Reports

The Bridge Forward Event, funded by the Washington Developmental Disabilities Council and facilitated by the NLCDD, was a four-day free virtual conference that led to important learning, idea sharing, and recommendations to make the Washington behavioral health and IDD service systems better. Several materials were developed to help people better understand the issues faced by people with IDD and behavioral health support needs and potential solutions for system improvement.

This research project, funded by the Ohio Developmental Disabilities Council and led by the National Leadership Consortium on Developmental Disabilities, aimed to learn more about the experiences of LGBTQ+ people with IDD across Ohio by investigating service access barriers, their experience and impressions of service providers, and the support systems that are currently used, and what is needed in the future. This report shares results from a survey and interviews of people with IDD, their family members, and their support staff across Ohio and offers recommendations about how to improve service navigation, access, and quality, as well as how to develop formal and informal supports that are welcoming and affirming for LGBTQ+ people with IDD.

The National Leadership Consortium on Developmental Disabilities, funded in part by the May and Stanley Smith Charitable Trust, conducted a study to find common organizational qualities and practices that help service providers begin and keep offering individualized, inclusive services for adults with disabilities who receive direct support. Findings from interviews with executive leaders and a national study are included in this report, as well as recommendations from the results that will help promoted individualized, inclusive supports.

More knowledge is needed about how provider organizations can transform their services away from congregate services to individualized, person-centered services that promote community living. This case study involved a document analysis, interviews, focus groups, and surveys with five service providers in North Carolina to better understand the factors that enable community-based services. Results provide concrete and actionable strategies that agency professionals can adopt and people with IDD and their family members can advocate for and demand.

To better understand the needs and experiences of people with co-occurring disability and mental and/or behavioral health support needs in Washington, the National Leadership Consortium, with support from the Washington Developmental Disabilities Council, conducted a statewide survey, interviews, and focus groups. We also research the current national landscape of policies, programs, services, and practices to support people with IDD and mental and behavioral health support needs that could inform the future efforts and direction of services in Washington state. This report outlines the findings of the study and ends with recommendations to inform people with lived experiences, professionals, advocates, and policymakers to improve the Washington service system.

National Leadership Consortium, in partnership with the Delaware Division of Developmental Disabilities Services, developed a 12-week training series to strengthen the knowledge, confidence, and leadership skills of Delaware’s emerging direct support leaders in the disabilities field. The first cohort of Delaware Direct Support Professionals completed the Leadership, Empowerment, Advancement, & Development (LEAD) program during the Spring of 2023.

Over the last several years, numerous studies have cited the importance and impact of leaders on transforming systems and organizations, determining the quality of services, outcomes experienced by people with disabilities, and more. However, there are limited evidence-based studies that categorize the vision, values, and needs of leaders whose actions directly impact the ability of people to live fully self-determined lives. This study aims to understand what is needed from leaders who are directly delivering services, which allows policymakers and funders to better target resources to promote change in the disabilities field and lead to better quality of life for people with disabilities.

The Independent Monitoring for Quality (IM4Q), funded by the Office of Developmental Programs and facilitated by the Institute on Disabilities at Temple University, builds on the National Core Indicators (NCI) process to measure satisfaction, dignity, respect, rights, emergency preparation, employment, relationships, inclusions, choice, and control from the perspective of Pennsylvanians with disabilities who use services and supports.

People with disabilities in the U.S. have historically been underemployed and underpaid, limiting their ability to save for their futures. The National Leadership Consortium interviewed 40 adults and family members of people with disabilities to investigate the impact of the COVID-19 pandemic on the spending and saving habits of people with disabilities and how it affected their future financial planning.

Today, many people with disabilities are living longer and striving to enjoy productive, self-directed lives, making the need for future financial planning more critical than ever before. However, most adults with disabilities do not have a plan in place to secure their future financial wellbeing due to numerous personal, systemic, and societal barriers. NLCDD received funding from the May and Stanley Smith Charitable Trust to investigate the current state of future financial planning by exploring the literature and services available; and conducting a research study to reveal challenges, facilitators, and perspectives of people with disabilities, their families, and experts in the disabilities, legal, and financial planning fields.