Research & Statistics
Addressing Liability Issues in Consumer-Directed Personal Assistance Services
African Americans & HIV/AIDS: Key Facts
Ageism in Healthcare: Are Our Nation's Seniors Receiving Proper Oral Health Care?
Agency for Healthcare Research & Quality (AHRQ)
A part of the U.S. Department of Health and Human Services, AHRQ supports research designed to improve the quality of health care, reduce its cost, improve patient safety, decrease medical errors and broaden access.
An Analysis of the Literature on Disease Management Programs
Background Paper on Personal Assistance Services & Related Services
Materials from the U.S. Department of Health and Human Services Office of Disability, Aging and Long-Term Care Policy's first "Expert" meeting.
Behavioral Interventions Effective for Preschoolers with ADHD
Beyond 50.02: A Report to the Nation on Trends in Health Security
Beyond 50.03: A Report to the Nation on Independent Living & Disability
Beyond 50.04: A Report to the Nation on Consumers in the Marketplace
AARP's Beyond 50 report presents a new 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.
Beyond 50: A Report to the Nation on Economic Security
Materials from the National Conference on Managed Care for Persons with Disabilities.
Biomedical Engineering (BME) & Research to Aid Persons with Disabilities
Caregiver Burden & Institutionalization, Hospital Use & Stability of Care
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.
Catastrophic Acute & Long-Term Care Costs: Risks Faced by Disabled Elderly Persons
Presents an empirical analysis of the extent to which acute and long-term care cause disabled elderly persons to incur catastrophic costs.
Census Bureau Data on the Elderly Population
Links to data and reports from the U.S. Census on the elderly (65+) population.
Census Bureau HIV/AIDS Surveillance
Links to on-going monitoring of the AIDS Pandemic and incidences of HIV.
Census Disability Data - State & County Information
Center for Disability Issues & the Health Professions at Western University of Health Sciences
Organization aims to enhance health professions education and to improve access for people with disabilities to health, health education and health care services.
Center for International Rehabilitation Research Information & Exchange
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 enable users to locate research in their field by country.
Centers for Disease Control & Prevention (CDC) Disability & Health Team
Descriptions of activities and research funded by the Disability and Health Team of the CDC's National Center on Birth Defects and Developmental Disabilities.
Centers for Disease Control & Prevention (CDC) Disability Page
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.
Centers for Disease Control & Prevention Health Statistics
Changes in Elderly Disability Rates: Implications for Health Care Utilization & Costs
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.
Children with Severe Chronic Conditions on Medicaid
Provides analysis of Medicaid expenditures for children receiving Supplemental Security Income (SSI) benefits.
Children's Mental Health: A National Action Agenda
Christopher & Dana Reeve Paralysis Resource Center - Spinal Cord Injury Statistics
Civil Rights of Institutionalized Persons Act: Has It Fulfilled Its Promise?
Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation
Considering Children with Disabilities & the State Children's Health Insurance Program
Constrained Innovation in Managing Care for High-Risk Seniors in Medicare + Choice Risk Plans
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.
Consumer-Directed Models of Personal Care: Lessons from Medicaid
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.
Contribution of Changes in Medication Use to Improvements in Functioning among Older Adults
Explores the extent to which changes in medication use account for improvements in functioning among older Americans.
Coordination of Care for Persons with Disabilities Enrolled in Medicaid Managed Care
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.
Cornell University Links to Disability Statistics
Cornell University Links to Disability Statistics
Cost of Care for Medicaid-Enrolled Children with Selected 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.
Determining Consumer Preferences for a Cash Option: Arkansas Survey Results
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.
Developing Integrated Managed Care Systems for Children with Disabilities
Information on managed care as it affects children with disabilities.
Developmental Disability Research Centers (DDRCs)
Diagnostic Risk Adjustment for Medicaid: The Disability Payment System
Describes a system of diagnostic categories Medicaid programs can use for adjusting capitation payments to health plans that enroll people with disability.
Disabilities Issues Information for Journalists
Disabilities Issues Information for Journalists
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.
The home page to the Centers for Disease Control and Prevention (CDC) Disability and Health Team, with information for people with disabilities and healthcare providers on maintaining health standards.
Disability & Health State Chartbook 2006
Disability & Retirement: The Early Exit of Baby Boomers from the Labor Force
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.
Disability Data for Disability Policy: Availability, Access & Analysis
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).
Disability Status 2000: Table 3
Disability, Health Insurance Coverage & Utilization of Acute Health Services in the United States
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.
Disabled Elderly & Their Use of Long-Term Care
Summarizes basic data on the disabled elderly, including the types of disabilities and probability of being disabled.
Early Childhood Comprehensive Systems
Eldercare: The Impact of Family Caregivers' Employment on Formal & Informal Helper Hours
Investigates the effects of primary caregivers' employment status on the amount of help that disabled elders receive.
Elderly with Disabilities: At Risk for High Health Care Costs
Analyzes the health care needs of elderly people with disabilities.
Encyclopedia of Financial Gerontology: Federal Disability Programs
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.
Epidemiological, Demographic & Social Correlates of Disability among the Elderly
Focuses on functional transitions at advanced ages and the impact of long-term care services on these transitions.
Estimating the Prevalence of Long-Term Disability for an Aging Society
Comprehensive information about future long-term care needs in the U.S.
Evaluation of the National Long-Term Care Demonstration
Series of articles and findings from the National Long-Term Care Channeling Demonstration.
Evaluation of the Veterans Administration Housebound & Aid & Attendance Allowance Program
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.
Exploratory Study of Health Care Coverage & Employment of People with Disabilities: Final Report
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.
Final Report of the Medicaid Commission
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.
Financing Long-Term Care (LTC) for the Elderly
Finding Facts & Figures: Disability Data Resources
Findings on Frontline Long-Term Care Workers: A Research Synthesis 1999-2003
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.
Focus Group on Managed Care Systems for People with Disabilities
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.
Generic Drug Utilization Increasing
Government Research Looks at Effects of Managed Care
Research on public and employer-based plans as well as self-insured plans.
Health & Disability Status of Aid to Families with Dependent Children (AFDC) Families
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.
Health Care Facts & Statistics
Health Policy for Medically Fragile Children: An Analysis of Factors Impacting Care in Texas
Examines questions concerning the delivery of services for medically fragile children.
Healthy People 2010 Objectives for People with Disabilities
Efforts to include people with disabilities in the Healthy People initiative established by the U.S. Surgeon General in 1979.
Home & Community-Based Care: The U.S. Example
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.
Hospital Utilization, Expenditures & Quality Indicators
Longitudinal inpatient hospital care and ambulatory care utilization, expenditure and quality indicator data, includes both national, state and children-specific data sets.
In-Home Supportive Services for the Elderly & People with Disabilities
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.
Inclusive Livable Communities for People with Psychiatric Disabilities
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.
Informal Caregivers of Disabled Elders with Long-Term Care Insurance
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.
Informal Caregiving: Compassion in Action
Booklet about informal caregiving (unpaid care given voluntarily to ill or disabled persons by their families and friends).
Interagency Autism Coordinating Committee (IACC)
Interdisciplinary Education & Training of Professionals Caring for Persons with Disabilities
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.
International Center for Disability Information Data Tables
International Center for Disability Resources on the Internet
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.
International Evidence on Disability Trends among the Elderly
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.
Introduction to the National Long-Term Care Survey
Updates an earlier summary of the National Long-Term Care Surveys entitled "National Long-Term Care Surveys (1982, 1984, 1989)."
Keeping Track: National Disability Status & Program Performance Indicators
Law, Health Policy & Disability Center
Licensed Board & Care Homes: Preliminary Findings from the 1991 National Health Provider Inventory
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.
Longitudinal Analysis of High Cost Medicaid Children in California
Analyzes the Medicaid experience of children in California who had at least $25,000 in claims in 1983.
Major Depressive Episode among Youths Aged 12 to 17
Managed Care & People with Disabilities Research Project Descriptions
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.
Maternal & Child Health (MCH) Policy Research Center
Focuses on health care policy issues affecting children, including those with special health care needs and those from low-income families.
Measuring the Activities of Daily Living (ADL): Comparisons Across National Surveys
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.
Medical Expenditure Panel Survey (MEPS)
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.
Meeting the Long-Term Care Needs of the Baby Boomers
Mental Disorders in America: The Numbers Count
Mental Health Transformation Trends
Periodic briefings from the Substance Abuse and Mental Health Services Administration (SAMHSA) regarding trends in mental health systems of care.
Mental Health, Work & Mental Health Service Use Among Low-Income Mothers
Mental Health: Culture, Race & Ethnicity
Modernizing Federal Disability Policy
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. The entire report may be downloaded in .pdf format through this link.
Examines the factors associated with privately insured and non-privately insured groups and identifies the role played by long-term care insurance.
National Center for American Indian & Alaska Native Mental Health Research
Sponsored by the National Institute of Mental Health provides research, training and information focused specifically on American Indian and Alaska Native populations.
National Center for the Dissemination of Disability Research (NCDRR)
National Center on Disability & Journalism - Links
National Center on Physical Activity & Disability
Clearinghouse of information on physical activity for people with disabilities for consumers, practitioners and disability and service organizations.
National Disability Policy: A Progress Report
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.
National Health Interview Survey - 2005
National Health Interview Survey on Disability
Results from a comprehensive federal survey of disability in the United States.
National Institutes of Health (NIH) Clinical Center Physical Disabilities Branch
National Long Term Care Survey (NLTCS) Home Page
National Long-Term Care Channeling Demonstration: Summary of Demonstration & Reports
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.
National Spinal Cord Injury Statistical Center
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.
New Research to Help Youth with Mental Disorders Transition to Adulthood
New Standard for Assessing Health Status of People with Disabilities
Information on a move to classify people with a "disabling" condition as healthy regardless of the body part involved.
New York State Disability & Health Resources
Publications, statistics and other information and resources related to health and people with disabilities in New York State.
Office of Disability, Aging & Long-Term Care Policy
People with Disabilities: Their Health Care & Health Insurance
Compares the health characteristics of persons with and without disabilities.
Persons with Severe Mental Illness: How Do They Fit Into Long-Term Care?
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.
Physical Activity & Health for Persons with Disabilities
A report of the Surgeon General from the National Center for Chronic Disease Prevention and Health Promotion.
Policy Frameworks for Designing Medicaid Buy-In Programs & Related State Work Incentive Initiatives
Policy Issues Affecting the Medicaid Personal Care Services Optional Benefit
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.
Population Estimates of Disability & 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.
President's National Drug Control Strategy
Portion of a March 2004 report from the Office of National Drug Policy titled "Healing America's Drug Users: Getting Treatment Resources Where They Are Needed."
President's New Freedom Commission on Mental Health Report
Prevalence & Correlates of Unmet Need Among the Elderly with Disabilities
Examines how many disabled elderly are at risk because they do not receive the assistance they need in basic self-maintenance activities.
Primary Care Doctors May Overlook Elderly Patients' Mental Health
Private Payers Serving Disabled Individuals with Disabilities & Chronic Conditions
Conducted to better understand the role of private insurance plans in caring for people with chronic conditions and disabilities.
Promising Practices in Home & Community Based Services
The U.S. National Library of Medicine's free digital archive of biomedical and life sciences journal literature.
Publicly-Financed Home Care for the Disabled Elderly: Who Would be Eligible?
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.
Report on Private Health Insurance
Resource Center to Promote Acceptance, Dignity & Social Inclusion Associated with Mental Health
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.
Role of Health Insurance in Successful Labor Force Entry & Employment Retention
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.
Study of the Impact of Monitoring the Health Outcomes for Disabled Medicare Beneficiaries
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.
Substance Abuse & Mental Health Data Archive
Supportive Health Service Needs of Children with Disabilities
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.
Surgeon General's First-ever Report on Nation's Bone Health
The Future of Disability Statistics: What We Know & Need to Know
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.
The Medicaid Buy-In Program: Lessons Learned From Nine "Early Implementer" States
Examines the early implementation experiences of states that have opted for a Medicaid buy-in for people with disabilities.
The Science of Mental Illness--A Training Module for Science Teachers
The lessons in this module present fundamental information about mental illnesses. The Science of Mental Illness has several objectives, including introducing students in grades 6-8 to the key concept that mental illnesses have a biological basis and are therefore not that different from other illnesses or diseases. 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. Document is in Word format.
Trends in Health Insurance Costs
U.S. - Japan Collaborative Effort: Study of Long-Term Care Data Comparability
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.
U.S. Census Bureau Press Release: More Than 50 Million Americans Report Some Level of Disability
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.
Understanding Medicaid Home & Community Services: A Primer
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.
United Nations Statistics Division