Early Intervention Access Across California Kirsten Yeates, M.A., Aubyn Stahmer, Ph.D.

Examining the Barriers to Early Start Access and Strategies to Improve Early Autism Intervention UC Davis MIND Institute, LEND Program

Background Results Discussion

Early autism diagnosis and autism-specific
interventions aides earlier educational
planning, provides access to family supports
and services, and guides the delivery of
appropriate medical care (Filipek et al. 1999).
Early Intervention also saves money in the
long term (Penner et al. 2015).
Early intervention (Part C) services in
California are delivered through the Early
Start Program, which operates through 21
independent Regional Centers (RCs).
Practices vary by region and notable
disparities in both services access and
service provision have been established
among Californias RCs (Zarembo, 2011).
There is not much known about Early Start
and Autism Spectrum Disorders (ASD)
since many children do not have an official
diagnosis by age three.
PART C SERVICES IN CALIFORNIA Increasing Over 90% of RCs report EI demand is increasing steadily each year. There has been an increase in referrals Identified Processes Likely to Improve Access
but not one I can attribute to one
Demand for Early Over 35,000 children were referred to Early Start last year (2016). particular category...Across the board, Begin services before waiting Track referral source data Utilize effective partnerships
58 counties Intervention Pediatricians, hospitals, and parents (self-referrals) are the top referral sources. not just medically-fragile, not just for insurance process, initiating to inform outreach & County offices of education, tribal
autism. services and insurance process prioritize community health centers, local Autism Centers/
21 Regional simultaneously needs Universities, Pediatric providers, etc.
Centers
Autism Spectrum Disorder and Early Start Autism Service Access - 7 responses 33% - 8 responses 38% - 8 responses 38%
Over half (57%) of regions say most ASD cases are initially IS A DIAGNOSIS NEEDED? FULL EVALUATION REQUIRED?
referred as speech delay or concern. 85% of RCs do not require 10% of RCs require a full developmental
a formal diagnosis in order evaluation for access to autism services
Implications for Policy Development & Future Research
Services based on need, not a diagnosis in over half of RCs.
to access autism-specific 70% of regional centers do not Consider removing the insurance requirement/mandate that the RCs
Almost half of RCs wait until close to age three to establish services 20% may require in some circumstances require be the payer of last resort for the Early Start Program. I see the insurance
an autism diagnosis (48%). process and
Structure funding and services continuity across misunderstanding
Nearly half of RCs (48%) utilize the M-Chat for standardized
RCs so providers can be shared in overlapping areas from the medical
screening. Parents who have
and allow families service continuity when relocating
information on community of what
2.5% Only 19% of RCs track autism or likely-autism cases. across regions.
40,000+ of CAs
what their health PART C is truly about as
Children served Regions with data available show autism cases are increasing. insurance can or Ensure competitive reimbursement rates for a barrier to the process
annually population ages DETERMINING ELIGIBILITY WHEN AN AUTISM DIAGNOSIS IS NOT REQUIRED:
0-3 One region reports autism referrals have doubled in the last 6 cannot provide may providers. in general.
1. Child comes into EI after receiving a medical diagnosis of autism
years, and tripled in the last 10 years. assist in expediting Pay providers for transportation time.
2. Brief screening by agency
3. Internal evaluation process (in between a brief screening and full evaluation). the [eligibility]
process. Provider incentives to serve low-resources areas

Barriers Incentives for training long-term bilingual providers We have a lot of

Objectives
Measure the current
demand, length of
process, and access to
autism-specific services
throughout Californias
Early Start Programs.
Ascertain current
barriers to providing
early intervention.
Identify key practices
enabling more timely
Methods The majority of barriers fall under four main areas: Insurance, Language, Provider-Family Linking, Parent Availability/Hardship throughout California. migrant families in
this area, and when
Parent Availability / Family Hardship Reduce stigma through community education
Design: Cross-sectional survey utilizing Foster Care Education Rights Our biggest on developmental disabilities and benefits of Early
its farming season...
Parent Availability - 86% Families relocating,
structured interviews. 43% - For children in foster care, EI services are often delayed need is spanish- Sometimes services
work schedules, vacation. Difficulty taking time off Intervention.
significantly due to lack of educational rights for foster parents. work. have to be declined
Participants: Early Start Program managers speaking
Educate policymakers about unique structure and for parents to work.
(38 total participants surveyed) throughout Parent Denial/Readiness - 33% Parents dont therapists for
Californias 21 Regional Centers
Insurance Requirement recognize symptoms or are in denial. parent education function of Part C services. We are working with
the populations
76% - RCs are the payer of last resort a couple of pilot
100% participation rate. and caseworkers spend significant time
Housing Insecurity - 29% not all families have of children and Offer non-traditional service hours and more
stable housing or want in home services. flexibility with parent training requirements (parent programs to work
Procedure: All participants were contacted helping families access insurance. RCs need
a letter of denial to fund ongoing services.
% Lack Phone/Contact - 43% Disconnected
families that we
serve. participation) alternatives to address equity/disparity on evening/weekend
through email and follow-up phone calls. Denote the
numbers, no response from parents or no-shows.
Insurance companies may not have percentage of in services. service providers for
Interviews averaged 45-60 minutes long and appropriate providers in some areas. Regional Centers
reporting as a these families.
were coded for prominent themes. significant barrier.
Linking Providers & Families
Data collected: Language Barriers Provider Shortage - 67% Physical Therapists

Acknowledgments
access and processes Referral sources Process Changes Lack of Bilingual Providers - 43% (PT)s, Occupational Therapists (OT)s, Speech-
Other Language Barriers - 71% Language Pathologists (SLPs) compounded by
creating better Demand for Services Other issues affecting reimbursement rates set by state.
outcomes. (number of referrals in EI Services Clinicians do not speak families language(s),
interpreters unavailable for specific dialects Provider Availability - 62% Providers limited Thank you to: Aubyn Stahmer, Ph.D. LEND Faculty Advisor The UC Davis MIND Institute
last year, 5-year trend) and ASL. scheduling, and/or prioritizing school or private- UC Davis LEND Program Faculty Kelly Young, Director, WarmLine Family Resource Center
Eligibility process insurance funded contracts before EI. Californias Early Start Program Managers The Interagency Coordinating Council on Early Start
Access to Care EMERGING Legal Status Fears - 43% reported legal status as an emerging concern in the last few months. Undesirable Location - 29% Providers
unwilling to go into underserved regions.
(barriers) CONCERN Parents declining services fearing it may affect their (immigration) status/fear of deportation. References For a complete list of references please contact Kirsten at kyeates@ucdavis.edu