Research Portfolio
Past Studies & Reports
Evidence you can act on: Reliable data, written to inform disability field leaders in practice.
Research — and the data and findings it produces — is essential for effective leadership. In a field shaped by constant change, no single leader can stay fully informed on every challenge, opportunity, and emerging issue. Data helps leaders make stronger decisions, better understand existing challenges and trends, and stay abreast of evidence-based and innovative strategies that improve the lives of people with IDD.
For two decades, NLCDD has led research and evaluation projects, designed to inform the decisions and actions of disability field leaders. Conducted in partnership with the people most impacted, our research team applies robust methodological and analytical techniques to produce findings and insights that guide day-to-day leadership practices, service model design, advocacy and legislative action, and more.
To access reports from all previous projects, check out our resource library:
Recent Reports & Publications
Building effective service systems for people with complex support needs
Research Question: What do systems require to support people with co-occurring IDD and mental health support needs?
Research Approach: A mix-methods study that included a statewide survey of and interviews with people with disabilities and their families, and a national scan of promising practices conducted through interviews, literature review, and policy analyses.
Key Findings: Systems that most effectively support people with co-occurring IDD and mental health support needs use a multipronged approach. They invest in community infrastructure- such as training, technical support, and therapeutic specialists to support people where they live. They build rapid, trusted crisis interventions for when people have short-term intensive needs. They also invest in deinstitutionalization to help those who have been segregated from their communities, sometimes for a lifetime, thrive without facility-based support.
Urgent Need: People from traditionally underserved communities (BIPOC with disabilities, families living in poverty, people in rural areas) are three times more likely to have been institutionalized due to a lack of community-based supports.
How Leaders Can Use the Data: The findings from this study show leaders the models, innovations, and resources that work to set up effective systems of support for people with co-occurring IDD and mental health support needs. They also point to day-to-day practices, such as inviting mental health professionals to person-centered planning processes, and investing in certification for frontline leaders who have demonstrated efficacy.
Read Enhancing Services for People with Co-Occurring Support Needs
Creating inclusive organizations from the inside out
Research Question: What drives inclusion and belonging in agencies that provide services to people with IDD?
Research Approach: A mixed-methods state-wide study using interviews with service users, organizational leaders, staff surveys of provider organizations, and an in-depth document review of organizational policies, paperwork, and online materials across the country, and a follow-up national study using interviews with organizational leaders and staff surveys.
Key Findings: Organizations that provide the most inclusive services embed inclusion and belonging into the fiber of their structures and operations. For instance, job descriptions, policies, and performance appraisals all include the role of promoting inclusion and belonging.
Urgent Need: There are very few provider agencies across the United States that provide fully inclusive services. Even those with the strongest practices and structures to promote inclusion often provided some form of congregate or segregated service.
How Leaders Can Use the Data: The findings from these related studies show leaders replicable practices they can incorporate into the policies and infrastructure of their own agencies, including incorporating values and language of person-centeredness and self-determination in agency paperwork and guidelines, initiating transparent, frequent, and two-way communication among staff and people receiving services, and partnering with community organizations to facilitate community-embedded inclusion.
Read Leading Our Values: What it Takes to Provide Individualized & Inclusive Services and Advancing Community-Based Supports
Advancing dignity and inclusion in services for LGBTQIA+ people with IDD
Research Question: How are services and systems responsive to the needs and interests of LGBTQIA+ people with IDD?
Research Approach: A mixed-methods study using interviews and a statewide survey of people with IDD and families, including LGBTQIA+ and non-LGBTQIA+people with IDD, and leaders of organizations supporting LGBTQIA+ people with IDD.
Key Findings: LGBTQIA+ people with disabilities face greater challenges accessing and finding responsive disability-related services. About half reported negative experiences or left services due to insensitive or unresponsive support. Significant barriers within the service system, including stigma, lack of knowledge or training, and safety concerns.
Urgent Need: Some LGQTQIA+ people with IDD avoid disclosing their identity to service providers, fearing that they will lose trusted services, receive lower quality supports, or experience discrimination and stigma. Increased federal attention to LGBTQIA+ issues—especially for trans and nonbinary people—has heightened safety concerns within formal services.
How Leaders Can Use this Data: To promote full inclusion and dignity, people with disabilities need to feel safe to share and receive services that are responsive and affirming of all aspects of their identity. The findings from this study inform leaders about ways to foster inclusion by building open cultures, strengthening knowledge around equity and inclusion, and hiring employees who are openly gay and trans so LGBTQIA+ people with IDD feel welcome and supported.