National Conference of State Legislatures
http://www.ncsl.org/progr ams/health/olmstead-home. htm
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.
Social Security Administration
http://www.socialsecurity .gov/policy/docs/quickfac ts/stat_snapshot/
Fact sheets provide monthly, individual state statistics that includes total expenditures and number of recipients receiving Disability Income and Supplemental Security Income benefits.
Center for Workers with Disabilities
http://cwd.aphsa.org/Home /home_news.asp
The Center, an affiliate of the National Association of State Medicaid Directors (NASMD), is a technical assistance center that is dedicated to helping states enhance employment support programs. One of the Center’s six task forces addresses current rules and regulations for workplace PAS, factors in the work place, and related concerns. Minutes of task force meetings, beginning in January 2003, as well as a small list of publications on workplace PAS are available.
Institute for Community Inclusion (ICI)
http://www.communityinclu sion.org/index.html
ICI offers training, clinical, and employment services, conducts research, and provides assistance to organizations to promote inclusion of people with disabilities in school, work, and community activities. Publication topics listed on the site include: employment, disability policy, finding and keeping a job, health care, social security benefits and eduction.
Of interest to those seeking employment are "Flexible funding stories" which describe funding approaches used by people with disabilities in order to obtain employment, often involving the hiring of personal assistants or job coaches in the workplace.
National Consortium for Health Systems Development
http://www.nchsd.org/topi cs/index.asp
The NCHSD is a technical assistance partnership providing flexible, state-tailored technical assistance to states developing comprehensive health and employment service systems for people with disabilities who want to work.
National Collaborative on Workforce and Disability/Youth (NCWD)
http://www.ncwd-youth.inf o/index.html
NCWD is a source of information about employment and youth with disabilities. Summaries of publications on disability and employment can be sorted according to 5 classes of users: Administrators, Employer/Business, Youth Service Practitioners, Policymakers, and Youth or Family. Outlines of disability-related legislation highlight eligibility requirements and services they provide.
Social Security Administration: Work Incentives
http://www.socialsecurity .gov/disabilityresearch/w i/generalinfo.htm
A description of programs and policies that help SSI and SSDI recipients increase their earnings without losing their benefits. Two such programs are the Program for Achieving Self-Sufficiency (PASS), and the Impairment-Related Work Expenses (IRWE).
Worksupport.com
http://www.worksupport.co m
Virginia Commonwealth University. Publishes reports and manuals on obtaining or managing workplace personal assistance services. Among them, Personal Assistance in the Workplace: A Customer-Directed Guide, 2003, (http://www.worksupport.com/Main/pass.asp) and Employer View of Workplace Supports (http://www.worksupport.com/Main/rrtcpapers.asp)
U.S. Department of Health and Human Services (DHHS), Office of Civil Rights
http://www.os.dhhs.gov/oc r/mis.htm
Information and web-links to all Federal healthcare programs relating to the Olmstead decision and community integration, including new announcements made by the Government.
National Directory of Aging Resources
http://www.n4a.org/direct oryorderform.cfm
The National Association of Area Agencies on Aging (n4a) publishes the National Directory of Aging Resources which provides the most complete listing available of local and state agencies on aging, as well as Native American aging programs.
National Governor’s Association
http://www.nga.org
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.
National Council on Disability
http://www.ncd.gov
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.
National Association for Protection and Advocacy Services, Disability Issue Areas
http://www.napas.org/issu es/default.htm
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.
Human Services Research Institute
http://www.hsri.org/index .asp?id=news
Online, periodically updated report on litigation relating to Medicaid HCBS waiver programs.
Kaiser Commission on Medicaid and the Uninsured
http://www.kff.org/about/ kcmu.cfm
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/
George Washington University, Department of Health Policy
http://www.gwumc.edu/sphh s/healthpolicy/
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.
Bazelon Center for Mental Health Law
http://www.bazelon.org/
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.
Research and Training Center on Community Living
http://www.rtc.umn.edu/ma in/
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 Lewin Group Center for Long-Term Care
http://www.lewin.com/Show case/LongTermCare/index.h tml
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.
The Urban Institute
http://www.urban.org/
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.
Family Caregiver Alliance
http://www.caregiver.org/ caregiver/jsp/home.jsp
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.
Freedom Clearinghouse
http://www.freedomclearin ghouse.org/
This is the website of a campaign against the institutionalization of people with disabilities by people with disabilities.
Arc of the USA
http://www.thearc.org
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).
Steve Gold’s Treasured Nuggets of Information
http://www.stevegoldada.c om
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.
National Senior Citizen’s Law Center
http://www.nsclc.org/
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.
National Health Law Program
http://www.healthlaw.org/
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.
National Association for Home Care and Hospice (NAHC)
http://www.nahc.org
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.
UCLA Center for Health Policy Research
http://www.healthpolicy.u cla.edu/
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.
American Public Health Association
http://www.apha.org/
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.
Center for the Study of Home and Community Life, Boston College Graduate School of Social Work
http://www.bc.edu/schools /gssw/research/researchce nter/
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.
Cash and Counseling
http://www.cashandcounsel ing.org/index.html
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.
Centers for Medicare and Medicaid Services (CMS)
http://www.cms.hhs.gov
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/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.
National Center for Health Statistics (NCHS) - Aging Activities Group
http://www.cdc.gov/aging/
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.
AGS Foundation for Health in Aging (FHA)
http://www.healthinaging. org
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.
Career One Stop
http://www.careeronestop. org/
From the Department of Labor, Career One Stop is a collection of tools that can help you find a job, learn more about careers, and find employment services in your area.
Council of State Administrators of Vocational Rehabilitation
http://www.rehabnetwork.o rg/directors_contact.htm
Vocational Rehabilitation is a program available in each state specifically to help people with disabilities work. The services can range from job training to counseling and transportation services. This website from the Council of State Administrators of Vocational Rehabilitation provides a contact list of each state’s program.
EARN
http://www.earnworks.com
The Employer Assistance & Recruiting Network (EARN) is a free service that connects employers looking for quality employees with skilled job candidates. This web site is a source of disability employment information including:
• recruiting services
• tools and resources
• employer success stories
• business case for hiring people with disabilities
National Center on Workforce and Disability/Adult (NCWD)
http://www.onestops.info/ subcategory.php?subcat_id =4
The National Center on Workforce and Disability/Adult provides training, technical assistance, policy analysis, and information to improve access for all in the workforce system. This section includes resources for people with disabilities who are seeking jobs.
Proyecto Visión
http://www.proyectovision .net/
Proyecto Visión connects disabled Latinos with employment services and related resources by offering a bilingual website, newsletter and technical assistance hotline plus outreach to employers in the community.
Center for PAS - State resources for employment of people with disabilities
http://www.pascenter.org/ state_based_stats/resourc es_home.php?title=State%2 0Resources%20for%20Employ ment%20of%20Persons%20wit h%20Disabilities
To find US and state resources for employment of people with disabilities, the Center has a directory of government agencies you can locate by state.
National Association of State Units on Aging (NASUA)
http://www.nasua.org/
NASUA is a non-profit association representing the nation's 56 officially designated state and territorial agencies on aging. The mission of the Association is to advance social, health, and economic policies responsive to the needs of a diverse aging population and to enhance the capacity of its membership to promote the rights, dignity and independence of, and expand opportunities and resources for, current and future generations of older persons, adults with disabilities and their families.
This website contains links to departments in each state that deal with services for seniors and people with disabilities. It also provides reports on home and community based services and Medicaid waivers.
National Family Caregivers Association (NFCA)
http://www.thefamilycareg iver.org/index.cfm
For people who have family members as caregivers, this website gives tips and advice for families and caregivers.
Eldercare Locator: Connecting Seniors to Community Services
http://www.eldercare.gov/
The Eldercare Locator links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers. Whether an older person needs help with services such as meals, home care or transportation, or a caregiver needs training and education or a well-deserved break from caregiving responsibilities, the Eldercare Locator is there to point that person in the right direction.
Topics include, General Information & Assistance, Aging & Disability Resource Center, Medicare, Elder Abuse Prevention, Health Insurance Counseling, Legal Assistance, Long-term Care Ombudsman and Prescription Assistance.
AARP Research Center: Independent Living
http://www.aarp.org/resea rch/
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.
American Association of Homes and Services for the Aging (AAHSA)
http://www2.aahsa.org/con sumer_info/default.asp
This section helps consumers learn about the different types of living arrangements that are available, how to deal with the emotional stresses of caregiving, how to plan for long-term care costs, and how to get involved in aging services.
U.S. Department of Justice, Americans with Disabilities Act
http://www.ada.gov
This website provides information on the Americans with Disabilities Act that describe the rights of people with disabilities, employers and other public groups and buildings. This website lists Federal agencies with ADA responsibilities.
Disability Benefits 101
http://www.disabilitybene fits101.org/
Disability Benefits 101 (DB101) helps workers, job seekers, and service providers understand the connections between work and benefits. Although focused on California, it features a section on workplace PAS as well as practical information for employers or consumers, including frequently asked questions, policy updates publications list, and more.
Centers for Medicare and Medicaid Services
http://www.cms.hhs.gov/tw wiia/
The "Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA)", modernizes the employment services system for people with disabilities and makes it possible for millions of Americans with disabilities to no longer have to choose between taking a job and having health care.
This site looks at the four sections of the Act that provide health care support for people with disabilities who work. The sections are:
• Medicaid Buy-In
• Extended Medicare Coverage
• Medicaid Infrastructure Grants
• Demonstration to Maintain Independence and employment
U.S. Department of Labor/Office of Disability Employment Policy (ODEP)
http://www.dol.gov/odep/p ubs/ek97/personal.htm
The following page provides the DOL definition of workplace personal assistance, examples of it, and links to additional resources.
Community Living Exchange Collaborative Clearinghouse
http://www.hcbs.org/
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.
American Association on Health and Disability
http://www.aahd.us/
One of the missions of the American Association on Health and Disability is to promote health and wellness of people with disabilities. The website has information, resources, and a newsletter for consumers on prevention and wellness.
American Red Cross
http://www.redcross.org/s ervices/disaster/0,1082,0 _500_,00.html
This website from the Red Cross gives suggestions on how to prepare for emergencies and natural disasters for people who have physical, visual, auditory, or cognitive disabilities.
Disabled People and Disaster Planning
http://www.citycent.com/d p2/index.html
This website gives people with disabilities, shelter managers and rescue workers information about how to prepare for a disaster such as an earthquake (grade level 12).
Disabled Sports USA
http://www.dsusa.org
Disabled Sports USA is an organization that offers nationwide sports rehabilitation programs to anyone with a permanent physical disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events. Participants include those with visual impairments, amputations, spinal cord injury, dwarfism, multiple sclerosis, head injury, cerebral palsy, and other neuromuscular and orthopedic conditions.
Federal Emergency Management Administration: Disaster Preparedness for People with Disabilities
http://www.fema.gov/plan/ prepare/specialplans.shtm
The Federal Emergency Management Administration (FEMA) offers these suggestions to keep in mind when making emergency preparations addressing people with disabilities.
Disaster Resources for People with Disabilities
http://www.jik.com/disast er.html
Emergency Preparedness for with disabilities, their families and support networks. Covers specific individual preparedness for people with disabilities and activity limitations and content includes:
- Guides
- Hazard Specific
- Lessons Documented
- Specific Functional Need Focus
- Forms, Checklists, Tools, Samples, etc.
- Videos
- General Preparedness Information
North Carolina Office on Disability and Health: Publications
http://www.fpg.unc.edu/~n codh/
The North Carolina Office on Disability and Health lists several publications available from their website on access to health care for people with disabilities. Women’s health, removing barriers, physical activity, health and wellness are some of the subjects covered in the publications.
Ready.Gov: Department of Homeland Security
http://www.ready.gov/amer ica/getakit/disabled.html
Ready.gov is the Department of Homeland Security’s public website on emergency preparedness. The section on making an emergency kit includes checklists for special needs items for infants, the elderly, and people with disabilities.
Through the Looking Glass
http://lookingglass.org/i ndex.php
Through the Looking Glass (TLG) is an organization that helps families in which a child, parent or grandparent has a disability by providing information and services on how to help families adapt to various disabilities.
ABLEDATA
http://www.abledata.com/
ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. ABLEDATA does not sell any products, but can help you locate the companies that do.
Center for Assistive Technology & Environmental Access (CATEA) at Georgia Tech
http://www.catea.org/proj ects.php
CATEA supports individuals with disabilities of any age within the State of Georgia and beyond through: expert services, research, design and technological development, information dissemination, and educational programs. The application of these resources is intended to promote maximum access to opportunity and environments by enhancing individuals' capabilities through the appropriate use of technology.
Ability Hub
http://www.abilityhub.com /
This website offers solutions and ideas for people with many kinds of disabilities who find using a computer difficult, maybe even impossible. This website will direct you to adaptive equipment and alternative methods available for using computers.
Association on Higher Education and Disability
http://www.ahead.org
This website contains a lot of information for people with disabilities interested in going to school after high school. The web site offers many helpful links to different universities and programs, and to information on a range of specific disabilities.
DO-IT Center
http://www.washington.edu /doit/
A project of the University of Washington, DO-IT serves to increase the participation of individuals with disabilities in academic programs and careers. It promotes the use of assitive technology to increase independence, productivity, and participation in education and employment.
Equal Access to Software and Information (EASI)
http://www.easi.cc
EASI provides information and guidance to students and professionals with disabilities on adaptive software and technology used in schools, colleges, universities, libraries and the workplace.
National Center for Learning Disabilities
http://www.ncld.org
The National Center for Learning Disabilities provides online information about learning disabilities, early literacy and learning resources, support for adolescents and adults with learning disabilities, public policy and advocacy tools.
National Center on Physical Activity and Disability
http://www.ncpad.org/
The National Center on Physical Activity and Disability believes being physically active is good for everybody. This website has guidelines to consider before starting any kind of exercise program plus factsheets on many activities, games, and sports that have been adapted for people with disabilities.
National Center on Secondary Education and Transition (NCSET)
http://www.ncset.org
The National Center on Secondary Education and Transition was established to create opportunities for youths with disabilities to achieve successful futures. NCSET provides technical assistance and provides information related to schooling after high school and other transition issues for youth with disabilities.
National Clearinghouse on Postsecondary Education for Individuals with Disabilities
http://www.heath.gwu.edu/
The HEATH Resource Center provides information about educational support services, policies, procedures, adaptations, and opportunities for people with disabilities in the United States.
American Association of People with Disabilities (AAPD)
http://www.aapd-dc.org
AAPD is the largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities.
American Disabled for Attendant Programs Today (ADAPT)
http://www.adapt.org/
ADAPT is an organization at the forefront of activism regarding issues facing people with disabilities such as consumer direction of Personal Assistance Services in the community.
Association of Programs for Rural Independent Living (APRIL)
http://www.april-rural.or g/
The Association of Programs for Rural Independent Living (APRIL) is a national network of rural independent living centers and individuals concerned with the unique aspects of rural independent living.
Directory of Centers for Independent Living
http://www.virtualcil.net /cils/
Centers for Independent Living (CILs) are advocacy organizations run by and for people with disabilities. This website from the MetroWest Center for Independent Living has a directory of all CILs by state.
Disability Rights Education and Defense Fund (DREDF)
http://www.dredf.org
DREDF is a national law and policy center dedicated to protecting and advancing the civil rights and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.
Disability World
http://www.disabilityworl d.org/
Disability World is an online magazine dedicated to advancing an exchange of information and expertise about the international independent living movement of people with disabilities.
National Clearinghouse on the Direct Care Workforce
http://www.directcareclea ringhouse.org/i_jobs_o.js p
The National Clearinghouse on the Direct Care Workforce tracks national and state policies that relate to the PAS workforce. Information for consumers of Personal Assistance Services can be found on their Consumer Direction section of the Direct Care Clearinghouse web site.
National Organization on Disability
http://www.nod.org
The National Organization on Disability (NOD) provides the latest in disability news, information, and resources. NOD has a number of programs running dealing with issues such as employment, emergency preparedness and disability in the community.
National Program Office on Self-Determination
http://www.self-determina tion.com
National Program Office on Self-Determination provides links, articles, and message boards on self-determination, as well as articles on personal care assistants.
TASH
http://www.tash.org
TASH is a civil rights organization that works to include people with disabilities into every aspect of society.
Personal Assistance Services (PAS) in the Workplace - Job Accommodation Network
http://www.jan.wvu.edu/me dia/PAS.html
A report on Personal Assistance Services in the Workplace.
Carework Network
http://www.carework-netwo rk.org/
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.
Center for Home Care Policy & Research
http://www.vnsny.org/rese arch/
The Center for Home Care Policy and Research has become recognized as the pre-eminent research center for home care and is the only of its kind in the nation.
Direct Care Alliance
http://www.directcarealli ance.org
The DCA is a unique coalition of consumers, workers, and concerned providers dedicated to ensuring a stable, valued and well-trained workforce in long-term care.
Health Care for Health Care Workers
http://hchcw.org
An initiative from the Paraprofessional Healthcare Institute, Health Care for Heath Care Workers aims to bring public attention to the crisis facing tens of thousands of direct-care workers who assist millions of Americans with age-related and other disabilities but lack coverage themselves.
Iowa CareGivers Association
http://www.iowacaregivers .org/
Iowa CareGivers Association (ICA) is Iowa's first independent statewide professional association for Certified Nurse Assistants, Home Care Aides, Patient Care Technicians, and other direct care/support workers who deliver 80-90% of the care in Iowa's nursing facilities, home care agencies and in many other health care settings
ICA provides education, information, support and advocacy for those who perform direct resident/patient/client care. ICA also conducts market research relative to staff recruitment and retention.
Maine Personal Assistance Services Association (PASA)
http://www.mainepasa.org/
Maine PASA is an association that promotes professionalism and development for the direct care, direct support and personal assistance workforce to support the highest quality of life for elders and people with disabilities.
National Alliance for Caregiving
http://www.caregiving.org /
The National Alliance for Caregiving is dedicated to providing support and information to family caregivers and to increasing public awareness of issues facing family caregivers.
National Association of Area Agencies on Aging
http://www.n4a.org/defaul t.cfm
The National Association of Area Agencies on Aging (n4a) is the umbrella organization for the 655 area agencies on aging (AAAs) and more than 230 Title VI Native American aging programs in the U.S. Through its presence in Washington, D.C., n4a advocates on behalf of the local aging agencies to ensure that needed resources and support services are available to older Americans.
National Direct Service Workforce Resource Center
http://www.dswresourcecen ter.org/
The National Direct Service Workforce (DSW) Resource Center supports efforts to improve recruitment and retention of direct service workers who help people with disabilities and older adults to live independently and with dignity.
National Health Policy Forum
http://www.nhpf.org/index .htm
The National Health Policy Forum is a participant-driven, nonpartisan information exchange program that works to foster more informed government decision-making.
Rewarding Work
http://www.RewardingWork. org
RewardingWork.org is an online direct care job registry connecting employees and employers in Connecticut, Massachusetts and New Jersey.
Service Employees International Union, Home Care Workers
http://www.seiu.org/longt erm/home%5Fcare/
The Service Employees International Union is 1.8 million working
people and 50,000 retirees united to improve services and our
communities throughout North America. It is the largest health care
union, with 900,000 members in the field, including nurses, LPNs,
doctors, lab technicians, nursing home workers and home care workers.
National Resource Center on Supportive Housing and Home Modification
http://www.homemods.org
A project of the University of Southern California Andrus Gerontology Center, this resource center has an online directoy of home modifications resources, aimed at promoting independence and preventing accidents in the home.
It is also the home to another project titled "Caregiver Adaptations to Reduce Environmental Stress" aimed at increaing caregiver use of environmental coping strategies to reduce physical burden and strain.
Kaiser Family Foundation
http://www.statehealthfac ts.org/
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.
HCBS Promising Practices Reports.
http://www.cms.hhs.gov/Pr omisingPractices/HCBSPPR/ list.asp
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.
Benefits Check Up: National Council on the Aging
http://www.benefitschecku p.org/
This website helps older adults find out what programs are available to them.
Family Caregiving 101
http://www.familycaregivi ng101.org/
Provides assistance, answers, new ideas and helpful advice to family care givers.
National Academy for State Health Policy News
http://www.nashp.org/_cat disp_page.cfm?LID=D4AF7E2 0-E86B-4566-8413907669899 5E7
The National Academy for State Health Policy is an independent academy of state health policymakers working together to identify emerging issues, develop policy solutions, and improve state health policy and practice. NASHP provides a forum for constructive, nonpartisan work across branches and agencies of state government on critical health issues facing states.
The Annapolis Coalition on the Behavioral Health Workforce
http://www.annapoliscoali tion.org/pages/
The Annapolis Coalition is a not-for-profit organization dedicated to improving the recruitment, retention, training, and performance of the prevention and treatment workforce in the mental health and addictions sectors of the behavioral health field.
Rosalynn Carter Institute for Caregiving
http://www.rosalynncarter .org/home/
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.
Quality Mall
http://www.qualitymall.or g/main/
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.
University of Southern Maine Muskie School of Public Service, Institute for Health Policy
http://muskie.usm.maine.e du/research/ihp.jsp
Through a diverse range of research projects, public service activities, and partnerships, the Institute for Health Policy seeks to increase access to health care, enhance the quality of care, and eliminate disparities in the availability and delivery of services. Timely information and practical support for decision makers improve health care for the citizens of Maine and across the nation.
Rutgers Center for State Health Policy
http://www.cshp.rutgers.e du/
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.
Center for Aging Services Technologies
http://www.agingtech.org/ index.aspx
The Center for Aging Services Technologies (CAST) is leading the charge to expedite the development, evaluation and adoption of emerging technologies that can improve the aging experience. CAST has become an international coalition of more than 400 technology companies, aging services organizations, research universities, and government representatives.
Disability Statistics Center
http://dsc.ucsf.edu/main. php
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.
Medicare - Caregiver Information.
http://www.medicare.gov/c aregivers/
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.
Consortium for Citizens with Disabilities
http://www.c-c-d.org/
The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.
Accommodation and Compliance Series: The ADA Amendments Act of 2008
http://www.jan.wvu.edu/bu lletins/adaaa1.htm
On January 1, 2009, the Americans with Disabilities Act (ADA) Amendments Act of 2008 went into effect, making some major changes to the way the definition of disability has been interpreted in the past. The changes apply to both the ADA and the Rehabilitation Act. Very few people argue that these changes were not needed – the courts had interpreted the definition of disability so narrowly that hardly anyone could meet it – but the challenge now is understanding what the changes are and who is covered as of January 1st. We do not yet have any regulations nor do we have any court interpretation; all we currently have are the words of the Amendments Act and its legislative history. With that said, let’s take a look at what we know so far.
PHI PolicyWorks
http://phinational.org/po licy/
PHI PolicyWorks gives users access to, up-to-date statistics, timely research and analysis, and strategic legislative and regulatory recommendations. PolicyWorks features:
- Strategic Areas - Frameworks for understanding the leading policy issues affecting the direct-care workforce
- Workforce Facts - An introduction to the demographics, size, and economic impact of the direct-care workforce
- Policy Recommendations - Strategic recommendations on the critical issues affecting direct-care workers
- Chart Gallery - High quality graphics highlighting key data on the direct-care workforce
- Guide to Accessing Federal Recovery Act Funds - Help for those interested in taking advantage of the unprecedented level of public resources now available
- Health Reform Resource Center - Resources to help ensure that national health reform works for the direct-care workforce
Funding for Long-Term Care Programs
http://www.aarp.org/resea rch/longtermcare/programf unding/
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".
State Scorecard on Health System Performance
http://www.commonwealthfu nd.org/Charts-and-Maps/St ate-Scorecard
An interactive U.S. map which draws from the Commission on a High Performance Health System's report, Aiming Higher: Results from a State Scorecard on Health System Performance. The map can be used to view state-specific rankings and results compared to benchmarks, and to view the number of lives and dollars each state could save by achieving benchmark levels of performance.
Disability.gov
http://www.Disability.gov
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.
Emergency Preparedness Initiative - a program of the National Organization on Disability
http://www.nod.org/index. cfm?fuseaction=Page.viewP age&pageId=1564
Following the attacks of September 11, 2001, NOD launched the Emergency Preparedness Initiative (EPI) to ensure that emergency managers address disability concerns and that people with disabilities are included in all levels of emergency preparedness including planning, response, and recovery.
EPI has since become a nationally recognized leader in emergency preparedness for people with disabilities and special needs through the delivery of national outreach, education, and awareness programs. Additionally, EPI offers training programs to ensure that preparedness officials across the country include people with disabilities in their emergency planning, preparation, response and recovery activities at the community level. EPI works to ensure that people with disabilities take an active role in emergency plan development and practice before, during, and after emergencies.
Caring for a Person with Alzheimer's Disease
http://www.nia.nih.gov/NR /rdonlyres/6A0E9F3C-E429- 4F03-818E-D1B60235D5F8/0/ 100711_LoRes2.pdf
This guide is for people who care for family members or others with Alzheimer's disease (AD) at home. Includes information about how AD changes a person; coping with these changes; helping family and friends understand AD; making your home safe for the person with AD; and managing everyday activities like eating, bathing, dressing and grooming.
