Projects of National Significance (PNS) focus on the most pressing issues affecting people with developmental disabilities and their families, creating and enhancing opportunities for these individuals to contribute to, and participate in, all facets of community life. Through PNS, ACL supports the development of national and state policy and awards grants and contracts that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.
Current PNS priorities include improving state employment policies and employment outcomes of individuals with developmental disabilities, collecting data on family support and service outcomes, and providing technical assistance and training for disability network entities. One project is currently collecting and analyzing data on individual and service outcomes and family services and supports.
Short-Term Projects, Long-Term Differences
Projects are typically short term (1-5 years) and address critical issues. PNS funds have supported families, increased community living options, assisted with family leadership development, and increased opportunities for involving self-advocates in systems change initiatives.
Supporting Emerging Needs
PNS projects enable more rapid response to emerging issues by targeting unserved or underserved areas, with the intent of eventually implementing programs on a broader, national level. Program activities include helping individuals develop self-advocacy and leadership skills, creating opportunities for economic development in communities, and developing initiatives to improve individuals’ employment outcomes. For example, the Autism NOW project collects and disseminates the most current information and resources on autism through its website to empower individuals and their families.
Ongoing Longitudinal Data Collection
PNS funds support national long-term data collection projects that help policymakers, service providers, and individuals with developmental disabilities and their families make the most informed policy and individual care decisions. These studies allow for an overarching, higher-level evaluation of the conditions of individuals with developmental disabilities in the United States. Learn more.
- Bridging the Aging and Disabilities Networks
ACL awarded a Project of National Significance on “Bridging the Aging and Disabilities Networks” to the National Association of Councils on Developmental Disabilities (NACDD) in the estimated amount of $398,384.00 every year for the period of September 1, 2021, to August 31, 2026.
The grantee will develop a Community of Practice designed to build capacity across and within states’ aging and disability networks that will focus on creating culturally competent systems to support individuals with intellectual and developmental disabilities (I/DD) and their families to improve planning to address their individual needs, goals, and preferences across the lifespan.
NACDD is partnering on the project with the Institute on Disability and Human Development at the University of Illinois Chicago, Lurie Institute for Disability Policy at Brandeis University, The Arc, and US Aging.
Contact Larissa Crosssen with questions about this project.
- Empowering Youth with Intellectual and Developmental Disabilities to Manage Their Healthcare Transitions
ACL has awarded a new Project of National Significance on "Empowering Youth with Intellectual and Developmental Disabilities to Manage Their Healthcare Transitions" to Family Voices in the estimated amount of $480,000 every year for the period of September 1, 2021, to August 31, 2026.
The grantee will create and maintain a national, person-centered, culturally competent resource center to empower youth with intellectual and developmental disabilities (ID/DD) in directing their own healthcare transitions from pediatric to adult models of care. The center will work to increase self-determination, independence, and quality of life for youth with ID/DD as they transition into adult models of care.
Family Voices is partnering on the project with Got Transition, SPAN Parent Advocacy Network, University of Missouri Kansas City, Institute for Human Development (UMKC-IHD), and the Waisman Center at the University of Wisconsin-Madison.
Contact Dana Fink with questions about this project.
- Self-Advocacy Resource and Technical Assistance Center
ACL has awarded a grant to Self-Advocates Becoming Empowered (SABE) to further expand the "Self-Advocacy Resource and Technical Assistance Center (SAR-TAC)". As a Project of National Significance, SAR-TAC will receive an award of $400,000 every year from September 1, 2021, to August 31, 2026.
SAR-TAC will continue and grow as a national, person-centered, culturally competent resource that empowers and supports the national self-advocacy movement for people with intellectual and developmental disabilities (ID/DD). This center will serve as a national resource that:
- Further strengthens statewide and local self-advocacy organizations;
- Creates and disseminates self-advocacy resources;
- Provides leadership development opportunities for people with ID/DD; and
- Strengthens the network of civil rights organizations working on behalf of people with ID/DD.
SAR-TAC will be guided by principles of independent living, self-determination, and intersectionality.
An advisory committee comprised entirely of people with ID/DD will guide the work of SAR-TAC. The grantee will work with several partners, including other federal agencies, state and local government agencies, and nonprofit organizations. Through these partnerships the grantee will share resources and provide assistance to these organizations on making their information accessible to people with ID/DD. Additional activities include: maintaining and increasing the resources on the website; maintaining a leadership fellowship program; and holding webinars and videos meetings open to the public.
Contact Katherine Cargill-Willis with questions about this project.
- Community Collaborations for Employment
Many students and youth with disabilities do not have the same opportunities as their peers without disabilities to pursue higher education, training, and careers. Multiple complex systems exist to provide youth with disabilities with the supports, services, and resources they need to successfully transition into their post-secondary life. Yet, despite the various programs available, competitive integrated employment rates for individuals with intellectual and developmental disabilities (I/DD) are alarmingly low.
In 2021, ACL funded seven Community Collaborations for Employment (CCE) grants through its Projects of National Significance program. The purpose of the CCE grant program is to increase and enhance collaborations across local systems to support a coordinated, smooth experience and improve outcomes for youth with I/DD as they transition between school and working in the community. Each grantee implements their project using the four key grant stages: establish and maintain a community collaboration pilot, conduct a community landscape analysis, develop a community collaboration employment transition plan, and implement the community collaboration employment transition plan.
In 2022, ACL funded an evaluability assessment of the CCE grant program. The aim of the evaluability assessment was to review the CCE grant model and offer guidance for the evaluation design. The assessment included profiles of each of the CCE grantees:
- Virginia Commonwealth University (VA)
- University of Massachusetts Boston (MA)
- Regents of the University of Minnesota (MN)
- The University of North Carolina at Chapel Hill (NC)
- Collin County MHMR Center (TX)
- University of Kansas Center for Research, Inc. (KS) Arizona Board of Regents
- University of Arizona (AZ)
Following the evaluability assessment, ACL funded a cross-site evaluation for the CCE grant in September 2022. This cross-site evaluation seeks to understand what works in transition services and activities to increase the number of youth with ID/DD in finding and keeping employment, graduating from education programs, and living and fully participating in their communities.
Contact Larissa Crossen with questions about this project.
- Alternatives to Guardianship Youth Resource Center
The Administration for Community Living (ACL) awarded a cooperative agreement to the University of Massachusetts Boston to implement a national Alternatives to Guardianship Youth Resource Center. The Alternatives to Guardianship (AtG) is a new initiative focused on diverting high school students with intellectual and developmental disabilities (ID/DD) away from guardianship to supported decision making (SDM), which allows individuals with disabilities to make decisions for themselves and choose the level of support they need from people and organizations they trust.
This cooperative agreement awards an anticipated $1,499,998 during a five-year project period, from September 1, 2020, through August 31, 2025, under funding from Projects of National Significance. The Institute of Community Inclusion at the University of Massachusetts Boston and its partners will work to establish the Center for Youth Voice, Youth Choice on Alternatives to Guardianship (CYVYC) to increase the use of guardianship alternatives by youth with ID/DD by conducting research, creating a sustainable model for capacity building and resource dissemination, and forming a replicable Youth Ambassadors Program (YAS) that trains youth with ID/DD in leadership development and mentoring skills. YAS participants will serve as mentors to other youth with ID/DD and their parents or guardians and is a key component of the resource center.
CYVYC partners include legal advocacy organizations, The Center for Public Representation, Georgia Advocacy Office, and consultants from the Harvard Law School Project, national self-advocacy organization Self Advocates Becoming Empowered, and systems change experts Human Services Research Institute, as well as other subject matter experts including educators, parents, and advocates.
- Strengthening the Healthcare Workforce and Addressing Health Disparities among People with Intellectual and Developmental Disabilities
The Administration for Community Living (ACL) has awarded a $1.75 million cooperative agreement to Rush University that will fill the gaps in health professions training programs by embedding disability-related content on the health care of individuals with intellectual and developmental disabilities (ID/DD) into interprofessional health education curriculum.
Many health professions schools and licensing exams do not include disability-related content about the health care needs of individuals with intellectual and developmental disabilities (ID/DD) into their curriculum. The proposed project will be introducing an interprofessional health education curriculum for pre- and post-licensure health care students.
Rush University, College of Nursing (PI Sarah Ailey, PhD, RN, PHNA-BC, CNE, CDDN) and its core partner institutions will start this important work through the Partnering to Transform Health Outcomes with Persons with Intellectual Disabilities and Developmental Disabilities (PATH-PWIDD) program: The core partners are:
- Rush University, College of Nursing (PI Sarah Ailey, PhD, RN, PHNA-BC, CNE, CDDN),
- St. John Fisher College, Golisano Institute for Developmental Disability Nursing (PI – Dianne Cooney-Miner, PhD, RN,CNS, FAAN);
- University of Illinois at Chicago, HealthMattersTM Program (PIs – Beth Marks, PhD, RN, FAAN and Jasmina Sisirak, PhD, MPH);
- University of Minnesota, Institute on Community Integration (PIs – Brian Abery, PhD and Renáta Tichá, PhD); and,
- Villanova University, M. Louise Fitzpatrick College of Nursing (PI – Suzanne Smeltzer, EdD, RN, ANEF, FAAN).
The PATH-PWIDD program will work with a National Cross-Sector Consortium, their networks, and committees to address the lack of content about individuals with ID/DD in current interprofessional health education curriculum. Through their work, Rush aims to increase the following:
1. the number of health professional students trained in ID/DD;
2. student knowledge of the health care needs of individuals with ID/DD;
3. the number of health professionals feeling prepared to provide health care to individuals with ID/DD; and,
4. the capacity of health professions faculty to train their students about the health care needs of individuals with ID/DD.
The PATH-PWIDD program will examine what trainings and curriculum currently exist within interprofessional health education and identify gaps. Rush intends to impact more than 30 institutions and to train 15,000 students during the five-year project. PATH-PWIDD program includes active roles for advocates with ID/DD and their families during the entire project period.
The PATH-PWIDD program adds to ACL’s ongoing work to improve healthcare equity. It will complement the Center for Human Dignity funded last September. Both grants aim to increase the life expectancy of people with disabilities and are funded under Projects of National Significance. This award is from September 1, 2020, to August 31, 2025.
- Living Well
During the last two decades, the number of individuals with intellectual and developmental disabilities (I/DD) living in community settings and receiving home- and community-based services (HCBS) increased dramatically. While this led to better outcomes, including people with I/DD making more of their own choices and being a part of the community, there are great variations in the accessibility of quality HCBS across the country.
In 2017 and 2018 ACL awarded Living Well grants to help develop and test model approaches for enhancing the quality, effectiveness, and monitoring of home- and community-based services (HCBS) for people with developmental disabilities. These Model Approaches for Living Well grants, awarded as Projects of National Significance by ACL’s Administration on Disabilities, are focused on building the capacity of HCBS systems and enhancing community monitoring to prevent abuse, neglect, and exploitation.
ACL funded a cross-site evaluation of all eight grantees from cohorts one and two in 2018. Each grantee has designed one or more models integrating community monitoring and capacity building with the goal of enhancing health, safety, integration, and independence of individuals with I/DD living in the community. The cross-site evaluation of the Living Well grants focused on eight key features, organized into three categories. The evaluation has produced the first annual report broken into several interrelated products:
- Executive Summary
- Volume I: Introduction and Grantees
- Volume II: Findings
- Volume III: Methodology
- Volume IV: Conclusion and Next Steps
- Living Well State Profiles
- Living Well Emerging Practices
- Living Well Final Report Tables
In the second year of the evaluation, ACL continued to follow the eight Living Well grantees to understand their work around community monitoring and capacity building in service to promote the health, safety, and independence of their I/DD communities. As with the prior year, the report is broken into several components and this year also includes briefs on areas selected by the Living Well grantees as areas of particular interest – strategies to address COVID-19, Self-Advocate Engagement, and Community Monitoring.
- Executive Summary
- Volume I: Introduction
- Volume II: Grantee Profiles
- Volume III: Cross-Site Analysis and Conclusions
- Volume IV: Methodology
- Living Well State Profiles
- Brief: Strategies for Responding to the COVID-19 Pandemic
- Brief: Strategies for Self-Advocate Engagement
- Brief: Strategies for Improving Community Monitoring
In the third year of the evaluation, ACL continued to follow the eight Living Well grantees to understand their work around community monitoring and capacity building and further followed the grantees in their journey as they confronted the COVID-19 pandemic. The report consists of five volumes:
And three briefs:
- Strategies for Building Capacity of the Direct Support Workforce
- Strategies for Using Data Tools for Monitoring and Decision-Making
- Strategies for Developing Cultural and Linguistic Competency Across Systems