Reflections on Where We’ve Been: A Mother and Son’s Journey with Dyslexia

Dylan and Nicola at the beach

October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month.

Nicola—a mom of three and an advocate—and her son Dylan, a college sophomore, share what has made their journey unique in hopes of inspiring others. Below, they take turns asking questions and telling their story.


Nicola: I want to start by sharing what I love most about my son. He sees the world in many dimensions. He is inquisitive, caring and creative. Traveling with Dylan is one of my favorite things to do because he sees the nuances and details of the culture, architecture, food and music wherever we are. He expresses genuine joy when experiencing new things. He is very social and adventurous, and people seem to be drawn to him like a moth to a lightbulb. But what I’m most proud about is that after years of struggling with an undiagnosed learning difference, and battling self-doubt, he is a sweet and curious guy and he has found strategies to deal with his learning and attention issues.

Nicola: Do you remember what it felt like for you when you started school?

Dylan: I remember being asked in first grade to write down my name and to describe something I liked. I didn’t know how to write or spell, so I wrote how they do in cartoons with just a scribble in a bubble on the page because that’s what I thought writing was. I felt defeated—like I wasn’t normal, and I didn’t know why. I didn’t like going to school because I felt different, but I did like seeing my friends. Everything seemed easy for them, and it was frustrating that they seemed to understand what the teacher was asking but I didn’t. I kept waiting for something to click.

Dylan: When did you first really know that I was having trouble learning in school? Was it in reading or writing? 

Nicola: When you were young, we knew you had some trouble when it came to sensory things, and we worried you’d be overwhelmed in a big school. So we started you in a small, private school with your brother, hoping that a small community would make you feel secure and you could explore your ideas.

You were very creative and bright, but when it came to writing and reading you avoided the tasks; you had difficulty writing your name, yet your vocabulary was advanced.

When we asked the school why there was such a disparity and to help us figure out what was going on, we were told that you were “all boy” and you had a late birthday, but you would eventually catch up.

I knew there was something else going on, but I didn’t know what it was.

Dylan: At what point did you finally have hope and think it would get better?

Nicola: When you were in the private school, they wouldn’t do an evaluation, so we had to get a private evaluation.

The first big moment was when we finally had a name for what you were experiencing—dyslexia and executive functioning challenges. There was finally a reason why you were having such a hard time in school. However, there wasn’t a roadmap or any guidance from professionals on what kind of intervention services would best help you.

We spent years and a lot of resources finding tutors and trying to get you the services you needed.

It wasn’t until you entered middle schools—this time to our neighborhood public school—that things really turned around.

Finally, the school was proactive. They were quick to complete a full evaluation and get to the bottom of what was happening. They worked with us to put together an Individualized Education Program (IEP) and get the right interventions in place. It was then—once they were able to provide the specific type of reading intervention you needed—that you started to make real progress.

Dylan and his family

 

 

Nicola: What do you think your biggest accomplishment so far has been? And what are your goals?

Dylan: For me, it is being able to retain knowledge at a higher level and overcome my struggles with writing and reading.

It’s hard because dyslexia never goes away. I still have to work twice as hard as my peers. Ironically, it has made me a better student, and I have been on the honor roll since 10th grade.

Taking the SAT and ACT was difficult, but I was still accepted into many colleges including Loyola Marymount in Chicago, University of Colorado, Colorado State University, San Francisco University, Syracuse University, Oregon State University, Temple University  and San Diego State University. Receiving those letters of acceptance made me feel that they valued my learning style and I had something important to offer.

In the future, I want to have a successful career that I enjoy and allows me to be creative. I am interested in design, and I can see taking my ideas into the world of advertising or clothing design.

What is very important to me is that I am surrounded by friends and family and never stop learning.

Dylan: What has been the best part of this whole journey for you?

Nicola: Even though it was hard to see you struggle and it took a long time to figure out how to help, the best part is that you taught me how to be an advocate.

You taught me that in order to succeed, you have to build partnerships. You can’t accomplish things alone, and if you don’t speak up then nothing will change. I have also met a wonderful community of other parents and educators who are passionate about children and a career that I love and never imagined doing.

Dylan: If you could talk to every parent who’s dealing with some of the same worries, what would you tell them?

Nicola: First, I would tell every parent to trust their instincts; if you feel something isn’t right with your child’s education then reach out to your teacher or pediatrician.

I would add that parents should get involved and know their rights. It is every child’s civil right to an education and because of the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, there are protections for your child.

If your child struggles with dyslexia, make sure he receives the correct evidence-based intervention services. Question everything, but also listen and learn. You don’t have to be an expert, but you do need to be an educated consumer.

Get involved, connect with other parents and educators, and create a team to work on the situation together. You can’t and shouldn’t do this alone.

Nicola: What’s one thing you want to say to younger kids who, right now, are where you used to be?

Dylan: The world isn’t built for us, but we shouldn’t conform to regular learning styles. You have a unique brain and you can use that brain to solve problems and come up with solutions that other people couldn’t even conceive of. When school is difficult, it doesn’t mean you should give up. It means you should try twice as hard and figure out a way to change the system. You cannot change the past but you can shape your future.


About the authors:

Dylan Frost is a sophomore in college, majoring in product design and development. He is an avid soccer player, ceramic artist, and world traveler when there is time. He is active in his fraternity and looking for an internship this summer in product design.

Nicola Frost is the Regional Field Manager (Colorado) for National Center for Learning Disabilities (NCLD). Prior to becoming an advocate, she was an Emmy-award winning producer for the Food Network and directed documentaries. Her passion is in civil rights for all underserved communities. When she isn’t advocating she is biking the Rocky Mountains and kayaking with her family.


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.

Dylan
Posted by
College sophomore majoring in product design and development
Nicola
Posted by
Mom of three. Regional Field Manager, National Center for Learning Disabilities (NCLD)

High Achievement Requires High Expectations: My Family’s Story

Candice Crissinger and children

Candice Crissinger and children

Note: October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month


“High achievement always takes place in the framework of high expectation.”

Charles Kettering, American inventor, engineer and businessman.


As parents, we all want to see our children reach their full potential. Our visions of their successes and accomplishments may vary, but we all yearn to guide our children to greatness. How do we set them up to fulfill their potential? What foundations are we building for them? What roadmaps can we provide to help them navigate on their journey?

I am the proud mother of three terrific children (Biased? Yes!). While each of them is unique and inspiring in their own abilities and qualities, my sons have some very distinct similarities.

In the early school years, both began showing similar behaviors: high impulsivity, defiance, acting out, disruption, the inability to follow direction and under-developed social skills.

Both were bright and strong willed and insisted on doing things their own way in their own time.

Both were identified by educators as “challenging and difficult” and by peers as a “bad kid.”

They were both evaluated at five years old, 10 years apart. That’s where the similarities ended.

Let’s start with my older son’s journey.

In 2007, at age five, he was diagnosed with attention deficit hyperactivity disorder (ADHD), pervasive development disorder otherwise non specified (PDD-NOS) and anxiety. His individualized education program (IEP) team, despite all good intent, viewed my son through a deficiency lens. We let the troublesome behavior take the driver’s seat. His aptitude for learning did not seem to align with his behaviors. The behaviors escalated. The suspensions began. His progress regressed, and his growth stalled. We changed schools often. Even though we began as advocates, we soon became adversaries in IEP meetings.

On the other hand, my youngest son has had a very different experience. At age five, he was diagnosed with anxiety and showed a high likelihood of having ADHD. He was also identified as gifted. We worked closely with his school to find a teacher who was a good fit and we collaborated with the occupational therapist, the talented and gifted team, and the area education team, just to name a few.

We first took a close look at youngest son’s evaluation and began the work of identifying supports and developing a plan for acceleration. His problem behaviors were seen in the context of his aptitude and understood as a part of his development as a twice-exceptional student. His IEP centers around his strengths. And yet, we have only just begun to build the foundation of his future achievements. There is still far to go.

If you ask me, the major difference between my two children is in the way that we view them. After all, children with learning and attention issues have a unique set of challenges, and my children are not alone.

Children with learning and attention issues make up 1 in 5 students in our nation’s public schools.

Kids with learning and attention issues account for two-thirds of the children with IEPs who are suspended or expelled. They are 31 percent more likely to be bullied than kids without disabilities. They are three times as likely to drop out of high school as kids without disabilities, and half of all kids with learning disabilities are involved in the juvenile justice system by young adulthood.

These numbers could describe my oldest son, and that is alarming for me.

What drives these numbers? And what can be done?

We must set high standards and expectations for our kids. We must encourage and support our kids to meet the same expectations as their peers, and make sure they are engaged and feel a sense of ownership of their learning. We must encourage our students to view a wrong answer as a learning opportunity, rather than a shortcoming.

We expect insight and reflection to instill a lifelong journey of learning. Our expectations should likewise remain lofty.

When we have low expectations of our students, we allow for minimal effort. Student engagement, self-advocacy and achievement will most definitely stall when the bar is set too low. Self-esteem and gaining a sense of confidence in one’s abilities are lifelong benefits with roots in meeting high expectations.

We can make high expectations real for so many more kids if we focus on their strengths. Using strengths as a framework for educational support and structure will allow for children to use their natural abilities and talents to reach their highest potential.

Across the country, school districts are taking a new approach with Strengths Based IEPs. The move to this type of IEP will certainly require greater professional development for educators in each district. Parents can go to school board meetings and demonstrate their value, but there are great resources for anyone who wants to begin this process within your school or community.

Using a strengths-based approach made an incredible, positive difference for my younger son. Setting high expectations and focusing on strengths allows parents and educators to view our students through a mindset of competence and high achievement. The tools are available and my family has seen the impact firsthand. So let us begin the work to build the foundations of an exceptional educational experience for every child!


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.

Candice Crissinger
Posted by
Understood Parent Fellow with the National Center for Learning Disabilities. Medical Assistant in Pediatric Specialties, University of Iowa.

Time to Head Back to School and to Rethink Education

Johnny Collett and Kim Richey met with special educators and teachers at Hiawatha’s Essex Westford. Kim Richey chats with a student at Strong Foundations Charter School Kim Richey observed individualization strategies at work at Hugh Cole Elementary School. Johnny Collett and Kim Richey with students from Baxter Academy for Science and Technology Johnny Collett and Kim Richey meeting with teachers at the Baxter Academy for Technology and Science Johnny Collett and Kim Richey observe a lesson at Birch Meadow Elementary of Reading Public Schools Johnny Collett and Kim Richey visiting a classroom at Hanover Elementary School at Meriden Public Schools. Johnny Collett and Kim Richey participate in a round table discussion at St. Johnsbury Academy. Johnny Collett sat with children at Little One’s University. Johnny Collett and Kim Richey meeting with teachers, administrators, a parent and a board member at St. George Municipal School Unit. Group picture from the visit RSEC Academy in New Hampshire.

By Johnny Collett, OSERS Assistant Secretary


OSERS Deputy Assistant Secretary Kim Richey and I spent the week of September 10 traveling as part of the U.S. Department of Education’s 2018 Back-to-School Tour. During the week, ED leaders toured the country to get a closer, first-hand look at how schools are meeting the unique needs of students.

Kim and I spent the week in New England visiting traditional public, private/independent, and public charter schools to meet students and educators and to learn how these schools provide supports and services to students with disabilities.

We were encouraged by how these schools are rethinking education to ensure nothing limits their students from being prepared for what comes next in life―whether it is continuing their education, transitioning to a work environment, both, or whatever is their next right step.

We heard from diverse education stakeholders at each school. They provided us with great information, and it was incredibly helpful to benefit from their unique perspectives and experiences. We were reminded again, that those closest to the child really do know best about their education, and that the best ideas and innovations to ensure the success of children come from them, and not from Washington.

Day 1: Maine

First, we visited Maine’s St. George Municipal School Unit and the Baxter Academy for Technology and Science. They knew that science, technology, engineering, arts and math (STEAM) initiatives could help their schools better meet the needs of all children.

St. George Municipal School Unit, a public kindergarten through eighth grade school, has employed a “makerspace” for students to experience both high-tech and low-tech tools to learn, explore and share the world around them and turn their imaginations into tangible creations.

The Baxter Academy for Technology and Science, a public charter high school, exposes students to science, technology, engineering and math (STEM) career fields and professionals while still offering students a strong humanities curriculum to cultivate well-rounded individuals and passionate, self-directed learners.

STEAM and STEM activities at these two schools help support students with disabilities build confidence in their own abilities, be introduced to technical skills that they can apply to future career endeavors, and explore possibilities that may not have been available to them if schools did not challenge themselves to rethink how they best serve students with disabilities.

St. George Municipal School Unit and the Baxter Academy are preparing America’s students for professions not yet imagined.

Day 2: New Hampshire

We visited the Regional Services and Education Center (RSEC) and the Strong Foundation Charter School in New Hampshire Tuesday. These schools know that a one-size-fits-all or one-size-fits-most approach to educating students does not work.

The RSEC Academy’s middle and high schools specialize in the education of sixth through 12th graders with learning disabilities as well as other social, emotional and behavioral needs. RSEC Academy prepares students to transition from middle school to high school to graduation and beyond by ensuring students have access to educators and staff trained to support individual student needs. We had the opportunity to speak to students, faculty (including their Positive Approach to Learning Disabilities team), and alumni. Each person had a unique story to share, which helped to further emphasize the importance of individualized decision-making related to students’ needs.

The next school we visited in New Hampshire was the Strong Foundations Charter School, a first through eighth grade school whose history highlights the importance for families to choose a learning environment that works best for their student. Founded as a public charter school, Strong Foundations formed in order to provide comprehensive reading instruction to all students and improve student literacy and reading outcomes. New Hampshire Education Commissioner Frank Edelblut joined us as we observed students taking part in structured reading lessons and when we met with teachers, special educators, the school’s principal and board members.

Day 3: Vermont

We had the opportunity to visit traditional public schools, as well as private schools to see how Vermont’s public and private schools’ partnerships are helping to ensure students have opportunities in a variety of school settings.

We started at Essex Westford School District’s Hiawatha Elementary, a pre-K through third grade public school. We participated in the students’ morning routine including their interactive classroom meeting before observing direct instruction with a student using augmentative and alternative communication. Hiawatha demonstrated the importance of a customized learning experience to improve outcomes for all students. Through our interactions, observations and discussions with the Hiawatha community, we witnessed what is possible when schools work to empower students, give them their own voice and way of communicating, and support individual needs.

We followed our visit to Hiawatha Elementary with a tour of Vermont’s Little One’s University, a private preschool that has partnered with its local school district, Essex Westford. Their focus on early childhood education showed how providing early learners, including young learners with disabilities, with the proper educational foundation can set them on a path for success. As part of a private/public partnership, we toured the school and interacted with preschool learners in an inclusive setting with and without disabilities. We were thrilled to have Vermont’s Secretary of Education Daniel M. French join us as we met with a diverse group of stakeholders that included parents, teachers, special education directors and school administrators.

While in Vermont, we also visited the St. Johnsbury Academy, an independent coed day and boarding school that, in partnership with public schools, provides public school students with an education that best meets their individual needs. The academy offers a variety of educational experiences such as bio-medical and health services certificate, culinary arts, fashion design, and pre-university engineering and robotics. The academy also has on-site adult education courses, including training certificate programs, through a partnership with Vermont Technical College and the Vermont Department of Labor. We met with parents and students to hear why they chose an independent school, and we spoke with representatives from local education agencies in Vermont regarding the public/private partnerships with St. Johnsbury Academy. The insight provided by these parents, students, educators and LEAs offered valuable information on the importance of educational options for students with disabilities and their families.

Vermont offered us a wonderful opportunity for a listening session with administrators, educators, families, students and other special education stakeholders to discuss what excites them and what challenges them about the education of students with disabilities. It was evident that each person was committed to high expectations and improved outcomes for people with disabilities.

Day 4: Connecticut

We spent Thursday morning at the Meriden Public Schools system in Connecticut. Meriden Public Schools offered us a view of services and supports from early childhood education through post-secondary activities.

At Meriden’s Hanover Elementary School we saw the early learning wing, discussed ways they support students with disabilities, and visited their inclusive playground.

We also had the opportunity to hear presentations from students and learn more about Platt High School’s college and career readiness initiatives, which include working with select ninth grade students requiring additional support of the basis of grades, attendance or behaviors to plan their paths for success as a way of helping them set and achieve goals.

In addition to Meriden’s high school initiatives, we learned about their school’s Community Classroom Collaborative (CCC), a community based program that serves student with vary disabilities ages 18 through 21 in an age appropriate and natural environment, and the Success Academy, a program that provides individualized support and student-centered options for students in the district as they work toward their goal of graduating to receive a high school diploma . We learned how they chose to implement these programs, heard the reasoning behind establishing these programs, and listened to success stories of equipping students with the tools they need for the future. Programs like those in Meriden show there are many avenues for students to find success.

The district’s focus on the individual helps to prepare students for success, no matter what that version of success might look like.

Day 4: Rhode Island

We visited Rhode Island’s Hugh Cole Elementary school Thursday afternoon. This public elementary school uses data-based individualization within a multi-tiered system of support framework to meet particular intervention needs of its students. While at Hugh Cole Elementary, we observed their individualization strategies, heard about the school’s teacher development/support efforts throughout the years, and how the school makes its practices sustainable and replicable.

Day 5: Massachusetts

Our New England Back to School Tour concluded Friday in Massachusetts. The Reading Public School District showed how their district works with students with disabilities from early childhood through high school.

We had the opportunity to meet with staff from their Respect, Inclusion, Safety, Effort (RISE) Preschool, which emphasizes the needs of individual students. About half of RISE Preschool’s classroom students receive extra support to help them grow and develop based on their needs.

At the elementary school level, we observed co-teaching in kindergarten and fourth grade classrooms in Reading’s Birch Meadow Elementary School. We also spent time at Reading Memorial High School to round out the full picture of the supports and services provided to the district’s students with disabilities. Throughout the day, discussions with various staff including teachers, administrators, the district’s data and behavioral health coaches, and students demonstrated what it looks like when a district thinks holistically about the education of students with disabilities.

Rethink school. Question everything. Challenge the status quo.

Kim and I traveled to six states in five days and loved the opportunity to visit schools and meet many new people who are committed to doing what is right for each student. Students, parents and school personnel were eager to share their programs and stories with us. What we saw at the schools excites us about the possibilities of what can happen when people challenge the status quo of special education.

This week’s Back-to-School Tour further demonstrated that we must collectively continue to have the courage and perseverance necessary to make needed changes to our systems at the federal, state, and local levels if we are to achieve the goals that we, and most importantly the individuals we serve, envision.

Systems change is not easy, does not happen quickly and is not accomplished by a few. However, it’s worth it because at the heart of the system are the individuals we serve and their futures. The work is too important, the need is too urgent, and the stakes are too high for us to settle for anything less than whatever it takes to deliver on the promises made to students and families.

I’ve been asking people to join me in rethinking special education and in asking difficult questions that challenge the status quo of special education in our country. “Tinkering around the edges” is not going to get us to the goals that we envision.

I look forward to future visits to other states to see and highlight important work being done by states and schools to raise expectations and improve outcomes for children with disabilities.

Posted by
Assistant Secretary Office of Special Education and Rehabilitative Services U.S. Department of Education

Rethinking Special Education

Douglas, an 11-year-old 6th grader from Massachusetts, has dyslexia and Attention-Deficit/Hyperactivity Disorder (ADHD). He struggled in school from kindergarten through 4th grade, feeling frustrated in a learning environment that did not meet his individual needs and caused him to question his ability to succeed.

Douglas recently wrote President Trump and asked, “How can you as our president help kids like me get the right tools so they don’t get left behind?”

I met with Douglas and his parents on behalf of the president and the U.S. Department of Education this spring when his family visited Washington. We discussed his previous struggles and frustrations as well as his parents’ determination to get Douglas the help he needed to succeed in school.

We must rethink special education in America for students like Douglas. “Rethink” means everyone questions everything to ensure nothing limits any student from being prepared for what comes next. That begins with acknowledging the unique needs of each child and then finding the best ways to prepare each individual for successful careers and a meaningful life.

As a former high school special education teacher and state special education director, I have learned that delivering on the promises we have made to children and parents will not be achieved by merely tinkering around the edges.

Rethinking special education will require an unwavering commitment to address barriers that stand in the way of improving opportunities and outcomes for each child, and to make needed changes at the federal, state, and local levels. We must be willing to confront anything that does not facilitate needed improvement. That includes structures that limit opportunities for children with disabilities; practices that put the needs of “the system” over the individual needs of a child; policies that, no matter how well-intentioned, do not have the impact of improving outcomes for students; or laws and regulations that constrain innovation. We cannot ignore the challenges that students, parents, teachers and schools face.

Any policy that could deny education services to a student who needs them would be a failed policy. So we must root out anything that separates students from the individualized education they deserve.

The Office of Special Education and Rehabilitative Services is committed to confronting these—and any other issues—that stand in the way of a child’s success. We will partner with parents and families, individuals with disabilities—anyone and everyone who is focused on raising expectations and improving outcomes for individuals with disabilities.

This commitment means acknowledging that states, school districts, and parents know the needs of their students better than we do. Our goal is to provide them with as much flexibility and support as possible so that they can ensure their students’ needs are being met.

Douglas’ parents told me it wasn’t until Douglas was tested, properly diagnosed, and enrolled in a school that understood his unique traits and addressed his needs that things began to get better for him. In a different school, Douglas told me he feels comfortable and confident. He said, “I’m getting the right tools I need and learning how my brain works.”

Every student deserves the same opportunity and the same individualized attention that Douglas has. To be sure, this is and will continue to be hard work. However, it’s not just about working hard. It’s about working differently and more collaboratively, because meaningful and effective collaboration with all those who have a stake in the success of individuals with disabilities is critical to improving the outcomes that we envision.

The changes we need won’t happen overnight or only through the commitment of a few; but the work is worth it, because at the heart of all our efforts are the individuals we serve and their futures.

It is unacceptable for us to watch another generation of kids fail to achieve the outcomes they could have achieved just because the adults around them would not commit to solving difficult issues. We must demonstrate the courage and persistence necessary to achieve the goals that we, and most importantly the individuals we serve, envision.

No two children are the same, so no two children’s learning experiences should look the same. A personalized, student-centered education empowers students with disabilities and gives them the hope of living successful, independent lives, while a one-size-fits-all approach to education only limits students’ potential. Each child’s education should embrace his or her diverse traits and aspirations.

As we start this school year, I ask you to join me in rethinking special education in our country. While we all have a stake in the success of children with disabilities, no one has more of a stake in their success than they do.

The work is too important, the need is too urgent, and the stakes are too high for us to settle for anything less than whatever it takes to deliver on the promises we have made to children and families in our country.


 

Posted by
Assistant Secretary Office of Special Education and Rehabilitative Services United States Department of Education

“Voices from the Field” Interview with Kate Roper and Eve Wilder, Massachusetts Early Childhood Comprehensive Systems Project

Eve Wilder and Kate Roper

Eve Wilder and Kate Roper

Kate Roper is the Assistant Director of Early Childhood Services in the Bureau of Family Health and Nutrition at the Massachusetts Department of Public Health (DPH). Roper oversees several state and federal grants, including Project LAUNCH and Early Childhood Comprehensive Systems (ECCS) grants, and co-leads the Massachusetts Pyramid Model State Leadership Team. Roper has been in the field of early childhood education since 1978 as an infant teacher, teen parent child care director, trainer, adjunct faculty member, and independent consultant and curriculum developer.

Eve Wilder is the ECCS Coordinator at DPH’s Bureau of Family Health and Nutrition. Wilder has managed early childhood projects at DPH through the state’s ECCS grant for over 7 years. She has worked to strengthen early childhood systems of care in a variety of capacities since 2005, from providing home-based services to young children with autism spectrum disorders, to policy and program development at the Massachusetts legislature and DPH.


ED: How did you begin your career in early childhood?

Kate: I’ve always had a passion for understanding why people become forces for good. So, in college, I ended up with a joint major in psychology and education. I became more interested in early childhood by spending time in the nursery school on campus. At first I thought focusing on kindergarteners was too old, and then I decided focusing on preschoolers was too old. In my first job out of college, I ended up as an infant teacher in a child care program that was focused on supporting families going back to work. Here I gained an understanding of the importance of working with the whole family. Later, I earned a master’s degree in human development and worked with high-school-aged young parents. I started working alongside social workers and guidance counselors, and became familiar with the family systems model, where the family is central to supporting healthy development in their young child. I also began adjunct-teaching at local colleges on early childhood development and started consulting with the Massachusetts Department of Public Health (DPH).This eventually led to a position working directly for the DPH Bureau of Family Health and Nutrition. In 2003, Massachusetts was awarded an Early Childhood Comprehensive Systems (ECCS) grant from the U.S. Department of Health and Human Services’ (HHS’) Health Resources and Services Administration (HRSA). I started working on the ECCS grant which, at that time, was very open-ended and focused on coordinating across systems of family support, parenting education, early education and care, health, and mental health. Eventually, in 2006, I became the director of our ECCS grant. That year was also the inaugural year of the Massachusetts Department of Early Education and Care (EEC) and we partnered with them to build a strong emphasis on mental health. In 2009, we received a Project LAUNCH (Linking Actions for Unmet Needs in Children’s Health) grant from HHS’ Substance Abuse Mental Health Services Administration (SAMHSA) and I took on leading that project as well.

Eve: My career in early childhood started in college. I volunteered at a family shelter where I helped to provide child care. There was a boy living with his mom at the shelter who, at the age of four, was diagnosed with autism. I was blown away by the lack of supports for him and his mom and the late age of his diagnosis. That really motivated me to learn more about the various systems in place to help children and families—health, education, and social services—and to identify and find solutions to cross-systems-level issues. After I graduated from college, I became a specialty early intervention provider under the Individuals with Disabilities Education Act (IDEA) Part C, where I worked for several years providing home-based services to young children with autism spectrum disorders (ASD). I learned first-hand how the family and community context impacts child development. I then had an opportunity to work as a legislative aide for a member of our state legislature. It was fascinating working on the policy side, helping draft bills related to early childhood health and development. Eventually I earned a master’s degree in public health. I became a Leadership Education and Neurodevelopmental Disability (LEND) program fellow, and was able to focus on systems and policy issues impacting children with special health care needs. I started at DPH as a graduate student intern working with Kate and came on as staff when a position opened up on the ECCS grant. I’ve been at DPH for seven years working on both ECCS and the state’s Early Learning Challenge (ELC) grant.

ED: What efforts have you and your organization been involved in to improve the quality of early childhood programs and services?

Kate: For the first eight years of our ECCS grant we mostly functioned as a convening and development office that served any of the state’s early childhood collaborative projects and technical assistance (TA) opportunities. For example, we worked with the Children’s Trust to bring Strengthening Families to the state; and with EEC to being implementing the Pyramid Model. We convened a state leadership team for Pyramid Model implementation. We also used our convening power to develop an Early Childhood Mental Health Strategic Plan, which led the state to apply for and receive a SAMHSA systems of care grant and our Project LAUNCH grant. Our efforts were really focused on working with other state agencies to develop initiatives that benefit young children. It worked out nicely that during this phase, EEC invited us to the table when they applied for and were awarded the ELC grant. As one of four agencies within the state to receive ELC funding, we helped lead efforts to develop coordinated TA focused on trauma-informed care and family mental health. We also helped bring more of a health focus to child care in the state by building capacity in regional offices and by hiring regional nurses.

Eve: Prior to the ELC grant and regional nurses, our ECCS grant built capacity for health consultants supporting early learning and care programs. These consultants provided basic information when it came to working with children with complex medical needs or addressing the outbreak of a virus. When we put four regional nurses into the field, it was great because they provided direct medical support around medication administration (including asthma and severe allergies), worked with young children with diabetes, helped address the obesity crisis, and more. Unfortunately, when the ELC grant ended, we were not able to find a way to sustain this health work, including funding for the nurse positions. We have, however, tried to maximize the resources that were developed under ELC through TA and train-the-trainer approaches. We’ve had to be creative and adaptable in partnering with colleagues within DPH and across the early education field to sustain many components of the work.

ED: How has your ECCS project evolved over time?

Eve: In 2012, HRSA changed the guidance for ECCS and increased its emphasis on infants and toddlers. For our grant, we chose to address and mitigate toxic stress on the development of infants and toddlers in two local communities, Springfield and Chelsea. The first phase of this work had fewer defined parameters so our two communities did a lot of relationship building, including identifying a common vision for addressing toxic stress. We are now in the later phase, known as the ECCS Impact Project, which has additional structure, a focus on measuring our impact, and increased funding. As an ECCS grantee, we are part of a Collaborative Improvement and Innovation Network (CoIIN), which is a multidisciplinary team of federal, state, and local leaders working together to tackle a common problem. HRSA supports CoIINs that address a range of topics. We participate in the ECCS COIIN. The primary aim of the ECCS grant is to show a 25-percent increase in age-appropriate developmental skills among our participating communities’ 3-year-old children. With our two communities and our state-level partners, we discussed and defined what that means for us. Once we did this, the CoIIN guided us through using a Plan-Do-Study-Act methodology to impact change.

When we first convened our teams in Chelsea and Springfield, we focused on identifying where the needs were in these communities. We found that we have a strong IDEA Part C system, relatively high levels of developmental screening, and nearly universal health insurance coverage for children. However, we are still challenged by persistent inequities in health and development outcomes for young children of color and those living in poverty. Through a partnership with a local United Way program’s developmental screening initiative, we are training parents from the communities on how to use the Ages and Stages Questionnaire (ASQ), a developmental screening tool, and how to reach out to families that are not connected to existing programs. We do this through local institutions and establishments such as libraries, parks, and laundromats. This approach is focused on building connections to isolated or not-yet-engaged families, talking with them about their child’s development and, if there are any concerns, helping these families connect to resources and services.

Another exciting piece of this ECCS grant is a coordinated database for ASQ that we are building in partnership with the United Way. Parent screeners enter screening data into the database, and then other programs (with a data sharing agreement) can see the data at the aggregate community level. The goal is to begin to identify trends in the community. We have found this to be particularly helpful in Boston. When we were completing the ECCS grant application, we realized that we didn’t have a consistent health and development measure for young children at the population level, and this ASQ database has been our first step towards developing one. We are also exploring how we might build on some data integration efforts that DPH is undertaking, including a community-level dashboard that includes aggregate data, as well as ways to use de-identified but matched data across data sets. This allows us to look at aggregate data from various data sets (and keep individual data private) so we can identify areas of risk and the outcomes of interventions. The final piece of our ECCS grant that we’re trying to accomplish is to make more of a collective impact in the state, across agencies and funders, by building processes and networks that sustain the work.

ED: What suggestions do you have for others interested in using systems-level work to improve early childhood services and programs?

Kate: Cross-systems work is really powerful, and having HRSA funding for the convening and systems-building work in our state has been extremely useful. We recommend you start with a small project; build trust; and learn about other agencies’ and partner organizations’ strengths, expertise, and resources. Sustainability is always a challenge, so bring it into the work from the very beginning. Try to be creative and intentional about bringing outside partners in to help.

The other suggestion we have is to keep showing up to meetings. Attend those meetings where at first you aren’t comfortable, but eventually you can learn the language of that other system. For example, the word “assessment” means something different depending on who you are talking to and about. As you bring together folks from different disciplines and programs, become a translator across systems. ECCS has allowed us to be like Switzerland, a neutral convener. And always remember the focus of this work that we’re doing: it’s about children and families.


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.

Kate Roper
Posted by
Assistant Director of Early Childhood Services, Bureau of Family Health and Nutrition, MA Department of Public Health
Eve Wilder
Posted by
Early Childhood Comprehensive Systems Coordinator, Bureau of Family Health and Nutrition, MA Department of Public Health

IDEA Website Feedback

The Office of Special Education and Rehabilitative Services (OSERS) strives to enhance its Individuals with Disabilities Education Act (IDEA) website continually.

OSERS launched its IDEA website in June 2017 in order to provide updated department information regarding the IDEA to the public including students, parents/families, educators, service providers, grantees, researchers and advocates.

Prior to and after the launch of the site, OSERS gathered feedback from the public and has made updates to the site based on the feedback it received.

OSERS will continue to gather feedback about the website in order to enhance and add content to the IDEA website to ensure the site remains current.

Two video tutorials highlight features of the site:

Comment below if you have feedback regarding the IDEA website.

OSERS Assistant Secretary Talks Special Education

Johnny Collett, the Assistant Secretary of the Office of Special Education and Rehabilitative Services

Office of Special Education and Rehabilitative Services (OSERS) Assistant Secretary Johnny Collett and the National Center for Learning Disabilities Vice President and Chief Policy and Advocacy Officer Lindsay Jones talked about the March 2017 Supreme Court decision in Endrew F. v. Douglas County School District, teacher professional development related to special education, the U.S. Department of Educations’ role, regulatory reform efforts, and more during an April 18 interview.

“OSERS really is unique… one reason is we really get the opportunity to impact across the life of an individual with a disability, so really birth through adulthood including post-secondary opportunities and certainly our goal of competitive integrated employment for individuals,” Collett said. “That opportunity to impact across the life of an individual is just something that’s incredibly unique and really something I am struck by every day.”

Hear more from Assistant Secretary Collett in his recorded video interview, which was part of Understood’s “Chat with an Expert” series.

Use of Part B Program Funds for Technical Assistance to States on IDEA Data Collection

U.S. Secretary of Education Betsy DeVos believes high-quality data are an essential part of local, State, and Federal efforts to improve outcomes for infants, toddlers, children, and youth with disabilities. The Office of Special Education and Rehabilitative Services (OSERS) is seeking input from the public, particularly State educational agencies (SEAs) and State lead agencies (LAs), on how best to provide technical assistance (TA) to States on the collection and reporting of data required under Part B, Section 618 and Section 616, of the Individuals with Disabilities Education Act (IDEA), including input on the most effective and efficient method of funding this TA. Currently, that TA on IDEA Part B and C data collection is provided to SEAs and LAs through funds reserved by OSERS under IDEA section 616(i) of Part B.

As a matter of general practice, the Department regularly reviews its investments to ensure that they represent the most efficient and effective use of federal funds. As part of this process, the Department is exploring several options for providing TA to States on collecting and reporting data required under Sections 618 and 616 of IDEA, and we are seeking input on whether to pursue these options.

The options are:

  1. Continuing to fund national TA Centers from the funds reserved under Section 616(i) (Part B) of IDEA to improve the capacity of States to meet their IDEA Part B and Part C data collection requirements under Sections 616 and 618;
  2. Inviting SEAs and LAs to directly apply for funds reserved under Section 616(i) (Part B) to purchase TA to improve their capacity to meet their IDEA Part B and Part C data collection requirements under Sections 616 and 618;
  3. Reducing funds reserved under IDEA Section 616(i) (Part B) to fund national TA Centers to improve the capacity of States to meet their IDEA Part B and Part C data collection requirements under Sections 616 and 618 and increasing slightly the IDEA Part B formula funding to States under Section 611(d);
  4. Not reserving funds under IDEA Section 616(i) (Part B) for TA for IDEA Part B and Part C data collection and instead including the funds in the IDEA Section 611 formula grant; and
  5. Allowing States to reserve additional State set-aside funding for IDEA Part B State-level activities, which would be used to improve the collection, analysis, reporting, and use of data under IDEA Part B (not Part C) instead of reserving funds under IDEA Section 616(i) (Part B).

To help us in our review, we ask that you address the following questions in the comment section below. To protect your privacy and the privacy of others, please do not include personally identifiable information, such as a name of a child or school personnel, a Social Security number, an address, a phone number or an email address in the body of your comment. Comments containing the aforementioned information will not be allowed to remain on this site.

This blog will be open for comments from April 24, 2018 through May 24, 2018.

  1. What challenges does your State face in collecting, analyzing, reporting, and using IDEA Part B and Part C data required under IDEA Sections 616 and 618?
  2. To what extent do current Department-funded investments under the TA on State Data Collection program help your State address those challenges?
  3. Are there other investments that the Department should pursue to meet States’ IDEA data TA needs, and how should these investments be funded?
  4. What do you believe would be the potential benefits or limitations of the following TA funding options:

a) The Department continues to reserve funds under IDEA section 616(i) (Part B) to fund national TA centers to support the IDEA Part B and C State Data Collection Program;

b) States apply directly for funding under the TA on IDEA Part B and C State Data Collection program, which they can use to purchase TA on IDEA data collection required under IDEA Parts B and C; and

c) The Department does not reserve funds under IDEA section 616(i) (Part B) to fund new awards under the TA on State Data Collection Program under IDEA Part B and C and instead provides additional direct, formula funding to States under Part B of the IDEA? This option could also include allowing States to reserve additional State set-aside funding for IDEA Part B State-level activities, which would be used to improve the collection, analysis, reporting, and use of data under IDEA Part B (not Part C).

Background

Since 1976, IDEA has required States to annually report data on children with disabilities and, during that time, the Federal government has provided TA to States to meet those requirements. In 2004, Congress added IDEA Section 616 to require States to submit to OSERS, and make available to the public, a state performance plan (SPP) and an annual performance report (APR) with data on how each State implements both Part B and C of the IDEA to improve outcomes for infants, toddlers, children, and youth with disabilities. In 2004, Congress also added IDEA section 611(c), which gave the Secretary the authority to reserve up to one half of 1 percent of the amounts appropriated under Part B of the IDEA for each fiscal year to provide TA under IDEA section 616(i), where needed, to improve the capacity of States to meet the IDEA data collection requirements. The maximum amount the Secretary may reserve under this set aside for any fiscal year is $25,000,000, cumulatively adjusted by the rate of inflation. In fiscal year 2017, the Department reserved $21,400,000 for these purposes.

Since 2007, the Department has used these funds to support the TA on State Data Collection program, which is designed to improve the capacity of States to meet their IDEA data collection and reporting requirements for both Parts B and C of IDEA under IDEA Sections 616 and 618. The Department currently supports six investments under this program: the Center for IDEA Early Childhood Data Systems (DaSy), the IDEA Data Center (IDC), the Center for the Integration of IDEA Data (CIID), the Center for IDEA Fiscal Reporting (CIFR), the National Center for Educational Outcomes (NCEO) (jointly funded with OSEP’s Technical Assistance and Dissemination Program), and the EDFacts Technical Support Services II contract (jointly funded with the National Center for Education Statistics).

Conclusion

OSERS appreciates your support and suggestions as we continue efforts to improve the collection, analysis, reporting, and use of data as required in Sections 618 and 616 of IDEA as part of our commitment to ensure that infants, toddlers, children and youth with disabilities and their families have the supports and services guaranteed under IDEA.

We look forward to receiving your comments on or before May 24, 2018.

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.

Set Your Bookmarks to the New IDEA Site

IDEA Website

The Office of Special Education and Rehabilitative Services will automatically direct users from the Building the Legacy: IDEA 2004 site to the new Individuals with Disabilities Education Act (IDEA) website starting April 30, 2018.

OSERS launched the new IDEA website in June 2017 in order to provide updated department information regarding the IDEA to the public including students, parents/families, educators, service providers, grantees, researchers and advocates.

IDEA website users are encouraged to bookmark the new IDEA website: https://sites.ed.gov/idea.

While the Legacy site will redirect users to the new IDEA site on April 30, content from the Legacy site is available for reference on the new IDEA website on the Building the Legacy: IDEA 2004 historical reference page.

The Legacy site was developed in 2006 as a result of the 2004 reauthorization of the IDEA. The site was developed and updated mostly between 2006 and 2011. It had not received updates since 2013.

OSERS determined it would leave the Legacy site live after the new site launched to provide stakeholders ample time to compare the two sites, adapt to the new site and provide feedback to OSERS.

OSERS has made updates to the site based on the feedback it received from stakeholders since the initial launch of the new IDEA website.

OSERS will continue to gather feedback about the new website in order to enhance and add content to the new IDEA website to ensure the new site remains current.

Stay tuned for video tutorials highlighting features of the new site in the coming months. If you have feedback, comment on the IDEA Website Feedback blog.