Smart Policy, Stronger Communities: The Lasting Value of the DD Act Network
The proposed budget for the US Department of Health and Human Services calls for $40 billion in federal cuts that will severely affect people with disabilities and their families. It proposes eliminating the Administration on Community Living and defunding key programs such as the Minnesota Disability Law Center , the Institute on Community Integration, and the Minnesota Governor’s Council on Developmental Disabilities – programs that together support vital community services for Minnesotans with disabilities.
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) is a landmark federal law that affirms the rights of people with developmental disabilities to live with dignity, participate in their communities, and shape the policies that affect them. It created a national network of support—University Centers for Excellence in Developmental Disabilities (UCEDDs), Developmental Disabilities Councils (DD Councils), and Protection & Advocacy (P&A) systems—that work together to expand opportunities, protect rights, and build stronger communities.
Before the DD Act and similar federal investments, families of people with developmental disabilities had few options beyond large, state-run institutions—places marked by abuse, neglect, loss of dignity, and short life expectancies. These facilities offered no real education, skill-building, or opportunity for a full life; they existed to contain, not empower. The DD Act was a turning point, shifting the focus from isolation to belonging in the community.
This shift has been transformative. The DD Act has helped move our country away from institutionalization and toward systems that prioritize community, independence, and self-determination. DD Councils drive policies that support individuals in homes, schools, and workplaces. UCEDDs bridge research and real-world practice, training professionals and families alike. P&As defend civil rights and protect against abuse. Together, they form an efficient, coordinated infrastructure that coordinates research, advocacy, education & training, and policy at every level of society.
Economically, the DD network is a smart investment. Supporting people to live and work in the community reduces costly institutional care, strengthens local economies, and fosters self-reliance. It also promotes people with developmental disabilities as contributing members of society—employees, volunteers, neighbors, and leaders. Supporting their participation strengthens the workforce, boosts local economies, and reduces costly crises. Dismantling this system would be wasteful and ineffective, forcing states to rebuild fragmented efforts that cost more and deliver less.
The DD Act network benefits everyone. It replaces systems of segregation with opportunity, dignity, and shared prosperity—an enduring investment that continues to pay dividends, socially and financially.
Minnesota’s Governor’s Council on Developmental Disabilities
The Minnesota Governor’s Council on Developmental Disabilities is a powerful driver of inclusion, equity, and opportunity. With an annual investment of about $800,000, the Council provides training, education, and advocacy that empower people with developmental disabilities and their families—fulfilling federal goals of capacity building and systems change. In the past three years, the Council has trained 188 people with disabilities to teach bullying prevention to over 8,000 students; supported 295 self-advocates in Greater Minnesota; graduated 102 from the Partners in Policymaking program; and helped 83 individuals secure employment averaging 19 hours per week at $15 per hour. It has also reached 85 members of the Somali community, hosted 692 attendees at training events, enrolled 2,826 in online courses, and distributed over 6.7 million resources.
These efforts consistently earn satisfaction ratings over 90% and result in real progress—participants report a 12% average increase in independence, productivity, self-determination, integration, and inclusion. The Council also amplifies its impact through strong partnerships, securing more than $1.4 million in non-federal match through cash and volunteer contributions. Its results demonstrate the value of sustained investment in systems that support meaningful lives for Minnesotans with developmental disabilities.
Minnesota’s Protection and Advocacy Program: Minnesota Disability Law Center
Mid-Minnesota Legal Aid, through its Minnesota Disability Law Center (MDLC), serves as the federally designated Protection & Advocacy (P&A) agency for Minnesota. Every state has a P&A agency, federally funded to protect the rights of people with disabilities. Using federal access authority, P&As investigate and monitor reports of abuse and neglect in settings such as schools, jails, group homes, and mental health institutions. As Minnesota’s P&A, MDLC provides legal representation, information, policy advocacy, education, and outreach statewide—addressing issues ranging from community access to abuse and neglect in facilities.
Each year, MDLC directly serves nearly 1,000 clients and reaches many more through education and systems change efforts. In the past year alone, it monitored over 40 facilities that serve people with disabilities. MDLC’s work is vital to protecting the safety, dignity, and independence of Minnesotans with disabilities, ensuring their rights are upheld and their voices heard.
Minnesota’s University Center on Excellence in Developmental Disabilities: Institute on Community Integration
Minnesota’s UCEDD is the Institute on Community Integration (ICI) at the University of Minnesota. For over 40 years, ICI has advanced independence, opportunity, and quality of life for people with disabilities through research, training, and outreach that shapes policy and practice statewide and nationally.
ICI exemplifies this return on investment. With just under $600,000 in annual core federal funding that serves as a foundation for research, education & training, and outreach, ICI leverages over $30 million through grants, contracts, and partnerships, bringing nearly $50 to Minnesota for every federal dollar. That funding powers research, training, and innovation with nationwide impact.
ICI’s work has had a meaningful impact on state systems, provider organizations, advocacy groups, and, most importantly, individuals and their families.
Key ICI Programs:
The Residential Information Systems Project (RISP) is a federally funded initiative that provides critical, ongoing data on how and where people with intellectual and developmental disabilities (IDD) receive paid supports. Since 1977, RISP has tracked national trends in residential and in-home services through annual surveys of state agencies and large public facilities. By analyzing Medicaid-funded long-term supports and producing reports, policy analyses, and technical assistance, we help policymakers, advocates, and researchers understand system changes, inform decisions, and improve the lives of people with IDD.
“Segregating People is always bad; people never grow in [institutions] and are safer and happier in the community.” – Ricardo Thornton, former institution resident
The Research and Training Center on Community Living has advanced community living and participation for people with intellectual and developmental disabilities (IDD) since 1988 through nationally aligned research, training, and outreach. Our work addresses critical issues in services and outcomes, influencing policy and practice for people with IDD, whether or not they receive formal supports. This Center’s research has led to many practical resources that help providers and practitioners in areas such as building community systems of support, direct support workforce, self-determination, self-direction, social inclusion, employment, retirement, and end-of-life planning for persons with IDD. Our research provides data used in advocacy and capacity building and provides evidence-informed practices.
“I lived [in an institution] for 30 years. It was hard work there. We couldn’t go places when we were younger. We had to stay mostly on the wards... There was a lot of work scrubbing floors on our hands and knees.” – Helen Bechold
ICI’s TeleOutreach Center addresses critical delays in autism evaluations and services—especially in rural, underserved, and military-connected communities—by using telehealth to deliver early intervention, caregiver coaching, and provider training. Through the AutismFIRST model, Project ECHO, and statewide partnerships, the Center builds capacity across Minnesota’s service system. Since 2021, we have trained over 4,500 professionals, supported 240 families, and reached 57% of Minnesota counties, with a new northern Minnesota telehealth site further expanding access and closing care gaps for underserved populations.
"Once we started getting answers, suddenly, it feels like we have the right path to walk. But I think the greatest benefit to having [a telehealth connection] in our house is that these are skills our son needs to build inside the house so he can start to make those connections right away." – Jessica, parent
Interdisciplinary Education in Intellectual and Developmental Disabilities programs at ICI addresses the critical need for knowledgeable, collaborative leaders equipped to improve policies and services for individuals with disabilities. Through the Minnesota LEND program and the Disability Policy and Services Certificate, ICI trains professionals across health, education, and human services to understand and navigate complex systems affecting people with disabilities. These programs emphasize real-world experience, cross-sector collaboration, and systems change. Graduates—381 from LEND and 1,281 from the Certificate program—go on to lead in government, nonprofits, and academia, advancing opportunities, improving access to services, and driving better outcomes for individuals with disabilities across the lifespan.
“The LEND experience really built a foundation of person-centered thinking that I use every day in clinical settings. When parents or caregivers talk about their concerns, we try to step back and ask, ‘What do they love, and what are their strengths?’ It helps build their story, and it’s nice to put that in a chart so others can see a fuller identity of a child.” – Mollika Sajady, MNLEND Fellow 2018-19
The Minnesota Autism and Developmental Disabilities Monitoring (MN-ADDM) project improves outcomes for children by collecting and sharing critical data on autism prevalence, early identification, and service access. In a state where many families still face delays, MN-ADDM informs policies and practices that expand early intervention, improve training for professionals, and ensure more consistent access to services for all communities. Our work has helped secure over $3.5 million in federal funding, supported early identification efforts like the Autism First Project and Learn the Signs. Act Early., and driven statewide improvements in education, healthcare, and public safety, helping thousands of families and building a more inclusive future for Minnesota’s children.
“The ADDM autism prevalence data is the ‘crown jewel’ of autism prevalence data collection. We use it for our autism acceptance awareness campaigns. It is the only data the Somali community in Minnesota relies on for up-to-date autism prevalence surveillance.” – Mahdi Warsama, MN Somali Parent Autism Network
Check & Connect addresses the high rates of school disengagement and dropout among students with disabilities by pairing them with trained mentors who build relationships, monitor progress, engage families, and collaborate with school staff. This evidence-based model trains over 2,000 educators annually and supports a nationwide network of certified trainers. Implemented across schools and youth-serving organizations, Check & Connect improves student engagement, boosts graduation rates, and prepares young people for college, employment, and independent living, helping to break cycles of marginalization and expand opportunity.
“If I didn’t have a [Check & Connect] mentor, I probably would still be a freshman or probably would have dropped out. Because without a mentor, I feel like I was very lost and I was very distant, and it was just a lot of stuff to… like, process.” – Heather, student
DirectCourse, a partnership between the Institute on Community Integration and Elsevier, strengthens the long-term services and supports (LTSS) workforce by addressing inconsistent training and high turnover that undermine quality of life for people with disabilities, mental health conditions, and older adults. Through scalable, competency-based online training developed with states, providers, and educators, DirectCourse builds professional skills, promotes best practices, and supports workforce retention. Millions of LTSS professionals have been trained, leading to better service quality, stronger workforce stability, and improved outcomes for the individuals and families they support, advancing independence, autonomy, and equity nationwide.
“DirectCourse has the content that staff and managers and organizations who work in practice with people really need. The national experts who create the content are at the top of their fields.” – Carol Britton Laws, Institute on Human Development & Disability, University of Georgia
The Positive Supports program at ICI addresses the critical gap in consistent access to evidence-based practices for people with disabilities by building provider capacity through cohort training, coordinating regional support networks, and developing statewide Positive Behavior Support infrastructures in Minnesota and Maryland. Since 2016, these efforts have successfully transformed support systems by improving organizational policies, enhancing staff competency, and establishing sustainable training networks that reduce barriers for individuals transitioning from acute care settings.
“I have supported people dealing with grief-related aggression, suicidal ideation, and severe self-injurious behaviors that led to hospitalization. These examples emphasize how critical Positive Support Services are and the importance of having competent professionals to deliver these interventions. The quality of care provided in these situations can significantly impact the lives of both the individuals and their caregivers." – Heather Wilford, Mains’l Services
The Transition Model for Youth with IDD program addresses the complex challenges young people with intellectual and developmental disabilities face when transitioning to adulthood. Through a 5-year Project of National Significance, ICI partners with four Minnesota school districts to implement locally adapted transition models aligned with state frameworks while customized to district contexts. This work improves outcomes by raising awareness of quality planning practices, providing data-driven insights, offering technical assistance, developing family and employer resources, and guiding state agencies in framework implementation.
“We have never done this kind of transition envisioning before, where we would sit down, get to think about it, and discuss transition for our students in our program together. I really appreciated that." – Nancy, school psychologist
The National Center on Educational Outcomes (NCEO) addresses the exclusion of students with disabilities and English learners in educational assessments by developing accessible evaluation systems with appropriate accommodations. Through evidence-based resources, technical assistance, and policy leadership, NCEO equips educators with practical tools to improve assessment participation while promoting universal design principles and cross-system collaboration. Our work has increased the involvement of underserved students in assessments, improved reporting, and raised academic expectations, advancing equity and collaboration across general and special education systems.
"Because of our work with NCEO, we've had success in making sure that 10,000 students in our state are now taking the right state assessments." – Wendy Stoica, Ohio Dept of Education and Workforce
The TIES Center addresses the research-to-practice gap for students with extensive support needs by promoting inclusive education based on high expectations and presumed competence. Through targeted technical assistance to educational systems at state, district, and school levels, coupled with evidence-based resources for key stakeholders, TIES has increased participation rates, improved specialized instruction, fostered student friendships, enhanced parent partnerships, and established teacher professional development communities.
"It is refreshing to have an organization truly value what students with disabilities bring to this world and advocate for them to have the support they need to not only survive but thrive beyond what many families even imagine possible. The work of TIES is critical for families because we need to understand what is possible, how to implement it, and communicate it to the school systems." – MN parent of a child with a disability
Improving Employment Outcomes for People with IDD has been a core focus of our work for over 20 years. We address systemic barriers through research, policy advocacy, and collaboration with communities, targeting persistent challenges such as low employment rates, reliance on segregated work settings, and inconsistent state-level policies and data systems. Our efforts advance Employment First principles and promote competitive, integrated employment—opportunities that improve economic stability, mental health, and overall quality of life for individuals with IDD. To support this vision, we provide technical assistance and consultation to service providers and employers across Minnesota, helping to build more inclusive and effective employment practices.
"[The ICI] technical assistance team has been an extraordinary resource. Their sweeping breadth of expertise is both uncommon and unconstrained, and as a result, we delved deeper than thought possible, with guided intentionality, into the intricacies of organizational transformation." – Parent
The Global Resource Center for Inclusive Education addresses systemic barriers in education that limit opportunities for individuals with disabilities around the world. Partnering with educators, policymakers, and communities worldwide, we provide culturally responsive training, tools, and policy support. Their work has advanced inclusive practices and empowered individuals in countries like Japan, Kenya, Ukraine, Bhutan, and Armenia, building global capacity for education that includes everyone.
“We are still at the beginning of the process, but every year sees more of the students who previously participated in the project come to schools as teachers ready for making schools inclusive.” – Sergiy Sydoriv, National Precarpathian University, Ukraine
Protect Disability Funding
Please stand firmly in support of the Minnesota Disability Law Center, the Governor’s Council on Developmental Disabilities, and the Institute on Community Integration—three critical programs that form the backbone of our state’s disability services system. These programs, created and sustained through the federal DD Act, ensure that Minnesotans with developmental disabilities have access to opportunity, protection, and full participation in community life.
With a proposed federal budget threatening to eliminate the Administration on Community Living and cut $40 billion in essential services—including $13 million from the Institute on Community Integration, $2.3 million from the Minnesota Disability Law Center, and $1 million from the Governor’s Council—Minnesota must act now. We ask our state leaders to voice strong public support for continued federal investment in the DD Act network and to educate fellow policymakers on the devastating consequences of defunding these programs. Without them, our communities risk returning to a time of segregation, isolation, and institutional care—at far greater cost, both human and economic. Let’s protect this smart, cost-effective infrastructure that has transformed lives and strengthened Minnesota for generations.