She Will Never…

Note: May is Better Hearing and Speech Month.

Rene Averitt-Sanzone

Rene Averitt-Sanzone
Executive Director
Parents’ Place of Maryland

Those were the words I heard over and over again when my oldest child was born 27 years ago. She will never read past a third grade reading level; she can only hope for a menial or labor-oriented job; this is the best her writing will ever be so maybe you should just accept it, maybe you are in denial. Sound familiar? I am sure that I am not alone as a mom. Many of us have heard these words from well-meaning and well-intended professionals who are only trying to help.

In July of 1990, I gave birth to a very healthy and beautiful baby girl, Laurin. I mean, she was adorable (seriously, picture the Gerber baby. That was Laurin.). She seemed to be doing everything ahead of the developmental milestones: crawling, sitting up, etc. But then, on Christmas when Laurin was five months old, my sister came to me and said, “I just tripped and knocked over some pots and pans behind Laurin and she didn’t startle.”

It is safe to say that this single moment radically changed my world.

Throughout the next month, I tested Laurin’s hearing: clapping my hands behind her, clanging pots and pans, you name it. Yes, sometimes she turned and other times she did not. What’s a mom to do? It was then time for Laurin’s six-month well-baby checkup. I told our family doctor that I thought there might be a problem with Laurin’s hearing. His fateful response was, “It seems unlikely, but you are her mother and you know her best. Let’s just get her hearing checked.” All I could visualize was my Gerber baby sitting with big clunky headphones strapped on her head. How in the world could they test her hearing? All I knew of hearing tests was from my elementary school days—sitting very still, listening intently for a beep so I could raise my hand. Before we walked out of our doctor’s office, we had an appointment to see an audiologist.

The next few weeks were a blur—lots of crying, lots of testing, lots of unknowns, and then the audiology appointment. To be honest, I was so lost. It was like I stepped into a whole other world—one of strange words and acronyms, ABR, amplification, speech banana, Db, frequency… this was just the start of all of the special education lingo that was to follow shortly after our audiology appointment. So yes, Laurin’s auditory brainstem response (ABR) was basically a flat line. I’m not sure exactly what I felt, but I can say that Laurin was clueless. All she wanted to do was to play and explore the world around her. Our audiologist broke the news to us in a very direct and factual way, which was such a relief. He also said that he could be wrong. We went for a second ABR and his diagnosis was confirmed—she was profoundly deaf in both ears. Bilateral deafness; yes, another new vocabulary term added to my repertoire.

Looking back, I didn’t realize that the diagnosis was the easy part of this journey. After the diagnosis, our audiologist informed us that we needed to decide on a methodology. Huh? Consider amplification. Hmm? He also shared that there were very strong and opposing opinions about what were the best ways to teach children who are deaf. Later I learned that this was an understatement. He sent us off to do our research. Now remember, this was 27 years ago, and there was no internet. We went old school: our local library. We checked out every book they had on deafness and began to read.

I also received a wide array of advice: there is a residential program 30 minutes down the road; do not take no for an answer. I clung to this advice, which firmly cemented that I was Laurin’s mom and I had to make the decisions. It came from a Parent Educator at the Exceptional Children’s Assistance Center, North Carolina’s PTI (parent training and information center). Little did I know, my Parent Educator would later become my confidant and mentor. Just knowing that she was on the other end of the phone, or joining us for a training session, was such reassurance as we journeyed through Laurin’s life.

Four years later, we decided to have another baby. We felt like we had things somewhat under control. Laurin was fully included with her peers in our local childcare program. The school system was doing all kinds of creative supports and services for her. Her team and I decided that it was time for a cochlear implant. I had it all mapped out: surgery on June 1, second baby the middle of July—what could go wrong? Everyone told me that Laurin’s deafness was a fluke, right?

Her sister came on the fourth of July, and yep, you guessed it, she was another baby who was deaf. I wish I could say that I didn’t cry, but I did. However, this time I was a pro at the vocabulary and acronyms. This time, her big sister had already blazed the trail. Fast forward 20 plus years, and I am an empty nester. Both girls are grown and married. The youngest graduated college two years ago. And Laurin, her big sister? Well, as someone who was told she’ll struggle, and of course never earn academic honors…she of course graduated high school with honors, in the top 10% of her class; went onto college (which wasn’t for her); lived abroad; worked a variety of jobs until she figured out her path; and will graduate from college this May!

To say that I am proud of both of my daughters is the understatement of the century. I’d like to think that I played a role in their success and accomplishments, but truth be told, they came into this world as amazing women! It took persistence, and truly a village’s worth of blood, sweat, and tears from more people than I can name to make success and happiness a reality for them.

So what’s next for me? Hopefully grandbabies one day!


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Improving Early Childhood Intervention

Note: May is Better Hearing and Speech Month.

The Early Childhood Personnel Center (ECPC) logo

Infancy and early childhood are important times of life for all children, but more so for those who have delays in development. These delays may be from genetic conditions, disabilities, various risk conditions, or unknown reasons. While families may be the first to recognize a difference in their child’s developmental progress, professionals trained and licensed in early childhood intervention have the skills and knowledge to detect a developmental delay and to then provide intervention to remediate and/or minimize its impact on a child’s development.

Traditionally, professionals train in a single discipline that usually corresponds to an area of development. For example, speech-language pathologists are experts in the development of communication. Likewise, physical therapists are experts in a child’s physical or motor development. Additionally, most disciplines are trained to offer services and intervene across a broad age range—the lifespan of an individual. When a person completes a program of study in a discipline, the individual is then licensed in that discipline to provide services to persons across the lifespan.

These training and licensing practices create two challenges to providing effective early childhood intervention to infants and young children and their families:

  • Interventions may be focused to specific areas of development by discipline specific interventionists (e.g. an occupational therapist provides specific motor intervention and does not incorporate any other areas of development into her therapy/intervention); and
  • Interventions may be provided by a person who does not have any specific experience or competence in infancy or early childhood.

To address these challenges, the Early Childhood Personnel Center (ECPC), which is funded by the Office of Special Education Programs (OSEP) at the U.S. Department of Education, joined representatives from seven national organizations to examine the professional knowledge, skills and competencies that all disciplines should have when providing intervention to infants and young children.*

First, ECPC identified personnel standards (i.e., knowledge and skill statements) for each of the disciplines represented by the organizations. This yielded 752 individual standards. The organizations and ECPC aligned and reduced these standards until four thematic areas emerged that encompassed all disciplinary standards. Representatives of the seven organizations endorsed these as equally important to all disciplines providing early childhood intervention services. These representatives also operationally defined each area, which are contained in the following table:

Operationalized Definitions of the Four Core Competency Areas

CORE COMPETENCY AREA DEFINITION
Family Centered Practice Family-Centered Practice is culturally competent practice in natural settings that involves and actively engages the family in decision-making and the provision of services/therapy.
Interventions Informed by Evidence Evidenced Based intervention requires the use of scientifically based evidence to inform all screening, assessment, intervention/instruction and evaluation delivered to an individual child and family. Databased intervention and instruction refers to the process of collecting data about a child’s level of performance and designing and implementing a plan (e.g. IEP, IFSP) of instruction/ intervention that is evidence-based and focused on remediating a child’s and family’s needs.
Coordination and Collaboration Coordination and collaboration refers to working across professionals from other disciplines and community organizations in every facet of intervention/instruction.
Professionalism Professionalism requires all who provide early childhood intervention to have knowledge and skills in the laws, policies, practices that govern their professional discipline. It also requires that all in early childhood intervention demonstrate professional ethics and advocacy with each infant, young child and family they work with. Professionals in early childhood intervention will also take responsibility to improve their knowledge and skills through professional development and self-reflection.

The organizations’ boards endorsed these areas and definitions, and the organizations are now working with the ECPC to identify and validate indicators for each competency area. Training and materials will then be developed for both preservice and in-service audiences to teach and support early intervention professionals from multiple disciplines to provide interventions for the infants and young children across developmental areas.

It should be noted that these competencies will not replace the need for therapists and teachers to retain expertise and be licensed in their own discipline to address the needs of the infant or child. Rather, it will help ensure the effectiveness of integrating all developmental areas into a child’s interventions.


* The seven organizations included: The Council of Exceptional Children (CEC), the Division of Early Childhood (DEC), the American Occupational Therapy Association (AOTA), the American Physical Therapy Association (APTA), the American Speech-Language-Hearing Association (ASHA), the National Association for the Education of Young Children (NAEYC) and Zero to Three.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Mary Beth Bruder,
Posted by
Mary Beth Bruder, Project Director, ECPC, University of Connecticut

“Voices from the Field” Interview with Will Eiserman, ECHO Initiative

Will Eiserman with a back pack in the woods

Will Eiserman, Director, Early Childhood Hearing Outreach (ECHO) Initiative at Utah State University.

Will Eiserman is the Director of the Early Childhood Hearing Outreach (ECHO) Initiative, at the National Center for Hearing Assessment and Management, Utah State University. As Director of the ECHO Initiative, he has led a national effort to assist Early, Migrant, and American Indian/Alaska Native Head Start programs in updating their hearing screening and follow-up practices. Working in close collaboration with a team of pediatric audiologists and other Early Hearing and Detection Initiative (EHDI) experts, Eiserman has been responsible for the design of training systems, mechanisms for tracking and follow-up, and evaluation strategies associated with early and continuous hearing screening activities. His career has focused on a variety of efforts to improve early intervention systems for children with special needs, and on meeting the psycho-social needs of children with craniofacial disfigurements and their families. Eiserman’s perspective is influenced by his extensive international and cross-cultural experiences that include work in Ecuador, Vietnam, Costa Rica, Russia, and Indonesia.


ED: How did you begin your career in early learning and development?

WE: I first earned my doctorate in educational research and development, and then had an opportunity to do post-doctoral work in early intervention research that was funded by the U.S. Department of Education’s Office of Special Education Programs (OSEP). The project, based at Utah State University, looked at a common set of assumptions about early intervention for young children with disabilities and developmental delays. This was back in the late 1980s, and we were exploring questions such as, “Is early really better in terms of when we intervene with children with disabilities? Is more intervention better than less? What types of interventions are more effective with children experiencing different types of developmental delays?” It was really exciting. Ours was part of the research that set the stage for developing the early intervention (EI) and early childhood special education (ECSE) programs that are now under the Individuals with Disabilities Education Act (IDEA).

I continued my work on EI/ECSE when I moved to the University of West Florida, where we focused on inclusion and family engagement. We provided a lot of training and technical assistance (TA) for local programs on supporting the role of families in EI, and helped programs think of ways to provide interventions for young children with disabilities in more inclusive environments. I then had an international opportunity through a Fulbright fellowship in Indonesia, where I taught research and development methods in social sciences.

A common thread across these experiences is the social integration and empowerment of individuals with special needs or disabilities. They allowed me to see how often there is a constellation of variables that impact the social placement of individuals with disabilities, and how that can be addressed through policies and support.

ED: What are periodic hearing screenings and why are they so important for healthy early learning and development?

WE: When you ask early childhood educators what is important for young children, one of the things they discuss is language development. Language is at the heart of social-emotional development, cognitive development, and school readiness. As conscientious as most early childhood professionals are about promoting language, there is less awareness about the importance of monitoring the status of hearing throughout the early years of development. We tend to think about language primarily as expressive, but we are not as attentive to receptive abilities. Monitoring children’s hearing status is an important investment in healthy language development. If there are concerns, we can intervene and ensure there is minimal impact on language development.

I direct the Early Childhood Hearing Outreach (ECHO) Initiative, which is part of the National Center for Hearing Assessment and Management (NCHAM). NCHAM has been funded for over 25 years by the U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA/MCHB) as a national resource center. It has been instrumental in expanding

  1. hearing screenings, and
  2. the follow-up that may be necessary based on the results of the hearing screening for young children.

Over the last two decades, significant advancements have been made through the provision of newborn hearing screenings. These screenings are now available to more than 95 percent of the children born in the U.S. This is transformative and has dramatically changed the life landscape for individuals who are born hard-of-hearing or deaf.

The work of the ECHO Initiative arose from the observed success of newborn hearing screening efforts across the nation. Recognizing the significant changes newborn hearing screening represented for children and families, the HHS Head Start Bureau (now Office of Head Start) raised an important question about the technology that was making newborn hearing screening possible: whether any of it could be used to continually monitor the status of hearing for the children ages birth–3 years old who were being served in Early Head Start (EHS) programs. Head Start and EHS programs are required to ensure that all children in their programs receive evidence-based hearing screenings. We couldn’t think of any reason why the newly available technology wouldn’t work with this population, but it had never been done. This would require EHS program staff to be trained to screen young children with the Otoacoustic Emissions (OAE) screening method. While research suggested increased likelihood that continuous screening would result in additional identification of children with hearing loss as a result of late-onset or progressive loss, we weren’t sure what we would actually find.

The ECHO Initiative began as a pilot project with a handful of EHS programs in three states: Oregon, Washington, and Utah. From this pilot we discovered that yes, we can train early childhood program staff to conduct the OAE screenings and, in fact, staff often already had the set of skills most needed for conducting the screenings—getting young children to cooperate! Additionally, we found that when you screen 0–3-year-olds with the OAE, you do in fact find children with hearing loss that have not been previously identified. Newborn hearing screening programs have been shown to identify approximately three babies in 1,000 with permanent hearing loss. We found that in the 0–3-years-old range, subsequent to newborn screening, we typically identify another one to three children in 1,000 who have permanent hearing loss. This finding was consistent with research that had suggested the incidence of permanent hearing loss doubles between birth and the time children enter school; from about three in 1,000 at birth, to about six in 1,000 when children reach school-age. This finding was very compelling and led to what has been a multi-decade commitment from the Office of Head Start, in collaboration with HRSA/MCHB, to support the provision of evidence-based hearing screening and follow-up practices for all children in EHS and Head Start across the nation. This has occurred through the availability of online resources, training, and TA. Our website includes a broad array of resources and information about training and TA opportunities that help promote evidence-based hearing screening for young children.

ED: What are some of the challenges you have experienced in promoting regular hearing screenings, and what strategies have you tried to overcome them?

WE: Obviously, the use of technology nearly always involves some costs. Hearing screening equipment has associated costs, whether you’re using OAE, the recommended hearing screening method for children 0–3 years of age, or Pure Tone screening (historically used with 3–5-year-olds). Training is critical and needs to be provided in a timely fashion. It should also respond to high staff turnover, which is a reality in nearly all early care and education environments. To address these needs, the ECHO Initiative offers online trainings. We also partner with audiologists in locations across the country who can assist individual programs to conduct evidence-based hearing screening and follow-up practices.

Another challenge inherent in implementing any health or educational screening program has to do with ensuring the necessary follow-up occurs when children do not pass. There are multiple reasons why a child might not pass a hearing screening. Our data show that about 25 percent of children in the birth-to-age-3 range don’t pass the initial OAE hearing screening on one or both ears. We don’t recommend, however, that all of those children be referred for further evaluation. Instead, our protocol recommends screening these children again in 2 weeks, at which point we consistently see the “not pass” rate decline to about 8 percent. This may be due to screener error during the first screening; a transient condition that caused fluid in the middle ear and prevented an ear to pass the screening; or even a temporary wax blockage that worked its way out during the transpiring 2 weeks. For children who don’t pass the second screening, we recommend families go to a health care provider for a middle ear evaluation and treatment, if necessary. It is not uncommon that these children are found to have had an ear infection that wasn’t noted. This is not the completion of the screening process, however. Once any middle ear disorder is addressed, we screen the child again to see if they pass. If they still do not pass, then the child is referred to a pediatric audiologist for a complete audiological evaluation. You can see that there are potential challenges in supporting families to complete these many follow-up steps. Additionally, the availability of pediatric audiologists can present as a challenge. We have found that EHS and Head Start staff are often very skilled and innovative in supporting families through the completion of all follow-up, and recognizing that monitoring hearing is a critical part of promoting language development during the early years.

Spreading the message about the importance of hearing screenings is an ongoing challenge. We want to increase the awareness of this for parents, caregivers, and providers of health and educational services throughout early childhood. Given that the status of hearing can change at any time in a child’s life, we cannot rely on any single screening, but must screen periodically. We’ve developed several short videos about the importance of monitoring hearing throughout early childhood, and we invite viewers to share them and help us spread the word:

ED: What suggestions do you have for others interested in expanding regular hearing screenings as part of high-quality early learning programs?

WE: We encourage people to explore the resources and learning opportunities we have available on the ECHO website. In developing our various resources, we have recognized that those doing hearing screening nearly always have many other responsibilities as well. We have tried to provide a comprehensive set of resources so that programs can easily develop evidence-based practices without having to recreate the wheel. And we’ve tried to provide resources that are applicable and relevant across a variety of early childhood program contexts, including center-based or home-based programs; rural or urban program settings; and programs serving children in Head Start-funded programs, IDEA Part C, or health care settings. We also try to make our resources helpful across our stakeholder groups, which include many partners with an interest in increasing periodic hearing screenings—health care providers, IDEA Part C early intervention programs, EHS and Head Start programs, child care providers, families, and the Early Hearing and Detection Initiative (EHDI) programs within states.

My final suggestion is to be aware of the assumptions we often make in early childhood. We don’t ever want to assume a child can hear before that has been verified. For example, even if a child turns toward sound, that doesn’t give you enough information to know that the child’s hearing is in the normal range. We also don’t want to just assume a child has been assessed. Unless you have ear-specific results from an objective screening that was conducted within the last year, you really can’t be certain of the current status of a child’s hearing. Finally, we must caution that, even if a child passes an objective hearing screening, any concerns about a child’s hearing ability or language development would warrant a referral for a complete audiological evaluation.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Will Eiserman
Posted by
Director, Early Childhood Hearing Outreach (ECHO) Initiative, National Center for Hearing Assessment and Management, Utah State University

Autism—A Family’s Journey and the Lights Along the Way

Note: April is National Autism Awareness Month.

Carolyn Hayer with son Chris and their family

Carolyn Hayer with son Chris and their family


Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, a federally funded Parent Training and Information Center.


Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories.I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.

I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.

I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.

When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.

This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:

Gratitude.

Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.

Community.

I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.

Courage.

Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.

Forgiveness.

Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.

Humor.

Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.

In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Project HEART:
Heightened Excellence in Autism Research and Training

Note: April is National Autism Awareness Month.
Heart-shaped cloud

Autism Spectrum Disorder (ASD), a neurodevelopment disorder characterized by social communication delays and rigid and repetitive behavior, affects an estimated 1 in 59 children in the United States. The majority of these children receive intervention in inclusive public school settings where school systems are stressed by the dramatic increase in the number of individuals receiving special education under this classification.

The core characteristics and comorbidities of children with ASD are effectively addressed with a growing number of research and evidence-based practices and when implemented with adequate treatment fidelity in schools, these practices yield positive results. However, intervention research with children with ASD has been largely conducted in clinical settings or by researchers in applied settings rather than by teaching and related service staff and the use of evidence-based practices for students with ASD by teachers remains uneven.

Project HEART provides funding to six doctoral candidates to prepare national leaders within the field of special education who will assume faculty and research positions within special education and early childhood special education. HEART scholars receive leadership training in research, personnel preparation and policy with an emphasis on individualized instructional and behavioral interventions to meet the unique needs of students with ASD. In addition to special education courses, specialized coursework and an integrated professional seminar provide essential content in applied behavior analysis, implementation science, and cultural adaptation of research-based assessment and intervention for this population.

Scholars also participate in rigorous research methods coursework and complete applied research rotations in public schools that are using multi-tiered systems of support and implementation science to improve outcomes for high-need students with ASD. These rotations provide a context for scholars to complete doctoral competencies such as inservice for teaching and related service staff, applied research focused on coaching and behavioral consultation with teaching staff and district autism specialists to improve the use of evidence-based practices, grant writing, and supervision of pre-service teachers alongside autism leadership teams. These rotations also provide meaningful opportunities to sharpen clinical and inter-professional collaboration skills.

These research rotations have been formative for scholarly development and have resulted in the creation of multiple research and outreach projects including: a family navigator program for young children with or at risk for ASD and their families to increase early intervention service utilization and decrease parent stress, a systematic literature review to inform recruitment and retention of diverse participants with ASD, an online professional development series about ASD for special education teachers and paraprofessionals in a high needs district, behavioral tele-consultation with teenagers with ASD and their families in collaboration with PROMISE Wisconsin, and tiered behavioral consultation for preschool special education teachers in an under resourced community.


Grant Program Preparation of Leadership Personnel
Directors Wendy MachalicekKent McIntosh
Organization University of Oregon
Dates Start: 1/1/2016 > End: 12/31/2020
Purpose Six scholars will receive training in research, personnel preparation, and policy with an emphasis on instructional and behavioral interventions to meet the needs of children with Autism Spectrum Disorder (ASD). The five-year Project HEART culminating in a Ph.D. in Special Education will train future leaders to:

  • conduct research focused on improving outcomes for children with ASD and their families through evidence- based practices (EBPs) and multi- tiered systems of supports;
  • use this research to improve personnel preparation programs; and
  • prepare highly qualified special education teachers to use EBPs with children with ASD.

Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

“Voices from the Field”
Interview with Nancy Thompson and Janine Figiel

Nancy Thompson and Janine Figiel from Jolly Toddlers

Nancy Thompson and Janine Figiel from Jolly Toddlers

Nancy Thompson
Nancy is the owner and director of Jolly Toddlers, a thriving high-quality early education center. She opened this child care center in 1984 to meet the needs of local families looking for high-quality care. Nancy graduated from Fitzgerald-Mercy School of Nursing with a degree in nursing, becoming a registered nurse (RN). Later she attained an undergraduate degree in early childhood and elementary education, as well as a master’s degree in counseling from Gwynedd Mercy College. Nancy is the proud mother of four children, and grandmother to six beautiful grandchildren.
Janine Figiel
Janine is the Jolly Toddlers assistant director and the center’s facilitator of the Pyramid Model/PBIS. Janine graduated from Seton Hall University with a bachelor’s degree in psychology. After college, Janine worked as a human resource manager in her family’s business while raising her two children. Human interaction and positive reinforcement has always been one of her interests so when Nancy Thompson asked her to help facilitate the Pyramid Model/PBIS pilot program at Jolly Toddlers, she was thrilled. Janine has been at Jolly Toddlers since 2010 and has since received a Child Development Associate (CDA) certificate as well as a director’s diploma in early childhood education.

The Pyramid Model

The Pyramid Model, as referred to throughout this post, is a Positive Behavior Intervention and Support (PBIS) framework for young children. It is a tiered intervention model made up of evidenced-based practices. At the base (tier 1), are the universal supports for all children, provided through nurturing and responsive relationships and high-quality environments. The second tier (tier 2) is made up of prevention practices that target social and emotional strategies to prevent problems. The final tier (tier 3) consists of practices related to individualized intensive interventions for children with pervasive challenging behavior that need more than tier 1 and 2 supports and practices.

ED: How did you begin your career in early learning and development?

NT: I started my career as a nurse and was a visiting nurse for several years. When I had my own children, I became really interested in early childhood education (ECE). I knew how to physically take care of my children but didn’t know how to promote their learning and development. I decided to take some ECE classes and went back to school. I learned about the importance of the environment you create for young children and supporting social and emotional development. Eventually, I earned a degree in counseling. I thought it was critical to understand what is going on in children’s minds, what motivates children, and the best ways to support their growth and development. Then I decided to start my own business and opened a child care center to meet the needs of local women who were going back to work six weeks after having a baby. I was shocked because I couldn’t imagine, as a working mom, having to find care for a baby that young. I thought that with my background in nursing, education, and counseling I could create a child care center that would meet the needs of babies. We started out serving seven children and now, 33 years later, we have 25 employees and serve 110 kids ages 6 weeks to 6 years old.

JF: I graduated with a psychology degree and was thinking of applying to law school but decided to have children and work from home. I did this for many years while my children were young. I’m close friends with Nancy’s daughter and about eight years ago Nancy called me to see if I wanted to volunteer in her center and help her implement Pyramid Model/PBIS. I didn’t know anything about Pyramid Model/PBIS, but with my background in psychology it seemed like a good fit. I started out as a volunteer and loved it. I went back to school, took ECE courses, and earned my director’s diploma in early childhood education. Now, I am committed to our center and to implementing Pyramid Model/PBIS.

ED: What is the Pyramid Model/PBIS and why did you decide to implement it?

NT: For us, Pyramid Model/PBIS is all about being respectful to one another. You can walk into a center doing Pyramid Model/PBIS and it will take just a few minutes to realize that it feels different. Teachers are respectful to each other and the children, administrators are respectful to teachers, and staff are respectful to families. We actually teach children expectations and rules, and then we teach them strategies for sharing, making friends, and being kind. When I first learned about Pyramid Model/PBIS, I knew I wanted to implement it. There was an opportunity through our local early childhood intermediary unit to pilot Pyramid Model/PBIS. They offered to provide us with the initial training and a coach. We’ve been implementing with fidelity (the degree to which an intervention is delivered as intended) for 6 years. We’ve really seen it transform our center’s climate. There is much more collaboration and there is no gossiping; teachers really help each other out. Across the center we are clear and consistent about expectations of classroom rules and playground rules. We also use visual schedules to facilitate children’s understanding of what their day looks like.

JF: Nancy knew what she wanted to do, she just needed a name for it and some support. Pyramid Model/PBIS fits perfectly with her vision. Leadership is critical to implementation, so having her committed has been really important. Implementing Pyramid Model/PBIS isn’t easy; it takes about 3-5 years to get to a place where you are implementing with fidelity. It requires teachers being aware of how they talk to one another and to children. It is a tiered framework for figuring out how to support children in their social and emotional development. When implementing, centers must determine the specific strategies that will work best in their particular center. We have been focused on the bottom tier of creating a safe, warm, and nurturing environment. We have built in a lot of reward systems for the children; our goal is to catch them being good. Staff said they wanted a “reward” system too and soon the teachers started acknowledging one another, thanking each other, and recognizing accomplishments. Pyramid Model/PBIS really opened us up and bridged a gap we had with positive communication and collaboration across staff.

ED: How has your work with implementing Pyramid Model/PBIS improved the quality of early learning and development?

JF: We are a star 4 program (the highest quality) in our state’s quality rating and improvement system (QRIS), Keystone STARS. Implementing Pyramid Model/PBIS is a big part of why our rating is high. Children attending our center are happy; you don’t hear teachers yelling. The overall climate is wonderful. With Pyramid Model/PBIS, our teachers have been equipped with tools to meet the needs of all the children who attend. Twenty-five percent of our children are children with disabilities—our environment is an inclusive one. Pyramid Model/PBIS gave our teachers confidence to support all of the children, and to meaningfully collaborate with the therapists and special education professionals that come into our classrooms to work with the children with disabilities. Our teachers feel empowered to problem-solve and to figure out what works in an inclusive environment. In addition to the supportive climate we’ve created, our teachers take advantage of the great resources about implementing Pyramid Model/PBIS available online.

NT: Helping those with special needs is a priority for us and it has helped our overall quality improve. We regularly monitor children’s progress using the Ages and Stages Questionnaire (ASQ). Families don’t always catch when a child is struggling. We now have the tools to help parents, so if there is a real issue we can help families get the child the services they need. Pyramid Model/PBIS gave us a framework for understanding when a child may need more intensive intervention, and showed us the importance of monitoring children’s progress.

ED: What are some of the challenges you’ve encountered with implementing Pyramid Model/PBIS and any strategies you’ve used to overcome them?

NT: When change comes to a center there are those that will resist. When we decided to implement Pyramid Model/PBIS, I told our coach that some of our staff may not stay working with the center. In order for this to work, you need to have staff buy-in and for both administrators and staff to truly believe this approach is the right thing to do. I was prepared to potentially lose staff, and we did, but long-term Pyramid Model/PBIS has actually reduced our teacher turnover rate. I believe it’s because the teachers are happy and love to come to work. When we bring on new staff, they are supported by the veteran teachers. For example, if a new teacher starts and doesn’t know how to set up a classroom to maximize positive social, emotional and behavioral development, our veteran teachers will work with them and discuss what works and what doesn’t with a particular age group.

JF: Another big issue for us has been when we have a child with significant needs, but that child hasn’t been identified as qualifying for special education. We need extra help to support the child, and this can add a lot of stress for our teachers. At times we have hired extra teachers to provide the support. We know that if this child receives the interventions and attention early, they will thrive, but it can be hard for us as a small business. Our teachers are great at being resourceful and problem-solving; they usually get online and try to find creative approaches.

NT: Janine is the internal coach at the center. She works really hard to support our teachers when we have a child with more intensive needs. We are still trying to figure out what this support looks like, particularly when we don’t have access to other professionals to help us problem solve. We are seeing more and more children with behavioral issues, born with drug addiction, and with parents in jail; the kids and parents in these situations are tired, and it takes a lot of energy to help and support them. One solution we’ve found involves working with and educating families. We have shared a lot of Pyramid Model/PBIS resources with our families. When a child is really struggling with behavioral issues, we will collect and share data about the child’s behavior with their family and then develop a plan with strategies that can be used at both home and school.

ED: What suggestions do you have for others interested in promoting positive social, emotional, and behavioral development in young children?

JF: My advice for a program interested in Pyramid Model/PBIS is to start small, with easy and concrete steps for teachers. Lay it out for them and incorporate their strengths. For example, our teachers were really visually creative and focused on making things pretty, so one of the first things we did was to work on posting rules and expectations visually, including visual schedules that helped kids know what was happening each day. Also, implementing Pyramid Model/PBIS is a process, so be aware that you will likely have to go back and make changes to what you are doing. It really does take 3-5 years, so start small. Some other things we implemented early were bucket-filling books and beginning to teach children to recognize and understand different emotions. These were concrete strategies teachers could begin to use in order to see positive change.

NT: Also be flexible as an administrator. You may need to move teachers around. For example, we had to move a teacher to a different age group. You also need to think about how you staff your classrooms. I know that I want a teacher in each classroom that knows those children every day, so we make sure that happens; we staff our classrooms intentionally. We don’t put all of our kids in one big room at the end of the day. It is critical for kids to have their “own” room, and for the teachers in that classroom to really know them. My final suggestion is to be thoughtful about communicating with families on a regular basis.

JF: Hold onto your vision but be flexible. Take staff buy-in seriously. This can take time, but once teachers see the positive impact of the new strategies, they become more engaged. Providing structure, establishing clear expectations for kids, redirecting and replacing behavior with something positive—these strategies give teachers the tools to support all children. It is powerful when they use the strategies with a child with challenging behaviors and they see that it works. Our teachers also now recognize the importance of teaching kids social skills. Some children need to be taught how to play, make friends, and behave, and our center now has the tools to do this! Another important thing to remember is that Pyramid Model/PBIS looks different in every classroom and every center. It is an overall feeling of positivity and support among staff, children, families, and administration. It’s building a welcoming atmosphere as opposed to completing a checklist of things you do every day.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Another Journey

Note: April is National Autism Awareness Month.

The Bae family during trip to England

The Bae family during trip to England

Just like any other school day, Eugene, my son with autism, left on the bus this morning to go to a day program provided by our school district. For the last 20 years, he and I wait for the bus by sitting on our front porch. As he steps on the bus, he shouts at me with his happy high-pitched voice, “Bye Mom!” This is our ritual to begin each new day, to meet that day’s challenges, emotions, promises, and hopes.

In June this year, he will age out from the district program. I cannot help being emotional whenever I think about his first day of preschool and the journey that Eugene and our family have been on since then. On that day, I cried in the car for two hours after separating from my miserable, crying child.

Since that first day, school has been a challenging place for both Eugene and me. While Eugene was learning the alphabet and phonics, I studied the never-ending list of special education acronyms.

Just like other special education moms in this world, when my child cried about his school work, I wept on my steering wheel, but when he was happy in school, I felt like I had the world on a string. At times, figuring out how to navigate the world of special education for our son with autism while struggling with his atypical behaviors seemed like a brutal mission for a family like us, and we often felt we were not understood, not just because of our heavy Korean accents

However, our fundamental concern has not changed in these 20 years, and that is to help our son reach the final destination for his journey—Eugene being able to live an independent and inclusive life in the community. Of course, this is the same concern shared by thousands of moms and dads who have children with disabilities.

Young and Eugene Bae

Young and Eugene Bae

As a family we have had to adjust the sails of our ship quite a lot to reach this destination. We had to get past phrases like “below average range” or “socially maladjusted” since they were not helpful in steering the path for our son. As a family, we now see more clearly the incredible strengths and positive qualities of a young man who is able to say proudly “I am a person with autism.” We have learned that it is more helpful for us to make sure that Eugene is in the center of all service plans than putting systems first and having him fit around these systems.

Because of putting Eugene at the center, we have become more efficient in figuring out how to change the world around us and finding the resources we and Eugene need to reach our goal. As Eugene grew, our family grew too and our minds opened up to the new experiences that our son brought us.

I am not completely positive about Eugene’s future in the community. I see and feel the gaps between how my family and how society see the possibility of Eugene becoming a “successful” member of the community, and how we define success.

Many people still have a difficult time moving away from the stereotype that measures people with autism and other developmental disabilities as a social cost. However, I also believe that our society is moving in a better direction, becoming more able to envision a person with a disability as a valuable asset.

We have witnessed the notably increased capacity of our schools and workplaces to accommodate individuals with disabilities since the first form of the Individuals with Disabilities Education Act became law in 1975. These accomplishments were not possible without the sacrifices and efforts of so many parents, educators, and leaders of this country. Today, their legacy continues through the next generation of families, educators, and leaders, and it only expands as we as a family sail toward the final destination of our journey.

The next three months will be an interesting time for our family. Frankly, it makes me nervous thinking that Eugene will no longer be in the classroom. There will be no more IEP meetings to attend and no school buses to pick him up.

Eugene and our family know that this is a start of the next stage of journey. However, this time, Eugene will be the captain of the ship, steering us toward that goal of independence and community inclusion. This time, I am not crying; I will take a deep breath to prepare myself for another thrilling sea of possibilities and opportunities.


Young Seh Bae, Ph.D. is Executive Director of Community Inclusion & Development Alliance (CIDA) a federally funded Community Parent Resource Center in Queens, New York. She was a faculty member of Teachers College, Columbia University, and served as president of Korean-American Behavioral Health Association.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Evidence-based Practice and Autism

Note: April is National Autism Awareness Month.

Evidence-based Practice cake


Katie is an 18-month-old who does not respond when her mother calls her name, likes to watch spinning objects, and does not use words or gestures to communicate.

Jose is a 17-year-old student who gets stellar grades in all his courses, started the cyber security club in his high school, but he does not have anyone he can call his friend.

This toddler and teenager reflect the continuum of abilities and disabilities that is autism spectrum disorder (ASD).

As a society, we in the United States are doing a truly remarkable thing. We have made a commitment to provide an appropriate educational program in the least restrictive environment for children and youth with ASD and other disabilities, and to make sure that the practices in these programs are based on evidence of effectiveness.

But, where do teachers, other practitioners, and parents look to find out which practices are based on research evidence? We would not expect them to go to the research journals to search out the practices that work.

In 2007, the Office of Special Education Programs (OSEP) funded the National Professional Development Center on ASD (NPDC) to promote practitioners’ use of evidence-based practices. One of the first activities of the center was to conduct a comprehensive review of the focused intervention research literature. NPDC conducted an updated review in 2014. The review screened 29,000 articles on autism and identified 27 practices as evidence-based.

To identify interventions or teaching strategies by name and definition is not enough information to prepare teachers and others to use them in their work with children and youth with ASD. They need to be translated into specific, practical descriptions, with examples of how to use the practices to support learning and development.

With funding from OSEP, NPDC investigators created online modules for all of the 27 practices. The modules contain clear directions about how to implement practices and include video examples, fidelity checklists, and downloadable PDFs for all the module content. The website is free and has over 45,000 registered users to date.

It has become a major source of information about evidence-based practice for children and youth with ASD in this country and around the world. For example, over 400 teachers are part of the CAPTAIN Project in California and they are committed to incorporating these practices into their programs for children with ASD. The SOTIS program in Warsaw, Poland is using these practices in multiple autism preschool centers. Individuals from China, Italy, Saudi Arabia, Morocco, and Poland have voiced interest in translating the practices into their native language.

Knowledge about effective interventions does not stand still. In the years since the last review ended in 2011, we have located over 26,000 articles published on autism intervention and have launched an update of our previous review through the new National Clearinghouse on Autism Research and Practice at the Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill.

Over 150 reviewers are currently evaluating the quality of research articles to be included in this updated review. There is always new work to be done in this area and, pending funding, we hope to extend the review to interventions that have been conducted with adults with ASD and to conduct an annual update to the evidence base, including updating the online modules with new information from the research literature.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Project ASD: Special Educator Preparation in Autism Spectrum Disorders

Note: April is National Autism Awareness Month.

Supporting Children and Youth with Autism

April is Autism Awareness Month, and a perfect time to highlight the OSEP-funded Project Autism Spectrum Disorders (ASD) at the University of Central Florida (UCF). Since 2004, this innovative personnel preparation project has been addressing the critical need for special educators prepared to serve the increasing numbers of children identified with ASD. A nationwide listing of teacher shortage areas revealed 48 states reporting shortages of special education teachers for the 2016–17 school year, with many states identifying the specific need for special educators prepared to serve students with autism.

What is Project ASD?

Two federal personnel development projects currently support Project ASD at UCF, projects ASD IV, funded 2014–18, and ASD V, funded 2016–20.They represent the culmination of over a decade of research focused on teacher preparation in ASD. Project ASD’s graduate program addresses persistent gaps in services, including the need to (a) increase the number of highly effective special educators serving students with ASD, and (b) prepare special educators with specialized knowledge and competencies for working with students with ASD. Project ASD addresses identified gaps by implementing three primary goals:

  1. Recruit high-quality graduate-level scholars including traditionally underrepresented groups with potential to become highly effective special educators for students with ASD.
  2. Prepare scholars in an evidence-based special education program that includes field experiences in urban, high-poverty settings, and leads to state certification in Exceptional Student Education (ESE) and endorsement in ASD.
  3. Retain scholars through completion of the program and induction into the profession through ongoing advisement, financial and academic support, and mentorship.

Master’s Degree and Certification in ESE and ASD

Project ASD has supported over 300 scholars in earning a master’s degree and full certification in ESE, and State Endorsement in Autism. The success of the project can be attributed to ongoing collaboration between university faculty, school district personnel, agencies, and families. Project ASD employs a multi-faceted recruitment model targeting exceptional scholars dedicated to the field of special education, including those from traditionally underrepresented groups. Scholars receive support to complete a graduate program of study, which prepares them to implement evidence-based practices for students with ASD to increase student achievement across domains including academic, communication, social-emotional, independent functioning, and vocational. Project ASD also hosts a Mentor Demonstration Classroom program that features project graduates who understand the challenges of the master’s program, and the unique needs of beginning special educators in classrooms for students with ASD. These exemplary teachers provide video demonstrations, serve as guest speakers, and open their classrooms to provide Project ASD scholars with opportunities to integrate coursework and field experience.

In addition to its close work with scholars at UCF, Project ASD disseminates information related to teacher preparation in ASD through publications as well as numerous presentations at state and national conferences. Teacher Education and Special Education recently published an article featuring Project ASD’s Quality Indicators for Classrooms Serving Students With ASD instrument. For further information, visit the Project ASD website, or contact the project directors at projectasd@ucf.edu


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Eleazar Vasquez III, Director and Associate Professor for the Toni Jennings Exceptional Education Institute
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Director and Associate Professor for the Toni Jennings Exceptional Education Institute
Cynthia Pearl
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Faculty Administrator in the Exceptional Education Program
Matthew T. Marino, Professor in the Exceptional Education Program
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Professor in the Exceptional Education Program

A Vocational Rehabilitation Success Story: Joseph Cali

Note: October is National Disability Employment Awareness Month

Joseph

Joseph Cali

The New Jersey Division of Vocational Rehabilitation Services (DVRS), which receives Federal funding from the Office of Special Education and Rehabilitative Services’ Rehabilitation Services Administration (RSA), is pleased to share Joseph’s success story in honor of National Disability Employment Awareness Month (NDEAM).


Following an automobile accident in 2006 resulting in paralysis, Joseph spent several months in physical therapy and rehabilitation and now uses a motorized wheelchair. Joseph went on to obtain a Bachelor’s degree in Psychology and a Master’s degree in Rehabilitation Counseling in 2014—both from Rutgers University. Joseph also acquired specialized certificates in physical rehabilitation, supervision, and management.

When Joseph connected with the Vocational Rehabilitation program at DVRS, he was working part-time as an Adjunct Professor at Brookdale Community College. Joseph sought assistance from DVRS with modifying his van to independently travel to work and obtaining full-time employment. With the support of DVRS, Joseph took part in a pre-driver and behind-the-wheel driving evaluation to assess his driving needs. DVRS also supported the funding of modifications to Joseph’s van along with the necessary driving instruction.

On the employment front, DVRS certified Joseph as eligible for the Schedule A hiring authority with the federal government. After attending a federal job fair, Joseph interviewed with the Social Security Administration, who hired Joseph as a Claims Adjuster in Neptune, N.J. Joseph now works full-time and reports being satisfied with his career path and the services he received from DVRS. A special congratulations to Joseph who recently shared that he is engaged and will be getting married soon!

For more information about DVRS, please visit New Jersey’s Career Connections.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Chris Pope
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WIOA Implementation Team Facilitator Rehabilitation Services Administration U.S. Department of Education