Research & Statistics

In a report issued in the December 2008 Current Population Reports the U.S. Census Bureau reported that of the 291.1 million people in the 2005 population of the United States, 54.4 million, or 18.7 percent, reported some level of disability, and 35 million (12.0 percent of all people) reported a severe disability. This link opens a PDF document.

Report from the National Institute on Drug Abuse examines the connection between drug addiction and other mental illness.

Materials from the U.S. Department of Health and Human Services Office of Disability, Aging and Long-Term Care Policy's first "Expert" meeting.

AARP's Beyond 50 report presents an agenda for examining, building and retrofitting communities to support successful aging. Livable Communities: An Evaluation Guide is also available. Both documents are in .pdf format.

Materials from the National Conference on Managed Care for Persons with Disabilities.

Assesses a variety of longitudinal models to examine the effect of different types of caregiver burden on outcomes important to policymakers, nursing home admissions, hospital use and stability of the family and formal care networks.

Presents an empirical analysis of the extent to which acute and long-term care cause disabled elderly persons to incur catastrophic costs.

Links to data and reports from the U.S. Census on the elderly (65+) population.

Organization aims to enhance health professions education and to improve access for people with disabilities to health, health education and health care services.

Facilitates the sharing of information and expertise in rehabilitation research between the United States and other countries and maintains an international rehabilitation research database that enables users to locate research in their field by country.

Information and links to CDC's work with birth defects and developmental disabilities, prevention of disabling injuries and the health and well-being of individuals with disabilities.

Project uses analyses of the 1984-1999 National Long-Term Care Survey and the Medicare Current Beneficiary Survey to understand the nature of recent declines in elderly disability rates and their implications for health care utilization.

Examines the definition of developmental disabilities using information collected in SIPP and provides information about the number and characteristics of persons identified as having developmental disabilities.

Provides analysis of Medicaid expenditures for children receiving Supplemental Security Income (SSI) benefits.

Case study of four well-regarded managed care organizations which found that they made numerous innovations to improve care delivery for elderly Medicare beneficiaries with chronic illnesses and disabilities.

Compares and contrasts alternative approaches to administering programs, financed under the Medicaid personal care services optional benefit, that make attendant services available to low-income elderly and disabled persons in need of help with daily living tasks.

Explores the extent to which changes in medication use account for improvements in functioning among older Americans.

Presents a conceptual framework to guide the development of measures of care coordination that would be both feasible to apply and meaningful in assessing the performance of Medicaid managed care organizations (MCOs) that enroll people with disabilities.

Compares costs of care for children with 11 selected chronic conditions with costs of care for children without any of these conditions and identifies whether selected demographic variables are associated with cost variation.

Designed to answer current questions surrounding long-term care insurance.

Results from a telephone survey conducted to assess consumer preferences for a cash option in Arkansas and describes how findings from the current four-state "Cash and Counseling" project can inform consumer information efforts and policymakers.

Information on managed care as it affects children with disabilities.

Describes a system of diagnostic categories Medicaid programs can use for adjusting capitation payments to health plans that enroll people with disability.

Recommendations from a mini-conference of the 2005 White House Conference on Aging. Document is in .pdf format, but is also available in Word format.

Information for people with disabilities and healthcare providers on maintaining health standards.

Data on children with disabilities from the 1990 Survey of Income and Program Participation (SIPP), a nationally representative survey of the civilian non-institutionalized population.

Outcomes of an expert meeting to advise the U.S. Department of Health and Human Services on policy issues and available data related to several populations of persons with disabilities: working age adults, children, persons age 65 and older and special populations (e.g., persons with developmental disabilities, persons with mental illness).

Uses data from the 1989 National Health Interview Survey to estimate health insurance coverage of children and non-elderly adults with disabilities and their utilization of physician and hospital care as a function of health insurance status.

Summarizes basic data on the disabled elderly, including the types of disabilities and probability of being disabled.

Investigates the effects of primary caregivers' employment status on the amount of help that disabled elders receive.

Analyzes the health care needs of elderly people with disabilities.

This entry of the Encyclopedia of Financial Gerontology contains information about the Americans with Disabilities Act and nine major federal programs targeted on disability which serve sizable proportions of the non-elderly population aged 50 and over.

Report from the Substance Abuse and Mental Health Services Administration examines ways to prevent and eliminate homelessness among people with mental illness and substance use disorders.

Focuses on functional transitions at advanced ages and the impact of long-term care services on these transitions.

Comprehensive information about future long-term care needs in the U.S.

Series of articles and findings from the National Long-Term Care Channeling Demonstration.

Describes a successful, large-scale case disability allowance program and examines whether recipients of a cash allowance for long-term care are worse off than similar persons who receive in-kind subsidies.

Findings of an analysis of expansions in the income threshold for the Supplemental Security Income (SSI) work incentive program and analysis of the employment, insurance and program participation status of people with disabilities.

Examines empirical evidence on health care coverage, employment and public program participation among people with disabilities.

In May 2005 the Secretary of the Department of Health and Human Services, Michael O. Leavitt, established a Medicaid Commission to advise the Secretary on ways to modernize the Medicaid program so that it can provide high-quality health care to its beneficiaries in a financially sustainable way. On December 29, 2006 the Commission issued its final report.

Report reviews, summarize and discusses the significance of available research findings on the frontline long-term care workforce since 1999, in both home and community-based and nursing home settings.

Results of a focus group of academicians, researchers and service providers on the topic of the implications of the movement toward managed health care for people with physical and mental disabilities.

Research on public and employer-based plans as well as self-insured plans.

Examines the health and disability status of AFDC families using information gathered in the 1984 Survey of Income and Program Participation and assesses the implications for welfare work programs.

Links to data and reports from the U.S. Census on health insurance.

Examines questions concerning the delivery of services for medically fragile children.

Efforts to include people with disabilities in the Healthy People initiative established by the U.S. Surgeon General in 1979.

Focuses on home- and community-based long-term care, including an overview of long term care in the U.S. and a summary of home-care arrangements.

Longitudinal inpatient hospital care and ambulatory care utilization, expenditure and quality indicator data, includes both national, state and children-specific data sets.

Examines whether significant differences occur when publicly funded supportive services for the elderly and disabled are provided through a consumer-directed program versus a professional management model.

March 17, 2008 report from the National Council on Disabilities (NCD) that looks at barriers and solutions relating to people with psychiatric disabilities fully participating in their communities.

Provides basic descriptive statistics on the primary informal caregivers of disabled private long-term care insurance policyholders who have accessed long-term care benefits and are living in the community.

October 2008 report from AHRQ that describes models of integrated care used in the United States, how integration of mental health services into primary care settings or primary health care into specialty outpatient settings impacts patient outcomes and barriers to sustainable programs, use of health information technology (IT), and reimbursement structures of integrated care programs. The complete report can be downloaded in PDF format.

Includes a discussion of the implications of interdisciplinary training for trends in managed care, case studies of nine training programs and a review of the general literature on interdisciplinary training.

A guide for state, territorial, tribal and local emergency managers to use in the development of emergency operations plans (EOPs) that are inclusive of the entire population of a jurisdiction of any size. This guide specifically provides recommendations for planning for special needs populations. The entire document can be downloaded in text or .pdf formats.

Public policy center that works to increase opportunities for people with disabilities by identifying barriers to participation in society and promoting best practices and universal design.

Examines whether today's elderly are healthier than previous generations or if increased longevity comes with increased risk of disability and reduced quality of life.

Updates an earlier summary of the National Long-Term Care Surveys entitled "National Long-Term Care Surveys (1982, 1984, 1989)."

Data that confirms that the board and care industry plays a significant role in the housing and care of the frail elderly and other functionally disabled populations.

Analyzes the Medicaid experience of children in California who had at least $25,000 in claims in 1983.

Information on a variety of projects to promote knowledge on the experiences of disabled populations in managed care in public health care systems such as Medicaid and Medicare, as well as in employer-based and self-insured plans.

Focuses on health care policy issues affecting children, including those with special health care needs and those from low-income families.

Describes 11 recent surveys with regard to the size of the elderly population with ADL disabilities and how their ADL differences can effect policy analysis.

Resource designed to continually provide policymakers, health care administrators, businesses and others with timely, comprehensive information about health care use and costs in the United States.

Designed to support efforts to measure and improve Medicaid managed care organization performance for people with disabilities.

Periodic briefings from the Substance Abuse and Mental Health Services Administration (SAMHSA) regarding trends in mental health systems of care.

This GAO report examines federal disability programs, how to strengthen partnerships and coordination for modernizing programs, and ways to modernize measures of program success. The report also reviews next steps for achieving a 21st century disability policy. This link opens a PDF document.

Examines the factors associated with privately insured and non-privately insured groups and identifies the role played by long-term care insurance.

Summary of nine research projects funded by the the National Institute of Mental Health (NIMH) that focus on autism spectrum disorders.

Sponsored by the National Institute of Mental Health provides research, training and information focused specifically on American Indian and Alaska Native populations.

Part of the Centers for Disease Control and Prevention that is the nation's principal health statistics agency. The Center compiles statistical information to guide actions and policies to improve the health of Americans.

Clearinghouse of information on physical activity for people with disabilities for consumers, practitioners and disability and service organizations.

Report issued on January 15, 2008 by the National Council on Disability (NCD) that examines employment, housing, education, transportation and other federal policies that affect people with disabilities.

Results from a comprehensive federal survey of disability in the United States.

Presents an overview of the results of the National Long-Term Care Channeling Demonstration, conducted in ten states to test the impact of a community-based system of long-term care upon the functionally disabled elderly.

The National Nursing Home Survey (NNHS) is a continuing series of national sample surveys of nursing homes, their residents and their staff.

Supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. The Facts & Figures at a Glance provides information on incidence rate, gender, age and other statistics regarding people with spinal cord injuries.

Americans expressed serious concerns regarding health care in a new report released today by the Department of Health and Human Services. The report, Americans Speak on Health Reform: Report on Health Care Community Discussions, summarizes comments from the thousands of Americans who hosted and participated in Health Care Community Discussions across the country and highlights the need for immediate action to reform health care.

Information on a move to classify people with a "disabling" condition as healthy regardless of the body part involved.

Compares the health characteristics of persons with and without disabilities.

Examines the long-term care service needs of persons with severe mental illness in a generic long-term care financing and service delivery system, as was proposed in the home and community-based services provisions of the Health Security Act.

A report of the Surgeon General from the National Center for Chronic Disease Prevention and Health Promotion.

Examines how states have used Medicaid's Personal Care Services Optional Benefit, assesses whether coverage regulations for these services be revised and discusses the ways in which the program might affect public debate about the expansion of public funding for long-term care.

Estimates of the number of people with disabilities or with long-term care needs are derived for both the community and institutionalized population for children, working age adults and the elderly.

2003 report includes recommendations on how to improve the mental health system in the U.S.

Examines how many disabled elderly are at risk because they do not receive the assistance they need in basic self-maintenance activities.

Conducted to better understand the role of private insurance plans in caring for people with chronic conditions and disabilities.

The U.S. National Library of Medicine's free digital archive of biomedical and life sciences journal literature.

Demonstrates the variability in estimates of disability in the U.S. elderly population as a function of differing definitions of physical disability and cognitive impairment.

A National Institute on Disability and Rehabilitation Research (NIDRR) Rehabilitation Engineering Research Center dedicated to using technology to promote more healthy, active lifestyles for people with disabilities.

AARP report Balancing Act: State Long-Term Care Reform, examines the extent to which states have balanced the delivery of Medicaid-funded long-term services and supports to people in their homes and in institutions, with a primary focus on older people and adults with physical disabilities. This link opens a PDF document.

RePORT, a website of the National Institutes of Health (NIH), provides a single access point to quickly and easily find data, including information on NIH expenditures and the results of NIH-supported research. The site includes searchable databases of funded projects and research reports.

Information on a Substance Abuse and Mental Health Services Administration (SAMHSA) center that works to counter stigma and discrimination associated with mental illness by gathering information and research and providing technical assistance and support.

Provides a summary of the health insurance issues affecting employment of people with disabilities, including a discussion of the current programs and policies that are available.

Statistics from the Substance Abuse and Mental Health Services Administration (SAMHSA) on the use of mental health services by people with serious psychological distress.

Examines the impact of payment policy changes on disabled Medicare beneficiaries' satisfaction and quality of life with a view toward formulating inferences that will inform national home health care policy for the disabled.

Focuses on supportive services, a subset of health-related services that are used almost exclusively by children with disabilities, in order to sharpen the focus on the differential need of children with disabilities.

Materials from the 2006 StatsRRTC (Rehabilitation Research and Training Center) State-of-the-Science Conference. Includes trends and statistics on the employment, health and socio-economic status of people with disabilities.

Examines the early implementation experiences of states that have opted for a Medicaid buy-in for people with disabilities.

The lessons in this module present fundamental information about mental illnesses. Through inquiry-based activities, students gain a better understanding of what mental illnesses are and what they are not.

December 15, 2005 report from the National Council on Disability provides recommendations on long-term services and supports for people with disabilities. This links opens a Word document.

Examines the feasibility of comparison studies of long-term care in the United States and Japan that would be useful to both countries in understanding the current and evolving needs and resources related to the frail and disabled elderly.

May 12, 2006 press release from the U.S. Census Bureau indicating that more than 50 million Americans have some level of disability, with 12 percent reporting a severe disability.

The world's largest biomedical library.

Designed to encourage use of the Medicaid program in a manner that minimizes reliance on institutions and maximizes community integration in a cost-effective manner.

A report issued on February 26, 2008 by the National Council on Disability (NCD). The report examines the unique challenges older youth with disabilities face as they negotiate the foster care system.