HEALTH/LONG-TERM SERVICES
This page has information and resources to help you live independently in your own home and community.
News
Stand Up for Health Care Project, From Families USA, July 29, 2008
Sense of crisis prevails in US healthcare, By Nicholas Timmins, The Financial Times, June 30, 2008
Drug Industry Spent Record Amount Lobbying in '07, From the Center for Public Integrity, June 24, 2008
Happy Ninth Anniversary - Olmstead, Information Bulletin #261 from Steve Gold, June 20, 2008
States lack protections for consumers of individual health plans, group says, By Julius A. Karash, The Kansas City Star, June, 12, 2008
More are struggling with medical expenses despite having health insurance, By Julius Karash, The Kansas City Star, June 10, 2008
Research Finds Wide Disparities in Health Care by Race and Region, By Kevin Sack, The New York Times, June 05, 2008
Failing Economy Predicts Worse Health, By Kathleen Kingsbury for Time Magazine, May 05, 2008
Disability Rights Advocates Challenge McCain and Republicans on Lack of Support for Community Choice Act: McCain's Office Responds by Arresting Over 40, From ADAPT, May 01, 2008
Advocacy Organizations and Informational Resources
The Centers for Medicare & Medicaid Services (CMS), formerly known as the Health Care Financing Administration (HCFA), is the federal agency responsible for administering the Medicare, Medicaid, SCHIP (State Children's Health Insurance), HIPAA (Health Insurance Portability and Accountability Act), CLIA (Clinical Laboratory Improvement Amendments), and several other health-related programs.
The Center for Personal Assistance Services provides research, training, dissemination and technical assistance on issues of personal assistance services (PAS) in the United States.
This section of DisabilityInfo.gov offers a wide range of information and resources to help people with disabilities live independently and participate fully in all aspects of community life.
Disaboom.com was founded by Dr. J. Glen House, a physician specializing in physical medicine and rehabilitation who is also a quadriplegic. His firsthand knowledge of the challenges faced by individuals with disabilities and those whose lives they touch has driven the Disaboom.com mission: to create the first comprehensive, evolving source of information, insight, and personal engagement for the disability community.
Families USA is a grassroots website for consumers about all kinds of health care coverage. They have several reports on various Medicaid programs and ideas on how to advocate for each state.
Independent Living Research Utilization (ILRU) provides research, education and consultation in the areas of independent living, the Americans with Disabilities Act, home and community based services and health issues for people with disabilities.
The Kaiser Family Foundation is non-profit, private operating foundation dedicated to providing information and analysis on health care issues to policymakers, the media, the health care community and the general public. The Foundation is not associated with Kaiser Permanente or Kaiser Industries.
Steve Gold's Nuggets is a website and listserve maintained by renowned disability rights attorney Steve Gold. It contains timely, useful information on topics of importance to people with disabilities, such as, housing, Medicaid, nursing homes and education.
Through the Looking Glass (TLG) is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue.
Working Together: Personal Assistance Training and You provides training modules, online tools, links and additional informational resources to help you to hire, train and work with your personal assistant.
Publications
Going Home - Is a booklet about home and community based options to institutional care. It expalians how TILRC can help you get the healthcare services and supports you need in your own home and community.
Genworth Financial Long-Term Care National Survey: Key findings from a national survey of 800 likely voters, conducted August 14-16, 2007. The survey found that nearly seven in ten Americans have not made any plans for their own, a spouse's or another relative's long term care needs. Yet, over half those surveyed have had a loved one who needed some form of long term care. The poll also found that close to 80 percent of the respondents want to see long term care included in the healthcare proposals offered by the presidential candidates. More than 80 percent of those surveyed also said that positions on long term care funding will be an important factor in deciding who to vote for in the 2008 election.
ILRU Publications - ILRU has developed a variety of publications on independent living subjects, including a technical report series; monographs outlining the implications of health care reform for independent living; ADA resource materials available in both English and Spanish; directories of independent living centers and of independent living support materials; and handbooks providing background information on the independent living movement and on establishing and operating an independent living center.
Estimating the Expense of a Mandatory Home and Community-Based Personal Assistance Services Benefit Under Medicaid; Mitchell P. LaPlante, PhD, H. Stephen Kaye, PhD, Charlene Harrington, PhD, University of California San Francisco
The Home and Community Based Services (HCBS) Physically Disabled Waiver (HCBS/PD) Policy and Procedure manual contains the official policies and procedures to be used when providing services under the HCBS waiver for persons with physical disabilities.
Diabetes and SCI is the first in a series of educational brochures by the Rehabilitation Research and Training Center on Spinal Cord Injury (RRTC on SCI)focused on specific health concerns and issues of long-term spinal cord injury survivors. This brochure is intended for spinal cord injury survivors living in the community to help maintain their health.