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A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities
Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science …
Published: 2024
Prevalence of Spina Bifida Across the Lifespan in the USA
Aim: To estimate the prevalence of spina bifida across the lifespan, the number of people with spina bifida by state, and variations in spina bifida prevalence by insurance type, state, and …
Published: 2026
NCEO Newsletter: February 2026 issue
This February issue of NCEO’s newsletter focuses on two new resources, a timely past product, and a popular section of our website. The new resources are NCEO’s 17th Survey of States where NCEO …Published: February 2026
FYI from the Institute on Community Integration: January 2026
The Institute's monthly staff newsletter features news of recent activities, accomplishments, and resources. This month's first feature story is about ICI researchers documenting the experiences …Published: January 2026
News
Making Change: Community Living in the 21st Century
Published: January 2026
News
Leading in Challenging Times
Published: January 2026
News
John Sauer: Advancing Inclusion Through Systems Change
Published: January 2026
Rethinking What Works: January 2026
This issue of Rethinking What Works highlights the integration of benefits planning into employment services. The newsletter also contains information about upcoming trainings, a benefits planning …
Published: January 2026
FYI from the Institute on Community Integration: December 2025
The Institute's monthly staff newsletter features news of recent activities, accomplishments, and resources. This month's first feature story is about new modules that ICI's TIES Center designed …
Published: December 2025
News
Unbounded Spirit: Remembering John G. Smith
Published: December 2025
News
A Model of Self-Determination
Published: December 2025
News
“I Have More to Do”
Published: December 2025
News
Filling a Gap: New Training for Parapros
Published: December 2025
Momentum: Winter 2025-26
This issue of Momentum opens with Betsy Malecha, a prospective college student who wants to become a gym teacher and coach. The News section features grantee updates, takeaways from MIHEC's 2025 …
Published: Winter 2025-26
Rethinking What Works: December 2025
This issue of Rethinking What Works spotlights MTI's Leadership Essentials for Middle Managers course. The newsletter also contains information about Supplemental Security Income for workers with …
Published: December 2025
RISP Data Bytes: Medicaid HCBS Expenditures Per Person by Age in FY 2021
In 2021, almost a million people with IDD received HCBS waiver services with an average per-person expenditure of $51,835. Adults often live in non-family homes, so their waiver expenditures are …
Published: December 2025
MTI Quarterly Trainings: Transportation Solutions for Community Engagement and Employment
Transportation is a critical part of the employment process and is key to accessing one’s community. For many provider agencies, navigating transportation, or the lack thereof, is identified as a …
Published: 11/20/2025
FYI from the Institute on Community Integration: November 2025
The Institute's monthly staff newsletter features news of recent activities, accomplishments, and resources. This month's first feature story is about new modules and related resources that ICI …
Published: November 2025
News
Two UCEDDs Unite: A New Partnership to Strengthen New Jersey’s Direct Support Workforce
Published: November 2025
At a Crossroads: The Intersection of AT, AAC, and AI in the Education of Learners with Varied Needs
This report summarizes the key discussions and findings from a forum held on June 25, 2025, in Denver, Colorado. Organized jointly by the Assessment, Standards, and Education for Students with …
Published: November 2025
News
Global Reach Summit Spotlights Complex Disability Needs
Published: November 2025
News
Aging: Changing Support Needs
Published: November 2025
News
New Behavioral Health Resources Launched
Published: November 2025
RISP Data Bytes: Institutionalized Adults with IDD, 1967 to 2021
In 1967, 29.1% of adults with IDD in the U.S. lived in large state-run institutions, while most others resided with family. By 2021, only 0.7% lived in such facilities, with an additional 0.8% in …
Published: November 2025
Frontline Initiative: Supporting People as They Age
When direct support professionals (DSPs) support people, each life stage presents different opportunities and challenges. As people age, their decisions and bodies may change. DSPs' frequent …
Published: Fall 2025
Rethinking What Works: November 2025
This issue of Rethinking What Works spotlights MTI at MN APSE's annual conference and features a story from the field about a peer mentor helping a friend find a job. The newsletter also contains …
Published: November 2025
NCEO State Surveys: 2025 Survey of States: Trends and Issues in Statewide Assessment of Students with Disabilities
This report summarizes the seventeenth survey of states by NCEO, collecting over three decades of data on the participation and performance of students with disabilities in statewide assessments. …
Published: November 2025
Transition of People with Intellectual and Developmental Disabilities from School to Adulthood: A Scoping Review
Objectives : Transition from school to adulthood is important in the lives of youth with intellectual and developmental disabilities. This study seeks to identify what models, policies and trends …
Published: 2025
A Closer Look: Episode 11: Dupree Edwards Talks About the DSP Who Wouldn't Give Up on Him
Dupree once struggled with tasks like cooking, cleaning, and daily living skills. He felt DSPs gave up on him, but things started to get better when Miss Gail came into the picture. She taught …
Published: 5/13/2025
Impact: 40 Big Ideas
What big ideas have most shaped the lives of people with intellectual and other developmental disabilities? To mark its 40th anniversary, the Institute on Community Integration polled self-advocate…
Published: Fall 2025
FYI from the Institute on Community Integration: October 2025
The Institute's monthly staff newsletter featuring news of recent activities, accomplishments, and resources. This month's first feature story is about ICI's 40th anniversary event, at which …
Published: October 2025
News
ICI: 40 Years of Community Living
Published: October 2025
NCEO Newsletter: October 2025 issue
This October issue of NCEO’s newsletter focuses on renewal, highlighting NCEO's 35-year history, commitment to innovation, and future partnerships.Published: October 2025
RISP Data Bytes: Behind the Numbers at RISP
As a Project of National Significance, RISP provides critical and unique insights about residential supports to people with IDD across the United States, but RISP collects other data too. While …
Published: October 2025
News
MNLEND Alum Looks Back
Published: October 2025
News
40 Big Ideas in Disability
Published: October 2025
News
Elevating the Direct Support Profession
Published: October 2025
Boldly Challenging Ableism: Episode 18: Michael Sack on Keeping the Twin Cities Accessible and Disability Advocate Ed Bartz
Michael Sack talks to us about his work with the city of Minneapolis in getting and keeping the community accessible. Then a conversation with disability advocate Ed Bartz.
Published: 10/12/2025
Boldly Challenging Ableism: Episode 17: Artist and Self-Advocate Thomas Robinson
On this episode of Boldly Challenging Ableism, host Katrina Simons speaks with artist and self-advocate Thomas Robinson. Thomas shares his journey as a leader in disability advocacy and how art …
Published: 10/6/2025
Boldly Challenging Ableism: Episode 16: Renáta Tichá, Research Associate, ICI at the U of MN
Renáta Tichá is a research associate at the Institute on Community Integration at the University of Minnesota. Renáta talks with Katrina about her research work around transitioning to adult …
Published: 10/6/2025
Telepractice-Supported Augmentative and Alternative Communication Intervention: A Systematic Review
Children with autism spectrum disorder and/or with intellectual disabilities (IDD) who experience complex communication needs often benefit from augmentative and alternative communication (AAC) …
Published: 2025
Rethinking What Works: October 2025
This issue of Rethinking What Works spotlights October as National Disability Employment Awareness Month, featuring a story from the field. The newsletter also contains upcoming trainings, resource…
Published: October 2025
NCEO Reports: A Historical Review of Alternate Assessment and 1% Cap (#450)
The history of alternate assessments and the 1.0 percent participation cap on state-level participation rates is deeply rooted in federal education legislation. From 1994 to 2025, federal legislati…
Published: October 2025
Boldly Challenging Ableism: Episode 15: Rebelling Against Ableism with BJ Stasio
BJ Stasio is Advocate for the New York Office for People with Developmental Disabilities. An activist, he talks to us about his life of advocacy work—and about being a rebel.
Published: 9/23/2025
Boldly Challenging Ableism: Episode 14: Amy Hewitt, Director, Institute on Community Integration
Amy Hewitt joins us to discuss the direct support care crisis and why it’s an “everyone” problem.
Published: 9/23/2025
NCEO Reports: State Discussion Guide for Communicating SSIP Data with Stakeholders (#452)
Federal law requires states to engage stakeholders in the State Performance Plan/Annual Performance Report (SPP/APR), especially for the State Systemic Improvement Plan (SSIP). …Published: September 2025
NCEO Reports: A Summary of the Research on the Effects of K–12 Test Accommodations: 2023 (#451)
This report presents a synthesis of the research literature published in 2023 on testing accommodations for U.S. elementary and secondary students with disabilities.Published: September 2025
FYI from the Institute on Community Integration: September 2025
This month's first feature story is about a disability rights roundtable recently hosted by a member of Congress, at which ICI staff and parents spoke. The second story concerns an upcoming …
Published: September 2025
News
Fostering Futures
Published: September 2025
News
MIHEC Conference: Transformation
Published: September 2025
News
Morrison Hosts Disability Rights Roundtable
Published: September 2025
Momentum: Fall 2025
This issue of Momentum opens with Kal-el Spears, a prospective college student from Red Lake. The News section features an inclusive higher education needs assessment and a visit to the University …
Published: Fall 2025
RISP Data Bytes: RISP Data in the Media: Telling the Story of IDD Services
Using data from the Residential Information Systems Project (RISP) is a powerful way to tell the story of residential services for people with intellectual and developmental disabilities (IDD). It …
Published: September 2025
Rethinking What Works: September 2025
This issue of Rethinking What Works spotlights the upcoming MN APSE conference, which MTI is sponsoring, and MTI's latest Quarterly Training on provider transformation. The newsletter concludes …
Published: September 2025
Social Determinants of Health Strand: Recommendations of the National Goals on Health Equity Working Meeting
There has been a shift in U.S. population health and wellness initiatives in the past decade from initiatives to describe health disparities to initiatives to understand and address underlying …
Published: 8/25/2025
MTI Quarterly Trainings: Staying the Course: Navigating the Ups and Downs of Provider Transformation
Before the Minnesota Transformation Initiative (MTI) took shape, several provider organizations across the state received support for their transformation efforts through the 2018-20 Minnesota …
Published: 8/14/2025
Rhode Island Statewide Workforce Initiative
People with intellectual and developmental disabilities (IDD) who want to live and work in their communities need committed direct support professionals, but this workforce is chronically underpaid…
Boldly Challenging Ableism: Episode 12: Jen Sommerness on Ableism in Education
Katrina is joined by Jen Sommerness, a research associate at the TIES Center at the Institute on Community Integration. Jen discusses ableism in schools and making education meaningful for every …
Published: 8/24/2025
Boldly Challenging Ableism: Episode 11: Katherine McLaughlin, Founder and CEO, Elevatus Training
Katherine McLaughlin joins us to talk about sex and disability. She also shares why involving people living with disabilities in sex education is important.
Published: 8/17/2025
FYI from the Institute on Community Integration: August 2025
The Institute's monthly staff newsletter features news of recent activities, accomplishments, and resources. This month's first feature story is about last month's successful Disability Pride …
Published: August 2025
News
NCEO Celebrates 35 Years
Published: August 2025
News
Charting Futures: New ICI Resources Help Families Aim Higher
Published: August 2025
News
Pride Fest a Success
Published: August 2025
Boldly Challenging Ableism: Episode 10: Jake Hamilton
Jake Hamilton joins Katrina to talk about his family, growing up, what he does for work and what he does in his leisure time.
Published: 8/10/2025
News
New Tools For School
Published: August 2025
Boldly Challenging Ableism: Episode 9: Parenting and Confronting Ableism with Nikki Villavicencio
Nikki Villavicencio is a Disability Culture and Leadership Specialist at Advocating Change Together. She is also an activist and City Council member. Nikki talks about what it’s like living with a …
Published: 8/7/2025
Boldly Challenging Ableism: Episode 8: Chris Farrell on Disability, Employment, and Money
Katrina is joined by Chris Farrell, Senior Economics Contributor for MPR News and Marketplace. Chris talks with Katrina about limitations around disability and money. We also talk about working …
Published: 8/7/2025
Boldly Challenging Ableism: Episode 7: Kathy Ware on how Systems and Disabilities Interact (Part 2)
Kathy Ware continues our discussion on ableism in systems meant to help and protect people living with disabilities. This is the second part of a two-part series.
Published: 8/7/2025
Rethinking What Works: August 2025
This issue of Rethinking What Works spotlights Wabasha County Developmental Achievement Center's transformation to community-based employment and a leadership needs survey. The newsletter concludes…
Published: August 2025
News
Let's not let decades of disability progress be erased
Published: 7/17/2025
FYI from the Institute on Community Integration: July 2025
The Institute's monthly staff newsletter features news of recent activities, accomplishments, and resources. This month's first feature story is about the new Frontline Initiative , which highlight…
Published: July 2025
RISP Data Bytes: Supporting LTSS Recipients in the United States Through Various Funding Authorities
Funding for support for people with intellectual and developmental disabilities (IDD) comes from a variety of funding sources called funding authorities. In 2020, every state and the District of …
Published: July 2025
News
Help for the Caring Crisis
Published: July 2025
News
Square One, and Back
Published: July 2025
RISP Data Bytes: How Have the Places People with IDD Live Changed?
In 1982, almost all long-term supports and services (LTSS) for people with intellectual and developmental disabilities (IDD) were provided in institutions licensed as Medicaid Intermediate Care …
Published: June 2025
News
The Power of Teams in Direct Support
Published: July 2025
Boldly Challenging Ableism: Episode 6: Kathy Ware on how Systems and Disabilities Interact (Part 1)
Kathy Ware introduces us to herself and her adult child. Kathy and Katrina talk about how systems and disabilities interact—for good and for NOT so good. This is the first part of a two-part …
Published: 7/14/2025
Using Supporters to Increase Participation in Qualitative Research Interviews by People With Intellectual Disabilities
Background: Researchers need to hear directly from individuals with intellectual disabilities to better understand their experiences and perspectives. However, much inclusive research uses intervie…
Published: 2025
News
Johnstone Takes on New Roles
Published: July 2025
Rethinking What Works: July 2025
This issue of Rethinking What Works opens with MTI offering free technical assistance to Minnesota providers who support people with disabilities in working in competitive integrated employment. …
Published: July 2025
Momentum: Summer 2025
This issue of Momentum opens with the recent killings and attempted killings of Minnesota legislators and their families. The Student Profile is Alec Willard, who is starting college. The News …
Published: Summer 2025
Boldly Challenging Ableism: Episode 5: Matt McClean on Living as a Disabled Transgender Man
Katrina is joined by Matt McClean who talks about identity and the intersectionality of living as a disabled transgender man. We talk a little bit about the fears that trans people must contend …
Published: 7/2/2025
Boldly Challenging Ableism: Episode 4: Brian Begin on Fair Wages for Workers with Disabilities
Host Katrina Simons is joined by Brian Begin for a conversation about Section 14(c) of the Fair Labor Standards Act—a provision that allows employers to pay subminimum wages to workers with …
Published: 6/15/2025
Direct Support Workforce Solutions: A Guidebook of Strategies for Individual and Collective Action Toward Workforce Stability
This book puts evidence into action to address the critical issues affecting both providers supporting community living for people with intellectual and developmental disabilities and the direct …
Published: 2025
Rhode Island Statewide Workforce Initiative: SupportWise Workforce Data Summary and Implications for Reporting Period July 1, 2024 – December 31, 2024
People with intellectual and developmental disabilities (IDD) who want to live and work in their communities need committed direct support professionals, but this workforce is chronically underpaid…
Published: 2025
Frontline Initiative: Effective Relationships with Teams
The work of direct support includes many people. Direct support professionals (DSPs) work on teams with the people they support, other DSPs, supervisors, family members or friends of the people …
Published: Spring/Summer 2025
FYI from the Institute on Community Integration: June 2025
The Institute's monthly staff newsletter highlights news of recent activities, accomplishments, and resources. The first story is about Boldly Challenging Ableism , a new AM950 radio show and …
Published: June 2025
Policy Research Brief: Housing Options for Adults with Intellectual and Developmental Disabilities
In recent decades, the number of people with intellectual and developmental disabilities (IDD) living in IDD institutions has dropped noticeably. Meanwhile, the number of people with IDD living in …
Published: June 2025
News
Immediate Impact
Published: June 2025
News
Passion + Purpose
Published: June 2025
News
Future Leaders Complete MNLEND
Published: June 2025
News
“Boldly” Takes Flight
Published: June 2025
Boldly Challenging Ableism: Episode 3: Inclusive Learning Beyond High School with Mary Hauff and Dupree Edwards
Minnesota Inclusive Higher Education Consortium (MIHEC) director Mary Hauff and Lead State Advisor on Systems Change Dupree Edwards talk about MIHEC and the importance of being a lifelong learner— …
Published: 6/8/2025
Impact, The Conversation: Episode 13: The Loneliness Issue: Feeling like Home
"I was hollow..." That's how Ann describes the loneliness she felt when her brother moved away for a new job. In this episode, Ann and some of the rest of the Shervheim family share how they deal …
Published: 5/13/2025
Impact, The Conversation: Episode 12: The Loneliness Issue
Lonely? You're not alone. Loneliness has plenty of company these days, and it hits people with and without disabilities in alarming numbers. Just having a disability, particularly an intellectual …
Published: 5/12/2025
Characterisation of Challenging Behaviours and Associated Genetic and Neurological Features in Cardiofaciocutaneous Syndrome
Background: Challenging behaviours such as self-injury and aggression are prevalent among individuals with intellectual disability (ID), significantly impacting quality of life. Cardiofaciocutaneou…
Published: 2025
The Impact of COVID-19 on Direct Support Professionals and Frontline Supervisors Mental and Physical Health
Direct support professionals (DSPs) and frontline supervisors (FLSs) play a crucial role in the delivery of home and community-based services for people with intellectual and developmental disabili…
Published: 2025
Rethinking What Works: June 2025
This issue of Rethinking What Works spotlights resources that help disability professionals feel more confident when discussing work and government benefits with their jobseeker clients who rely …
Published: June 2025
Impact: Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities
Pervasive social isolation and loneliness threatens all of us, and just having a disability, particularly an intellectual and/or developmental disability, is a critical risk factor. Our new issue …
Published: Spring/Summer 2025
NCEO Newsletter: June 2025 issue
In this newsletter we highlight five key NCEO resources that explore various topics around the Alternate Assessment based on Alternate Academic Achievement Standards (AA-AAAS). Three of these are …
Published: June 2025

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