Northern Lights Collaborative, partners, host computer science learning event in Duluth

March 12, 2024

On February 22, the Northern Lights Collaborative for Computing Education hosted an event to share and discuss the 2024 report titled “Informal K12 Computer Science Learning in Duluth.”

The Informal K12 Computer Science Learning in Duluth report is a collaboration among Northern Lights staff, members of the CSforALL Accelerator program, and community leaders in Duluth. Research for the report began in September 2023 with the goal of documenting and analyzing informal Computer Science (CS) learning in Duluth, aiming to raise awareness, foster community connections, and serve as a resource for existing programs. The 2024 report’s lead author is Paul Schonfeld of the Northern Lights Collaborative, with co-authors Jennifer Rosato and Justin Cannady.

On February 22, a total of 20 participants representing 13 youth-serving organizations gathered at the College of St. Scholastica in Duluth to discuss the report and guide next steps for the project. Guest speaker Emily Saed, director of the MN STEM Ecosystem, presented about the purpose, current projects, and goals for the organization. Participants at the event discussed topics related to the report and recorded ideas on paper to help inform next steps for the project. A summary of the discussions is captured below:

How to gauge participation in computer science

Participants shared ideas of collecting data about CS participation at events like Duluth’s Unity in the Community Event, FIRST robotics events, the Duluth Air Show, youth conferences, or business exposition events. Several organizations highlighted in the report have successful strategies for collecting data about student participation and could be modeled for future efforts. A few model organizations that collect data about participation include STARBASE, Duluth Public Library, and Duluth Public Schools.

How to identify and prevent barriers to participation

Discussions highlighted the need to address transportation challenges for youth to participate in informal CS learning offerings, especially for lower-income populations. Offering CS to all students during school time can help make it more accessible. There are opportunities to integrate CS with other areas including music, art, and as a part of lunch or clubs to help increase participation and help students realize the relevance of CS and how it can be used in creative and useful ways in a variety of contexts.

Desired professional development opportunities

Participants noted that they would like to see professional development offerings that help staff members and volunteers get started with some of the basics of CS, including education around what CS is and introductory experiences to help staff gain confidence. Having time to experiment with CS products would be a helpful component of PD. PD that involves connections to math or other subject-area learning targets would be helpful. Community Education programs may be an avenue for professional development for the broader community.

Visions or hopes for collaborations

75 percent of attendees who responded to a post-event survey on February 22 indicated that they would prioritize the report recommendation to “facilitate collaboration among organizations.” Other visions and hopes from discussions included inviting youth and industry leaders to future events and organizing a lending library that could include tools, resources, and materials from the various organizations in attendance. The second priority of survey respondents was to address geographic and transportation challenges faced by youth participants (56 percent or respondents said this was a priority).

Which report recommendations do you think we should prioritize?

Figure 1: Recommendation priorities: Event participants highlighted continued collaboration and addressing transportation challenges as areas of focus to be prioritized for this project.

The mission of the Northern Lights Collaborative for Computing Education is to develop evidence-based programs and resources in collaboration with educators and partners that support inclusive K-16 computing education. Northern Lights is coordinating with participants from the February event to help organize more events that support inclusive and equitable computer science learning. The next event for this project will be held in May.

Please email District Support Coordinator, Paul Schonfeld at schon172@umn.edu for more information about this project and report.

Evaluating student learning beyond the basics

December 13, 2023

Educational leaders across the country are catching on to the idea that traditional grading practices and standardized tests do not adequately capture the scope of what young people know and can do. With funding from The Civic Affairs Trust, education researchers at the University of Minnesota have developed two resources to rethink and improve the evaluation of student learning in schools.

“Academic learning isn’t the only outcome of a public education that matters to families and communities,” says Sara Kemper, Research Associate at the UMN Center for Applied Research and Educational Improvement (CAREI). “By the time they graduate, we want our young people to be able to navigate college and the workplace, solve complex problems, and contribute to their communities, among other skills.”

Beyond the Basics: Lessons from Innovative Schools on Evaluating Student Learning identifies ways to evaluate student learning that more thoroughly reflect the breadth and specificity of learning outcomes that our society expects from schools, and that students want for themselves. Kemper and her co-authors looked at case studies of five U.S. schools and districts currently implementing innovative student evaluation systems. A companion guide, Evaluating Student Learning “Beyond the Basics” is intended for PreK-12 leaders interested in exploring innovative approaches to evaluating student learning. Specifically, it identifies practices in evaluating learning beyond academics, including career readiness skills, social and emotional competencies, and other important outcomes.

For more information and to access the resources, visit carei.umn.edu/beyond-the-basics.

About CAREI — The Center for Applied Research and Educational Improvement (CAREI) is a research center within the University of Minnesota – Twin Cities College of Education and Human Development that serves as the link between research and practice in Minnesota schools, PreK-16, and other agencies interested in applied educational research. They are experts in research, evaluation, literacy, and assessment with a wealth of diverse and interrelated experience.

Contact: Sara Kemper, Research Associate, CAREI | 612-624-7235 | skemper@umn.edu

From CEED: How storytelling boosts our executive functioning: a Q & A with Chris Wing

November 21, 2023

Chris Wing, PhD ’13, CCC-SLP, built on her career as a speech-language pathologist by pursuing a PhD in language development. She is currently developing a preschool curriculum that emphasizes communication. The curriculum was commissioned by The Family Partnership, a Minnesota nonprofit that provides early childhood education as well as mental health, home visiting, and other services. Wing is working with CEED evaluators Alyssa Meuwissen, PhD, and Mary McEathron, PhD, to evaluate the effectiveness of the curriculum, which is being piloted in preschool classrooms as well as in home visiting and parent education programs. In this Q & A, Wing shares information about the curriculum and about the science underlying its storytelling content.

What motivated you to pause your career and return to graduate school?

CW: I had been working with a population of young children at extremely high risk for speech and language delays. I observed that when we addressed these children’s communication needs, they were changing in ways that were not considered to be directly related to communication. I saw changes in self-regulation and executive functioning skills. I wasn’t familiar with how that worked. It moved me back to school for my PhD in speech-language-hearing science.

My total focus was to understand the relationship between overall development and communication. I had to merge separate sets of academic literature related to infant mental health and communication.

How is infant mental health related to language development?

Speech and language, attachment relationships, and executive functioning are all connected. Research shows that the ability to use internal state language is predictive of executive functioning. Internal state language is a speech pathology term. It refers to language like, “I wonder how you are feeling,” or, “I can see by the look on your face that you might be afraid.” In the infant mental health literature they call it “mind-mindedness”–being mindful of the child’s mental state.

In my research for my PhD, I found wonderful and fascinating information about how attachment is transmitted from caregiver to child. Parents with good executive functioning create secure relationships and are using this kind of language. The good news is that when we address children’s speech and language needs, we get spread across areas of child development that impact attachment and behavior.

How did the storytelling curriculum that you are designing come about?

John Till is senior vice president of strategy and innovation at The Family Partnership. He learned about the importance of executive functioning and self-regulation. He also learned about the need to develop a two-generation approach to strengthen these skills. We agreed that I would create a communication-based curriculum for both parents and children with personal storytelling as a key strategy. I wanted to get that process down to a concrete level: what does it look like? What does it sound like? What are the steps involved in helping children develop these skills?

The preschool storytelling curriculum is designed for direct delivery to children and also for parents to deliver to children. So one version is to be administered by preschool or child care teachers. The other version is to be used with parents either one-on-one in a home visiting context or in a group setting.

Often, the parents themselves have not had many opportunities to work on developing their own communication and self-regulation skills. We’ve actually gotten some data in from a pilot where we’re having home visitors listen to the parent’s narrative and prompt them with questions like “Who was there? When did it happen? Was there a problem? Was the problem solved? What was the sequence of events?” We saw changes in the parents in terms of how coherent their storytelling was. These skills don’t just happen on their own. They result from participating in interactions and from what we call scaffolding. Scaffolding means building on what they already know.

How does the curriculum build storytelling skills?

One of the major strategies is called “Telling My Story.” We don’t ask children to retell a story that they learned from a book or at school, such as a folk tale. Instead, we ask them to tell a story about their lives. In the academic literature, this is known as a personal narrative.

To determine the child’s skill level, we use a protocol where an adult shares an experience that involves getting sick or hurt. The adult then asks the children to share a similar experience. We’re not trying to upset them by asking about times when they got sick or hurt. We ask about these events because they have what we call emotional salience. Kids are at the top of their skill level when talking about these events. They show us everything they’ve got in terms of storytelling. That’s why sharing a story about a negative experience is part of the assessment process. But of course, the curriculum is not just about bringing up bad experiences. Throughout the curriculum, children have many opportunities to tell stories about a variety of events.

We help them tell their story by asking questions. We talk about words for physical states like hunger. We ask, “What were you thinking at the time?” Parents who really form secure attachments are conscious of their child’s mental state; they’re checking in and mirroring that.

After children finish telling their story, if they haven’t told us already, we ask, “How did you feel?” We ask this of both kids and adults. Some research shows that most of us adults really struggle with naming a feeling outside of some pretty concrete ones: happy, sad, afraid. We don’t get much better than that.

I recently went to a live recording of The Moth Radio Hour. Ten people told stories, and I was amazed at how few internal state words they used. To me, those are what connects us. I can’t really relate to the experience of someone who set a Guinness World Record canoeing on the Mississippi, but I can relate to how it made them feel. When we are able to name feelings, that ability correlates with emotional intelligence. So as parents practice naming their own and others’ feelings, that impacts their ability to engage with their kids.

A favorite definition of self-regulation I ran across that dovetails with what we’re trying to accomplish is, “Self-regulation is monitoring your internal states in relation to your external objective.” The regulating part comes in adjusting either your internal state or your external objective so that you have a match.

Our adult curriculum asks parents to tell their own story. It’s an opportunity to reflect, to problem solve, to process their internal state. With adults, we always end with an affirmation. We recognize something in their story that creates something coherent out of what can feel like chaos–many parents’ lives are chaotic. What we find in adult research on this kind of telling is that the important thing is not whether the storyteller felt successful in the story–it’s how they process it after the fact and see their own agency and what can be built on.

Your curriculum is currently being piloted. How is it going?

The curriculum is being simultaneously written, revised, and piloted. The original version was a six- to eight-week curriculum. Stakeholders gave us wonderful but sometimes painful feedback on that draft. One message that came through is that it needed to be a nine-month curriculum. The new version will last 30 weeks.

We did a “baby” pilot of the new version and found it was headed in the right direction. We were very encouraged, so we began our scheduled pilots at the beginning of the school year with 10 weeks of the curriculum complete. Now I’m writing ahead of the pilot. It feels like running in front of a speeding train, but there’s something about the content that has its own calming, mindful effect. Teachers have even said that the kids are being kinder to each other. One thing I like is hearing from teachers, “I like doing this. It’s fun. The kids like it.” That means it’s developmentally appropriate. We know neurologically that positive engagement facilitates learning. Fun is not optional; fun is mandatory!

From CEED: CEED, Department of Applied Economics win $1.4 million federal grant for study of child care assistance

November 13, 2023

Researchers at the Center for Early Education and Development (CEED) and the Department of Applied Economics were awarded a $1.4 million grant for Coordinated Evaluation of Minnesota’s Child Care Assistance Payment Policies, a research project evaluating child care subsidies in Minnesota. The grant for the four-year project was awarded by the Office of Planning, Research, and Evaluation in the Administration for Children and Families, U.S. Department of Health and Human Services. Co-principal investigators Ann Bailey, PhD, director of CEED, and Elizabeth E. Davis, PhD, professor of applied economics, will lead the project to measure the effects of child care subsidy policies on families’ access to high quality child care.

Minnesota’s Child Care Assistance Program (CCAP) provides subsidies to low-income families with funding from the federal Child Care and Development Fund. About 30,000 children and 15,000 families receive child care assistance each month in Minnesota through CCAP. The purpose of the Child Care and Development Fund is to ensure that families who receive child care assistance have “equal access to child care services comparable to those provided to families not eligible” for such assistance. Having equal access means that families should be able to find care that meets several criteria. It should be:

Reasonably affordable
Reasonably convenient in terms of hours of operation and location
High quality; i.e., supportive of child development

“Quality child care opens doors to employment, education, and training for parents. It also supports children’s healthy growth and academic achievement,” says Bailey. “Its importance to the functioning of our society and our economy, as well as to individual opportunity, can’t be overstated. Yet so many families have a tough time finding quality child care that they can afford. That’s especially true for our communities of color, immigrant communities, and rural communities. CCAP is designed to address that issue.”

Since 2014, Minnesota’s Department of Human Services has made several major updates to CCAP. These updates create natural experimental conditions, representing an opportunity to evaluate CCAP’s impact before and after implementation of the changes. Bailey, Davis, and their research team will look primarily at changes to subsidy payment rates. Other policies of interest include family copays, payment for enrollment versus attendance, speed of payment, and the administrative burden of participation.

The researchers will partner with Minnesota’s Department of Human Services to compile and analyze data related to families who enroll in CCAP, such as demographic and geographic information. They will model the number of families eligible for CCAP and compare that with participation rates and county-level waitlists. They will also look at providers’ participation in CCAP as well as their participation and rating in Parent Aware, Minnesota’s voluntary child care quality rating and improvement system. In addition, the research team plans to measure CCAP’s effects on parents’ employment and children’s school success.

The project will also include a large-scale qualitative study. The researchers will survey and interview providers and families who participated in CCAP as well as those who did not. This will allow for a better understanding of how policies influence providers’ decisions to accept subsidies and families’ decisions to obtain subsidies. It will also shed light on families’ decision-making process as they choose providers.

“We believe that our evaluation methodology will result in actionable findings for Minnesota and for other states as well,” says Davis. “For example, some states use a market price approach to setting subsidy payment rates. Other states use a cost modeling approach. Our study will determine how an increase in payment rates affects families’ access to care regardless of the approach used to set rates. There is so much to learn about the policy levers that states can use to maximize the effectiveness of programs like CCAP.”

In addition to Bailey and Davis, the project team will include Jonathan Borowsky, JD, PhD (Department of Applied Economics); Alyssa S. Meuwissen, PhD (CEED); Mary McEathron, PhD (CEED); Meredith Reese (CEED); Aaron Sojourner, PhD (W.E. Upjohn Institute for Employment Research); and Barbara Vang (CEED).

Meet Ozge Metin Aslan, CDLS Visiting Research Scholar

November 7, 2023

The Child Development Laboratory School is hosting its first Visiting Research Scholar through summer of 2024. Ozge Metin Aslan (she/her/hers) will be observing, studying, and collaborating on research projects with CDLS and will also guest teach.

Her educational background includes a PhD, MS and BA all in Early Childhood Education from Hacettepe University in Ankara, Turkey. During her PhD, she was a research scholar at the Institute of Child Development in Dr. Nicki Crick’s Social Lab from 2011-2012. She completed her postdoctoral research on shy and introverted children’s play behavior and peer relations with Dr. Kenneth H. Rubin at the University of Maryland’s Center for Children, Relationships and Culture between 2014-2016.

Here is a brief bio from Ozge:

I am a play researcher and also a free play activist. I believe that free play is the only way for learning and exploring. I have three sentences that I always mention in my class: “Children are learning by themself.” “Children are smarter than we think.” “We need not go down to the level of children, instead we must go up to the level of children.” My teaching philosophy is based on all children have the potential to and are capable of constructing their own understandings and learning. It is my responsibility to train teachers according to this philosophy.

My project Play for the Planet: Supporting Creativity and Sustainability in Early Childhood Education has been selected for the 2023 Education for Sustainable Development Award from World OMEP “World Organization for Early Childhood Education”. It is based on playwork and loose part materials. I have Persona Dolls Training Certificate and Forest Education Training Certificate.

Welcome Ozge!

CDLS Director Sheila Williams Ridge participates in Stanford’s Climate and Young Children webinar

October 25, 2023

Dr. Sheila Williams Ridge, director of the Child Development Laboratory School, recently participated in a webinar on Climate and Young Children presented by the Stanford Center on Early Childhood. The webinar brought together leading voices from early childhood education, policy, and research to illuminate how climate change and extreme weather impacts young children, families, and communities.

The other speakers in the webinar included:

Christy Merrick, Director of the Natural Start Alliance
Antwanye Ford, Co-Chair of the Early Years Climate Action Task Force
Nat Kendall-Taylor, CEO at the FrameWorks Institute
Laura Schifter, Harvard Graduate School of Education Lecturer and Senior Fellow at the Aspen Institute
Moderator Abigail Stewart-Kahn, Managing Director of the Stanford Center on Early Childhood

A main focus of the webinar was empowering children, families, and educators to explore solutions to the growing challenges of climate change. Williams Ridge shared how nature-based learning environments, such as the CDLS, promote children developing relationships with the world around them from a young age.

“What we really want to do is help children learn those early skills, like inquiry…problem solving and creativity,” Williams Ridge said during the webinar. “We want them to think of themselves as having the ability to do things to solve problems. We do that in their relationships with other young children, we want to do that when we’re talking about the climate. One of the best ways we can do that as adults, and really take our responsibility seriously, is to model those practices.”

You can find more about the webinar series, including resources and action items, here.

Watch the webinar below.

From CEED: How to support children’s development with storytelling

October 17, 2023

Maybe it’s the end of your workday and you’re picking up your young child from preschool. As you buckle her into her car seat, she starts telling you about something that happened on the playground. The order of events is hard to follow; plus, your mind is already on what to make for dinner. The most you can do is reply to her with an occasional, absent-minded “uh-huh” as you drive home.

Or maybe you’re a preschool teacher with 11 very active children running in literal circles around the room. Meanwhile, a twelfth preschooler chooses that moment to tell you a complicated story about his dog. Or is it his toy dog? Some of the basic elements just aren’t clear. You smile and nod, then rush to herd the rest of the class over to their carpet squares for morning meeting while the preschooler continues to narrate, apparently to himself.

Do these scenarios sound familiar? When we adults are feeling frazzled, it can be next to impossible to tune in to the stories that young children tell. But did you know that when children share stories about their lives–called personal narratives–they are doing important learning? When we engage with those personal narratives, we’re helping them grow.

Woman with two children on moss-covered bench overlooking a ravine and a railroad bridge — Photo by Benjamin Manley on Unsplash

Children’s stories do more than simply inform us about how they spend their days. Telling stories promotes children’s language development, along with their executive functioning. Executive functioning refers to the set of skills that allow us to control our behavior rather than acting on impulse. Following multi-part directions or working toward a goal are examples of skills that require executive functioning. So is refraining from an impulsive action that could cause harm or get us into trouble, such hitting a friend or yelling in the classroom.

So, why does storytelling affect executive functioning? It turns out that language development and executive functioning are related. Chris Wing, PhD ’13, CCC-SLP, is a speech-language pathologist who has researched that connection. She has found that as we help children work on their communication skills, their executive functioning also improves. There is also evidence that learning to use the vocabulary of emotions and states of mind correlates with the ability to self-regulate. Self-regulation–recognizing our emotions and keeping them in check when we need to–is an important aspect of executive functioning.

“When I talk with kindergarten teachers,” Wing says, “They often tell me, ‘I don’t care if incoming kindergarteners know how to read or know their numbers. I want children to be able to attend, get along with their classmates, and relate to me as a new adult.’ What they are saying is they want children to have learned executive functioning and self-regulation skills.”

Wing believes that storytelling is a great way for young children to work on those skills. That’s why The Family Partnership commissioned Wing to create a preschool curriculum that includes storytelling. The Family Partnership is a Minnesota nonprofit that provides early childhood education along with mental health and other services. Want to make storytelling part of your everyday routine and help children get the most benefit from it? Here are pointers based on the curriculum that Wing developed:

Model storytelling for them by telling a simple story about your day: “Guess what happened to me in line at the grocery store! It was really funny.”
Tell a story with a child or children as a shared event. Start with a question: “Remember when we set up the bird feeder outside our classroom window? Who wants to share what happened next?” Then take turns adding details.
Meet the child where they are. We often ask children lots of questions about events or aspects of their day that we adults are curious about. If these are not the topics that most interest them, though, children likely won’t be as eager to tell about them. Try letting children direct the conversation and share what’s most meaningful to them.
It takes practice to provide the “who, what, where” context that a listener needs. If the child’s story is hard to follow or missing important details, ask questions to fill in the blanks: “Great story! Tell me, what happened first?” Ask about when and where the story occurred, who was there, and what the sequence of events was.
The most important question in Wing’s storytelling curriculum is: “How did you feel?” Try to help children describe how they felt physically and emotionally at the time of the story. Prompt them with words like excited, silly, frustrated, tired, surprised, and hungry.
It’s okay to have big feelings! Storytelling can be a way to work through our thoughts and feelings about negative events. Naming our feelings is an important part of self-regulation, and self-regulation is a major factor in resilience.
Have fun with it! Be as silly or as dramatic as you want. Maybe you want to act out what happened. Maybe you want to tell the story in silly voices. Research shows that positive engagement facilitates learning.

Storytelling doesn’t need to happen at a particular time of day. You don’t need any special materials to do it. And there’s no cleanup required! Storytelling is a simple activity that goes straight to the heart of some of the most important things children need to learn, like language and self-regulation. The next time a preschooler in your life starts telling you the saga of finding a feather on the playground or getting into an argument with a friend, see if you can give them your full attention. (If you’re that preschool teacher with a wild roomful of four-year-olds, it’s okay to ask your little storyteller to hold that thought and connect with him later!) Experiment with some of Wing’s strategies. You might just get inspired to share a personal narrative of your own. What stories do you have to tell?

From CEED: NEW! Part two in our Tip Sheet series on Authentic Assessment

October 17, 2023

Authentic Assessment is recommended practice for early childhood educators. It lets them see the big picture of a child’s development. The Authentic Assessment Cycle helps educators get a sense of the skills that the child has acquired and what they have learned. It also helps educators adjust their lesson plans to support children’s progress. (Learn more about how the Authentic Assessment Cycle works in our first Tip Sheet in the series.)

Educators also need to know whether a child is gaining skills and knowledge at a rate that’s typical for their age. To know that, they need to compare the child’s development with a set of guidelines. Our second Tip Sheet in our Authentic Assessment series is called Introducting It: Using the Early Learning Guidelines to Track Development for Assessment. It talks about two different sets of guidelines that educators can refer to: developmental milestones and Early Childhood Indicators of Progress (ECIPs). The Centers for Disease Control and Prevention offer information on developmental milestones. The ECIPs, meanwhile, are from the Minnesota Department of Education. They describe what children should know and be able to do by the time they enter kindergarten.

FINAL Tip Sheet_Early Learning Guidelines (Theory) 9.19.23 Download

Make sure to check out all of our Tip Sheets! Do you have feedback for us, or an idea for a topic you’d like to see explored in a Tip Sheet? Email us!

Success, in smaller steps

September 21, 2023

ICI alum Teri Wallace dropped by the Institute recently to help celebrate the 35th anniversary of Impact magazine.

“It felt like being home,” said Wallace, now the interim associate vice president for research and dean of the extended campus at Minnesota State University, Mankato. “I spent my years with ICI in Pattee Hall, so the structure is of course very different, but the people and the feeling were the same, and I only wish I had more time to sit and reconnect with colleagues.”

Wallace worked at ICI from its earliest days in the late 1980s until 2010, when she left for Mankato to serve as a professor of special education. Starting as a graduate research assistant at ICI, she held a variety of positions, including principal investigator and assistant director.

Today, she’s working on improving Minnesota State Mankato’s transfer system. Last year, for example, the school signed a collaborative agreement with Riverland Community College that helps associate’s degree holders from Riverland to go on to complete their bachelor’s degrees online at Minnesota State. Distance-learning and other flexible options are critical for community college students looking to further their careers, she said, because they are often tied to their current communities due to family and other obligations.

“Last year, we created a university-wide work group to focus on improving our transfer work, and this year I’m working with our newly established transfer operations group and an advisory body to implement the group’s recommendations. It’s very important work for many reasons and it’s a good fit for me because I truly believe in education’s power to transform lives. There are many paths to achieve educational goals and ease of transfer can be an important factor.”

She also serves on Minnesota State’s President’s Commission on Diversity and received the group’s Diversity Champion award in 2019.

“That year I was interim associate vice president for undergraduate education. We changed policies, added academic supports, expanded the first-year experience and learning communities, and all of this lead to increased retention and student success. This work was influenced by perspectives I gained from ICI,” she said of the diversity, equity, and inclusion work. “We want paths forward for everyone, but everyone is in need of a little something different to get there.”

The following year, she served as interim provost and vice president of academic and student affairs for Southwest Minnesota State University in Marshall, before returning to Mankato.

If there’s one thing she’s missing today, Wallace said, it’s working directly with students.

“My goal has always been to help students achieve their goals, and as I approach the end of my career, I’ll return to the faculty to do just that,” she said. “For now, I’m focused on growing our research infrastructure, expanding our partnerships with industry and 2-year colleges, enhancing our transfer supports, and extending our continuing education programs and certificates, which help people take smaller steps to get where they want to go. When we accept students, it’s incumbent on us to help them succeed, and that core belief evolved from my years at ICI, too.”

Identifying autism in Rwanda

September 21, 2023

A village meeting of autism acceptance advocates and community health workers in rural Rwanda in July 2023.

The Institute on Community Integration this summer trained community health workers in Rwanda on identifying the signs of autism in children and on principles for addressing the needs of people with disabilities in rural communities. The work was done in July under a College of Education and Human Development Global Signature Grant.

ICI’s Macdonald Metzger partnered with Autisme Rwanda on the four-day session. Community health workers are the first line of contact for many parents with young children with autism and other disabilities, Metzger said. Staff members from Autisme Rwanda also participated in the training.

“The stigma around autism is the same in Rwanda as it is in many African countries where ICI has provided education and training in recent years,” Metzger said. “With any disability, parents are still often hiding their children in their homes because if they were more visible, they would be excluded from their communities. There is still a priority placed on children without disabilities because they are seen as future providers for the family.”

Part of the work included sharing the principles of community-based rehabilitation, a development strategy created by the World Health Organization that involves people with disabilities, their families, organizations, and other community stakeholders in building local resources to provide community services. Participants also learned how to use Autisme Rwanda’s new mobile app as an autism screening tool.

“Here in Rwanda, we have many kids and adults with autism,” said Rosine Duquesne Kamagaju, founder of Autisme Rwanda. “My hope is that news of this training will spread, and that doctors, teachers, and community health workers will ask for help in caring for them so that they have the opportunity to have a job and a future.”

Including the broader picture of disability from a community development perspective helped put the screening tool training into a useful context for participants, said Pacifique Ndishimye, a research scientist who has served the organization as an advisor.

The screening tool also has functionality that will allow health workers to better track numbers of children with autism, an important factor in acquiring more disability resources, Kamagaju said.

Rwanda established a community health worker program in 1995 to help rebuild its healthcare system after the genocide that killed more than 800,000 people, embedding teams of workers in every village that included maternal and child health education and support.

“They are truly the frontline of healthcare here, and this training will help them in identifying and linking individuals with disabilities to healthcare,” Ndishimye said. “It will also help them provide basic disability-related community health education and counseling.”

Prevalence: Extending ICI’s research

September 21, 2023

Researchers at the Institute on Community Integration are extending their methodologies used in reporting autism prevalence to unlock critical information about cerebral palsy, spina bifida, and muscular dystrophy.

Partnering with Gillette Children’s, a global cerebral palsy research center, the Minnesota-Autism and Developmental Disabilities Monitoring Network (MN-ADDM) team at ICI over the next year will provide surveillance estimates of cerebral palsy in Hennepin, Ramsey, and Anoka counties, which account for nearly 40 percent of the state’s population. The work is part of the Centers for Disease Control’s network of surveillance sites tracking the number and characteristics of children with autism spectrum disorder and other developmental disabilities. Minnesota is one of five states also tracking cerebral palsy prevalence.

“This work will help policymakers allocate resources, better understand the public health needs of families in Minnesota, and improve public awareness and early intervention of cerebral palsy,” said Jennifer Hall-Lande, who leads the Institute’s autism research and serves as principal investigator for the expanded prevalence work.

Under a separate agreement with the CDC, ICI investigators are working to estimate prevalence of spina bifida and muscular dystrophy.

“We’re excited about this work and its potential applications for other populations,” said Julie Bershadsky, director of ICI’s community living and employment focus area. “The latest project to estimate spina bifida prevalence in the United States uses administrative claims data, a promising and cost-effective methodology.”

Another important piece of the new work involves collecting and analyzing personal characteristics of people identified with different disability types, said Libby Hallas, an ICI coordinator working across the different prevalence projects.

“Age, gender, race, ethnicity, co-occurring conditions, and other characteristics help researchers untangle just who is affected and how many, so we can plan for services to meet their needs,” said Hallas.

The ICI team looking at the cerebral palsy data includes Katrina Simons (pictured), an ICI community program specialist who lives with cerebral palsy.

“Prevalence isn’t just about knowing how many people live with a certain disorder; it’s about making sure people who do live with a disorder are able to access the supports that work best for them, so I’m hoping we can move more in that direction as we do this work,” she said. “Knowing there are others out there can make it a little easier to ask for help.”

Oct. 3 Forum: How facility bias affects people with disabilities

September 21, 2023

Promotion about the 10/3/23 Policy Forum, showing part of the cover of Policy Research Brief, 30(2).

Heidi Hamilton, disability services director for the Minnesota Department of Human Services, and Michael Gamel-McCormick, disability policy director for the U.S. Senate Special Committee on Aging, will join researchers at the Institute on Community Integration and others at an Oct. 3 online public forum exploring how disparities in funding for services affects people with disabilities.

The policy forum, Institutional Bias in Long-Term Services and Supports for People with IDD, will be a live discussion of issues raised in a recent ICI Policy Research Brief. The brief recommends policymakers eliminate the funding advantage that intermediate care facilities have as Medicaid entitlements, placing home- and community-based (HCBS) services on equal footing. The brief also calls for enforcing all provisions of the 2014 Medicaid HCBS Rule to promote person-centered services and individual choice, among other recommendations.

“With recent developments in HCBS funding and workforce shortages, it is especially important now not to lose sight of the gains made as people with disabilities moved out of institutions and into community settings where they have much more control over their daily lives,” said Julie Bershadsky, director of ICI’s community living and employment focus area. “This brief explains the roots of the bias toward institutional care, and we are excited for the discussion with key stakeholders it will generate in the policy forum.”

ICI’s Brian Begin, Agnes Cole (MNLEND 2022-23), and Sheryl Larson served as editors of the research brief.

“It struck us as odd that while people with disabilities have better outcomes and prefer home- and community-based services, only services performed in institutions and intermediate care facilities are federally mandated,” Begin said.

Cole, founder of the Disability Motivational Network , helped create the policy brief as part of her MNLEND fellowship at ICI. She said she was moved to work on this particular project after seeing the large number of people on waiting lists to have their services delivered at home.

“We need to allow family members to take care of their loved ones, and many are not even aware of their options,” she said.

The research data comes from ICI’s Residential Information Systems Project (RISP), a longitudinal study of living arrangements for people with intellectual or developmental disabilities who get long-term supports and services. The project tracks detailed information about the places people with disabilities live, including large institutions, intermediate care facilities, and group homes.

“While states are not allowed to have waiting lists for services provided in Medicaid institutions, most states have waiting lists for home or community-based supports and services. In some states those waiting lists are very long,” said Larson, who directs the long-running project. “With more than 900,000 people getting Home and Community Based Services compared to fewer than 70,000 people in Medicaid-funded institutions, HCBS services are clearly preferred.”

From CEED: NEW! Tip Sheet on Authentic Assessment

September 19, 2023

Our new evidence-based Tip Sheets explore topics of relevance to early childhood professionals. Our latest Tip Sheet, Introducing It: The Authentic Assessment Cycle and Its Role in Early Childhood Education, is the first of a planned series exploring aspects of Authentic Assessment.

Authentic Assessment is recommended practice because it allows educators to gain a holistic picture of a child’s development. The data compiled through Authentic Assessment is used to adjust instruction and even to make changes to the child’s environment. Download Introducing It: The Authentic Assessment Cycle and Its Role in Early Childhood Education below, and learn about:

Characteristics of Authentic Assessment
Steps in the Authentic Assessment cycle
The role of implicit bias in Authentic Assessment
And more!

Tip Sheet_Authentic Assessment 1 (Theory) 9.13.2023 Download

Make sure to check out our other Tip Sheets! Have feedback to share or an idea for a topic you’d like to see covered in a Tip Sheet? Email us!

From CEED: A passion for sharing knowledge: a Q & A with Program/Project Specialist Barbara Vang

August 28, 2023

In our latest staff Q & A, Project Specialist Barbara Vang discusses her passion for supporting others as they develop skills, abilities, and knowledge. She also shares her thoughts on the way a shared desire to learn can transcend language barriers and lead to magical classroom connections.

Barbara Vang in traditional Hmong dress at a table covered with flowers, food and drinks in a sunny field of wildflowers

What was the career path that led you to your current role at CEED?

I graduated from UMN in 2010 with a bachelor of science degree in sales and marketing as well as human resource development. I had a high interest in training and development. After graduating, I spent five years in Seoul, South Korea, teaching English as a foreign language in suburban public elementary schools.

What I missed while in Korea was my family and community. Looking back, when I left Minnesota, my grandpa said, “Don’t grow flowers outside your home.” My grandparents are Hmong; there’s no country that they can say they come from. So, where do I plant my roots? I knew I wanted to start my own family and what my grandfather said resonated. I realized I wanted to plant my flowers here in Minnesota.

To make my transition back into the American workforce, I discovered Americorps and joined the Community Technology Empowerment Project as a digital literacy advocate through the Saint Paul Neighborhood Network. I taught 20 classes a week in computer literacy and English as a second language (ESL) to adult refugee participants through the Hmong-American Partnership, which is centrally located for the Somali, Karen, and Hmong communities. The oldest people I worked with were in their 70s or 80s, and the youngest were probably 18. My grandparents don’t speak English or use computers, so it was easy to relate to the people in my classes. I was also reminded of teaching Korean students, because everyone was learning English. The Karen and Hmong had a shared understanding of Thai because of time spent in refugee camps, but even with language barriers, students connected because they were all seeking the same skills in English and computer literacy.

I noticed that once a light bulb turns on for one student, it’s a ripple effect: everyone else’s light bulbs go on. Those were my favorite moments of teaching. That’s why I have a passion for sharing knowledge.

After my time with Americorps, to maintain my service to the community and Minnesota, I worked in the training spaces of a couple of agencies within the State of Minnesota. In my last position, I was responsible for coordinating the Minnesota Department of Transportation’s leadership development program. I also facilitated and consulted for their workforce development units.

What does your role at CEED entail?

I provide technical and other project support in all aspects of the department’s work. I’m on the path to becoming a learning management system (LMS) administrator. Canvas is the LMS that we use, so my job will include building out Canvas sites for our online courses, self-study modules, and other training we create and offer. My job supports almost every project we have at CEED, so I am able to use different skills and abilities for each of the different projects.

What is new for you in your work at CEED?

Not being an instructor is new for me. This is another pivot moment in my career. Right now, I’m saving my teaching for my kids. Teaching definitely prepared me for motherhood; it gave me patience. Like being a parent, being a facilitator is exhausting. You hear stories, go home with them, and say to yourself, “How can I help my student find a path through this transition in their life?” My kindergarten-age daughter is constantly asking questions and learning every day. So is our little puppy! And a few months ago, our son joined our family too. So all my teacher energy is going into my family.

Additionally, this role offers me the opportunity to work on online courses at a higher tier than what I’ve done previously. I’ve used various learning management programs at different agencies and I’ve played with Google classrooms on my own as a volunteer ESL teacher, but my background is more in uploading materials and managing registration and tuition. I’m excited to get involved in designing e-learning.

What are you most looking forward to in your role?

One thing that I’m looking forward to is working with new software. Another is managing the student experience. During the pandemic, I did Zoom producing for online instruction. I enjoyed being on the sidelines and watching how classrooms operated and interactions flowed. I also enjoyed being able to step in and offer technical help. So I’m looking forward to being an advocate for students when they need help to answer questions from “How do I reset my password?” to “Do I need this course?”

I love being online. That’s where I’ve always wanted to be—it’s where my brain is. I’m always trying to push for efficiency and convenience and whatever will make life easier. When the pandemic hit, it was simple to match all my interests up together—putting together my passion for human development with that interest in ease of access.

What are some of your interests and hobbies outside of work?

I enjoy cross stitching Hmong tapestry (paj ntaub) and building Lego sets. I started with the intention of building Legos together with my daughter, but it ended up being “mommy time”—and when I’m done building, she can take my sets apart and play with them! I also love traveling with my husband and our family. Our favorite family destination is Walt Disney World. We hope to visit the world’s six Disneyland parks in the future.

From CEED: “We’re co-learners asking questions together”: a Q & A with Implementation Specialist Molly Hughes

August 18, 2023

Molly Hughes joined CEED in April 2023 and divides her efforts between our Early Childhood Program Quality work and the Trainer and RBPD Specialist Support (TARSS) program. In this Q & A, she shares her thoughts on the power of relationships to support learning and professional growth.

What is the educational or career path that brought you to CEED?

I studied biology for my undergraduate degree. After college, I nannied for a family with triplets. When the triplets went to preschool, I needed a new adventure so I started my own business as a family child care provider. I ran that program for 22 years. During that time, I earned my master’s in early childhood from Concordia University and I became a trainer as well.

I closed my child care program because of competing responsibilities. Child care providers are sometimes in a position where they are not sure they can continue, often due to burnout. On the other hand, they are reluctant to step away because they know there is a severe shortage of care. For me, the tipping point came when I felt I could no longer be reliable for the families that my program served, because I occasionally had to close in order to care for elderly family members.

When this role opened at CEED, I knew it would be a good fit. I bring to the table decades of experience as a child care provider and trainer, so I can relate to and anticipate our audiences’ needs.

You mentioned becoming a trainer. Can you talk a little bit about what professional development looks like for child care providers?

Center-based and family child care providers are required to complete a certain amount of continuing education hours each year. Some trainings are fairly generic and cover important fundamentals, like active supervision, sudden unexpected infant death, and abusive head trauma. But beyond those basics, you are able to fill in your hours with things you choose.

I lucked out in becoming a trainer at a time when a lot of Training-of-Trainers (TOT) opportunities were being offered. TOTs prepare trainers to offer courses from the Department of Human Services. I got a lot of those under my belt. Then I started writing my own courses and delving into other topics. COVID also meant less demand for in-person training. So I decided to tilt my focus more towards course writing and trying to support providers, especially those who have been in the field for decades and are looking for something new and different.

What is your role at CEED?

My title is implementation specialist for the TARSS program. I also conduct CLASS™ observations and trainings and do field observations of Parent Aware coaches. I lead the trainer observation program for TARSS and co-lead our online learning community for RBPD specialists and our professional learning community for course writers. I gather data to determine the coaching needs for trainers and sometimes develop the content for those trainings. And I’m excited to say I’m organizing the TARSS Fall RBPD Retreat.

Those are a lot of different responsibilities! Is there a common thread that runs through them all?

The RBPD piece is the major common denominator. Whether I’m conducting a CLASS observation and sharing feedback with an educator, helping trainers access observations and coaching, or facilitating our online community for RBPD specialists, I am supporting early childhood professionals in improving their practice. This approach to professional development really complements traditional trainings because we know that often deeper learning occurs within the context of relationship-based professional development to which the learner is personally committed. The benefits flow from our work at CEED and in the TARSS program to the trainers, course writers, and RBPD specialists, and from there they flow to the educators, and finally they affect children and families. And that’s our ultimate goal: to benefit children and families.

What do RBPD specialists or coaches do for child care providers?

The goal of coaching for child care providers is to build a collaborative relationship that helps the provider choose an area that they want to develop. That could mean solving a problem. It could mean trying something new or gaining a new skill. The coach works with the provider to determine their goals and the area of growth they want to focus on. Then the coach supports them in figuring out how to get there.

Coaching is different from being a trainer conveying information to a trainee. The coach and the provider are sitting side-by-side. A coach doesn’t need to be the expert on everything–in fact, they can’t be. Instead, they have to be willing to dig in together with the provider as co-learners. A book I like on this subject is Coaching with Powerful Interactions. It gives key ideas about forming relationships, extending learning, and asking questions. Some of it feels very intuitive. These are definitely skills that coaches need to develop.

Research shows that coaching relationships can be more effective as professional development than training. Part of that is because once you’ve left a training, it’s on you to implement what you’ve learned. And although trainings can be inspiring, it’s not easy to retain that momentum on your own. With coaching, you decide what you want to change and improve. You have somebody to work with you, help you find resources, define action steps, listen to things that might get in the way of reaching your goals, help you problem-solve, and hold you accountable.

It really goes back to relationships. Think of teachers in your life who have made an impact on you. Often there is a solid relationship there. In my experience, the most effective training also makes use of relationships. People are often surprised to learn I am actually a shy introvert. I don’t like large groups; that’s not my jam. So, how am I up there, talking to a roomful of people? I can do it because to me, it’s a conversation. When I lead a training that becomes an authentic conversation, I come out of it full of energy. There’s that relationship thing again: connecting with people.

What would you like people to know about training and coaching for child care providers?

It’s crucial. Ultimately, the importance of training and coaching circles back to parallel process. Parallel process is a concept from reflective supervision that captures how a supervisor’s relationship with a frontline provider can play out in that provider’s relationship with the children or families they work with. We have to educate the educators in order for them to effectively educate children. When we take an RBPD-style approach to professional development for child care providers, we’re saying, “We’re co-learners. We’re asking questions together.” Parallel process means that providers establish the same pattern with children: “We’re letting children have a voice in what they want to learn and asking about what’s meaningful to them.”

What do you do for fun?

I read, hike, knit, and donate my knitted blankets. I read a little bit of everything. If someone hands me a book and says, “You should read this,” I’ll give it a try. I’m currently reading A Man Called Ove, and I’m in the middle of Outlander.

We love hiking in state parks and taking road trip vacations. The coolest was our trip to Washington and Oregon. We took two weeks and stopped and hiked every single day. My husband fishes, so over spring break we go to Kentucky which has really good state parks. Recently, we did six parks in three days. We did drive through Great Smoky Mountains National Park, but unfortunately it rained all day, and you couldn’t see the mountains. The ground was lovely, though!

Myhre hosts ICI celebration

August 16, 2023

Heidi Myhre (center) stands in front of a timeline of Impact articles and images with current and former ICI staff. On the left are Angela Amado (former ICI staff member) and ICI's current Director, Amy Hewitt. On the right are former ICI staff members Teri Wallace and Beth Fondell.

Heidi Myhre (pictured in the center with current and former ICI staff) this week welcomed guests of the Institute to a 35th anniversary celebration for Impact, ICI’s flagship publication, which advances the inclusion of people with disabilities in their communities of choice.

The celebration at the Masonic Institute for the Developing Brain included recollections from current and former ICI staffers, colleagues, and other friends of the organization who have contributed articles over the years.

“I vividly remember the first time I was asked to be an editor for an issue of Impact,” ICI Director Amy Hewitt (second from left) recalled at the celebration. “It was such an honor to be asked, and I felt it marked a turning point in my career.”

Myhre, a member of the Institute’s Self Advocate Action Committee, has served frequently as an Impact author. In the spring anniversary issue, she wrote an article about why the publication remains relevant.

“Impact was put together to educate about topics in intellectual and developmental disabilities, and for us to know we’re not alone. It brings new knowledge to people who don’t understand disability and to us as advocates and self-advocates, and to people all over the world,” she wrote. “Each issue is a little different, but it always tells a story and we learn something about why people with disabilities stand up for our rights and how we make a difference in the world.”

Myhre’s work with Impact, and ICI, has been insightful, said Janet Stewart, Impact’s managing editor.

“Heidi’s attention to detail in writing her articles has been impressive,” Stewart said. “She has a real knack for getting to the heart of an issue and engaging people around her to better understand an important issue.”

In addition to her work on the committee and with Impact, Myhre has participated in several ICI research and education projects. Recently, she and other self-advocates starred in a two-part video series, In Our Own Words: Improving Care for People with Disabilities , which focuses on communication tips and detailed suggestions for providing the most appropriate care settings for people with a variety of disabilities.

“I like doing those projects and seeing all the different angles,” she said of her advocacy work. “If providers take the training videos seriously, if they actually hear us, the training will help a lot of people. We can do all the training and have all the data in the world and a lot of people still don’t get it. We hope they’ll hear us, but they have to be willing to listen.”

Click here for a free print or online subscription to Impact.

She urged attendees at the Impact celebration to keep fighting for better wages and benefits for the direct support professionals providing services for people with disabilities.

“The system is broken, and we need a lot more workers just to help us get back to the basic services we need to live independently,” Myhre said. “We still have a lot of work to do.”

Review: From being to belonging

August 16, 2023

Higher expectations for the inclusion of people with disabilities in the social fabric of their communities are today being driven in large part by people with disabilities themselves, who are participating directly in disability research, a new review by Institute on Community Integration researchers shows.

Roger Stancliffe and Sarah Hall published “Social inclusion of adults with intellectual and developmental disabilities: Toward belonging” in the International Review of Research in Developmental Disabilities. The invited review is being made available for free until September 7 by the publisher, Elsevier.

The authors review participation in mainstream community activities across the lifespan of people with disabilities. Various settings and types of social relationships, including LGBTQ+ relationships and online dating are discussed. Aging, end-of-life issues, and retirement relationships are also included.

“The understanding and conceptualization of social inclusion has become richer in recent years, largely thanks to the involvement of people with disabilities in the research,” said Stancliffe, who is also professor emeritus at the University of Sydney. “We’re getting away from superficial participation headcounts and measuring time spent in certain environments, and we’re paying more attention to the subjective experience and whether people with disabilities actually feel connected, welcome, and safe enough to develop relationships in these settings. It’s no longer just about wandering through a shopping mall and passing a parade of strangers.”

Hall has devoted much of her career to studying and developing solutions to improve family and other relationships important to people with disabilities.

“We’re often so siloed in our disability topic areas of employment, education, transition, and others,” she said. “This project allowed us to group the different aspects of community life and show social inclusion as one, all-encompassing issue.”

Hall, who has an older brother with disabilities, focused on relationships from the very beginning of her research career.

“What I thought was important to my brother was having relationships and being part of the community, the church, volunteer efforts; to be seen as someone who is worthy of being a companion. Community participation is important, but it’s the reciprocal relationships that make the participation meaningful and lead to true belonging.”

Many schools, churches, and community organizations are adopting more progressive attitudes about inclusion, Hall and Stancliffe said, but it is not universal.

“Different organizations are at different places on this, and there are some that still find it difficult to embrace change,” Hall said. “For some, accommodations are a cost issue, others just don’t like change. We know a lot of churches believe they are very welcoming, and they don’t even know how some of their practices can be off-putting to people with disabilities.”

The review includes a section on virtual relationships and online safety.

“One study participant said she knew about the risks of meeting an online friend for the first time in person, but the risk of being lonely was even worse, so she was willing to take the risk,” Hall said.

Another critical area of life where social inclusion is often overlooked is in employment, Stancliffe said.

“Getting proper jobs and keeping them are very difficult tasks for people with disabilities, so all the attention is on that issue. Social experiences at work get surprisingly little attention, but are a really important part of our work lives, as many of us learned through the pandemic. It’s a real blind spot in the research.”

Even brief, congenial social encounters can play an important role in boosting an individual’s sense of social inclusion, the researchers noted.

“Quick interactions with a bus driver, shopkeeper, or someone you come across in the park can be quite important,” Stancliffe said. “If a person is supported to interact with people in these situations, once thought to be too minor to bother with, it can really help.”

And those quick encounters don’t have to turn into anything more, Hall said.

“It’s OK to just want an occasional hello and a brief chat,” she said.

To develop the deeper relationships that most people want as well, providing access to mainstream community groups with shared interests is critical, the research showed.

Thinking about funerals and end-of-life issues is also important for understanding social inclusion for people with disabilities, Stancliffe said.

“Even though people with intellectual and developmental disabilities are surrounded by death and will experience the death of friends and loved ones likely many times, sadly many are not told their loved ones are sick, or they are even kept from funerals with no opportunity to say goodbye. It’s one of life’s most important social events, and keeping the grieving and the memory-sharing from people with disabilities is a profound form of social exclusion.”

However well-intentioned the people are who keep their family members with disabilities away from these situations, they are really hurting them, Hall said.

“In all of these social situations, the one thing that sticks out to me as a family member of someone with disabilities is the fear for our loved ones,” she said. “I understand that fear, but we need to learn that by trying to forbid relationships or hide information, we are making our loved ones less safe because they won’t be equipped to develop good relationships.”

Hewitt: Impatience is a virtue

August 16, 2023

Aubyn Stahmer (left) and Amy Hewitt (right) at the University of California Davis. Stahmer is Director of the University Center on Developmental Disabilities (UCEDD) at the UC Davis MIND Institute. Hewitt delivered the keynote address on inclusion at the 2023 MIND Summer Institute on Neurodevelopmental Disabilities on July 28. Hewitt is Director of the Institute on Community Integration, which is the Minnesota UCEDD.

In a July keynote address at the UC Davis MIND Institute, ICI Director Amy Hewitt urged disparate segments of the disability community to work urgently, and holistically, for the inclusion of people with intellectual and developmental disabilities (IDD) in communities.

Decades after the passage of federal and state laws and regulations mandating accommodations to put people with disabilities on more equal footing in housing, education, and the workplace, the number of people with IDD who live in their own homes, attend school in fully integrated classrooms, and work in competitive employment remains stubbornly low, Hewitt said. The event was the annual MIND Summer Institute on Neurodevelopmental Disabilities in Sacramento, California.

The event created an opportunity for participants to engage in important discussions about how we can learn more about inclusion from one another and work together to create positive change, said Amber Fitzgerald, a program manager at the UC Davis MIND Institute.

“The keynote presentation by Amy provided an important look at inclusion across the lifespan and ignited conversations among participants that carried on throughout the day,” Fitzgerald said.

Hewitt pointed to persistent, significant stagnation for students with extensive support needs, about 97 percent of whom are still placed in separate schools or in self-contained spaces instead of in general educational settings. Fewer than a quarter of people with IDD work in competitive, integrated employment. Nearly half of adults with IDD said in surveys that they have been excluded from religious activities.

“We just haven’t gotten it right,” Hewitt said following the event. “We’ve had grand ideas, but we really haven’t figured out true inclusion, and that’s on all of us, because we created these systems. The silos we’ve built in the disability service community underscore the importance of us working together and learning from each other.” A mix of educators, health care providers, caregivers, individuals, and families attended the meeting.

Hewitt said she was struck by the number of people approaching her after the session who felt similarly.

“Many of them said these ideas really resonated with them. We’re all so focused on our niches, and if you’re a parent or a clinician or a teacher, you’re locked in on what’s happening right now for a child,” she said. “You really have to think about supporting people in every stage of life. If you’re working with an adult and have no context of their childhood and what came before, you’re missing out on a lot. And if you’re working with an infant and you don’t have expectations that higher education and a career will, one day, be an option for them, it has an effect.”

Fitzgerald said the comments in written feedback after Hewitt’s session echoed these thoughts. Combining empirical evidence from across the disability field with her experience as a family member of someone with disabilities was powerful, several attendees said.

It also reflects ICI’s breadth of research and training in educational policy, global disability rights, community living and employment, and early intervention. Several times a year, ICI’s full staff convenes to exchange ideas across those focus areas.

What’s needed now, Hewitt said, is to take that unified message into the broader community.

“We’ve built this disability support system for people with disabilities, but then we don’t have expectations of the wider community to be part of that. Whether it’s a faith group, schools, or just communities in general, everyone needs to play a role.”

“Let’s Try a Different Way”

July 19, 2023

Wrapping up her fellowship this spring with the Minnesota Leadership in Neurodevelopmental and Related Disabilities (MNLEND) program, Agnes Cole was also juggling an administrative role at an area service provider and running her own non-profit organization dedicated to supporting people with disabilities to access services.

Cole (MNLEND 2022-23) is founder and executive director, along with her husband, Prince, of the Disability Motivational Network , a nonprofit organization offering support groups and other services to people with disabilities. Both Agnes and Prince were born in West Liberia, Africa, with physical disabilities, and their disability experiences created a passion to help others with disabilities overcome challenges.

Many of the people who come to the organization for support have immigrated to the United States, and they often aren’t aware of important disability services available in their communities, she said.

As a fellow getting to know some of the ongoing research projects at the Institute on Community Integration, she was particularly intrigued with the work of the Residential Information System Project. RISP is a longitudinal study of supports and services for people with intellectual and developmental disabilities (IDD). It is one of three Longitudinal Data Projects of National Significance funded by the Administration on Community Living, and it tracks the living arrangements of people with IDD who are receiving services.

“What really struck me was the large number of people who want to have their disability services delivered at home,” she said. “The waiting lists for receiving home and community-based services (as opposed to large institutions or intermediate care facilities) is so long. We need to allow family members to take care of their loved ones, and many are not even aware of their options.”

Cole contributed to a forthcoming ICI Policy Research Brief that explores the marked differences in waiting times for services delivered in institutional facilities compared with home-based services, which are delivered under a waiver system.

“Agnes is curious and a real advocate,” said Sheryl Larson, principal investigator of the RISP project. “It was very clear to her that what was happening needs to change. She was very much part of the team and made sure that when we made the policy recommendations, they made sense to her.”

Cole earned a master’s degree in healthcare and human services administration from St. Mary’s University in 2018. In addition to her nonprofit work, she also works part time in an administrative role at Thomas Allen, a provider of services for people with disabilities.

“The LEND program gave me the insight to look at service delivery from a different perspective,” she said. “Before, I just had the experience of working with the system as someone supporting my husband. Now I’m able to speak up and say, ‘let’s try a different way’.”

New exhibition: my life

July 19, 2023

A young artist stands in front of a projected image. Handwritten words, scrawled in black marker, appear on the screen behind him and across his face. He wears a black turtleneck sweater and smiles into the camera.

ICI’s Art for All this month debuts a new exhibition—with a research twist—that presents a window into the daily lives and future dreams of youth with disabilities who are transitioning to adulthood. The exhibition, my life, begins July 26 with a program and reception featuring photos and other media images from participants in Minnesota, Singapore, and the Czech Republic.

Researchers, through special education teachers and others, asked youth with intellectual and/or developmental disabilities (IDD) to create photographs, drawings, and video clips depicting some aspect of what is meaningful to them about this time of life. They then followed up with the artists, asking questions about why they chose their subjects and how it reflects their thoughts and lives, said ICI’s Renatá Tichá, who leads Minnesota and Singapore transition projects. Now, they’ll ask for feedback from viewers of the exhibit for their own impressions.

“We may approach art for its beauty or study it for a deeper meaning. Both of these things materialized for this exhibition,” said Nik Fernholz, Art for All program manager. “The students in Singapore address their stories pragmatically, documenting the everyday life that allows them to be independent. In Minnesota, the students give us a slice of their personal life: their pets, what they do at work, or the mural they walk by in the neighborhood park. The Czech students straddle both, approaching things realistically while using the backdrop of creativity to tell their innermost feelings. This exhibition will allow the viewer to pause and reflect on the small things in their daily life and how every human dreams of the future.”

The July 26 program runs 3 p.m. to 6 p.m. in the Blythe Brenden-Mann Community Center at the Masonic Institute for the Developing Brain, 2025 E. River Parkway, Minneapolis. Refreshments will be served, and free parking provided. The exhibit runs July 26 to Sept. 29.

“Very few research articles about transition have used photo elicitation in this way, so we wanted to incorporate the method into our work to look at transition from a different perspective,” Tichá said. “In Minnesota, we gave youth cameras for two weeks and asked them to photograph things that remind them of their transition experience, and many students focused on de-stressing, relaxing, and hobbies. In transition planning, we’re often obsessed with employment and post-secondary education. It was really refreshing to get out of the usual mantras and look at transition through their lens.” The work in Minnesota was part of a five-year Project of National Significance from the Administration on Community Living designed to increase the independence of youth in the state. In Singapore, youth with more significant disabilities were supported by their teachers and family members, who took photos of objects and places the youth indicated were important to them, as part of a joint Minnesota/Singapore project funded by the U.S. Embassy in Singapore.

In the Czech Republic, students created drawings and photos depicting their vision of their desired lives five years in the future, and then discussed them. Jan Šiška, an associate professor at the University of West Bohemia who collaborates frequently with ICI, and his colleague Marie Černíková, an artist and lecturer, designed that effort as part of a three-year Czech grant on transition funded by the Czech Science Foundation.

“One of the drawings is full of twists and turns, beautifully explained by the artist with an incredible contrast of cheerfulness and disaster,” Černíková said. “The artists depicted transition as everything they did, both the everyday and the possibilities.”

In turn, Šiška said, they provided important clues to researchers.

“There is huge potential in using these techniques in research for people with IDD who may have difficulties expressing themselves in traditional ways,” he said.

CEHD News Centers

CEHD News Centers