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Links
The following is a list of links to organizations, services and information
related to Home and Community-Based PAS.
Home and Community Based PAS Links
AgeSource Worldwide describes clearinghouses, databases, libraries, directories, statistical resources, bibliographies and reading lists, texts, and Web metasites focused on aging or closely allied subjects. The topics covered range from Alzheimer's disease to wills and estate planning. Almost 300 information resources in 26 countries with the majority based in the United States alone. Most of the information resources are located in North America and Europe.
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.
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 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 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 Nursing Home Search Web site is a free service for California seniors, caregivers, family members, providers, and consumers. This site provides comprehensive information about the quality of nursing and intermediate care facilities in the state. The site has information on Nursing Home Alternatives, How to Select a Nursing Home, Questions to ask when visiting potential choices, Resident and Family Rights, and Links.
This site does not address intermediate care facilities for the developmentally disabled, assisted living, residential care or residential lockdown facilities, senior living communities, or retirement homes.
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 gives 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.
Site aims to share project information and reports between states about service planning for people with disabilities. It signposts key reports and activities in other organizations relating to community integration. Policy analysis and links to up-to-date reports and policy implications are provided on the site.
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 (www.hcbs.org) is also included within the responsibilities of this Center.
Centers for Medicare and Medicaid Services (CMS)
http://www.cms.hhs.govSeveral 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/olmstead/ Information on the Federal response to Olmstead, state obligations under the ADA and advisory letters to states.
http://www.cms.hhs.gov/medicaid/msis/mstats.aspWebsite 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#_toc490132956This 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.
Clearing House for the Community Living Exchange Collaborative
http://www.hcbs.org/Site aims to share project information and reports between states about service planning for people with disabilities. It signposts key reports and activities in other organizations relating to community integration. Policy analysis and links to up-to-date reports and policy implications are provided on the site.
This consumer oriented site provides lists of publications from Families USA and other organizations as well as state-by-state data on Medicaid programs. It also provides briefings on key policies and ideas for action to challenge state activity.
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.
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.
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://207.22.102.105/medicaidbenefits/
Reports and training materials aimed at supporting State coalitions to develop community-based care for people with mental illness. Includes details of state contacts and programs to develop community based care.
National Association for Home Care and Hospice (NAHC)
http://www.nahc.orgThe 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.
National Association of State Units on Aging
http://www.nasua.org/This website is the representation of individual state departments that deals with issues for the ages and disabled. It provides links to state reports on home and community based services and Medicaid 1915(c) HCBS waivers. Current government policies regarding care for the aged and disabled are also presented in this website.
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 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, including a comprehensive analysis of the impact across the country of the Olmstead case (2003). Information leaflets for people with disabilities (for example on social security benefits, legal rights and housing) and a monthly newsletter are also available.
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.
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.
Federal Government’s informational site for people with disabilities about the New Freedom Initiative. Information is divided by categories such as health, civil rights, independent living and employment.
This website provides details about a joint project of the National Association of State Units on Aging and the National Council on Aging which aims to help increase opportunities for older people to control their own care. It provides a definition of consumer direction and a toolkit (being piloted in 5 states) for policymakers and service providers to use to evaluate their programs and services. Information on reports and journal articles on this subject are listed, and an online newsletter is accessible. There is also state-by-state information on those states participating in the initiative.
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.
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.
U.S. Department of Health and Human Services (DHHS), Office of Civil Rights
http://www.os.dhhs.gov/ocr/mis.htmInformation and web-links to all Federal healthcare programs relating to the Olmstead decision and community integration, including new announcements made by the Government.
U.S. Department of Justice, Americans with Disabilities Act (ADA)
http://www.usdoj.gov/crt/ada/Provides information on the ADA, the obligations of different groups under this legislation (including public bodies and employers) and cross-Governmental activity to ensure compliance with the ADA.
Also at: http://www.ada.gov
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.
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