8

California Population 2010 Total Population: 37,253,959 Persons under 5 years : 6.5% Percentages by ethnicity: – White non Hispanic : 39% – Black: 6.6% – Hispanic: 38.4% – Asian: 14% – American Indian Alaska Native: 1.7% – Native Hawaian/ Other pacific Isander: 0.5% 9 United States Census Bureau CDC data: White Non Hispanic: 53% Black Non Hispanic: 20% Hispanic: 18.9% Asian/Pacific Islander: 4.3% American Indian/Alaska native: 0.6%

California Statistics Department of Developmental Services California. DDS March 1999: From 1987 to 1998 there was an increase of 273% in reported cases of autism in California 10

California Statistics DDS CA Autism Cases – 1987: 2,778 – 1998: 10,360 California Population: – 1998: 32,682,794 Rough estimate of prevalence: – 1/3000???? (all ages with ASD/ Total Population of CA) LA times reported in Dec 2012: 16,367 autistic children between the critical ages of 3 and 6 were served by Regional Centers CA in

California Statistics University of California’s Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute. October – 684 children from English- or Spanish-speaking families – Two birth year cohorts ( and ) – 375 children with autism/309 children with mental retardation – Data from: DDS Eval Report; Reg Center records; ADI-R; Study questionnaire. Without evidence for an artificial increase in autism cases, we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California, and the number of cases presenting to the Regional Center system is not an overestimation of the number of children with autism in California 12

13 Racial disparities The level of autism services also varies by race and ethnicity. Here are figures on average spending per autistic child across the developmental services system. Source: California Dept. of Developmental Services. Graphics reporting by A LAN Z AREMBO Data analysis by S ANDRA P OINDEXTER T HOMAS S UH L AUDER, D OUG S TEVENS Los Angeles Times, Dec 13, 2011

14 Source: CA Dept. of Developmental Services. Graphics reporting by A LAN Z AREMBO Data analysis by S ANDRA P OINDEXTER T HOMAS S UH L AUDER, D OUG S TEVENS Los Angeles Times, Dec 13, 2011

15 Source: LA Unified School District. Graphics by A LAN Z AREMBO Data analysis by D OUG S MITH AND S ANDRA P OINDEXTER Los Angeles Times, Dec 13, 2011

Need/Objective To examine effects of acculturation on access, intensity and scope of intervention services among children from low socio-economic status with autism spectrum disorders (ASD) in California.

Methods Retrospective chart review Sample: cases of ASD in Medicaid-funded mental health clinic  January 2009-December 2011  Eligibility based on ASD confirmation by ADOS or clinician assessment Inclusion criteria:  Confirmed ASD diagnosis  Child older than 3 years  IEP or state services information contained in chart N=152 cases

Analysis Predictor variables:  Parent’s ethnicity (Hispanic vs. non-Hispanic)  Parent’s primary language (English vs. others)  Parent’s secondary language  Parent foreign or US born

Analysis Outcomes:  Child’s age at parental concern and diagnosis  Inclusion of social skills in IEP  Inclusion of communications goals in IEP  Enrollment in State Disability Services (Reg Center)  Amount of time provided by State Disability Services (per week) Analysis:  Linear and logistic regression analyses 19

Results 20 CA Population White non Hispanic : 39% Black: 6.6% Hispanic: 38.4% Asian: 14% American Indian Alaska Native: 1.7% Native Hawaiian/ Other pacific Islander: 0.5% LA Population White non Hispanic : 27% Black: 9.2% Hispanic: 48.3% Asian: 14.6% American Indian Alaska Native: 1.5% Native Hawaiian/ Other pacific Islander: 0.4%

Results 21

Results 22

Results 23 Variable Mean ± SD Length of Time Parent Has Been in US (years) ± 7.91

Results CDC Data: Autism: 43%, PDD: 46%, Asp:11% Male/Female: 4-5/1 (70%/20%) Age At Mental Health Clinic Assessment (years) 7.61 ± 3.68

Results VariableN (%) IEP Social Skill Goals71 (51.1%) Communication Goals123 (85.4%) State Disability Program Direct Services Provided95 (62.5%) 25 Variable Mean ± SD State Disability Program Hours of Child Direct Services per Week 2.90 ± 6.88

Results Variable Mean ± SD Age Parental Concern (years) 1.70 ±.930 ASD Diagnosis (years)4.47 ± CDC Data: Median Age of Diagnosis: 53 months (4.4 years)

Results Social Skills Goals Communicatio n Goals Regional Center Client Hours of Child Direct Services Predictor ORp p p βp English Language Age at Assessment Male Gender Hispanic Ethnicity

Conclusions Parents who didn’t have English as primary language had significantly fewer services, such as inclusion of social skills and communication goals in the IEP Parent primary language also affected number of hours of ABA, DIR/Floortime, DTT or other behavioral therapy, provided by the state disability services. Ethnicity alone did not influence the scope or intensity of services received. 28

Implications Clinicians should be vigilant to identify potential autism service disparities based on primary parental language. More research in understanding reasons for these disparities needs to be conducted. Further investigation in the specific relationship between acculturation and receipt of autism services could identify modifiable barriers. 29

Implications Research based on only ethnicity or race may miss critical modifiers affecting access to care. Training parents in self efficacy and advocacy could be a focus of intervention in non English speaking families. 30

Limitations Retrospective chart review Missing data secondary to incomplete charts Difficulty standardizing the needs of children with autism given the highly individualized type of services Population from a mental heath services clinic 31

Questions 32

References Disparities in Diagnosis and Access to Health Services for Children with Autism: Data from the National Survey of Children’s Health. Journal of Developmental Behavioral Pediatrics; 2008 Racial/ethnic disparities in the identification of children with autism spectrum disorders. Am J Public Health Mar;99(3): Epub 2008 Dec 23. Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, United States, 2006, 208 and Savithri Nageswaran; Susan L. Parish; Roderick A. Rose; Melissa D. Grady.Do Children with Developmental Disabilities and Mental Health Conditions Have Greater Difficulty Using Health Services Than Children with Physical Disorders? Maternal and Child Health Journal. 2011;15(5): © 2011 Springer California Dept. of Developmental Services. html,0, htmlstory html,0, htmlstory US Census Bureau 33

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