The American Association of Retired Persons is a nonprofit membership organization dedicated to addressing the needs and interests of persons 50 and older. AARP's Research Center provides information on Independent Living topics such as housing, transportation, technology, and family relations..

AgeSource Worldwide identifies several hundred information resources in some 25 countries which are significant either in size or in their unique coverage of particular aging related issues. The resources include among others clearinghouses libraries, databases, training materials, major reports and Web metasites.

AgeStats Worldwide provides access to statistical data that compare the situation of older adults across countries or regions around a variety of issues such as demography, pensions, health and long-term care. The most recent data and projections as far ahead as 2060 are provided, where available.

You may search either or both databases at one time. Access is free of charge.

AgeSource and AgeStats Worldwide have been created by AARP to facilitate the international exchange of policy and program, relevant information in aging.

The American Geriatrics Society (AGS) Foundation for Health in Aging (FHA) is a national non-profit organization established in 1999 by The American Geriatrics Society. The foundation aims to build a bridge between the research and practice of Geriatrics and the Public, and to advocate on behalf of older adults and their special health care needs. The website has information on common health problems such as diabetes, falls, etc. and educational materials on geriatrics.

The APHA website represents the association of public health professionals in the US and provides specific information of use to this community including latest health policy research as well as public health announcements. It also provides links to individual state public health websites as well as international websites that addresses the issue.

The Arc is a national organization of and for people with mental retardation and related developmental disabilities and their families. This website has details of current Arc campaigns and publications on major policy initiatives for people with disabilities. The site includes an online report on the progress towards compliance with the ADA and the Olmstead ruling (2000) (http://www.thearc.org/olmstead_report.htm).

This organization advocates for people with mental disabilities and provides legal analysis and explanation of key cases and current legal issues brought under disability-related and mental health law, including Olmstead. The site provides reports about the Olmstead case, including a background to the case, key legal concepts it interpreted and links to other websites.

This website helps older adults find out what programs are available to them.

This website provides the latest news, research and policy analysis on California's health care system and its delivery and financing. Of particular interest for research into home and community based services and long term care in California is the Medi-Cal page of the website, http://www.chcf.org/topics/medi-cal/index.cfm, which is a gateway to relevant information about the various Medi-Cal programs that are available in California.

The California HealthCare Foundation and the University of California San Francisco have a free website on long term care services in California that is designed for consumers, caregivers, providers, discharge planners, and advocates. This site provides comprehensive information about the quality of long term care in the state including

The Carework Network is an international organization of researchers, policymakers, and advocates involved in various domains of care work. Carework research and policy focus on the caring work of individuals, families, communities, paid caregivers, social service agencies, and state bureaucracies, and ask important questions about such matters as:

• how women's labor force participation has affected the nature & scope of women's and men's caring work;
• how identities influence carework;
• how inequality based on gender, race/ethnicity, sexual orientation, and other factors relates to caring;
• how caring work is recognized and compensated;
• how various state welfare policies the distribution of carework;
• and whether and to what extent citizens have a right to receive, and a duty to provide, care.

This is the website of the national Cash & Counseling program. The program sponsors are The Robert Wood Johnson Foundation (RWJF), the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services (ASPE/DHHS), and the Administration on Aging (AoA). The website given describes the cash and counseling approach and details of how states can apply for grants to try out the cash and counseling model as well as transcripts of teleconferences with states who are involved.

This Center was established early in 2004 and is the national program office for the (expanded) cash and counseling program. The center will provide support for states involved in the program as well as providing comprehensive information and resources about consumer-directed care. The Home and Community-Based Services website is also included within the responsibilities of this Center.

Several links within this site related to Home and Community-Based PAS:

http://www.cms.hhs.gov/medicaid/consumerag.asp This site provides information on the Medicaid program, federal grants, initiatives and programs for disabled and aging populations. State-by-state data on federal programs, grants and promising practices (such as HCBS waiver programs) are available from this site.

This site links to: http://www.cms.hhs.gov/newfreedom/ Information on the federal New Freedom Initiative (NFI) which aims to develop community integration of people with disabilities. Includes reports on programs and grants to; develop state long-term care services, improve the direct service community workforce and promote the employment of people with disabilities.

http://www.cms.hhs.gov/medicaid/msis/mstats.asp Website of CMS that has Medicaid Program Statistics (MSIS) data dating from 1990. Participant and Expenditure data on most Medicaid programs are retrievable by state and US.

http://www.cms.hhs.gov/manuals/45_smm/ sm_02_2_2700.6_to_2700.6.asp#_toc490132956 This page of the CMS website deals specifically with the federal regulations for federal state Medicaid 1915(c) HCBS waivers. It provides guidelines of why waivers must be administered in certain way and also sets the guidelines of how the expenditure amount and number of participants may be calculated.

The Community Living Exchange Collaborative Clearinghouse collects and shares information about home and community-based services (HCBS) for people with disabilities of all ages from different states.

The site may also be of use to individuals with disabilities, older adults and providers to educate themselves on how to be active participants in changing systems. Researchers, policy makers and other interested parties will also find a wealth of information on the site about home and community based services.

The Disability Statistics Center produces and disseminates policy-relevant statistical information on the demographics and status of people with disabilities in American society. The Center's work focuses on how that status is changing over time with regard to employment, access to technology, health care, community-based services, and other aspects of independent living and participation in society.

Disability.gov, is a redesigned federal Web site that connects more than 50 million Americans with disabilities to thousands of trusted resources on disability-related issues, programs and services. Formerly known as DisabilityInfo.gov, the site has been completely redesigned and updated with new social media tools, such as a blog and a Twitter feed, to encourage feedback and interaction among visitors. Disability.gov is not just for Americans with disabilities, but also for parents of children with disabilities, employers, workforce and human resource professionals, veterans, educators, caregivers and many others.

EUROFAMCARE is an international research project funded within the 5th Framework Programme of the European Community, Key Action 6: The Ageing Population and Disabilities, 6.5: Health and Social Care Services to older People, Contract No QLK6-CT-2002-02647 "EUROFAMCARE". The EUROFAMCARE project will provide a European review of the situation of family carers of elderly people in relation to the existence, familiarity, availability, use and acceptability of supporting services.

This multilingual website of the Family Caregiver Alliance, a national community-based non profit organization provides information on a range of policy analysis and research publications on issues relating to informal caregivers. It also provides useful information, guides and factsheets for caregivers.

This is the website of a campaign against the institutionalization of people with disabilities by people with disabilities.

This link provides a collection of research reports, fact sheets, speeches, news releases, congressional testimony, legal dockets and opinions on the topic of "Funding for Long-Term Care Programs".

The Center for Health Services Research and Policy has published briefings on the implications of the Olmstead case, with a focus on the legal meaning of the decision and subsequent interpretations of the ruling. This site also provides research reports published from a project analyzing the Olmstead case and subsequent litigation.

These reports highlight promising pracices in home and community-based services offered by states to enable persons of any age who have a long-term illness or disability to live in the most integrated community setting appropriate to their individual support requirements and preferences.

Online, periodically updated report on litigation relating to Medicaid HCBS waiver programs.

A range of information is available from this site regarding Medicaid and long-term care waivers, programs and practices, in the form of briefings, reports and analyses. State by state data on Medicaid waivers, home and community based services and general Medicaid information are also listed by service at http://www.kff.org/medicaid/benefits/

Statistics on the number of nursing home residents, residents by primary payer source, nursing homes, nursing homes by ownership type, and nursing home beds nationwide have been updated by the University of California at San Francisco. These and other data are available on the Kaiser Family Foundation's State Health Facts.org website. This link leads directly to nursing home data. The general link above leads to further state data.

Medicare has a new website for caregivers connecting them to Medicare resources. The website provides information on navigating Medicare, assistance with billing, and exploring care options and other sources of help.

The NAHC is a trade association that represents the home care agencies, hospices, home care aide organizations and medical equipment suppliers. The site provides up to date information about the work that the association does in advocating for home and community based care as well as recent government policies that affect home and community based health care.

Reports and analyses of key disability policy areas including reports on state activity on Olmstead issues. Lists of key resources on issues such as community integration and Medicaid from other organizations are provided. Data on litigation and complaints relating to Olmstead is also provided.

The Aging Activities Group of the NCHS performs research and analysis and disseminates data on the health and health care utilization of aging Americans.

The above link is to a page with a collection of data tables providing information on trends of health and health care use by older Americans and a family of surveys designed to measure changes in health status, health-related behaviors, health care utilization, and the causes and consequences of these changes within and across two cohorts of elderly Americans.

Links to publications and policy reports concerning HCBS and the Olmstead case. Includes annual reports on Olmstead planning activity by state and links to other projects. Olmstead was brought under the Americans with Disabilities Act (ADA) Title II and is most relevant for Formal and Informal PAS and Home and Community-Based PAS.

Policy briefs and reports to Government on disability-related issues. Information leaflets for people with disabilities (for example on social security benefits, legal rights and housing) and a monthly newsletter are also available.

For people who have family members as caregivers, this website gives tips and advice for families and caregivers.

Policy reports, networking and information aimed at State Governors covering 5 broad topic areas, which include healthcare. Center for Best Practices also disseminates information on initiatives in different states across the 5 topics. Briefings on Medicaid and disability-related issues such as Olmstead and Ticket to Work are available.

This national public interest law firm focuses on healthcare issues and publishes guides on key areas of law, such as Medicaid. It also provides a 'Court Watch' service giving news about key lawsuits, including some cases related to Olmstead and a 'Waiver Watch' page which gives news on developments in state's waiver programs.

The National Health Policy Forum is a participant-driven, nonpartisan information exchange program that works to foster more informed government decision-making.

This Center advocates nationally through litigation and legislative representation, and assists attorneys to promote the independence of older people and people with disabilities. The website has legal news and details of cases relating to Medicaid, waiver programs and nursing facilities.

Quality Mall is a place where you can find lots of free information about person-centered supports for people with developmental disabilities. Each of the Mall stores has departments you can look through to learn about positive practices that help people with developmental disabilities live, work and participate in our communities and improve the quality of their supports.

This NIDRR-funded program at the University of Minnesota engages in research, evaluation and technical assistance to programs that support people with developmental disabilities to live in the community. The website provides information including case studies, research reports and links to further information on 6 topics covering; residential supports/Medicaid, disability statistics, self-advocacy, person centered practices, direct support professionals and leisure.

The Rosalynn Carter Institute establishes local, state and national partnerships committed to building quality long-term, home and community- based services. We believe strongly in the need to provide greater recognition and support for America's professional and family caregivers. Our focus includes supporting individuals and caregivers coping with chronic illness and disability across the lifespan as well as limitations due to aging.

Rutgers Center for State Health Policy is an initiative of the Institute for Health, Health Care Policy and Aging Research (IHHCPAR) to create a formal capacity within Rutgers, the State University of New Jersey, for policy analysis, research, training, facilitation, and consultation on state health policy. The Center combines Rutgers University's traditional academic strengths in public health, health services research, and social science with applied research and policy analysis initiatives. It serves as the focal point within the University for research and related activities relevant to state health policy.

Steve Gold is an experienced disability rights attorney based in Pennsylvania. He maintains this website which is a very useful resource for anyone interested in disability rights in the U.S. The website provides regular bulletins on policy developments, legislation, research and statistics concerning five key issues for people with disabilities: housing, medical assistance/Medicaid, nursing homes, education, and the Americans with Disabilities Act.

The website presents short, easy to read bulletins and also give tips on how to use the facts and figures in state and local lobbying. It also presents sources of further information. It is possible to sign-up online to receive new bulletins by email and there is a searchable archive of all previous bulletins.

This website of the Texas STAR PLUS program which is an innovative waiver combining Medicaid 1915(b) and 1915(c) waiver to serve dual eligible (Medicare and Medicaid ) recipients in Harris County in Texas. This program is one of the largest in the country, serving almost 63,000 recipients by 2004.

Part of a national healthcare and human services consulting firm, this website aims to be a central point for research and consulting services related to long term care carried out by the Lewin Group. The site includes a HCBS Population Tool that calculates estimates of the potential demand for HCBS based on data inputted by the user. The report also includes evaluation reports on state long-term care planning activities.

This policy organization analyses key social and economic policy. Some of the reports and data it produces are available online or can be purchased online.

Information and web-links to all Federal healthcare programs relating to the Olmstead decision and community integration, including new announcements made by the Government.

This website centralizes many policy research briefs and reports that have been published around the nation. It also provides custom data retrieval from the California Health Interview Survey conducted by the Center biannually.

The Home Care Quality Authority is a small agency of Washington State government. The agency operates the Home Care Referral Registry, a web-based tool that is used to match needs of Washington State residents who receive publicly funded long term in-home care with pre-screened and pre-qualified in-home care workers.