Research and Policy

• 2022 Kids Count Data Book: State Trends in Child Well-Being (2022) (50-page PDF) – A state-by-state effort funded by the Annie E. Casey Foundation (AECF) to track the status of children across the United States.
• 2023 Annual Disability Statistics Compendium (177-page PDF) – One of the five publications included in the Institute on Disability’s (NH UCEDD) Annual Disability Statistics Collection – a summary of statistics about people with disabilities and about the government programs which serve them.
• Advancing Data Equity to Improve Health Equity for People With Disabilities. Policy Brief (2023) (7-page PDF) – Policy brief by Michelle Fong, a 2023 NH-ME LEND trainee and MPH student at the University of New England. Data equity is vital to health equity for people with disabilities (PWD) and to powering effective and efficient agency- and community-driven action. Data biases lead to uninformed decision-making and resource allocation that create and sustain barriers to care for PWD.
• AHEAD (Association on Higher Education and Disability) Policy Agenda/Platform (2022) – Outlines the details of AHEAD’s positions on policy issues that ensure full, effective participation by individuals with disabilities in every aspect of the postsecondary experience.
• Annual Report on People with Disabilities in America: 2023 (26-page PDF) – From the Rehabilitation Research and Training Center on Disability Statistics and Demographics (StatsRRTC). Tracks the progress of people with disabilities using key social and economic indicators and “make the call” (for each indicator) as to whether an increase or decrease was detected.
• Association of University Centers on Disabilities (AUCD) Disability Policy News. Weekly newsletter that highlights the important policy updates related to the disability community. Subscribe to AUCD Disability Policy News.
• Autism and Developmental Disabilities Monitoring (ADDM) Network – The ADDM Network is a program funded by the CDC to collect data to better understand the number and characteristics of children with autism spectrum disorder (ASD) and other developmental disabilities living in different areas of the United States.
• Autism and Developmental Disabilities Monitoring (ADDM) Network Community Report on Autism 2023 – A Snapshot of Autism Spectrum Disorder among 4-year-old and 8-year-old Children in Multiple Communities across the United States in 2023. An easy-to-read summary.
• Autism and Developmental Disabilities Monitoring (ADDM) Network 2024 Fact Sheet (2-page PDF) – 2024 Fact Sheet from the ADDM Network funded by the CDC.
• Expanding the Use of Remote Supports for People with Intellectual and Developmental Disabilities: An Interdisciplinary Working Group Report (2023) (17-page PDF) – Recognizing the value of technology in enhancing the connectivity, inclusion, and personal freedom of people with intellectual disability and/or developmental disabilities, why isn’t it utilized more often in service delivery? What are the barriers to the usage of technology? What technology solutions hold the most promise? And what are actionable steps that could be adopted by states, service providers, case managers, and other support staff and families to accelerate the adoption of technology, specifically remote supports?
• From Adolescence to Adulthood: A Blueprint for Helping Maine’s Youth Succeed​ (2018) (18-page PDF) – Policy brief from the John T. Gorman Foundation to improve public understanding of Maine youth and young adults who are economically disadvantaged, homeless or involved with the state’s foster care or juvenile justice systems. Unique obstacles and promising approaches for this underserved group are discussed.
• Impact: Feature issue on Engaging Communities Underrepresented in Disability Research (Winter 2023) – Published by the Institute on Community Integration (MN UCEDD), this issue brings attention to the lack of data and knowledge about the interests, needs, identities, challenges, resilience, and outcomes of people with disabilities from minoritized racial, ethnic, cultural, and linguistic communities.
• Individuals with Disabilities Education Act (IDEA) Workforce Shortage – Policy brief by the 2022-2023 cohort of New Hampshire-Maine Leadership Education in Neurodevelopmental and Related Disabilities (NH-ME LEND) Program Trainees. The Individuals with Disabilities Education Act (IDEA), our nation’s special education law, ensures special education and related services to children with disabilities. One in every seven students in the United States receives special education services through the IDEA, requiring a large, highly qualified special education workforce to support students’ rights to a free and appropriate public education (FAPE). Special education personnel shortages and attrition rates negatively affect access to FAPE. These shortages are directly related to inadequate pay and training which, in turn, leads to difficulty in recruiting and retaining interdisciplinary IEP teams.
• Interagency Autism Coordinating Committee (IACC) 2020 Summary of Advances in Autism Research (2022) (45-page PDF) – This publication provides short, plain language summaries of the top 20 advances in autism biomedical and services research selected by members of the IACC. A 2-page Easy Read Version is also available.
• A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021 (2022). Kaiser Family Foundation Issue Brief. Shortages of direct care workers may continue to create problems for states seeking to reduce the number of people on waiting lists.
• Maine Shared Community Health Needs Assessment (2022) – Published by the Maine DHHS, Maine CDC, reports are available by county and/or as a statewide report.
• Mind the Gap: A White Paper on Maine’s Missing COVID-19 Surveillance Data, How They Perpetuate Health Disparities for Maine Citizens with Disabilities, and What Can be Done to Increase Maine’s Public Health Data & Service Equity (2023) (28-page PDF). A white paper by Michelle Fong, a 2023 NH-ME LEND trainee and MPH student at the University of New England. Equitable health data represents all populations and can be linked to their common characteristics. Maine’s Covid-19 data can be disaggregated by gender, race, ethnicity, and age, but not by disability status or type. It is an example of inequity in data collection, or a data gap, that prevents analysis of pandemic health outcomes for Mainers with disabilities.
• National Council on Disability Framework to End Health Disparities of People with Disabilities (2022) (15-page PDF) –  This policy brief provides rationale for the need of an all-of-government approach to achieve health equity in the United States and our territories for the largest unrecognized minority group in this country, the over 61 million people with disabilities, and sets forth a framework to achieve health equity for all people with disabilities.
• NIDILRR Research In Focus: Study offers insights to barriers to paid employment facing youth with severe disabilities (2023) – In a recent National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) funded study, researchers looked at challenges that youth with severe disabilities had in finding employment. Specifically, they wanted to know what parents, educators, agency staff, employers, and school district leaders felt were the factors hindering youth with severe disabilities from accessing paid work.
• National Trends in Disability Employment (nTIDE) – On the first Friday of every month, corresponding with the Bureau of Labor Statistics jobs report, the national Trends in Disability Employment (nTIDE) team offers a live broadcast via Zoom Webinar to share numbers and the latest news about disability employment. From the Center for Research on Disability (Kessler Foundation and the University of New Hampshire Institute on Disability (NH UCED).
• The Role of Medicaid for Children with Special Health Care Needs and Disabilities (2022) (2-page PDF) –  Policy brief by the 2021-2022 Cohort of New Hampshire-Maine Leadership Education in Neurodevelopmental and Related Disabilities (NH-ME LEND) Program Trainees. University of New Hampshire, Durham; and University of Maine, Orono.
• State of the States in Intellectual and Developmental Disabilities: State Profiles for IDD Spending During Fiscal Years 1977-2019 (2022) – From the Kansas University Center on Developmental Disabilities (KS UCEDD).
• Tuesdays with Liz: Disability Policy for All (YouTube) – A video series highlighting current issues in disability policy. It is hosted by Liz Weintraub, a long-time disability advocate, and produced by the Association of University Centers on Disabilities (AUCD)

Updated: 2/18/25