IES Blog

Institute of Education Sciences

Enhancing Reading Instruction for Children with Down Syndrome

In February, President Obama named two Institute of Education Sciences (IES) grantees as recipients of the prestigious Presidential Early Career Award for Scientists and Engineers (PECASE). Christopher Lemons (Peabody College of Vanderbilt University) and Cynthia Puranik (Georgia State University) were honored in Washington, DC at a White House ceremony this past May, along with 103 other recipients of the award.

Dr. Lemons and Dr. Puranik have recently completed an IES-funded project, Enhancing Reading Instruction for Children with Down Syndrome: A Behavioral Phenotypic Approach. They served as the Co-Principal Investigators of this study to develop an intervention for improving reading for children with Down syndrome (DS). The intervention is a supplemental, 16-week reading curriculum that incorporates critical components of early reading (e.g., vocabulary, decoding skills, fluency) and has been adapted and modified to align with the Down syndrome behavioral phenotype—a set of characteristics commonly shared by children with the syndrome. The characteristics of focus for this intervention include the ability to process visual information and challenges with auditory and expressive language, using working and short-term memory, and motivation. Kim Sprague, program officer in the National Center for Special Education Research, spoke with Dr. Lemons (pictured right) about the project and next steps.   

Why do we need this reading intervention?

Over the last decade, research has demonstrated that students with DS can do better in school than we ever imagined in the past. The purpose of our intervention is to increase reading outcomes by adapting instruction that targets phonological awareness and phonics so that it is more closely aligned with the Down syndrome behavioral phenotype in an attempt to make the instruction more effective for children with Down syndrome.

What is the purpose of studying phenotype?

This is something I am often asked. We were looking for ideas to improve reading interventions for students with DS and there is evidence in the literature base that students with DS have a heightened probability of sharing certain characteristics—a behavioral phenotype. So we sought to develop an intervention based on this specific phenotype and our goal was to determine whether adapting instruction for a group who share common features may hold promise.

What was the intervention that was implemented for children?

Through the iterative process for this development grant, we experimented with applying several adaptations to evidence-based phonological awareness and phonics instruction. Our primary adaptation was to teach students a key word for each letter sound. We selected words that students were likely to know—like “dog.” In each lesson, we focused on three letter sounds paired with a picture and taught the student to match the picture to the printed word. We then used this word-picture pair to support the other components of the lesson that were focused on phonological awareness, alphabetic principle, decoding and scaffolding working memory. We worked with the paraprofessionals and teachers to train and support their implementation of the developed intervention.

What were the study results? 

We have learned that our intervention is effective at increasing reading outcomes for many students with DS who enter the program at the lowest reading levels. These children appear to have benefited from our adaptations. This said, there were some children with DS who needed additional individualization, so special education teachers need to understand how to provide this type of ongoing adaptation. Also, we demonstrated that many students’ who had already “broken the code”—students who already understand and can apply the alphabetic principle—didn’t need adapted instruction. They benefited from the standard version of the phonics intervention.

What are the next steps based on this work?

We still have a lot of work to do. I think we have had success in helping students improve phonological awareness and decoding skills. We need to more strongly focus on comprehension. So, how do we provide assistance to help them answer who, what, where, and when questions? How can we support students’ abilities in interpreting the meaning of texts independently? And, more specifically for students with DS, we need a better understanding of the variability that exists related to characteristics associated with the phenotype. We need stronger empirical work to explore potential aptitude-by-treatment effects that may result from this line of work and continue to explore interventions that are feasible and effective.

For reading instruction provided to students with DS, ensuring that paraprofessionals are appropriately trained and supported to deliver the reading intervention as well as to adapt to the individual needs of the student is critical. Doing so may offer the greatest hope to improve outcomes because paraprofessionals are often able to provide one-on-one instruction more frequently than the special education teacher. During the study, special education teachers and paraprofessionals were willing to provide one-on-one instructional time to participating students for four or five days per week. However, most of the teachers indicated that they would not be able to maintain this level of intensity after the study was over.

We are beginning work to explore how to better support teachers of students with intellectual disabilities as they implement data-based individualization, or DBI, as a method to enhance reading outcomes. We think this approach holds promise. Readers of your blog can learn more about this approach at the National Center on Intensive Intervention at www.intensiveintervention.org.

Wendy Wei, a program assistant in the National Center for Education Research, and Diane Mechner, who worked as an IES intern, contributed to this blog post.

NCSER Celebrates Down Syndrome Awareness Month

By Kristen Rhoads, Education Program Specialist, Office of Special Education Programs

October is Down Syndrome Awareness Month – a time to celebrate what makes individuals with Down syndrome wonderful.  
 
According to the Centers for Disease Control and Prevention, Down syndrome occurs in 1 out of approximately every 700 births, with about 6000 babies born with Down syndrome in the United States each year. It is a lifelong, genetic disorder caused by a full or partial third copy of the 21st chromosome.  Individuals with Down syndrome typically demonstrate profiles of relative strengths in visuospatial processing,  social skills, and receptive language and needs for support in many areas including expressive language, motor, and cognitive skills.  They may also have other health-related issues, including most commonly: hearing loss, ear infections, sleep apnea, eye diseases, and heart defects. With services, supports, and high expectations for performance, many individuals with Down syndrome earn high school diplomas, participate in post-secondary education, live independently, and become valuable contributors to society.  
 
In celebration of Down Syndrome Awareness Month, we asked Dr. Stephen Camarata, Professor in the Department of Hearing and Speech Sciences at Vanderbilt University, for his thoughts on educating children with Down syndrome and potential directions for research. Dr. Camarata is the Co-Investigator for a NCSER-funded grant to evaluate the efficacy of interventions designed to produce speech accuracy and comprehensibility of elementary school students with Down syndrome.

What should families keep in mind when their child is initially diagnosed with Down syndrome?

In our Down Syndrome Clinic here at Vanderbilt University, there is an initial "burst" of medical activity when the family first learns that their child has Down syndrome. Families spend time making sure that the child’s basic health needs are met and have a lot of appointments doing imaging, surgery, and so on. Then, the family settles in as the Down syndrome unfolds. The child’s development –talking and communication, education, and behavior - all become immediate and long term foci.

Are there common misconceptions about individuals with Down syndrome?

A BIG problem is that there is a myth of a learning shelf life or a mythical critical period for learning.  All too often this means that educators quit trying to teach academic skills to people with Down syndrome when they reach the age of 10 or 12. Tragically, this can mean pushing children through custodial care with minimal academic content instruction until they "age out" of educational support.
 
Another important consideration that I sometimes see is that people have low expectations and, therefore, underestimate the learning abilities of a child with Down syndrome. In a sense, they set the bar "too low” or do not provide meaningful learning opportunities. Therefore, educators may inadvertently prevent a child with Down syndrome from reaching his or her potential. Down syndrome is highly variable, so it is important to provide multiple types of opportunities and let the child show you how much and how fast he or she can learn.

Are there areas of research or practice that you think require more attention?

With regard to key research areas, my own recommendations are to:

  1. Examine further the benefits of inclusion – for both a child with Down syndrome and his or her peers
  2. Develop and evaluate interventions or strategies that improve communication, speech, language, social and literacy skills, especially reading comprehension.
  3. Investigate learning in adolescence and develop and evaluate interventions that optimize academic and transition outcomes in middle school and beyond.
  4. Examine strategies to improve parent and family support. All of the terrific things that we have learned for training parents of children with Autism Spectrum Disorders may also work for families that include a child with Down syndrome.  More research in this area is needed. 

Visit our website, for more information about the research that NCSER funds.

Questions? Comments? Please send them to IESResearch@ed.gov.