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Part 6
Part 6
Resources
Contents - Resources
• ACOG resources
• Federal and national resources
• Disability and women’s health
- general information
• Sexuality
• Tobacco and substance abuse
• Domestic violence and sexual
assault
• Women’s health examination
• Breast health
• Contraception
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Pregnancy and parenting
Activity and weight control
Adolescence
Aging and osteoporosis
Spinal cord injury
Other physical disabilities
Developmental disabilities
Blindness and low vision
Deafness and hard of hearing
Advocacy and etiquette
ADA and barrier removal
ACOG Materials
• Access to reproductive health care for women with disabilities. Chapter
in Special Issues for Women’s Health. ACOG 2005, pgs. 39-59
• Adolescent’s right to refuse long-term contraceptives. Chapter in: Health
Care for Adolescents. 2003 pg. 63-68
• Improving Access to Care for Women with Disabilities: Quick Reference
on CPT Coding. ACOG 2006. To access, email:
[email protected]
• Menstrual manipulation for adolescents with disabilities. ACOG
Committee Opinion No. 448, December 2009
• Obstetric Management of Patients with Spinal Cord Injuries ACOG
Committee Opinion No. 275, September 2002
• Sterilization of women, including those with mental disabilities. ACOG
Committee Opinion No. 371, July 2007
Disclaimer
The following are resources for consumers and
health care providers serving women with
disabilities. This listing does not imply
endorsement from ACOG. The quality or
availability of the materials or services
offered is not rated or ensured by ACOG.
Please consider increasing the font on some
slides if using these as handouts for patients.
Centers For Disease Control Resources
Women with
Disabilities
CDC, Women and Disability Section, in Disability and Health Division,
National Center on Birth Defect and Developmental Disabilities.
Includes information and data on disabilities and direct links to resources for
women with disabilities and health care providers.
Website: www.cdc.gov/ncbddd/women
National Women’s Health
Information Center
Office on Women’s Health, U.S. Dept. of Health and Human Services
Website includes data and information about and resources for women
with disabilities, their families and health care providers
Website: www.4women.gov/illness-disability
Web site has national resources and information by state on these topics:
Benefits
Civil Rights
Community Life
Education
Emergency Preparedness
Employment
Health
Housing
Technology
Transportation
Managed by the U.S. Dept. of Labor
/OD
Office on Disability
Office on Disability oversees the implementation and coordination of disability
programs, policies and special initiatives in the U.S. Dept. of Health and Human
Services pertaining to the health and health-related programs for the over 54 million
persons with disabilities in the United States.
Website includes a community resources finder.
Contact the HHS Office on Disability by post or email:
Email: [email protected]
Address:
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Room 637D
Washington, D.C. 20201
Federal and National Provider Resources
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American Academy of Physical Medicine and Rehabilitation –
A physician membership organization focusing on research and advocacy on public policy issues related to
disability.
Website: www.aapmr.org
Tel: 312-464-9700
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American Association on Health and Disability
Non-profit organization to advance health promotion and wellness interventions for people with
disabilities at federal, state and local levels through research education, advocacy and public awareness.
Publishes: Disabilities and Health Journal.
Website: www.aahd.us Tel: 301-545-6140
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Center for Research on Women with Disabilities (CROWD)
CROWD is housed at the Baylor College of Medicine. The Center focuses on issues related to health,
aging, civil rights, abuse, and independent living. Researchers develop and evaluate models for
intervention to address specific problems affecting women with disabilities.
Website: www.bcm.tmc.edu/crowd
Tel: 800-44-CROWD (800-442-7693)
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National Council on Disability
Independent federal agency that advises the government on issues that concern the independence of
people with disabilities.
Website: www.ncd.gov Tel: 202-272-2004 (voice) 202-272-2074 (TTY)
Federal and National Patient Resources
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Abilityinfo Reading Room
Lists book categories on major issues such as disabilities, accessibility, and family issues.
Website: .www.abilityinfo.com/books/#books
The Arc of the U.S.
Organization of and for people with developmental disabilities and their families. It provides advocacy at the legislative,
systems, and individual levels and resources for those in need, including older women. The Arc is organized by state chapters.
Website: www.thearc.org
Tel: 301-565-5470
Centers for Independent Living
Private, nonprofit corporations in the U.S. and Canada that provide advocacy, independent living skills training, information,
peer counseling and referral for individuals with disabilities
Website: www.ilru.org Tel: 713-520-0232 (voice) 713-520-5136 (TTY)
Disability Resources Monthly (DRM)
Guide to disability resources on the internet concerning legal rights, financial resources, assistive technology, education,
housing modifications, transportation and mobility services. Includes state by state resource information.
Website: www.disabilityresources.org
Tel/FAX: 631- 585-0290
Easter Seals
Resources and links for people with disabilities and families
Website: www.easter-seals.org Tel: 800-221-6827 (voice) 312-726-4258 (TTY)
National Council on Independent Living (NCIL)
Information and resources for people with disabilities and their families regarding independent living.
Website: http://www.ncil.org
Tel: 877-525-3400 (voice)
202-207-0340 (TTY)
National Women’s Health Information Center
Provides extensive resources for women with disabilities and providers.
Website: www.4women.gov/wwd/index.htm Tel: 800-994-9662 (voice) 888-220-5446 (TTY)
Social Security Disability Benefits
Site describes disability benefits, identifies who qualifies and how to apply
Website: www.ssa.gov/pubs/10029.html Tel. 800-772-1212 (voice) 800-325-0778 (TTY)
Disability and Women’s Health Care
General -Providers
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A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Medical
Conditions
Assists clinicians to improve knowledge and practice in providing care. Includes information on
access to general medical care, removing common barriers, comprehensive reproductive health
care, health promotion and wellness. North Carolina Office on Disability and Health and Villanova
University College of Nursing
Website: www.fpg.unc.edu/~ncodh/pdfs/providersguide.pdf
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Women Be Healthy – A Curriculum for Women with Mental Retardation and Other
Developmental Disabilities (for facilitators) Enables active participation in health care with a
primary emphasis in teaching about reproductive health and breast/cervical cancer screening.
North Carolina Office on Disability and Health – Pam Dickens [email protected]
Website: www.fpg.unc.edu/~ncodh/WomensHealth/week2.cfm Tel: 919-966-0871
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Women with Disabilities Education Program.
The web-based recorded program pursues two parallel tracts: a self-management curriculum for
patients and a training curriculum for health professionals.
Website: www.womenwithdisabilities.org
Disability and Women’s Health Care
General –Patients and Family
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A Health Handbook for Women with Disabilities. Maxwell J, Belser JW, David D. Hesperian
Books. 2007
The social stigma of disability and inadequate care are greater barriers to health than the
disabilities themselves. This book will help women with disabilities overcome these barriers
and improve their general health, self-esteem, and abilities to care for themselves and
participate in their communities
Website:
www.hesperian.org/mm5/merchant.mvc?Screen=PROD&Store_Code=HB&Product_Code=B1
50&Category_Code=ENG
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Orchid
This health and wellness magazine for women with disabilities focuses on achieving wellness,
not removing disability
Website: www.fpg.unc.edu/~ncodh/orchid
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Diverse City Press
Small Canadian publishing company provides educational materials for people with
disabilities and their care providers. Linked to the disability rights movement.
Website: www.diverse-city.com Tel: 877-246-5226
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Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Edited
by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk. Baltimore; Paul H. Brookes
Publishing Co., 1996,
Disability and Sexuality Resources
The Sexual Health Network is dedicated to providing easy access to sexuality information,
education, mutual support, counseling, therapy, healthcare, products and other resources for
people with disabilities, illness, or natural changes throughout the lifecycle and those who love
them or care for them.
Sexualhealth.com seeks to dispel myths about sexuality and provide the most accurate information about
sexuality and disability or illness possible. Disability and Illness topics:
Rediscovering Sex After Disability/Illness/Trauma
Developmental Disabilities
Multiple Sclerosis or MS
Heart Disease or Cardiac Conditions
Spinal Cord Injury
Traumatic Brain Injury
Cancer
Diabetes
Psychiatric Disabilities
Cerebral Palsy
Autoimmune Disorders
Autism Spectrum Disorders
Back Pain
Arthritis
HIV and AIDS
Spina Bifida / Myelomeningocele
Neuromuscular Disorders
Other Sexuality Resources - Providers
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American Association of Sex Educators, Counselors, and Therapists
Not-for-profit interdisciplinary professional organization with a shared interest in promoting understanding of
human sexuality and healthy sexual behavior. Publish journal: Contemporary Sexuality Website: www.aasect.org
Tel: 804-752-0026
Ethical Dilemmas: Sexuality and Developmental Disability. Eds. Griffiths DM, Richards D, Fedoroff P, Watson SL.
NADD Press, 2002.
International Society for the Study of Women’s Sexual Health
Promotes the exchange of information among scholars, researchers and practitioners about women’s sexual
function and sexual experience and provides the public with accurate information about women’s sexuality and
sexual health.
Website: www.isswsh.org
Tel: 847-517-7225
International Academy of Sex Research
Society promotes high standards of research and scholarship in the field of sexual behavior and the dissemination
of research. Journal: Archives of Sexual Behavior.
Website: www.iasr.org
Journal of Sexuality and Disabilities
Quarterly journal devoted to the psychological and medical aspects of sexuality in rehabilitation and community
settings.
Website: www.springerlink.com/content/104972
Society for the Scientific Study of Sexuality
A non-profit multidisciplinary professional membership organization dedicated to the advancement of knowledge
about sexuality
Website: www.sexscience.org Tel: 610-530-2483
Other Sexuality Resources - Patients
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Making Connections
VHS tape on dating by and for persons with disabilities to learn about appropriate social
behavior.
Choices, Inc. Educational Videos. See contact info below.
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Person to Person: A video program about the sexuality education of persons with
developmental disabilities. VHS or DVD and workbook. 1991 Choices, Inc Educational
Videos.
Website: www.ChoicesIncEducationalVideos.org. Tel: 202-364-5303
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Enabling romance: a guide to love, sex and relationships for the disabled (and the people
who care about them) Authors: Kroll K, Levy EL. . New York: Harmony Books, 1992.
Tobacco and Substance Abuse
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A Way Out: Women with disabilities and smoking.
A web-based workbook on smoking cessation. 1997
website: www.hc-sc.gc.ca/hl-vs/pubs/tobac-tobac/awayout-sortie/indes_e.html
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DAWN Canada (DisAbled Women’s Network, Canada, Tobacco and Substance Use/Misuse Bulletin
Website: www.dawncanada.net/trelief.htm
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Illicit Drug Use by Women with Disabilities. Authors: Li L and Ford JA. The American Journal of Drug and
Alcohol Abuse 1998;24:405-18
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Triple trouble: Alcohol Abuse by Women with Disabilities. Authors: Li L and Ford JA. Applied Behavioral
Science Review 1996;4:99-109.
Abuse & Assault Prevention Resources
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Basic Disability Awareness: Providing disability-friendly sexual and domestic violence services – training
manual. North Caroline Office on Disability and Health, 2006.
Website: www.fpg.unc.edu/~ncodh/WomensHealth/domesticviolence.cfm
Domestic Violence and Sexual Assault State Coalitions
Work with statewide systems and agencies on behalf of the needs and interests of victims of abuse/assault. A
directory of state coalitions is published by the U.S. Department of Justice, Office of Violence Against Women.
Website; www.ojp.usdoj.gov
Just Say Know!
Book explores the victimization of people with disabilities and helps reduce the risk of sexual assault. Diversity
Press
Website: www.Diverse-City.com
National Adult Protective Services Association (NAPSA)
Improves the quality and availability of protective services for disabled adults and elderly persons who are
abused, neglected, or exploited and are unable to protect their own interests.
Website: www.apsnetwork.org Tel: 217-523-4431
People with Disabilities and Sexual Assault – A series of facts sheets and informational brochures on a variety
of issues. Wisconsin Coalition Against Sexual Assault. 2003.
Website: www.wcasa.org/programs
People with Intellectual Disabilities and Sexual Violence
Information sheet in a Q&A format. From The ARC
Website: www.theArc.org Tel: (301) 565-3842
Sexual abuse of women with physical disabilities. Chapter in: D. M. Krotoski, M.A. Nosek and M.A.
Turk (Eds.) Women with physical disabilities: Achieving and maintaining health and well being. Baltimore: Paul
H. Brookes Publishers 1996.
Violence and Abuse in the Lives of People With Disabilities: The End of Silence Acceptance? By D. Sobsey
Paul H Brookes Publishers 1994
GYN Examination Resources
Provider Resources
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More Than Ramps : A Guide to Improving Health Care Quality and Access for People with Disabilities
Authors: Iezzoni LI and O’Day BL. Oxford Univ. Press 2006
Table Manners and Beyond: The gynecological exam for women with developmental disabilities and other functional
limitations.
Details need for GYN services and alternative positions for the pelvic examination, transfer methods and
adjustable examination tables
website: bhawd.org/sitefiles/TblMrs/cover.html Tel: 510-278-0106
Office Equipment
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Easy pivot patient lift - Rand-Scot, Inc.
website: www.randscot.com/easypivot Tel: 800- 467-7967
Hoyer type lifts – Medical Supplies and Equipment Company
website: www.medical-supplies-equipment-company.com
Tel: 877-706-4480
Perspectives of patients with disabilities on the accessibility of medical equipment: Examination talbes, imaging
equipment, medical chairs, and weight scales. (journal article) Authors: Story MF, Schwier E, Kailes JI. Disability and Health
Journal 2009;2:169-79
Accessible examination tables . Listing of providers and articles by Christopher and Dana Reeves Foundation. Accessed
10/20/09 at: http://www.christopherreeve.org/atf/cf/%7B3d83418f-b967-4c18-8adaadc2e5355071%7D/Accessible%20Exam%20Tables%207-08.PDF
Wheel chair scales - Affordable Scales
Website: www.affordablescales.com Tel: 800- 638-8582
Patient Resources
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Let’s Talk About Health: What every women should know.
Workbook on the GYN exam and more extensive information on the DVD and video tape for women with Developmental
Disabilities. Includes an explicit depiction of a physician performing a routine GYN exam.
The Arc of New Jersey
website: www.mainstreamingmedicalcare.org Tel: 732-246-2525 ext. 28
Welner Enabled (WE) continues Sandra
Welner, MD's legacy of advocacy for patients
with disabilities.
WE designs and builds products and devices
that enable people with disabilities and
others with special needs to access medical
diagnosis and treatment.
Website: www.welnerenabled.com
Tel: 800-430-9810
Breast Health Resources
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Breast Self-Examination, A New Approach
Approach especially modified for women with physical or sensory limitations.
Web site: www.bhawd.org
Tel: 510-204-4866 (voice) 510-204-4574 (TTY)
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Breast Self-Examination: A handbook for women with disabilities
From the Disabled Women’s Network, Ontario. Online handbook provides an overview on breast health issues
and reasons to take care of your breasts. It contains information about providing alternative services to women
with disabilities.
Website: http://dawn.thot.net/BSE_Handbook.html
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Women First: breast health for women with developmental disabilities
Guide in an easy-to-read format introduces self care, breast health, monthly self-exams and annual medical
visits. Contains a calendar for women to track monthly self-exams and annual visits
Wyoming Institute for Disabilities, 2004.
Website: http://wind.uwyo.edu/breasthealth/handbook.htm
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Mammacare
Has breast health and breast exam training for women who are blind or visually impaired
website: www.mammacare.com/
Tel: 800-626-2273
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Mammography Facility Survey for Disability Accessibility American Association on Health and Disability
Website:
www.aahd.us/site/static/pdfs/komen/CompendiumTOC2009.pdf?PHPSESSID=389dc2950df6e042be5b40886a358e3a
Contraception Resources
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Family Planning – A global handbook for providers. World Health Organization, Johns Hopkins Bloomberg
School of Public Health, United States Agency for International Development. 2007
Website: http://info.k4health.org/globalhandbook
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Medical Eligibility Criteria for Contraceptive Use, World Health Organization. Third ed.. Geneva: World
Health Organization; 2004.
Website: www.who.int/reproductive-health/publications/mec/index.htm
Update of the above Medical Eligibility Criteria for Contraceptive Use, World Health Organization 2008
Website: http://whqlibdoc.who.int/hq/2008/WHO_RHR_08.19_eng.pdf
For Patients and Family
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A Health Handbook for Women with Disabilities. Authors Maxwell J, Belser JW, David D. Pub. Hesparian,
Berkeley, CA. 2007.
Website: www.hesperian.org
Website: www.lookingglass.org
Tel:1-800-644-2666 (VOICE)
TTY: (510)848-1005
Through the Looking Glass (TLG) provides research,
training, and services for families in which a child, parent
or grandparent has a disability or medical issue. Our
mission is "To create, demonstrate and encourage nonpathological and empowering resources and model early
intervention services for families with disability issues in
parent or child which integrate expertise derived from
personal disability experience and disability culture.“
Pregnancy and Parenting
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The Disabled Women’s Guide to Pregnancy and Birth
The experiences of women with disabilities who have chosen to have children. Guidance for pregnancy planning
and suggestions for overcoming barriers. Author: Judith Rogers , 2006. Demos Medical Publishing, NY
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Multiplying Choices: Improving Access to Reproductive Health Services for Women with Disabilities
A 60 page guide for providers and patients on the delivery of reproductive health care and education.
website: www.berkeleypolicyassociates.com Tel: 510-465-7884 (voice) 510-465-4493 (TTY)
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The Only Parent in the Neighborhood: Mothering and Women with Disabilities
Discussion on parenting with a disability. Produced by DAWN, Canada
Website: www.dawncanada.net/ENG/ENGmother.htm
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Parenting: Tips from Parents (Who Happen to Have a Disability) on Raising Children
A collection of articles and information on having and raising children, written by parents with disabilities.
Author: Betty Garee, 1989. Accent Books/Cheever Publishing. PO Box 700, Bloomington, IL 61702.
Tel: (309)378-2961.
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Parents with Disabilities On Line. Information support and resources for parents with disabilities.
website: www.disbledparents.net
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Through the Looking Glass.
Research, training, and services for families in which a child, parent or grandparent has a disability or medical
issue. Services include adaptive equipment and peer support for parents with disabilities, including parents with
developmental disabilities.
Website: www.lookingglass.org Tel: 800-644-2666 (voice ) 800-804-1616 (TTY)
Physical Activity and Diet Resources
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Access to Recreation
Adaptive recreation equipment catalog.
Web site: www.accesstr.com. Tel: 800-634-4351
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Active Living by Design
National program of the Robert Wood Johnson Foundation establishes and evaluates innovative
approaches to increase physical activity through community design, public policies and
communications strategies.
website: www.activelivingbydesign.org Tel: 919- 843-2523
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Health Promoting Behaviors Checklist for Women with Disabilities – Diet Checklist
From CROWD - Center for Research on Women with Disabilities. Baylor University College of
Medicine
Website: www.bcm.edu/crowd/?pmid=2107
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National Center on Physical Activity and Disability (NCPAD)
Conducts research and disseminates information on physical activity and disability. Web site
houses a virtual library, interactive resources, on-line media presentations, activity fact sheets and
pertinent data.
Web site: www.ncpad.org Tel 800-900-8086 (voice and TTY)
Adolescent Resources
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Health and Medical Issues for Transition-age Adolescents with Disabilities and /or Health Care
Needs: A guide for teenagers and their families. Authors: Pomeroy M, Everson JM, Suillory JD,
Fass AL. Louisiana: Healthy and Ready to Work 2001. Accessed at
http://www.answers4families.org/family/youth-special-needs/healthcare-transition/health-andmedical-issues-transition-age-adolescents-disabilities-health-care-n
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Menstrual issues in a teenager with developmental delay. (journal article) Authors: Quint EH,
Breech L. Journal of Pediatrics and Adolescent Gynecology 2006;19:53-5.
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Perceptions and Expectations of Youth with Disabilities: A special topic report of findings from
the National Longitudinal Transition Study-2 (NLTS2) Authors Wagner M, Newman L, Cameto R,
Leving P, Marder C, SRI International. U.S. Department of Education 2007.
Accessed at: http://ies.ed.gov/ncser/pubs/20073006
Aging and Osteoporosis Resources
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Association on Aging with Developmental Disabilities
Develops, links and supports opportunities and services for older adults with developmental disabilities.
website: www.agingwithdd.org
Tel: 314-647-8100
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Healthy Aging – Adults with Intellectual Disabilities: Women’s Health and Related Issues. Authors:
Walsh PN, Heller T Schupf N, van Schrojenstein Lantman-de Valk H. Report for the Scientific Study of
Intellectual Disabilities, World Health Org. Geneva and Univ. of Wisconsin
Access at: www.who.int/mental_health/media/en/20.pdf
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Unanticipated Lives: Aging Families of Adults with Mental Retardation: The impact of lifelong caregiving.
Authors Seltzer MM, Larsonson BA, Makuch RL, Krauss MY, Robinson D. University of Wisconsin, Madison
and Brandies University, 2000 – white paper.
Overview available at : www.chas.uchicago.edu/documents/MD0506/AnUnanticipatedLive.pdf
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Wisconsin Aging and Disabilities Resource Center
Information for individuals, concerned families or professionals working with issues related to aging,
physical disabilities, developmental disabilities, mental health issues, or substance use disorders, can
receive information specifically tailored to each person's situation.
website: http://dhs.wisconsin.gov/LTCare/Generalinfo/RCs.htm
Dedicated to curing spinal cord injury
by funding innovative research, and
improving the quality of life for people
living with paralysis through grants,
information and advocacy.
Website:
www.christopherreeve.org
Tel: 1-800-225-0292
Spinal Cord Injury Resources
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American Spinal Cord Injury Association.
Promotes and establishes standards of excellence for all aspects of health care of individuals with spinal cord injury
from onset throughout life, educates providers and the public and fosters research.
website: www.asia-spinalinjury.org Tel: 404-355-9772
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National Spinal Cord Injury Association
Dedicated to improving the quality of life and opportunities of people with spinal cord injuries and diseases through
educational materials, information on community resources, access to support groups and affiliations with other
agencies serving people with disabilities. State chapters.
Website: www.spinalcord.org Tel: 800-962-9629
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Christopher and Dana Reeve Foundation
Dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people
living with paralysis through grants, information and advocacy.
Website: www.christopherreeve.org
Tel: 800-225-0292
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Spinal Cord Information Network
Website offers educational materials and information on services of the UAB Spinal Cord Injury Model System (see
below) along with links to national organizations, government agencies, commercial products, and educational
resources related to spinal cord injury.
Website: www.spinalcord.uab.edu
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National Spinal Cord Model Care Systems Model System Centers across the US work together to demonstrate
improved care, maintain a national database, participate in independent and collaborative research and provide
continuing education relating to spinal cord injury. Directed by Amie Jackson, MD University of Alabama, Spain
Rehabilitation Center.
Website: www.spinalcord.uab.edu/show.asp?durki=21392 Tel: 205-934-3283 (voice) 205-934-4642 (TDD)
Other Physical Disabilities Resources
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Spina Bifida Association
Provides information and publications for providers and public.
Website: www.spinabifidaassociation.org Tel: 800-621-3141
National Multiple Sclerosis Society
Works to expand knowledge of MS, enhance access to MS specialty medical care and empower people
with MS to live as independently as possible.
Website: www.nationalmssocieity.org Tel: 800-FIGHT-MS (344-4867)
Epilepsy Foundation
Works to ensure that people with seizures are able to participate in all life experiences; to improve how
people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.
Website: www.epilepsyfoundation.org
Tel: 800-332-1000
United Cerebral Palsy Association
Advances the independence, productivity and full citizenship of people with disabilities through an
affiliate network
Website: www.ucp.org/ Tel: 800-872-5827
Osteogenesis Imperfecta Foundation –
Website: www.oif.org
Tel: 800-981-2663
Post-Polio Health International
Website: www.post-polio.org Tel: 314-534-0475
Preservice Health Training Modules
designed to educate student and practicing
primary care providers about working with
individuals having intellectual disabilities.
http://womenshealth.phtmodules.net
The module is presented in virtual video scenarios involving a 26-year-old woman with an
intellectual disability scheduled for a women’s health exam. As you work through the case, you
make decisions about how to conduct the examination, as well as answer specific questions related
to developing a treatment plan. The program also includes downloadable tools and supplemental
information helpful for the provider in working with people with intellectual and developmental
disabilities
Human Development Institute, University of Kentucky http://www.hdi.uky.edu
All rights reserved.
Funded by the Kentucky Council on Developmental Disabilities.
Developmental Disabilities: Provider
Resources
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Ethical Dilemmas: Sexuality and Developmental Disability. Eds. Griffiths DM, Richards D, Fedoroff
P, Watson SL. NADD Press, 2002.
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Health Care Tool Kit For Individuals With Disabilities And The People Who Support Them.
Workbook designed for consumers with developmental disabilities and their caregivers to improve
direct communication between the healthcare provider and the person with a disability.
Wisconsin Council on Developmental Disabilities
Website: www.wcdd.org
Tel: 608-266-7826 TDD 608-266-6660
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Woman Be Healthy – A Curriculum for Women with Mental Retardation and Other
Developmental Disabilities (for facilitators) Enables active participation in health care with a
primary emphasis in teaching about reproductive health and breast/cervical cancer screening.
North Carolina Office on Disability and Health – Pam Dickens [email protected]
Website: www.fpg.unc.edu/~ncodh/WomensHealth/week2.cfm Tel: 919-966-0871
•
Let’s Talk About Health: What every women should know.
Workbook on the GYN exam and more extensive information on the DVD and video tape for
women with Developmental Disabilities. Includes an explicit depiction of a physician performing a
routine gyn exam. The ARC of New Jersey.
website: www.mainstreamingmedicalcare.org Tel: 732-246-2525 ext. 28
Developmental Disabilities: Patient
and Caregiver Resources
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The Arc of the U.S. Organization of and for people with developmental disabilities and their families. It
provides advocacy at the legislative, systems, and individual levels and resources for those in need,
including those for older women. The Arc is organized by state chapters.
Website: www.thearc.org
Tel: 301-565-5470
•
Association on Aging with Developmental Disabilities
Develops, links and supports opportunities and services for older adults with developmental disabilities.
website: www.agingwithdd.org
Tel: 314-647-8100
•
Healthy Ageing – Adults with Intellectual Disabilities: Women’s Health and Related Issues. Authors:
Walsh PN, , et al. Report on the Scientific Study of Intellectual Disabilities, Univ. of Wisconsin.
Access at: www.who.int/mental_health/media/en/20.pdf
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Person to Person: A video program about the sexuality education of persons with developmental
disabilities. VHS or DVD and workbook. 1991 Choices, Inc Educational Videos.
Website: www.ChoicesIncEducationalVideos.org. Tel: 202-364-5303
•
Unanticipated Lives: Aging Families of Adults with Mental Retardation: The impact of lifelong
caregiving. Authors Seltzer MM, Larsonson BA, Makuch RL, Krauss MY, Robinson D. University of
Wisconsin, Madison and Brandies University, 2000 – white paper.
Overview available at : www.chas.uchicago.edu/documents/MD0506/AnUnanticipatedLive.pdf
Blindness and Low Vision Resources
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Lighthouse International
Helps people who are blind or partially sighed remain safe, active, productive and independent through
rehabilitation, education research, prevention and advocacy. Also publishes information booklet “Making
Text Legible”
Website: www.lighthouse.org
Tel: 800-829-0500
American Council of the Blind
Serves as a representative national organization of blind people; elevating the social, economic and
cultural levels of blind people; improving educational and rehabilitation facilities and opportunities;
cooperating with the public and private institutions and organizations concerned with blind services;
encouraging and assisting all blind persons to develop their abilities and conducting a public education
program to promote greater understanding of blindness and the capabilities of blind people.
Website: www.acb.org Tel: 800 - 424-8666
American Foundation for the Blind:
Priorities include broadening access to technology; elevating the quality of information and tools for the
professionals who serve people with vision loss; and promoting independent and healthy living for people
with vision loss by providing them and their families with relevant and timely resources. Publishes an ADA
Checklist to assure access to health care services for the blind
Website: www.afb.org
Tel: 800-232-5463
Deafness and Hard of Hearing
Resources
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Communication with Deaf and Hard-of-Hearing People: A Guide For Medical Education. Author S.
Barnet. In Academic Medicine 2002;77:694-700 Includes a check list on communications guidelines.
The Culture of the Deaf (journal article) Author: McCreary Stebnicki JA and Coeling HV. Journal of
Transcultural Nursing 1999;10:350-7
Deaf Parenting UK – Website offers information and support for the deaf and hard of hearing and their
providers. website: www.deafparent.org.uk
Forest Books. British website devoted to the deaf and hard of hearing. Site includes: Pregnancy and Birth:
A Guide for Deaf Women. Author S. Lqbal 2004.
Website: www.forestbooks.com search pregnancy
Lifelinks – On-demand video interpreting and relay service. Offers live translation in sign language in
many languages for the hearing impaired with translators experienced in medical terminology.
Website: www.lifelinks.com
Tel: 1-888-SIGN-LANGUAGE (1-888-744-6526)
National Association of the Deaf
A U.S. civil rights organization of, by and for deaf and hard of hearing individuals to promote, protect, and
preserve the rights and quality of life of deaf and hard of hearing people.
Website: www.nad.org Tel: 301-587-1788 (voice) 301-587-1789 (TTY)
Your pregnancy and what to expect Pregnancy information DVD with Signing for the Hard of Hearing
through Harris Communications . Harris specializes in products for the deaf and hard of hearing.
Website: www.harriscomm.com click on consumer education.
Tel: 800 -825-6758 (Voice ) 800- 825-9187 (TTY)
Advocacy and Etiquette Resources
Resources for Providers
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Financing Health Care for Women with Disabilities . Authors Blanchard J, Hosek SD. White paper published by
Rand describes major financial issues affecting access to health care for women with disabilities and presents
strategies to address those issues.
Website: www.rand.org/publications/WP/WP139/index.html.
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Sensitivity Plus! Etiquette for Communicating with People with Disabilities.
The Center for Independence of the Disabled in New York, Inc.
Website: www.health.state.ny.us/nysdoh/prevent/target9.htm
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The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities.
Department of Health and Human Services, 2005
Website: www.surgeongeneral.gov
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Understanding the Health-Care Needs and Experiences of People with Disabilities: Findings from a 2003 Survey
Kaiser Family Foundation Report #6106. 2003
website: www.kff.org Tel: 202-347-5270
Resources for Patients and Families
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The Advocate’s Bookstore
Resources on specific disabilities, legal rights and responsibilities.
Website: www.wrightslaw.com/bkstore/bks_index.htm
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ART Disability Expression – International organization where people with disabilities can learn through,
participate in, and enjoy the arts.
Website: www.vsarts.org
Tel: 800-933-8721 (voice)
202-737-0645 (TDD)
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Disability Resources Monthly (DRM)
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Guide to disability resources on the internet concerning legal rights, financial resources, assistive technology,
education, housing modifications, transportation and mobility services. Includes state by state resource
information.
Website: www.disabilityresources.org
Creating Mobility and Independence for People with Disabilities
National AMBUCS™, Inc. is a non-profit service organization consisting of a
diverse group of men and women who are dedicated to creating mobility
and independence for people with disabilities. AMBUCS is organized
through state and local chapters. The AmBility program helps make homes
and businesses more physically accessible by offering modular ramp
alternatives
Website: www.ambucs.com
Tel: (800) 838-1845
ADA and Barrier Removal
ADA Information
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ADA Information Line
Website: www.usdoj.gov/crt/ada Tel: 800-514-0301(voice) 800-514-0383 (TTY).
ADA Tax Incentives information
website: www.ADA.gov/taxpack.pdf
US Architectural and Transportation Barriers Compliance Board (Access Board)
Provides information on the ADA Accessibility Guidelines, and information on the ADA Standards for Accessible
Design.
Website: www.access-board.gov
Tel: 800-872-2253 (voice) 800-993-2822 (TTY)
US Department of Justice, Americans with Disabilities Act (ADA)
Home page and Information Line. This is the main enforcement agency for the ADA.
Website: www.ada.gov
Tel: 800-514-0301 (voice) 800-514-0383 (TTY)
Architectural Barrier Removal:
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American Ramp Systems
Sells and rents affordable, easily accessible ramps.
Website: www.amramp.com Tel: 888-715-7598
The Center for Universal Design (CUD)
Information and resources on accessible building and design
Web site: www.design.ncsu.edu/cud
Tel: 800-647-6777 (info line)
Checklist for Readily Achievable Barrier Removal
An easy to use survey tool for individuals to identify barriers in their facilities.
Website: www.usdoj.gov/crt/ada/checkweb.htm
Trace Research and Development Center
Provides resources on Universal Design and Accessibility.
Website: www.trace.wisc.edu Tel: 608-262-6966 (voice) 800-263-5408 (TTY)
Volunteers for
Medical Engineering
Website: www.vmesolutions.org
Tel: 410/554-9134
VME is an organization of volunteers who aim, with invention and
engineering, to improve the independence and quality of life for
individuals living with disabilities.
How? Through the innovative efforts of volunteers with expertise in
medicine, engineering and technology. VME volunteers, who number
over 100, can create or modify devices to help clients perform daily
living activities, participate in recreation activities, communicate
through augmentative devices or control their environment.
VME services are provided for a small fee for completed devices.
Woman using standing wheelchair
developed by VME to do office filing
Thank You for participating in this program.
This is a work in progress and we hope to be updating it regularly.
Please contact ACOG for questions and comments:
[email protected] .org
Jade Richter, age 22. Recent
college graduate. Has spina bifida
Fly UP