Early intervention is the key to setting children with delays and disabilities on a path to long-term success. Yet children of color face barriers to accessing these services.

Early intervention services are funded through a complex blend of federal, state, and local sources, and are part of the Individuals with Disabilities Education Act (IDEA). States have to make difficult decisions about how to fund critical IDEA services, including early intervention services, because Congress vastly underfunds IDEA. This often results in stricter eligibility requirements and other cost-saving measures that sometimes lead to a decrease in the number of children receiving services.

There are several strategies states can use to address systemic racial inequities in the health and education systems in which early intervention services take place. In this report, we identify the strengths of state approaches and opportunities for increasing equity in providing early intervention services.

What is early intervention?

Every child from birth to age 3 in the U.S. is entitled under the Individuals with Disabilities Education Act (IDEA) (IDEA Part C) to support in reaching developmental milestones if they have a developmental delay — that is, if they are meeting milestones more slowly than expected, or if they have a diagnosed condition that has a high probability of resulting in a delay.

These early intervention (EI) services can have an enormous impact on a young child’s ability to learn and grow by supporting their family in assisting their child’s development and by strengthening physical, cognitive, communication, adaptive, and social-emotional skills.

These services are provided not only for a child with a developmental delay, but also for the child’s family, ensuring that caregivers have the tools they need to create a healthy, supportive environment for the whole family.

Funding for IDEA

Federal funding for IDEA is far too low: Congress has always vastly underfunded these critical services. Early intervention services are part of the Individuals with Disabilities Education Act (IDEA). When it passed IDEA, Congress pledged to fund 40% of the extra money needed to provide special education services such as early intervention services; state and local funding was supposed to cover the rest. However, Congress has yet to fund its promised share of the cost. Even though the number of children receiving services under IDEA has increased by 25% in the past two decades, federal funding covers only about 15% of this cost. [1]

What do we know about equity in early intervention?

Limited public data about recipients and potential recipients of early intervention services paints an incomplete picture of the extent of racial and ethnic inequities in access to such services. States are required by the federal government to collect, report, and publish some information about children who are found eligible for early intervention services, as well as recipients of those services, and some of this information is disaggregated by race, ethnicity, and gender, but is not disaggregated by income level or dual language learner status.[2]

Children of color who could benefit from early intervention evaluation and services often do not have enough access to them: Black and Latino children tend to be identified as eligible for these crucial services later than their White peers, and too often, fail to receive the evaluations and services for which they are eligible.

Access to developmental screening is uneven from state to state. A key tool for identifying young children with a developmental delay is developmental screening. If a screening tool indicates that a child may have a developmental delay, the family is referred for an evaluation to determine whether they are eligible to receive Part C early intervention services. ZERO TO THREE’s State of Babies Yearbook 2020 found that nationwide, only 3 out of 10 (31.1%) children ages 9 months through 35 months received a developmental screening during the preceding, pre-pandemic year. [3]

There are disparities in access to developmental screening for families with low incomes. The 2020 Yearbook found that babies from non-low-income backgrounds were 26% more likely to have a developmental screening than babies from low-income backgrounds. These rates varied greatly from state to state.

For families of color, access is even more limited. The probability of a child being identified as having a developmental delay and using early intervention services is drastically different depending on their race and ethnicity. Compared to their White peers with developmental delays,

  • Black children with developmental delays are 44% less likely to be identified as such and receive services;
  • Latino children with developmental delays are 78% less likely to be identified as such and receive services.[4]

This racial disparity was particularly pronounced among children qualifying for services based on developmental delays that were more difficult to detect and required observational assessment, indicating that there are racial inequities in timely access to screening, attention to potential developmental concerns, and resources within health and education systems.

Early intervention services set young kids with delays and disabilities and their families on the course for long-term success. Systemic racism in health and education systems and insufficient federal funding for IDEA Part C threaten access to these services. Better data can help us measure equity and ultimately ensure that families of color gain access to the high-quality early intervention services they deserve.

▼ SCREENING
▼ EVALUATION
▼ EARLY INTERVENTION SERVICES

The Impact of COVID-19: A Survey of States

The COVID-19 crisis has made delivering early intervention services much more challenging and could potentially exacerbate racial inequities in health and education systems. But we can only fix what we can measure – so it is vital that states collect and report better data.

Just as schools are working to appropriately address K-12 students’ unfinished learning caused by the pandemic, early intervention systems are focusing on addressing the missed opportunities the pandemic created for young children and their families. Young children missing these opportunities for early intervention services are potentially at greater risk of significant developmental and learning delays. By centering equity, states can identify ways in which they can better serve families of young children of color now and after the pandemic is over.

To find out how states are responding to the pandemic, we sent a survey to all state coordinators of early intervention services in fall 2020, and 29 responded throughout September and October. [5] Our survey focused on Black and Latino families, families with limited English proficiency, and families with low incomes, and asked questions about referral rates, wait times from referral to evaluation, service rates, and state guidance since the beginning of the pandemic.

Given that traditionally underserved families have faced particular difficulties during the pandemic, we asked coordinators specifically about children from Black and Latino families, children from families with limited English proficiency, and children from families with low incomes.

Here’s what we found:

Referral Rates

Since the pandemic began, referral rates have dropped.[6] We wanted to know how referral rates had changed for Black and Latino families, families with limited English proficiency, and families with low incomes, but there was not enough data to determine that nationally, because many states do not collect disaggregated data. While several coordinators noted that this type of data would be helpful, many noted that their states have neither the data infrastructure, nor the protocols and training in place to collect and analyze it. The 29 survey respondents also reported the following:

  • Since the pandemic began, referral rates for Black and Latino families and families with limited English proficiency have dropped in five states.
  • Referral rates for families with low incomes also dropped in four states.
  • However, there was wide variation in the data, and many states did not have data to report:
    • 12 states did not have data to report regarding Black and Latino children,
    • 13 states did not have data to report on families with limited English proficiency, and
    • 15 states did not have data to report on families with low incomes.

Wait Times From Referral to Evaluation

Since the onset of the pandemic, many children have had to wait longer than usual to receive an evaluation and to establish eligibility for early intervention services. We wanted to know how wait times have changed for Black and Latino families, families with limited English proficiency, and families with low incomes, but there was not enough data to determine that nationally. Once again, several coordinators noted that while this type of data would be helpful, their states have neither the data infrastructure nor the protocols and training in place to collect and analyze it. The 29 state coordinators who responded to our survey reported the following:

  • Ten states have had an overall increase in wait times amid the pandemic, four reported no significant change, and two reported a decrease. [7]
  • Among the five states that had data disaggregated by demographic group, the average number of days between a child’s referral and evaluation increased for Black and Latino families, families with limited English proficiency, and families with low incomes. However, there was wide variation in the data, and 18 states did not have data to report.

[i] Four states reported that they did not collect this data; two reported that they had collected it but not yet analyzed it; and seven did not respond to this survey question.

Early Intervention Service Rates

Since the start of the pandemic, fewer children have received early intervention services. We wanted to know how service rates have changed for Black and Latino families, families with limited English proficiency, and families with low incomes, but there was not enough data to determine that nationally. Several coordinators noted that while this type of data would be helpful, their states have neither the data infrastructure nor the protocols and training in place to collect and analyze it. The 29 state coordinators who responded to our survey reported the following:

  • Since the pandemic began, overall early intervention service rates have decreased in 15 states and were higher in one state.[8]
  • Since the pandemic began, early intervention service rates have dropped for Black children and children from families with limited English proficiency in five states, Latino children in seven states, and children from families with low incomes in four states.
  • Service rates did not change for Black children in nine states, Latino children in seven states, children from families with limited English proficiency in five states, and children from families with low incomes in three states.
  • However, many states did not have data to report:
    • Seven states did not have data to report regarding Black and Latino children,
    • 11 states did not have data to report regarding children from families with limited English proficiency, and
    • 14 states did not have data to report regarding children from families with low incomes. [9]

Recommendations

The federal government is providing states with unprecedented amounts of funding for young children and families through the American Rescue Plan, and states can apply portions of this funding toward more equitable early intervention services, including $250 million for IDEA Part C, $1 billion for Head Start/Early Head Start, and $150 million for the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program. States should use these funds, combined with pre-existing funding streams, to increase access to equitable early intervention services for young children and families. States can also act in the following ways to capitalize on lessons learned and make services more equitable as they address missed opportunities for early intervention during the pandemic:

Collect and publicly report better data

States should collect and publicly report early intervention data that is disaggregated by race/ethnicity, income level, and dual language learner status, and provide the infrastructure to do so seamlessly.

  • States should link early intervention, preschool, K-12, and postsecondary data in order to optimize learning outcomes throughout students’ education.
  • States should also collect and publicly report more data that’s specific to Child Find activities and referral processes; having referral and screening counts, disaggregated by geographical region, type of referral or screening setting (e.g., physician’s office, early care and education center, family member, etc.), family race/ethnicity, income level, and English proficiency status could help improve these activities and processes. The U.S. Department of Education and Congress require data collection on activities that take place once a child is found eligible for services, but data on Child Find activities prior to eligibility determination should also be required and disaggregated by race/ ethnicity and income level.
    • States should use tools like the Office of Special Education Programs’ (OSEP’s) Child Find Self-Assessment to determine whether they are implementing best practices related to Child Find and referral processes for children of color, and build ways to monitor these practices through data collection.
    • The Center for IDEA Early Childhood Data Systems (DaSy), which is a federally funded technical assistance center supporting early childhood special education data, published a helpful list of Part C data considerations during the COVID-19 crisis, including considerations for data at the system, family, and child levels, and considerations for data collection, analysis, and reporting. States can use these ideas to ensure they can identify trends that have occurred during the pandemic in order to formulate strategies to target pandemic-related challenges.
  • Promising practices
    • Delaware has consolidated its screening system, so the state can now measure screening rates and trends across districts.
    • Nebraska’s Developmental TIPS program (Tracking Infant Progress Statewide), may be a specialized data system, but it is a useful model for statewide developmental datacollection and tracking. Created collaboratively by the Nebraska Departments of Education and Health and Human Services, the system gathers data on infants in neonatal intensive care units (NICU), and monitors their development from the time of NICU enrollment and screening through referral and follow-up procedures up until children are 3 years old.
    • Massachusetts’ Pregnancy to Early Life Longitudinal (PELL) Data System collects data on all children who are screened, evaluated, and referred for Part C services and links it to birth certificates, hospital records, and a bevy of other data related to prenatal and postnatal health. This system is a collaboration between the Massachusetts Department of Public Health, the Boston University School of Public Health, and the Centers for Disease Control and Prevention.

Give evidence-based guidance

States should give Part C coordinators and related agencies clear guidance on conducting virtual Child Find, evaluation and assessment, and Part C service delivery — particularly with regard to families without reliable internet and families with limited English proficiency. State guidance should build on federal guidance and technical assistance resources. Since our survey was conducted, guidance has substantially increased, allowing for states to be able to share resources and promising practices with one another and to be prepared for future situations in which remote service delivery will be necessary. Early Childhood Technical Assistance Center, for instance, provides a multitude of guidance on various aspects of remote service delivery.

  • Promising practice
    • Connecticut’s early intervention agency, for instance, has a webpage that lists several resources on providing services virtually, and the webpage was available in fall 2020

Learn from bright spots

States should incorporate successful practices that others have used and adapt them to fit their own needs for regular early intervention work going forward.

  • Promising practices could be gleaned from conferences, webinars, partnerships with professional organizations and higher-education institutions, and/or other professional development opportunities in which success stories are shared and discussed. States should examine:
    • the early intervention experiences of families of color, families with limited English proficiency, and families from low-income backgrounds amid the pandemic to help determine which supports might be needed as they emerge from the pandemic and in future crises;
    • the efficacy of evidence-based models used during the pandemic and applications for future use in virtual settings and future crises;
    • the validity and efficacy of evaluation and assessment tools in virtual settings to determine how processes could be improved for virtual application in future crises or in general practice; and
    • coaching models used during the pandemic to determine which models, and which aspects of various models, were most effective when used virtually.
  • Some state coordinators reported that virtual service delivery provided better access to some families, and/or better family coaching opportunities. States should, therefore, consider incorporating virtual service delivery into their permanent delivery systems. In doing so, states should make home broadband access more equitable to address the disparities in technological access that state coordinators reported. Before the pandemic, home broadband access was available to 79% of White families, versus only66% of Black families and 61% of Latino families. States should assist providers and eligible families in administering and accessing the Emergency Broadband Benefit and other, similar programs where possible. States should also use funding from pandemic relief legislation to provide technology to families who need it. For instance, the American Relief Plan includes money for the MIECHV program to provide technology to families who need it for virtual home visits. States should offer training to families on how to access the internet and how to use various applications and/or other technology for virtual home visits. To make digital equity sustainable, states should partner with internet providers to make home broadband more accessible and affordable in the long term.

Strengthen Child Find

Conducting Child Find activities has become more challenging amid the pandemic — particularly so in its early stages — so states should increase their investment in Child Find activities in the coming year, as it is likely that many children who are eligible for early intervention services have not been identified. Given prior research showing that Black and Latino children are under-identified even in non-pandemic times, states should target funding and innovate strategies for locating and identifying children of color who are potentially eligible. Universal screening is one way in which states could potentially reduce racial disparities in Child Find access.

Make “at-risk” children eligible for IDEA Part C services. (4)

Only six states actually do so, meaning that many children who would likely benefit greatly from services are not eligible for them and are missing out on important interventions that would strengthen their development. Including “at-risk” children in Part C eligibility and investing early in their growth would not only improve their developmental outcomes and mitigate future learning and behavioral challenges, but reduce special education costs as these children enter elementary school. More federal funding for IDEA would likely increase the number of states that would include “at-risk” children in Part C eligibility.

Strengthen guidance and policies for reaching families with home languages other than English

While some states have issued guidance, provided interpreters, and conducted virtual sessions successfully for families with home languages other than English, several coordinators indicated that there were insufficient supports to help locate families who were potentially eligible for services, deliver timely evaluations and assessments, and successfully provide services to them. States should consider the challenges that early intervention professionals face and the promising practices they are using while working with these families amid the pandemic, evaluate and take stock of state resources for culturally and linguistically competent early intervention practices, and strengthen guidance and policies. States that have collected useful resources and had success should share promising practices and resources with other states.

Prepare for higher post-pandemic referral rates, including in preschool and early elementary school

Given that referral rates have dropped amid the pandemic, it is likely that referral rates will rise once young children return to early childhood education settings and visit pediatricians more regularly. Higher referral rates are also likely for children who were preschool age during the pandemic and are, or soon will be, transitioning to kindergarten. In fact, under-identification amid the pandemic could produce a surge of referrals in elementary schools in the coming years. What’s more, children who were found eligible for services before the pandemic, but have been unable to regularly access services amid the outbreak, may require additional services once in-person programming resumes. States should invest in more early intervention and early childhood special education teachers and specialists. Prior to the pandemic, there was already a steady decline in the supply of special education teachers, resulting in higher student-to-teacher ratios in special education. Strengthening the special educator pipeline will be critical as in-person early intervention and early childhood special education resumes.

  • States should increase special education funding and provide dedicated funding for special education in preschool.
  • States should require that all state-funded preschools use inclusion-based models that integrate children with and without disabilities and provide professional development for general education preschool teachers in inclusion-based practices.
  • States should provide financial incentives for districts to recruit and increase compensation for special educators working in early childhood and elementary schools and provide service scholarships and loan forgiveness programs for special education trainees.
  • States should immediately support Part C and Part B, Section 619 Coordinators through increased funding for strengthening Comprehensive Systems of Personnel Development and other strategies for recruitment and retention of early childhood intervention and early childhood special education personnel.
  • States should adopt short-term strategies for handling shortages of special education teachers, such as providing training for paraprofessionals and other skilled professionals through Grow Your Own programs. The Collaboration for Effective Educator Development, Accountability, and Reform (CEEDAR) Center at the University of Florida offers short-term strategies for handling shortages of special education teachers.
  • States should encourage higher education institutions to participate in programs that are aimed at increasing the diversity and recruitment of special educators, such as the American Association of Colleges for Teacher Education’s (AACTE) Reducing the Shortage of Special Education Teachers Networked Improvement Community.
  • States should provide guidance and funding for districts to offer frequent, ongoing, culturally and linguistically competent professional development to general education teachers on supporting students with developmental delays and disabilities.

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How can early intervention programs be improved to advance equity?

Early intervention is the key to setting children with delays and disabilities on a path to long-term success. Yet children of color ad children from low-income backgrounds face barriers to accessing these services.

There are several strategies states can use to address systemic racial inequities in the health and education systems in which early intervention services take place. In this report, we identify the strengths of state approaches and opportunities for increasing equity in providing early intervention services.

For more details on these recommendations, download the full report.

Footnotes:

[1] This does not include short-term pandemic-related federal funding for IDEA. National Center for Learning Disabilities, “IDEA Full Funding: Why Should Congress Invest in Special Education?” https://ncld.org/news/policy-and-advocacy/ideafull-funding-why-should-congress-invest-in-special-education/.

[2] U.S. Department of Education, 2020, “42nd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2020,” https://sites.ed.gov/idea/files/42nd-arc-for-idea.pdf; IDEA Data Center, October 2018, “IDEA Section 618 Public Reporting Data Element Checklist – Part C,” https://ideadata.org/sites/default/files/media/documents/2018-10/IDC_618_Interactive_Part_C_0.pdf.

[3] ZERO TO THREE, “State of Babies Yearbook 2020,” June 2020, https://stateofbabies.org/wp-content/uploads/2020/06/Stateof-Babies-2020-Full-Yearbook-061820.pdf.

[4] Dawn M. Magnusson, Cynthia S. Minkovitz, Karen A. Kuhlthau, Tania M. Caballero, and Kamila B. Mistry, “Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers,” Pediatrics 140 (5): e20172059 (2017), https://doi.org/10.1542/peds.2017-2059;

Dawn M. Magnusson, Mari Palta, Beth McManus, Ruth E. Benedict, and Maureen S. Durkin, “Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data,” Academy of Pediatrics 16 (2): 145-53 (2015), https://pubmed.ncbi.nlm.nih.gov/26183004/; Emily Feinberg, Michael Silverstein, Sara Donahue, and Robin Bliss, “The Impact of Race on Participation in Part C Early Intervention Services,” Journal of Developmental and Behavioral Pediatrics : JDBP 32, no. 4 (May 2011): 284–291, https://doi.org/10.1097/DBP.0b013e3182142fbd.

[5] 62 Part C coordinators representing 58 states, territories, and jurisdictions received the survey. The outlying jurisdictions Federated States of Micronesia, Marshall Islands, and Palau are not eligible to receive Part C funds and therefore were not sent surveys. Due to the anonymity of the survey, we do not know which coordinators comprise those who responded.

[6] Since March 13, 2020, which is the day the COVID-19 pandemic was declared a national emergency.

[7] Four states reported that they did not collect this data; two reported that they had collected it but not yet analyzed it; and seven did not respond to this survey question.

[8] One state had collected this data but not yet analyzed it, and 12 states did not respond to this survey question.

[9] One state had collected data for each of these child populations and had not yet analyzed it.