Carolyn Martin, mls, ahip consumer Health Coordinator

Carolyn Martin, MLS, AHIP

Consumer Health Coordinator

National Network of Libraries of Medicine/Pacific Northwest Region

University of Washington Health Sciences Library, Box 357155

Seattle, WA 98195

206-221-3449 /

[e-mail]

NN/LM PNR website https://nnlm.gov/pnr/

Resource List for Locating Information on Developmental Disabilities

Basic Information

CDC Developmental Disabilities fact page

http://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
CDC statistics

http://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html

Evaluating Websites

NN/LM Evaluating Health Websites

https://nnlm.gov/outreach/consumer/evalsite.html

Information Resources

MedlinePlus

https://www.nlm.nih.gov/medlineplus/
Genetics Home Reference

https://ghr.nlm.nih.gov/

Eunice Kennedy Shriver National Institute of Child Health & Human Development

https://www.nichd.nih.gov/Pages/index.aspx

National Institute of Neurological Disorders and Stroke

http://www.ninds.nih.gov/

National Institute of Arthritis and Musculoskeletal and Skin Diseases

http://www.niams.nih.gov/

KidsHealth.org

http://kidshealth.org/

Administration for Community Living

http://acl.gov/

Disability.gov

https://www.disability.gov/

CDC Developmental Disabilities

http://www.cdc.gov/ncbddd/developmentaldisabilities/index.html

Drug information

MedlinePlus https://www.nlm.nih.gov/medlineplus/druginformation.html

Drug Information Portal http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp

National Center for Complementary and Integrative Health https://nccih.nih.gov/

NLM drug resources list https://www.nlm.nih.gov/learn-about-drugs.html

Multiple languages

MedlinePlus by language https://www.nlm.nih.gov/medlineplus/languages/languages.html

MedlinePlus by health topic https://www.nlm.nih.gov/medlineplus/languages/all_healthtopics.html

MedlinePlus in Spanish https://www.nlm.nih.gov/medlineplus/spanish/

Health Reach https://healthreach.nlm.nih.gov/

KidsHealth.org (Spanish +audio) http://kidshealth.org/

National Institute of Neurological Disorders and Stroke http://espanol.ninds.nih.gov/

Eunice Kennedy Shriver National Institute of Child Health & Human Development https://www.nichd.nih.gov/espanol/Pages/default.aspx

National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov/Portal_en_espanol/default.asp

EthnoMed https://ethnomed.org/

SPIRAL http://spiral.tufts.edu/

Health Information Translations https://www.healthinfotranslations.org/

Utah Office of Health Disparities Multilingual Library http://health.utah.gov/disparities/multilinguallibrary/

Healthy Roads Media https://www.store.healthyroadsmedia.org/

Concerns and Issues
Medicaid

Waiver https://www.medicaid.gov/medicaid-chip-program-information/medicaid-and-chip-program-information.html

Individuals with disabilities https://www.medicaid.gov/medicaid-chip-program-information/by-population/people-with-disabilities/individuals-with-disabilities.html
Websites with information concerning caregiver, financial, educational and other topics of concern

American Academy of Developmental Medicine and Dentistry https://aadmd.org/

American Academy of Pediatrics Medical Home information https://medicalhomeinfo.aap.org/Pages/default.aspx

American Association on Intellectual and Developmental Disabilities http://aaidd.org/home

Association for Persons with Developmental Disabilities http://thenadd.org/

Association of University Centers on Disabilities http://www.aucd.org/template/index.cfm

Caregiver Action Network http://caregiveraction.org/

Center for Parent Information and Resources http://www.parentcenterhub.org/

Family Caregiver Alliance https://www.caregiver.org/

Family Voices http://www.familyvoices.org/

Healthcare.gov https://www.healthcare.gov/people-with-disabilities/ssi-and-medicaid/

Health Matters Program http://healthmattersprogram.org/

Health Care System Foundation http://www.hschealth.org/foundation/publications

Insure Kids Now https://www.insurekidsnow.gov/

National Association of Councils on Developmental Disabilities http://www.nacdd.org/

National Guardianship Association http://www.guardianship.org/

National Initiative for Children’s Healthcare Quality (NICHQ) http://www.nichq.org/how%20we%20improve/resources/powerful%20partnerships

National Institute of Dental and Craniofacial Research http://www.nidcr.nih.gov/

National Respite Network and Resource Center http://archrespite.org/

NLM 4 Caregivers https://sis.nlm.nih.gov/outreach/caregivers.html

NLM 4 Caregivers handout https://sis.nlm.nih.gov/outreach/caregiversflyer.pdf

Patient-Centered Primary Care Collaborative (Medical Home Model) https://www.pcpcc.org/about/medical-home

Rehabilitation Research and Training Center on Developmental Disabilities and Health http://rrtcadd.org/

Project Search http://www.projectsearch.us/

Sibling Support Project https://www.siblingsupport.org/

Special Needs Alliance http://www.specialneedsalliance.org/

Support for Families (though for San Francisco are includes other helpful information) https://www.supportforfamilies.org/

The Arc http://www.thearc.org/

Think College http://www.thinkcollege.net/

Transition Coalition http://transitioncoalition.org/

U.S. Department of Education for adults http://www2.ed.gov/about/offices/list/ovae/pi/AdultEd/disability.html

U.S. Department of Education http://idea.ed.gov/

ALA division:

Association of Specialized and Cooperative Library Agencies http://www.ala.org/ascla/

AccessAbility Academy http://www.ala.org/ascla/accessibility-academy
British Columbia Library Association:

Accessibility Interest Group (AIG) https://bclaconnect.ca/aig/

Disability Awareness Toolkit https://bclaconnect.ca/aig/accessibility-interest-group-resources-documents/