EARLY INTERVENTION SERVICES
WHAT ARE EARLY INTERVENTION SERVICES AND WHY ARE THEY IMPORTANT?
Part C of the Individuals with Disabilities Education Act (IDEA) provides funds for states to establish Early Intervention (EI) programs, which offer services for infants and toddlers (birth to age 3) with disabilities or developmental delays, regardless of family income.1 States must develop a set of eligibility criteria and then identify, evaluate, and provide appropriate services and therapies to all children who meet the state’s thresholds for delays, disabilities, or risk for delayed development. State EI programs have a variety of names (e.g., “Birth to Three” in Connecticut, “Early Childhood Intervention” (ECI) in Texas, and “First Steps” in Kentucky), but the Roadmap uses Early Intervention or EI for consistency across states.
Access to EI Services Can Prevent Further Delays and Reduce the Need for Special Education Services
Access to EI services (such as speech therapy for a child with language delays, or physical therapy for a child with motor challenges) can improve the developmental trajectories of infants and toddlers and prevent further delays. Timely services may also reduce the need for special education or more intensive supports when children are older.2 Family-centered services that involve parents have been shown to be more effective than therapies for children alone3 because caregivers can learn how to interact with and care for their child in a way that will best support the child’s development.
EI Services Can Save States Money in the Long Run
A recent analysis of six states found that Early Intervention services helped between 760 and 3,000 children per state to avoid special education services at age 3, with a 1-year cost avoidance of between $7.6 million to $68.2 million depending on the state.4 Three-year cost avoidance estimates, which accounted for children re-entering special education services after an initial exit, still projected substantial cost savings.5
State EI Programs Face a Variety of Challenges, Including Inadequate Funding and Inequities in Children’s Access
The number of children enrolled in Early Intervention services has consistently trended upwards in the past two decades, but federal per-child Part C funding has declined, requiring greater state support for services.6 State leaders consistently report that ensuring adequate funding remains one of the most critical challenges for their EI programs.7
The percentage of children ages birth to 3 who are served (on both a point-in-time and cumulative basis) varies significantly across states,8 in part because of differences in state eligibility policies;9 states’ outreach efforts to hospitals, child care centers, and other organizations;10 and resource availability.11
Children from lower-income families and communities of color do not have equitable access to EI services.12 The most recent national data show that 6.2% of Black children ages birth to 3 are served in EI over the course of a year, compared to 7.2% of White children.13 A widely cited study found that by 24 months old, Black children identified as likely eligible for EI were five to eight times less likely to receive services than White children, depending on the reason for eligibility.14 A study of low birthweight infants found significantly lower EI referral rates for infants of Black non-Hispanic mothers than all other racial groups.15 These inequities in EI access may contribute to disparities in children’s later outcomes.
States also vary in how consistently they refer children who have experienced abuse and neglect to EI programs. A study of children ages birth to 3 involved in child welfare investigations estimated that over 35% had delays or risk factors that would make them eligible for EI services, but only 12.7% of those in need were receiving services.16
WHAT IMPACT DO EARLY INTERVENTION SERVICES HAVE?
The most rigorous evidence suggests that Early Intervention services can improve children’s outcomes in areas including cognitive development, language/communication skills, behavior, and motor skills. Other evidence suggests some positive outcomes for parental health and wellbeing such as maternal self-confidence and role satisfaction.
HOW AND WHY DO EARLY INTERVENTION SERVICES VARY ACROSS STATES?
In contrast to the evidence for the five state-level policies that are included in this Roadmap, the current evidence base does not identify a specific policy lever that states should adopt and fully implement to effectively provide Early Intervention services to all the children who need the services. In the absence of an evidence-based state policy lever to ensure EI services effectively provide children and families the support they need, we present several choices that states can make to more effectively implement their EI programs. Additionally, we leverage available data to assess state variation in EI services across a range of factors to identify the leaders among states in implementing their Part C programs, and to demonstrate what progress states are making relative to one another.
State Leaders in EI Services:
- Serve a high share of their infants and toddlers relative to other states;
- Allow children with less severe delays to qualify for EI services and allow children to qualify through a wide variety of medical conditions and risk factors, which may include low birthweight and prematurity;
- Access a variety of funding streams beyond the federal Part C allocation to ensure that sufficient resources are available to provide eligible infants and toddlers with timely therapies and treatments; and/or
- Foster collaboration with other state agencies and systems.
State Policy and Administrative Choices Affect the Implementation of Early Intervention Programs
State EI programs vary considerably in the percentage of children under age 3 who are served, their eligibility criteria, the funding streams states access to support their programs, the level of collaboration between Part C programs and other state agencies, such as Medicaid and child welfare, and in other ways that have implications for the strength of a state’s program.
The Percentage of Children Served by Early Intervention Services Is the Most Consistent Measure to Compare States’ Success
The share of children served is one of the only indicators allowing for a consistent, meaningful comparison of states’ EI programs across the country; in most other ways, states’ programs are so different and context-dependent that it is difficult to compare them to one another meaningfully based on a single indicator.
Several factors influence the percentage of children that states serve in EI over the course of a 12-month period, including states’ eligibility criteria and the resources states marshal (funding and personnel) to identify, evaluate, and serve children.
Available state data show the percentage of children served in EI out of all infants and toddlers ages 0 to 3, but do not indicate the percentage of children served out of those who are eligible or in need of services. National research suggests that the prevalence of children under age 3 with delays and disabilities whose development could improve with EI services is between 13% and 20%.17
States Vary Considerably in the Percentage of Children Under Age 3 Served in EI
Recent national data show that 6.9% of children in the US under age 3 received any EI services over a 12-month period, but this percentage varies considerably by state, from a low of approximately 2% in Arkansas to a high of nearly 21% in Massachusetts. Eight states serve 10% or more of infants and toddlers in EI services, and 10 states serve 5% or fewer over the course of a year.
When EI service rates are calculated using a point-in-time approach, rather than a cumulative count over a full year, the national percentage of children served is 3.2%. States range from serving less than 1% (Hawaii and Arkansas) to 10.5% (Massachusetts) of their birth-to-3 population on any given day. We use the cumulative, rather than point-in-time data in this Roadmap based on recommendations from national experts in Early Intervention.18 The cumulative data capture services received throughout the year, rather than just services provided on the day that a point-in-time count occurred.
Rates of low birthweight can serve as a proxy for different levels of need across states, because research shows that low birthweight is a risk factor for the kinds of delays and disabilities that may improve if children receive EI services.19
Disparities in Rates of Low Birthweight Across Race and Ethnicity Can Shed Light on the Disproportionate Need for EI Across Race and Ethnicity
Most states require very low birthweight (less than 1,500 grams), or extremely low birthweight (less than 1,000 grams) to qualify for EI. The rate of low birthweight (based on a standard of 2,500 grams) by race and ethnicity may serve as a rough proxy to indicate variation in the need for EI across race and ethnicity.
In the US, Black children are substantially more likely to be born low birthweight than White or Hispanic children, so if access to EI services was equitable, a relatively higher percentage of Black children should receive EI services compared to their White or Hispanic counterparts. Yet, a smaller percentage of Black children actually receive EI services. Nationally, only 6.2% of Black children ages 0 to 3 are served in EI over the course of a year, compared to 7.2% of White children. Hispanic children are served at a rate of 7.1%, and children classified as “Other” for race/ethnicity are served at a rate of 5.6%.
States’ Eligibility Criteria for Early Intervention Services Can Be More Inclusive to Serve Children at Risk for Developmental Delays
States set specific thresholds for developmental delays (e.g., a 30% or greater delay in one or more developmental areas) and self-declare whether their eligibility criteria are broad (most inclusive, serving less severe delays), moderately inclusive, or narrow (requiring the most severe delays). Using a broad eligibility threshold means that a state may serve children with less severe delays than states that report moderately inclusive or narrow criteria, but states with broader eligibility criteria do not necessarily serve more children than states with more restrictive criteria. A total of 15 states report broad criteria, 22 report moderately inclusive criteria, and 14 report narrow criteria. However, within each of these self-declared categories, the specific thresholds and requirements vary.
In addition to developmental delays, children may be eligible for EI based on a state’s unique list of qualifying diagnosed/established conditions (often including very low birthweight and prematurity, at various thresholds). A total of 33 states qualify children born low birthweight for EI (using various thresholds, often requiring very low birthweight of <1,500 grams, or approximately 3 pounds and 5 ounces) and 22 states qualify children born premature (often requiring very preterm or extremely preterm birth, born earlier than 32 or 28 weeks).20 However, some states with high rates of low birthweight or prematurity do not include these conditions as part of their EI eligibility policies.
Allowing children to qualify based on medical conditions is important for serving the youngest infants, who may not show developmental delays until later. Six states (California, Florida, Massachusetts, New Hampshire, New Mexico, and West Virginia) report to the federal government that they choose to serve children who are at risk for delays or disabilities, even if children do not have an established delay or disability. Each of the six states has a specific list of risk factors that can qualify a child for EI services, and the states can determine how many risk factors children must have to qualify (some states require five or more risk factors to be present simultaneously, for example). Some of these risk factors include social circumstances such as low income or homelessness, but others are more clinical, such as low Apgar scores or prenatal drug exposure.
States can also choose whether at-risk children can receive services for the entire 0-to-3 period, or only until a certain age. These states may also limit which EI services at-risk children can receive, and for how long, to ensure that sufficient resources remain available for children with established delays and medical conditions.
Other states may serve children who are at-risk based on their state policies, but may not report this practice to the federal government in the same way as the six states listed above.21
States Can Use a Variety of Funding Streams to Support EI
In addition to eligibility criteria that are inclusive of children with less severe delays and children at risk for delays, the available resources that states can marshal to support EI are critical to serving a higher percentage of children. Part C federal funds allocated to states are intended to supplement, not supplant, state resources, and therefore, most states access a variety of funding streams beyond the federal Part C allocation to serve more children. The portion of federal Part C funds awarded to each state is based on the number of children under age 3 in a state as compared to other states, rather than based on the number of children actually served in EI, and therefore, states that serve more children than other states typically must invest more of their own state resources.22
Over time, as the federal per-child amount has declined, states have begun to invest more of their own state resources, and many have set up the necessary infrastructure to allow EI programs to bill private insurance and have reduced or eliminated the collection of family fees.
States vary in whether they primarily rely on federal funding, state resources, or local funding to support their EI systems. In a 2021 survey, a total of 32 states (out of 49 that responded) reported that they rely most heavily on their own state resources to sustain their EI programs. In the survey, 17 states reported that they rely to some extent on family fees to pay for services (Connecticut’s legislature eliminated family fees through S.B. 2 after the survey, bringing the count to 16 states), whereas most states do not report this practice. If states can leverage sufficient funding from other sources and eliminate the use of family fees, this may help more low-income families to access EI services.23
In the survey, 31 states reported billing private insurance to cover EI services, which can free up public funding to serve children without private coverage. Five states (Iowa, Maryland, Michigan, Minnesota, and Nebraska) are designated as “birth mandate” states, which means that children with disabilities are guaranteed free public education services from ages 0 to 21, including EI services from ages 0 to 3 for those eligible, and family fees are therefore prohibited.24
Maximizing Medicaid Funding Is a Cost-Effective Approach to Serve More Children
One of the most important funding sources for EI services is Medicaid,25 and states vary in the extent to which they take advantage of Medicaid funding to support their EI programs.26 States that have fostered closer partnerships between their Medicaid agencies and Part C programs have been able to increase the number of children they serve.27 For example, states may cross-reference Medicaid and Part C data to identify children in Part C who are also eligible for Medicaid, to ensure that their EI providers bill Medicaid.28 This practice can free up other funding streams to allow states to serve more children who are not Medicaid-eligible.
States’ efforts to maximize Medicaid are critical because Part C federal funding to the states is based on a state’s overall infant/toddler population, whereas federal Medicaid matching funds are not limited in this way.29 Per the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) provision in federal law, Medicaid-enrolled children under age 21 are entitled to any services that are deemed “medically necessary” by a qualified provider, and this may include EI services.30
Collaborations Among Multiple State Agencies Can Promote More Seamless Services for Children
In addition to fostering collaboration with Medicaid, states whose Part C programs work closely with other agencies, including child welfare and state public education systems, have been able to ensure that children experiencing maltreatment receive the services they need, and ensure that children experience a more seamless transition from Part C to special education services at later ages, respectively.
Children involved in the child welfare system have been found to be at increased risk for developmental delays given the effects of physical and psychological maltreatment.31 The federal Child Abuse Prevention and Treatment Act, or CAPTA (passed in 1974 and amended numerous times since) requires that states develop processes and procedures to refer children who have experienced substantiated abuse or neglect to EI programs.32
States vary in how consistently they make these referrals. Only nine states report that they refer 100% of eligible children who have experienced substantiated maltreatment to Part C agencies, based on 2020 federal data, and half of states were not able to report any data on their referrals.33 States have discretion to refer children in substantiated cases directly to an evaluation, or to instead require that child welfare systems do a pre-screening to determine whether an EI evaluation is necessary. In a 2020 survey, only 12 states reported that they refer children directly to an evaluation, without requiring a pre-screening.34
WHAT PROGRESS HAVE STATES MADE IN THE LAST YEAR TO MORE EFFECTIVELY IMPLEMENT EARLY INTERVENTION SERVICES?
States have substantial latitude in how they implement their EI programs. Over the last year, several states took legislative or administrative action to enhance their EI services, specifically through increasing access to EI services for many families and improving the funding of their programs.
Examples of states that expanded access to services include California, which enacted legislation to add a sixth eligibility criterion for infants and toddlers to include both expressive and receptive communication development and change the definition of a significant difference to require a 25% delay in one or more of those developmental areas. The law clarifies that fetal alcohol syndrome is a condition with established harmful developmental consequences for purposes of EI eligibility. The changes became effective June 30, 2022.
Delaware enacted legislation to create a career-based student loan repayment program and promote and support high-demand career fields, including speech/language pathology within birth-to-3 EI. The law took effect July 1, 2022. The legislature also introduced a bill to ensure lead screening data are disseminated to providers, including early intervention professionals, to provide a better opportunity to assist infants and toddlers with different levels of lead exposure, which died when the legislative session ended.
Illinois enacted legislation to initiate EI services more quickly. The law requires all early intervention services to be initiated as soon as possible, but not later than 30 calendar days after the consent of the parent or guardian has been obtained for the child’s individualized family service plan. The law took effect July 1, 2022.
Massachusetts leads all states in its share of birth-to-3 population served over the course of a year (20.7%). In 2022, the Massachusetts legislature recommended two bills for further study to promote equitable outcomes in early intervention by eliminating disproportionality and inequities for at-risk children and requiring annual reporting of outcome data for children’s services, including EI, disaggregated by race, ethnicity, gender, region, and income. As of October 1, 2022, the legislation is pending in committee.
New Jersey introduced legislation urging the Governor and Department of Health to include at-risk infants or toddlers in New Jersey’s Early Intervention System and noting prevalence of issues such as serious neonatal illness, homelessness, low birth weight, abuse or neglect, and maternal postpartum depression as risk factors for developmental delays. As of October 1, 2022, the bill was still pending in committee.
Pennsylvania legislators amended and re-referred to the Appropriations Committee legislation that would expand early intervention services for infants and parents. S.B. 200 would add postpartum depression to other at-risk categories that qualify infants and toddlers for Early Intervention tracking, assessment and care. As of October 1, 2022, the bill was still pending in committee. And finally, Rhode Island appropriated $5.5 million to providers in response to a decline in enrollment for early intervention, family home visiting, and screening programs.