Parents and Physicians Working Together

From annual school check-ups to coughs and fevers, scraped knees, mysterious rashes, swollen glands and a host of other common (and not-so-common) symptoms, physicians and parents are partners in providing the best medical care possible to children and adolescents. Together with parents, medical providers are in the unique position of interacting with children throughout their school years, watching them grow not only physically but also in terms of their language, social-emotional and academic development. This perspective makes them ideal partners for both identifying potential learning problems and helping parents make wise decisions about the kinds of help that, if provided early and with precision, could truly be "prescriptions for success."

The article below, written for physicians (shhh! you can read it too!) was published in the October 2004 Journal of Child Neurology. It spells out some of the ways that medical professionals can play active roles in helping parents and school personnel address problems with learning and attention in school age children. We encourage you to share this article with your pediatrician.

From Research-to-Policy-to-Practice: A Prescription for Success for Students with Learning Disabilities

In a perfect world, the challenge of teaching would be a simple, straightforward endeavor. Healthy children would cross over the threshold of well-appointed and esthetically pleasant school buildings, having just enjoyed a well-balanced breakfast at their kitchen tables, and be greeted by enthusiastic building administrators and well-prepared teachers. Classroom instruction would reflect current research-based practices, and homework and assessments would be personalized to each individual child. Grade promotion would always be grounded in successful mastery of theory and content in subject areas, and students would progress seamlessly through the elementary, middle and high school grades, perfectly positioned to transition to post-secondary academic or pre-vocational settings or to gainful employment. Parents, teachers and school counselors and administrators would maintain open lines of communications, offering complimentary feedback and relying upon each other for honest and timely dialogue about questions and concerns.

In reality, and for segments of the student population, certain aspects of this fairy tale trajectory may hold true. However, for substantial numbers of others, including many with specific learning disabilities, the path from preschool to gainful employment is fraught with frustration and failure. Special education students, of whom students with learning disabilities comprise more than half the total number, fare far worse than those without these intrinsic challenges, and even with learning and behavioral support and intervention programs in place, current kindergarten through grade 12 school systems deposit almost 15% of our nation's school-age youth at the brink of adulthood ill-prepared to become independent and contributing members of society, and worse, unable to realize their full potential.

There is, however, good reason for optimism. Substantial policy efforts are underway to influence the reauthorization of the Individuals with Disabilities Education Act to incorporate major improvements that reframe key issues, such as what constitutes "adequate yearly progress," who is a "qualified teacher," what is meant by "research-based practice," and whether a "response to intervention" approach to early identification and treatment of learning disabilities is a viable alternative to current discrepancy approaches to assessment and classification. These major improvements to current policy have enormous implications for practice, and changes currently being considered in Congressional committee have the potential to reverse decades of unproductive mandates and prevent struggling students from having to endure failure before undergoing evaluation, being tracked into low-performing academic tracks instead of providing meaningful individualized and targeted instruction, and overlooking their unique social and informational needs and those of their families.

There has always been a certain tension between the world of education and other endeavors, perhaps owing to the presumption that there was little real science underlying educational practice and that, for example, engineering, medicine, and even the performing and fine arts held to a certain level of precision, discipline and professionalism that differentiated them from teaching. The notion of teacher as "expert" is not nearly as pervasive as that of physician, architect or musician, and the status of teachers in the eyes of the public has unfortunately suffered greatly as a result of highly politicized reports of poor learning outcomes for so many students with and without disabilities.

Medical practitioners have long enjoyed almost unconditional access to (and respect within) the education community, and increasingly large investments in neuroimaging and intervention studies, genetics and functional mapping of brain development and function, have begun to pay dividends in building a knowledge base from which early care providers and educators can make curricular decisions and tailor experiences and instruction to children at risk for learning failure. Physicians and medical researchers are being called on with increasing frequency to help problem-solve appropriate educational responses to clinical manifestation of specific learning disabilities and co-occurring disorders of language, behavior and attention in individual children, as well as to participate as members of school-based committees on special education and as a provider of ongoing professional development for staff.

As a community, physicians with expertise in child development and an appreciation of school-related challenges are uniquely positioned to contribute to the school success of children with learning disabilities. Here are some specific examples:

• Help dispel the stubborn mythology that surrounds specific learning disabilities.

  This is especially pertinent with regard to the area of reading (dyslexia). For example, there is still a popular faulty perception that individuals with dyslexia "see" letters upside down and that dyslexia is a single problem (ie, trouble "sounding-out words") rather than a diagnosis that encompasses such features as decoding speed and accuracy, vocabulary, comprehension, spelling and written expression.
  
  

• Convey the message that "learning disabilities are real."

  Parents and educators should be reminded that the science and underlying etiology of this disorder are far from complete, and there is only of late an emerging precision (and even consensus) about best treatment and intervention practices. There needs to be explicit reference to learning disabilities as lifelong, and reference should be made to how learning disabilities can impact an individuals' ability to function at different times across the life span. Also important is to articulate the notion that the impact of learning disabilities is not limited to any one skill area (i.e., reading, math, listening) and that learning disabilities do not result from educational impoverishment or from physical, sensory or motor impairments; that they are as likely to appear in boys as in girls; and that they do not result from lack of motivation or effort on the part of the individual.
  
  

• Guide parents and educators to better understand the similarities and differences between different classes of disorders.

  Although disorders of learning, attention, mood and anxiety often have overlapping characteristics and co-occur with some frequency, each has recommended treatment approaches, and each demands unique evaluation protocols to determine efficacy and monitor successful outcomes. This is particularly important with regard to comorbid learning disabilities and Attention-Deficit Hyperactivity Disorder (AD/HD), about which there is confusion and misunderstanding of how different pharmacological protocols are often used, and what impact they have on a student's improved availability to benefit from effective instruction.
  
  

• Communicate with parents and others that there is no "cure" for learning disabilities.

  Although pharmacologic intervention has been proven effective to address features of some disorders that fall along the developmental spectrum (and, indeed, individuals with comorbid learning disabilities and AD/HD are well known to have been shown marked benefit from psychostimulants and other pharmacologic agents), effective treatment approaches for specific learning disabilities alone rarely involve medicine, diet or other non-behavioral approaches. It should be reassuring to parents and educators that best practice dictates a well-targeted and intensive program of instruction and support for these individuals, coupled with careful and ongoing observation and progress monitoring. Just as physicians require feedback from patients and care providers during a medication trial, so, too, should parents and educators commit to evaluating progress during periods of focused instruction, documenting the child's response to intervention and making needed adjustments.
  
  

• Assist parents and educators to demand accountability from each other and from the systems within they operate.

  Educators should be encouraged to facilitate early screening efforts that ensure that students do not have to wait to fail before being identified as "at risk" of learning failure and thereby deemed eligible for referral for special education evaluation. Parents should be empowered to be proactive in sharing concerns with school personnel and with medical providers. They should be apprised of their due process rights so that they can be effective advocates for their child and be prepared to work with school personnel to either circumvent the needs for special education referral or participate in pre-referral activities that clarify the nature of a student's difficulties and lead to consensus about how best to address learning problems early and with robust and effective strategies.
  
  

• Remind parents and educators to consider the multidimensional nature of learning disabilities.

  In the words of an adolescent patient of mine, "Learning disability is what I have, not who I am." It is essential that those providing any type and level of care acknowledge the importance of addressing the medical, behavioral and social and emotional needs of these children in addition to their unique instructional challenges.
  
  

• Provide guidance to parents and educators about how to understand and address the needs of children across the developmental spectrum.

  Young children at risk of learning disabilities present with manifestations of delay that are quite different from those of children in the middle and high school years. Articulating the precise nature of these delays and carefully documenting assumptions about their etiology and response to intervention over time can help clarify whether concerns are due to social immaturity, emotional or mental disturbance, limited and inadequate early exposure to pre-academic learning opportunities, or intrinsic and neurologically-based learning disorders.
  
  

• Be outspoken advocates for students with learning disabilities.

  Medical practitioners can have a strong positive impact in local school communities, as well as at the state and federal levels. As respected citizens, their voices can often penetrate unintended bureaucratic barriers on Capitol Hill, and as advocates, they can help articulate policy recommendations in support of models of service delivery that reflect state-of-the-art science. They can also reflect on their clinical interactions with families and attest to the need for sufficient school-based fiscal and human resources so that children, both those who have not yet entered into a cycle of frustration and failure and those who qualify as having an educational handicapping condition, are not left waiting for needed school-based evaluation and intervention. Perhaps most importantly, they can assist parents and educators in deliberations about services and supports that can have an immediate positive impact upon school success.
  
  

• Encourage the enterprise of education to be more "scientific" in its approach to instruction and support of all children, especially those with learning disabilities.

  Despite their legal status as equal partners in the process of evaluation, determining eligibility for special education classification and in the determination of appropriate services for their child, parents are more often than not passive observers, relying on professionals to select and administer screening and evaluation tools and prescribe intervention strategies. Physicians should help parents and educators clarify the nature of the learning disability evaluation and pose questions that elucidate how assessment data inform decisions about instruction and support. For example, when children are found to be behind in reading comprehension, medical practitioners should remind parents and the committee on special education members of the need to articulate how intervention strategies are selected (are they "best practice," as determined by reliable research, or are they simply what the school district provides by virtue of availability and past practice?), what conditions need to be in place for effective strategies to be implemented with integrity and sustained over time, and what skills and supports need to be available so that improved student outcomes can be achieved in a timely manner.
  
  

• Discourage a "wait and see" approach to decision making. Human nature is such that we often put faith in explanations of past events rather than search for theories to accurately predict the future.

  Parents are often eager to dismiss concerns about learning disabilities as premature or even place blame on external factors that change over time, virtually eliminating any chance of meaningful early dialogue that might uncover legitimate information processing problems. There are substantial survey data to suggest that even parents who admit to suspicions of learning disabilities in their children will wait almost 1 year before seeking help.^5,6 Educators are often similarly predisposed to attribute students' struggle to immaturity or lack of effort, with similar unfavorable results.
  
  

• Provide parents and educators with tools to promote effective and ongoing dialogue.

  Too often, an assumption is made that information about a child is readily shared among parents, educators and other professionals, and related service providers. This is rarely the case. For example, an elementary school-aged child is seen for AD/HD medication management by her primary care physician. In addition to her assorted content area and specialty teachers, she also works with a special educator in a resource room program and has an after-school tutor for math. Her parents oversee homework and studying for examinations on a daily basis, and she attends religious training classes each week led by a lay member of her faith community. These individuals will not communicate with each other about their goals, expectations and their contributions to her success unless a concerted decision to do so is made by all. Meeting this challenge demands a shared commitment to establishing a systematic approach to gathering and sharing feedback, perhaps facilitated by questionnaires, calendared conference calls or even email.
  
  

• Help students be effective self-advocates. Longitudinal data point convincingly to the importance of self-advocacy as a critical variable in the success of students with learning disabilities.

  Students who can articulate specific information about their learning and behavioral needs, have established networks of individuals to whom they can turn for support, and are proactive in arranging for accommodations and modifications are, indeed, more likely to experience successful transitions during the school years and beyond. Children and their parents should be guided by members of the medical community to develop and maintain proactive postures when negotiating for services and supports at school or in work settings. Knowing how and when to disclose a disability or asking for assistance from friends and others in the general community is an invaluable skill that should not be left to chance.

There is no quick and easy roadmap for helping parents negotiate the complex challenges that comprise the lives of children with learning disabilities. Similarly, there is no single preferred approach when it comes to meeting the educational and behavioral needs of children with learning disabilities. Working together, parents, in partnership with members of the medical and educational communities, can formulate and oversee a prescription for success for these children. Starting with early identification and the delivery of research-based interventions, individuals with learning disabilities can realize success in the early school years and can transition successfully to post secondary educational settings and to gainful employment. Their paths to independence can be greatly facilitated by frequent and ongoing communication among parents, educators, and medical professionals. With access to current and reliable resources, these interactions can serve as a model for their becoming effective self-advocates as they take their place as valued members of society.

Read more articles from the October 2004 Journal of Child Neurology:

1. The Learning Disabilities Roundtable. Specific Learning Disabilities: Finding Common Ground. 2002.
2. Shaywitz SE, Shaywitz BA. Neurobiologic basis for reading and reading disability, in McCartle P, Chhabra V (eds): The Voice of Evidence in Reading Research. New York, Paul H. Brookes, 2004, 417-442.
3. Thompson BT, Raskind WH. Genetic influences on reading and writing disabilities, in Swanson HL, Harris KR, Graham S (eds): Handbook of Learning Disabilities. New York, Guilford Press, 2003, 256-270.
4. Simos PG, Breier JI, Fletcher JM, et al: Age-related changes in regional brain activation during phonological decoding and printed word recognition. Dev Neuropsychol 2001; 19:191-210.
5. Roper Starch Worldwide, Inc. Measuring Progress in Public & Parental Understanding of Learning Disabilities (pdf). Roper number CNT-119.
6. Raskind MH, Goldberg RJ, Higgins EL, Herman KL. Patterns of change and predictors of success in individuals with learning disabilities: Results from a twenty-year longitudinal study. Learn Disabil Res Pract 1999; 14(1):35-49. , September 20, 2004.

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Sheldon H. Horowitz, Ed.D. is the Director of LD Resources & Essential Information at the National Center for Learning Disabilities.