Following are descriptions of websites and documents related to individuals with special health care needs. Special needs can encompass many different conditions, however I focused on two areas: cancer and disabilities, although much of this information is appropriate for individuals with other special needs as well.

In these days of feelings of mistrust towards managed care, individuals with special needs may feel that they are being denied access to the most up to date care for their condition. In addition, with the explosion of interest in alternative medicine, individuals with special needs may be interested in the appropriateness of such therapies. The following websites and documents provide credible resources for these individuals to learn about the appropriateness of various types of treatments including alternative medicine, as well as information on patients’ rights and appealing HMOs decisions.
 

Managed Care Systems Serving Persons with Disabilities *****

This is the Managed Care Systems Serving Persons with Disabilities web site. The site is sponsored by the Office of the Assistant Secretary for Planning and Evaluation within the Department of Health and Human Services. It provides information relevant to researchers, policymakers, consumers, and advocates on a wide range of issues associated with managed care and disabilities. The site is organized into five areas:

Research: Inventory of current research in the field of managed care and disabilities.

Programs: Information on public- and private-sector health insurance programs.

System Design: Overview of key aspects of managed care system design for individuals with disabilities.

Populations: Disability-specific overview of managed care issues.
Links: Links to other organizations, agencies, states, publications, and data.

This is an excellent and credible resource for individuals with disabilities.
 

The National Center for Complementary and Alternative Medicine (NCCAM) ****

NCCAM conducts and supports basic and applied research and training and disseminates information on complementary and alternative medicine to practitioners and the public. NIH cautions users not to seek the therapies described in the website without the consultation of a licensed health care provider.
 

Healthfinders ****

This website is sponsored by the Department of Health and Human Services. It contains reliable and unbiased information on a variety of health topics. Some of the information of interest to individuals with special needs include: finding reliable health information online; choosing quality care; as well as information on fraud and complaints. It also contains a search feature to locate information on a specific topic.
 

American Cancer Society (ACS) ****

This is the website for the American Cancer Society (ACS). ACS is a well-known and respected resource for individuals with cancer. The website provides general cancer facts as well as information on specific types of cancers. The site also includes a section on alternative and complementary treatments. This section is designed to help individuals assess the safety and efficacy of specific treatments. However, individuals are encouraged to discuss the treatments with their health care team.
 

Quackwatch, Inc ***

This is the website for Quackwatch, Inc., a member of Consumer Federation of America. It is a nonprofit corporation whose purpose is to combat health-related frauds, myths, fads, and fallacies. Their activities include:

The website contains information on a number of health related issues only a portion of which is of interest to individuals with special needs. It does discuss the merits of several alternative treatments for cancer patients. It also includes information on whether MCOs should cover alternative medicine.
 

Consumers' Role in Developing and Directing Medicaid Managed Care for People with Special Needs ****

  This document "Consumers' Role in Developing and Directing Medicaid Managed Care for People with Special Needs" is found on the website of the Center for Health Care Strategies, Inc. (CHCS). CHCS is a non-profit, non-partisan policy and resource center affiliated with the Woodrow Wilson School of Public and International Affairs at Princeton University. The Center serves as the National Program Office for two national initiatives of the Robert Wood Johnson Foundation: Medicaid Managed Care Program and Building Health Systems for People with Chronic Illnesses.The article encourages consumers with special needs to become more involved in managed care. This benefits both the consumer and the MCO. The consumer benefits because their needs are made known and hopefully better met. It is also in the MCO's interests to focus attention on individuals with special needs since they account for much of the plan's costs. This is an important article since it reminds consumers that they must play an active role in their own health care.
 

Managed Care and Long-Term Supports in Developmental Disabilities ****

  This is a position statement on "Managed Care and Long-Term Supports in Developmental Disabilities." It was developed by the Center on Human Policy at Syracuse University as part of a national project funded by the Robert Wood Johnson Foundation and the Institute on Disability at the University of New Hampshire. The document outlines important issues related to the rights of individuals with developmental disabilities and is recommended reading for any one concerned about developmental disabilities.

Meeting The Needs Of People With Chronic And Disabling Conditions In Medicaid Managed Care ****

  This fact sheet "Meeting The Needs Of People With Chronic And Disabling Conditions In Medicaid Managed Care" is available from the Families USA website. The fact sheet is part of a more extensive document that is available through Families USA for a fee of $20. Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans.The document covers important issues such as problems with managed care for individuals with special needs, assuring adequacy of care, and what advocates for those with special needs can do.

Consumer Bill of Rights and Responsibilities ****
 

This document is the Consumer Bill of Rights and Responsibilities. It was prepared by the Advisory Commission on Consumer Protection and Quality in the Health Care Industry as a Report to the President of the United States in November 1997.
The document covers the following areas:

Information Disclosure, Choice of Providers and Plans, Access to Emergency Services, Participation in Treatment Decisions, Respect and Nondiscrimination, Confidentiality of Health Information, Complaints and Appeals, Consumer Responsibilities.

The sections on choice of providers and plans, participation in treatment decisions, and complaints and appeals are of particular interest to individuals with special needs.
 

Choosing Quality: Finding the Health Plan That’s Right For You" is available from the National Commission for Quality Assurance (NCDA) ****

  This document "Choosing Quality: Finding the Health Plan That’s Right For You" is available from the National Commission for Quality Assurance (NCDA) website. It is available in both a PDF and text only format. The document is appropriate for anyone choosing a health plan, however it should be of interest to individuals with special needs who may need to choose a health plan. The document recommends that individuals evaluate their specific needs and ask several questions such as "will a plan cover alternative treatments?" It also informs individuals that health plan doctors must disclose to their patients all treatment options not simply the ones that the health plan will provide or cover.