AARP (American Association of Retired Persons)
The AARPs site covers the organizations advocacy positions on a variety of elder topics including Social Security and Medicare. Helpful features include: information on comparing Medigap insurance policies (detailed, but out-of-date), and information on Medicare and the AARP Advocacy Center for Medicare. The AARP offers its own Web letter service: free bi-weekly e-mail subscriptions. To promote advocacy on national issues there is a directory, with direct e-mail links, to every member of Congress. The site is searchable.
The American College of Trust and Estate Counsel is a professional association consisting of approximately 2,700 lawyers from throughout the United States. Members are invited to join based upon their professional reputation and ability in the fields of trusts and estates. ACTEC’s Web site includes many items on its “What’s New” page.
ARC of the United States
The national organization of and for people with mental retardation and related disabilities and their families.
Americans with Disabilities Act
This U.S. Department of Justice site includes information and numerous links relating to the Americans with Disabilities Act and enforcement. The Departments technical assistance manuals are available on-line along with information on new and pending regulations.
Exceptional Parent Magazine
A magazine for parents of children with special needs.
Families USA Foundation is a national nonprofit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. Its site includes companion sites on Medicaid and managed care with extensive materials from a wide range of similar organizations, and both national and state-specific information. Families USA offers free subscriptions to e-mail newsletters and policy alerts in four areas – Medicaid, managed care, childrens health, and all health care issues. The site is searchable. This is a valuable site for those involved in advocacy at the legislative and regulatory arenas and for those with legal problems with managed care or Medicaid.
This Government Printing Office site offers an on-line, searchable and current version of all federal regulations along with access to the Federal Register, 1995 to date. This is one of many “gateway” sites that provide access to the Government Printing Office publications.
The Hospice Patients Alliance
The Hospice Patients Alliance (HPA) is a private nonprofit charitable corporation dedicated to serving the general public, hospice patients, their families/caregivers, the bereaved and hospice staff. HPA promotes quality hospice services whether a patient is enrolled in a licensed hospice or not, whether residing at home or in a facility.
Internal Revenue Service (IRS)
The IRS site is extremely large and includes a link to IRS forms and publications that can be downloaded and printed using Adobe Acrobat. Quite often the on-line forms are more up-to-date than the printed forms available
The Last Acts website is an on-line community dedicated to improving end-of-life care through the sharing of ideas and solutions by professional care givers, educators and consumers. The site includes a resource center, updates on the campaign Task Force groups, news updates, reports on palliative care, family needs, service providers, education and training.
This Health Care Financing Administration (HCFA) site is dedicated to Medicare. Features include directories of contacts for each state and downloadable publications on Medicare, nursing home selection and advance directives. The national nursing home database contains detailed survey and certification data noting deficiencies and corrective action ordered by state agencies. This data can be helpful in advising clients on nursing home selection. There is similar comparative information on all Medicare managed care organizations.
Medicare Rights Center
The Medicare Rights Center, a national, not-for-profit organization located in New York City, is exclusively devoted to ensuring that seniors and people with disabilities on Medicare have access to quality, affordable health care. The site offers direct assistance for Medicare beneficiaries and on-line versions of 1997 brochures. More current brochures may be purchased.
National Association of Private Schools for Exceptional Children.
National Down Syndrome Society
National Health Law Project (NHeLP)
NHeLP is a national organization providing health care advocacy for low-income people. It provides litigation support, training and consulting services and detailed analysis of current and proposed legislation. Its links page (www.healthlaw.org/links.html#states ) is quite thorough, with connections to Medicaid agencies in most states and a wide variety of advocacy groups. NHeLP offers a free e-mail subscriptions for publishing information on current issues.
National Family Caregivers Association
The National Family Caregivers Association offers services in the areas of information and education, support and validation, and public awareness and advocacy, toward the goal of minimizing the disparity between a caregiver’s quality of life and that of mainstream Americans.
National Partnership For Women & Families (NPWF)
National Partnership hosts a special section on caregiving which has information on important federal laws that can help caregivers; helpful articles on a range of caregiving issues, from how to prepare for the possibility of caregiving to what to do when the job suddenly falls on your shoulders; links to research on caregiving; and a resource section that highlights other web sites. This helpful information can be found under their main Work and Family area.
The New Jersey Center for Outreach and Services for the Autism Community, Inc.
A private, nonprofit corporation funded by the State of New Jersey whose purpose is to assist families, individuals, and agencies concerned with the welfare and education of children and adults with autism and pervasive development disorders.
State of New Jersey Services Index
The Sharing Network
This is a site which will give you valuable information regarding organ and tissue donation services.
Social Security Administration
This is the official site of the Social Security Administration. In addition to providing basic information, it contains many publications dealing with Social Security in English and Spanish, the entire Social Security Act (including Medicare and Medicaid), recent legislation, the Social Security Handbook, links to federal regulations, and information on legal employment with the Administration. Users can learn about applying for Social Security, how benefits are calculated, and how to estimate benefit levels, and can request a Personal Earnings and Benefit Statement.