In The Politics of Autism, I write:California's Legislative Analyst Office has a report titled "Evaluating California's System for Serving Infants and Toddlers With Special Needs."
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”
Tables in the report show that California ranks 46th among the 50 states in meeting the initial service plan deadline and 47th in meeting the begin services deadline. 47th among the 50 states in notifying schools about impending transitions, 44th in holding planning conferences, and 47th in developing transition plans.
The executive summary:
California Serves More Than 40,000 Infants and Toddlers With Special Needs. In 2015‑16, California provided early intervention services to about 41,000 infants and toddlers with special needs. These infants and toddlers either have a disability (such as a visual or hearing impairment) or a significant developmental delay (such as not beginning to speak or walk when expected). The state’s early intervention system provides these infants and toddlers with services such as speech therapy and home visits focused on helping parents promote their child’s development. Parts of California’s early intervention system date back more than 35 years. During this time, the state has not regularly, or even periodically, evaluated this system. In this report, we provide a comprehensive assessment of the system.
Services Are Provided Through Three Programs. California’s plan for serving infants and toddlers with special needs involves three programs operated by two types of local agencies.
State Provides Most Funding for Early Intervention Services. Although services are required as a condition for receiving a federal early intervention grant, this grant covers a relatively small portion (about $50 million, or 10 percent) of associated service costs. State funding covers the bulk of service costs (about $370 million, or 77 percent), with other fund sources (such as health insurance billing) covering the remainder of costs (about $60 million, or 13 percent).
- Regional Centers’ Early Start Program. Regional centers are the main provider of early intervention services in California. These centers are nonprofit agencies overseen by the Department of Developmental Services. In addition to their original mission—coordinating community‑based services for adults and school‑aged children with developmental disabilities—regional centers coordinate services for about 33,500 infants and toddlers with special needs.
- Schools’ Legacy Program. The state also provides early intervention funding for 97 schools that have a long legacy of providing early intervention services. The state funds these schools to serve the same number of infants and toddlers as they served when they first received state funding back in the 1980s—about 5,000.
- Schools’ Hearing, Visual, and Orthopedic Impairments (HVO) Program. Although regional centers are required to serve most infants and toddlers not served in the school legacy program, schools are required to serve infants and toddlers who have solely HVO impairments and no other eligible condition. Schools currently serve about 2,500 infants and toddlers with HVO impairments, of which about 1,500 are served in the school HVO program and 1,000 are served in the legacy program.
Schools and Regional Centers Provide Similar Services Using Different Delivery Models. Although federal law outlines a general process both schools and regional centers must follow in serving infants and toddlers with special needs, the two types of agencies use notably different service delivery models. Specifically, schools tend to employ their own service providers (such as speech therapists), whereas regional centers coordinate services offered by independent service providers.
Important Differences Between Schools and Regional Centers. Although considerable overlap likely exists in the populations served by the two types of agencies, schools spend much more per child than regional centers (about $16,000 as compared to about $10,000). Additionally, regional centers tend to offer parents more choice among service providers. Finally, regional centers are better equipped to help parents access public or private insurance coverage.
California’s Bifurcated System Likely Causes Service Delays. Because California’s system is divided between three programs and two types of agencies, parents and agency staff are frequently confused as to which program is responsible for serving each child. Moreover, California lags nearly all states in providing timely services. Many infants and toddlers wait weeks or even months before being placed in the appropriate program, during which time they do not receive services. California also performs worse than other states in facilitating transition from early intervention services to preschool special education. Based upon our conversations with stakeholders, we believe these preschool delays likely result from some regional centers struggling to coordinate with schools.
Unify All Services Under Regional Centers. Given the shortcomings of California’s bifurcated system, we recommend the state unify the system under one lead agency. Compared to California’s existing system, a unified system likely would provide more timely services and provide more equal funding for each child served. Given how the state’s early intervention system has evolved over the past 35 years, we believe regional centers currently are better positioned than schools to serve in this lead capacity. Specifically, regional centers already serve the vast majority of infants and toddlers with special needs, provide more parental choice, and are better equipped to access public and private insurance billing.
Establish a Transition Plan. We recommend the state develop a plan to help ensure continuity of services for families during the transition to a unified system. As part of the transition plan, we recommend the state allow regional centers some flexibility in contracting with schools to continue serving some infants and toddlers. We also recommend the regional centers develop transition plans for serving infants and toddlers who are deaf or hard of hearing. In addition, we recommend the state require regional centers to follow established best practices to ensure smooth transitions to preschool.
New System Would Produce State Savings. Though we recommend transitioning to a new system for the direct benefits it would have for infants and toddlers with special needs, a unified system under the regional centers also would generate state savings. We estimate savings in the range of $5 million to $35 million. The state could repurpose these savings for any budget priority or use them to expand or enhance early intervention services (for example, by conducting more outreach or raising associated reimbursement rates).