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

• 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: underservedwomen@acog.org

• 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.

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

Centers For Disease Control Resources

                                                                                

 

Office on Women’s Health, U.S. Dept. of Health and Human ServicesWebsite includes data and information about and resources for women with disabilities, their families and health care providersWebsite: www.4women.gov/illness-disability

National Women’s Health Information Center

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

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: ODInfo@hhs.govAddress:U.S. Department of Health & Human Services200 Independence Avenue, S.W.Room 637DWashington, D.C. 20201

Office on Disability

/OD

Federal and National Provider Resources

• 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

• 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

• 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)

• National Council on DisabilityIndependent 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• 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 LivingPrivate, nonprofit corporations in the U.S. and Canada that provide advocacy, independent living skills training, information, peer counseling and referral for individuals with disabilitiesWebsite: 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 SealsResources and links for people with disabilities and familiesWebsite: 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 CenterProvides 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 BenefitsSite describes disability benefits, identifies who qualifies and how to applyWebsite: www.ssa.gov/pubs/10029.html Tel. 800-772-1212 (voice) 800-325-0778 (TTY)

Disability and Women’s Health Care General -Providers

• A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Medical ConditionsAssists 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 NursingWebsite: www.fpg.unc.edu/~ncodh/pdfs/providersguide.pdf

• 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 dickens@mail.fpg.unc.eduWebsite: www.fpg.unc.edu/~ncodh/WomensHealth/week2.cfm Tel: 919-966-0871

• 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

• A Health Handbook for Women with Disabilities. Maxwell J, Belser JW, David D. Hesperian Books. 2007The 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 communitiesWebsite: www.hesperian.org/mm5/merchant.mvc?Screen=PROD&Store_Code=HB&Product_Code=B150&Category_Code=ENG

• Orchid This health and wellness magazine for women with disabilities focuses on achieving wellness,

not removing disability Website: www.fpg.unc.edu/~ncodh/orchid

• 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

• 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

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/TraumaDevelopmental DisabilitiesMultiple Sclerosis or MSHeart Disease or Cardiac ConditionsSpinal Cord InjuryTraumatic Brain InjuryCancerDiabetesPsychiatric DisabilitiesCerebral PalsyAutoimmune DisordersAutism Spectrum DisordersBack PainArthritisHIV and AIDSSpina Bifida / MyelomeningoceleNeuromuscular Disorders

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.

Other Sexuality Resources - Providers• 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 DisabilitiesQuarterly 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

• Making ConnectionsVHS tape on dating by and for persons with disabilities to learn about appropriate social behavior.Choices, Inc. Educational Videos. See contact info below.

• 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

• 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• A Way Out: Women with disabilities and smoking.

A web-based workbook on smoking cessation. 1997website: www.hc-sc.gc.ca/hl-vs/pubs/tobac-tobac/awayout-sortie/indes_e.html

• DAWN Canada (DisAbled Women’s Network, Canada, Tobacco and Substance Use/Misuse BulletinWebsite: www.dawncanada.net/trelief.htm

• 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

• 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• 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 CoalitionsWork 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 ResourcesProvider Resources• 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 tableswebsite: bhawd.org/sitefiles/TblMrs/cover.html Tel: 510-278-0106

Office Equipment• 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-b967-4c18-8ada-adc2e5355071%7D/Accessible%20Exam%20Tables%207-08.PDF

• Wheel chair scales - Affordable ScalesWebsite: www.affordablescales.com Tel: 800- 638-8582    

Patient Resources• 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 Jerseywebsite: 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.comTel: 800-430-9810

Breast Health Resources• 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)

• Breast Self-Examination: A handbook for women with disabilitiesFrom 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

• Women First: breast health for women with developmental disabilitiesGuide 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 visitsWyoming Institute for Disabilities, 2004.Website: http://wind.uwyo.edu/breasthealth/handbook.htm

• MammacareHas breast health and breast exam training for women who are blind or visually impairedwebsite: www.mammacare.com/ Tel: 800-626-2273

• Mammography Facility Survey for Disability Accessibility American Association on Health and DisabilityWebsite: www.aahd.us/site/static/pdfs/komen/CompendiumTOC2009.pdf?PHPSESSID=389dc2950df6e042be5b40886a358e3a

Contraception Resources

• Family Planning – A global handbook for providers. World Health Organization, Johns Hopkins Bloomberg School of Public Health, United States Agency for International Development. 2007Website: http://info.k4health.org/globalhandbook

• 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.htmUpdate of the above Medical Eligibility Criteria for Contraceptive Use, World Health Organization 2008Website: http://whqlibdoc.who.int/hq/2008/WHO_RHR_08.19_eng.pdf

For Patients and Family A Health Handbook for Women with Disabilities. Authors Maxwell J, Belser JW, David D. Pub. Hesparian,

Berkeley, CA. 2007.Website: www.hesperian.org

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 non-pathological 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.“

Website: www.lookingglass.orgTel:1-800-644-2666 (VOICE)TTY: (510)848-1005

Pregnancy and Parenting• 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

• Multiplying Choices: Improving Access to Reproductive Health Services for Women with DisabilitiesA 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)

• The Only Parent in the Neighborhood: Mothering and Women with DisabilitiesDiscussion on parenting with a disability. Produced by DAWN, CanadaWebsite: www.dawncanada.net/ENG/ENGmother.htm

• Parenting: Tips from Parents (Who Happen to Have a Disability) on Raising ChildrenA 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.

• Parents with Disabilities On Line. Information support and resources for parents with disabilities.website: www.disbledparents.net

• 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• Access to Recreation

Adaptive recreation equipment catalog. Web site: www.accesstr.com. Tel: 800-634-4351

• Active Living by DesignNational 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

• Health Promoting Behaviors Checklist for Women with Disabilities – Diet Checklist From CROWD - Center for Research on Women with Disabilities. Baylor University College of MedicineWebsite: www.bcm.edu/crowd/?pmid=2107

• 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• 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-and-medical-issues-transition-age-adolescents-disabilities-health-care-n

• 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.

• 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• 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 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

• 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

• 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• 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

• National Spinal Cord Injury AssociationDedicated 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

• 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

• Spinal Cord Information NetworkWebsite 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

• 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• Spina Bifida Association

Provides information and publications for providers and public. Website: www.spinabifidaassociation.org Tel: 800-621-3141

• National Multiple Sclerosis SocietyWorks 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 FoundationWorks 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 networkWebsite: www.ucp.org/ Tel: 800-872-5827

• Osteogenesis Imperfecta Foundation –Website: www.oif.org Tel: 800-981-2663

• Post-Polio Health InternationalWebsite: www.post-polio.org Tel: 314-534-0475

Human Development Institute, University of Kentucky All rights reserved. Funded by the Kentucky Council on Developmental Disabilities.

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

Preservice Health Training Modules designed to educate student and practicing primary care providers about working with individuals having intellectual disabilities.

http://womenshealth.phtmodules.net

http://www.hdi.uky.edu

Developmental Disabilities: Provider Resources

• Ethical Dilemmas: Sexuality and Developmental Disability. Eds. Griffiths DM, Richards D, Fedoroff P, Watson SL. NADD Press, 2002.

• 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

• 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 dickens@mail.fpg.unc.eduWebsite: 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

• 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 DisabilitiesDevelops, 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

• 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• 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 blindWebsite: www.afb.org Tel: 800-232-5463

Deafness and Hard of Hearing Resources

• 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 ResourcesResources for Providers• 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.

• 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

• The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Department of Health and Human Services, 2005Website: www.surgeongeneral.gov

• Understanding the Health-Care Needs and Experiences of People with Disabilities: Findings from a 2003 SurveyKaiser Family Foundation Report #6106. 2003website: www.kff.org Tel: 202-347-5270

Resources for Patients and Families• The Advocate’s Bookstore

Resources on specific disabilities, legal rights and responsibilities. Website: www.wrightslaw.com/bkstore/bks_index.htm

• 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)

• 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

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

Creating Mobility and Independence for People with Disabilities

ADA and Barrier RemovalADA Information• 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:• 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 designWeb 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 CenterProvides resources on Universal Design and Accessibility.Website: www.trace.wisc.edu Tel: 608-262-6966 (voice) 800-263-5408 (TTY)

Volunteers for Medical Engineering

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.

Website: www.vmesolutions.org Tel: 410/554-9134

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: jmahoney@ACOG .org

Jade Richter, age 22. Recent college graduate. Has spina bifida