Reports
The National Leadership Consortium often conducts national and regional research for grant funded projects which result in reports packed with information aimed at advancing the rights, services, and supports for people with disabilities. Read our research about the important topics of self-directed services and supports, future financial planning for people with disabilities, and more in our reports.
Enhancing Services for People with Co-Occuring Support Needs in Washington State
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.
Advancing Community Based Services
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.
Facilitators and Obstacles To Community Services and Supports Report
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.
Spring 2023 LEAD Program Evaluation: Feedback and Findings
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. The Spring 2023 cohort of LEAD included 15 participants who attended two in-person and ten virtual sessions from March 14 through May 31, 2023. Participants engaged in 52 hours of training consisting of small and large group discussions, self and organizational assessments, experiential exercises and simulations, expert guest speakers, an individual leadership development process, and a group resource development process. The LEAD training will continue in Delaware, with each cohort benefitting from the evaluations from previous cohorts. Read more about the program and key findings from our comprehensive evaluation of the training in the report.
External Evaluation of Monitors with Disabilities’ Experience with the Transition to Virtual Monitoring for Independent Monitoring for Quality (IM4Q) in Pennsylvania 2022 Report
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.
In 2022, The National Leadership Consortium on Developmental Disabilities was funded by the Institute on Disabilities at Temple University to conduct an external evaluation to understand the transition from in-person to virtual IM4Q monitoring that will inform future training and accessibility for Monitors with disabilities.
Future Financial Planning for People with Disabilities, What's Working and What's Not
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.
To address this discrepancy, the National Leadership Consortium on Developmental Disabilities 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.
Recommendations Framework
A Recommendations Framework was developed based on this project with the aim of informing and guiding the standards, practices, and accessibility of family future and financial planning and support services for people with disabilities. The framework suggests structures for beneficiary-centered best practices in supporting family future financial planning, a repository that provides up-to-date resources and information on future planning for families and providers, an oversight entity to offer guidance to families and providers uphold best practices in the field, and sustainable funding for such an entity’s ongoing advocacy of national quality standards.
Download Recommendations Framework
Investigating the Impact of Covid-19 on Future Financial Planning for People with Disabilities
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. Findings showed that the pandemic intensified existing economic standings, with some facing more systemic and personal barriers that negatively impacted their ability to engage in future financial planning, while others were afforded more time and money to plan for their futures. Recommendations for government entities and the financial, legal, and disabilities fields are presented.
I/DD Provider Survey on Self-Directed Services and Supports
In 2018, the National Leadership Consortium conducted a national survey of service providers to better understand how providers are supporting adults to lead self-directed lives and the barriers and catalysts to such supports. The survey was initiated by the Spark! Initiative, an Optum Group, which is comprised of representatives of more than 25 organizations focused on developing a variety of resources and strategies to address barriers and support a national shift towards self-directed services and supports. The I/DD Provider Survey on Self-Directed Services and Supports included questions about barriers and facilitators to self-direction, agency practices of self-direction, and individual values about self-direction. The 475 respondents ranked barriers and facilitators to better understand what holds agencies back from or assists them in providing self-directed services. They were also asked to share agency practices and values around self-direction, to better understand how agencies operate to provide self-directed services and supports. Recommendations for state and federal policymakers, Managed Care Organizations, provider agencies, and people with I/DD and their families are presented.
Download 'Final IDD Provider Survey on Self-Directed Services and Supports Report'
Download 'IDD Provider Survey Executive Summary'