California Can Better Support Infants & Toddlers with Disabilities or Developmental Delays

All infants and toddlers and their families should have access to a comprehensive set of services that support their health and development. This is especially important for children who experience delays in their development, such as when they’re not playing, learning, speaking, eating, or moving when expected in their early years, which can be a cause for concern.

When families have timely access to early intervention services, they can better meet their children’s needs during their earliest years and throughout their lives. Access to quality health and developmental services promotes a child’s growth and development and supports their families as they learn and live across California communities.

This report provides 5 key facts about the Early Start program, California’s early intervention system, and outlines steps policymakers can take to better support children and their families.

1. California Provides Early Intervention Services to Thousands of Children Through a Network of Regional Centers

California’s Early Start program serves a diverse population of infants and toddlers with developmental disabilities throughout the state. In 2020-21, more than 75,000 children from birth through age 2 with developmental delays and disabilities were determined eligible for early intervention services by regional centers.¹ Regional centers are nonprofit agencies that coordinate services for infants and toddlers as well as for school-aged children and adults. Fiscal year 2020-21 is the most recent year for which data on the infant and toddler population are available. Data include all eligible infants and toddlers, regardless of whether the regional center paid for intervention services or not. Additionally, these data may include duplicate counts if consumers received services from more than one regional center during the fiscal year.

Regional centers serve a racially and ethnically diverse population of infants and toddlers. The largest group of eligible children are Latinx, making up nearly half (46%) of all eligible infants and toddlers. Families with children who identify as multi-race or a race or ethnicity considered “other” on administrative forms are the second largest group of eligible children (21%), and white children make up the third largest group (20%). American Indian or Alaska Native, Asian, Black, and Native Hawaiian/other Pacific Islander children, together, represent approximately 14% of all infants and toddlers served by regional centers.²Counts and percentages for race and ethnicity groups exclude Inland Regional Center (IRC) because IRC was unable to provide valid data by race and ethnicity. Moreover, the percentages shown in this paragraph do not sum to 100 due to rounding.

Families served by regional centers speak many languages. Across all regional centers, the most common languages that families speak are English, Spanish, and Vietnamese. English and Spanish are by far the two most-spoken languages, but the third most common language varies depending on the regional center. For example, in San Diego, the top three languages are English, Spanish, and Arabic.

Given the cultural and linguistic diversity among California families, regional centers should be equipped with the staff and other resources that respond to the unique needs of the state’s diverse population.

2. Spending to Support Infants and Toddlers with Disabilities or Developmental Delays Has Been Relatively Flat

Funding to support early intervention services through California’s Early Start program comes from the state and the federal government. In 2022-23, the state funded about 90% of services.³“Services” refers to the “purchase of service” authorization, utilization, and expenditure for infants and toddlers, which excludes infants and toddlers who are deemed eligible but do not receive services. Welfare and Institutions Code, Division 4.5, sec. 4519.5, https://leginfo.legislature.ca.gov/faces/codes_displaySection.xhtml?lawCode=WIC&sectionNum=4519.5. This is mainly because the federal government, which provides funding through the Individuals with Disabilities Education Act (IDEA), has historically underfunded these services.⁴The Education Trust, Increasing Equity in Early Intervention (May 2021),  https://edtrust.org/increasing-equity-in-early-intervention/. When federal policymakers passed IDEA in 1975, they committed to fund 40% of the costs associated with providing special education services, including early intervention services, with state and local funding covering the rest. However, Congress has not fulfilled this promise.

Per capita spending to support California’s infants and toddlers with disabilities or developmental delays has been relatively flat since 2017-18.⁵Expenditure data reflect a Budget Center analysis of data from the Department of Developmental Services for fiscal years 2017-18 to 2022-23. State funds come from the General Fund, and federal funds come from IDEA and the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit. In 2020-21, per capita expenditures temporarily dropped as both the Early Start caseload and overall program spending declined with the onset of the COVID-19 pandemic.⁶ In 2020-21, Early Start expenditures fell by 22% compared to the previous fiscal year, whereas the number of infants and toddlers enrolled in the program declined by a more modest 13%. In addition to the impacts of COVID-19 on families seeking services, the pandemic affected service coordination and delivery due to a sudden switch to remote services as well as staffing shortages.⁷US Department of Education, State Performance Plan/Annual Performance Report: Part C (February 1, 2022), 7, https://www.dds.ca.gov/wp-content/uploads/2022/07/2020_Early_Start_Part_C_Annual_Performance_Report.pdf.

Current funding to support California’s infants and toddlers with disabilities or developmental delays is not enough.⁸California State Auditor, Department of Developmental Services: It Has Not Ensured That Regional Centers Have the Necessary Resources to Effectively Serve Californians with Intellectual and Developmental Disabilities (June 2022), https://www.auditor.ca.gov/reports/2021-107/index.html#QL1. Given that funding for regional centers is based on prior year expenditures as well as caseload growth and service utilization, regional centers may not receive the funding necessary to improve service access and delivery. State and federal policymakers should continue to invest in early intervention services and do so equitably.

3. Per Capita Spending for Black and Native Hawaiian/Other Pacific Islander Families Is the Lowest Compared to Other Groups

Regional centers pay for services for eligible California infants and toddlers who do not receive funding from Medi-Cal or private insurance. State law requires regional centers and the Department of Developmental Services to annually report expenditures broken out by age, race and ethnicity, language, and disability.⁹California Welfare and Institutions Code, division 4.5, sec. 4519.5.https://leginfo.legislature.ca.gov/faces/codes_displaySection.xhtml?lawCode=WIC&sectionNum=4519.5.

Regional center support for infants and toddlers across California varies by race and ethnicity. In 2020-21, regional center spending to support Black and Native Hawaiian/other Pacific Islander infants and toddlers with disabilities or developmental delays was the lowest compared to other races and ethnicities, $4,360 and $4,210, respectively.¹⁰Inland Regional Center is excluded from this analysis because they were unable to provide valid data by race and ethnicity. As a result, only 20 out of the state’s 21 regional centers are included. To provide more accurate per capita spending by regional centers, the consumer population in this analysis does not include consumers with no purchase of services. Moreover, consumer counts used to calculate per capita spending figures include all consumers who received a regional center-funded service any time during the 2020-21 fiscal year. All consumers are included in this count regardless of their status with the regional center, including those that closed their case, transferred, or are inactive. Per capita spending for other race and ethnicity groups ranged from $4,550 and $5,350, with spending being the highest among Asian infants and toddlers.

At the regional center level, spending by race and ethnicity varies substantially compared to statewide patterns. For example, per capita spending at North Los Angeles Regional Center ranges between $2,340 and $11,810, where spending for American Indian or Alaska Native children is the lowest.¹¹ Budget Center analysis of California regional center data. The state has invested dollars to implement strategies to advance equity and reduce spending disparities, but improvement is unclear.¹²Public Counsel, Examining Racial and Ethnic Inequities Among Children Served Under California’s Developmental Services System: Where Things Currently Stand (May 2022), 10, https://www.lpfch.org/sites/default/files/field/publications/2022-disparity-report_californai-developmental-services_regional-centers.pdf. Fully understanding and addressing spending disparities is crucial, and at the same time, the state should also investigate what funding levels are adequate to ensure children with the greatest needs receive the support services they need.

4. California Lags Behind Many Other States in Supporting Infants and Toddlers

An estimated 1 in 6 children in the US have a developmental disability.¹³Benjamin Zablotsky et al., “Prevalence and Trends of Developmental Disabilities Among Children in the United States: 2009–2017,” Pediatrics 144, no. 4 (October 2019): https://doi.org/10.1542/peds.2019-0811. Yet, in California, only 3% of infants and toddlers receive early intervention services.¹⁴“IDEA Section 618 Data Products: Static Tables,” US Department of Education (webpage), accessed September 19, 2022, https://data.ed.gov/dataset/idea-section-618-data-products-static-tables-part-c-child-count-and-settings-table-1/resources. In comparison, 10% of infants and toddlers in Massachusetts receive services.

The low rate of infants and toddlers receiving early intervention services in California is due to myriad factors. One major issue is that not enough children receive developmental screenings, even though all children enrolled in Medi-Cal are entitled to developmental screenings under the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit.¹⁵Alexandra Parma, Early Identification and Intervention for California’s Infants and Toddlers: 6 Key Takeaways (First 5 Center for Children’s Policy, September 2020),  https://first5center.org/publications/early-identification-and-intervention-for-californias-infants-and-toddlers-6-key-takeaways. Research suggests that California’s developmental screening rate is one of the lowest in the country (26%), which is problematic because screening is the critical first step in connecting children with early intervention services.¹⁶A developmental screening is the use of a standardized set of questions to see if a child’s motor, language, cognitive, social, and emotional development are on track for their age. Developmental screenings assess a child’s development and can be done by a doctor or nurse as well as by professionals in health care, early childhood education, community, or school settings. To learn more, see ​​​​​​”Proposition 56 ​Developmental Screenings,​” California Department of Health Care Services (webpage), accessed September 19, 2022, https://www.dhcs.ca.gov/provgovpart/Prop-56/Pages/Prop56-Screenings-Developmental.aspx; “Developmental Monitoring and Screening,” US Department of Health and Human Services (webpage), accessed September 19, 2022,https://www.cdc.gov/ncbddd/childdevelopment/screening.html.

Making matters worse, when infants and toddlers become eligible for early intervention services, the services often are not provided in a timely manner. In fact, California does not meet the requirements for implementing a component of the federal Individuals with Disabilities Education Act known as Part C.¹⁷US Department of Education, 43rd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2021 (January 2022), 222, https://sites.ed.gov/idea/files/43rd-arc-for-idea.pdf. This determination is based on a number of criteria, including if children receive services in a timely manner, receive services in the home or community-based settings, and demonstrate improved outcomes.

California should follow the example set by other states to ensure that all children with a developmental delay have access to early intervention services as early in their lives as possible. Serving more children with disabilities or developmental delays can improve outcomes for children, families, and communities.

5. California’s Early Intervention System Needs Improvement to Ensure Children and Families Receive Access to Services

California’s early intervention system seeks to support children with developmental delays or disabilities, but multiple barriers block children and families from the support they need. Regional center data show significant gaps in families’ access to available dollars for services.¹⁸The statewide utilization rate — the share of services that families actually receive based on the amount authorized in their Individualized Family Service Plan — is only 58% for children 0-2. The utilization rate is a common measure of barriers to receiving services because it shows families are only able to access a portion of available dollars for services. Budget Center analysis of California regional center data. Some research suggests that barriers can be attributed to the complexity of navigating services and workforce shortages that impact service delivery.¹⁹First 5 Center for Children’s Policy,Systems Interactions: Medi-Cal Managed Care and Other Health Care Delivery for Children on Medi-Cal (May 2021), 3, https://first5center.org/assets/files/FINAL-MMC-Cross-Systems.pdf, and Burns & Associates, Inc., DDS Vendor Rate Study and Models (May 15, 2019), 2, https://www.burnshealthpolicy.com/wp-content/uploads/2019/03/DDS-Vendor-Rate-Study-Report.pdf.

The early intervention system is convoluted and creates barriers for families. For example, children may need services from more than one provider network, and given the current payment structures, determining who pays for what may cause interruptions.²⁰ First 5 Center for Children’s Policy, Systems Interactions, 3. Families served by regional centers also identify other systemic barriers such as the lack of outreach, information, and services in their home languages.²¹State law requires regional centers to hold annual public meetings to present and discuss service expenditure data and identify strategies for improvement. Parents and other advocates at several regional centers identified ways that service access and equity could improve, including targeted outreach and more inclusion of languages other than English. For an example, see Alta Regional Regional Center’s 2020-21 report on page 11: https://www.altaregional.org/sites/main/files/file-attachments/dds_letter_2022_pos_data_meetings.pdf?1662735412.

“Payment rates, which are set by the state, are not sufficient to promote a stable service provider workforce.”

Payment rates, which are set by the state, are not sufficient to promote a stable service provider workforce.²² Burns & Associates, Inc., DDS Vendor Rate Study, 2. Historically, rates have not kept pace with policy changes aimed at improving services and have not been adjusted to account for inflation.²³ Association of Regional Center Agencies, Inadequate Rates for Service Provision in California (January 2014), 12, 26, https://www.dds.ca.gov/wp-content/uploads/2019/02/DSTF_Jan2014ARCA_20190212.pdf Moreover, rates have been subject to freezes or reductions due to budget crises.²⁴Burns & Associates, Inc., DDS Vendor Rate Study and Models, 3. Although the state has reversed budget cuts, rates are still not high enough to support a stable supply of providers, which directly impacts service delivery.²⁵ Burns & Associates, Inc., DDS Vendor Rate Study and Models, 6.

All in all, there are many factors that block California children and families from accessing early intervention services in a timely manner. California policymakers should remove all barriers that prevent families from the support services their children need to develop and thrive during their early years and beyond.

Policy Recommendations for Improving California’s Early Start Program

California can take steps to ensure all infants and toddlers and their families have access to a comprehensive set of services through the Early Start program that support their health and development, which is especially important for children who have disabilities or experience delays in their development.

Recent action by California policymakers to improve intervention services for infants and toddlers include investments in: reducing regional center service coordinator caseloads, providing technical support for service coordinators, expanding eligibility for early intervention services, and taking initial steps to reform provider rates.  

State leaders can build on these policy changes by taking action on the following recommendations: