By the time her daughter turned 3, Ramona Santos Torres noticed something not quite right about the child’s speech. The toddler babbled, but nothing she said was intelligible. She rarely made eye contact with other people. Most babies, Santos Torres knew, start to utter some recognizable words before they reach the age of 2. “We just couldn’t make out what she was saying,” Santos Torres recalled.

The mother, who lives in Providence, Rhode Island, mentioned it to her daughter’s pediatrician, who quickly dismissed the concern, saying the speech delay was because the family spoke both Spanish and English at home. “It was so frustrating how little he listened to me,” Santos Torres said. (Studies have shown that early bilingualism can in fact confer social and cognitive benefits.)

When the girl was diagnosed with autism and cognitive delays a couple of years later, it hardly felt like vindication, because Santos Torres knew that her daughter had missed crucial help during critical years of brain development. She’s now a teenager.

“We missed that window from 1 to 4, which is such a precious age,” she said. 

In 1986, the federal government mandated that states provide therapy for newborns and toddlers with developmental delays and disabilities, but the program has been dogged by severe racial gaps in access and quality since its inception. By the time they turn 2, eligible Black toddlers with developmental delays are five times less likely than similar white children to receive “early intervention” services (the name for the therapies offered from infancy to the age of 3), according to a study from public health researchers at Boston University. Moreover, recent federal data shows that more than 15 states, including Rhode Island, serve fewer than 200 Black children statewide through early intervention — a fraction of the number that experts say need the support, which can include physical and speech therapy.

The picture is mixed depending on the community, however, with Black and Latino children overrepresented in some places and underrepresented in others. But research shows that even where Black and Latino children enroll in high numbers, they have worse experiences than their white peers. That can include longer delays in finding therapists and less access to the most helpful therapies, including in-person sessions.For example, in New York state, white children were referred to early intervention at younger ages than Black and Hispanic children, according to a recent audit. The report also said Black children were less likely than white children to receive therapy in the required 30-day timeframe. 

“One of the things we consistently see in pediatrics is that children of color get less of everything,” said Katharine Zuckerman, an associate professor of pediatrics at Oregon Health & Science University who has studied racial disparities in diagnoses of autism and other disorders. “They get less antibiotics. They get less early intervention.” 

“One of the things we consistently see in pediatrics is that children of color get less of everything,”

Katharine Zuckerman, associate professor of pediatrics, Oregon Health & Science University

A growing number of parents, researchers and politicians have in recent years turned their attention to these persistent gaps, which they argue play a pivotal — and long-overlooked — role in shaping educational inequities years, even decades, after children start school. Zuckerman likens it to the law of diminishing returns: Children’s brains develop much more rapidly between birth and 5 than in any other period in their life. So a year of high-quality speech therapy, for instance, can mean much more for a 2-year-old than a 10-year-old. One study found that half of children leave early intervention functioning at a level appropriate for their age and do not require special education services in kindergarten.

Indeed, the disparities in early intervention contribute to large gaps in special education enrollment. Black and Latino students are overrepresented in many categories, experts say, partly because they are so much less likely to get the right kind of help before they start school. Consider Washington D.C.: Black children made up less than half of children receiving early intervention in 2021, but represented 76 percent of those receiving special education for school-age children. In Maryland, those figures were 31 percent and 41 percent, respectively.

Related: Online therapy for babies and toddlers with delays often works well, but the funding isn’t keeping up with the need

The growing wave of advocacy aims to combat the disparities in different ways. In Providence, a new grassroots organization co-founded by Santos Torres helped lead a successful campaign to increase funding for early intervention, recognizing that Latino and Black families often suffer more when there’s a shortage of providers and services. In Denver, pediatric clinics are trying out a new communication guide that aims to give parents from historically marginalized backgrounds more information about their child and their options — and greater input in how to move forward.

The Biden administration has drafted several budget proposals that would substantially increase federal funding for early intervention services, with a focus on expanding access for historically underrepresented communities.

 “If it was up to us every child who could benefit from early intervention would be eligible,” said Katherine Neas, deputy assistant secretary in the U.S. Department of Education. “This is the goal we are going for.”

A study found that 13 percent of infants and toddlers qualify for early intervention services, but only 10 percent of those children receive them by age 2.

Yet even past proposals that would have nearly doubled federal funding will not meet all the need without some greater investment at the state level, Neas said.

“The need, and what we are able to provide, are not in alignment—even with the significant increases that this administration has put forward,” she said. Last year, the Biden administration proposed an increase of more than $400 million for early intervention, with Congress ultimately approving a much smaller bump of $43.7 million. This year’s budget proposal will be presented to Congress March 9.

“Too many communities have very low expectations for low-income families in general, and for low-income families that have kids with disabilities the expectations are even lower,” Neas said. That’s despite the fact, she added, that the “research is quite profound in terms of what it means for a child’s life if they get early intervention services.”   

When Congress passed the federal law for early intervention, known as Part C of the Individuals with Disabilities Education Act, it gave states a great deal of autonomy. Some states operate the program through their health departments, for instance, while in other states it’s an offshoot of their education departments. And some rely more heavily on Medicaid as a funding source than others.

Across the board, early intervention is severely underenrolled. Experts estimated in a study that 13 percent of infants and toddlers have developmental delays that would qualify them for early intervention, but found that only 10 percent of those children with developmental delays received services by age 2.

The youngest babies are sometimes the most underserved: Many families, and even doctors, don’t realize that children born with conditions like Down syndrome and spina bifida automatically qualify for early intervention, as do most babies who spend time in hospital neonatal intensive care units. And those who are aware often face acute shortages of therapists. “I’ve heard doctors say they are not comfortable referring for services that aren’t available,” said Karen Berman, the senior director for Illinois policy at Start Early in Chicago, which advocates on early childhood issues. In Illinois, a survey at one hospital found that about 85 percent of babies referred for early intervention at the neonatal intensive care unit hadn’t connected with services by their 3-month checkup.

The pandemic has hardly helped the situation, in Illinois or elsewhere. In many communities, it caused a great resignation of early intervention therapists, scores of whom lost pay when the pandemic temporarily shut services. That exodus, combined with a backlog of children in need of therapy once Covid restrictions ended, left an estimated 75 percent of states with wait lists for the critical early therapies, according to information compiled at a meeting last year of state early intervention coordinators.

Related: Stark inequalities start early—with babies, toddlers, report says

From the earliest days of infancy through toddlerhood — when most children begin to talk, walk and eat solid foods — the racial disparities in access to early intervention can be pronounced. There is no simple or single answer as to why. In some instances, medical or educational staff might be racially biased or culturally ignorant. In other cases, families may be hesitant to accept help from strangers, or to admit their child has a disability. Moreover, Black and Latino families are, on average, more likely to be low-income than white families, and caregivers working long hours at low-wage jobs often have little time and flexibility to navigate a daunting bureaucracy to connect with often-elusive support.

All of these issues were at play for Santos Torres, who knew nothing of early intervention when she asked her daughter’s pediatrician years ago about the speech delay. Santos Torres said she came from a family that was skeptical and suspicious of the very idea of disability. “There is a stigma around it that can be huge,” she said. “The mentality was, ‘She is going to outgrow that. It’s nothing. It’s fine.’ It took years for my own family to accept her disability.”

About a year later, the girl finally got referred for an evaluation when it became clear that she was not “outgrowing” her challenges. When she started home-based therapies at the age of 5, it upended her mother’s life. Santos Torres had to quit her job at a warehouse to coordinate the services and be home for her daughter’s therapy. The loss in income caused the family to move into public housing. “There was no other choice,” Santos Torres said. Having missed early intervention, “it was this race against time.”

Numerous studies have shown that distrust of doctors, educators and therapists, most of whom are white, is a huge barrier many Black families in particular face in accessing early intervention.

“There’s a fear of trusting an overwhelmingly white and monolingual workforce alongside the issue that families of color view disabilities and delays very differently,” said Evandra Catherine, an assistant professor in the early childhood program at Arizona State University.

One study  encompassing predominantly Black and low-income families, found that many parents believe that developmental delays will go away on their own and often prefer to help their children on their own. The study also found that staff at early intervention agencies reported that some parents confused early intervention services with child protective services, perceiving the outreach as not only an intrusion, but a real threat.

Micaiah Young, who lives in a Milwaukee suburb, said he had to push past his mistrust of the white school administrator at a Montessori program who told him a few years ago that his preschool-age son had a speech delay. Staff at the child’s predominantly white school had made negative comments about his son several times. He recalls one conference where a teacher had only negative things to say about the child, then just 3. “I knew I was dealing with racism against my son,” Young said. “But for some reason when she made the comment about speech delays, it struck me: This is probably true.”

It took a leap of faith for the father to act on the advice of the administrator — one that he’s glad he took, since his son benefited greatly from the early, individualized help. But Young understands many Black families’ reluctance to engage in early intervention and special education. He worries that without more diverse and culturally sensitive staff and communication, “a lot of Black children will continue to slip through the cracks.”

Related: Preschool for children with disabilities works, but federal funding for it is plummeting

Other parents face the opposite hurdle: They desperately want help for their young children with disabilities and face dismissive or biased treatment when they try to get it.

Catherine said white physicians may be less concerned when Black children aren’t meeting developmental milestones because of broader “stereotypes and biases that Black people are less intelligent.” She compared such dismissals to “physicians not believing Black people when they are in pain.”

“It’s not just early intervention but referrals for preventative services or pain management. There’s a lot of implicit bias.”

“Despite greater awareness, we are in one of the most acute crises ever seen for early intervention,”

Karen Berman, senior director of Illinois policy for Start Early

Naiommy Baret, a mother in Providence, Rhode Island, said she’s at times felt dismissed and undervalued when dealing with doctors over the past few years as she was trying to get her son diagnosed and treated for both a speech delay and epilepsy. “One of the things that I really advocate for is to elevate parent voices and take their recommendations into practice as well,” she said. “At times, doctors are providing information that can be very triggering for families. And they need to mix cultural humility with an understanding of how hard of a process it may have been for families.”

North Carolina mother Sanaa Sharrieff said she encountered a form of implicit bias when she tried a few years ago to get early intervention services for her young son, who she suspected had autism.

Some teachers and others who worked with him “assumed he had behavioral issues,” and were reluctant to test him for autism, said the mother. She had to push over years for a full psychological evaluation. When that finally happened, Sharrieff’s son was already 7 years old. The evaluation confirmed that he had autism, but it came too late for him to receive occupational, physical, speech and other therapies at a time when they could, perhaps, have been most beneficial. 

“It is my firm belief,” Sharrieff said, “that my socioeconomic status, my race and my insurance status were glaring barriers to getting those services for my son.”

When it comes to early intervention, the hurdles don’t end with basic access. Oregon Health & Science University’s Zuckerman said focusing solely on racial disparities in participation masks an even bigger problem in some communities: The unequal experience that many families of color have once they enter the program. One study she co-wrote, for instance, found that young Latino children from Spanish-speaking homes were just as likely as English speakers to be diagnosed with speech delays, if not more so. But the diagnoses were less specific—instead of pinpointing a particular articulation challenge the Latino children tended to get the general “language delay” designation—and therefore less helpful in connecting families with the most beneficial therapies. “Early intervention staff are not well equipped to evaluate children from diverse backgrounds,” she said.  

Latino and Black families also frequently struggle more to find therapists. Tatyana Pacheco, a Brooklyn mother, had no problem getting approved for early intervention services nearly a year ago. Her then 1-year-old son wasn’t hitting developmental milestones: following a one-step command or playing appropriately with toys.

But it took months, she said, to find a therapist willing to come in person to her apartment. Few were available for in-person therapy in the family’s predominantly Black neighborhood in Brooklyn, Pacheco said, while whiter, wealthier neighborhoods had much longer lists of therapists. Indeed, low-income Black and Latino children in New York City are much less likely to get timely early intervention services — or at all, according to a 2019 report from Advocates for Children of New York. Pacheco suspects that some therapists don’t want to come to her neighborhood because of inaccurate beliefs about high crime rates. “A lot of us parents like it to be in person, but a lot of these therapists don’t want to come out to the neighborhoods,” she said. 

Eventually, the family found a therapist willing to come in person to help the now 2-year-old, coaching him on motor and cognitive skills. But after months of looking, they had not as of early January found a second therapist who can help the child with speech delays. Feeling desperate, late last year Pacheco agreed to try a virtual speech session with the toddler. Her son struggled to focus on YouTube videos of “someone reading a book,” his mother said. The therapist is a “nice lady,” Pacheco said, but a boilerplate lesson over the computer did not engage the 2-year-old.

“It was not working at all,” his mother said.

It’s not uncommon for parents who have felt ill-served — or neglected entirely — by early intervention to become leaders in the push to expand access. For Santos Torres, it was a gradual evolution. After she quit her job and moved into public housing, she grew more confident and knowledgeable about navigating Providence’s special education system.

Ultimately, she realized she wanted to devote her career to supporting parents with similar challenges — or even greater challenges since she, unlike many of her peers, speaks fluent English. Santos Torres returned to school to study social work, and for nearly a decade has worked as a parent advocate. Five years ago, she co-founded Parents Leading for Educational Equity, which in 2021 focused part of its efforts on strengthening the state’s early intervention system.

“My experience with my daughter was 15 years ago,” she said, “and, still, today I hear of some of the same things happening.”

For over a year, Santos Torres has convened working groups of parents — most, like her, women from working-class backgrounds who had children with disabilities — to devise recommendations for strengthening early intervention in Rhode Island. Among their priorities: increasing diversity among early intervention providers, offering therapies during nontraditional hours, and creating a multilingual state help line for families who need help with any part of the process.

The goal is to create an early intervention system that’s designed and shaped more directly by the families it serves, said Santos Torres. “We’re asking providers and decision makers to share power with families,” she said.

Related: Home visiting is proven to help moms and babies. So why aren’t we investing in it more?

Last June, the group’s efforts helped spur state lawmakers to increase funding substantially for providers of early intervention services — boosting reimbursement rates by 45 percent, the first increase of any kind in 20 years. In Rhode Island, reimbursement is done largely through Medicaid, which serves people with low incomes or disabilities.

 Parents Leading for Educational Equity has also convened parents, state agency leaders and superintendents to brainstorm priorities for better serving young children with disabilities. And they are working to get more data on the number and demographics of families on the state’s waiting list for early intervention services. 

In Denver, several families helped create a new communication tool aimed at improving the way doctors and other providers talk with caregivers about developmental delays, said Dawn Magnusson, a physical therapist who spearheaded the effort. Magnusson is an assistant professor at the University of Colorado’s School of Medicine who has done extensive research on racial disparities in early intervention.

“It’s meant to facilitate a conversation when there’s a concern about a child’s development, particularly when there’s a disconnect or discordance between provider and caregiver,” said Magnusson.

The communication guide, which is being piloted in four pediatric clinics in the Denver area, aims to “slow down” the conversation so that both doctors and caregivers have a better understanding of where the other person is coming from. It includes sample prompts and questions doctors and other providers can turn to, like: It sounds like [child’s name] enjoys __ and struggles a bit with __. What do you see as next steps in supporting your child’s development? Or, Tell me about any services or programs that you’re participating in to help support your child’s development. What’s already happening to support your child’s development?

The guide encourages providers to be curious but not intrusive in determining why a family might be wary of early intervention. It could be that a mother prefers to rely on family advice and support, for instance. Or it could be that an undocumented immigrant worries about a stranger visiting her home. These two concerns would need to be discussed — and potentially addressed — very differently.

“Trust and understanding isn’t inherent in these relationships,” said Magnusson, “and we need to build that and develop it with families.”

In some communities, equitable access to early intervention services has emerged as a civil rights priority for Black leaders. In Illinois, for instance, Start Early spoke more than two years ago at Illinois Legislative Black Caucus hearings about various challenges young children and their families face in the state. The lawmakers jumped on expanding access to early intervention as a priority for early childhood, citing the higher numbers of Black and Latino infants and toddlers languishing on wait lists for services in the state. “It’s immensely helpful when you have legislators calling for action,” said Berman.

In 2021, the Black Caucus pushed through a series of changes to expand access to early intervention, including the creation of demonstration projects at two neonatal intensive care units in hospitals, intended to model how to more quickly connect families to services.

Despite the progress in Illinois, Rhode Island and other states, waiting lists for services remain long in most states. Experts say the system had been underfunded for so long, with therapists frequently earning only a fraction of the hourly rate they could make in the private sector, that it could take many years for reforms to make a deep impact. “Despite greater awareness, we are in one of the most acute crises ever seen for early intervention,” said Berman.

Santos Torres plans to keep agitating until there’s little risk of another family enduring what she did. Her daughter is now nearly 18 and attending a small private high school in Rhode Island focused on children with special needs. The teen has made considerable progress, but it still takes her extra time to do things like tying her shoes. She also still struggles to pronounce certain words correctly. Santos Torres knows that it will be a challenge for her daughter to get a college diploma. “She is not yet prepared for college,” the mother said.

Santos Torres is sure that her daughter’s needs would not be so severe if she had been helped sooner. “I have to believe as far as speech and some of the motor skills struggles, it would have been different if she had received services earlier,” the mother said. “Could early intervention have solved all of these issues she still deals with? I don’t know. It’s a question no family should have to ask.”

Carr’s reporting for this story was supported by the Dart Center on Trauma and Journalism’s Early Childhood Global Reporting Fellowship.

This story about early intervention was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for the Hechinger newsletter.