Mireya Barrera no quería pelear.

Durante años, se sentó en las reuniones con los docentes de educación especial de su hijo, luchando por mantener una sonrisa mientras entendía poco de lo que decían. En las ocasiones poco comunes en que se pedía ayuda a otros docentes que hablaban el idioma de Barrera, el español, las conversaciones seguían siendo vacilantes porque no eran intérpretes calificados.

Pero cuando su hijo Ian entró en la escuela secundaria, Barrera decidió invitar a un voluntario bilingüe de una organización local sin ánimo de lucro para que se sentara con ella y recordara sus derechos al equipo escolar.

“Quería a alguien de mi lado”, dijo Barrera, cuyo hijo tiene autismo, a través de un intérprete. “Durante todo este tiempo, no nos estaban facilitando las cosas. Eso provocó muchas lágrimas”. 

Independientemente del idioma que hablen los padres en casa, tienen el derecho civil de recibir información importante de los educadores de sus hijos en un idioma que entiendan. En el caso de los estudiantes con discapacidad, la ley federal es aún más clara: las escuelas “deben tomar todas las medidas necesarias”, incluidos los servicios de interpretación y traducción, para que los padres puedan participar de forma significativa en la educación de sus hijos.

Pero, a veces, las escuelas de todo el país no prestan esos servicios.

Las familias que no hablan inglés se ven obligadas a asistir a las reuniones sobre el progreso de sus hijos sin poder opinar ni preguntar a los educadores cómo pueden ayudar. Las diferencias culturales y lingüísticas pueden convencer a algunos padres de no cuestionar lo que ocurre en la escuela, un desequilibrio de poder que, según los defensores, hace que algunos niños se queden sin un apoyo fundamental. En caso de ser necesario, no es infrecuente que las escuelas encarguen a los estudiantes bilingües la interpretación para sus familias, poniéndolos en la posición de describir sus propios defectos a sus padres y tutores.

“Eso es totalmente inapropiado, en todos los sentidos posibles, y poco realista”, dice Diane Smith Howard, abogada principal de la Red Nacional de Derechos de las Personas con Discapacidad. “Si al niño no le va especialmente bien en una asignatura académica, ¿por qué confiaría en que su hijo adolescente se lo contara?”.

Los distritos escolares culpan a la falta de recursos. Dicen que no tienen dinero para contratar a más intérpretes o a agencias de servicios lingüísticos y que, aunque lo tuvieran, no hay suficientes intérpretes calificados para hacer el trabajo.

En Washington y en algunos otros estados, la cuestión ha empezado a recibir más atención. Los legisladores estatales de Olympia presentaron este año una ley bipartidista para reforzar los derechos civiles federales en el código estatal. Los sindicatos de docentes de Seattle y Chicago negociaron recientemente, y consiguieron, servicios de interpretación durante las reuniones de educación especial. Y los distritos escolares se enfrentan a una creciente amenaza de demandas de los padres, o incluso a una investigación federal, si no se toman en serio el acceso lingüístico.

Aun así, los esfuerzos por ampliar el acceso lingüístico en la educación especial se enfrentan a una ardua batalla, debido al escaso número de intérpretes capacitados, la falta de cumplimiento a nivel estatal y el escaso financiamiento del Congreso (a pesar de que en 1974 prometió cubrir casi la mitad del costo adicional que supone para las escuelas proporcionar servicios de educación especial, el gobierno federal nunca lo ha hecho). El proyecto de ley bipartidista de Washington para ofrecer más protecciones a las familias fracasó repentinamente, después de que los legisladores estatales lo despojaran de disposiciones clave y los defensores retiraran su apoyo.

El sistema de educación especial puede ser “increíblemente difícil para todos”, dijo Ramona Hattendorf, directora de defensa de The Arc of King County, que promueve los derechos de las personas con discapacidad. “Luego todo se agrava cuando se introduce el idioma en la mezcla”. En todo el país, aproximadamente 1 de cada 10 estudiantes que califican para recibir servicios de educación especial también se identifican como estudiantes de inglés, según datos federales de educación, y esa proporción está creciendo. Cerca de 791,000 estudiantes de inglés participaron en educación especial en 2020, un aumento de casi el 30 % desde 2012. En más de una docena de estados, incluido Washington, el aumento fue aún mayor.

A medida que crece su número, también aumenta la frustración de sus padres con los servicios lingüísticos.

Durante el año escolar 2021-22, la defensora del pueblo en materia educación del estado de Washington recibió casi 1,200 quejas de los padres sobre las escuelas. Su principal preocupación, en todos los grupos raciales y demográficos, fue el acceso y la inclusión en la educación especial. La defensora del pueblo principal en materia de educación, Jinju Park, calcula que entre el 50 % y el 70 % de las llamadas que recibe la agencia son sobre educación especial, y que el 80 % de ellas son de clientes que necesitan servicios de interpretación.

Mientras que la mayoría de los estados conceden a las escuelas un máximo de 60 días desde que se remite a un estudiante a los servicios de educación especial para determinar si califica, las escuelas de Washington pueden tardar hasta medio año escolar. Y si un padre necesita servicios de interpretación o traducción, la espera puede durar aún más.

“Las leyes actuales no apoyan la participación plena de los padres”, escribió Park a los legisladores estatales en apoyo a la primera versión del proyecto de ley 1305 de la Cámara de Representantes, propuesta que finalmente fracasó. “Los padres para los que el inglés puede que no sea su lengua materna”, añadió, “a menudo, se ven abrumados por la información e incapaces de participar de forma significativa en el proceso”.

Barrera, cuyo hijo asistió al distrito escolar de Auburn, al sur de Seattle, dijo que, a menudo, se sentía excluida de su aprendizaje.

En el kínder, tras el diagnóstico de autismo de Ian, su equipo de educación especial llegó a la conclusión de que necesitaba un paraeducador asignado a tiempo completo, dijo Barrera. Recurrió a Google Translate y a otros padres para que la ayudaran a redactar correos electrónicos preguntando por qué no recibió ese apoyo hasta tercer grado. Sus solicitudes de copias traducidas de documentos legales quedaron en gran parte sin respuesta, mencionó, hasta que un director le dijo que la traducción era demasiado costosa.

Cuando Ian entró en la escuela secundaria, el acoso escolar y su seguridad se convirtieron en la principal preocupación de Barrera. Una vez llegó a casa sin un mechón de pelo, cuenta. A pesar de las repetidas llamadas y correos electrónicos a sus docentes, Barrera dijo que nunca recibió una explicación.

Además, cuando pidió ir a la escuela para observar, un docente le dijo: “Ni siquiera habla inglés. ¿Qué sentido tiene?”. Vicki Alonzo, portavoz del distrito de Auburn, afirma que el auge de la población inmigrante en la región en los últimos años ha llevado al distrito a destinar más recursos a ayudar a las familias cuya lengua materna no es el inglés. Casi un tercio de sus estudiantes son multilingües, dijo, y hablan alrededor de 85 idiomas diferentes en casa.

En el año 2019-20, el distrito gastó alrededor de $175,000 en servicios de interpretación y traducción, dijo; el año escolar pasado, esa cifra fue de más de $450,000.

Alonzo señaló que el distrito no recibió financiamiento adicional para esos servicios, que incluyeron alrededor de 1,500 reuniones con intérpretes y la traducción de más de 3,000 páginas de documentos.

El problema del acceso lingüístico es “un fenómeno nacional”, dijo Smith Howard, de la Red Nacional de Derechos de las Personas con Discapacidad. “Es un problema de recursos y también una cuestión de respeto, dignidad y comprensión, que todos los padres deberían recibir”.

Los docentes también están frustrados.

El sindicato de docentes de Seattle protestó y retrasó el inicio de las clases el año pasado por unas demandas que incluían servicios de interpretación y traducción en educación especial. El contrato final, que dura hasta 2025, exige que los miembros del personal tengan acceso a diversos servicios que proporcionen traducción telefónica (un intérprete en directo) o de texto (en el caso de documentos escritos). El objetivo de esta disposición es garantizar que no se pida al personal bilingüe que traduzca si no forma parte de su trabajo.

Los docentes dicen que estas herramientas han sido útiles, pero solo en cierta medida: en ocasiones poco comunes hay intérpretes telefónicos disponibles para los idiomas menos comunes, como el amárico, y son frecuentes los problemas técnicos, como la interrupción de las llamadas.

La disponibilidad de intérpretes “no es tan constante como nos gustaría”, afirma Ibi Holiday, docente de educación especial de la escuela primaria Rising Star de Seattle.

También hay una cuestión de contexto. Es posible que los traductores no tengan experiencia en educación especial, por lo que las familias pueden salir de una reunión sin entender todas las opciones, lo cual puede ralentizar el proceso significativamente.

“Para muchas familias, la escuela de su país funciona de forma completamente diferente”, explica Mari Rico, directora del Centro de Desarrollo Infantil Jose Marti de El Centro de la Raza, un programa bilingüe de educación temprana. “Traducir no bastaba; tenía que enseñarles el sistema”.

Muchas escuelas del distrito de Seattle cuentan con personal multilingüe, pero el número y la diversidad de idiomas hablados no es constante, afirma Rico. Y existe un mayor riesgo de que el caso de un estudiante se pase por alto o se estanque debido a las barreras lingüísticas. Dijo que ha tenido que intervenir cuando las familias han pasado meses sin una reunión del programa de educación individualizada, incluso cuando su hijo estaba recibiendo servicios.

Hattendorf, de The Arc del condado de King, dijo que las soluciones tecnológicas más económicas, como las que utiliza Seattle, ofrecen cierta ayuda, pero su calidad varía mucho. Y los servicios pueden no ofrecer a los padres tiempo suficiente para procesar información complicada y hacer preguntas de seguimiento, explicó.

Al sur de Seattle, los Barrera decidieron cambiar a Ian de escuela secundaria.

Se graduó este año, pero la ley federal garantiza sus servicios de educación especial tres años más. Ian asiste ahora a un programa de transición para estudiantes con discapacidad, donde aprenderá habilidades para la vida, como conseguir un trabajo.

“Sabemos que, con ayuda, puede hacer lo que quiera”, dijo Barrera.

Ya, añadió, “todo es diferente. Los docentes intentan encontrar la mejor manera de comunicarse conmigo”.

Este artículo sobre los servicios de interpretación fue elaborado por The Hechinger Report, una organización de noticias independiente y sin ánimo de lucro centrada en la desigualdad y la innovación en la educación, en colaboración con The Seattle Times.

The post Los padres de estudiantes de educación especial que no hablan inglés se enfrentan a otro obstáculo appeared first on The Hechinger Report.

Growing numbers of students need special education services. Yet there are fewer qualified clinicians who are willing and able to work in school buildings full time.

There is a new solution that exists, one that many other sectors have embraced: A hybrid, more flexible workforce.

The number of students deemed to need special education services increased by nearly a million students over the last decade, and it now makes up 15 percent of all public school enrollments.

The U.S. Bureau of Labor Statistics estimates a 19 percent growth in demand for speech language pathologists and a 12 percent growth in demand for occupational therapists over the next decade.

Since the start of the pandemic, more than two-thirds of public schools have reported increases in students seeking mental health services.

The effects of these strains on resources are far-reaching. Students and families are left waiting for critical services, while staffers are faced with ever-growing caseloads that lead to burnout and, in some cases, departure from the profession.

Students in low-income areas are already the least likely to have access to special education and early intervention services — a challenge exacerbated by staffing shortages.

Teletherapy services, provided online via live videoconferencing, were commonly used during the pandemic months when schools were shuttered and students needed connection with their therapists.

Related: Teletherapy has been powering virtual special education for years

Once clinicians learned how to work online, many embraced teletherapy, finding that it brought focus to their time with children and offered exciting new ways to engage in their sessions. A significant number of U.S. public school districts relied on it to provide critical special education services including psychological evaluations, speech therapy and occupational therapy to their students.

But when schools reopened, many prioritized a return to fully in-person services. Even though clinicians were ready to change how and where they worked, most schools were not. In discussions I’ve had with school leaders, many regarded teletherapy as an emergency stopgap, and in my view, that was a mistake.

Returning to the old ways of doing things just hasn’t worked. Many schools that dug in on resuming in-person services with no exceptions have been unable to fill vacancies across their special education teams.

And, for example, annual data from the American Speech-Language-Hearing Association shows that despite growing student needs, the percentage of certified speech language pathologists working in schools has been declining steadily for over a decade.

With staff shortages in critical areas, backlogs and compensatory time (to make up for services not provided) have been building up, signaling a need for a better solution.

Some districts are now turning to teletherapy services for special education as more than a temporary pandemic-era solution.

Some districts are now turning to teletherapy services for special education as more than a temporary pandemic-era solution, and are creating true hybrid service models, in which schools strategically utilize their in-person staff for emergent issues or high-need students, while virtual therapists provide support for ongoing special education service needs.

Data from my organization, Presence, a provider of teletherapy solutions, shows that some of the nation’s largest districts, and at least 10,000 forward-thinking schools, have adopted a hybrid model to ensure support for students, clinicians and school and district leaders.

With the capability to deliver a portion of services online, districts can offer services and stability for students regardless of their zip code. The hybrid model also enables school administrators to increase capacity and balance workloads by retaining great therapists while adding more diversity and deeper specialties to the talent pool.

For example, Newberg-Dundee Public Schools in Oregon embraced teletherapy to assess and address the needs of their students faster and have since seen positive results. Teachers in the district told us that many students appear to be more eager to attend their teletherapy sessions. They said that students often seem more focused in the dedicated virtual setting and less distracted.

District officials say parents are now requesting teletherapy services for their children because they’ve seen such great progress.

Related: These parents want more virtual learning. New Jersey says they’re on their own

In addition to supporting students and school administrators, teletherapy serves the providers themselves. The model embraces working remotely from home, with flexible hours, including part-time.

Many of those drawn to teletherapy are working mothers seeking to reduce time outside the home and retirees who want to continue the work they love in a reduced capacity.

The thousands of clinicians who have embraced teletherapy find that when they remove themselves from day-to-day burdens inside the school building, they are better able to focus on their clinical work and target their students’ specific needs.

A hybrid staffing model alone isn’t a cure-all to address students’ increasing needs or to reverse widespread school staff shortages. But as schools search for solutions to address these issues, embracing a combination of in-person staff and remote specialists offers promise.

Kate Eberle Walker is CEO of Presence, the leading provider of teletherapy solutions for children with diverse needs.

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

The post OPINION: A solution exists to the growing shortage of special education providers 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.

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SEATTLE — Mireya Barrera didn’t want a fight.

For years, she sat through meetings with her son’s special education teachers, struggling to maintain a smile as she understood little of what they said. On the rare occasions when other teachers who spoke Barrera’s language, Spanish, were asked to help, the conversations still faltered because they weren’t trained interpreters.

But by the time her son, Ian, entered high school, Barrera decided to invite a bilingual volunteer from a local nonprofit to sit with her and to remind the school team of her rights.

“I wanted someone on my side,” Barrera, whose son has autism, said through an interpreter. “All this time, they weren’t making things easy for us. It’s caused a lot of tears.”

Regardless of what language parents speak at home, they have a civil right to receive important information from their child’s educators in a language they understand. For students with disabilities, federal law is even more clear: Schools “must take whatever action is necessary” — including arranging for interpretation and translation — so parents can meaningfully participate in their kid’s education. 

But schools throughout the country sometimes fail to provide those services.

Families who don’t speak English are forced to muddle through meetings about their children’s progress, unable to weigh in or ask educators how they can help. Cultural and linguistic differences can convince some parents not to question what’s happening at school — a power imbalance that, advocates say, means some children miss out on critical support. In a pinch, it’s not uncommon for schools to task bilingual students with providing interpretation for their families, placing them in the position of describing their own shortcomings to their parents and guardians.

“That’s totally inappropriate, in every possible way — and unrealistic,” said Diane Smith-Howard, senior staff attorney with the National Disability Rights Network. “If the child is not doing particularly well in an academic subject, why would you trust your teenager to tell you?”

“Parents for whom English might not be their primary language are often overwhelmed with information and unable to participate meaningfully in the process.”

Jinju Park, senior education ombuds, Washington State 

School districts blame a lack of resources. They say they don’t have the money to hire more interpreters or contract with language service agencies, and that even if they did, there aren’t enough qualified interpreters to do the job.

In Washington and a handful of other states, the issue has started to gain more attention. State lawmakers in Olympia earlier this year introduced bipartisan legislation to bolster federal civil rights in state code. Teachers unions in Seattle and Chicago recently bargained for — and won — interpretation services during special education meetings. And school districts face an escalating threat of parent lawsuits, or even federal investigation, if they don’t take language access seriously.

Still, efforts to expand language access in special education face an uphill battle, due to the small pool of trained interpreters, lack of enforcement at the state level and scant funding from Congress. (Despite promising in 1974 to cover nearly half the extra cost for schools to provide special education, the federal government has never done so.) Washington’s bipartisan bill to add more protections for families suddenly failed, after state lawmakers stripped it of key provisions and advocates pulled their support.

The special education system can be “incredibly difficult for everybody,” said Ramona Hattendorf, director of advocacy for the Arc of King County, which promotes disability rights. “Then everything is exacerbated when you bring language into the mix.”

Related: Special education’s hidden racial gap

Nationwide, roughly 1 in 10 students who qualify for special education also identify as English learners, according to federal education data, and that share is growing. About 791,000 English learners participated in special education in 2020, a jump of nearly 30 percent since 2012. In more than a dozen states, including Washington, the increase was even higher.

As their numbers grow, their parents’ frustration with language services is rising too.

During the 2021-22 school year, the Washington State education ombudsman received nearly 1,200 complaints from parents about schools. Their number one concern, across all racial and demographic groups, was access and inclusion in special education. Senior education ombuds Jinju Park estimates that between 50 and 70 percent of calls the agency receives are about special education — and 80 percent of those calls are from clients who need interpretation services.

While most states allow schools up to 60 days once a student is referred for special education services to determine if they qualify, Washington schools can take up to half a school year. And if a parent needs interpretation or translation, the wait can last even longer.

“Our current laws do not support full parent participation,” Park wrote to Washington state lawmakers in support of an early version of House Bill 1305, the proposal that ultimately failed. “Parents for whom English might not be their primary language,” she added, “are often overwhelmed with information and unable to participate meaningfully in the process.”

Barrera, whose son attended the Auburn School District, south of Seattle, said she often felt cut out of his learning.

In kindergarten, after his diagnosis for autism, Ian’s special education team concluded he needed a paraeducator assigned to him full time, Barrera said. She relied on Google Translate and other parents to help her compose emails asking why he didn’t receive that support until the third grade. Her requests for translated copies of legal documents largely went unanswered, she said — until a principal told her that the translation was too expensive.

When Ian entered high school, bullying and his safety became Barrera’s top concern. He once came home with a chunk of hair missing, she said. Despite repeated calls and emails to his teachers, Barrera said she never received an explanation.

Barrera said that when she asked to come to the school to observe, a teacher told her, “You don’t even speak English. What’s the point?’ ”

“That’s totally inappropriate, in every possible way – and unrealistic. If the child is not doing particularly well in an academic subject, why would you trust your teenager to tell you?”

Diane Smith-Howard, senior staff attorney with the National Disability Rights Network

Vicki Alonzo, a spokesperson for the Auburn district, said that the region’s booming immigrant population in recent years has prompted the district to commit more resources toward helping families whose first language isn’t English. Nearly a third of its students are multilingual learners, she said, and they speak about 85 different languages at home. 

In the 2019-20 year, the district spent about $175,000 on interpretation and translation services, she said; last school year, that figure was more than $450,000.

Alonzo noted the district received no additional funding for those services, which included about 1,500 meetings with interpreters and translation of more than 3,000 pages of documents.

“Families are our partners,” she said. “We need them to have student success.”

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

Lawmakers in other states have tried to address language access issues.

Proposed legislation in California would set a 30-day deadline for schools to comply with parents’ requests for a translated copy of their child’s individualized education program, or IEP, which details the services a school will provide for a student with disabilities. Similarly, lawmakers in Texas introduced a bill earlier this year to expand translation of IEPs if English is not the native language of the child’s parent (the bill died in committee).

“It’s a nationwide phenomenon,” said Smith-Howard of the National Disability Rights Network. “It’s a resource problem and also a matter of respect and dignity and understanding — that all parents should receive.”

In New York City, parents turned to the courts in pursuit of a solution.

Four families there filed a federal civil rights lawsuit in 2019, claiming the nation’s largest school district failed to provide translation services for families that don’t speak English. Like Barrera, one of the New York City parents asked for a Spanish interpreter at an IEP meeting; their school provided one who spoke Italian, according to M’Ral Broodie-Stewart, an attorney representing the families for Staten Island Legal Services.

In 2020, the U.S. Department of Justice launched an investigation into New Bedford Public Schools in Massachusetts after students and families who speak K’iché, an Indigenous Mayan language, complained about discriminatory practices. 

A settlement reached last year commits the Massachusetts district to using professionally trained interpreters — and not students, relatives or Google Translate — to communicate essential information to parents.

Related: Is the pandemic our chance to reimagine special education?

Teachers are frustrated too.

In Washington state’s largest school district, the Seattle teachers union picketed and delayed the start of school last year over demands that included interpretation and translation in special education. The eventual contract, which lasts through 2025, requires that staff have access to various services that provide telephonic (a live interpreter) or text-based translation (for written documents). The provision was to ensure that bilingual staff weren’t being asked to translate if it wasn’t a part of their job description.

Teachers say these tools have been helpful, but only to a degree: There are rarely telephone interpreters available for less common languages, such as Amharic, and technical issues like dropped calls are common. 

The availability of interpreters is “not as consistent as we would like it to be,” said Ibi Holiday, a special-education teacher at Rising Star Elementary School in Seattle.

There’s also an issue of context. Translators may not have a background in special education, so families may come away from a meeting not understanding all the options. This can slow down the process significantly. 

“For a lot of the families, they attended a school in their country that functions completely differently,” said Mari Rico, director of El Centro de la Raza’s Jose Marti Child Development Center, a bilingual early education program. “Translating wasn’t enough; I had to teach them about the system.”  

Many Seattle district schools have multilingual staff, but the number and diversity of languages spoken isn’t consistent, Rico said. And there is a greater risk of a student’s case getting overlooked or stagnating because of language barriers. She said she’s had to step in where families have gone months without an IEP meeting even as their child was receiving services.

Hattendorf, with the Arc of King County, said that cheaper tech solutions like those Seattle is using do offer some assistance, but their quality varies widely. And the services may not offer parents enough time to process complicated information and ask follow-up questions, she said.

South of Seattle, the Barreras decided to move Ian to a different high school.

He graduated earlier this year, but federal law guarantees his special education services for another three years. Ian is now attending a transition program for students with disabilities, where he will learn life skills like getting a job.

“We know, with help, he can do whatever he wants,” Barrera said. 

Already, she added, “it’s all different. The teachers just try to find the best way to communicate with me.”

This story about interpretation services was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education, in partnership with The Seattle Times.

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GRANTS PASS, Ore. (AP) – One Thursday morning in May, instead of sitting at a desk in her sixth-grade classroom in the Oregon mountains, Khloe Warne sat at a table in her mother’s bakery, doing her schoolwork on a laptop and watching her favorite clips of anime.

Khloe, 12, loves drawing, writing and especially reading — in second grade, she was already reading at a sixth-grade level. But she only goes to school one day a week for two hours. The district said she needed shorter school days last year when Khloe threw a desk and fought with students in outbursts her mother attributes to a failure to support her needs. Khloe, who has been diagnosed with autism, ADHD and an anxiety disorder, had no individualized education plan for her disability when she returned to in-person learning after the pandemic.

Not being able to attend school regularly has saddened Khloe, stunted her education and isolated her from her peers, her mother says. It has also upended her family’s life. Her mother, Alyssa Warne, had to quit her job for a time in order to stay home with her. She described the fight to get her daughter back in the classroom as exhausting, stressful and sad.

“She just wants a friend,” Alyssa Warne said. “It’s not asking much to send your kid to school for at least one whole day.”

Across the country, advocates say, schools are removing students with disabilities from the classroom, often in response to challenging behavior, by sending them home or cutting back on the days they’re allowed to attend. 

Schools say the move can be necessary to keep students and teachers safe and prevent disturbances. But parents and advocates argue the shortened days, often referred to as informal removals, amount to discrimination and violations of students’ civil rights. Under federal law, it is illegal to bar a child from receiving the same education as their peers based on conditions stemming from their disability.

Alyssa Warne sued her daughter’s school and school district this month, alleging disability discrimination. School officials did not respond to requests for comment on the lawsuit. In an earlier email, the school director said she couldn’t comment on individual students because of privacy concerns.

Related: Hidden expulsions? Schools kick students out but call it a ‘transfer’

In Oregon, a clash between parents and schools culminated this spring at the statehouse. A bill to curb the use of shortened days, essentially giving parents veto power over such a decision, is pending in the House of Representatives after near-unanimous passage in the Senate. Pressure from school boards and superintendents hurt the legislation’s chances, its chief sponsor said.

“It shouldn’t have been controversial, because these kids have had this right for such a long time,” Democratic state Sen. Sara Gelser Blouin said of her bill. “I wish that we could serve these kids, respect these kids and lift these kids up and honor their rights without being ordered by a court to do so.”

“We wasted a year with a child who could do grade-level work.”

Chelsea Rasmussen, parent of an 8-year-old in a Grants Pass, Oregon, school.

Dan Stewart, managing attorney for education and employment at the National Disability Rights Network, said he wasn’t aware of other states with laws limiting schools’ use of shortened days as Oregon’s bill would have. But a number of states have issued guidance through their departments of education informing schools that shortened days could potentially amount to discrimination under federal law.

Since the 1970s, federal law has guaranteed students with disabilities the right to a free and appropriate public education in the least restrictive environment. This means that, as much as possible, they should be learning alongside their peers who don’t have disabilities, with necessary accommodations. It’s illegal for school districts to cite a lack of money or staff as a reason for not educating a child with disabilities.

But states don’t always enforce the law, advocates say. Instead of hiring specialists, training teachers or providing tailored services, they say, some schools are shortening students’ schedules as a way to manage difficult behavior. 

Related: When your disability gets you sent home from school

Oregon is embroiled in a lawsuit over schools’ use of shortened school days, filed by the nonprofit advocacy group Disability Rights Oregon in 2019. Experts appointed by the court to research the issue found that about 1,000 Oregon students with disabilities — most of them in elementary school — are on shortened schedules.

“While less than 2 percent of students in special education are placed on a shortened school day, for those students and their families, this amounted to often a dramatic decrease in the amount of instruction received, a loss of opportunities for interaction with peers, and an educational program that put them in a position to lag further and further behind their peers in both academic and social emotional skills,” the experts’ report said.

This spring, in the debate over the bill, teachers unions said a lack of specialized training and a post-pandemic crisis in student mental health were putting them in harm’s way and disrupting classrooms.

“Education employees are reporting frequent injuries caused by students, and yet they are provided with limited training and scarce options to protect themselves from harm,” wrote Susan Allen of the Oregon School Employees Association.

But schools receive federal and state money for kids with disabilities that they should use for training and staffing, advocates say. 

“Resource allocation is a decision, and school districts have decided not to invest,” said Meghan Moyer, public policy director for the nonprofit advocacy organization Disability Rights Oregon.

“I wish that we could serve these kids, respect these kids and lift these kids up and honor their rights without being ordered by a court to do so.” 

Oregon State Sen. Sara Gelser Blouin

For some Oregon families, the bill’s stalling is only their latest setback.

Another parent in Grants Pass, Chelsea Rasmussen, has been fighting for more than a year for her 8-year-old daughter Scarlett to attend full days at school.

Scarlett reads at her grade level, but is nonverbal and uses an electronic device and online videos to communicate. She was born with a genetic condition that causes her to have seizures and makes it hard for her to eat and digest food. Because of her medical needs, the school must have a resident nurse on site.

After the pandemic, Scarlett’s mother agreed to start her on a three-day school week to ease her into in-person learning for the first time. But it took months of meetings to bump her up to five days a week, Chelsea Rasmussen said. School employees, she said, told her the district lacked the staff to tend to Scarlett’s medical and educational needs at school.

Officials at the school system attended by Scarlett, Grants Pass School District 7, said staffing was not a factor in her case.

“We try not to shorten days for students with special needs,” said Vanessa Jones, the district’s director of special services. “It’s a team decision and we use it as sparingly as we can.”

At home, Scarlett kept showing her mom online videos of children playing or Sesame Street lessons. She longed to be at school, her mother said.

“We wasted a year with a child who could do grade-level work,” Chelsea Rasmussen said. She plans to continue speaking out — both for Scarlett and other families struggling with the same issue.

“How can you not allow a child to have an education?” she said. “We don’t feel like we should have to fight that hard for a student to feel like they belong.”

Claire Rush is a corps member for the Associated Press/Report for America Statehouse News Initiative. Report for America is a nonprofit national service program that places journalists in local newsrooms to report on undercovered issues.

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BOSTON — After María Mejía’s son was diagnosed with autism spectrum disorder in preschool, the question of where he should go to kindergarten focused entirely on his special education needs.

Mejía and her husband, Spanish-speaking immigrants from the Dominican Republic, only later learned that Joangel, now 7, would have been an ideal candidate for one of the four elementary schools in Boston that teach students in both English and Spanish, Joangel’s first language. Experts say such programs offer English learners the best chance at academic success. BPS has pledged to start dozens more.

But kids like Joangel, who have individualized education plans, are often left out,their families unwittingly forced to place them into English-only special education programs to help meet their learning needs. Mejía said she was shocked when she learned there was an alternative.

“They didn’t tell me there was a bilingual school,” Mejía said in Spanish, “only a school that would take a child with an IEP.”

District enrollment data obtained by The Hechinger Report through a public records request shows students with disabilities — who make up 22 percent of the student population —are starkly underrepresented in the district’s seven dual-language programs. They make up between 8 and 14 percent of the enrollment in each of the district’s five Spanish-English programs. None are enrolled in the two-year-old Vietnamese-English program at Mather Elementary School. And in the district’s Haitian Creole-English program, so few students with disabilities are enrolled, the district can’t reveal the total without risking student privacy.

Related: Rising popularity of dual-language education could leave Latinos behind

Experts and advocates say the disparities stem partly from a staffing issue — there are simply not enough bilingual special education teachers — but are also the result of overt discrimination and cultural misconceptions about whether students with disabilities can handle bilingual education. The district has pledged to add 25 more bilingual programs in the next two years. But both advocates and state officials question whether BPS can move that quickly, and early signs suggest the district may struggle to include students with disabilities as it opens new programs: The bilingual program at Mather Elementary, now in its second year, will only be ready to serve students with disabilities in its fourth year, according to the principal.

BPS plays a large role in determining placement for English Learners, who make up nearly a third of the district, as well as students with disabilities. Families in Boston get to select their preferred schools, but if students need English language or special education services, their registrations are routed through the Newcomers Assessment and Counseling Center or the Special Education department. Language testers make school recommendations based on students’ English proficiency, and special education department staff identify specific schools for kids with IEPs.

BPS spokesman Max Baker said in a statement the district is “devoted to becoming a fully inclusive district, providing full access to a continuum of services to all students,” but declined to answer questions about the reasons students with disabilities might be underrepresented in the dual-language programs, or state what specific steps the district intends to take to remedy the lack of representation.

Bilingual special education experts say the underrepresentation of students with disabilities is more than a missed opportunity — it’s discrimination. They say there’s no reason schools can’t serve students with disabilities. And equal opportunity law suggests they have to.

“Kids with disabilities need dual-language education more than anyone else.”

Maria Serpa, BPS English Language Learner Task Force member

Maria Serpa, a pioneer in the field and a member of the district’s English Language Learner Task Force, said the enrollment data is shocking. “Kids with disabilities need dual-language education more than anyone else,” Serpa said.

BPS has long been criticized for failing its students with disabilities and those who don’t speak English fluently — only narrowly avoiding a state takeover last year in part by pledging to improve services to these two groups. A cornerstone of its plan is an ambitious expansion of dual-language programs.

These programs, which bring together students who are learning English and native English speakers in a joint quest to become academically proficient in both languages, are considered one of the only ways to close the achievement gap between the two groups. English learners who go through these programs outperform their English learner peers on reading and math tests and graduate at higher rates.

Why dual-language instruction works so well is multifaceted. Research has found it’s better for kids whose dominant language is Spanish, for example, to spend part of their day getting academic instruction in their native language. Researchers and educators also highlight the benefits to self-esteem and belonging when kids who are traditionally seen as lacking because of their language background get to be the “experts” in front of their peers. And as English-speaking families across the socioeconomic spectrum flock to these programs, dual-language education has also been heralded as a method of school integration.

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

Because students with disabilities and those dubbed English learners have among the lowest test scores and graduation rates in the district, advocates like Serpa believe they could benefit the most from a “gold standard” program.

Yet, so far, BPS has not followed that logic.

More than 14,600 BPS students are English learners. One in four has a disability. Yet just 6 percent of these students attend a dual-language school.

Dania Vázquez, headmaster of the Margarita Muñiz Academy dual-language high school, started her career in bilingual special education in the 1980s just as the twin specialties coalesced into a field. At her school, nearly 14 percent of students receive special education services, more than in Boston’s other dual-language programs, yet still below the district average.

She doesn’t know exactly why her school enrolls students with disabilities at higher rates than other dual language schools but noted the school coordinates its outreach to inform all families about its program.

“We are not choosing students,” Vázquez said. “Students are choosing us.”

At the Muñiz Academy, Vázquez said special education teachers spend time in classrooms supporting students with disabilities as they learn from core subject teachers.* The teachers also provide small group support in the school’s “resource room.”

“I don’t see the urgency for them to serve these kids.”

Suleika Soto, BPS mother and director of the Boston Education Justice Alliance

Historically, few English learners with disabilities in BPS have had access to both bilingual and special education.

“I don’t see the urgency for them to serve these kids,” said Suleika Soto, a BPS mother and director of the Boston Education Justice Alliance. Soto ranked two of the district’s dual-language programs at the top of her list of schools when she was registering her daughter for kindergarten but her child didn’t get into either program.

Soto enrolled in BPS after moving from the Dominican Republic when she was 7 and took bilingual classes until she became fluent in English. By the time she graduated, the state had banned bilingual education for immigrant students.

That ban, which lasted from 2002 to 2017, when the state Legislature offered districts renewed flexibility in language acquisition programs through the LOOK Act, continues to affect schools, both in staffing challenges and cultural perceptions around bilingual education.

Serpa said both English-speaking district administrators and non-English-speaking families need to be educated about the potential of dual-language programs.

“BPS has told a lot of families that the best thing for their kids is to learn only English,” Serpa said.

Related: How can being bilingual be an asset for white students and a deficit for immigrants?

Hai Son, principal of Mather Elementary School, sees the state ban’s continued impact on the teacher pipeline. A whole generation of bilingual students and young teachers who might have gone into bilingual education never did.

Students in Mather Elementary’s dual-language classrooms cannot receive special education services, according to Son, who said his team is already stretched thin creating a Vietnamese-language curriculum. Son said the district rushed the program’s opening last year, which pre-empted adequate planning time, leaving his team to design the program as they implement it.

Son said he expects to submit a plan for serving students with disabilities in his bilingual classrooms next year. If it is approved, the school could begin enrolling such students in 2024, he said.

How he will staff those classrooms, however, is an open question.

In a sweeping 2022 evaluation, the Council of Great City Schools, a coalition of the nation’s 78 largest school systems, criticized BPS for relying on teachers with multiple certifications to serve students with disabilities and those still learning English. While dual licensing technically complies with state and federal laws, critics say it stretches teacher capacity. In the district’s latest teacher contract, BPS committed to decreasing the practice.

Bilingual special education experts say the district can find more teachers by looking abroad or creating pipelines within the city’s immigrant communities.

Meanwhile, parents, teachers and community advocates report families are counseled to leave dual-language programs when it becomes clear their children need special education supports, or they’re told to enroll elsewhere from the start.

And mothers like Mejía see the high price of going down such a path. After Joangel entered elementary school and began spending the majority of his waking hours in an English-only classroom, Mejía said he quickly started losing his ability to communicate with his family in his native Spanish.

“There are parents paying so their children can learn another language,” Mejía said. Meanwhile, she is watching her son’s bilingualism slip away.

Although the district has pledged to open more bilingual programs, many remain skeptical. While the district plans to open 25 new bilingual programs by the end of the 2024-25 school year, it has yet to even announce when those programs will launch or where those programs will be located.*

Every year’s delay means a new class of kindergartners misses out on bilingual education, starting off their elementary school careers on a monolingual track. If the district cannot provide more dual-language programs and address why students with disabilities are underrepresented in those that are offered, families will continue to face frustration and regret.

Sonia Medina is the mother of two boys, 13-year-old Luis and 15-year-old Michael. Both have IEPs: Luis for ADD and Michael for ADHD and autism. When Medina, an immigrant from the Dominican Republic, was considering kindergartens, she wanted her eldest son to enter the dual-language program at the Hurley K-8 School but the district placed him in an English-only program elsewhere.

She wishes things had gone differently. Both children understand a decent amount of Spanish, but her younger son, in particular, speaks less fluently. In Santo Domingo, with family, language barriers prevent flowing conversations. And even when the boys can get their point across, Medina knows speaking is only part of the battle.

“It is one thing to speak [the language],” Medina said. “It’s another thing to write it, and another thing to read it.” In this aspect, Medina said her sons lost out. “The damage is done.”

* Clarification: This story was updated to clarify the nature of the Muñiz Academy’s services for kids with disabilities.

Correction: This article has been corrected to reflect the timing of when BPS will have 25 new bilingual programs in place.

This story about bilingual special education 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 Students with disabilities often left out of popular ‘dual-language’ programs appeared first on The Hechinger Report.

BOSTON, Mass.– Después de que el hijo de María Mejía fuera diagnosticado con un trastorno del espectro autista en el preescolar, el tema de a cuál kínder debería ir se centró completamente en sus necesidades de educación especial.

Mejía y su esposo, inmigrantes hispanohablantes de la República Dominicana, supieron más tarde que Joangel, quien ahora tiene 7 años, habría sido un candidato ideal para una de las cuatro escuelas primarias de Boston que enseñan a los estudiantes tanto en inglés como en español, el idioma materno de Joangel. Los expertos dicen que tales programas ofrecen a los estudiantes de inglés la mejor oportunidad de éxito académico y las Escuelas Públicas de Boston (BPS, por sus siglas en inglés) se han comprometido a comenzar unas docenas más.

Pero los niños como Joangel a menudo quedan fuera. Sus familias, sin saberlo, se ven obligadas a participar en programas de educación especial únicamente en inglés para recibir servicios de sus programas de educación individualizados (IEP, por sus siglas en inglés) que ayuden a satisfacer sus necesidades de aprendizaje. Mejía dijo que se sorprendió cuando supo que había una alternativa.

“No me dijeron que era una escuela bilingüe”, dijo Mejía, “simplemente una escuela que aceptaron a un niño que tiene IEP”.

Los datos de inscripción del distrito, obtenidos por The Hechinger Report a través de una solicitud de registros públicos, muestran que los estudiantes con discapacidades —que representan el 22 por ciento de la población — están claramente subrepresentados en los siete programas de lenguaje dual del distrito. Representan entre el 8 y el 14 por ciento de la inscripción en los cinco programas de español e inglés. Ninguno está inscrito en el programa vietnamita-inglés de dos años en la Escuela Primaria Mather. Y en el programa de creole haitiano-inglés, hay tan pocos estudiantes con discapacidades inscritos que el distrito no puede revelar el total sin poner en riesgo la privacidad de los estudiantes.

Los expertos y defensores dicen que las disparidades se deben en parte a un problema de personal — simplemente no hay suficientes maestros de educación especial bilingüe — pero también son el resultado de una discriminación abierta y de conceptos culturales erróneos sobre si los estudiantes con discapacidades pueden manejar la educación bilingüe. El distrito se ha comprometido a agregar 25 programas bilingües más en los próximos dos años. Pero tanto los defensores como los funcionarios estatales cuestionan si BPS puede avanzar tan rápido, y las primeras señales sugieren que el distrito puede tener dificultades para incluir a los estudiantes con discapacidades a medida que abre nuevos programas: el programa bilingüe en la escuela Mather, ahora en su segundo año, solo estará listo para atender a estudiantes con discapacidades en su cuarto año, según el director.

BPS juega un papel importante en la determinación de la ubicación de los estudiantes de inglés, que constituyen casi un tercio del distrito, así como de los estudiantes con discapacidades. Las familias en Boston seleccionan sus escuelas preferidas, pero si necesitan servicios de inglés o educación especial, sus inscripciones están mandados al Centro de Evaluación y Orientación para los Recién Llegados o el Departamento de Educación Especial. Asesores de lenguaje hace recomendaciones basadas en el dominio del inglés y personal del departamento de educación especial identifica escuelas específicas para niños con IEP.

El portavoz de BPS, Max Baker, dijo en un comunicado que el distrito está “dedicado a convertirse en uno totalmente inclusivo, brindando acceso completo a una serie de servicios para todos los estudiantes”, pero se negó a responder a preguntas sobre por qué los estudiantes con discapacidades están subrepresentados en los programas de lenguaje dual o qué va a hacer para cambiar eso.

Los expertos de educación especial bilingüe dicen que la subrepresentación de los estudiantes con discapacidades es más que una oportunidad perdida: es discriminación. Dicen que no hay razón para que las escuelas no puedan atender a estudiantes con discapacidades. Y la ley de igualdad de oportunidades sugiere que tienen que hacerlo.

María Serpa, una pionera en el campo y miembro de la Fuerza Especial para Aprendices de Inglés del distrito, dijo que los datos de inscripción son increíbles.

“Los niños con discapacidades necesitan educación bilingüe más que nadie”.

María Serpa, miembro de la Fuerza Especial para Aprendices de Inglés de BPS

“Los niños con discapacidades necesitan educación bilingüe más que nadie”, dijo Serpa en inglés.

BPS ha sido criticado durante mucho tiempo por reprobar a sus estudiantes con discapacidades y a aquellos que no dominan el inglés — evitando una toma de control del estado el año pasado en parte al comprometerse a mejorar los servicios para estos dos grupos. Una piedra angular de su plan es la ambiciosa expansión de los programas bilingües.

Los programas de “lenguaje dual”, cuyos se unen los aprendices de inglés y los hablantes nativos intentando dominar los dos idiomas a nivel académico, se consideran una de las únicas vías para cerrar la brecha de rendimiento entre los dos grupos. Aprendices de inglés que toman estas clases superan a sus compañeros que también están aprendiendo el inglés en las pruebas de lectura y matemáticas y a graduarse en tasas más altas.

Por qué funcionan tan bien se debe a varias razones. La investigación ha encontrado que es mejor para los niños cuyo idioma dominante es el español, por ejemplo, pasar parte del día recibiendo instrucción académica en su idioma nativo. Los investigadores y educadores también destacan los beneficios para la autoestima y la pertenencia cuando los niños que tradicionalmente se consideran deficientes debido a su origen lingüístico se convierten en “expertos” frente a sus pares. Y a medida que las familias de habla inglesa de todo el espectro socioeconómico acuden en masa a los programas de lenguaje dual, también han sido anunciados como un método de integración escolar.

Hasta ahora, BPS no ha seguido esa lógica.

Más de 14.600 estudiantes de BPS son aprendices de inglés. Uno de cada cuatro de ellos tiene una discapacidad. Sin embargo, solo el 6 por ciento de ellos asisten a una escuela bilingüe.

Dania Vázquez, directora de la Academia Margarita Muñiz, la comenzó su carrera en educación especial bilingüe en la década de 1980 justo cuando las especialidades se fusionaron en un solo campo. En su escuela, casi el 14 por ciento de los estudiantes reciben servicios de educación especial, más que en otros programas bilingües de Boston, pero todavía por debajo del promedio del distrito.

Vázquez dijo que no sabe exactamente por qué su escuela inscribe a estudiantes con discapacidades a tasas más altas, pero señaló que la escuela hace un esfuerzo coordinado para informar a todas las familias acerca de su programa.

“No estamos eligiendo estudiantes”, dijo en inglés. “Los estudiantes nos eligen a nosotros”.

En la Academia Muñiz, Vázquez contó que los maestros de educación especial pasan tiempo en los salones de clases apoyando a los estudiantes con discapacidades mientras estos aprenden de los maestros de las materias en español o inglés.* También brindan apoyo en grupos pequeños en la “sala de recursos” de la escuela.

Históricamente, pocos aprendices de inglés con discapacidades en BPS han tenido estas oportunidades.

“No veo en ellos la urgencia de servir a estos niños”.

Suleika Soto, una madre y organizadora con la Alianza de Justicia Educativa de Boston

“No veo en ellos la urgencia de servir a estos niños”, dijo Suleika Soto, una madre en BPS y organizadora con la Alianza de Justicia Educativa de Boston. Soto trató de que su hija ingresara a una escuela bilingüe pero la niña no estaba elegida para ninguno de los dos programas que clasificó en la parte superior de su lista.

Soto se mudó a Boston desde la República Dominicana cuando tenía 7 años y tomó clases bilingües hasta que aprendió inglés con fluidez. Cuando se graduó de la escuela secundaria, el estado había prohibido la educación bilingüe para estudiantes inmigrantes.

Esa prohibición, que duró de 2002 a 2017 — cuando la legislatura estatal ofreció a los distritos una flexibilidad renovada en los programas de adquisición de inglés a través de la Ley LOOK — continúa afectando a las escuelas, tanto en desafíos de dotación de personal como en las percepciones culturales en torno a la educación bilingüe.

María Serpa dijo que tanto los administradores distritales como las familias inmigrantes deben ser educados sobre el potencial de los programas bilingües.

“BPS les ha dicho a muchas familias que lo mejor para sus hijos es aprender solo inglés”, dijo Serpa en inglés.

Hai Son, director de la Escuela Primaria Mather, lamenta la interrupción en el flujo de educadores bilingües. Toda una generación de estudiantes bilingües y jóvenes maestros que podrían haber ingresado a la educación bilingüe nunca lo hicieron.

Los estudiantes en las aulas bilingües de Mather no pueden recibir servicios de educación especial, según Son, quien dijo que su equipo ya está al límite creando un plan de estudios en idioma vietnamita. Son dijo que el distrito apresuró la apertura del programa el año pasado, lo que anuló el tiempo de planificación adecuado, obligando a que su equipo tuviera que diseñar un programa a medida que lo implementaban.

Son dijo que espera presentar un plan para atender a estudiantes con discapacidades en sus aulas bilingües el próximo año. Si se aprueba, la escuela podría comenzar a inscribir a esos estudiantes en 2024, dijo.

Sin embargo, la forma en que dotará de personal a esas aulas es una pregunta abierta.

En una amplia evaluación de 2022, el Consejo de Escuelas de Grandes Ciudades, una coalición de los 78 sistemas escolares más grandes del país, criticó a BPS por depender de maestros con múltiples certificaciones para atender a estudiantes con discapacidades y aquellos que aún están aprendiendo inglés. Si bien la licencia dual técnicamente cumple con las leyes estatales y federales, los críticos dicen que fuerza la capacidad de los maestros. En el último contrato de maestros del distrito, se hizo el compromiso de reducir la práctica.

Los expertos de educación especial bilingüe dicen que el distrito puede buscar maestros de otros países o crear canales dentro de las comunidades de inmigrantes de la ciudad.

Mientras tanto, padres, maestros y defensores comunitarios dicen que se aconseja a las familias que abandonen los programas bilingües cuando queda claro que sus hijos necesitan apoyo de educación especial, o se les dice que se inscriban en otro lugar desde el principio.

En el caso de Mejía, después de que Joangel ingresó a la primaria y comenzó a pasar la mayor parte de su tiempo en un salón de clases en el que solo se hablaba inglés, rápidamente comenzó a perder la capacidad de comunicarse con su familia en su español nativo.

“Hay padres que pagan para que sus hijos aprendan otro idioma”, dijo Mejía. Mientras tanto, ella ve cómo se desvanece la oportunidad de su hijo de ser bilingüe.

Aunque el distrito se ha comprometido a abrir más programas bilingües, muchos siguen siendo escépticos. Si bien el distrito planea abrir 25 nuevos programas bilingües para fines del año escolar 2024-25, aún tiene que anunciar cuándo se lanzarán esos programas o dónde se ubicarán esos programas.*

Cada año de retraso significa que una nueva clase de niños de kínder se perderá la educación bilingüe, comenzando sus carreras en la escuela primaria en un entorno monolingüe. Sin más programas ni un cálculo de por qué los estudiantes con discapacidades están subrepresentados en los que existen, las familias seguirán enfrentándose a la frustración y al arrepentimiento.

Sonia Medina es madre de dos niños: Luis, de 13 años y Michael, de 15 años. Ambos tienen IEP: Luis para desorden de déficit de atención y Michael para el autismo y desorden hiperactivo y déficit de atención. Cuando Medina, una inmigrante de la República Dominicana, estaba escogiendo un kínder, quería que su hijo mayor ingresara al programa de lenguaje dual del Hurley, pero el distrito lo colocó en otra escuela sin la educación bilingüe.

Ella desearía que las cosas hubieran sido de otra manera. Ambos niños entienden bien el español, pero su hijo menor, en particular, habla con menos fluidez. En Santo Domingo, en familia, las barreras del idioma impiden que las conversaciones fluyan. Incluso cuando pueden expresar su punto de vista, Medina sabe que hablar es solo una parte de conocer un idioma.

“Una cosa es tu hablarlo”, dijo Medina. “Otra cosa escribirlo, y otra cosa es leerlo”. En ese aspecto, Medina dijo que sus hijos se han perdido. “El daño está hecho”.

*Aclaración: Este artículo se actualizó para aclarar como funcionan los servicios de educación especial en la Academia Muñiz.

Este artículo ha sido corregida para reflejar el momento en que BPS tendrá 25 nuevos programas bilingües en funcionamiento.

Este artículo acerca de la educación especial bilingüe fue producido por The Hechinger Report, una organización de noticias independiente sin fines de lucro enfocada en la desigualdad y la innovación en la educación. Lee sus artículos en español.

The post Estudiantes con discapacidades a menudo son excluidos de populares programas de ‘lenguaje dual’ appeared first on The Hechinger Report.

Bobbi Linskens’ daughter was 6 months old when she was diagnosed with a brain injury associated with learning disabilities and developmental delays. Soon, other diagnoses followed for the infant, who had been born 5 weeks premature, including cortical visual impairment, which affects the brain’s ability to process visuals and, later, autism.

Linskens, who lives in Pennsylvania, had worked in child care settings and had little faith that a typical program would be able to care for her daughter. When she toured a preschool program and asked how they would adapt their program for her daughter, who needed uncluttered spaces and high-contrast materials to see better, Linskens wasn’t satisfied with the answers. “I’ve never felt comfortable with the options that were available,” Linskens said.

Instead, Linskens juggled a full-time job while also caring for her daughter, bringing her along to meetings and work trips, and relying on television to keep her occupied. But that took a toll. “I was constantly feeling guilty because having her sit in front of a TV,” Linskens said. “I’m working and not feeling like I’m giving either job the attention that it deserves. It was a struggle.”

Over the past few years, the pandemic has illuminated the fragility of the child care industry and the massive challenges parents have finding child care, a reality that has only become worse with major staffing shortages and pandemic-related center closures. But for parents of children with disabilities, child care shortages have always been a reality. In many cases, parents like Linskens can’t find programs that offer the support their children need — many parents report being turned away from child care programs once program officials learn that their child has a disability.

Since fears about the pandemic have dissipated, these child care challenges have only worsened for parents of children with disabilities , experts say, as child care centers reach the end of pandemic-related relief funds and struggle to find staff.

“The amount of care available has diminished,” said Nina Perez, early childhood national campaign director at MomsRising, an advocacy group focused on issues relating to moms, women and families. “If you’re operating on the margins, it’s incredibly difficult to be inclusive without an infusion of public funds or without charging [more],” she said. “It’s less likely you’ll have services for those kiddos.”

Families of kids with disabilities who do find slots often find their children expelled or “counseled out” of school if they are deemed too disruptive — one out of six autistic children are expelled from preschool of childcare, according to a recent study published by the Exceptional Children research journal.

“Most parents bounce around from preschool to preschool hoping that they don’t get thrown out,” said Lina Acosta Sandaal, a Florida-based psychotherapist who works with parents in need of one-on-one or group parenting support. “What happens when [a child] get thrown out of that preschool is now we can’t practice what we need to practice so they’re ready for kindergarten,” she added. Kids “get labeled and that label stays with them.”

This reality has consequences for parents as well. Caregivers of children with disabilities are less likely to be employed, are more likely to turn down promotions and lose an average of $18,000 per year due to scaling back work hours or leaving jobs because they can’t find child care.

In Chicago, Danielle Jordan, director of Educare Chicago, said she often gets calls from families who have been “counseled out of other child care,” due to their children’s disabilities, even though the Americans with Disabilities Act stipulates that children with disabilities should never be turned away from most public or private child care programs because of their  disability or the assistance they may need.

Educare Chicago, which is overseen by the nonprofit Start Early and runs several Early Head Start and Head Start classrooms on the city’s South Side, prioritizes inclusive education. More than 20 percent of children in its program have disabilities. The program has “inclusion aides” working in classrooms as well as a disability supervisor dedicated to making sure children with disabilities receive necessary therapies and support. But Educare has also been affected by staffing shortages, which have been especially pronounced for special education positions, including the aides who work one-on-one with children.

“They are the lowest paid teachers, and provide one-on-one around the clock supervision and care, which is definitely needed,” Jordan said. During the pandemic, Educare’s developmental play therapist left to start a private practice, an added blow to the program. Without enough staff available to help them, many children with disabilities are now languishing on a wait list. “We don’t have the support staff to make sure this is the best environment for them,” Jordan said.

If parents can’t find a child care center that will enroll their child with a disability, there are often few options. Under federal law, states are required to offer services like speech and occupational therapy to qualifying infants, toddlers and preschoolers, and some states go further and offer public preschool programs specifically for children with disabilities. Federally-funded Head Start and Early Head Start programs are required to fill at least 10 percent of their spots with children with disabilities, but nationwide, access varies and the program only enrolls a small percentage of eligible children. Some private programs specifically prioritize serving children with disabilities in an inclusive setting, but with limited spots, wait lists can be lengthy. Other options, like hiring a nanny, can cost an average of nearly $700 for a 40-hour week.

Part of the problem is that infants and toddlers with disabilities are not entitled to care and education like older children, said Perez of MomsRising. “It’s not perfect in the public school system, but we do know that children have federally protected rights,” she said. Greater federal investment in the nation’s child care system could help, she added. Last month, President Joseph Biden signed an executive order aimed at supporting the child care workforce and increasing access to affordable, high-quality care, including for children with disabilities, but it will likely take time for the directives to achieve results.

For Linskens, some relief came last year when her now 4-year-old was accepted into a preschool program for students with disabilities — a program the state covers under its early intervention program. But the program, which offers occupational, physical and speech therapy, is more than an hour’s drive away from Linskens’ home. For several months, Linskens drove her daughter to and from school until she was able to find a transportation company, also paid for by the state, to help. Since enrolling, her daughter has flourished, Linskens said. The child’s sleep has improved now that she is “engaged in something all day.” She used to cry when approached by other children, but now she is more comfortable and even seeks out interaction with friends, Linskens said. She’s also become more proficient with a device she uses to communicate and asserts her wants and needs.

Still, said Linsken, families like hers “just need more programs with more professionals for kids with special needs.” While she could have enrolled her daughter in other child care programs, with fewer supports for children with disabilities, she knows it wouldn’t have been the best option. “She would just get lost, she would go along with the flow, but she wouldn’t be getting what she needs.”

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

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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.

The post Los bebés y niños pequeños afroamericanos y latinos a menudo pierden las terapias tempranas que necesitan appeared first on The Hechinger Report.