Policy Approaches To Improving Coverage Of Dyslexia Screening, Testing And Treatment

Executive Summary

Dyslexia is a neurobiological disorder affecting up to one in five children, including over 80% of those with learning disabilities.¹ Despite its widespread prevalence, many children are not properly screened or tested and often miss out on evidence-based interventions to address the associated challenges. For those that do receive a proper and timely diagnosis, treatment options are often difficult to navigate, unaffordable, and out of reach, leading to poor educational outcomes and increased likelihood of unemployment and criminal justice involvement.² In California alone, the estimated societal cost of dyslexia was estimated to be $12 billion in 2020 and $1 trillion over the next 60 years.³

Immediate action is required to ensure that children with dyslexia receive the comprehensive services and supports they need. Dyslexia must be recognized as a medical condition, with screening, testing, and treatment fully integrated into our health care system and covered by public and private health insurance, rather than being limited to the domain of educational and self-pay services.

To address resource gaps and improve access to dyslexia screening, testing, and treatment services ("dyslexia services"), advocates should collaborate with relevant stakeholders to:

1. Increase Public Awareness. Educate communities and policymakers about the prevalence and impact of dyslexia, including the benefits of early diagnosis and intervention.
2. Update Diagnosis Codes. Advocate for the modernization of ICD-10-CM diagnosis codes for dyslexia to align with current scientific understanding.
3. Push for USPSTF Recommendations. Advocate for the United States Preventive Services Task Force (USPSTF) to assess the evidence and develop recommendations for early childhood dyslexia screening during primary care visits.
4. Seek CMS Clarification. Engage with the Centers for Medicare and Medicaid Services (CMS) to clarify guidelines on Medicaid coverage for dyslexia services, including under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit.
5. Advocate for State Coverage Mandates. Engage in targeted state advocacy to expand requirements for insurance coverage of dyslexia services.

These actions will help ensure that children with dyslexia receive the care and resources essential to their success, benefiting not only children and their families, but society as a whole.

Objective

This white paper explores opportunities to improve insurance coverage of dyslexia screening, testing and treatment services ("dyslexia services"). We begin by defining dyslexia and outlining the fragmented patient journey across educational and self-pay services, highlighting the associated human and economic toll. Next, we assess the current statutory and regulatory landscape regarding dyslexia coverage at both federal and state levels, including under public insurance, private insurance, and self-pay options. We also profile recent efforts to adopt coverage mandates, including New York's S5481. Finally, we offer actionable recommendations to improve coverage of essential dyslexia services and identify potential collaborators for future advocacy efforts.

Background

What is Dyslexia?

Dyslexia is defined as "an unexpected difficulty in reading for an individual who has the intelligence to be a much better reader, most commonly caused by a difficulty in the phonological processing (the appreciation of the individual sounds of spoken language), which affects the ability of an individual to speak, read, and spell."^4,5 Similar to other neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD) and autism, dyslexia is neurobiological in origin, characterized by distinct neural signatures that reflect difficulties in phonological and orthographic processing.⁶ Children with dyslexia generally have decreased brain activation and less gray matter in certain brain regions associated with reading skills.⁷ As a result of these functional and structural differences, dyslexia can lead to poor academic performance, diminished self-esteem and a lack of motivation.⁸ Dyslexia affects upwards of 20% of the population and 80–90% of those with learning disabilities.⁹ Its occurrence spans across gender, socioeconomic status, and racial groups, showing similar rates in diverse backgrounds.¹⁰

Signs and Symptoms

Dyslexia manifests a wide range of characteristics in those it affects, with these challenges evolving from childhood to adulthood. In early childhood, children with dyslexia often struggle with foundational reading skills, including phonological awareness, letter identification, letter-sound knowledge and rapid naming.¹¹ Among the pre-literate population, this translates into challenges with language acquisition, letter-sound recognition, color and number identification, handwriting, fine motor skills, and sight word recognition.¹² As these children mature, they may continue to face challenges in language organization, memorization, spelling, and persistent difficulties in reading, writing and motor skills (dyspraxia), and mathematics (dyscalculia), along with executive function issues, and memory problems.¹³ These patterns have been validated across languages.¹⁴

Some dyslexic learners may exhibit strengths in cognitive and socioemotional tasks, which can sometimes result in misdiagnosis or underdiagnosis of dyslexia. These individuals may excel in verbal reasoning, working memory, and language-related tasks, despite encountering difficulties in phonological awareness, rapid naming tasks, and other literacy issues.

In addition to learning challenges, children with dyslexia frequently report mental health problems as co-morbidities. Dyslexia is associated with higher rates of depression, anxiety, sleep disturbances, and social withdrawal.^15,16,17 Furthermore, between 15–40% of children with dyslexia may also have ADHD.^18,19

The following characteristics are associated with dyslexia:

1. Difficulty with the development of phonological awareness and phonological processing skills
2. Difficulty accurately decoding nonsense or unfamiliar words
3. Difficulty reading simple words in isolation
4. Inaccurate and labored oral reading
5. Lack of reading fluency
6. Various degrees of learning the names of letters and their associated sounds
7. Difficulty with learning to spell
8. Difficulty in word finding and rapid naming
9. Variable difficulty with aspects of written composition
10. Variable degrees of difficulty with reading comprehension

Current Patient Journey and Challenges

Screening, Testing and Diagnosis

Identifying and intervening for dyslexia as early as possible is critical for effective remediation.²⁰ Prevention and early phonological awareness intervention programs targeted at children in kindergarten through 2nd grade can significantly enhance reading skills, elevating many struggling readers to average reading levels.²¹ Research indicates that effective early intervention can dramatically reduce the expected incidence of reading disabilities—defined as reading below grade level—from 12–18% down to just 2–6%.²² Another study found that 90% of children with reading difficulties will achieve grade level in reading if they receive help in the 1st grade.²³ Conversely, children identified as reading disabled after 2nd grade often struggle to catch up to their peers; 75% of children whose help is delayed to age nine or later continue to struggle throughout their school career.^24,25

Although numerous screening tools exist for dyslexia, many children do not receive adequate assessments. Federal law mandates that schools identify and evaluate children with learning disabilities, leading to the traditional view that dyslexia screenings fall under the educational system's purview.²⁶ Educators are expected to look for indicators of phonological difficulties through a child's history, observations and specific tests.²⁷ However, formal screenings are frequently overlooked and lack the necessary quality due to insufficient training and resources.²⁸ Additionally, educators may hesitate to make a formal medical diagnosis of dyslexia, complicating the identification process.^29,30,31,32

Comprehensive neuropsychological evaluations conducted by trained physicians are considered the gold standard for assessing learning disabilities, including the diagnosis of dyslexia.³³ Neuropsychologists utilize a multifaceted approach to evaluate children, employing advanced imaging techniques to assess altered brain function or development, analyzing medical and educational histories, and conducting various assessments to arrive at a thorough diagnosis. These comprehensive evaluations not only pinpoint indicators of dyslexia but also uncover any attentional or emotional issues that may contribute to or arise from learning difficulties. Moreover, they play a crucial role in identifying the most effective evidence-based interventions and accommodations tailored to address each child's unique learning challenges.

While neurophysiological evaluations for dyslexia can be effective, they are often prohibitively expensive, rarely covered by health insurance, and not included in standard well-child visits, creating significant barriers to access. As explained in further detail below, private health plans generally do not recognize dyslexia and other learning disabilities as medical conditions, meaning they do not consider neurophysiological evaluations for dyslexia as necessary medical treatment.^34,35 CMS has also not issued policy guidance related to coverage of dyslexia screening under state Medicaid programs.³⁶ As a result of these policies—or lack thereof—the substantial costs associated with neurophysiological evaluations render them unaffordable for many families, severely limiting access to essential dyslexia screening and intervention.

Treatment

Once diagnosed, children with dyslexia should receive appropriate treatments using educational tools to enhance the ability to read. Specially trained learning disability educators develop and implement intervention plans for children with dyslexia. Educational interventions typically emphasize structured literacy, which teaches word-identification and decoding strategies in a systematic and explicit manner. Structured literacy approaches include the following core elements: phonology (sound structure of spoken words), sound-symbol association, syllables, morphology, syntax and semantics.³⁷ Evidence strongly suggests that structured literacy programs can improve reading skills among children with dyslexia.³⁸

Teachers need to be trained on structured literacy and the instructional strategies essential to success for these students. Unfortunately, access to structured literacy programs is relatively poor, particularly among public institutions, where 60% of elementary school teachers have not received training to teach these foundational reading skills.³⁹ Only 5,000 professionals are certified to provide structured literacy instruction, and most are only available through private institutions, which can often be unaffordable for many families.^40,41,42

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Footnotes

1. Sally E. Shaywitz, Jonathan E. Shaywitz, Bennett A. Shaywitz. Dyslexia in the 21st century (March 2021). https://doi.org/10.1097/ YCO.0000000000000670.

2. Boston Consulting Group. The Economic Impact of Dyslexia on California (July 2020). https://media-publications.bcg.com/TheEconomic-Impact-of-Dyslexia-on-California-Whitepaper-Final.pdf.

3. Id.

4. U.S. Public Law 115–391 (available at https://www.congress.gov/115/plaws/publ391/PLAW-115publ391.pdf).

5. There are two forms of dyslexia: developmental and acquired. This white paper focuses on developmental dyslexia, often apparent in early childhood and tied to brain neurodevelopment, rather than acquired dyslexia, which is often caused by traumatic brain injury or illness.

6. Jean-François Démonet, Margot J Taylor, Yves Chaix. Developmental dyslexia (May 1, 2004), https://doi.org/10.1016/s0140- 6736(04)16106-0.

7. Devin M. Kearns, Roeland Hancock, Fumiko Hoeft, Kenneth R. Pugh, Stephen J. Frost. The Neurobiology of Dyslexia (January 11, 2019), https://doi.org/10.1177/0040059918820051.

8. Elizabeth S. Norton, Sara D. Beach, John D.E. Gabrieli. Neurobiology of dyslexia (October 4, 2014), https://doi.org/10.1016/j. conb.2014.09.007.

9. Sally E. Shaywitz, Jonathan E. Shaywitz, Bennett A. Shaywitz. Dyslexia in the 21st century (March 2021). https://doi.org/10.1097/ YCO.0000000000000670.

10. Boston Consulting Group. The Economic Impact of Dyslexia on California (July 2020). https://media-publications.bcg.com/TheEconomic-Impact-of-Dyslexia-on-California-Whitepaper-Final.pdf.

11. Id.

12. Id.

13. Jane Roitsch, Silvana Watson. An Overview of Dyslexia: Definition, Characteristics, Assessment, Identification, and Intervention (July 19, 2019). https://doi.org/10.11648/j.sjedu.20190704.11.

14. Ibid.

15. George K. Georgiou, Rauno Parrila, Genevieve McArthur. Dyslexia and mental health problems: introduction to the special issue (January 29, 2024). https://doi.org/10.1007/s11881-024-00300-3.

16. Robert L. Hendren, Stephanie L. Haft, Jessica M. Black, Nancy Cushen White, Fumiko Hoeft. Recognizing Psychiatric Comorbidity With Reading Disorders (March 26, 2018). https://doi.org/10.3389/fpsyt.2018.00101.

17. Joseph Sanfilippo, Molly Ness, Yaacov Petscher, Leonard Rappaport, Barry Zuckerman, Nadine Gaab. Reintroducing Dyslexia: Early Identification and Implications for Pediatric Practice (July 1, 2020). https://doi.org/10.1542/peds.2019-3046.

18. Eva Germanò, Antonella Gagliano, Paolo Curatolo. Comorbidity of ADHD and Dyslexia (August 16, 2010). https://doi.org/10.1080/875 65641.2010.494748.

19. Aoife Lonergan, Caoilainn Doyle, Clare Cassidy, Shane MacSweeney Mahon, Richard A.P. Roche, Lorraine Boran, Jessica Bramham. A meta-analysis of executive functioning in dyslexia with consideration of the impact of comorbid ADHD (October 3, 2019). https://doi.or g/10.1080/20445911.2019.1669609.

20. Joseph Sanfilippo, Molly Ness, Yaacov Petscher, Leonard Rappaport, Barry Zuckerman, Nadine Gaab. Reintroducing Dyslexia: Early Identification and Implications for Pediatric Practice (July 1, 2020).

21. American Academy of Pediatrics. Learning Disabilities, Dyslexia, and Vision (March 1, 2011). https://publications.aap.org/pediatrics/ article/127/3/e818/64947/Learning-Disabilities-Dyslexia-and-Vision.

22. Joseph K. Torgesen. Avoiding the Devastating Downward Spiral (Fall 2004). https://www.aft.org/ae/fall2004/torgesen.

23. Frank R. Vellutino, Donna. M. Scanlon, Edward R.Sipay, Shelia G. Small, Alice Pratt, RuSan Chen, Martha B. Denckla. Cognitive profiles of difficult-to-remediate and readily remediated poor readers: Early intervention as a vehicle for distinguishing between cognitive and experiential deficits as basic causes of specific reading disability (1996). https://doi.org/10.1037/0022-0663.88.4.601.

24. Thomas B. Fordham Foundation and Progressive Policy Institute. Rethinking Special Education for a New Century (May 2001). https://fordhaminstitute.org/national/research/rethinking-special-education-new-century.

25. Frank R. Vellutino, Donna. M. Scanlon, Edward R.Sipay, Shelia G. Small, Alice Pratt, RuSan Chen, Martha B. Denckla. Cognitive profiles of difficult-to-remediate and readily remediated poor readers: Early intervention as a vehicle for distinguishing between cognitive and experiential deficits as basic causes of specific reading disability (1996). https://doi.org/10.1037/0022-0663.88.4.601.

26. Individuals with Disabilities Education Improvement Act of 2004., Pub. L. No. 108-446.

27. Dyslexia is not diagnosed with testing in the areas of vision, sensory-motor skill, or auditory processing, and is not determined solely by medical screening or psychological/IQ testing alone.

28. Maria Cunningham. Barriers to the Diagnosis of Dyslexia in Children (2021). https://elischolar.library.yale.edu/yurj/vol2/iss1/15.

29. Providers use the "specific learning disorder" definition from the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), to diagnose individuals with dyslexia. See University of Florida Literacy Institute, Definitions of Dyslexia (2019). https://ceedar.education.ufl.edu/wp-content/uploads/2022/07/Definitions-of-Dyslexia.pdf.

30. American Academy of Pediatrics. Learning Disabilities, Dyslexia, and Vision (March 1, 2011).

31. Rouzana Komesidou, Melissa J. Feller, Julie A. Wolter, Jessie Ricketts, Mary G. Rasner, Coille A. Putman, Tiffany P. Hogan. Educators' perceptions of barriers and facilitators to the implementation of screeners for developmental language disorder and dyslexia (January 23, 2022). https://doi.org/10.1111/1467-9817.12381.

32. Jo Worthy, Samuel DeJulio, Natalie Svrcek, Doris Ann Villarreal, Christine Derbyshire, Kira LeeKeenan, Molly Trinh Wiebe, Catherine Lammert, Jessica Cira Rubin, Cori Salmerón. Teachers' Understandings, Perspectives, and Experiences of Dyslexia (August 5, 2016). https://doi.org/10.1177/2381336916661529.

33. American Academy of Pediatrics. Learning Disabilities, Dyslexia, and Vision (March 1, 2011).

34. Blue Cross and Blue Shield Plans, Memorandum in Opposition of A2898A (May 21, 2023). https://nysblues.org/wp-content/ uploads/2023/07/MIO-A.2898A-Carroll-Dyslexia-Testing.pdf.

35. New York Health Plan Association, Memorandum in Opposition of S.5481/A.2898.A (May 20, 2024).

36. Based on Manatt analysis.

37. International Dyslexia Association. Structured Literacy: Effective Instruction for Students with Dyslexia and Related Reading Difficulties (2020). https://dyslexiaida.org/structured-literacy-effective-instruction-for-students-with-dyslexia-and-related-readingdifficulties/.

38. Karen A. Fallon, Lauren A. Katz. Structured Literacy Intervention for Students With Dyslexia: Focus on Growing Morphological Skills (April 7, 2020). https://doi.org/10.1044/2019_LSHSS-19-00019.

39. Institute for Multi-Sensory Education. Understanding the Key Components of Structured Literacy (August 2, 2024). https://journal. imse.com/key-components-of-structured-literacy/.

40. The Academic Language Therapy Association. About (2024). https://www.altaread.org/about/what-is-alta/.

41. Emily Hanford. Hard to Read: How American schools fail kids with dyslexia (September 11, 2017). https://www.apmreports.org/ episode/2017/09/11/hard-to-read.

42. Brian Gordon. Millions of students have dyslexia. Can all receive the specialized instruction they need? (October 14, 2019). https:// www.citizen-times.com/story/news/local/2019/10/14/dyslexia-awareness-grows-but-lesson-expensive-and-lack-teachers/3909822002/.

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