DDNA Resources


Resource Directory

 




AHCA – ID/DD Digest

AHCA – ID/DD Digest (log-in required) https://www.ahcancal.org/News/publication/Pages/DD-Digest.aspx

APA/Recreation

Adaptive Sports Center A non-profit organization that provides year-round recreation activities for people with disabilities and their families. http://www.adaptivesports.org/

Blaze Sports A 501(c)(3) non-profit organization that advances the lives of youth and adults with physical disabilities through sports and healthy lifestyles. http://www.blazesports.org/

Inclusive Fitness Coalition http://incfit.org/

International Disabled Self-Defense Association http://www.defenseability.com/

The National Center on Healthy, Physical Activity and Disability (NCHPAD) http://www.nchpad.org/

National Ability Center http://www.discovernac.org/

PALAESTRA Forum of sport, physical education, and recreation for those with disabilities. http://www.palaestra.com/

Wilderness Inquiry A non-profit organization that helps people from all walks of life to personally experience the natural world. https://www.wildernessinquiry.org/

Yoga for the Special Child http://www.specialyoga.com/

Abuse and Neglect

Abuse and Neglect of Adults with Developmental Disabilities Disability Rights California (PDF) http://www.disabilityrightsca.org/pubs/701901.pdf

Beyond Abuse: Treatment Approaches for People with Disabilities http://www.broadreachtraining.com/advocacy/artbeyabu.htm

Child Abuse and Children with Disabilities New York State Office of Children and Family Services http://disabilityabuse.org/

Child Abuse and Neglect User Manual Series Child Welfare Information Gateway https://www.childwelfare.gov/pubs/usermanuals/

Confronting the Sexual Abuse of Women with Disabilities (PDF) http://vawnet.org/sites/default/files/materials/files/2016-09/AR_SVDisability.pdf

Disability and Abuse Project http://www.disability-abuse.com/

Disability Services ASAP (A Safety Awareness Program) http://www.safeaustin.org/safeprograms/disability-services-asap/

Family Violence and People with Intellectual Disabilities (PDF) http://publications.gc.ca/collections/Collection/H72-22-22-2002E.pdf

Forensic Interviews of Children Who Have Developmental Disabilities Part 1 (PDF) http://www.ndaa.org/pdf/update_vol_19_number_1_2006.pdf Part 2 (PDF) http://www.ndaa.org/pdf/update_vol_19_number_2_2006.pdf

Gifts From Within A non-profit organization dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals. http://www.giftfromwithin.org/

Homophobia as Violence https://ici.umn.edu/products/impact/133/over8.html

Invisible Victims: Violence Against Persons with Developmental Disabilities (abstract) https://www.ncjrs.gov/App/abstractdb/AbstractDBDetails.aspx?id=189416

More Common Than We Think: Recognizing and Responding to Signs of Violence http://www.broadreachtraining.com/advocacy/artmorcom.htm

People with Intellectual Disabilities and Sexual Offenses (PDF) http://www.thearc.org/document.doc?id=3658

People with Intellectual Disabilities and Sexual Violence (PDF) http://www.thearc.org/document.doc?id=3657

Power and Control Wheel: A Tool for Recognizing Abusive Behavior https://ici.umn.edu/products/impact/133/prof7.html

Preventing Abuse and Neglect of Children with Disabilities https://lifecenter.ric.org/index.php?tray=content&tid=top3&cid=471

The Risk and Prevention of Maltreatment of Children with Disabilities https://www.childwelfare.gov/pubPDFs/focus.pdf

Understanding Caregiver Abuse as Domestic Violence https://ici.umn.edu/products/impact/133/prof1.html

“You’re My Pretty Bird in a Cage”: Disability, Domestic Violence, and Survival https://ici.umn.edu/products/impact/133/over1.html

 

Academic Research

Autism Spectrum Institute – Illinois State University https://education.illinoisstate.edu/asi/

Center for Excellence in Autism Research (CeFar) – University of Pittsburgh http://www.wpic.pitt.edu/research/CeFAR/

Center for Autism Research https://www.centerforautismresearch.org/

Center for Autism and Related Disabilities – SUNY University at Albany http://www.albany.edu/autism/

Center for Human Development Research – University of Texas Medical School at Houston https://med.uth.edu/psychiatry/research/chdr/

Center for Human Genetics – Duke University https://medicine.duke.edu/topics/center-human-genetics

Coleman Institute for Cognitive Disabilities – University of Colorado https://www.colemaninstitute.org/

Florida Mental Health Institute – University of South Florida http://www.usf.edu/cbcs/about-cbcs/fmhi.aspx

Koegel Autism Center – UC Santa Barbara https://education.ucsb.edu/autism

Medical Investigation of Neurodevelopmental Disorders (MIND) Institute – UC Davis http://www.ucdmc.ucdavis.edu/mindinstitute/

National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) https://acl.gov/programs/nidilrr/

Society for Disability Studies (SDS) http://disstudies.org/

Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) http://vkc.mc.vanderbilt.edu/vkc/triad/

Trisomy 18 Foundation http://www.trisomy18.org/

University of Florida Department of Pediatrics, Division of Genetics and Metabolism Links to the newsletter archive containing information on macrocephaly disorder, tuberous sclerosis, Williams syndrome, neural tube defects, and more. https://www.peds.ufl.edu/divisions/genetics/newsletters.htm

Yale Autism Program http://medicine.yale.edu/childstudy/autism/

Yale Developmental Disabilities Clinic http://childstudycenter.yale.edu/autism/clinical_services/yaledevelopmentaldisabilitiesclinic.aspx

Accessible Design

A House for All Children http://ahouseforallchildren.njit.edu/

Americans with Disabilities Act (ADA) Standards for Accessible Design (PDF) https://www.ada.gov/regs2010/2010ADAStandards/2010ADAStandards.pdf

Accessible Design for the Blind http://accessforblind.org/

Accessible Pedestrian Signals http://www.apsguide.org/

Boundless Playgrounds http://www.righttoplay.org/boundless.htm

Remote Infrared Signage Development to Address Current and Emerging Access Problems for Blind Individuals Published Dec 1999 (PDF) http://accessforblind.org/publications/Smith-Kettlewell/Remote%20Infrared%20Signage%20Development.pdf

Smart Way of Living for People with Dementia Published Jan 2007 https://www.sciencedaily.com/releases/2007/01/070124104419.htm

United States Access Board Guidelines and Standards https://www.access-board.gov/guidelines-and-standards

Autism Spectrum

A Case for Neurobiological Work-up in Autism http://www.riverbendds.org/index.htm?page=autismas.html

Abnormal Attention in Autism Shown by Steady-State Visual Evoked Potentials Matthew Belmonte, Published 2000 http://journals.sagepub.com/doi/pdf/10.1177/1362361300004003004

Alexis Miranda Foundation http://alexismirandafoundation.org/

All Wales Autism Resource (AWARES) http://www.awares.org/

Applied Behavior Analysis (ABA) Educational Resources https://www.abaresources.com

Applied Behavior Analysis (ABA) Educational Resources Materials http://www.abaresources.com/free.html

Asperger Syndrome – What is Asperger Syndrome? http://aspennj.org/what-is-asperger-syndrome

Asperger/Autism Network (AANE) http://www.aane.org/

Autism Alliance of MetroWest http://www.autismalliance.org/

Autism Canada http://autismcanada.org/

Autism National Committee (AUTCOM) – Alternatives to Behaviorism Stanley Greenspan, MD, demonstrates the superiority of relationship-based approaches to Early Intervention. http://www.autcom.org/articles/Behaviorism.html

Autism Navigator Hundreds of video clips that are free of charge. http://www.autismnavigator.com/

Autism NI Northern Ireland http://autismni.org/

Autism Research Institute https://www.autism.com/

Autism Society of America http://www.autism-society.org/

Autism Spectrum Connection http://www.aspergersyndrome.org/

Autism Spectrum Disorders (ASDs) From the CDC. https://www.cdc.gov/ncbddd/autism/index.html

Autism Spectrum Disorders (ASDs) – Screening From the CDC. https://www.cdc.gov/ncbddd/autism/screening.html

Autism Spectrum Disorders and Pervasive Developmental Disorders http://www.med.umich.edu/yourchild/topics/autism.htm

Autism Spectrum Education Network (ASPEN) http://aspennj.org/

Autism and Vaccines From the Immunization Action Coalition http://www.immunize.org/autism/

Autism, Asperger’s Syndrome, and Semantic-Pragmatic Disorder: Where are the Boundaries? http://www.mugsy.org/bishop.htm

Center for Autism Research https://www.centerforautismresearch.org/

Center for Autism and Related Disabilities – SUNY University at Albany http://www.albany.edu/autism/

Doug Flutie, Jr. Foundation for Autism The Doug Flutie, Jr. Foundation offers grants made through IRS-approved 501(c)(3) and qualified schools which in turn provide services, family support, grants, and resources to families. http://www.flutiefoundation.org/

Evaluation of a Methodology for a Collaborative Multiple Source Surveillance Network for Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002 https://www.cdc.gov/mmwr/preview/mmwrhtml/ss5601a3.htm

Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs Published 2010 (PDF) http://pediatrics.aappublications.org/content/pediatrics/125/Supplement_1/S1.full.pdf

Google’s SketchUp Software and Individuals with Autism Spectrum Disorders From Google for Educators (PDF) https://static.googleusercontent.com/media/www.google.com/en//educators/learning_materials/Project_Spectrum_Manual.pdf

Handbook on Autism Cheryl Thacker – Masters Thesis, Published Aug 1996 (PDF) http://files.eric.ed.gov/fulltext/ED404828.pdf

Irish Society for Autism http://autism.ie/

Koegel Autism Center – UC Santa Barbara https://education.ucsb.edu/autism

MAAP Services for Autism and Asperger Syndrome http://maapservices.org/

Practical Oral Care for People with Autism From National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleAutism.htm

Prevalence of Autism Spectrum Disorders (2007 audio available via CDC, 14:44 minutes) https://www2c.cdc.gov/podcasts/player.asp?f=4731

Social Stories for Sexuality Education for Persons with Autism/Pervasive Developmental Disorder (abstract) http://link.springer.com/article/10.1007/s11195-007-9067-3

Study to Explore Early Development (SEED) From CDC. https://www.cdc.gov/ncbddd/autism/seed.html

The National Autistic Society UK. http://www.autism.org.uk/

Vaccine Safety: The Facts From the American Academy of Pediatrics. https://www.healthychildren.org/English/safety-prevention/immunizations/Pages/Vaccine-Safety-The-Facts.aspx

Cerebral Palsy

Aging and Cerebral Palsy: Pathways to Successful Aging (PDF) http://nysl.cloudapp.net/awweb/guest.jsp?smd=1&cl=all_lib&lb_document_id=12083

Center for Cerebral Palsy Spasticity St. Louis Children’s Hospital. http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity

Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by Special Care Advocates in Dentistry. (PDF) http://saiddent.org/admin/images/47744900_1461078646.pdf

JAMA Patient Page – Cerebral Palsy http://jamanetwork.com/journals/jama/fullarticle/186513

Learn More About Cerebral Palsy (2008 audio available via CDC, 8:44 minutes) https://www2c.cdc.gov/podcasts/player.asp?f=8536

Ontario Federation for Cerebral Palsy https://www.ofcp.ca/

Practical Oral Care for People with Cerebral Palsy From National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleCerebralPalsy.htm

Prospect Designs Manufacturers of standing aids. http://prospectdesigns.com/

Spastic Cerebral Palsy http://cpfamilynetwork.org/spastic-cerebral-palsy-facts-treatments-and-outcomes/

Tutorial for Cerebral Palsy – University of Virginia https://med.virginia.edu/pediatrics/about/clinical-and-patient-services/patient-tutorials/cerebral-palsy/

Uncertain Futures – Aging and Cerebral Palsy (PDF) http://www.rrtcadd.org/resources/Resources/Topics-of-Interest/CP/future.pdf

Children with AIDS

Baylor International Pediatric AIDS Initiative (BIPAI) http://bipai.org/

Exposure to Blood. What Healthcare Personnel Need to Know From the CDC. (PDF) https://www.cdc.gov/hai/pdfs/bbp/exp_to_blood.pdf

HIV and Psychiatry: A Training and Resource Manual (PDF) https://ww1.cpa-apc.org/Publications/HIV/HIV.asp

Issues Related to HIV Transmission in Schools, Child Care, Medical Settings, the Home, and Community http://pediatrics.aappublications.org/content/104/2/318.long

Overview of HIV Treatments https://www.aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/treatment-options/overview-of-hiv-treatments/

Communication

Americans with Disabilities Act (ADA) Q&A: Health Care Providers http://www.pacer.org/publications/adaqa/health.asp

Apraxia-KIDS The Childhood Apraxia of Speech Association of North America (CASANA) http://www.apraxia-kids.org/

International Society for Augmentative and Alternative Communication (ISAAC) https://www.isaac-online.org/english/home/

Language and Communication: The Key is Effectiveness https://www.kennedykrieger.org/patient-care/outpatient-programs/language_communication_down_syndrome_asd

News-2-You A weekly online newspaper for beginning readers and individuals with special needs. https://www.n2y.com/news-2-you/

Rett Syndrome and Communication https://www.rettsyndrome.org/for-families/communication

Spoken Language Disorders American Speech-Language-Hearing Association. http://www.asha.org/Practice-Portal/Clinical-Topics/Spoken-Language-Disorders/

Congenital/Chromosomal

Aicardi Syndrome From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Aicardi-Syndrome-Information-Page

Aicardi-Goutieres Syndrome From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Aicardi-Goutieres-Syndrome-Disorder-Information-Page

Alexander Disease From the United Leukodystrophy Foundation (ULF). http://ulf.org/alexander-disease

Angelman Syndrome From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Angelman-Syndrome-Information-Page

Aspartylglucosaminuria From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/aspartylglucosaminuria

Ataxia-telangiectasia (AT) From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Ataxia-Telangiectasia-Information-Page

Ataxia-telangiectasia – The AT Children’s Project http://www.atcp.org/

Autosomal dominant nocturnal frontal lobe epilepsy From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/autosomal-dominant-nocturnal-frontal-lobe-epilepsy

Batten Disease From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Batten-Disease-Information-Page

Batten Disease (juvenile) From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/juvenile-batten-disease

Cri du Chat Syndrome From the National Human Genome Research Institute. https://www.genome.gov/19517558/learning-about-cri-du-chat/

Donnai-Barrow Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/donnai-barrow-syndrome

Dopamine function in Lesch-Nyhan disease (PDF) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1637829/pdf/envhper00312-0047.pdf

Fetal Hydantoin Syndrome https://rarediseases.org/rare-diseases/fetal-hydantoin-syndrome/

Five P Minus Society – Cri du Chat Syndrome https://www.fivepminus.org/

GM1 gangliosidosis From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/gm1-gangliosidosis

Glutamate formiminotransferase deficiency From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/glutamate-formiminotransferase-deficiency

History of the 22q11.2 Deletion Donna M. McDonald-McGinn, M.S. and Elaine H. Zackai, M.D. http://www.cbil.upenn.edu/VCFS/history.html

International Rett Syndrome Foundation (IRSF) https://www.rettsyndrome.org/

Jacobsen Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/jacobsen-syndrome

Koolen-de Vries Syndrome Formerly 17q21.31 microdeletion syndrome. From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/koolen-de-vries-syndrome

L1 Syndrome From Genetics Home Reference https://ghr.nlm.nih.gov/condition/l1-syndrome

Lesch-Nyhan Syndrome From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Lesch-Nyhan-Syndrome-Information-Page

Microcephaly From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Microcephaly-Information-Page

Miller-Dieker Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/miller-dieker-syndrome

Mucolipidosis type IV The ML4 Foundation. http://ml4.org/

Mucolipidosis type IV From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/mucolipidosis-type-iv

Mucolipidosis type IV: An Update From the National Center for Biotechnology Information. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3205274/

Mucopolysaccharidosis type I From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-i

National Ataxia Foundation http://www.ataxia.org/

Neurofibromatosis type I (NF-1) From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/neurofibromatosis-type-1

Ornithine transcarbamylase deficiency From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/ornithine-transcarbamylase-deficiency

Pallister-Killian Mosaic Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/pallister-killian-mosaic-syndrome

Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS) https://www.prisms.org/

Pelizaeus-Merzbacher Disease PMD Foundation. http://pmdfoundation.org/what-is-pmd/

Pelizaeus-Merzbacher Disease From the National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/pelizaeus-merzbacher-disease/

Pelizaeus-Merzbacher Disease From National Institute of Neurological Disorders and Stroke (NINDS).   https://www.ninds.nih.gov/Disorders/All-Disorders/Pelizaeus-Merzbacher-Disease-Information-Page

Pelizaeus-Merzbacher Disease From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/pelizaeus-merzbacher-disease

Pelizaeus-Merzbacher Disease From Wayne State University School of Medicine. http://neurology.med.wayne.edu/neurogenetics/about.php

Peters Plus Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/peters-plus-syndrome

Phelan-McDermid Syndrome From the National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/phelan-mcdermid-syndrome/

PLP1-Related Disorders From the National Center for Biotechnology Information. https://www.ncbi.nlm.nih.gov/books/NBK1182/

Polymicrogyria From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/polymicrogyria

Rett Syndrome From National Institute of Neurological Disorders and Stroke (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Rett-Syndrome-Information-Page

Ring Chromosome 14 Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/ring-chromosome-14-syndrome

Ring Chromosome 20 Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/ring-chromosome-20-syndrome

Septo-optic Dysplasia From National Institute of Neurological Disorders and Stroke (NINDS).   https://www.ninds.nih.gov/Disorders/All-Disorders/Septo-Optic-Dysplasia-Information-Page

Spastic Paraplegia type 11 From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/spastic-paraplegia-type-11

Velocardiofacial Syndrome 22q11 and VCFS Foundation http://www.vcfsfa.org.au/pages/what-is-22q.php

Velocardiofacial Syndrome From the National Human Genome Research Institute https://www.genome.gov/25521139/learning-about-velocardiofacial-syndrome/

WAGR Syndrome Named for its features: Wilms tumor, anirida, genitourinary anomalies, and intellectual disability (formerly known as mental retardation). From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/wagr-syndrome

Wolf-Hirschhorn Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/wolf-hirschhorn-syndrome

Courses

PLEASE NOTE: These are links to Continuing Education that may be of interest to developmental disabilities nurses. For the purposes of CDDN and DDC renewal, these MAY or MAY NOT BE I/DD-specific courses. If they are not I/DD specific, they can be used as acceptable related (not-I/DD-specific) coursework.  A maximum of ten hours of related course work is permitted for certification renewal.

Cuturally Competent Nursing Care: A Cornerstone of Caring No cost course, accredited for up to 9 hours through ANCC. Note: does not count toward developmental disabilities CDDN or DDC certification, but may be used toward state relicensure. https://ccnm.thinkculturalhealth.hhs.gov/

NDNQI Pressure Ulcer Training 1.5 contact hours available https://members.nursingquality.org/NDNQIPressureUlcerTraining/

Deaf/Blind

Accessible Design for the Blind http://accessforblind.org/

Alexander Graham Bell Association http://www.agbell.org/

American Speech-Language Hearing Association http://www.asha.org/

Deafblind Manual Alphabet http://www.deafblind.com/card.html

Helen Keller National Center for Deaf-Blind Youths & Adults https://www.helenkeller.org/hknc

Intro to Vestibular System From McGill University. https://www.mcgill.ca/vestibular-gazecontrol-lab/intro-vestibular-system

National Center on Deaf-Blindness https://nationaldb.org/

National Institute on Deafness and Other Communication Disorders (NIDCD) https://www.nidcd.nih.gov/

Royal National Institute of the Blind http://www.rnib.org.uk/

Signing Savvy Online American Sign Language dictionary. https://www.signingsavvy.com/

 

Dental/Oral Health

A Caregiver’s Guide to Good Oral Health for Persons with Special Needs Information provided by the Special Olympics. (PDF) http://media.specialolympics.org/soi/files/healthy-athletes/Special%20_Smiles_Good_Oral_Health_Guide.pdf

Administrative Issues in the Practice of Dentistry in the MR/MH Institutional Setting Self-study Course presented by the Southern Association of Institutional Dentists. (PDF) http://saiddent.org/admin/images/27961900_1339447233.pdf

Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by Special Care Advocates in Dentistry. (PDF) http://saiddent.org/admin/images/47744900_1461078646.pdf

Clinical Concerns in the Provision of Dental Care for Patients with Intellectual Disability Self-Study Course presented by Special Care Advocates in Dentistry. (PDF) http://saiddent.org/admin/images/33069700_1461078598.pdf

Developmental Disabilities and Oral Health From the National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/

Down Syndrome: A Review for Dental Professionals Self-Study Course presented by Special Care Advocates in Dentistry. (PDF) http://saiddent.org/admin/images/45319200_1461078622.pdf

Intellectual Disability: A Review for Dental Professionals Self-Study Course presented by Special Care Advocates in Dentistry. (PDF) http://saiddent.org/admin/images/77014800_1461077321.pdf

Practical Oral Care for People with Autism From National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleAutism.htm

Practical Oral Care for People with Cerebral Palsy From National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleCerebralPalsy.htm

Practical Oral Care for People with Down Syndrome From National Institute of Dental and Craniofacial Research. https://www.nidcr.nih.gov/oralhealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleDownSyndrome.htm

Using Personal Digital Assistants to Improve Self-Care in Oral Health Published 2008. (PDF) http://journals.sagepub.com/doi/pdf/10.1258/jtt.2008.003016

Developmental/Functional

APGAR Scoring for Newborns https://medlineplus.gov/ency/article/003402.htm

American Academy of Pediatrics https://www.aap.org/en-us/Pages/Default.aspx

Anencephaly From the CDC. https://www.cdc.gov/ncbddd/birthdefects/anencephaly.html

Developmental Surveillance and Screening of Infants and Young Children American Academy of Pediatrics. http://pediatrics.aappublications.org/content/108/1/192

Growth Charts Training From the CDC. https://www.cdc.gov/nccdphp/dnpao/growthcharts/

Hydrocephalus Association http://www.hydroassoc.org/

International Rett Syndrome Foundation (IRSF) https://www.rettsyndrome.org/

National Technical Assistance Center on Positive Behavioral Interventions and Supports (PBIS) https://www.pbis.org/

Newborn Screening From March of Dimes. http://www.marchofdimes.org/baby/newborn-screening-tests-for-your-baby.aspx

Newborn Screening Practitioner’s Manual Illinois Department of Public Health, 2011. http://www.idph.state.il.us/HealthWellness/Newborn_Screening_Practitioners_Manual.pdf

Down Syndrome

Breastfeeding a Baby with Down Syndrome Canadian Down Syndrome Society. (PDF) http://www.ndsccenter.org/wp-content/uploads/CDSS_breastfeeding_brochure.pdf

Dermatological Manifestations of Down’s Syndrome (abstract) https://www.ncbi.nlm.nih.gov/pubmed/16901300

Down Syndrome Research Foundation http://www.dsrf.org/

Down Syndrome for New Parents http://www.downs-syndrome.org.uk/for-new-parents/

LuMind Research Down Syndrome Foundation https://www.lumindrds.org/

National Association for Down Syndrome http://www.nads.org/

National Down Syndrome Congress https://www.ndsccenter.org/

National Down Syndrome Society http://www.ndss.org/

People with Down Syndrome: Your Questions Answered (PDF) http://www.downs-syndrome.org.uk/?wpdmdl=13216

 

Education

Courses, papers, and educational resources. Webcasts (archived).

American Association on Intellectual and Developmental Disabilities (AAIDD) Journal articles. https://aaidd.org/

Estia Centre The Estia Centre is a training, research, and development resource for those who support adults with learning disabilities and additional mental health needs. http://www.slam.nhs.uk/about-us/clinical-academic-groups/behavioural-and-developmental/estia

Fetal Treatment Center Videos and other information about birth defects from UC San Francisco. https://fetus.ucsf.edu/

Individuals with Disabilities Education Act (IDEA) IDEA governs how states and public agencies (in the US) provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities. http://idea.ed.gov/explore

Learning about Intellectual Disabilities and Health A web-based learning resource for medical and healthcare students and practicioners. http://www.intellectualdisability.info/

Public Health Live Archived streamable broadcasts from the School of Public Health at SUNY Albany. http://www.albany.edu/sph/cphce/phlchron.shtml

Emergency Preparedness

FEMA Accessible Emergency Management https://www.fema.gov/disability

Pandemic Influenza: An Analysis of State Preparedness and Response Plans This Congressional Research Service report includes an analysis of state pandemic influenza plans in eight topical areas: (1) leadership and coordination; (2) surveillance and laboratory activities; (3) vaccine management; (4) antiviral drug management; (5) other disease control activities; (6) communications; (7) healthcare services; and (8) other essential services. Published 2007. https://fas.org/sgp/crs/homesec/RL34190.pdf

Ready.gov Instructional Videos These United States Department of Homeland Security (DHS) demonstration videos, part of the Ready Campaign, highlight the specific steps older Americans, individuals with disabilities and special needs, and pet owners should take to prepare for emergencies. DHS worked with the AARP, the National Organization on Disability, and The Humane Society of the United States to develop these new emergency preparedness resources. https://www.ready.gov/psa-multimedia

End of Life

American Academy of Hospice and Palliative Medicine http://aahpm.org/

Association for Death Education and Counseling http://www.adec.org/adec/default.aspx

Do Not Resuscitate Policy Via InclusionBC. http://www.inclusionbc.org/about-us/social-policy-positions/do-not-resuscitate

End-of-Life Care for Children with Terminal Illness From Nemours. http://www.nemours.org/service/medical/pediatric-palliative-care.html?tab=about&kidshealth=bfs-hospice-care

End of Life Journal Free, peer-reviewed journal for nurses and others working in health and social care. http://eolj.bmj.com/

Hospice Patients Alliance http://www.hospicepatients.org/

Promoting Excellence in End-of-Life Care http://promotingexcellence.growthhouse.org/

Seven Legal Barriers to End-of-Life Care (PDF) https://www.acponline.org/system/files/documents/clinical_information/resources/end_of_life_care/eol_barriers.pdf

The Compassionate Friends Supporting Family After a Child Dies. https://www.compassionatefriends.org/

The Geese and the Peanut Butter Chocolate Ice Cream: The Grieving Gifts to the Lexington Street Community A resource to help individuals with developmental disabilities and people who support them grieve the death of loved ones. From the Boggs Center website. (PDF) http://rwjms.rutgers.edu/boggscenter/products/documents/GRIEFRESOURCE.pdf

Thinking Ahead: Advance Care Planning for People with Developmental Disabilities (PDF) https://www.cedarville.edu/~/media/Files/PDF/Event/Healthcare-Ethics-Conference/McReynolds-Kathy_Thinking-Ahead_SLIDES.pdf

 

Environmental Health

Chemical Pollution in the U.S. that Affects Child Development and Learning Published 2000 (PDF) http://grconnect.com/reports/pollutingourfuture.pdf

Environmental Health Education Center University of Maryland School of Nursing http://old.cehn.org/environmental_health_education_center

Genes, Behavior, the Environment, and Health National Institutes of Health https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=41

Español

Asociación Española para el Síndrome de Prader-Willi (AESPW) http://www.aespw.org/inicio/index.html

Asociación Nacional de Afectados por El Sindrome del Maullido del Gato (ASIMAGA) http://www.asimaga.org/

Autismo Autism Society. http://www.autism-society.org/en-espanol/

El Síndrome de Rett Instituto Nacional de Trastornos Neurológicos y Accidentes Cerebrovasculares. https://espanol.ninds.nih.gov/trastornos/el_sindrome_de_rett.htm

Enfermedad de Tay-Sachs y de Sandhoff March of Dimes. http://nacersano.marchofdimes.org/complicaciones/enfermedad-de-tay-sachs-y-de-sandhoff.aspx

Esclerosis Tuberosa Instituto Nacional de Trastornos Neurológicos y Accidentes Cerebrovasculares. https://espanol.ninds.nih.gov/trastornos/esclerosis_tuberosa.htm

Espina Bífida Instituto Nacional de Trastornos Neurológicos y Accidentes Cerebrovasculares. https://espanol.ninds.nih.gov/trastornos/espina_bifida.htm

Hidrocefalia Instituto Nacional de Trastornos Neurológicos y Accidentes Cerebrovasculares. https://espanol.ninds.nih.gov/trastornos/hidrocefalia.htm

La Epilepsia Epilepsy Foundation http://www.epilepsy.com/learn/diverse-communities/la-epilepsia

Nacersano.org March of Dimes. http://nacersano.marchofdimes.org/

Prevalencia de los Trastornos del Espectro Autista Un minute de salud con los CDC. (1:46 minutos) https://www2c.cdc.gov/podcasts/player.asp?f=6394

Problemas en los Cromosomas del Sexo Descubiertos a Través del Diagnóstico Prenatal https://www.westernstatesgenetics.org/pacnorgg/PDFs_all-081409/Spanish/XXXSyndrom_spanish.pdf

Trastorno de estrés postraumático MedlinePlus. https://medlineplus.gov/spanish/posttraumaticstressdisorder.html

Trastornos del espectro autista Instituto Nacional de Trastornos Neurológicos y Accidentes Cerebrovasculares. https://espanol.ninds.nih.gov/trastornos/autismo.htm

 

Ethical Issues

End-of-Life Care for a Man with Developmental Disabilities http://www.medscape.com/viewarticle/449428

Fetal Alcohol Syndrome

Fetal Alcohol Syndrome Diagnostic and Prevention Network University of Washington, Seattle. http://depts.washington.edu/fasdpn/index.htm

Fetal Alcohol Spectrum Disorders (FASDs) From the CDC. https://www.cdc.gov/ncbddd/fasd/

Fetal Alcohol Spectrum Disorders MedlinePlus. https://medlineplus.gov/fetalalcoholspectrumdisorders.html

Guidelines for Identifying and Referring Persons with Fetal Alcohol Syndrome From the CDC. Published 2005. (PDF) https://www.cdc.gov/mmwr/pdf/rr/rr5411.pdf

National Organization on Fetal Alcohol Syndrome http://www.nofas.org/

 

Fragile X Syndrome

Fragile X Video from the CDC (2:31). https://www.cdc.gov/ncbddd/fxs/video/fragilex-4.html

Fragile X Research Foundation of Canada http://www.fragilexcanada.ca/index.php?home&lng=en

Fragile X Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/fragile-x-syndrome

FRAXA Research Foundation http://www.fraxa.org/

Learning About Fragile X Syndrome From National Human Genome Research Institute. https://www.genome.gov/19518828/

National Fragile X Foundation https://fragilex.org/

Français

La Fondation Albert Costa de Beauregard http://www.fondation-acb.org/

Orphanet http://www.orpha.net/consor/cgi-bin/index.php

General Resources

Adults with Williams Syndrome Guidelines for Families and Professionals http://willik.tym.cz/ke_stazeni/guidelines_for_professionals.pdf

Aging Out of Early and Periodic Screening, Diagnostic, and Treatment (EPSDT): Issues for Young Adults with Disabilities Published 2007. (PDF) https://kaiserfamilyfoundation.files.wordpress.com/2013/01/7491.pdf

American Brain Coalition http://www.americanbraincoalition.org/

American Horticultural Therapy Association Information about this national organization concerned with the promotion and development of horticultural therapy as a therapeutic and rehabilitative medium for persons who are disabled. http://ahta.org/

Association for Behavior Analysis International (ABAI) A nonprofit professional membership organization with the mission to develop, enhance, and support the growth and vitality of behavior analysis through research, education, and practice. https://www.abainternational.org/welcome.aspx

Chartbook on Women and Disability in the United States (PDF) http://www.infouse.com/disabilitydata/womendisability/womendisability.pdf

Coping with Disaster: Suggestions for Helping Children with Cognitive Disabilities https://ici.umn.edu/products/impact/201/over9.html

Cornucopia of Disability Information Use the links on the left. http://codi.tamucc.edu/

Delivering Diabetes Care to People with Intellectual Disability (PDF) https://www.idf.org/sites/default/files/attachments/article_512_en.pdf

Disability Statistics Cornell University’s Online Resource for U.S. Disability Statistics https://www.disabilitystatistics.org/

Gastronomy Tube (G-Tube) https://www.disabilitystatistics.org/

Good Practice in Learning Disability Nursing UK Department of Health. This document provides good practice guidance to support learning disability nursing to make a major contribution to the health and wellbeing of people with a learning disability in the future. Published 2007. (PDF) http://www.hscbusiness.hscni.net/pdf/DH_Good_practice_in_learning_disability_nursing-2007_pdf.pdf

Guide to Genetic Disorders https://www.healthdirect.gov.au/guide-to-genetic-disorders

Institute for Safe Medication Practice (ISMP) List of Confused Drug Names (PDF) https://www.ismp.org/tools/confuseddrugnames.pdf

Institute for Safe Medication Practice (ISMP) List of Error-Prone Abbreviations, Symbols, and Dose Designations (PDF) https://www.ismp.org/tools/errorproneabbreviations.pdf

Massachusetts Health Promotion Clearinghouse Provides free health promotion materials. https://massclearinghouse.ehs.state.ma.us/

Meeting the Health Needs of People with Learning Disabilities Royal College of Nursing. (PDF) https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/publications/2013/november/pub-003024.pdf

Mental Health Nursing of Adults with Learning Disabilities Royal College of Nursing. (PDF) https://www2.rcn.org.uk/__data/assets/pdf_file/0006/78765/003184.pdf

 

Genetics

22q and You Center Children’s Hospital of Philadelphia http://www.chop.edu/centers-programs/22q-and-you-center

Chromosome 18 Clinical Research Center UT Health Science Center – San Antonio http://www.pediatrics.uthscsa.edu/centers/chromosome18/

Cornelia de Lange Syndrome From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/cornelia-de-lange-syndrome

 

Governmental Resources

Administration on Aging (AOA) US Department of Health and Human Services https://aoa.acl.gov/

Centers for Disease Control and Prevention (CDC) https://www.cdc.gov/

Medicare Hospice Benefits https://www.medicare.gov/pubs/pdf/02154.pdf

 

Grants/Funding

AbleDATA – Funding Resource Center Links to sources of funding for assistive technology http://www.abledata.com/resources

Health Care Protocols

Consensus Guidelines for Primary Health Care of Adults with Developmental Disabilities From National Institutes of Health. Published 2006. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783706/

Dentistry for the Disabled Child and Adult http://www.our-kids.org/Archives/dentistry_disabled.html

Disparities in Breast Cancer Treatment and Survival for Women with Disabilities From National Institutes of Health. Published 2006. (PDF) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442165/pdf/nihms41802.pdf

Health/Wellness

Aging with Developmental Disabilities: Meeting Social and Recreation Needs https://ici.umn.edu/products/impact/162/over8.html

Developmental Disability and Fitness National Center on Health, Physical Activity, and Disability. http://www.nchpad.org/104/795/Developmental~Disability~and~Fitness

Exercise Videos From the National Center on Health, Physical Activity, and Disability. http://www.nchpad.org/Videos

National Center on Health, Physical Activity, and Disability (NCHPAD) http://www.nchpad.org/

Healthcare Advocacy

Family Crisis Handbook A resource to families who may, at times, face various crises. (PDF) http://www.njamha.org/documents/FamilyCrisishandbook.pdf

Office of Developmental Primary Care UC – San Francisco Department of Family and Community Medicine. http://odpc.ucsf.edu/

History of I/DD Nursing

Fairview: The Closing Chapter http://www.people1.org/Fairview/closingarticle11.htm

Focus on History of Disabilities Journal on Developmental Disabilities – Volume 4, Number 1. Published by the Ontario Association on Developmental Disabilities, 1995. (PDF) http://oadd.org/wp-content/uploads/2016/12/vol4no1.pdf

Partners in Time A self-study course that explores society’s treatment of people with developmental disabilities throughout history. http://partnersonlinecourses.com/partners-in-time/

 

Hydrocephalus

About Normal Pressure Hydrocephalus (NPH) From the Hydrocephalus Association. (PDF) http://www.hydroassoc.org/docs/NPH-booklet.pdf

College and Hydrocephalus From the Hydrocephalus Association. (PDF) http://www.hydroassoc.org/docs/FactSheet_College_&_Hydro.pdf

Diagnosis and Symptoms From the Hydrocephalus Association. http://www.hydroassoc.org/symptoms-and-diagnosis/

Frequently Asked Questions about Hydrocephalus https://www.shinecharity.org.uk/hydrocephalus/normal-pressure-hydrocephalus/normal-pressure-hydrocephalus-frequently-asked-questions

I/DD in Justice System

First Response to Victims of Crime Who Have a Disability A handbook for law enforcement officers on how to approach and help crime victims who have Alzheimer’s Disease, developmental disabilities, mental illness, or who are blind or visually impaired, deaf, or hard of hearing. (PDF) http://www.disability-abuse.com/resources/OVC-ReportFirst-Response-To-Victims-Of-Crime-Who-Have-Disabilities.pdf

Serving Women with Developmental Disabilities: Strategies for the Justice System https://ici.umn.edu/products/impact/133/over7.html

Tennard v. Dretke http://caselaw.findlaw.com/us-supreme-court/542/274.html

Wallet Card for Disclosure to First Responders and Law Enforcement Helps identify individuals with Aspergers. http://milestones.org/?resource=wallet-card-for-disclosure-to-first-responders-and-law-enforcers

 

Inclusion Issues

Accommodation and Compliance Series – Employees with Epilepsy or Seizure Disorders From the Job Accommodate Network. (PDF) http://askjan.org/media/downloads/EpilepsyorSeizureA&CSeries.pdf

“Community for All” Tool Kit Resources for supporting community living. (PDF) http://thechp.syr.edu/wp-content/uploads/2013/02/Community_for_All_Toolkit_Version1.1.pdf

Disability Etiquette – Using Words with Dignity http://www.crinet.org/education/independent%20living/etiquette#Using_words_with_Dignity

 

Legal Issues

Center on Human Policy, Law, and Disability Studies Syracuse University School of Education. http://soeweb.syr.edu/centers_institutes/center_human_policy/default.aspx

Developmental Disabilities Assistance and Bill of Rights Act (PDF) https://acl.gov/Programs/AIDD/DDA_BOR_ACT_2000/docs/dd_act.pdf

H.R. 3260: Eleanor Smith Inclusive Home Design Act of 2015 Bill introduced to require all newly constructed, federally assisted, single-family houses and town houses to meet minimum standards of visitability for persons with disabilities. https://www.govtrack.us/congress/bills/114/hr3260

Metabolic Disorders

Sandhoff Disease From Genetics Home Reference https://ghr.nlm.nih.gov/condition/sandhoff-disease

Neurological Assessment

Adult Hydrocephalus Center http://www.lifebridgehealth.org/BrainSpine/AdultHydrocephalusCenter.aspx

BAER: Brainstem Auditory Evoked Response https://medlineplus.gov/ency/article/003926.htm

Romberg’s Test http://www.bioline.org.br/request?jp03045

Older Adults: LTC

Aging with Developmental Disabilities: Changes in Vision Via Rehabilitation Research and Training Center on Developmental Disabilities and Health. http://www.rrtcadd.org/resources/Resources/Publications/Health-promotion/Briefs-&-Reports/500003_changesInVision.html

Aging and Cerebral Palsy: Pathways to Successful Aging (PDF) http://nysl.cloudapp.net/awweb/guest.jsp?smd=1&cl=all_lib&lb_document_id=12083

Aging with Developmental Disabilities: Meeting Social and Recreation Needs https://ici.umn.edu/products/impact/162/over8.html

 

Pain Management

American Academy of Pain Management https://www.aapainmanage.org/

American Academy of Pain Medicine http://www.painmed.org/

American Pain Society http://americanpainsociety.org/

 

Papers

Current and Emerging Therapeutics of Autistic Disorder and Related Pervasive Developmental Disorders (PDF) http://www.acnp.org/asset.axd?id=d8308798-18d8-4d3c-b9af-7d1da1c6c3e9

Partnerships/Delegation

Disability Care Coordination Organizations – The Experience of Medicaid Managed Care Programs for People with Disabilities Center for Health Care Strategies. (PDF) http://www.chcs.org/media/DCCOs.pdf

Measuring the Effectiveness of Managed Care for Adults with Disabilities Center for Health Care Strategies. (PDF) http://www.chcs.org/media/CCOMeasures_final.pdf

Phenylketonuria

Minnesota PKU Foundation http://www.mnpku.org/home.html

University of Washington PKU Clinic https://depts.washington.edu/pku/

 

Podcasts

Music Therapy for Adults with I/DD This show is about music therapy for adults with developmental disabilities. http://amtapro.musictherapy.org/?p=1577

 

Policy Papers

A Consensus Statement on Health Care Transitions for Young Adults with Special Care Needs American Academy of Pediatrics. Published 2002. (PDF) http://pediatrics.aappublications.org/content/pediatrics/110/Supplement_3/1304.full.pdf

American Association on Intellectual and Developmental Disabilities (AAIDD) Position Statements https://aaidd.org/news-policy/policy/position-statements#.WGVXtVMrLIU

American Association on Intellectual and Developmental Disabilities (AAIDD) – Aging https://aaidd.org/news-policy/policy/position-statements/aging#.WGVaE1MrLIU

 

Prader-Willi Syndrome

International Prader-Willi Syndrome Organization http://www.ipwso.org/

Prader-Willi Alliance of New York http://www.prader-willi.org/

Prader-Willi Syndrome American Family Physician http://www.aafp.org/afp/2005/0901/p827.html

Prader-Willi Syndrome Association http://www.pwsausa.org/

Prenatal

Amniocentesis American Pregnancy Association http://americanpregnancy.org/prenatal-testing/amniocentesis/

Folic Acid for the Prevention of Neural Tube Defects American Academy of Pediatrics. Published 1999. (PDF) http://pediatrics.aappublications.org/content/pediatrics/104/2/325.full.pdf

Maternal Phenylketonuria American Academy of Pediatrics. Published 2008. (PDF) http://pediatrics.aappublications.org/content/122/2/445.full-text.pdf

 

Psychiatric/Behavioral

Depression From the National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/depression/index.shtml

Family Crisis Handbook A resource to families who may, at times, face various crises. (PDF) http://www.njamha.org/documents/FamilyCrisishandbook.pdf

 

Mental Illness in Persons with Mental Retardation http://www.plboard.com/4agency/training/032306/032306.pdf

 

Publications

Canadian Family Physician http://www.cfp.ca/

Impact A publication of the Institute on Community Integration and the Research and Training Center on Community Living, College of Education and Human Development, University of Minnesota. https://ici.umn.edu/index.php?products/view_all/14

Journal of Early and Intensive Behavior Intervention https://www.jeibi.com/

 

Seizure Care

Epilepsy From the National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/All-Disorders/Epilepsy-Information-Page

New Guideline for the Diagnostic Assessment of Children with Continuous Seizures American Academy of Neurology. Published 2006. https://www.aan.com/PressRoom/Home/PressRelease/416

American Epilepsy Society https://www.aesnet.org/

 

Self-Advocacy

Advocating Change Together http://selfadvocacy.org/

Independent Living Institute http://www.independentliving.org/indexen.html

Kids as Self Advocates (KASA) http://www.fvkasa.org/index.php

Sensory Integration

Sensory Processing Disorder https://www.spdstar.org/basic/about-spd

Vision Play – EASe CD Electronic Auditory Stimulation Effect CD. Claims to achieve the same results as auditory integration therapy for PDD children. Non-profit organizations treating brain-injured children can get a free CD. https://vision-play.com/

Sexuality

American Association on Intellectual and Developmental Disabilities (AAIDD) – Sexuality https://aaidd.org/news-policy/policy/position-statements/sexuality#.WGVio1MrLIU

Discrimination, Sexuality, and People with Significant Disabilities Published 2002. http://dsq-sds.org/article/view/369/485

Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations Published 2001. (PDF) http://lurie.brandeis.edu/pdfs/TableMannersandBeyond.pdf

Sexually Transmitted Diseases From the CDC. https://www.cdc.gov/std/default.htm

 

Social Networks

 

Specialized Products

AbilityHub Seeks to improve the independence of persons living with Autism Spectrum Disorder. http://www.theabilityhub.org/

Enabling Devices Affordable assistive and learning devices for the physically challenged. http://enablingdevices.com/catalog

Kaye Products Manufactures and sells mobility aids, adaptive positioning equipment, and therapy products for infants, children and young adults with special needs. http://kayeproducts.com/

 

Spina Bifida

Children and Adults with Spina Bifida and Hydrocephalus: A Resource for Families and Providers http://www.waisman.wisc.edu/~rowley/sb-kids/

Spina Bifida and Hydrocephalus Association of Canada (SBHAC) http://sbhac.ca/

Spina Bifida Association http://spinabifidaassociation.org/

 

Support Networks

4p- Support Group http://4p-supportgroup.org/

ARCH National Respite Network https://archrespite.org/

Best Buddies The mission of Best Buddies is to enhance the lives of people with intellectual disabilities by providing opportunities for one-to-one friendships and integrated employment. https://bestbuddies.org/

 

Swine Flu (H1N1)

Tay-Sachs Disease

Tay-Sachs Disease From the National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/All-Disorders/Tay-Sachs-Disease-Information-Page

Tay-Sachs Disease From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/tay-sachs-disease

Tay-Sachs Disease, AB Variant From Genetics Home Reference. https://ghr.nlm.nih.gov/condition/gm2-gangliosidosis-ab-variant

 

Transitions – Child to Adult

Eliminating Health Disparities for Individuals with Mental Retardation and Other Developmental Disbailities. American Academy of Developmental Medicine and Dentistry. Published 2003. http://www.jdentaled.org/content/67/12/1337.long

Pre-school Children with and without Developmental Delay: Behaviour Problems and Parenting Stress Over Time Journal of Intellectual Disability Research. Published 2003. http://escholarship.org/uc/item/5f28z26b

Sexuality Education for Children and Adolescents with Developmental Disabilities Florida Developmental Disabilities Council. Published 2005. (PDF) http://ceacw.org/docs/parentworkbook.pdf

 

 

Traumatic Brain Injury

Brain Injury Association of America http://www.biausa.org/

Injury Prevention and Control – Traumatic Brain Injury and Concussion From the CDC. https://www.cdc.gov/traumaticbraininjury/prevention.html

 

Tuberous Sclerosis

Brain Imaging in Tuberous Sclerosis From the Tuberous Sclerosis Association. (PDF) http://www.tuberous-sclerosis.org/_literature_117937/Brain_Imaging_in_TSC

Tuberous Sclerosis Association http://www.tuberous-sclerosis.org/