IQ tests created by French psychologist Alfred Binet in the early 20th century paved the way for widespread intelligence testing in American schools  — including of the youngest learners.

But Binet also had early doubts as to whether intelligence could be measured at all and he was adamant that his tests, adapted into the Stanford-Binet intelligence scales in the U.S., could not be used to determine how much progress an individual student was capable of making in the long term.

“I have often observed, to my regret, that a widespread prejudice exists with regard to the educability of intelligence,” Binet wrote in 1909. “The familiar proverb, ‘When one is stupid, it is for a long time’ seems to be accepted indiscriminately by teachers … [They] lose interest in students with low intelligence.”

I learned about Binet, and his ideas about how IQ tests should — and should not — be used in elementary schools while reporting a piece last month for The Hechinger Report and Slate on the debate over cognitive testing in school placement and psychology. In recent decades, more states and school districts have shifted in the direction of downplaying the role of intelligence testing in special education evaluations. Yet change isn’t happening fast enough for some educators and experts, who argue the tests should be used less frequently and more thoughtfully.

Binet’s interest in early childhood stemmed from watching his two young daughters develop and from observing firsthand the very different cognitive strengths and processes they brought to learning. He made his first attempt at crafting a formal assessment in 1905, when asked by French officials to devise a way to identify which students had intellectual disabilities and could benefit most from specialized support.

French officials asked for his help because they saw a need for something distinct from a medical doctor or a classroom teacher to help in diagnosing and supporting children with disabilities. In that sense, Binet was an early forerunner in the field of school psychology.

Many experts believe he was prescient on three main tensions and challenges that persist in the field today:

Binet wanted to avoid testing the quality of a child’s school and their exposure to books and learning at home.

“None of the tests in the original 1905 version assumed that the child could read or write,” wrote Derek Briggs in his 2021 book, “Historical and Conceptual Foundations of Measurement in the Human Sciences,” which has a chapter focused on Binet. His tests “were intended to be insensitive to information or skills that a child would have acquired through instruction.”

This effort to separate out innate intelligence from school-acquired knowledge remains a holy grail of contemporary intelligence testing, with test creators including Jack Naglieri, trying to assess “thinking” rather than “knowledge.”

Binet held the conviction that intelligence was changeable with access to high quality schooling.

While he was aware that some children could be more easily helped than others, Binet likely would have opposed some contemporary policies or practices that steer kids away from academic instruction based on their IQ score, or indirectly withhold learning disability diagnoses — and the academic support that should come with it — to children with lower cognitive scores.

“The aim of his scale was to identify in order to help and improve, not to label in order to limit. Some children might be innately incapable of normal achievement, but all could improve with help,” wrote biologist Stephen Jay Gould in the 1981 book, “The Mismeasure of Man.”

Ranking children within a group was not Binet’s goal.

Binet was more interested in what cognitive tests showed about an individual child’s strengths, weaknesses and idiosyncrasies. As such, biographers say he likely would have opposed gifted programs that cull students from the top percentiles of intelligence test scorers. “He would have greatly objected to using IQ tests to classify — first, second, third, fourth,” Briggs, based at the University of Colorado-Boulder’s College of Education, told me. “Binet was interested in the immediacy of what to do next for an individual student, particularly for those with some sort of need of support.”

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

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Even before her son started kindergarten, Ashley Meier Barlow realized that she might have to fight for his education. Her son has Down Syndrome; when he was in prekindergarten, school officials in Fort Thomas, Kentucky, told Barlow that he wouldn’t be going to the neighborhood school, with some special education accommodations, as she had assumed.

Instead, the educators told Barlow that they wanted her son to attend a classroom across town meant for children who are profoundly impacted by their disabilities. Barlow immediately resisted, because she knew the curriculum would likely focus on life skills, and her son might never be taught much reading beyond learning the shape of common, functional words like stop and exit. “I think about it 10 years later and it still makes me want to cry,” said Barlow. “They had no confidence that they would be able to teach him.”

Driving the recommendation, Barlow knew, was her son’s low cognitive scores. “If [schools] have an IQ that suggests a child’s cognitive ability is significantly less than average, they will rely on it every time,” said Barlow, who now handles special education cases in her work as an attorney. To get her son even modified access to the regular kindergarten curriculum, Barlow would need to show that his potential to learn exceeded his test scores.

For generations, intelligence tests have played an outsize role in America, helping at times to control who can join the military and at what rank; who can enroll in the nation’s most elite private schools, and even who can be executed under federal law. They have also played a large role in America’s public schools, helping to determine from the earliest grades who can access extra help and accelerated learning and who can reap the benefits of high expectations.

After the passage of the Education for All Handicapped Children Act of 1975, schools suddenly found themselves required to label and serve children with a variety of special needs — including learning disabilities and what was then called mental retardation — without enough tools beyond testing to guide them. 

IQ tests’ centrality in many schools is now slowly starting to ebb after decades of research showing their potential for racial and class bias, among other issues. IQ scores can also change significantly over time and have proven particularly unreliable for young children. As a result, more states and school districts have adopted policies and practices that downplay the role of intelligence testing in special education evaluations.

Yet the change isn’t happening fast enough for many parents and researchers who say the tests remain deeply ingrained in the work of school psychologists, in particular, and that they are still regularly misused to gauge young children’s potential and assess whether they are “worthy” of extra help or investment.

“Cognitive testing is kind of the bread and butter of [school] psychologists,” says Tiffany Hogan, a professor and director of the Speech & Language Literacy Lab at the MGH Institute of Health Professions in Boston. “Casting doubts on the use of it is casting doubts on the entire field.”

Related: How a disgraced method of diagnosing learning disabilities persists in our nation’s schools

About a year ago, my daughter, then 5, took an intelligence test as part of a standard education evaluation process. When I looked at the subtest results, a lot of it seemed predictable. My daughter performed especially well in the parts of the verbal section that measure general knowledge (a 5-year-old might be asked the opposite direction from north, for instance). That made sense because we talk constantly about the world around us. Her scores were lower in the portions of the test focused on visual and spatial patterning. That, too, tracked in a family that hates puzzles. 

My (fortunately) low-stakes experience speaks to the long-standing criticism that intelligence tests measure a child’s exposure and early education opportunities, especially for white, middle- and upper-class language and experiences, rather than “innate” intelligence. When the tests became common in public schools in the 1970s and 80s, the goal was they would assess children’s potential, while achievement tests would show how much progress they had made learning grade-level skills. This distinction was codified through a method of evaluating for learning disabilities called the “discrepancy model,” included in 1977 federal guidelines. This model, which I reported on in an article last year for The Hechinger Report and Scientific American, requires a significant “discrepancy” between a child’s IQ and achievement to establish a learning disability, making it hard for children with lower IQs to qualify.

“(School psychologists) had very few tools in the beginning,” said Mary Zortman Cohen, who retired last June after working 34 years as a school psychologist in Boston, “so cognitive testing took on an outsize role in special education.”

At the same time, intelligence tests faced some legal challenges. In the late 1960s, San Francisco school educators labeled a young African American boy named Darryl Lester mentally retarded (what we now call intellectually disabled) after an IQ test. Without fully informing his mother, the school district pulled him out of the regular education program and assigned him to classes focused on life skills. Years later, he recounted in a story published by KQED, San Francisco’s public radio station, that his school days were dominated by recess and field trips.

In the early 1970s, Lester, known in court documents as Larry P., became the lead plaintiff in a California lawsuit alleging that IQ tests discriminated against Black students and were too often used to label them “educable mentally retarded” and remove them from traditional classes. In Lester’s case, he struggled to learn to read but never got appropriate help. 

Lester and the other plaintiffs won their case. In the late 1970s, a judge ruled that IQ tests could not be used to determine special education eligibility for Black students. Despite the victory, Lester was never taught to read, according to the KQED update.

The California case had a big impact on the state with the largest public school enrollment but was an anomaly nationally. Even as California enacted the ban, IQ tests became central across the country to the relatively young and rapidly expanding field of school psychology. To this day, some schools, like Lester’s, withhold access to sufficient academic instruction for many children with low IQs, said Kentucky parent and lawyer Barlow. “It even happens in preschool, this withholding of academic supports.”

In many places, IQ scores have historically been embedded into the definitions of two disability types: intellectual disability (where an IQ score below the low 70s often plays a large role in qualifying a child for the designation) and specific learning disability, such as dyslexia or dyscalculia (where until the early aughts the federal government told states to use the IQ discrepancy model for diagnosis).

Yet cognitive testing is not limited to learning and intellectual disabilities, it is often part of the process for determining a wide range of disabilities, sometimes needlessly so. Children suspected of attention deficit hyperactivity disorder, autism, and emotional and behavioral issues frequently get these tests, and the tests are a standard part of the protocol in many districts whenever a family or school outsider requests a special education evaluation for any reason. “I think what it boils down to is needing something to disqualify kids from services, and this pervasive view that it represents a child’s potential,” said Hogan, the Boston speech and literacy professor. She believes that cognitive testing can provide useful context on a child’s strengths and weaknesses but should never be relied on too heavily to diagnose, or fail to diagnose, a student.

Related: Almost all students with disabilities are capable of graduating on time. Here’s why they’re not

In his 1981 book, “The Mismeasure of Man,” biologist Stephen Jay Gould famously assailed the validity and influence of IQ testing, bringing news of this developing critique to a broader audience. Contrary to the beliefs of some of the original creators and backers of IQ tests, Gould disagreed with the idea that the tests could be used to rank or assign value to people. And he pointed out the structural racism and subjectivity embedded in both the tests and how they were being used to perpetuate societal power structures. His book coincided with other research showing that IQ tests can be biased against Black or low-income students, as well as many others, because they contain language and content that is more familiar to white middle- and upper-income students. 

In the years after “The Mismeasure of Man,” a growing number of education researchers and scientists also began to question the validity and importance of IQ tests in diagnosing learning disabilities. The critiques prompted the federal government to change course in 2004, as part of reauthorizing the Individuals with Disabilities Education Act, strongly recommending that states consider alternatives to looking at the gap between intelligence and achievement scores when determining if a child has a learning disability.

So why does intelligence testing remain so pervasive?

“There’s a science-to-practice lag that can take many years,” said Zortman Cohen, the retired school psychologist. “It takes a long time to infiltrate large, bureaucratic school systems.”

School psychologists say procedures are changing, albeit slowly and inconsistently. Change has been possible in part because of the spread of an evaluation method, known as “response to intervention,” that looks at how children respond to different teaching strategies before making a call as to whether they have a disability.

School psychologist Regina Boland said that in her first job in Nebraska she was forced to rely on the IQ discrepancy model to determine if a child had a learning disability (that district now uses a different approach). “There’s general agreement that it is the least valid method,” she said. “There are some kids who don’t get services under that model who definitely deserve and need support.”

Since moving to Illinois, a state that uses response to intervention as its main method, Boland has a lot more latitude in when to use cognitive tests in the process of determining whether a child has a disability and what help they need.

Under response to intervention, “a lot more is in the control of the school psychologist,” she said. “It’s not perfect, but it’s far better than what we’ve done in the past.”

While Boland believes that “the usefulness of IQ tests is overrated by some teachers,” she wouldn’t want to see them disappear entirely; she uses some form of cognitive testing in about 60 to 70 percent of her initial evaluations.

“I find it useful when kids who are lower functioning and may have intellectual disabilities come across as defiant and disrespectful, when really it’s a matter of them not understanding the information,” she said. “An IQ test can look beyond assumptions and capture abilities that are not assessed in the classroom.”

Related: What research tells us about gifted education

Not every intelligence test is created equal. Recent decades have seen a growth in cognitive tests with the goal of minimizing some of the race and class bias that plagued their predecessors.

Boland said she’s selective about which cognitive tests she uses. She avoids the Wechsler Intelligence Scale for Children (WISC), a commonly used test. She finds it loaded with language that’s more familiar to middle-class white children and an overall bias “against cultural and linguistic minorities.” Research studies have critiqued the test in the past for including questions such as: “Who was Charles Darwin?” and “What is the capital of Greece?”

“I might use the Weschler if it’s a middle-class white kid,” she said. Fortunately, Boland added, there are more options than ever for cognitive tests that are “less language loaded.”

Jack Naglieri, an emeritus professor at George Mason University and a creator of some of those alternative tests, including the Cognitive Assessment System, said he noticed decades ago how blurry the distinction was between achievement tests and intelligence tests. Both, he said, test a child’s accrued knowledge, not innate capacity.

His tests try to measure “thinking rather than knowledge,” as he puts it.

As an example, his tests would attempt to assess a child’s ability to see patterns in a series of visual shapes (see diagram) while a traditional IQ test might require a child to show vocabulary and numeracy knowledge to answer a comparable question. “The field is mired in the past in 100-year-old technology that people think is good because it’s been used for so long,” he said, “not because it really works.”

Educators and school psychologists need to rely less on intelligence tests, use them more wisely in some instances, and ensure that they are choosing the least biased tests. But they cannot bear this responsibility alone. States and school districts play an enormous role in setting the parameters under which school psychologists must operate. Some district and state officials have denied children access to special education services by setting limits on how many children qualify — with cognitive testing at times playing a problematic role as gatekeeper. Boland, the school psychologist, for example, had more freedom to exercise her professional judgment when she moved to a state that didn’t mandate a heavy reliance on intelligence testing in diagnosing certain disabilities.

Training programs for school psychologists also must change, at least those that still include outdated materials or simplistic guidance on cognitive testing. “Strict cognitive testing is a poor way of addressing the pieces of the puzzle for any one kid,” said Zortman Cohen. “It takes a lot of good training to understand how to do this well.”

In addition to systemic and policy changes, we also need a shift in mindset. Embedded in too many schools’ practice and policy, to this day, is the idea that an intelligence test score can somehow measure human potential. It does not. At their best, these tests provide a snapshot in time of a child’s cognitive strengths and weaknesses. But it is fundamentally unjust to deploy them in ways that conflate a score with a capacity for learning, and exclude children from full participation in that learning process by denying them access to an academic curriculum, or extra help learning to read. To continue to do so implicitly upholds the wild, ill-informed dreams of IQ exams’ 19th and early 20th century creators, many of them eugenicists who believed civilization would advance only upon social and educational exclusion and segregation determined by untested tests.

For nine months, Kentucky parent Barlow despaired that her son might fall victim to this kind of exclusion. She considered filing a legal complaint against the district, attended meeting after meeting, and reached out to national and local parent advocates alike — all to no avail. Then, a friend of hers was appointed principal of the neighborhood school — shortly before her son was scheduled to start kindergarten. The district relented, agreeing to let him attend the school.

Today he’s in seventh grade and receives regular instruction with his peers in math, English, science and social studies, with modifications. Barlow said he has made tremendous gains in areas including health, math, and reading. His learning enriches his life on a daily basis. It would not have been possible without exposure to a mainstream curriculum and peers, Barlow said.

“To see the bright lights go off when he is able to read the title of a TV show or the name of a song or the food he wants to eat on a menu — it’s like the angels are singing,” she said. “He can access the world because he can read.”

This story about intelligence testing in schools was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education.

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Last week the Massachusetts Senate unanimously passed a child care bill that would significantly expand state investment in child care. 

Less publicized: The bill also includes provisions that could make it harder for private equity-owned child care providers to expand significantly in the state.

Specifically, the bill takes steps to ensure that any given for-profit provider operating more than 10 programs in the state consumes no more than 1 percent of the $475 millions in grants being proposed.

Investor-backed chains now manage an estimated one in 10 child care centers in the country. That figure is likely to grow, according to several child care researchers, as states — and potentially the federal government — put new funding into the area, attracting investors interested in low start-up costs and access to public money.

As a result, advocates and experts are pushing for more extensive and widespread regulations of the kind that are moving forward in Massachusetts. “We need to make sure there are real guardrails,” said Melissa Boteach, the vice president overseeing child care and early learning at the National Women’s Law Center. Along with colleagues, she plans this June to release a report outlining recommended regulations and safeguards.

In making the push, Boteach and others cite private equity’s troubling record in managing other government-backed social services, including nursing homes and autism services. “Private equity’s track record in other sectors supported by public dollars – including home care, hospice care, and housing – foreshadows challenges the child care sector could face,” Boteach wrote in an email. In child care, profit-driven companies will take “money out rather than using that public funding to pay child care providers and teachers a living wage, upgrading facilities, [and] expanding into under-served communities,” she said.

In a written statement, Mark Bierley, CEO of the Learning Care Group, one of the largest for-profit child care operators in the U.S., offered a very different take, calling it “our duty to prepare children socially, emotionally and developmentally for their transition into K-12 education.”

“We have the resources to upgrade facilities, equipment and technology to ensure we fulfill that commitment,” he added.

The proposed regulations in Massachusetts follow a couple other related state efforts. Vermont recently put ownership disclosure requirements into its package expanding funding for child care, and also capped tuition hikes by providers. New Jersey limits for-profit programs that participate in its public pre-K system to a 2.5 percent profit margin.

But Elliot Haspel, a senior fellow at the think tank Capita, who has been tracking private equity expansion in child care closely, described the proposed Massachusetts measures as “the most targeted guardrails we’ve seen to date” against investor-backed companies consuming the lion’s share of new public investment. 

Haspel points out that there’s been similar momentum internationally, with British Columbia specifying that priority for public funding goes to public and nonprofit programs, and Australia requiring larger providers that manage more than 25 sites to submit more extensive financial reports.

The U.S. has historically spent very little on child care compared to other wealthy nations. Partly as a result, investor-backed, for-profit chains in the U.S. operate predominantly in middle-income and wealthier neighborhoods and communities, where they can often charge substantial tuition. That could change if more public funds flow into child care, leading to significantly increased government subsidies for lower-income children.   

Last year, President Biden’s administration pushed for greater transparency and accountability in nursing home ownership after research showed that private-equity owned facilities on average had worse outcomes, including more patient deaths. But there’s not much information that compares the quality of for-profit and nonprofit child care programs, which could hinder efforts to put restrictions and regulations on the companies.

Haspel said “the first step for the federal government is trying to get a lot more information” in a landscape where the quality can vary dramatically within all ownership types — investor backed or not. That said, he added that there’s no reason not to take such steps as ensuring a certain percentage of public funding is used to pay educators and requiring centers to disclose financial and ownership information.

“Some of the potential guardrails are common-sense,” he said.

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

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A wave of new laws across the country is attempting to transform how elementary school children learn to read. Most states have in recent years passed legislation aimed at aligning policies and practices with the “science of reading,” a term that has become associated with more phonics instruction but, if done well, also includes reading fluency, vocabulary building, comprehension and other skills.

What makes a current reading reform effort in New York state more unusual is its emphasis on strengthening the foundational skills of young children well before they reach kindergarten.

“Anything I’ve heard about the science of reading always seems to start with kindergarten, when the kid hits school,” said Jenn O’Connor, director of partnerships and early childhood policy at The Education Trust-New York. The organization is leading the effort to integrate the push for the science of reading with stronger preliteracy instruction for children ages birth to five.

But she added, “I wouldn’t want anyone to think we’re putting two-year-olds in classrooms at desks and drilling them on phonics.”

What the organization is asking for is that prekindergarten be included in a set of comprehensive reading reforms under consideration by the state legislature. The proposal calls for schools to use “scientifically proven” reading curricula by 2025, and to invest millions in retraining teachers.

Later this year, Education Trust-New York also plans to release resources and ideas related to the earliest years. “It’s crucial to think about what children are getting even before they enter pre-K,” O’Connor said.

The effort in New York is an anomaly for even attempting to incorporate children younger than 5 in a meaningful way, said Susan B. Neuman, a professor of childhood education and literacy development at the Steinhardt School at New York University.

“For the most part, early childhood education and literacy reform are seen as very separate entities, and it’s very discouraging to me, frankly,” Neuman said.

Neuman believes that the heavy emphasis on phonics and decoding in the current reform efforts excludes not only children younger than 5 but many kindergarteners as well. In prekindergarten and at the start of kindergarten, the emphasis should be on encouraging kids to talk and develop their oral language skills, engaging teachers in responsive talking and listening to children and helping kids recognize letters and begin to understand the relationships between letters and sounds.

“These years are a wonderful space where we could be doing so much in terms of instruction,” she said. Even though some states have described their reading reform efforts as encompassing pre-kindergarten through third grade, Neuman said none of the plans she has read spell out how the style and mode of instruction and teacher training should be different in pre-kindergarten and much of the kindergarten year. “I fear that some of them will actually say, ‘Let’s do phonics in pre-K,’” Neuman said.

Partly for this reason, the effort in New York includes some partners that have long modeled what effective literacy development can look like in children as young as infancy.

One of Education Trust’s nearly 80 partners, ParentChild+, works primarily in the homes of children ages 16 months to 4 years old, moving through a curriculum aimed at supporting caregivers to get the most out of reading with their child, and interacting with them in all kinds of settings. “We believe parents are the first and primary teachers of a child,” said Andre Eaton, ParentChild+’s New York director.

Early learning specialists, many of them parents who participated in the program themselves, visit homes twice a week for 46 weeks, modeling and guiding caregivers in terms of how they might teach their children about colors and numbers through books, for instance. In more recent years, ParentChild+ has adapted an abbreviated version of its curriculum for home-based child care providers.

“While I believe in the scientific methodology of phonics,” Eaton said, “we know the development of early literacy skills and the love of learning is really important early on.”

The bill in New York contains only one line specific to pre-K, noting that students at that age will be assessed based on their cognitive abilities and social-emotional learning. But for O’Connor, who pushed to add the line in a later draft of the bill, it’s a crucial step in the right direction to have anything in a piece of potential reading reform-related legislation specific to pre-K.

It’s a start at getting reading reform advocates thinking — and talking more about the youngest learners. And “whether the bill passes or not, [we] are committed to helping school districts and child care programs access resources,” she said.

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

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The pandemic underscored the stark differences in pay, working conditions, and respect between K-12 educators and child care teachers in many communities. The disparity is rooted in race, class and gender: Child care teachers are more likely to be female, less likely to be white, and more likely to come from lower-income backgrounds than public school teachers.

In spite of historically poor treatment and low pay, child care workers have been exceptionally hard to unionize, due to high turnover rates, the geographic spread and isolation of the workforce, labor laws, and other factors.

Yet there have been union victories in recent years. In California, Child Care Providers United, which represents more than 40,000 home-based providers, won the right to collective bargaining in 2019, and last year secured a second substantial reimbursement increase from the state for many home child care providers. In New Mexico, where it’s harder for employees to unionize, organizers have taken a different tack: Through the leadership of an organization called OLÉ, parents and child care teachers joined forces to organize a public awareness campaign which contributed to voters approving a constitutional amendment guaranteeing a right to free child care for most of the state’s families.

I spoke earlier this month with Alexa Frankenberg, executive director of California’s Child Care Providers United, and Brenda Parra, senior digital strategist for OLÉ about how to effectively organize child care workers and the importance of diverse strategies for doing so. The interviews have been edited for clarity and length.

Can you tell me about your personal background and how you became involved in the field?

PARRA: It’s been maybe six or seven years. I used to be a child care worker. I was in a classroom with 3-year-olds and I had to leave my position, unfortunately. I really loved doing the work, but the pay was very low and it was not supporting my family anymore. Somebody told me about OLÉ, which was doing child care organizing at the time. So I started joining these meetings. And I stuck around for a while until I decided to become an organizer. 

What have you learned about what makes organizing effective in the child care space?

FRANKENBERG: One of the things that makes it uniquely challenging is just how dispersed the family child care providers are. They obviously work in their own homes so there are tens of thousands of work sites around the state for the members that are represented by CCPU (Child Care Providers United). That means you need to figure out how to have conversations with people spread over [many] work sites about how organizing together to build power through a union can make a difference in their lives.

Another challenge relates to the low pay. Many child care providers and staff have to hold multiple jobs to be able to make ends meet and support their families. So it’s a challenge for them to find the time to have the conversations, do the organizing work, and work together to make change. That takes time.

Thinking about the success that you’ve had in California, what were some specific strategies that you used there to try to overcome some of these challenges?

PARRA: There’s work you can do in terms of systematically identifying and recruiting leaders, equipping them to do the work. You’re never going to be able to have the resources to staff a campaign to go to 50,000 work sites to talk to folks. That requires you to think early on about individuals leading and owning this work, including talking to their coworkers. 

When OLÉ first started its work, what was its strategy?

PARRA: From what I am aware, OLÉ started door knocking and organizers used to go to centers and, once there, they would talk to the director and ask if they could talk to their teachers and their parents.

How did strategies evolve over time?

PARRA: The digital work ramped up during COVID. 

It was super hard to be able to find child care because of the circumstances of COVID and everyone getting sick. There were a lot of centers closing down. We were running ads on social media. We were able to get further out there and get people more informed. When we started doing online organizing, we would get maybe a week’s worth of work visiting centers done in one day. 

Thinking of New Mexico, and OLÉ’s success at making inroads for child care teachers outside unionization, how important is it to think about other strategies apart from traditional organizing?

FRANKENBERG: I don’t think it has to be either-or. We have worked side by side with allies, such as parent advocates and others, here in California. And that has been part of what has allowed us to be successful, both at the state level as well as local level. We worked super closely with parent voices in Alameda County to win passage of a local measure to fund additional child care slots, higher pay and other supports that are needed. We continue to look to New Mexico for the work they’ve done to move to alternative methods. We obviously think that there’s some really critical and important guarantees that a union contract allows providers to have, but organizing and collective power take a lot of different shapes.

How have you been able to translate online organizing in New Mexico into concrete victories for child care workers?

PARRA: My work is to put up the online ad and collect the phone number and name of the person who responds. After that, I will put it into either a phone bank or a text bank so one of the organizers from the early education campaign can send them a text or get more information from them.

Do you feel the pandemic made it easier or harder to organize in the child care space?

FRANKENBERG: That’s a hard question to answer because there’s nothing about the pandemic that was easy. What these individuals went through — financially, physically, mentally, emotionally — all these things are still being felt. So it would be really hard to say it made things easy. What it did was make consequences very stark. It was very clear that there was work that was needed to ensure basic health and safety of individuals. We had to fight for Covid closure days so that people could close down and not lose money because they had Covid or someone in their child care had Covid.

The pandemic shone a spotlight on the value of child care to allow people that needed to go to work to go to work in those first few months, particularly when schools closed. Child care workers were holding up our economy for a long time. And they’ve never had a break, really.

What do you feel the future holds for child care organizing? 

FRANKENBERG: We’re in the middle of moving to cost-of-care reimbursement, which is something they’ve achieved in New Mexico. That’s a big thing on the horizon for us. There are a lot of short-term gains we’ve been able to make on pay. And it’s critical that we don’t continue to just go short-term to short-term to short-term, but really move towards a system. We’re glad to have the governor’s partnership on this. And we’re working toward ensuring people are receiving more than pennies on the dollar.

We need to make sure that the child care system that we have is one that really reflects who California is in the year 2024, not a system that was set up 50 years ago and may have some of those biases. We need to root out the racism, the sexism, that’s inherent in the system. It’s baked into the pay and compensation, but it’s also baked into really unjust policies that have negative impacts on families and providers.

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

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For parents applying to the dual-language program at Rochester, New York’s public school No. 12, where students learn in both English and Spanish, the process can be both bureaucratic and baffling. After listing the program as a top choice, parents must schedule a testing appointment at the central office, where an instructor gauges such skills as whether each incoming kindergartener can hold a book properly and turn its pages, identify that a sentence is made up of words and spaces, use words to describe the scene in a picture, identify sounds in a word, and other pre-reading skills.

Families never receive a “score” on the test, which is available in both English or Spanish, or any information about how it is used in the admissions process — just word on whether their child made it in. (The district communications office did not respond to multiple queries about the process.)

After her 5-year-old son took the test several years ago, Rochester parent Llerena Searle was convinced that the news wouldn’t be good. He had a meltdown when asked to go with an unfamiliar instructor, acquiescing only when allowed to “test” from his mother’s lap. The boy was admitted, though, and is now in seventh grade; Searle believes he received a wonderful education at school No. 12. “I just wish it were more accessible,” she said. 

In some communities across the country, dual-language programs — one of the best means of ensuring equity for underserved groups, especially English learners — have taken an elitist turn. And with the Biden administration eager to help districts expand such programs, questions about who they help — and who gets left out — are becoming more urgent. 

In too many places, admissions processes send a message that dual-language learning is not for everyone (when research shows that actually it is). In Mamaroneck, New York, for instance, the local dual-language school at one point published information asking families to consider whether their child’s native language is developing within “normal” limits when deciding whether to apply. (After this article published, school officials reached out to say that has not been their practice for some time, and the program is open to all interested families.) In Boston, the dual-language programs significantly under-enroll students with disabilities, partly out of a misconception that learning in two languages isn’t appropriate for many students with special education needs.*

Related: A Spanish-English high school proves learning in two languages can boost graduation rates

In other districts, the sin is one of omission rather than commission: failure to market the dual-language programs sufficiently to newcomer families; failure to locate the programs in communities where newcomers actually live; time-consuming admissions processes that can seem labyrinthine and opaque — even if they don’t involve testing recalcitrant preschoolers. 

Most experts recommend reserving at least half of seats in dual-language programs for English learners, who benefit most from programs partly in their native language, and dividing the remainder through random lottery after aggressive outreach to underrepresented communities, including Black families, low-income students and those with disabilities. Yet English learner enrollment shares are shrinking in most dual-language schools in large cities including New York, Los Angeles and San Francisco, according to a report released last spring by The Century Foundation and the Children’s Equity Project. 

Meanwhile, the share of white student enrollment was up in several other cities, most noticeably Washington D.C. “Many dual-language programs are at risk of tilting toward language enrichment for English-dominant children, instead of advancing linguistic equity and expanding educational opportunity for ELs,” the report’s authors wrote. Overall, the number of dual-language schools in the country has nearly quadrupled since 2010, and currently numbers more than 3,600. 

“[P]rograms that were ostensibly created to help English learners have turned into an extracurricular for native English speakers.”

Alina Adams, parent

There’s no one solution to this troubling shift — dual-language programs are gentrifying in many cities partly because the cities themselves are gentrifying. In some communities, English learner enrollments are depressed because of the lingering effects of hypocritical policies in the U.S. banning bilingual education for non-English speaking newcomers. Many immigrant families absorbed the “English only” message, and remained hesitant to try dual language even after the policies changed.

But school districts need to be far more vigilant in designing admissions processes and programs that favor the least privileged rather than the most. Otherwise, one of the most proven ways to combat the achievement gap, particularly for English learners, is at risk of playing a perversely opposite role: expanding educational opportunity for the elite.

Dual-language programs have never been monolithic in their demographics or their goals. When they began to appear in significant numbers in the U.S. in the 1980s and 1990s, some opened with the intent of serving English learners and working-class Latino families. Others hoped to enroll a significant number of white, English-speaking families, and even deter white flight from urban areas. Some wanted to meet both goals. One-way language schools enroll predominantly students from a single language group, while most two-way programs try to enroll a roughly equivalent number of students from English-speaking households and the target language.

Widespread gentrification in the 1990s and early 2000s also brought many white and well-off families back to some urban neighborhoods where dual-language schools were taking root. That coincided with a growing recognition by privileged families of the economic and career benefits of bilingualism, and a particular interest in affluent communities in studying Spanish and Mandarin. Research shows that learning multiple languages early in life has cognitive benefits extending beyond language acquisition and helps children develop stronger social skills, including empathizing better with others. In sum, bilingualism is good for both the brain and the heart.

In New York City, meanwhile, some middle-class and affluent families have come to see dual-language programs as an alternative to gifted and talented education, particularly as the latter has become harder to access, said Alina Adams, a parent and creator of the website NYCSchoolSecrets.com. Over the last decade, “gifted and talented became more competitive every year and suddenly there were many more dual-language programs,” she said. Ambitious parents perceived it as a more rigorous, challenging curriculum. And at some locations, “programs that were ostensibly created to help English learners have turned into an extracurricular for native English speakers,” Adams added.

Related: Students with disabilities often left out of popular ‘dual-language’ programs

Yet recent decades have also brought a growing research base showing that it’s precisely the students least likely to seek out gifted and talented programming who can benefit most from well-designed, supportive dual language programs. “Dual language is the one program we’ve found that truly closes the [achievement] gap” between English learners and the rest of the student population, said Virginia Collier, an emeritus professor of education at George Mason University.  Her research, done over the course of four decades in collaboration with her husband and GMU colleague Wayne Thomas, also shows that dual-language learning can be particularly effective for Black students, low-income students, and those with special needs — three groups that are often underrepresented in the programs. 

There’s a misconception among some educators and parents that bilingual education is inappropriate for students with developmental delays, or those predisposed to fall behind in an English-only curriculum. Yet a 2021 study found that dual-language “education can benefit … even students who often struggle in school because of special education needs.” And a 2018 paper found “no credible evidence that bilingual education adds or creates burden for children. Yet it is “incontrovertible,” according to the paper, that bilingual learning comes with decided advantages.

Spanish dual-language programs, the most common kind in the U.S., can be especially beneficial for students who struggle with reading. That’s because the Spanish language is more phonetic than the English one, with much less variation in the sounds that letters make. But some programs send the message — whether intentional or accidental — that dual language schools aren’t appropriate for children without strong early literacy skills.

“You might hear a parent say, ‘My kid didn’t start talking until age three and a half. They are already struggling — it would be too confusing to be in a dual language program,’” said Emily Bivins, former principal of a dual-language school in Chapel Hill, North Carolina whose company provides professional development for dual-language programs. “We all know the research is counter to that. These are the students who absolutely need to be in our bilingual programs.”

Bivins’ own three children attended dual-language programs, and she said it was most helpful for the child with an attention deficit diagnosis and early reading struggles. “Learning to read in Spanish was much better for her … the rules were clearer,” Bivins said. That’s part of the reason it’s so frustrating when she hears from colleagues at dual-language schools that use reading screeners where, if students “don’t score high enough [they] don’t get in.”  

Widespread interest in dual-language schools, including among the affluent, is a good thing, say proponents of bilingual education. But it becomes problematic if students from underserved groups are neglected or squeezed out of programs. Many communities lack sufficient bilingual educators to meet the desire for dual language. “It’s an iron law of education policymaking: nothing exacerbates educational unfairness like scarcity,” wrote the authors of the report released last spring.

The history of the Amigos School, a dual-language program in Cambridge, Massachusetts, shows that even seemingly minor changes to admissions processes can significantly shape how a school is perceived — and who applies — tilting preference toward privilege.

Thirty-five years ago, scores of first- and second-generation immigrant families from Puerto Rico and the Dominican Republic, along with others, came to see Amigos as the place to send their kids. The school was located near subsidized public housing, where many of the families lived. And the school’s founder, Mary Cazabon, engaged in constant grassroots outreach, attending community events and churches, like Cambridge’s bilingual Saint Mary’s church, where she spread word about the school and the benefits of learning in two languages. “We wanted to make sure that we were going to address the needs of the students who were most vulnerable,” Cazabon says. “The priority was on them.” To that end, Spanish-speaking students designated as English learners were given priority in admissions, Cazabon says.

Then the biotech boom hit Cambridge in the 1990s, and a growing number of white and wealthier families began to take an interest in Amigos, drawn by the allure of raising bilingual children. At some point in the 2000s, the school district also made a pivotal switch: Instead of giving priority to English learners, as Cazabon had done, they introduced a system that awarded “Spanish points” to children who could show some knowledge of Spanish when applying to the school’s pre-K or kindergarten. 

Related: Once criticized, ‘Spanglish’ finds a place in the classroom 

The change opened the door to a much broader group of families gaining admissions preference: Families with some Hispanic heritage whose toddlers were exposed to both English and Spanish in the home, but also families with no Hispanic heritage who sent their children to a Spanish-language child care or hired Spanish-speaking nannies with the goal of getting a spot at Amigos. By 2010, the demographics of Amigos had shifted dramatically, and it enrolled fewer low-income students than almost all the schools in the district. Penn Loh, a lecturer at Tufts University, said that in his son’s class at that time, only two of 44 children qualified for free and reduced lunch.

In 2011, one mother filed a complaint with the Cambridge Human Rights Commission, alleging that Amigos no longer served the Hispanic community. And Loh and other parents at Amigos petitioned the school board to change the admissions process, worried that Amigos increasingly catered too much to the children of Cambridge’s elite. “The pool of Spanish-proficient applicants became more unbalanced, with more wealthy, privileged families having children qualify in this pool,” Loh said in a recent email.. “We heard that working class Latinx families, often in Cambridge for generations, were not … getting into the school.”

The school district changed the policy to give “points” to children from lower socioeconomic backgrounds.

The number of dual-language public schools in the U.S. has quadrupled since 2010, to more than 3,600. 

“We are on our way to being much more balanced,” said Sarah Bartels-Marrero, the school’s current principal. “To me, it’s very important that we have a very diverse group of Spanish-speaking students. That’s a core pillar of our school.” The Spanish points system helps ensure that, she added, although she acknowledged that some English-only parents have also employed it as a workaround. “Certain individuals with privilege and knowledge may look for a loophole,” she said. “That is a thing, but we work really hard to combat and mitigate that.” 

Amigos continues to enroll slightly fewer English learners and about 10 percent fewer low-income students than the district average. Although the current formula would virtually guarantee a low-income Spanish speaking student admission, only one such incoming kindergartener listed Amigos as their first choice in January 2022, according to data published by the district.  However, Bartels-Marrero pointed out that about 60 percent of families identify as Hispanic or Latino, a group that is incredibly diverse. “To me it’s fundamentally important that [Amigos] is an option and opportunity for every kid in Cambridge regardless of race or background,” she said. 

Some states and communities also suffer from a location problem when it comes to dual language. The predominantly white town of Maynard, Massachusetts created a Spanish dual-language school with its English speakers in mind — not its growing population of Portuguese-speaking students, for instance. But the thousands of Spanish-speaking English learner students in the much larger and heavily Hispanic city of Lawrence, located just 35 miles to the north, have for two decades lacked access to even a single dual-language Spanish program (two are slated to open in the next year or so). States and the federal government could, and should, incentivize districts to open programs where there is the most need, and discourage programs targeted mostly at English speakers.

But starting new programs takes time, and there are steps that school districts can take right now to help ensure that English learners, low-income students, Black students, and other underrepresented groups have equal, if not greater access, to dual-language programs. They should engage more in grassroots outreach and marketing of dual learning, tailoring the message as needed to different communities. They should make the admissions process as transparent and accessible as possible, avoiding complicated or burdensome steps that advantage those with flexible schedules and knowledge of school system bureaucracy.

And they should eschew any kind of elitist framing, intentional or not. 

Llerena Searle, the Rochester mother, liked the dual-language program at School No. 12 well enough to enroll her younger child there, too. This time, there was a pandemic going on and the child was tested over Zoom. Her daughter dutifully cooperated with the process. With little doubt of a successful outcome (the school also has an admissions preference for siblings) Searle was more relaxed this time, yet hardly sanguine about the admissions process. She never figured out exactly what district officials were trying to accomplish, but in the end worried that the test mostly measured privilege. 

*Clarification: This article was updated to reflect the fact that the dual language program in Mamaroneck, New York, is now open to all interested families, including those with disabilities.

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

The post How to keep dual-language programs from being gentrified by English speaking families appeared first on The Hechinger Report.

Eighty-seven percent of states lack enough speech language pathologists to reach all the infants and toddlers in need. Eighty-two percent suffer from physical therapist shortages. And among the service coordinators who organize critical therapies for America’s youngest children, the turnover rate is a stunning 42 percent, according to information compiled by the IDEA Infant and Toddler Coordinators Association from a survey that had 45 state respondents. (The K-12 teacher turnover rate, by contrast, only reached a mere 10 percent during the pandemic.)

With all the attention recently to the teacher and child care worker shortages in communities across America, the sector facing the most severe crisis has received comparatively little notice from policy makers, the media or the general public: those providing critical early intervention therapies for children under age 3 with developmental delays.

Last March, I published a story for Hechinger and USA TODAY on longstanding racial inequities in terms of who can, and has, accessed these therapies. One Rhode Island mother, for instance, missed out on early intervention entirely for her daughter because the toddler’s speech delay was attributed to the family’s bilingualism. “We missed that window from 1 to 4, which is such a precious age,” the mother told me.

Quality early intervention is critical for millions of families — and significantly reduces the likelihood that a child will need special education services in kindergarten. Most of the challenges and inequities in the system connect back to workforce issues. Staffing shortages are most severe in predominantly low-income communities, meaning longer waitlists when services are even available at all. Meanwhile, there’s a striking lack of diversity among early intervention personnel. One recent survey found that nearly 90 percent of early childhood special education personnel are white, 97 percent are female, and only 6 percent speak Spanish, according to Mary Bruder, the director of the University of Connecticut Center for Excellence in Developmental Disabilities Education, Research, and Service.

Increased funding for early intervention — translated into increased pay for therapists and case managers — is essential yet insufficient on its own. Both Rhode Island and Illinois are among the states that have significantly upped pay rates for early intervention personnel in recent years and continue to lack critical staff. “There has been a big effort to raise wages and have sign-on bonuses but still it hasn’t been enough,” said Leanne Barrett, a senior policy analyst at Rhode Island Kids Count.

The workforce shortage “is at crisis proportions,” said Bruder.

In the last month, I interviewed a half dozen experts about potential strategies for expanding and diversifying the workforce. Here are some of the takeaways:

Expand mentoring and apprenticeships

Apprenticeships are underutilized throughout education, and could be especially helpful in the early intervention workforce, particularly for those from lower-income backgrounds who can’t afford to enter often pricey training programs without an income. “They would be getting funding while completing the credentials they need,” said Catherine Main, director of early childhood education at the University of Illinois Chicago.

Create a pipeline from related jobs

In communities facing teacher shortages, education officials have tried to increase the number of paraprofessionals and teachers’ aides certified to lead their own classrooms. The same pathway could and should exist in early special education services, with aides and others in lower-paid jobs in the field encouraged and offered financial support to get trained as therapists and service coordinators.

Offer perks to those already in the profession

Staff retention is key to meeting the needs of surging caseloads. States have talked about such incentives as repaying loan debt for early intervention professionals who make a commitment to stay in the field, and providing them with free child care (as Kentucky has done with child care workers). Barrett says there’s a need to “think creatively” and do more to make the jobs both appealing and sustainable.

Build in more culturally relevant curriculum and training

Many potential therapists, particularly people of color, don’t pursue or stay in training programs because the preparation is “very western and Eurocentric,” said Evandra Catherine, an assistant professor in the early childhood program at Arizona State University. Catherine added that both in academic and in-service training, there should be a focus on “affirming the identities of the families and communities they are servicing,” and the curriculum should feature research and literature by a more diverse array of scholars and practitioners. Among other things, there needs to be discussion of historic linkages between disability and race. “At one point in time, if you were Black you were considered disabled,” she said. To better relate to families today, providers need to understand that history, Catherine added.

Streamline higher education bureaucracy

The path to working in early intervention is not always easy or clear, with entirely different training programs and licensure requirements for a developmental therapist working with 2-year-olds vs. a special education teacher working with 3-year-olds — even though the training required is very similar, said Catherine Main. The different agencies that run early intervention and special education need to coordinate to better allow for staff crossover and sharing. That includes building more accessible pathways from community college programs into early intervention. “If our agencies came together to have a more uniform qualification system that would be really helpful,” Main said.

Support, support, support

Early intervention personnel and experts have told me of a surge in the number of toddlers trying to access the services, partly due to pandemic backlogs and delays. That’s been hard for providers, many of whom have seen their caseloads grow. “A lot are looking to leave the field because of stress due to growing caseloads,” said Bruder. We’re “seeing this dissatisfaction more than we have seen before.” Pay and benefits help but so does ongoing support, particularly in the form of mentorship and stability, for a job that even under the best of circumstances can bring unexpected challenges nearly every day.

More on early intervention

I found in my reporting that Black and Hispanic children not only receive less early intervention, but the services are lower in quality and less targeted to their specific needs. For instance, Spanish speaking children are more likely to get general speech services while English speaking ones receive help with specific articulation problems. That story is available in Spanish here.

Last month, in a similar piece, the Associated Press examined how the pandemic exacerbated early intervention staff shortages in Illinois and nationwide. 

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

The post Six ideas to ease the early intervention staffing crisis appeared first on The Hechinger Report.

It pains Tim Odegard that four decades after a misguided approach to diagnosing dyslexia kept him from getting help in school, thousands of children across the U.S. are needlessly suffering for the same reason.

During the initial weeks of first grade, Odegard’s struggles with reading went undetected as he memorized words that classmates read aloud before him. The strategy worked so well that his teacher moved him to the position of “first reader.” It then became apparent that the six-year-old not only wasn’t the strongest reader in the class—he couldn’t read at all. The teacher dispatched him to a low-skill group. “It just kind of went downhill from there,” Odegard, now 47, recalled.

Through sheer determination and reliance on his prodigious memory, Odegard eventually memorized enough words to get by and earned decent grades, although they would never come easily. “I compensated for my reading and spelling problems by staying up until 1 or 2 a.m. to get things done,” he said. He never received extra help or special education services from his Houston-area school district. Instead, a couple of teachers seemed to doubt his intelligence. When Odegard was the first student in his school to solve a complex murder mystery puzzle, one of them said he must have guessed.

It wasn’t until he was in his late 20s that Odegard came to understand why his teachers thought so poorly of his abilities. In 2004, as a new Ph.D., he told his mother that the National Institutes of Health had awarded him a postdoctoral fellowship to study dyslexia, a condition he’d long suspected he had. She shared that when he was in third grade, school officials had used a so-called discrepancy model that compared intelligence quotient (IQ) with reading performance to rule that he didn’t have a learning disability.

“I was thought to be too stupid to be dyslexic,” said Odegard, now editor in chief of the Annals of Dyslexia and chair of excellence in dyslexic studies at Middle Tennessee State University in Murfreesboro, Tennessee.

Up to around 20 percent of the U.S. population has dyslexia, a neurological condition that makes it difficult to decipher and spell written words. Someone with the disability might omit short words such as “and” and “the” while reading aloud, for example, or read “dog” as “god”—even if they speak normally in conversation. The condition impedes a person’s ability to process written information and can negatively affect their career and well-being. Yet only a fraction of affected students get a dyslexia diagnosis or the specialized assistance that can help them manage their difficulty reading.

One reason so many diagnoses are missed is that thousands of schools in the U.S. continue to use an iteration of the discrepancy model to test children for learning disabilities. Moreover, for a multitude of reasons, including biases in IQ tests, a disproportionate number of those diagnosed—and helped—have been white and middle- to upper-class.

“It’s unfair, it’s discriminatory, and it disadvantages already economically disadvantaged kids,” said Jack Fletcher, co-founder of the Texas Center for Learning Disabilities in Houston and one of the first scientists to question the discrepancy model’s validity.

The model has shaped decades of policy regarding whose literacy is considered vital and worthy of extra help and investment—and whose is not. It is rooted in long-standing misconceptions about dyslexia. Reforming how the condition is defined and diagnosed could help many more children learn to read.

Speaking comes naturally to most children, being a gift of human evolution, but reading and writing are inventions that must be consciously and painstakingly learned. No one is born with neural circuits for connecting the sounds of speech to squiggles on paper. Instead, when someone learns to read, their brain improvises, splicing and joining sections of preexisting circuits for processing vision and speech to form a new “reading circuit.” To read the (written) word “dog,” for example, a typical brain will disaggregate the word into its constituent letters, “d,” “o” and “g,” and then summon from memory the sound fragments, or phonemes, associated with each letter. It aggregates these phonemes into the sound “dog” and retrieves the meaning of the word that matches that sound. Most brains eventually learn to do all these steps so fast that the action seems automatic. Some written words become so familiar that the speech circuit eventually gets bypassed, so that there is a direct association between the word as seen on paper or on a screen and its meaning.

Because human brains are organized in diverse ways, some people’s reading circuits end up being inefficient. Dyslexia is the most common reading disability. People with the condition, which is partly linked to genetics, often have less gray matter and brain activity in the parietotemporal region of the brain’s left hemisphere, associated with connecting the sounds of speech to the shapes of printed text.

The severity and manifestations of dyslexia can vary from person to person, but children with the learning disability benefit most from early help with explications of the sound structures underlying words. For those who continue to struggle in school, the ideal instruction is one-on-one or in a small group with a trained teacher who provides intensive and systematic assistance in making connections between written words and sounds. Learning the rules—and the many, many exceptions—of the English language is particularly important, because children with dyslexia are typically unable to pick them up through mere exposure to text. The letter “a” can be pronounced five different ways in English, whereas in Spanish, for instance, vowels almost always have the same pronunciation.

With the right kind of instruction, most children with dyslexia can learn how to read. In part because of an accident of scientific history, however, this essential assistance has been far more available to kids who score higher on IQ and other cognitive tests. An early case report of dyslexia, published in the British Medical Journal in 1896, helped to define the disorder as an unexpected deficit in otherwise “bright” children. The study described a 14-year-old referred to as Percy F. “He has always been a bright and intelligent boy, quick at games, and in no way inferior to others,” wrote the doctor who examined Percy, “yet in writing from dictation he comes to grief over any but the simplest words.”

Related: While white students get specialists, struggling Black and Latino readers often get left on their own

That incipient definition characterized a lot of early thinking about dyslexia. It was inadvertently codified in school systems through influential studies led by British psychiatrists Michael Rutter and William Yule on the Isle of Wight in the 1960s and early 1970s.

 Rutter and Yule are well regarded for being among the first in the field to focus deeply on children and for their groundbreaking work in autism and post-traumatic stress disorder. When devising a definition of “reading disability” based on the population of nine- to 11-year-olds on the island, the researchers distinguished between poor readers who read at levels predicted by their IQs and those who did not, looking for evidence of dyslexia only in those in the latter group.

The studies came just as the U.S. was creating its own special education categories and definitions to prepare for the passage of the Education for All Handicapped Children Act in 1975. When it came to learning disabilities, experts relied heavily on the idea that for a learning disability to be present, reading performance had to fall short of IQ.

Guidelines put out by the U.S. government in 1977 asked that schools look for a “severe discrepancy between levels of ability and achievement” when screening children for learning disabilities. Thus, a child’s IQ scores, which rank cognitive abilities such as reasoning, began to play an outsize role in determining countless students’ educational fates. Specifically, if the IQ score wasn’t high enough and, in consequence, the gap wasn’t big enough, the child wasn’t diagnosed with a reading disability. Despite the fact that most youngsters can learn to read regardless of their IQ score, those with lower scores were often assumed to lack the “smarts” to read well.

An IQ test kept Sandra Chittenden’s daughter from getting the right help for years. The girl learned new words slowly and struggled to pronounce them correctly, mixing up similar-sounding words. In kindergarten she had no interest in letters and sounds, and she couldn’t easily see the similarities and differences across words on a page. Having a mild form of dyslexia herself and with an older son who is severely dyslexic, Chittenden, who is a special education advocate in Vermont, asked the school district to evaluate the girl for a reading disability.

The five-year-old was promptly given an IQ test. She posted an average overall score and a below-average score on a reading achievement test. But the gap between the two scores didn’t meet the cutoff of 15 points, so the girl was not given appropriate reading services in her school. The same thing happened when Chittenden requested another evaluation when her daughter was in first grade.

For the child, the results were wounding. During her first couple of years of elementary school “her nervous system was like a pressure cooker because she wasn’t being given appropriate help,” Chittenden said. “She held it together all day at school and then would explode.”

In third grade, the girl was diagnosed with a learning disability in math, and the school added a dyslexia diagnosis because of her continued struggles with both arithmetic and reading. But for years, Chittenden says, “I remember it being really frustrating knowing my child had dyslexia and not being able to get the right help.” As of this year, partly in response to parental concerns, Vermont is no longer using the discrepancy model to diagnose learning disabilities.

Researchers pointed out problems with the discrepancy model even before its use became prevalent in the U.S. Fletcher, an early critic, noted a methodological issue in the Isle of Wight studies: they did not exclude children with intellectual disabilities or brain injuries. Yet by some accounts there was an unusually large number of neurologically impaired subjects on the island at the time, resulting in a skewed sample.

It has also long been clear that IQ tests can be biased against Black or low-income students, as well as many others, because they contain language and content that is more familiar to white middle- and upper-income students. Researchers began to observe inequitable results in the late 1970s as American public schools began evaluating more children to comply with the mandates of the federal special education law, since renamed the Individuals with Disabilities Education Act.

 As a research assistant at the University of Minnesota, Mark Shinn said he saw how the discrepancy model disproportionately prevented children from low-income families, English learners and students of color from getting help. “You had all these kids in high-poverty schools with [below average] cognitive ability of 90 and 80, and the schools could throw up their hands and say, ‘They are too “slow” to benefit [from services],’” recalled Shinn, now a professor emeritus of school psychology at National Louis University in Chicago. Yet “it was well known that poor kids…earned low scores on cognitive tests largely because of a lack of opportunities and experiences.”

In the 1980s, educational psychologist Linda Siegel, now an emeritus professor at the University of British Columbia, began investigating some of these anecdotal suspicions. In an influential 1994 publication, she noted that the main distinction between children with a reading disability and those without was not their IQs, but the way their minds processed written words.

“The basic assumption that underlies decades of classification in research and educational practice regarding reading disabilities is becoming increasingly untenable,” she and her co-author wrote. In the same issue of the Journal of Educational Psychology, Fletcher and his colleagues observed that the “cognitive profiles” of poor readers who met the discrepancy definition and of those who didn’t were more similar than different. The key to diagnosing reading disabilities, they wrote, would be to instead measure “deficiencies in phonological awareness,” the ability to recognize and work with phonemes in spoken language.

Related: NAACP targets a new civil rights issue—reading

Since then, the scientific consensus against the discrepancy model has grown. One study found that regardless of their IQ, poor readers benefit from specialized reading instruction and support at statistically identical levels. Another used magnetic resonance imaging to show the same reduced brain-activation patterns in the left hemisphere (compared with those of typical readers) in weak school-age readers who were asked whether two written words rhymed—regardless of whether the weak readers met discrepancy criteria. Neuroscientist Fumiko Hoeft, who supervised the study at Stanford University’s Center for Interdisciplinary Brain Sciences Research, says it bolsters the idea that the discrepancy method makes an arbitrary distinction among different groups of poor readers. In fact, “dyslexia can occur in people of high, middle and low cognitive abilities,” noted Nadine Gaab, an associate professor at the Harvard Graduate School of Education.

By the 2000s, ample scientific evidence indicated the arbitrariness of IQ’s use as a basis for a dyslexia diagnosis. And there were mounting concerns that the discrepancy model was fundamentally racist and classist: it disproportionately prevented low-income children and children of color from getting help with learning disabilities. In 2004, the federal government reversed course on its 1970s guidance, strongly recommending that states consider alternatives.

 “I would…encourage this commission to drive a stake through the heart of this overreliance on the discrepancy model for determining the kinds of children that need services,” psychologist Wade Horn, then U.S. assistant secretary for children and families, told a panel of experts tasked with revising special education law in the early 2000s. “I’ve wondered for 25 years why it is that we continue to use it.”

But a 2018 study found that about one third of school psychologists were still using the discrepancy model to screen students for learning disabilities. And although most contemporary specialists concur that dyslexia is unrelated to intelligence, many of the most widely used definitions still refer to it as an “unexpected” disorder.

“These definitional issues are not trivial, because they drive research, they drive funding, they drive assessment, they drive everything,” said Julie Washington, a professor in the School of Education at the University of California, Irvine, whose research focuses on the intersection of language, literacy and poverty in African American children.

Even as more states and school districts move away from the discrepancy model, many researchers are concerned that they too often are replacing it with an equally problematic system. Often referred to as patterns of strengths and weaknesses or by Odegard as “discrepancy 2.0,” this method continues to rely heavily on cognitive tests and still calls for significant gaps between ability and performance for a student to qualify as having a learning disability. “Schools still want simple formulas and put way too much emphasis on the testing,” Fletcher said.

Twice in elementary school, Texas student Marcelo Ruiz, who lives just north of Houston, was denied a dyslexia diagnosis because of “discrepancy 2.0.” He had high cognitive scores, but evaluators said he did not show skill gaps in the areas he needed to qualify as dyslexic. School got harder and harder for Ruiz, and in high school he was still inverting letters and having trouble with reading. In the fall of 2022, his senior year, the teenager finally got a dyslexia diagnosis, but by then it was far too late to give him the help he had long craved. Because of his mediocre grades, Ruiz says, he had difficulty getting admitted into four-year colleges; he is currently at a community college and hoping to transfer. “Growing up, I felt stupid,” the 18-year-old says. “My grades kept going down, and I didn’t know what was wrong with me. It was really demotivating not knowing what I had and what you could do for it, not being able to get help.”

Texas mother Kodie Bates fought a similar battle on behalf of her sons—with the district reversing its opinion on whether the children had dyslexia. Both boys were diagnosed at the age of 7 with dyslexia using a method that still relied on testing and principles similar to the discrepancy model. However, the district did not provide any special education services. So in 2019, Bates began to push for an individualized education program, or IEP, that would delineate specific reading supports for her older son.

The district fought back, and a year ago, when her older son was 12, tried to reverse its own dyslexia diagnoses.

In a 34-page report provided by Bates and a special education advocate, the diagnostician for the Hooks Independent School District in northeastern Texas cited low cognitive scores in most areas for the older boy, arguing that the family’s decision to homeschool him may have impaired his cognitive abilities. “He does not have an unexpected (deficit)… Everything is in the below average range—to have dyslexia there has to be an unexpected (deficit) and I did not find one,” the diagnostician said, according to a transcript of a meeting held to discuss the report.”

“First they didn’t want to give him the services, and now they want to say that he is not even dyslexic—he’s just not smart,” Bates says. “It’s just not fair to take away a disability.” Last spring, an independent evaluator paid for by the district determined that her sons were, in fact, dyslexic as the district originally had found. Bates said she was grateful that the school is now offering services but has decided to keep homeschooling her sons with the support of online reading specialists.            

“The boys are old enough now to be uncomfortable in such an environment and I don’t blame them one bit,” she said in an email.

They “are hesitant,” she added, “and let down.”

According to several researchers, a better—though hardly perfect—approach to assessing children for learning disabilities is “response to intervention,” or RTI. In this method, teachers intervene early with struggling readers and monitor how they respond to help, making a referral for special education services after what one research paper dubbed a “student’s failure to respond to treatment.”

Some states already require exclusive use of RTI, although it can be hard to implement because teachers have to be well trained in what interventions to administer and how to determine whether they are working. When teachers do make a referral for special education services, there’s often still a question of how—and whether—to make a learning disability determination.

For this reason, some experts in the field say they would like to see more no-cost or low-cost access to the kind of testing that qualified neuropsychologists do: assessing a child’s capacity for and speed at the many components that make up successful reading. (One bill pending in New York State would mandate that private health-care plans pay for neuropsychological exams focused on dyslexia.) The specifics can look quite different for a seven-year-old than for a high school student, Gaab explained. But generally, experts say testing should be used to gauge such skills as a child’s ability to recognize “sight words” (common words that often come up in reading), to sound out “nonsense” words that follow the rules of the English language but are not actual words, and to read under timed conditions and spell words correctly in their writing.

Related: Want your child to receive better reading help in public school? It might cost $7,500

It isn’t out of the question for school districts to do this type of testing on their own—and some of the best-resourced ones already do, or they contract with an outside neuropsychologist. But for most school psychologists, it would represent a departure from decades of training and practice focused on the administration of IQ and cognitive tests. The discrepancy model is “easier” because a child either meets the cutoff or doesn’t.

“It reminds me of leeching blood,” said Tiffany Hogan, a professor and director of the Speech & Language Literacy Lab at the MGH Institute of Health Professions in Boston. “They did that for a long time knowing it wasn’t the best way, but there was no replacement.”

Another largely overlooked reason for the continued prevalence of discrepancy-based testing may be that the families most hurt by it are the least powerful in terms of their influence over public school practice and policy. Many schools feel pressure, both covert and overt, to not identify children with dyslexia because there aren’t enough specialists or teachers trained to work with them. Families with money, power and privilege can negotiate with the district more effectively to meet their child’s needs or hire an advocate or lawyer to lobby on their behalf. If diagnosis and help still remain elusive, they can pay for private neuropsychological exams, which can cost thousands of dollars. They also can, and often do, circumvent the public system entirely by hiring private reading tutors or sending their children to private schools focused on reading remediation. (Often these schools also use the discrepancy model to determine whom to admit.) For all these reasons, as well as the discrepancy model’s bias favoring high IQ scores, dyslexia has long had a reputation as a “privileged” diagnosis.

The dyslexia advocacy community has in some states also been predominantly white and financially privileged, with low-income families and parents of color more likely to fear the stigma of a disability diagnosis. “Historically, we don’t talk about learning disabilities and mental health in the Black community because there’s a stigma and shame attached to it,” said Winifred Winston, a Baltimore mother who hosts the Black and Dyslexic podcast. “Enslaved people could not show any sign of weakness or perceived weakness. So we have a history of being ‘okay’…(even) when we are in fact not okay or do require assistance.”

Partly through the leadership of parents such as Winston, that’s changing as more families learn about reading disabilities and the extra support a diagnosis can bring.

Now 71 and 81, respectively, Jack Fletcher and Linda Siegel are still fighting to get children equal access to essential help in learning how to read. They are part of a broad-based effort seeking to strengthen access to general reading instruction for all so that fewer students get held back by learning disabilities or need intensive reading remediation. Many states are doing just that, with a growing number passing legislation promoting the “science of reading,” which emphasizes explicit and systematic instruction in phonics. Early screening for language challenges in the youngest grades is also key.

Still, Odegard said he regularly hears from families frustrated that their kids were disqualified from reading services for the same reason he was testing determined that they are not “smart” enough to be dyslexic. Odegard isn’t surprised that his own IQ was below average, given the correlation to socioeconomic status. His parents had modest-paying jobs in retail and neither had a college education. 

The idea of distributing limited, extra help to students with high cognitive scores has deep roots in an American psyche “built off a mindset that somehow there are people who are chosen to move forward and some that are not,” Odegard added. It’s not dissimilar to “gifted” programs for children with high IQs or dual language programs that are only accessible to students with above average reading abilities. It’s the early, often irreversible, accrual of opportunity based on a limited, highly fallible notion of human potential.

Over the years, Odegard says, some colleagues and friends have remarked that, given his success, the experience must have made him stronger—a characterization he resents. “It wasn’t a gift,” he said. “I don’t see any of those challenges of having to stay up later and work five times harder as helpful.” Growing up, “I had a huge chip on my shoulder.”

On reflection, though, Odegard says there was perhaps one benefit to his early educational struggles. “If there was any gift I got from dyslexia, it was to have a lot of compassion and empathy,” he asserted, “because I could never hide in school that I couldn’t read and spell.” 

Reporting on this piece was supported by the O’Brien Fellowship in Public Service Journalism at Marquette University and the Russell Sage Visiting Journalist Fellowship.

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

The post How a disgraced method of diagnosing learning disabilities persists in our nation’s schools appeared first on The Hechinger Report.

About 20 years ago, I had a transformative reporting experience when I was assigned to “shadow” a 4-year-old named Jaylen at a Milwaukee preschool. I mistakenly assumed the day would bring mostly cuteness and little substance, and I remember being struck by how much these young students learned, virtually every second of the school day. And because I could not interview the kids in quite the same way as older ones, I was forced to be a much closer observer of how that learning, and associated teaching, happened, from the way the children explored blocks of different geometric shapes to the way the teacher habitually explained the meaning of different words as she spoke.

Over the years, I’ve gravitated back to early childhood stories again and again: writing a magazine feature on the power of a holistic model of early childhood care that considers the families’ needs as much as the children’s; editing and contributing to a project on the critical, often neglected 2-year-old year; and, most recently, probing racial disparities in access to reading help in the early elementary years. This academic year, I’m thrilled to be contributing regularly to Hechinger’s early childhood newsletter and coverage.

If you take all the vast human potential and the vast inequities endemic to the K-12 education system and magnify them, you have the stuff of the early childhood education beat. Ninety percent of a child’s brain develops by the age of 5, yet in many communities we pay and treat those entrusted with their care and development like fast food workers (and I’m not defending the low pay and poor treatment of fast food workers here).

Over the last three years, most of my reporting for Hechinger has focused on racial inequities in our “system” of care and education for infants, toddlers and early elementary students. In Boston, I reported on how the racist and sexist roots of the child care system, stretching back to free child care provided by enslaved people since 1619, continue to shape the deplorable conditions workers face today. And earlier this year, I spent several months investigating why Black and Latino infants and toddlers are so severely under enrolled in early intervention in some communities.

I’ll be continuing to look into these and related issues, and would love to hear from you. Some topics I know I’ll likely be reporting on include: challenges and innovations in early childhood education math instruction; the latest data and trends on exclusionary discipline of pre-K children; strategies for addressing the therapist shortage in early intervention; the child care crisis and potential solutions being explored at the state level; the use, and misuse, of cognitive testing in the early years; and forms of academic tracking in elementary school.

Please reach out about any of these topics – and more. My email is sec2002@columbia.edu. I look forward to hearing from you!

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

The post Back on the beat: A reporter’s view of early education appeared first on The Hechinger Report.

Para cuando su hija cumplió 3 años, Ramona Santos Torres notó que había algo que no estaba del todo bien en su habla. La niña pequeña balbuceaba, pero nada de lo que decía era inteligible. Rara vez hacía contacto visual con otras personas. Santos Torres sabía que la mayoría de los bebés comienzan a decir algunas palabras reconocibles antes de que cumplan los 2 años. “Simplemente no podíamos entender lo que estaba diciendo”, recordó Santos Torres.

La madre, que vive en Providence, Rhode Island, se lo mencionó al pediatra de su hija. Él rápidamente descartó la preocupación, diciendo que el retraso del habla se debía a que la familia hablaba español e inglés en casa. “Fue tan frustrante lo poco que me escuchaba”, dijo Santos Torres. (Los estudios han demostrado que el bilingüismo temprano puede, de hecho, conferir beneficios sociales y cognitivos.)

Cuando a la niña la diagnosticaron con autismo y retrasos cognitivos un par de años después, no se sentía como una reivindicación, porque Santos Torres sabía que su hija había perdido una ayuda crucial durante los años críticos del desarrollo del cerebro. Ella ahora es una adolescente.

“Nos perdimos el periodo de 1 a 4, que es una edad tan preciosa”, dijo Santos Torres.

En 1986, el gobierno federal exigió que los estados proveyeran terapia a recién nacidos y niños pequeños con retrasos en el desarrollo y con discapacidades. Pero desde su inicio el programa ha sido afectado por graves brechas raciales en el acceso y la calidad. Según un estudio de investigadores de la salud pública de Boston University, para cuando cumplen 2 años, es cinco veces menos probable que niños afroamericanos elegibles con retrasos en el desarrollo reciban servicios de “intervención temprana” (el nombre de las terapias ofrecidas desde el nacimiento hasta los 3 años), en comparación con niños blancos similares. Además, datos federales recientes muestran que más de 15 estados, incluyendo Rhode Island, atienden a menos de 200 niños afroamericanos con intervención temprana en todo el estado—una fracción del número que los expertos dicen que necesita ese apoyo, la cual puede incluir fisioterapia y terapia del habla.

Sin embargo, hay niños afroamericanos y latinos sobrerrepresentados en algunos lugares y subrepresentados en otros. Pero investigaciones muestran que incluso donde los niños afroamericanos y latinos se matriculan en grandes cantidades, tienen experiencias peores que sus contrapartes blancas. Eso puede incluir más largas demoras para encontrar terapeutas y menos acceso a las terapias más útiles, incluidas las sesiones en persona.Por ejemplo, en el estado de Nueva York, los niños blancos fueron referidos a intervención temprana a edades más tempranas que los niños afroamericanos e hispanos, según una auditoría reciente. El reporte también informó que los niños afroamericanos tenían menos probabilidad de recibir terapia dentro de 30 días, que es el periodo requerido, que los niños blancos.

“Una de las cosas que vemos constantemente en la pediatría es que los niños de color reciben menos de todo”, dijo Katharine Zuckerman, profesora asociada de la pediatría en Oregon Health & Science University (la Universidad de Salud y Ciencia de Oregon), quien ha estudiado las disparidades raciales en los diagnósticos del autismo y otras condiciones. “Ellos reciben menos antibióticos. Ellos reciben menos intervención temprana”.

Related: Derechos civiles en riesgo: Estudiantes afroamericanos y latinos son suspendidos más por faltar a clase.

En los últimos años, un número creciente de padres, investigadores y políticos han enfocado su atención en estas brechas persistentes. Según ellos argumentan, las brechas juegan un papel fundamental—y uno que ha sido ignorado por mucho tiempo—en la formación de las desigualdades educativas años y décadas después de que los niños comienzan la escuela. Zuckerman relaciona esto a la ley de rendimientos decrecientes: Los cerebros de los niños se desarrollan mucho más rápidamente entre el nacimiento y los 5 años que en cualquier otro período de su vida. Entonces, un año de terapia del habla de alta calidad, por ejemplo, puede rendir mucho más para un niño de 2 años que para uno de 10 años. Un estudio encontró que la mitad de los niños terminan la intervención temprana con un nivel de funcionamiento apropiado para su edad y no requieren servicios de educación especial en el kínder.

De hecho, las desigualdades en la intervención temprana contribuyen a grandes brechas en la matriculación en educación especial. Los estudiantes afroamericanos y latinos están sobrerrepresentados en muchas categorías, dicen los expertos, en parte porque es mucho menos probable que obtengan el tipo de ayuda adecuado antes de que empiecen en la escuela. Considere Washington D.C.: Los niños afroamericanos de ahí representaron menos de la mitad de los niños que recibieron intervención temprana en 2021, pero representaron el 76 por ciento de los que recibieron educación especial para niños de edad escolar. En Maryland, esas cifras fueron 31 por ciento y 41 por ciento, respectivamente.

La creciente ola de defensa tiene como objetivo combatir las disparidades de maneras diferentes. En Providence, una nueva organización comunitaria cofundada por Santos Torres ayudó a liderar una campaña exitosa para aumentar los fondos para la intervención temprana, reconociendo que las familias latinas y afroamericanas suelen sufrir más cuando haya escasez de proveedores y servicios. En Denver, las clínicas pediátricas están probando una nueva guía de comunicación que intenta proveer a los padres de grupos históricamente marginalizados con más información sobre sus hijos y sus opciones—y más apoyo en sobre cómo seguir adelante.

La administración de Biden ha redactado varias propuestas de presupuesto que aumentarían sustancialmente los fondos federales para los servicios de intervención temprana, con un enfoque en expandir el acceso para las comunidades históricamente subrepresentadas.

“Si dependiera de nosotros, todos los niños que pudieran beneficiarse de intervención temprana serían elegibles”, dijo Katherine Neas, subsecretaria adjunta del Departamento de Educación de los EE.UU. “Esa es nuestra meta”.

No obstante, aún las propuestas anteriores que habrían casi duplicado los fondos federales, no satisficieran todas las necesidades sin más inversiones a nivel estatal, dijo Neas.

“Las necesidades, y lo que podemos proporcionar, no están alineados—aún con los aumentos importantes que esta administración ha presentado”, dijo Neas. En marzo, la administración de Biden propuso un aumento de casi $400 millones para intervención temprana. El año pasado propuso un aumento aún más grande, pero al final el Congreso aprobó un aumento mucho menor de $43,7 millones.

“Demasiadas comunidades tienen expectativas muy bajas para las familias de bajos ingresos en general, y para las familias de bajos ingresos que tienen niños con discapacidades, las expectativas son más bajas aún”, dijo Neas. Agregó que eso es a pesar del hecho de que “las investigaciones en términos de lo que significa para la vida de un niño si recibe servicios de intervención temprana son bastante profundas”.

Cuando el Congreso aprobó la ley federal para la intervención temprana, conocida como la Parte C de la Ley de Educación para Individuos con Discapacidades (IDEA), otorgó a los estados un gran nivel de autonomía. Por ejemplo, algunos estados operan el programa a través de sus departamentos de salud, mientras en otros estados es una rama de sus departamentos de educación. Y algunos estados dependen más fuertemente de Medicaid como fuente de financiamiento que otros.

Por lo general, intervención temprana está proveyendo mucho menos servicios que debe. En un estudio, unos expertos estimaron que el 13 por ciento de los bebés y niños pequeños tienen retrasos en el desarrollo que les daría derecho a intervención temprana, pero encontraron que cuando tenían 2 años, solo un 10 por ciento de aquellos niños con retrasos en el desarrollo habían recibido servicios.

Los bebés más pequeños a veces son los más desatendidos: Muchas familias, e incluso sus médicos, no se dan cuenta de que los niños que nacen con condiciones como el síndrome Down y la espina bífida califican automáticamente para una intervención temprana, igual que la mayoría de los bebés ingresados en las unidades de cuidados intensivos neonatales de los hospitales. Y aquellos que si lo saben a menudo se enfrentan a una grave escasez de terapeutas. “He oído a médicos decir que no se sienten cómodos refiriendo a servicios que no están disponibles”, dijo Karen Berman, directora sénior de política de Illinois en Start Early en Chicago, que aboga por asuntos de la primera infancia. En Illinois, una encuesta en un hospital encontró que alrededor del 85 por ciento de los bebés que fueron referidos a intervención temprana en la unidad de cuidados intensivos neonatales no habían sido conectados con los servicios antes de su chequeo de 3 meses.

En Illinois ni en otros lugares, la pandemia no ha ayudado con la situación. En muchas comunidades, provocó una gran renuncia de los terapeutas de intervención temprana, muchos de los cuales perdieron sus salarios cuando la pandemia cerró los servicios temporalmente. Según información compilada en una reunión el año pasado de coordinadores estatales de intervención temprana, ese éxodo, combinado con una acumulación de niños que necesitaban terapia una vez que terminaran las restricciones de Covid, dejó a aproximadamente 75 por ciento de los estados con listas de espera para terapias tempranas críticas.

Related: Escasean los fondos y la capacitación cuando quienes cuidan a tus hijos son amigos y vecinos

Desde los primeros días de la infancia hasta la niñez temprana —cuando la mayoría de los niños comienzan a hablar, caminar y comer alimentos sólidos— pueden estar marcados por las disparidades raciales en el acceso a la intervención temprana. No hay respuesta sencilla ni única al porqué. En algunos casos, el personal médico o educativo puede tener prejuicios raciales o ser culturalmente ignorante. En otros casos, las familias pueden dudar de aceptar la ayuda de desconocidos, o de reconocer que su hijo o hija tenga una discapacidad. Además, las familias afroamericanas y latinas, en promedio, suelen tener más probabilidad de ser de bajos ingresos que las familias blancas, y los padres y guardianes que trabajan muchas horas en trabajos de bajos salarios a menudo les falta tiempo y flexibilidad para navegar una burocracia desmoralizante a conectarse con apoyo frecuentemente difícil de alcanzar.

Todos estos problemas estaban en juego para Santos Torres, quien no sabía nada de la intervención temprana cuando hace años le preguntó al pediatra sobre el retraso del habla de su hija. Santos Torres dijo que provenía de una familia escéptica y desconfiada sobre la idea misma de las discapacidades. “Hay un estigma sobre eso que puede ser enorme”, ella dijo. “La mentalidad era, ‘Ella lo va a dejar atrás. No es nada. Está bien’. Le tomó años a mi propia familia aceptar su discapacidad”.

Aproximadamente un año después, cuando quedó claro que no estaba “dejando atrás” sus problemas, la niña finalmente fue referida para una evaluación. Cuando comenzó las terapias en el hogar a los 5 años, cambió radicalmente la vida de su madre. Santos Torres tuvo que dejar su trabajo en un almacén para coordinar los servicios y estar en casa para la terapia de su hija. La pérdida de ingresos hizo que la familia tuviera que mudarse a una vivienda pública. “No había otra opción”, dijo Santos Torres. Después de haber perdido la intervención temprana, “fue una carrera contra el tiempo”.

Numerosos estudios han demostrado que la desconfianza en los médicos, educadores y terapeutas, la mayoría de los cuales son blancos, es una gran barrera para acceder a la intervención temprana que enfrentan muchas familias afroamericanas en particular.

“Hay un temor de confiar en una fuerza laboral abrumadoramente blanca y monolingüe junto al asunto de que las familias de color ven las discapacidades y los retrasos de maneras muy diferentes”, dijo Evandra Catherine, profesora asistente en el programa de primera infancia en Arizona State University.

Un estudio que incluía en su mayoría familias afroamericanas y familias de bajos ingresos encontró que muchos padres creen que los retrasos en el desarrollo desaparecerán por sí solos y muchas veces prefieren ayudar a sus hijos por su cuenta. El estudio también encontró que el personal de las agencias de intervención temprana reportó que algunos padres confundían los servicios de intervención temprana con los servicios de protección infantil, percibiendo la intervención no solo como una intrusión, sino como una amenaza real.

Micaiah Young, que vive en un suburbio de Milwaukee, dijo que tuvo que superar su desconfianza hacia el administrador escolar blanco de un programa Montessori que le dijo hace unos años que su hijo preescolar tenía un retraso del habla. El personal de la escuela predominantemente blanca había hecho comentarios negativos sobre su hijo en varias ocasiones. Él recuerda una conferencia en la que un maestro solo dijo cosas negativas sobre el niño, quien solo tenía 3 años en ese entonces. “Sabía que estaba lidiando con el racismo contra mi hijo”, dijo Young. “Pero por alguna razón, cuando hizo el comentario sobre los retrasos del habla, me di cuenta: Esto es probablemente cierto”.

Aunque 13 por ciento de los bebés y niños pequeños tienen retrasos en el desarrollo que les daría derecho a intervención temprana, solo un 10 por ciento de aquellos niños habían recibido servicios antes de cumplir 2 años.

El padre tomó un acto de fe para seguir el consejo del administrador—

uno que está contento de haber tomado, ya que su hijo se benefició enormemente de la ayuda temprana e individualizada. Pero Young comprende la reticencia de muchas familias afroamericanas a participar en la intervención temprana y la educación especial. Les preocupa que, sin personal y comunicación más diversos y culturalmente sensibles, “muchos niños afroamericanos seguirán pasando desapercibidos”.

Otros padres encuentran un obstáculo opuesto: Desesperadamente quieren ayuda para sus hijos pequeños discapacitados y enfrentan tratos despectivos o parciales cuando la intentan obtener.

Catherine dijo que puede ser que los médicos blancos están menos preocupados cuando los niños afroamericanos no alcanzan los hitos del desarrollo debido a amplios “estereotipos y prejuicios de que las personas afroamericanas son menos inteligentes”. Ella comparó tales rechazos con “médicos que no creen a las personas afroamericanas cuando están sufriendo dolor”.

“No se trata solamente de la intervención temprana, sino de remisiones para servicios preventivos o el manejo del dolor. Existe mucho prejuicio implícito”.

Naiommy Baret, una madre de Providence, Rhode Island, dijo que durante los últimos años a veces se sentía desestimada e infravalorada cuando interactuaba con médicos mientras ella intentaba conseguir que su hijo fuera diagnosticado y tratado por un retraso del habla y epilepsia. “Una de las cosas por las que realmente abogo es elevar las voces de los padres y llevar sus recomendaciones a la práctica”, dijo ella. “A veces, los médicos proveen información que puede ser muy inquietante para las familias. Y tienen que combinar la humildad cultural con comprensión sobre lo difícil que puede haber sido el proceso para las familias”.

Sanaa Sharrieff, una madre de North Carolina, dijo que encontró una forma de prejuicio implícito hace unos años cuando intentó obtener servicios de intervención temprana para su hijo pequeño, el cual ella sospechaba que tenía autismo.

Algunos maestros y otras personas que trabajaban con él “presumían que él tenía problemas de la conducta” y resistían a que lo evaluaran sobre autismo, dijo la madre. Ella tuvo que esforzarse durante años para obtener una evaluación psicológica completa. Cuando finalmente lo logró, su hijo ya tenía 7 años. La evaluación confirmó que él tenía autismo, pero llegó demasiado tarde para recibir terapias ocupacionales, físicas, del habla y de otros tipos en un momento en que quizás podrían haber sido más beneficiosas.

“Es mi firme creencia”, dijo Sharrieff, “que mi estatus socioeconómico, mi raza y mi estatus de aseguranza fueron barreras patentes a obtener esos servicios para mi hijo”.

Cuando se trata de la intervención temprana, los obstáculos no se acaban con el acceso básico. Zuckerman, de Oregon Health & Science University, dijo que enfocarse simplemente en las disparidades raciales en la participación oscurece un problema aún mayor en algunas comunidades: La experiencia desigual que muchas familias de color experimentan una vez que ingresan al programa. Un estudio que ella coescribió, por ejemplo, encontró que los niños pequeños latinos de familias hispanohablantes eran tan propensos como los de habla inglesa a ser diagnosticados con retrasos del habla, si no más. Pero sus diagnósticos eran menos específicos—en vez de identificar un desafío de articulación particular, los niños latinos solían recibir la designación general de “retraso del lenguaje”—y por lo tanto menos útiles para conectar a las familias con las terapias más beneficiosas. “El personal de intervención temprana no está bien equipado para evaluar a niños de diversos orígenes”, ella dijo. 

Related: ​​Por qué los estudiantes blancos tienen 250% más probabilidad de graduación en universidades públicas en comparación a los estudiantes afroamericanos   

También, para las familias latinas y afroamericanas, frecuentemente es más difícil encontrar terapeutas. Tatyana Pacheco, una madre de Brooklyn, no tuvo problema en obtener la aprobación para los servicios de intervención temprana hace casi un año. Su hijo, que entonces tenía 1 año, no estaba alcanzando los hitos del desarrollo: seguir una orden de un paso o jugar apropiadamente con juguetes.

Pero le tomó meses, ella dijo, encontrar un terapeuta dispuesto a ir en persona a su apartamento. Habían pocos disponibles para terapia en persona en su vecindario predominantemente afroamericano en Brooklyn, dijo Pacheco, mientras que los vecindarios más blancos y ricos tenían listas de terapeutas mucho más largas. De hecho, los niños afroamericanos y latinos de bajos ingresos en la ciudad de Nueva York tienen mucha menos probabilidad de recibir servicios oportunos de intervención temprana—o en absoluto, según un reporte de 2019 de Defensores de Niños de Nueva York. Pacheco sospecha que algunos terapeutas no quieren ir a su barrio debido a creencias erróneas sobre las altas tasas de crímenes. “A muchos de nosotros, los padres, nos gusta que sea en persona, pero muchos de estos terapeutas no quieren salir a los vecindarios”, ella dijo.

Eventualmente, la familia encontró un terapeuta dispuesto a venir en persona para ayudar al niño que ahora tiene 2 años, ayudándolo con habilidades motrices y cognitivas. Pero después de meses de búsqueda, a principios de enero no habían encontrado un segundo terapeuta para ayudar al niño con los retrasos del habla. Sintiéndose desesperada, a fines del año pasado Pacheco accedió a probar una sesión de terapia del habla virtual con su niño pequeño. A su hijo le fue difícil concentrarse en los videos de YouTube de “alguien leyendo un libro”, dijo su madre. La terapeuta es una “señora amable”, dijo Pacheco, pero una lección genérica por computadora no captó el interés de su niño de 2 años.

“No funcionó en lo absoluto”, dijo su madre.

No es poco común que los padres que se han sentido mal atendidos—o completamente descuidados—por intervención temprana se conviertan en líderes para abogar por una expansión del acceso. Para Santos Torres, fue una evolución paulatina. Después de que renunció a su trabajo y se mudó a la vivienda pública, se volvió más segura de si misma y de su conocimiento sobre cómo navegar el sistema de educación especial de Providence.

A la larga, ella se dio cuenta de que quería dedicar su carrera a apoyar a padres con desafíos similares—o incluso mayores, ya que ella, a diferencia de muchos de sus iguales, habla inglés con fluidez. Santos Torres regresó a estudiar trabajo social, y durante casi una década ha trabajado como defensor de los padres. Hace cinco años, ella cofundó Padres Lideres por la Equidad Educativa, que en 2021 enfocó parte de sus esfuerzos en fortalecer el sistema de intervención temprana del estado.

“Mi experiencia con mi hija fue hace 15 años”, ella dijo, “y, a pesar de eso, hoy oigo que suceden las mismas cosas”.

Durante más de un año, Santos Torres ha convocado grupos de trabajo de padres —la mayoría, como ella, mujeres de clase trabajadora con hijos con discapacidades— para diseñar recomendaciones para fortalecer la intervención temprana en Rhode Island. Entre sus prioridades: aumentar la diversidad entre los proveedores de intervención temprana, ofrecer terapias en horarios no tradicionales, y crear una línea de ayuda estatal multilingüe para las familias que necesitan ayuda con cualquier parte del proceso.

El objetivo es crear un sistema de intervención temprana diseñado y moldeado más directamente por las familias a las que sirve, dijo Santos Torres. “Estamos pidiendo a los proveedores y a los responsables que compartan el poder con las familias”, ella dijo.

“Una de las cosas que vemos constantemente en la pediatría es que los niños de color reciben menos de todo”.

Katharine Zuckerman, profesora asociada de la pediatría en Oregon Health & Science University

El pasado junio, los esfuerzos del grupo ayudaron a impulsar a los legisladores estatales a aumentar sustancialmente los fondos para los proveedores de servicios de intervención temprana—aumentando las tasas de reembolso un 45 por ciento, el primer aumento de cualquier tipo en 20 años. En Rhode Island, los reembolsos se realizan principalmente a través de Medicaid, que atiende a las personas con bajos ingresos o discapacidades.

Padres Lideres por la Equidad Educativa también ha convocado a padres, líderes de agencias estatales y superintendentes para intercambiar ideas sobre prioridades para servir mejor a los niños pequeños con discapacidades. Y están trabajando en obtener más datos sobre el número y la demografía de las familias en la lista de espera para servicios de intervención temprana del estado.

En Denver, varias familias ayudaron a crear una nueva herramienta de comunicación dirigida a mejorar la forma en que los médicos y otros proveedores hablan con los padres y guardianes sobre los retrasos en el desarrollo, dijo Dawn Magnusson, una fisioterapeuta que encabezó el esfuerzo. Magnusson es profesor asistente en University of Colorado’s School of Medicine (la Facultad de Medicina de la Universidad de Colorado) y ha realizado amplias investigaciones sobre las disparidades raciales en la intervención temprana.

“Lo diseñamos para facilitar una conversación cuando haya una preocupación sobre el desarrollo de un niño, particularmente cuando hay una desconexión o discordancia entre el proveedor y los padres o guardianes”, dijo Magnusson.

“A pesar de un mayor conocimiento, estamos en una de las crisis más agudas jamás vistas para la intervención temprana”.

Karen Berman, directora sénior de política de Illinois en Start Early en Chicago

La guía de comunicación, que se está probando en cuatro clínicas pediátricas en el área de Denver, tiene como objetivo “ralentizar” la conversación para que tanto los médicos como los padres o tutores comprendan mejor la perspectiva del otro. Incluye apuntes de muestra y también preguntas que los médicos y otros proveedores pueden consultar, como: Suena que a [nombre del niño] le gusta __ y le cuesta un poco de trabajo con __. ¿Qué ve usted que serían los próximos pasos para apoyar el desarrollo de su hijo? O, Cuénteme sobre cualquier servicio o programa en el que esté participando para ayudar a apoyar el desarrollo de su hijo. ¿Qué está sucediendo ya para apoyar el desarrollo de su hijo?

La guía anima a los proveedores a ser curiosos, pero no intrusivos en determinar por qué una familia pueda desconfiar de la intervención temprana. Puede ser que una madre prefiera confiar en el consejo y el apoyo de su familia, por ejemplo. O puede ser que a una inmigrante indocumentada le preocupe que un desconocido visite su casa. Estas dos preocupaciones tendrían que ser tratadas—

y posiblemente abordadas—de maneras muy diferentes.

“La confianza y la comprensión no son inherentes a estas relaciones”, dijo Magnusson, “y necesitamos construirlas y desarrollarlas con las familias”.

En algunas comunidades, el acceso equitativo a los servicios de intervención temprana se ha convertido en una prioridad de derechos civiles para los líderes afroamericanos. En Illinois, por ejemplo, hace más de dos años Start Early habló en las audiencias del Illinois Legislative Black Caucus (el grupo afroamericano de la asamblea legislativa de Illinois) sobre varios desafíos que enfrentan los niños pequeños y sus familias en el estado. Los legisladores se apresuraron a expandir el acceso a intervención temprana como una prioridad para la primera infancia, citando el mayor número de bebés y niños pequeños afroamericanos y latinos que languidecen en las listas de espera para recibir servicios en el estado. “Es inmensamente útil cuando haya legisladores exigiendo acción”, dijo Berman.

En 2021, el Black Caucus impulsó una serie de cambios para ampliar el acceso a la intervención temprana, incluida la creación de proyectos de demostración en dos unidades de cuidados intensivos neonatales en hospitales, con la intención de modelar cómo conectar más rápidamente a las familias con los servicios.

A pesar del progreso en Illinois, Rhode Island y otros estados, las listas de espera para los servicios siguen siendo largas en la mayoría de los estados. Los expertos dicen que el sistema ha sido infradotado durante tanto tiempo, con los terapeutas con frecuencia ganando solo una fracción de la tarifa por hora que podrían ganar en el sector privado, que las reformas podrían tardar muchos años en tener un impacto profundo. “A pesar de un mayor conocimiento, estamos en una de las crisis más agudas jamás vistas para la intervención temprana”, dijo Berman.

Santos Torres planea seguir abogando hasta que haya disminuido el riesgo de que otra familia sufra lo que sufrió ella. Su hija ahora tiene casi 18 años y asiste a una pequeña escuela secundaria privada en Rhode Island enfocada en niños con necesidades especiales. La adolescente ha progresado considerablemente, pero aún le toma más tiempo cosas como atar los cordones de sus zapatos. Ella también todavía tiene dificultad en pronunciar ciertas palabras correctamente. Santos Torres sabe que será un reto para su hija obtener un título universitario. “Todavía no está preparada para la universidad”, dijo la madre.

Santos Torres está segura de que las necesidades de su hija no serían tan graves si hubieran podido acceder a ayuda antes. “Tengo que creer que en cuanto al habla y algunas de las habilidades motrices, hubiera sido diferente si hubiera recibido los servicios antes”, dijo la madre. “¿Pudo la intervención temprana haber resuelto todos estos problemas con los que todavía se enfrenta? No sé. Es una pregunta que ninguna familia debería tener que hacerse”.

El reportaje de Carr para este artículo fue apoyado por el Dart Center on Trauma and Journalism’s Early Childhood Global Reporting Fellowship, una beca.

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