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Health Bytes

INFORMATION FOR CONSUMERS, FAMILY AND HEALTH CARE PROVIDERS

The Communicating for Health Subcommittee of the Health Promotion Coordinating Committee has developed this list of resources about health information for people with disabilities, families and advocates.  This is one method of disseminating the information and other methods will be used as well.  We intend to update the list annually and look forward to your feedback about the usefulness of the resources to you and other resources you would suggest adding to the list.

Information on various topics including healthcare. In particular, Aging with Mental Retardation, Health Promotion, Future Planning/ Guardianships/ Trusts

• http://www.thearc.org/info-mr.html

CHILDREN WITH SPECIAL HEALTHCARE NEEDS

American Academy of Pediatrics - Populations with Unique Health Needs

• http://www.aap.org/healthtopics/populunique.cfm

American Academy on Pediatrics - lots of information regarding kids of every age plus transition. Type transition into the search box on the home page.

• http://hms.harvard.edu/hms/publications.asp

Boost language skills of children with Down syndrome. A new study by the Duke University Medical Center

• http://www.dukemednews.org/news/article.php?id=8184
• http://www3.interscience.wiley.com/cgi-bin/jissue/109627674

Children with Special Health Needs: Part I (Videotape)

• http://www.ems-c.org/cfusion/PublicationDetail.cfm?id=000856

Children with Special Health Needs: Part II (Videotape)

• http://www.ems-c.org/cfusion/PublicationDetail.cfm?id=000857

Down Syndrome

• http://www.nas.com/downsyn

FamilyDoctor.org from the American Academy of Family Physicians Conditions from A to Z

• http://familydoctor.org

Family Village Community Health Care Center

• http://www.familyvillage.wisc.edu/hospital.htm

Family Village Health and Disability Related Reference

• http://www.familyvillage.wisc.edu/general/ref.html

Genetic Testing, Screening, and Counseling—an Overview

• http://thearc.org/pdf/gbr03.pdf

Health, financial, insurance and developmental topics.

• http://www.downsyndrome.org

Information about Health and Wellness on the United Cerebral Palsy website.

• http://www.ucp.org/ucp_channel.cfm/1/16

National Center on Birth Defects and Developmental Disabilities

• http://www.cdc.gov/ncbddd/default.htm

NICHCY A-Z Topics

• http://www.nichcy.org/resources/default.asp

Spina bifida including secondary conditions and new developments

• http://www.chesapeakespinabifida.org/facts.htm

EMERGENCIES

American Association of Poison Control Centers

• http://www.1-800-222-1222.info/poisonHelp.asp

American College of Emergency Physicians Health Information

• http://www.acep.org/1,3,0.html

American Red Cross - Health and Safety Services

• http://www.redcross.org/services/hss/

Emergency Care Plans for Children with Special Health Care Needs

• http://www.ems-c.org/downloads/pdf/CSHCNfactsheet.pdf

Recommendations for Emergency Care Plans for Children with Special Health Care Needs

• http://ems-c.org/downloads/pdf/933/nachri.pdf

FUTURE PLANNING

Health, financial, insurance and developmental topics.

• http://www.downsyndrome.org

Information on various topics including healthcare. In particular, Aging with Mental Retardation, Health Promotion, Future Planning/ Guardianships/ Trusts.

• http://www.thearc.org/info-mr.html

People with disabilities or long-term illnesses live in their homes and participate fully in community life. U.S. Health and Human Services announced $31 million in grants to 31 states.

• http://www.hhs.gov/news/press/2004pres/20041005a.html

GENERAL HEALTH

Agency for Healthcare Research and Quality – Wellness & Health Promotion Information

• www.ahrq.gov

Consumer Health: Disabilities

• http://www.medweb.emory.edu/MedWeb

Family Resource Guide

• http://www.thearc.org/familyguide/generic.doc

Harvard health special publications and other information for the general public

• http://hms.harvard.edu/hms/publications.asp

Healthy People 2010

• www.healthypeople.gov

Information about medications for consumers and caregivers

• http://www.project-med.org

Information on various topics including healthcare. In particular, Aging with Mental Retardation, Health Promotion, Future Planning/ Guardianships/ Trusts.

• http://www.thearc.org/info-mr.html

National Center for Birth Defects and Developmental Disabilities - Disability and Health Information

• www.cdc.gov/ncbddd/dh

North Carolina Office on Disability & Health

• www.fpg.unc.edu/~ncodh

PCHC was created in 1989 by the Philadelphia Office of Mental Retardation Services (MRS) to address the historic problems experienced by people with intellectual disabilities in readily accessing quality medical, dental, and behavioral health care.

• http://PCHC.ORG

The Arc Family Resource Guide, Nebraska

• http://www.thearc.org/familyguide/nebraska.doc

MEDICINE

Doctors, Disabilities, and the Family

• http://www.nichcy.org/nichcyReport.asp?id=6656

Family Village Community Health Care Center

• http://www.familyvillage.wisc.edu/hospital.htm

Injury Prevention for Children with Special Health Care Needs (Resource Guide)

• http://www.ems-c.org/downloads/doc/ipcshcn.doc

MENTAL HEALTH

American Academy of Child and Adolescent Psychiatry

• http://aacap.org/publications/factsfam/index.htm

Mental Health and Environmental Exposures

• http://iceh.org/pdfs/LDDI/MentalHealthFactSheet.pdf

Research Unit on Pediatric Psychopharmacology

• http://www.psychmed.osu.edu

POSITION STATEMENTS/BEST PRACTICE

Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation

• http://www.thearc.org/misc/SurgeonGeneralsReport.pdf

Consumer-Directed Healthcare: How Well Does It Work?

• http://www.ncd.gov/newsroom/publications/2004/consumerdirected.htm

Environmental toxicants and persons with developmental disabilities

• http://www.aamr.org/ToxinsandMentalRetardation/pdf/ToxicChemical&MRReport_final_color.pdf

Hearing Changes in Aging People with Mental Retardation

• http://thearc.org/faqs/hearingaging.html

Position Statements – Health Care, Arc and AAMR

• http://www.thearc.org/posits/healthcarepos.htm

Voting access for Americans with disabilities, according to a poll by the National Organization on Disability/ Harris Interactive.

• http://www.nod.org

RESOURCES/MISCELLANEOUS INFORMATION RE: DISABILITIES

Kennedy Krieger Institute Resource Network. This site has national and local resources

• http://www.resourcenetworkatkki.org/index.html

Recall of Oral-B CrossAction Power and PowerMAX toothbrushes and refills, used in brushing of teeth of persons with special needs due toreported incidents of coming apart in the mouth while brushing

• http://www.oralb.com/home.asp for more information or call 1-800-496-6557 for further questions

School health information via Aetna - Harvard Medical

• http://www.intelihealth.com/IH/ihtIH/WSIHW000/408/408.html

FEMALE AND MALE SEXUALITY AND HUMAN GENDER ISSUE

Breast Health Awareness for Women with Disabilities (bhawd) and information about gynecological examinations

• http://www.bhawd.org/sitefiles/index2.html and http://www.bhawd.org/sitefiles/TblMrs/cover.html

Information about human sexuality, including people with disability and chronic conditions.

• http://www.sexualhealth.com/channel.php?Action=view_sub&channel=3&topic=74

Life Horizons I: The Physiological and Emotional Aspects of Being Male and Female
Life Horizons II: The Moral, Social, and Legal Aspects of Sexuality
Other Resources also listed on this page

• http://www.stanfield.com/sexed.html#A

Women:Stay Healthy at Any Age-Checklist for Your Next Checkup. AHRQ Publication No. APPIP03-0008, January 2004. Agency for Healthcare Research and Quality, Rockville, MD

• http://www.ahrq.gov/ppip/healthywom.htm

National Women’s Health Information Center

• www.4woman.gov

Health Access for Women with Disabilities – New Jersey Developmental Disabilities Council

• www.njddc.org/healthaccess.htm

Center for Research on Women with Disabilities

• www.bcm.tmc.edu/crowd/

TRANSITION

Information on various topics including healthcare. In particular, Aging with Mental Retardation, Health Promotion, Future Planning/ Guardianships/ Trusts.

• http://www.thearc.org/info-mr.html

Promising Practices in Health Care Transition Project at the Institute for Child Health Policy at the University of Florida

• http://hctransitions.ichp.edu

WORK

Job settings: Fact sheet dispels myths about people with intellectual disabilities.

• http://www.eeoc.gov/facts/intellectual_disabilities.html

ARTICLES/BOOKS:

Brown A. & Murphy L. (1999) Aging with Developmental Disabilities: Women’s Health Issues. The ARC & RRTC on Aging with Mental Retardation Fact Sheets. Institute on Disability and Human Development. University of Illinois at Chicago.

• www.thearc.org/faqs/whealth.html

Brown, E., & Jemmott, L. (2002) HIV Prevention Among People with Developmental Disabilities. Journal of Psychosocial Nursing. 40, 14-21.

Dotson, L., Stinson, J. & Christian, L. (2003) People Tell Me I Can’t Have Sex: Women with Disabilities Share Their Personal Perspectives on Health Care, Sexuality, and Reproductive Rights. Women & Therapy. 26, 195-209.

Heller & Walsh. (2002) Health of Women with Intellectual Disabilities. Blackwell Scientific Publications, Oxford.

Iezzoni L. et al. (2000) Mobility Impairments and Use of Screening and Preventive Services. American Journal of Public Health. 90, 955-961.

Lunsky, Y., Straiko, A. & Armstrong, S.C. (2002). Women Be Healthy: A Curriculum for Women with Mental Retardation/Developmental Disabilities.[Revised by S.M. Havercamp, C. Kluttz-Hile, & P. Dickens]. Chapel Hill, NC.

Nehring, W. M. (Ed.). (2005). Core curriculum for specializing in intellectual and developmental disabilities: A resource for nurses and other health professionals. Boston: Jones and Bartlett.

Nehring, W. M., Roth, S. P., Natvig, D., Betz, C. L., Savage, T., & Krajicek, M. (2004). Intellectual & developmental disabilities nursing: Scope & standards of practice. Washington, DC: American Nurses Association and the American Association on Mental Retardation

North Carolina Office on Disability and Health www.fpg.unc.edu/~ncodh

Nosek M. & Gill C. (1998) Use of Cervical and Breast Cancer Screening Among Women With and Without Functional Limitations-United States, 1994-1995. Morbidity and Mortality Weekly Review. 47, 853-856.

Orchid – Health and Wellness Magazine for Women with Disabilities

Reproductive Health Care for Women with Disabilities – A guide to inform women with disabilities about reproductive healthcare.

United States Department of Health and Human Services (HHS). Healthy People 2010:Disability and Secondary Conditions, Chapter 6. Washington, DC:HHS, Public Health Service (PHS).

Welner S. & Haseltine F. (2003) Welner’s Guide to the Care of Women with Disabilities. Lippincott Williams & Wilkins, Pennsylvania.