books, globe, pc mouseResources on Health Care and Health Plans for People with Disabilities

Archived Page (provided for reference, but no longer updated)

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Understanding Managed Care

Glossary (if one definition seems unclear try another resource listed here!)

Managed Care Concepts  (Updated 12/000)

CareWorks Managed Care Dictionary 40 pages of terms!

Glossary of Managed Care Terms from DHHS

Managed Care Terms and Definitions Managed Care Resources, Inc.  20 pages of terms!  01/26/05 

Your Guide to Managed Care Contains 3 page section on Healthspeak: The Language Of Managed Care. 01/26/05

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What is Managed Care?  A fact sheet from The Arc.

Your Guide to Managed Care The ABCs of HMOs. Answers to the most commonly asked questions. How does managed care differ from traditional insurance? What are the differences between HMOs, PPOs and POSs? 01/26/05 

Healthcare's Front Line: Primary Care Physicians Why your family needs a primary care physician and how you can find the right one. 01/26/05

The H.M.O. Page  How Do HMOs Work?

Managed Care: What Consumers Need to Know  01/26/05 

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How to Pick a Plan

Consumer Assessments of Health Plans Study (CAHPS) The Agency for Health Care Policy and Research (AHCPR) is funding a 5-year project to help consumers identify the best health care plans and services for their needs. The goals of the Consumer Assessment of Health Plans (CAHPS) are to )01/26/05): National managed care quality Report - 01/26/05  2000. The National Committee for Quality Assurance(NCQA) released its fourth annual report which contains encouraging news for health care consumers. Across every single clinical quality measure NCQA examines, and in every region of the country, reporting plans made their largest gains ever in 1999. The report is based on an analysis of health plan performance data from Quality Compass® 2000, NCQA's database of managed care information, and the most comprehensive resource of its kind. The 466 health plan products submitting data to the 2000 edition of Quality Compass cover some 51 million people. 

NCQA's Health Plan Report Card - 01/26/05   has results on hundreds of managed care organizations that care for commercially insured individuals and Medicare and Medicaid beneficiaries. You can create a customized Report Card that shows results for the health plan or plans you want to know about.

Managed Care  questions to consider when choosing an HMO.

Managed Care Regulations by State  01/26/05 

Your Guide to Managed Care Contains section on picking a plan. 01/26/05 

Choosing and Using a Health Plan

How Do You Choose the Right Plan for You? 01/26/05 

Consumers Guide to Managed Care How you can choose a plan that will meet your particular health care needs. 01/26/05 

What Questions Do I Ask? 01/26/05 

Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser's Tool

California Health Scope A resource for making choices about your health care!

Checking Up on Doctors

Administrators in Medicine operate, an organization of state medical board directors, operates a Web site where you can find information on doctors in a growing number of states. This information includes disciplinary actions, but not malpractice histories (USA TODAY, May 19, 1997, P.3A).


book coverChoosing and Using an Hmo (Bloomberg Personal Bookshelf), by Ellyn Spragins, Hardcover - 255 pages (November 1997),  Bloomberg Pr.

Table of Contents


The Bloomberg Personal Bookshelf is a series of print products on personal finance that have been converted to 3-hour, two-cassette abridged audiobooks by DH Audio. Choosing and Using an HMO is an essential guide to a very difficult topic. The author has done a good job organizing her information, writing it and reading the final products. Spragins comes off as an expert. Furthermore, she successfully argues that the consumer needs this information. Anyone starting a family could benefit greatly HMO audiobook. It covers a lot of ground in a well-organized way. The audio is accompanied by a booklet of resources, worksheets and summaries. M.P. ©AudioFile, Portland, Maine.

book coverThe Complete Idiot's Guide to Managed Health Care (Complete Idiot's Guides), by Sophie M. Korczyk, Hazel A. Witte, Paperback - 300 pages (January 1998), Alpha Books

Table of Contents

Part 1: Getting Your Bearings

Part 2: Choosing (and Paying for) Your Coverage Part 3: Using Your Plan Part 4: Above and Beyond: When You Need Special Care Part 5: Your Right to the Right Care Glossary of Health Care Terms The confusing jargon of health care made clear.
From Print to Plug-In: Health Care Resources  What you may not know...but could find out.

Health Insurance : How to Get It, Keep It, or Improve What You'Ve Got, by Robert Enteen, Paperback - 307 pages 2nd edition (July 1996), Demos Vermande.

Table of Contents

1.   Health Insurance Basics
2.   Health Insurance Needs
3.   The Options Checklist
4.   Group and Individual Plans
5.   Blue Cross and Blue Shield Plans
6.   HMOs and PPOs
7.   Health Insurance "Pools" for "High-Risk" People
8.   Long-Term Care Insurance
9.   Short-Term Plans
10. Hospital Indemnity and Specified ("Dread") Disease Plans
11. Federal Employees Health Benefits Program
12. Veterans' Benefits
13. CHAMPUS (Civilian Health and Medical Program of the Uniformed Services)
14. CHAMPVA: Department of Veterans Affairs)
15. Medicare
16. Medicare Supplement ("Medigap")
17. Medicaid
18. Free and Low-Cost Care for the Poor
19. Continuation and Conversion of Coverage When Leaving an Employer Group Plan (Regular and Special "COBRA Options")
20. Maximizing Claims
21. Sources of Help When You Have Insurance Problems


  1. Definitions of Health Insurance Terms
  2. State Populations and the Percentage Uninsured
  3. State Health Care Reform Efforts
  4. State Reforms That Could Affect Programs for People with Disabilities
  5. Preexisting Conditions and Health Insurance
  6. States with Risk Pools and Open Enrollment Plans
  7. Blue Cross and Blue Shield Plans
  8. State Risk "Pool" Contacts
  9. State Insurance Departments
  10. State Agency Sources of Information on Long-Term Care Insurance
  11. Insurance Committees of State Legislatures
  12. Legislative "Bill Rooms" by State
  13. State Health Departments
  14. State Veterans Affairs Agencies
  15. Paralyzed Veterans of America (PVA) Chapter Roster
  16. Medicare Peer Review Organizations (PROs) (Part A)
  17. Medicare Carriers (Part B)
  18. State Medicaid Agencies
  19. State Workers' Compensation Agencies

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How to Evaluate Your Current Plan

Hot Topic -- How good is your H.M.O.? from Mainstream Magazine.

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Medicare and Medicaid

Center for Medicare Education - (added 6/00)

HCFA's Managed Care Manual  Managed Care Resource Information Directory.

Medicare Health Plan Compare - (added 12/28/00) helps you obtain detailed information on Medicare's health plan options. By "comparison shopping," you can find the plans that are best for you. Different comparisons you can make for plans include:

Medicare Coverage Policy  (added 12/28/00)

Medicare.Gov - official  U.S. Government Internet site for Medicare consumer information. It is designed to offer a variety of useful and easy to read information about Medicare.(added 12/17/00).

Medicare Managed Care - An on-line educational booklet.

Medicare Rights Center (MRC) - 01/26/05  national, not-for-profit organization that helps ensure that older adults and people with disabilities get good affordable health care..

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Medication Assistance Programs - (added 12/17/00) provides detailed information about each company's assistance program, including the company's name, the program's address, the telephone and fax numbers, guidelines and notes, the health care provider's role, the patient's role, information needed to initiate enrollment, information regarding the amount of medication and how it is dispensed, refill information, the estimated response time, and limitations of the program.

For a $5 processing fee for each medication requested, the site will assist the patient in the enrollment process. Patients without access to the Internet can contact a health care provider or a pharmaceutical company to receive information about medication assistance programs.

Other related sites include:

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Disability-related Issues


Deaf or Hard of Hearing - Health Care Services to People Who Are Deaf or Hard of Hearing Department of Justice Consent Decree regarding providing auxiliary aids and services, including qualified sign language interpreters, where such aids  and services are necessary for effective communication with persons who are deaf or hard of hearing or who have other communication-related disabilities. (added 12/17/00)
Disability and Managed Care Issues - 4/00 ILRU.

Guideline ClearinghouseTM - (added 12/28/00) public resource for evidence-based clinical practice guidelines. NGC is sponsored by the Agency for Healthcare Research and Quality (AHRQ) (formerly the Agency for Health Care Policy and Research [AHCPR]) in partnership with the American Medical Association and the American Association of Health Plans. Mission is to provide physicians, nurses, and other health professionals, health care providers, health plans, integrated  delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use.

Health Benefit Plans and the ADA - (added 6/00)  by Cornell University.

How Will Managed Care Fit Into the Lives of People With Disabilities? An article from the Hattie Larlham Foundation.

Guidance on the application of the Americans with Disabilities Act of 1990 to disability-based distinctions in employer provided health insurance - (added 6/00)

This interim enforcement guidance sets forth the Commission's [EEOC] position on the application of the Americans with Disabilities Act to disability-based distinctions in employer provided health insurance.
Information for Consumers of Managed Care - (added 6/00)

Managed Care and Persons with Disabilities: Information on Managed Care from the National Multiple Sclerosis Society. link not working as of 10/11/98

Managed Care: Dangers for Persons with Disabilities from the National Multiple Sclerosis Society.
MCare From the Institute on Disability at the University of New Hampshire.
Principles for Managed Care for People with Disabilities.
Window on Wellness - (added 6/00) gives  health and wellness information to people with disabilities who deal with the  managed care environment.

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Children with Disabilities

Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser's Tool updated 12/00
Parents Exchange
Children with Special Needs in Danger  link not working as of 10/11/98 xx2
Child Welfare League of America
Kids without Care
Children with Special Health Care Needs
Why Children are Not Little Adults
American Academy of Pediatrics Web Site
Children with Spina Bifida

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Developmental Disabilities

Position Statement on Managed Care and Long-Term Supports in Developmental Disabilities.

Issues in Adapting Managed Care Techniques to Developmental Disabilities.

Psychiatric Inpatient Stay for A Person with Developmental Disabilities.

Can Managed Care Work for the Developmentally Disabled? 10/11/98 resaching why link is not working!

Where Should We Stand On Managed Care?  Commonwealth Coalition for Community.

The National Clearinghouse on Managed Care and Long-Term Services and Supports for Adults with Developmental Disabilities and Their Families  Charting the Changing Tides of Managed Care and Long-Term Services.

MANAGED CARE and the Lives of People with Developmental Disabilities and their Families

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Mental Health

CCEMHC Bibliography on Managed Care  Books, articles and documents concerning mental health care, health care financing, professional and ethical issues: recommended reading.

NATIONAL MENTAL HEALTH SERVICES KNOWLEDGE EXCHANGE NETWORK - The Knowledge Exchange Network (KEN) is a  source of information and resources on mental health. Call 800-789-2647 or visit their Web site. (added 6/27/98)

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Physical Disability

The Keys To Managed Care -  (added  12/21/00) guide that helps people with physical disabilities who are already in managed care plans learn how they can get the best healthcare possible. Pprepared by the National Rehabilitation Hospital Center for Health & Disability Research, Paralyzed Veterans of America,  and the Eastern Paralyzed Veterans Association (EPVA) with input and careful review from a  number of healthcare consumers and professionals, 2000.

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Older People

The Elderly Have Unique Health Care Needs That May Be Unsuited For Managed Care  Advocates of expanding managed care in the senior population point to the successes achieved in the private market.
Managed Care FAQ xx1look again
Poor and Elderly Do Worse in H.M.O.'s - CNN, Oct. 1, 1996.

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Managed Care FAQ Reimbursement of Speech-Language Pathology and Audiology Services Under Private Health Plans and Managed Care.

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Spinal Cord Injury

Managed Care and H.M.O.'s - Spinal Cord Injury (SCI) update.

A Guide to Managed Ccare for People with Spinal Cord Injury

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Advocacy Issues

AN ALLIANCE AT RISK: The Disability Movement and Health Care Reform by Sara D. Watson, In the health care reform debate, one group with much at stake has been strangely absent: people with disabilities. Yet they are the core of the population that most needs health care and is most likely to be uninsured or underinsured. Proposals do not coherently address the needs of the very groups whose lives are most intertwined with the health care system.
Checklist for Readily Achievable Barrier Removal - (added 6/00) by Adaptive Environments Center, Inc. and Barrier Free Environments, Inc. 1995.

Do You Know Your Medical Rights?

The only way to ensure that your rights are respected is to know what they are. Find out about your rights and responsibilities as a patient.
Legal Protections for People with Disabilities in Managed Care  - (added 6/00)

Medicare failure to meet the needs of people with disabilities - especially non-elderly beneficiaries.  Includes discussion of Medicare standards for coverage of wheelchairs, scooters and other durable medical equipment. (Added 8/00)

Meeting The Needs of People With Chronic and Disabling Conditions in Medicaid Managed Care xxx fact sheet which discusses "carve-outs" and other methods used to address the health care needs of people with disabilities.

National Health Law Program - (added 6/00)  a national public interest law firm that seeks to improve health care for America's working and unemployed poor, minorities, the elderly and people with disabilities.

Steps to Take If You Are Not Satisfied With Your Health Care Services


book coverThe Insider's Guide to Hmos : How to Navigate the Managed-Care System and Get the Health Care You Deserve, by Alan J. Steinberg,  Paperback - 256 pages (September 1997), Plume Books.

Table of Contents

  1. What Is Managed Care?
  2. The Problems with HMOs
  3. The Problem of Capitation Capitalists
  4. How to See the Best Specialists for Your Needs
  5. Difficult Patients and the HMO Mentality
  6. The Special Problems of Medicare HMOs
  7. How to Choose the Safest and Best Health Insurance for Yourself and Your Family
  8. How to Choose the Safest and Best HMO for Yourself and Your Family
  9. Choosing the Best HMO Doctor for Yourself and Your Family
  10. Getting Around Red Tape and Overly Self-reliant Gatekeepers, and Obtaining Proper Hospital Care
  11. Your Pregnancy, Your Children, and Psychiatric Care
  12. A View Toward the Future: Quality in Place of Profit
Afterword: Managing Your Own Care with an MSA,  By Ronald Bronow
App. A Guide to When Primary-Care Physicians Should Refer to a Specialist
Sources of Further Information

book coverHealth Against Wealth : Hmos and the Breakdown of Medical Trust, by George Anders, Paperback - 304 pages Reprint edition,  Chapters Pub Ltd.

From's  Review:

If you have ever sought pre-approval for a necessary medical treatment, or have had problems arranging appointments with a specialist, or have seen a personal-care physician transferred to a distant clinic, George Anders's book on the growth of health maintenance organizations (HMOs) will confirm your worst fears. A reporter for the Wall Street Journal, Anders provides a series of horrifying case studies: a six-month-old baby who loses his hands and feet after a 42-mile journey to an HMO-approved emergency room; residents of a small town in Tennessee afflicted with an outbreak of a painful bowel infection who find that the drugs needed to suppress the epidemic are not covered; HMOs that select hospitals with low success rates for heart-bypass operations because of cost factors. Anders presents a powerful indictment of the emerging managed-care model for our national health-care system in this disturbing book.

From Booklist , November 1, 1996
Anders' analysis of managed care has at its core the supposition that HMOs are the de facto national health care policy of the U.S. and will cover employer-, Medicare-, or Medicaid-funded health insurance for four out of five Americans by the year 2000. He notes that the "takeover" of health care by HMOs resulted from market forces seeking to contain costs in a bloated health delivery system, and this takeover came about without a single citizen referendum or congressional vote. This book is for any ordinary person seeking to understand the issues surrounding the explosion of HMO influence and to learn what HMOs do well and where they fail. Anders is forthright in his critique of HMOs. He identifies the worst problems in managed care and considers possible solutions. His premise is that people primarily seek health insurance in order to have some medical security in a crisis. The reality of that security is often in doubt as Anders, through numerous interviews, relates stories of experiences that individuals have had with HMOs in times of crisis. Anders suggests that employers may eventually bypass HMO middlemen by dealing directly with doctor and hospital groups that are well managed and committed to cost containment but are also committed to high-quality patient care.
Mary Whaley, Copyright© 1996, American Library Association. All rights reserved.

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Advocacy Resources

ADAPT (AMERICAN DISABLED for ATTENDANT PROGRAMS TODAY) American Academy on Physician and Patient - (added 12/28/00)  is a professional society dedicated to research, education, and professional standards in doctor-patient communication. Its goal is no less than to change the practice of medicine by helping doctors relate more effectively to each patient.

California Managed Health Care Improvement Governor's Task Force - Meeting the Needs of People with Disabilities Reccomendations drafted by Laura Remson Mitchell, Government Issues Coordinator, Multiple Sclerosis California Action Network.

The Center on Human Policy is a Syracuse University based policy, research, and advocacy organization involved in the national movement to insure the rights of people with disabilities. Site includes a helful group of disability-related links.

Center for Studying Health System Change (HSC) - (added 12/11/00) a non-partisan policy research organization which provides analyses about the effects of health system change to inform the thinking and decisions of policy makers in government and industry. HSC does not advocate policy positions, but is a resource for decision makers on all sides of the issues because of its reliable data and objective analyses.

Citizens for the Right to Know -  (added 12/17/00) a network of approximately 80 consumer and specific disease organizations representing hundreds of thousands of people across the country. Members share a common need -- access to quality information on health care plans in order to make informed consumer choices. The objective is to pursue basic consumer fairness in health care by requiring insurers, health service organizations and HMOs to provide people with necessary information on coverage principles, benefits and any exclusions or restrictions. Includes information on:

Consumer Coalition for Quality Health Care a national, non-profit membership organization of consumer groups dedicated to protecting and improving the quality of health care for all Americans. The Coalition advocates for consumer protection and quality improvement programs and policies in the public and private sectors. Members are a diverse group of organizations representing over 35 million people that include the elderly, children, the disabled, nurses, hospital workers and public employees.

Data Guide: Using Data: A Guide for Community Health Activists - (added 12/28/00) An introduction to getting and using data for the data-shy. Guide discusses the value of using quantitative and qualitative data to score points with health care providers, funders and the media. It suggests where to go to get data, and describes some simple ways to present it and an appendix of specific sources for various types of  data.

Health Rights Hotline - (added 12/17/00) helps people take charge of their health care. Part of taking charge involves understanding your health care rights. Site provides some general information about your rights as a health care consumer. Although information is based on California law, it may still be useful even if you live in another area.

Disability Related Advocacy Links

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. It works at the national, state and community levels and is as an effective voice for health care.

National Organization of Physicians Who Care  provides legislative updates and other information regarding happenings in health care.

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Medical Information

Consumer Reports evaluated medical information sites on the Web, and has concluded, The wealth of useful medical information available online is well worth the initial difficulty of finding one's way around this new world -- and the constant need to be on guard against dubious material. They recommend: And two searchable databases: Current  health news articles, from Medical Tribune News Service and leading daily newspapers, on a variety of health topics, written  for general readers  and health professionals.

Texas Cancer Data Center (TCDC) provides online cancer information on health professionals, facilities and services, cancer statistics,
population, and community resources. TCDC is funded by the Texas Cancer Council, the state agency whose goal is to improve the availability
and quality of cancer services and information in Texas.

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Research Projects on Managed Care and Disability

Research - Agency for Healthcare Research and Quality (AHRQ) (added 12/17/00) focuses on health care equality and the outcomes of health care services.

Research and Training Center on Managed Care and Disability  information about the NRH-RC/ILRU collaborative center.

Building Health Systems Grantees from the Center for Health Care Strategies (CHCS)

Medicaid Demonstration Project of New York State

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Other Resources

Before You Go to the ER, Read This  Do you know when a trip to the emergency room is called for and when it is just a waste of time and money? Includes how to prepare for a real medical emergency.

Health, Wellness and Aging with Disability Reviews what is currently known regarding aging with disability; list new realities, new concerns regarding health, exercise, maintaining functional abilities, and many research questions; advocating for health reform and more; best practice information and guidelines; health services, assessment and evaluation guidelines; need for national information and dissemination network; role of independent living centers and other disability-related organizations; horror stories; and tips for weighing whether you'll use the gear; definitions; includes resource list (described below) and recommended readings.

Resource List: Wellness, Self-Care, Exercise & Aging with Disability Edition III

Be a Savvy Health Care Consumer, Your Life May Depend on it! Provides information on seeking and receiving proper medical care and keeping your own medical records. Provides disability-specific strategies and examples. Helpful checklists include: Visit Strategies; Outline for Information Giving; Procedures, Tests and Consultations; Medication; What to look for in Health Care Providers; and Hospitals: Be Assertive about Your Needs. Provides suggestions for what to take while traveling and an Emergency Health Information form. Recommended for anyone who interacts with health care providers or is an advocate.

Health, Wellness and Aging with Disability

All Hospitals Are Not Created Equal Do you know how to find a hospital that suits your needs?

Surgery on the Go Increasingly more procedures are done on an outpatient basis. Are you a candidate for outpatient surgery?

cover of bookHealth Care Choices for Today's Consumer : Guide to Quality and Cost,  by Marc S. Miller (Editor), Families United for Senior Action Foundation, Philippe Villers, Paperback - 457 pages Revised edition (August 1997), John Wiley & Sons.

Table of Contents

  1. A User's Guide to Health Care Choices for Today's Consumer By Marc S. Miller
  2. Healthy Living By Rena Convissor, Audrey Chang
  3. Consumer Rights By George J. Annas
  4. Health Insurance: Managing Managed Care By Nancy Turnbull
  5. Primary Care By Harriet Tolpin
  6. Hospitals By Joseph Restuccia, Alan Labonte, Jeffrey Gelb
  7. Medications By Joe Graedon, Teresa Graedon
  8. Parents as Health Care Consumers By Nora Wells
  9. Women as Health Care Consumers By Martha Snyder Taggart
  10. Men as Health Care Consumers By Jeffrey Kellogg
  11. Elders as Health Care Consumers By Lou Glasse, Mal Schechter
  12. On the Job: Health and the Workplace By Nancy Lessin, Laurie Stillman
  13. Physician Specialists By June Ellen Mendelson
  14. Mental Health By Cindy Brach, Gail K. Robinson
  15. Long Term Care By Peggy Denker
  16. Home Care By Anne P. Werner, James P. Firman
  17. Caring for Your Teeth By Robert Krughoff
  18. Buying Eyeglasses and Contact Lenses By Robert Krughoff
  19. Alternative Health Care By Nicolas P. Carballeira
  20. Death with Dignity By George J. Annas
  21. Unreformed Health Care By Ron Pollack
  22. Helping Yourself: A Guide to Self-Help Groups, Going Online, and General Resources for Health Care Consumers  By Martha S. Grover
App. A. The Short List: Selected National Resources
App. B. Toll-Free Health Help
App. C. Emergency Health Care Phone Numbers

California Resources

California Department of Managed Care - (added 12/18/00)

HealthScope - Pacific Business Group on Health (PBGH) California Consumer is an independent source of information to help select the best quality health plans, hospitals, and medical groups. (added 12/17/00)

Office of Statewide Health Planning and Development (OSHPD) - (added 12/28/00) a department of the California Health and Human Services Agency. Its mission is to plan for and support the development of health care systems, which meet the current and future needs of the people of


Resources for Choosing Health Care Providers

American Medical Association Physician Select - Provides basic professional information on  virtually every licensed physician in the United States and its possessions, including more than 690,000 doctors of medicine (MD) and doctors of osteopathy or osteopathic medicine (DO). AMA member physicians are offered an "expanded" listing that contains additional information such as office hours, practice philosophy, physician achievements, and other helpful information for visiting consumers. All physician credential data have been verified for accuracy and authenticated by accrediting agencies, medical schools, residency training programs, licensing boards, and other data sources. (Updated 3/1/01)

Physician specialty certification information - Owned and operated by the American Board of Medical Specialties. Does not contain all specialty boards but includes over two dozen. (Updated 3/1/01)

Providers, Comprehensive Information - about more than 500,000 doctors, and other health care providers in the United States. You can rate your doctors, search for details about a particular provider, and compare details about multiple providers in your area.  (Updated 3/1/01)

Examples of what you can do:
Provider Licensing and Disciplinary Information - Association of State Medical Board Executive Directors, you can find information on doctors in a growing number of states. This information includes licensing data and may or may not include information on hospital disciplinary reports, malpractice judgments, arbitration awards and malpractice histories. (Updated 3/01/01)

Search for the Right Surgeon Not every surgeon in skilled at every type of procedure. Before you schedule an operation, find out how to choose Dr. Right. (Updated 3/1/01)

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© 1998-2018 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
 Created 4/7/98  |  Updated  1/26/05