inside body stylized organ view Health, Wellness and Aging with Disability

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Updated 01.2.13

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Active Health Care Consumer Strategies

Be a Savvy Health Care Consumer, Your Life May Depend on it!1998, 95 pages,  (updated 4/8/98)

Articles excerpted from this book: Checking Up On Doctors   (added 1/4/98)
Administrators in Medicine operate an organization of state medical board directors. They sponsor a Web site http://www.docboard.org 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).

MemoryMinder Book Cover MemoryMinder: Personal Health Journa, by  Frances E. Wilkins, D. Wilkins, Paperback Revised edition (August 1993)
                 Memory Minder.

Checklist format, spiral binding, provides an organized and accurate  way to track vitamins, herbs, medications, diet, exercise, symptoms, progress, and all the other factors that make up your personal health picture.  It's been called  "a service record for your body!"

book cover The Intelligent Patient's Guide to the Doctor-Patient Relationship: Learning How to Talk So Your Doctor Will Listen, by Barbara M. Korsch, Caroline Harding, Hardcover - 304 pages Reprint edition (September 1998), Oxford Univ Pr (Trade).

Looks at the ways doctors and patients communicate with each other, and how both sides of the interaction can be improved. Barbara Korsch talks about being belittled and patronized in interactions with her doctor--and he knew she was a fellow physician! This guide, based on Korsch's 50 years of research into doctor-patient dialogue, takes you, through each step of your interactions with physicians. It illustrates how to start on the proper note and continue until you get the information and treatment you need.Tells how to ask the right questions, understand the answers, and how to survive managed care. Also offers insight into the doctor's side of the relationship, showing how doctors are trained to be task oriented and how their natural human sympathy is discouraged at work.

book cover Preparing for Surgery : A Mind-Body Approach to Enhance Healing and Recovery  by William W. Deardorff, John Reeves (Contributor), Paperback - 160 pages (June 1997), New Harbinger Pubns.

Even a relatively minor operation is still an assault to the system--and a source of anxiety and stress. Studies and research suggest that mind-body preparation for surgery can help relieve anxiety and reduce the severity of physical symptoms following an operation. This workbook distills the results of these studies into a usable, supportive guide.

book cover Take This Book to the Hospital With You, by Charles B. Inlander, Ed Weiner (Contributor), Mass Market Paperback - 328 pages Reissue edition (October 1997), St Martins Mass Market Paper. (added 12/28/99)

Advice for a planned or unexpected hospital stay, it arms consumers with the tools to manage the dangerous pitfalls and medical minefields of hospitalization.

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Aging Well with Disability

Aging With Developmental Disabilities: Women's Health Issues - (added 6/00)

audio cassette Aging With Disability, audio cassette, April 1994, approximately 60 minutes (added 11/20/97)
Informal discussion with first-year medical students.

Aging with a Disability Physical Medicine and Rehabilitation Clinics of North America February 2005 (Vol. 16, Issue 1) posted 01/29/05
 Table of contents and short abstracts (word file)

Aging with Disability - summary is adapted and distributed for use with permission. The material was excerpted and adapted from an application submitted by: Rancho Los Amigos National Rehabilitation Center in collaboration with The University of Southern California and The University of California, Irvine, to NIDRR for a RRTC on Aging with a Disability in August 1998. (added 2/5/01)

Aging with Disability: Another Advocacy Priority, January 1990, 2 pages, (added 11/20/97)

One of the first consumer focused articles broadening the aging with disability issue beyond polio and spinal cord injury. Details personal experience, sometimes humorously, of aging with cerebral palsy and the frustration with the medical community's lack of knowledge. Advocates for more research, more involvement of people with disabilities and more advocacy to address the results of aging with a disability.

Aging with a Disability: Conclusions after a Visit to the USA  Bergen, March 1998, by By Janicke Kilian and Terje Binder, A short version of a Norwegian report (added 4/8/98)

Aging with a Disability: Educating Myself, in Generations, Journal of The American Society on Aging, Vol. XVI, No. 1, Winter 1992. (added 11/20/97)

A more in-depth article than "Aging with Disability: Another Advocacy Priority." Details personal experiences about the lack of information related to aging with a disability. Applauds Trieschmann's 1987 book, Aging with Disability, as a first step to identifying the real problems facing people with disabilities who are middle-aged or nearing retirement. Lists specific questions in key areas (research, prevention, nutrition and advocacy) which need answers.

Center for Disability Issues and the Health Professions  ( added 11/99) at Western University of Health Sciences is working to enhance health professions education, and to improve access for people with disabilities to health, health education and health care services. The Centers primary goals include:

1.) improving health professionals' understanding of the "whole" person with a disability, through the development of curriculum that is integrated into the students' education at pre- and postgraduate levels,

2.) increasing the number of qualified health professionals with disabilities through development and implementation of a recruitment program and University support services,

3.) developing and delivering training for people with disabilities regarding effective access, use and communication so that they may become active participants in their health care.

4.) developing and distributing research on community-based health education, prevention and health care services for people with disabilities.

Depression: What The Consumer Needs To Know  (added 4/8/98)

book cover Getting over Getting Older :An Intimate Journey, by Letty Cottin Pogrebin, Paperback - 336 pages (May 1997), Berkley Pub Group. (added 12/28/99)

No disability -specific content, but a good read. Faced with turning 50, Letty Cottin Pogrebin, founder of Ms. says her reactions ranged "from astonishment to anger, from confusion to curiosity, from denial to disgust." Using herself as a compass and adding many other well- known voices, Pogrebin's irreverent book takes on friendship, sex, love, dieting, mothering adults, the physical and emotional depredations of aging, and mortality. Rather than stubbornly toeing the line on spurning plastic surgery, for example, she thoughtfully explores "the tension between artificiality and authenticity." In the end, she concludes, one can devote one's remaining years to lamenting and running after lost youth or put that time to far better uses.

Health, Wellness and Aging with Disability, 1995, Revised 1998, (updated 4/8/98)

Hospitals

 

Hospital ratings, track records available online last accessed  5/2012 -Using data from government agencies and private watchdogs, several websites provide consumer

<> <>Information on preventing secondary conditions from the Research and Training Center on Independent Living at the University of Kansas. Last accessed 12.28.12 

Later Life Effects of Early-Life Disability: Comparisons of Individuals Aging with Polio, Spinal Cord Injury and Stroke to Age-Matched Controls (added 4/28/98)

Final Report, by Margaret L. Campbell, Ph.D., August 1, 1994, Funded by: The National Institute on Disability and Rehabilitation Research. Published by: The Rehabilitation Research & Training Center On Aging with Disability Rancho Los Amigos Medical Center To order, $25.00 which includes shipping and handling (California residents add 8.25% tax) to: Los Amigos Research and Education Institute, P. O. Box 3500, Los Amigos Station Downey, California  90242

Mental Health Services Knowledge Exchange Network (added 1/4/98) The Knowledge Exchanged Network (KEN) is a  source of information and resources on mental health. Telephone  800-789-2647.
 

Proceedings of  Meeting the Challenges of Aging with a Disability: Lessons Learned from Post Polio and Stroke, A Research Update with Practical Applications,  March 19-20, 1993, Long Beach, California. (added 1/6/98)

Pain management from US News Online - (added 6/00).

Personal Perspectives on Giving: On Giving Out, Giving In, Giving Up and – Giving Back by by Linda Gonzales   01/26/05

http://www.crowdbcm.net/Gonzales-on-Giving.htm

Quality Of Life While Aging With A Disability - by Bryan J. Kemp, Ph.D., Rancho Los Amigos National Rehabilitation Center And The University of Southern California 2000. (added 2/5/01)

Rehabilitation Research and Training Center on Aging with a Disability  -  (added 12/28/99) one of two rehabilitation centers located at Rancho Los Amigos National Rehabilitation Center in Downey, California. The second Center is the Rehabilitation Research and Training Center on Aging with Spinal Cord Injury. Both Centers:

Rehabilitation Research and Training Center on Aging with Mental Retardation -  (added 12/16/00)

Rehabilitation Research and Training Center on Health and Wellness - Conducts research and training to support the health and wellness of persons with long term disabilities.  Address the conditions of cerebral palsy, multiple sclerosis, post-polio syndrome, amputation and spinal cord injury, but the web site is of value to all people with disabilities.  The primary host of the Center, the Oregon Institute on Disability & Development at Oregon Health & Science University in Portland, Oregon. (added 8/16/01)

The Center address these priority areas:

Resource List: Wellness, Self-Care, Exercise & Aging with Disability (Edition IV - 1998), 63 pages, (updated 4/8/98) Rural Secondary Conditions, Health, Wellness and Managed Care - (added 12/28/99) contains fact sheets, research reports, publications, and links on health and disability resources. Rural Health Research Team:


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Assistive Technology

ABLEDATA - ( added 11/99) provides information on assistive technology and rehabilitation equipment available from domestic and international sources. Its database contains:

Alliance for Technology Access - (ATA) (added 11/99) a national network of community-based resource centers dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies.

book cover Computer Resources for People With Disabilities : A Guide to Exploring Today's Assistive Technology, by the Alliance for Technology Access, Paperback 2nd edition (September 1996), Hunter House. (added 12/28/99)

Provides an overview of the state of the art of redefining human potential through computer-assisted communication. A vast clearinghouse for the different technologies available and their applicability to the lives and tasks of people with various disabilities.

Med-Sell - helps people buy and sell USED medical equipment and find accessible HOUSING. This includes: wheelchair equipped vans, scooters, hospital beds, canes, walkers, Sleep Apnea machines, TENS units, ramps, hand controls, hoyer lifts, wheelchairs, electric wheelchairs, transfer benches, commodes, cushions, standing frames, stair glides, curb-siders, doctor's office equipment and hospital medical equipment.

book cover The Manual Wheelchair Training Guide, by Anita Perr, Peter Axelson, Jean Minkel, Denise Chesney, Paperback - 141 pages (October 1, 1998)

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Complimentary Approaches

Acupuncture - Fine Points of  - Skeptical about alternative forms of medicine? You may be surprised by research that shows how acupuncture—an ancient Chinese therapy—helps the body help itself. (added 12/28/99)

Alternative and Complementary Medicine Center of HealthWorld Online (added 12/28/99)

Alternative & Complementary Therapies site of  the American Caner  Association. (added 12/28/99)

Center for Alternative Medicine Research in Cancer, (University of Texas at Houston) (added 12/28/99)

Chiropractic: Just the Right Touch
Millions of Americans turn to chiropractic for the aches and pains that ail them. Could this alternative approach to medicine help you? (added 12/28/99)

National Center for Complementary and Alternative Medicine (NCCAM) - of National Institutes of Health (NIH), conducts and supports basic and applied research and training and disseminates information on complementary and alternative medicine to practitioners and the public. The Center's purpose is to "facilitate the evaluation of alternative medical treatment modalities" to determine their effectiveness. The mandate also provides for a public information clearinghouse and a research training program. NCCAM does not serve as a referral agency for various alternative medical treatments or individual practitioners.  (update 01/16/05, added 12/28/99)

Rosenthal Center for Complementary and Alternative Medicine, Columbia University - created in 1993 was one of the first centers at a major medical school devoted specifically to research, education and training in complementary and alternative medicine. (added 12/28/99)

WellnessWeb Alternative/Complementary Medicine Homepage - (update 01/16/05, added 12/28/99)

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Ethnic and Cultural Diversity - Equity and Access

Bridging the Barriers of Telehealth to Underserved Populations: Barriers and Opportunities 

Updated 01/16/05, added 12/21/00), Neal Neuberger, Louise Arnheim, John C. Scott, and Keith Krueger
1998 Report examines the unique characteristics and risk factors among children and the elderly, minorities, inner city and rural poor, and persons with disabilities that argue for special consideration during the development and deployment of communications technologies. This workshop sought to identify several broad areas that must be addressed if telecommunications services are to reach these underserved populations in the near future.
National Coalition of Hispanic Health and Human Services Organizations (COSSMHO) - (added  12/21/00)
Focusing on the health, mental health, and human services needs of the diverse Hispanic communities in the United States, COSSMHO's membership consists of thousands of front-line health and human services providers and organizations. COSSMHO attempts to connect communities and create change to improve the health and well-being of Hispanics in the United States.
New York Online Access to Health (NOAH) - (added 12/21/00)
NOAH brings health information to an underserved population of consumers, many of whom are Spanish-speaking. Resources about several different health topics, ranging from aging to tuberculosis are available in both English and Spanish. NOAH's bilingual service is available in 100 partner libraries throughout New York City's five boroughs and Westchester County, and from additional sites on the CUNY campuses.
Office of Minority Health Resource Center - (added 12/21/00)
Department of Health and Human Services Office of Minority Health established the Office of Minority Health Resource Center in, serves as a national resource and referral service for minority health issues. Comprehensive databases on a wide variety of health topics affecting minority populations. One database includes extensive information on funding and grant resources that can help support minority health projects.
Tribal Connections in the Pacific Northwest - (added 12/21/00)
Provides assistance to 16 tribes and Native villages in Alaska, Idaho, Montana, Oregon, and Washington. The goal of the project is connecting the tribes to the Internet with the aim of providing access to health information.


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Exercise

American Council on Exercise® - (ADDED 12/28/00) provides a list of more than 40,000 ACE-certified fitness professionals to help you meet your health and fitness goals. (ACE®) is a nonprofit organization committed to promoting active, healthy lifestyles and their positive  effects on the mind, body and spirit. ACE pledges to enable all segments of society to enjoy the benefits of physical activity and protect the public against unsafe and ineffective fitness products and trends. ACE accomplishes this mission by setting certification and education standards for fitness instructors and through ongoing public education about the importance of exercise.

Disabled Sports USA offers nationwide sports rehabilitation programs to anyone with a permanent physical disability. 451 Hungerford Dr., #100, Rockville, MD 20850. 301-217-0960. Posted 01/29/05

Exercise: A Guide from the National Institute on Aging - a guide for anyone who wants to take the first steps toward an active lifestyle. The scientists and doctors at the National Institute on Aging at the National Institutes of Health produced this guide. It provides information about how to exercise, good nutrition, and tips on establishing and maintaining a regular exercise program.  People with a variety of disabilities and activity limitations can easily adapt, tailor and use this information. posted 01/29/05

Exercise Videos - (added 6/00).

Fitness Equipment online:

Fifty-Plus is an international organization devoted to information about, motivation toward, and participation in exercise and fitness while aging. We believe that the bridges between those all
important elements of involvement are crucial and the unique reason for our existence.

Fitness Management's Fitness Word - (added 2/3/00), three articles:

National Center on Accessibility – focuses on universal design and practical accessibility solutions creating inclusive recreation opportunities for people of all abilities. Offers information on recreation, parks and tourism. 2805 East 10th Street, Suite 190, Bloomington, IN 47408-2698, Voice: (812) 856-4422 TTY: (812) 856-4421. posted 01/29/05

National Center on Physical Activity and Disability
  (NCPAD)- (updated 01/16/05) encourages people with disabilities to participate in regular physical activity as a means of promoting healthy lifestyles and preventing development of secondary conditions.  NCPAD gathers, organizes, evaluates, summarizes synthesizes, and disseminates information on physical activity and disability. Offers many resources on fitness.

United States Cerebral Palsy Athletic Association - (added 12/28/00) provides individualized sports training and competitive opportunities for athletes with cerebral palsy, or other related challenges, such as traumatic brain injuries or stroke.

Recreation A Great Way to Be Active - (added 6/00).

Recommended books on exercise available from:amazon.com link

cover of book Biomarkers: The 10 Keys to Prolonging Vitality,  by William Evans, Irwin H. Rosenberg (Contributor), Jacqueline Tompson, Paperback Reprint edition (August 1992), Fireside.

Conditioning With Physical Disabilities, by Kevin F. Lockette, Ann M. Keyes, Paperback - 272 pages (May 1994),  Human Kinetics (T).

                            Pt. I. Components of Physical Conditioning

                            Ch. 1. Exercise Readiness Assessment
                            Ch. 2. Strength Training
                            Ch. 3. Aerobic Training
                            Ch. 4. Flexibility Training

                            Pt. II. Disability Profiles and Conditioning Programs

                            Ch. 5. Conditioning With Cerebral Palsy, Stroke, and Head Injury
                            Ch. 6. Conditioning With Spinal Cord Injuries, Spina Bifida, and Poliomyelitis
                            Ch. 7. Conditioning With Amputations
                            Ch. 8. Conditioning With Other Physical Disabilities

                            Pt. III. Conditioning Exercises and Classes

                            Ch. 9. Upper Extremity Exercises
                            Ch. 10. Abdominal and Trunk Exercises
                            Ch. 11. Lower Extremity Exercises
                            Ch. 12. Elements of a Good Exercise Class

                            Appendix A: Accessible Exercise Equipment
                            Appendix B: Fitness and Sports Associations

                            Glossary
                            Sources
                            Evaluation of the Book

book cover Prime Moves : A Step-By-Step Fitness Program for a Healthier Life, by Diane Edwards, Kathy Nash (Contributor), Paperback - 216 pages (November 1992), Avery Pub Group.

Seat-A-Robics (added 11/20/97)

Sit and Be Fit:Pre-Aerobic 2, Video Release Date: March 23, 1998, NTSC format (for use in US and Canada only), Color, NTSC, Number of tapes: 1, Rated: NR, Starring: Mary Ann Wilson, et al. Run Time: 75 minutes.

Sit and Be Fit:Pre-Aerobic 3, Video Release Date: March 23, 1998, Run Time: 37 minutes, NTSC format (for use in US and Canada only), Color, NTSC, Number of tapes: 1, Rated: NR, Starring: Mary Ann Wilson, et al., Run Time: 80 minutes

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Home Modifcation

Home Modifcation Resource Center - (added 12/28/99) offers practical strategies and materials for policymakers, practitioners, consumers, manufacturers, suppliers, and researchers. Focus includes:

Managed Care for People with Disabilities


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Reference Tools

Accessible Exam Table - (added 12/16/00)

Directories from MEDLINEplus (added 2/14/02)

DRM Regional Resource Directory features thousands of disability-related local agencies and organizations, arranged by state and subdivided by topic (updated 8/15/01)

Merck Manual of Diagnosis and Therapy - (updated 8/15/01)

Nutrition - Tufts University Nutrition Navigator helps sort through the large volume of nutrition information on the Internet and find accurate, useful nutrition information. (updated 8/15/01)

Medication

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 http://www.themedicineprogram.com 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:

1999-2000 Directory of Prescription Drug Patient Assistance Programs - (added 12/17/00)

Medical Letter for Drugs and Therapeutics - (updated 8/15/01)

MEDLINEplus Drug Link - (added 12/17/00)

Medwatch - safety information on the drugs and other medical products regulated by the U.S. Food and Drug Administration. (updated 8/15/01)

U.S. Food and Drug Administration - (added 12/17/00)

U.S. Food and Drug Administration Consumer information - (added 12/17/00)

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Self-Help

ClinicalTrial. Gov - (added 6/00) provides information on more than 4,000 Federal and private medical studies, the location of clinical trials, their design and purpose, criteria for participation and information about the disease and treatment being studied.

Removing Barriers to Health Care: A Guide for Health Professionals - (added 6/00).

Self-Care Central: (added 12/28/99, updated 3/3/01)

Self-Help Sourcebook: Your Guide to Community & Online Support Groups (6th Edition -1998) , by Barbara J. White (Editor), Edward J. Madara (Editor) , Paperback - 348 pages 6 edition (January 1998), Northwest Covenant Medical Center. (added 12/28/99)

Information on over 800 national, international and model self-help groups that cover a broad range of illnesses, addictions, disabilities, parenting concerns, bereavement and many other stressful life situations. Includes websites and/or e-mail addresses for over 70% of the
nat’l/int’l groups listed!, chapters on starting and running a mutual aid group, to include section for professionals on their potential role in helping, how to develop online discussion (listserv) groups and newsgroups, summarizes research outcome studies reflecting the value of self-help groups.
 
 

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Traveling

Health information on specific destination - (added 12/28/00)

Travel Tips for Older Americans - (added 12/28/00)

U.S. State Department, Bureau of Consular Affairs  - Travel Tips for Older Americans

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Women's Issues

A Provider's Guide for the Care of Women with Physical Disabilities & Chronic Medical Conditions- (added 6/00).

Allison Brown's RESEARCH healthpage for older women with disabilities - (added 6/00) designed to be both a resource for older women with disabilities and an exploratory aid for research. Covers health promotion and related issues, with a particular emphasis on aging with certain developmental disabilities, ncluding mental retardation, cerebral palsy, and Down Syndrome.

ACCESSIBLE MAMMOGRAMS - An  accessible system is becoming more widespread.  Older systems required technicians to hold on the individual in the standing position, but with Contour Mammography System, the individual can remain seated in a wheelchair while a tilt arm conforms to her position.  Approximately 400 of the Contour systems are in use.  Call Bennett X-ray Technologies the manufacturer to locate one in your mayor 516-691-6100 (NewMobility / January - February 1995).

Breast  Health Access Project for  Women with Disabilities  (added 3/28/99)  first of its kind project in Berkeley, California that provides potentially lifesaving services to a population of women  whose breast health needs  have, until now, been overlooked. BHAWD c/o Alta Bates Summit Medical Center, Herrick Campus, Rehabilitation Services, 2001 Dwight Way, 2nd Floor, Berkeley, CA 94704 Voice (510) 204-4866 TDD (510) 204-4574 FAX (510) 204-5892.

Center for Research on Women with Disabilities (CROWD) (added 11/20/97) A research center that focuses on issues of health, aging, civil rights, abuse, and independent living. Works to promote, develop, and disseminate information to expand the life choices of women with disabilities so that they may fully participate in community life. Researchers develop and evaluate models for interventions to address specific problems effecting women with disabilities. Offers recent research findings and list current, past and future research projects.

Disabled Women's Network (DAWN) Ontario a progressive, volunteer-driven, feminist organization promoting social justice, human rights & the advancement of equality rights through education, research, advocacy, coalition-building, resource development, & information technology. updated 01/29/05

Comprehensive Healthcare Center for Women with Physical Disabilities, PittsburghPA - provides comprehensive healthcare to women with a physical disability in a barrier-free medical setting. 01/26/05 

Federal Resource Center for Women with Disabilities (added 8/26/99) new resource plans to offer summaries about critical health issues for a variety of people with disabilities, including physical, neurological, hearing, speech and visual impairment. Includes links to sites sponsored by private sector advocacy groups, and special information on the unique needs and concerns of minority women with disabilities. Their toll-free number 1 800 9994WOMAN connects to a health information specialist who will refer the caller to the right source of information. Women and their health care providers can also order fact sheets, brochures and other printed materials by phone. Information specialists are available on its toll-free telephone service from 9 a.m. to 6 p.m. eastern time.

Financing Health Care for Women with Disabilities by Janice Blanchard and Susan D. Hosek, 2003 - Women with disabilities, a underserved when it comes to health care services appropriate to their needs. Although these needs are well documented, the barriers that may prevent these women from obtaining appropriate care are less understood. This paper describes the major financial issues affecting access to health care for women with disabilities and presents recommended strategies to address those issues. Posted 01/26/05

Focused Investigation on Risks of Osteoporosis - The Effects of Age, Disability and ERT on Bone Mineral Loss: A comparison of Female Polio Survivors and Age-Matched Controls, Margaret L. Campbell, Ph.D., Principal Investigator; Darryl A. Quinn, M.A., Graduate Research Assistant; and Victor G. Ettinger, M.D., Bone Diagnostic and Treatment Centre, Long Beach, CA . 1994  (updated 11/02)

GET A CERTIFIED MAMMOGRAM - For a safe and reliable mammogram, make sure you go to an FDA-certified facility.  The agency sets strict standards fro equipment, personnel, record-keeping, and reporting results.  To confirm certification or to find a certified facility in your area, call the Cancer Information Service at 800-4-CANCER.  Or visit the mammography listings page on the FDA's web site. Source: Consumer Reports on Health, March 1998

Mammograms  (added 11/20/97)

An  accessible system is becoming more widespread.  Older systems required technicians to hold on the individual in the standing position, but with Contour Mammography System, the individual can remain seated in a wheelchair while a tilt arm conforms to her position.  Approximately 400 of the Contour systems are in use.  Call Bennett X-ray Technologies the manufacturer to locate one in your area 516-691-6100 (NewMobility / January - February 1995).

Health Promotion for Women with Disabilities  - Villanova University College of Nursing’s (added 11/02) site contains a variety of topics related to health and health promotion important for women with disabilities:

Pap smear e-mail service  - sign up to get a reminder when it is time for your annual pap smear. Scheduling and having a Pap smear every year is one of the most important things a woman can do to help prevent cervical cancer.  (added 12/28/99)

book cover Every Woman's Essential Guide, by Alan R. Gaby, Paperback - 320 pages Reissue edition (May 1995), Prima Pub (P).  (added 12/28/99)

Covers what osteoporosis is, why it is so prevalent, what women can do about bone loss, and how diet and exercise affects this condition.

National Osteoporosis Foundation - (added 12/17/00)

Partners in Health Care:  Women with Disabilities & Their Health Care Providers - (added 6/00).

Reproductive Health for Women with Spinal Cord Injury: Part One-The Gynecological Examination (added 1/4/98)

Table Manners:  a Guide to the Pelvic Examination for Disabled Women and Healthcare Providers. Ferreyra, F. & Hughes, K. June 1992, 3rd printing, 1991. CONTENT:  Provides specific information regarding reproductive health care with physical, visual, and hearing disabilities. Includes information on alternative positioning for examination, transfer to the examination table, and other specific considerations. COST:  $1.50, make check payable to Planned Parenthood Alameda/San Francisco or indicate type of credit card, MasterCard or Visa, credit card number and expiration date. Credit card purchases require an additional 3% charge, based on the total order. Sales tax, appropriate to your county, applies only to California residents. SEND:  Sex Education for Disabled People, Planned Parenthood Alameda/San Francisco, 815 Eddy Street, San Francisco, CA 94109. INFO:  415-441-7858. Entered:  9/29/95

Women's Health and Aging with Developmental Disabilities - (added 6/000 Electronic Discussion Group on. To subscribe to the forum, send email message to Listserv@listserv.uic.edu, and type: Subscribe WomHlthAging-DD <YourFirstname> <YourLastname>

Women With Disabilities: HEALTH & AGING - (added 6/00)


Women with Disabilities Center   01/26/05

 The Health Resource Center for Women with Disabilities provides accessible, comprehensive health services  for women with disabilities throughout the Midwest and beyond. Through a creative partnership between the community of women with disabilities and rehabilitation service providers, they work to enhance the availability, accessibility and excellence of medical and psychosocial support for all women with disabilities nationwide. They are committed to the development and implementation of advocacy programs, clinical services, research, and resource networks that empower women with disabilities to practice self-determination in achieving emotional and physical well being. They are committed through the education of professionals to enhancing societal awareness of complex health and cultural issues facing women with disabilities.

Women With Physical Disabilities : Achieving and Maintaining Health and Well-Being, by Danuta M. Krotoski (Editor), Margaret A. Nosek (Editor), Margaret A. Turk , Paperback - 482 pages (May 1996), Paul H Brookes Pub Co.
This important new contribution to the field grew out of a 1994 conference sponsored by the National Center for Medical Rehabilitation Research, The Health of Women With Physical Disabilities: Setting a Research Agenda for the '90s.  Women With Physical Disabilities exposes a diverse subject that, until now, has received little to no attention.

The volume is unique in that it does not overmedicalize the issues.  Rather, it concentrates on the point of view of women with physical disabilities.  Many of its contributors are researchers, clinicians, and advocates with disabilities who are in charge of their lives and their bodies and who are active members of the research, health care, and disability communities.

The book targets multiple audiences: women with disabilities, health providers, researchers, and families and friends of women with disabilities.  Women with disabilities will identify with many of the described experiences, may find some new information and perspectives, and will have reinforced the need to move ahead with strong, loud, and continued advocacy for change.  Health providers should benefit by an expansion of their clinical knowledge and by becoming aware of some of the practical and quality-of-life issues of concern to women with disabilities.  Researchers will find new ways of analyzing the issues raised and new ideas for broadening the scope of their investigations to ensure that their research has practical applications.  There are many important recommendations in the book for new research priorities.

The 33 articles cover a range of topics, including an exposition on wellness in the context of disability, an overview of sociodemographics of women with disabilities, a look at the effect of combining disability status with cultural minority status, sexuality, reproduction, contraception, obstetrics, parenting, stress and its impact on physiology, approaches to stress management, bowel and bladder management, and exercise and nutrition programs to enhance physiological and psychological fitness.  A few of the articles are technical, but most are easy to read.

Carol J. Gill's "Becoming Visible: Personal Health Experiences of Women With Disabilities," eloquently explores experiences of oppression of women with disabilities.  She establishes the importance of women protesting their invisibility in the health system in terms of treatment options and in the research that guides those treatments.

The chapters on sexuality deal with what is known and not known about sexual response, reproductive health, pregnancy and delivery, as well as the psychosocial issues of sense of self, relationships, parenting, sexual orientation, abuse, gaining access to health care systems, and the politics surrounding the sexuality of women with disabilities.  Sandra Welner's article addresses several critical issues, rarely discussed: the negative effects of taking estrogen and progesterone for women with certain disabilities, the effect of disability on the detection and treatment of sexually transmitted diseases, and the experience of menopause.  Questions addressed are increasingly frequent topics of conversation among disabled women "boomers' " For example, as we age with disability and enter menopause, what will the effects be of many years of decreased weight bearing and limited participation in aerobic exercise?  Are we more vulnerable to significant osteoporosis?  What will the inevitable changes in tissue, strength, skin elasticity, reduced blood supply to the skin and soft tissue, and temperature sensitivity mean to us?

Carol Gill's noteworthy essay on dating and relationship issues articulates common and painful difficulties encountered by many with disabilities in establishing intimate relationships.  She explores issues around societal devaluation, physical and verbal abuse, family disapproval of relationships, and the practical and financial burdens placed on couples by misguided public policy.

Harilyn Rousso's "Sexuality and a Positive Sense of Self " shares some good and bad news regarding adolescent girls with disabilities.  The social scene is still difficult as girls continue to be excluded, rejected, and viewed as asexual based on the mythical standard of physical perfection.  The good news is that today's girls are tougher, more self-confident, and more creative in dealing with negative assumptions about their social potential.  These girls recognized, earlier than many of their older peers, that the source of oppression was outside themselves.  The problem is societal prejudices, not their bodies or their abilities.

Corbett O'Toole's "Disabled Lesbians: Challenging Monocultural Constructs" explores the barriers that disabled lesbians encounter both within the disabled women's community and the health care world.  The "Stress and Well-Being" section treats a subject one doesn't see written about a great deal: stress related to dealing with disability.  It explores the relationship between the physiological basis of the stress response and physical and emotional health and traditional approaches to stress, as well as new approaches to alleviating stress.

This book does a great service in recording in one volume a representative sampling of what is known, but more important what is not known.  Many of the articles leave the reader frustrated and wanting more data, information, and strategies.  This work sounds a blaring alarm: "pay attention to these areas and devote greater resources to investigating many of the issues critical to women with disabilities' " If this is to happen, researchers, providers, and women with disabilities must join forces and be the sounders of the alarm, also.

We must make our needs clearly, assertively, and repeatedly known in areas of essential services and resources, including education, prevention, research, and public policy change!  We need to advocate for attention and solutions so our concerns and our urgency for these services and resources are not only understood but become a priority for many. So what do we want?  We want these issues to get attention, and we want it now!

Reviewed by June Isaacson Kailes, Disability Policy Consultant, author of "Health, Wellness and Aging with Disability," and "Be a Savvy Health Care Consumer, Your Life May Depend on it!"

Review published in JOURNAL OF DISABILITY POLICY STUDIES
Volume 8, Numbers 1 & 2, 1997, pp 251 - 254

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