Children with Special Needs Internet Guide for Parents and Professionals Delaware Health & Social Services Birth to Three Early Intervention System This guide was produced to help parents and professionals seeking information about children with special needs gain access to the various web sites that may address needs or questions they have. The Internet is a source of information that may or may not contain valid information. Information derived from these sites does not necessarily reflect the opinions or practices of anyone involved with the Birth to Three Early Intervention System. This guide serves as a resource only, not as an endorsement or validation for the information provided by the site. Information provided by the sites should not be construed as medical advice. Please consult your health care professional before making any decisions regarding your child’s health care needs. Basic Internet Directions: ? When you begin a search on the Internet, there are many search engines that can be used to search for a topic of choice. A search engine is a webpage database that gives an option to search for various topics. Each differs in the way the results of the search are displayed. Any search engine may be used depending upon the personal preference of the searcher, and you may find different sites located in each engine. You may also find that the search results of one day may be different then a previous day due to the many changes that occur on the Internet from day to day. ? Below are listings of search engines and websites that may be useful to you as you begin your search. The way that these engines and sites can be found is to do the following: 1. When you begin use of the Internet, you will be on a main page that will be a search engine of its own. It could be any one, dependent on the server that that is used. For example, this could be America on-line, Netscape, AT&T, etc. 2. If you want to search from this screen, simply go to the search box and enter the keywords of the topic of interest. Results will be displayed and you will be able to choose the topic or site of your choice. You will be able to return to that search site from the new site that you go to by clicking on the back square at the top of the screen. 3. If this search engine is not what you want to use, find the long box at the top of the screen where the word 'address' is located. From here click once on the website address, for example http://www.yahoo.com. Doing this will turn it blue in color and then by hitting backspace it will be erased. A double click on this will allow you to have a cursor in the address box and from there you can blackout any part of it you wish. 4. When it is blank, you may enter a new address that should always start with: http:// Sometimes you will need the www after this, and other times it is not needed (it should be entered if it is written that way on this sheet). 5. When you are finished typing in the entire address, press ‘enter’ and the computer will search for the website of your request. 6. If an error message is given, check the address and re-enter. Sometimes the server for the site is down and it may be advisable to try again another time. Below are the addresses for some search engines and websites that may be helpful to you. Good Luck and enjoy surfing the Web. Search Engines Alta Vista www.altavista.com Amazon www.amazon.com Excite www.excite.com Go www.go.com Google www.google.com Ifind www.ifind.com Lycos www.lycos.com Meta Crawler www.Metacrawler.com Savvy Search www.search.com Snap www.snap.com Web Crawler www.webcrawler.com Yahoo www.yahoo.com Medline Search (Medical search engines) Health Gate Medline Access http://www.healthgate.com/ Health World Medline Access http://www.healthy.net/library/search/medline.htm MedScape www.medscape.com/ Web.MD www.webmd.com Table of Contents Delaware Health & Social Services 1 Table of Contents 5 Government 8 Laws concerning Disability 9 Financial Issues 9 Early Intervention/Early Childhood 9 Transition 10 Advocacy 11 Parent & Family: Information and Support 12 Sibling Relationships 13 Technology 13 Adaptive Toys 14 Adaptive Clothing 14 Adaptive Equipment 15 Activities 15 Entertainment 15 National Disability Organizations 16-18 General Disability Sites 18-19 Specific Disability Sites ADD/ADHD 19 Autism 20-21 Asperger’s Syndrome 21 Bone Disorders 22 Brain Injury 22 Cerebral Palsy 23 Cleft Lip & Palate 23 Cystic Fibrosis 24 Deaf/Blind 24-25 Down Syndrome 25-26 Dwarfism 26 Fetal Alcohol Syndrome 27 Fragile X 27 Genetic Disorders and Birth Defects 27 Hearing Impairments 28 Hydrocephalus & Spina Bifida 29 Hyperlexia 29 Juvenile Diabetes 29 Language/Speech Disorders 30-31 Learning Disabilities 31-32 Leukodystrophy 32 Lowe Syndrome 32 Mental Retardation 32 Muscular Dystrophy 32-33 Paralysis and Spinal Cord Injury 33 Prader-Willi Syndrome 33 Rare Disorders 34 Rett Syndrome 34 Seizure Disorders 34-35 Spinal Muscular Atrophy 35 Tourette Syndrome 35 Tuberous Sclerosis 36 Vision Impairments 36-37 Williams Syndrome 37 Government Federal Register - U.S. Department of Education Announcement www.Ed.Gov/Legislation/Fed Register/ Provides a choice of the U.S. Department of Education documents to be viewed. Federal World Home Page www.fedworld.gov/#hletr Provides a way to search within the government for reports and information GPO Access www.gpoaccess.gov/database s.html Provides a link to search different departments of government HHS Agencies www.hhs.gov/agencies Home page for the office of Health and Human Services IDEA Practices www.ideapractices.org Resource rich and highly interactive website that provides service providers and local administrators with information and support for IDEA- related concerns, issues, and strategies; also provides links Social Security Online www.ssa.gov/SSA_Home.htm l Provides information about social security U.S. Dept of Education www.ed.gov Home page for the U.S. Department of Education U.S. Federal Government Agencies www.lib.lsu.edu/gov/fedgov. html U.S. Federal Government agencies directory Laws concerning Disability Americans with Disabilities Act (ADA) handicap.bfn.org/public/ada. html Library directory of topics on the Americans with Disabilities Act Fape Solutions http://fapesolutions.com/Let ters/SelectLetter.asp Provides information on the IEP, including state regulations and a resource center wih IEP links Laws Affecting Children with Special Needs www.lrp.com/Fed.htm Site comprised of a listing of materials and directories around issues of law available for order National Center for Dissemination of Disability Research(NCDDR) www.ncddr.org/index.html Provides information on research in the area of children with disabilities and collaboration between federal agencies Office of Civil Rights – Department of Education www.ed.gov/about/offices/li st/ocr/index.html Homepage for the Office of Civil Rights that provides information on the law, recent publications, and links to related sites The Consortium for Citizens with Disabilities (CCD) www.c-c-d.org Homepage that discusses the organization and provides information on recent news about disabilities IDEA ‘97 www.ed.gov/offices/OSERS/ IDEA/index.html Provides information on the Individuals with Disabilities Education Act Finance Issues Center for Medicare and Medicaid Services www.cms.hhs.gov Information on Medicare, Medicaid, and Child Health insurance Social Security Benefits for Children with Disabilities www.ssa.gov/SSA_Home.htm l Article discussing social security benefits for children with disabilities (government publication) The Finance Project www.financeproject.org National initiative to create knowledge and share information that will lead to the improved well-being of children, families, and communities Early Intervention/Early Childhood Child Development Media, Inc. www.childdevmedia.com Provides a listing of videos and training materials produced by leading behavior specialists, available for purchase Division of Early Childhood www.dec-sped.org Provides information on conference, government actions, links, and publications Early Intervention Related Links www.dec- sped.org/usefullinks.html Links to sites related to Early Intervention, children with special needs and their families. Information dealing with policy, research, and services included I.E.P www.ldonline.org/Id_indepth /iep/iep.html Provides information about the Individualized Education Plan and what they mean to the family and child- This also discusses a lot about learning disabilities The Hanen Early Language Program www.hanen.org Provides information about the program concerning language delay and updates of research- Also provides links and materials available for purchase Transition Allen, Shea, and Associates www.allenshea.com Professional services in the area of planning, research, training, materials development, and evaluation within the field of human services emphasizing developmental disabilities Preparing Children with Disabilities for School kidsource.com Go to search type in “transition for children with disabilities” Article with information on how government supports readiness, special problems faced during transition, family role, teacher’s role, elements of successful transition, transition timeline Advocacy ARC of the US www.thearc.org National organization of and for people with mental retardation and related disabilities and their families; resources, publications, FAQ’s, and links Children Now www.childrennow.org Group working to advocate for children and families. Provides information about the organization, articles, resources, newsletter, and links to other resources Children's Defense Fund (CDF) www.childrensdefense.org Provides valuable information about the children’s population in the U.S. and articles on several issues, also a Parent Resource Network Family USA Foundation: The Voice for Health Care Consumers www.familiesusa.org Provides information about the organization, publications, and child health Family Voices www.familyvoices.org Provides information sheets, publications, resources, and listing of their current projects; also available in Spanish National Association of Protection and Advocacy Systems (NAPAS) www.protectionandadvocacy. Com Contains references to training, material, and resources of value to disability advocacy organizations Parent & Family: Information and Support Baby Place: The internet Parenting Resource www.baby-place.com Provides information on pregnancy and birth, parenting, products and services, and general parent concerns Beginnings for Parents of Children who are Hard of Hearing beginningssvcs.com Help parents be informed, empowered, and competent so they can be knowledgeable decision makers California Childcare Health Program http://www.ucsfchildcarehea lth.org Support in achieving healthy and safe practices in child care settings Children’s Liver Alliance www.livertx.org Provides link to CenterSpan support site for parents dealing with transplants Children’s Disabilities Information www.childrensdisabilities.info Resource guide for children’s disabilities. Information empowering parents of children with special needs Chromosome Deletion Outreach Chromodisorder.org/index. html Support group for families dealing with children with chromosome concerns Circle of Inclusion http://www.circleofinclusion. org Offers demonstrations of and information about the effective practices of inclusive educational programs for children from birth through age 8 Contact Information www.seliger.com Provides grant writing services Family Internet Home Page www.familyinternet.com Provides information on many areas for families and individuals in general Our Kids www.our-kids.org Site dedicated to raising children with special needs Parent News www.parent.net Provides facts, articles, movies, resources, and books Parent’s Rights and Responsibilities www.ldonline.org/Id_indepth /parenting/parentrights.html Parent Brochure – Rights and Responsibilities of parents of children with disabilities Parents Place www.parentsplace.com Discusses pregnancy, health, family, work, and chat is available Reference Circular Parents’ Guide to the Development of Preschool Children with Disabilities: Resources & Services www.loc.gov/nls/reference/ circulars/parents.html Wide range of information to assist in promoting the development of a child with disabilities from infancy to age 5. Listing of organizations, producers, and distributors who offer materials or services, also a listing of books Special Child Magazine www.specialchild.com/ index.html Online publication dedicated to parents of children with special needs Support for Families of Children with Disabilities http://www.supportforfamili es.org Offer information, education, and parent-to-parent support Sibling Relationships Children with Disabilities: Understanding Sibling Issues (NICHY) Ldonline.org Go to search and type in “siblings” Article on sibling issues Kids N' Sibs www.ggw.org/freenet/k/kns/ index.html Provides an online newsletter for siblings of children with disabilities, off-line newsletter also available The Sibling Support Project www.thearc.org/siblingsuppo rt/index.htm Provides general information for siblings of all ages of children with special needs, resources, education, information on sibshops Technology Alliance for Technology Access www.ataccess.org Provides information on assistive technology centers, books, facts, and vendors Applied Science and Engineering Labs www.asel.udel.edu Gives information on terms, devices, and types of equipment, also links to other resources Assistive Technology devices and Services interact.uoregon.edu/wrrc/ IDEAATech.html Information on IDEA amendments affecting assistive technology Center for Computer Assistance to the Disabled www.c-cad.org Provides information on the organization and topics on computer assistance, information, referral, and links available Delaware Assistive Technology Initiative (DATI) www.asel.udel.edu/dati Discusses assistive technology help for people and children in Delaware, newsletter available Adaptive Toys AdaptiveMall.com www.adaptivemall.com Assistive technology and adaptive devices at discount for children and youth with disabilities; full line of toys and games as well as many other categories of assistive devices Family Village – Adaptive Toys www.familyvillage.wisc.edu/at /adaptive-toys.html#info Provides a listing of resources and vendors surrounding adaptive toys Kaplan www.kaplanco.com Building activities, game boards, balloon kits, balls, etc. Four categories to choose catalogs from: exceptional children, early childhood, outdoor classroom, and math, science, technology & more TFH (USA) LTD www.tfhusa.com Line of unique, adapted toys and products for children and adults with special needs The Dragonfly Toy Company www.dragonflytoys.com For children with special play needs; online catalog and tips Adaptive Clothing Ability Apparel www.ableapparel.com Adaptive clothing to meet the special needs of children Special Clothes, Inc. www.special-clothes.com Adaptive clothing for children with disabilities, helping boys and girls with special needs meet the world with pride and confidence Stitches from the Heart www.stitchesfromtheheart.c om/home.html Specializes in adaptive clothing for children with disabilities. Adaptive Equipment Enabling Devices www.enablingdevices.com Exceptional Products for Exceptional People Flaghouse FlagHouse.com Provides a one-stop shopping experience Haverich www.haverich.com Wide variety of Orthopaedic Cycles Mealtimes www.new-vis.com A resource for oral-motor, feeding, and mealtime programs Activities Alternative Leisure Company www.alctrips.com Provides information about trips and camps for children with disabilities Special Olympics www.specialolympics.org Program of sports training and competition for individuals with mental retardation The American Camping Association www.acacamps.org Provides a way to search the country for camps according to need Entertainment Disability Center www.disabilitycentral.com Click on Active Teen DC Active teen is managed by and for teens with disabilities. We are an online cyber community where we can socialize, educate one another and just have fun together. Lycoszone Lycoszone.Lycos.com Light-hearted website that focuses on youngsters and teens. National Disability Organizations Association of University Centers on Disabilities www.aucd.org Provides information about organizations for people with disabilities, legislation, special projects, resources, membership, and links American Association on Mental Retardation www.aamr.org Provides information on careers, publications, conferences, etc. American Society for Deaf Children www.deafchildren.org Providing a link between those with experiences to share and people seeking answers; services, resources, and links American Speech- Language-Hearing Association www.asha.org Provides information for professionals, students, and consumers ARC of the US www.thearc.org National organization of and for people with mental retardation and related disabilities and their families; resources, publications, FAQ’s, and links Association of Birth Defect Children, Inc. www.birthdefects.org National clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities Council for Exceptional Children www.cec.sped.org Provides information about membership, legislation, publications, etc. Federation of Families for Children's Mental Health www.ffcmh.org National parent-run organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families National Academy for Child Development www.nacd.org International organization of parents and professionals dedicated to helping children and adults reach their full potential. Articles, research, resources, products, and programs National Alliance for the Mentally Ill www.nami.org Leading advocacy organization dedicated to improving the lives of persons with severe mental illnesses and severe anxiety disorders National Association for the Education of Young Children (NAEYC) www.naeyc.org Nation's largest organization of early childhood professionals and others dedicated to improving the quality of early childhood education programs for children birth through age eight National Council on Disability www.ncd.gov Independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities National Cystic Fibrosis Foundation www.cff.org Resource of information on Cystic Fibrosis; research, facts, publications, and news National Early Childhood Technical Assistance System www.nectas.unc.edu National Technical Consortium working to support states, jurisdictions, and others to improve services and results for young children with disabilities and their families National Easter Seal Society www.seals.org Non-profit, community-based health agency dedicated to helping children and adults with disabilities attain greater independence National Health Information Center www.health.gov/nhic Health information referral service National Information Center for Child and Youth with Disabilities(NICHCY) www.nichcy.org National information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals, available in Spanish National Institute of Mental Health www.nimh.nih.gov Mental health research organization; valuable information on specific mental disorders, diagnosis, and treatment (also in Spanish) National Institute on Disability & Rehabilitation Research www.ed.gov/about/offices/li st/osers/nidrr/index.html Provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities National Mental Health Association www.nmha.org Dedicated to improving the mental health of all individuals and achieving victory over mental illnesses National Federation of the Blind www.nfb.org Organization of parents and friends of blind children reaching out to each other to give vital support, encouragement, and information National Organization on Disability www.nod.org Only National disability organization concerned with all disabilities, all age groups, and all disability issues National Parent Network on Disabilities www.npnd.org Provide a presence and national voice for ALL families of children, youth and adults with disabilities National Transition Alliance for Youth with Disabilities (NTA) www.dssc.org/nta/html/ index_2.htm Promotes the transition of youth with disabilities toward desired post-school experiences, including gainful employment, post-secondary education and training, and independent living Office of Special Education & Rehabilitation Services (OSERS) www.ed.gov/about/offices/li st/osers/osep/index.html Supports programs that assist in educating children with special needs, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities Office of Special Education Programs (OSEP) www.ed.gov/offices/OSERS/ OSEP/index.html Their mission and organization focus is on the free appropriate public education of children and youth with disabilities from birth through age 21 Research & Training Center on Family Support & Child Mental Health www.rtc.pdx.edu Activities focus on improving services to families whose children have mental, emotional or behavioral disorders through a set of related research and training programs General Disability Sites Cornucopia of Disability Information (CODI) http://codi.buffalo.edu Information on disabilities including statistics, directories, databases, etc. Internet Resources for Special Children www.irsc.org Provides links to the internet about disability areas Institute for Child Health Policy www.ichp.edu Monthly electronic newsletter on Maternal Child Health Community The ARC's Q&A on Respite Care www.thearc.org/faqs/respite .html Information on respite care The Family Village www.familyvillage.wisc.edu/ index.html Global community that integrates information, resources, and communication opportunities on the Internet for persons with disabilities, their families, and those who provide them service and support The JP Das Developmental Disabilities Centre www.quasar.ualberta.ca/ddc/ INDEX.html Containing valuable information and resources in five major areas: inclusive education, violence & disability, developmental disabilities, human ethics, and links by categories; for parents of children with developmental disabilities Zero to Three: National Center for Infants, Toddlers, & Families www.zerotothree.org Goal is to strengthen and support families, practitioners, and communities to promote the healthy development of babies and toddlers; links and resources Specific Disability Sites: ADD/ADHD A.D.D www.cpgs.com/add Treatment and Research Center A.D.D. Clinic www.addclinic.com Diagnosis and treatment of Attention Deficit Disorder ADD (C.H.A.D.D.) www.chadd.org Works to improve the lives of those with ADD/ADHD through education, support, and advocacy ADD/ADHD www.sinbad.net/business/adds Important information regarding the side effects of common medications ADD/ADHD support group www.adders.org Online support group, also provides news, information, research, resources, and links Feingold Association of the United States (FAUS) www.feingold.org Dedicated to increasing awareness of the connection between diet and the symptoms of ADD, ADHD, and learning disabilities National Attention Deficit Association (ADDA) www.add.org Organization that seeks to help people with ADD lead happier, more successful lives through education, research, and public advocacy Ritalin, ADHD, and Diagnosing Children www.breggin.com/ritalin.html Articles through the Center of Psychiatry and Psychology Autism AACAP www.aacap.org/publications/ factsfam/autistic.htm Article on children with autism Autism Network for Dietary Intervention www.autismndi.com Providing help and support for families using a Gluten & Casein Free Diet in the treatment of autism and related developmental disabilities Autism Resources www.vaporia.com/autism Information and index of links regarding the developmental disabilities autism and Asperger's Syndrome Autism Resources in the U.S.A. www.autism-info.com Site providing information on national organizations, resources, and research throughout the United States. Selection of state can be made Autism Society of America www.autism-society.org Mission is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism Autism Videos www.autism.com/cont_ed_prog Provides information on videos for sale Autism-PDD (Pervasive Developmental Disorder) Network autism-pdd.net Information guide dedicated to autism spectrum disorders Center for Study of Autism (CFA) www.autism.org The Center provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions. Much research is in collaboration with the Autism Research Institute in San Diego, California. Community Services for Autistic Adults & Children (CSAAC) www.csaac.org Private, non-profit organization that offers services to individuals with autism Cure Autism Now (CAN) canfoundation.org Dedicated to promoting and funding research with direct clinical application for treatment of autism FEAT www.feator.org Families for Early Autism Treatment of Oregon providing resources, links, newsletter, and parent guide Future Horizons www.futurehorizons- autism.com Provides information on videos, books, publications, and conferences; links and newsletter Other sites www.autism.org/links.html List of internet resources and links concerning autism TEACCH www.teacch.com Treatment and education of autistic and related communication handicapped children The Autism Channel www.autismchannel.net Provides chat, information, and support to parents with children with autism or related disorders The Autism Society of Delaware www.wserv.com/delautism Families and friends of individuals with autism providing education, advocacy, and public awareness throughout Delaware Asperger’s Syndrome ASPEN – Asperger Syndrome Education Network, Inc. www.aspennj.org Education about issues, support, and advocacy Asperger’s Syndrome Collation of the US www.asperger.org Provides support and information to parents of children with Asperger’s and related disorders Asperger’s Syndrome www.wpi.edu/~trek/aspergers .html Information about the disorder, internet resources and support networks, and reading lists Asperger’s Syndrome www.autism-society.org go to search and type in “asperger’s syndrome” Answers to frequently asked questions, resource list OASIS www.udel.edu/bkirby/ asperger On-line Asperger’s syndrome Information and Support Welcome to A.S.P.I.E. Asperger’s Syndrome Parent Information Environment www.aspie.com Provide support and information, share personal experiences Bone Disorders Fibrous Dysplasia www.methodisthealth.com/ use search engine “A to Z” Information about the disease Osteogenesis Imperfecta www.healthlinkusa.com/ 231.html Links to websites which may include treatment, cures, diagnosis, prevention, support groups, risk factors, research, and more Osteogenesis Imperfecta Foundation www.oif.org General information, links, and support; Free subscription to newsletter Brain Injury Brain Injury Association, Inc. www.biausa.org Comprehensive web site for persons with brain injury and their families; state offices, resources in various media, treatment and rehabilitation, National Directory Brain Injury Association of Kentucky www.braincenter.org An information gateway regarding acquired brain injury Brain Injury Guide members.aol.com/bigkate4/ big.htm Personal page providing information, story, and links Brain Injury Information Network tbinet.org Statistics, coma information, email support groups, resources and links Brain-Net www.btinternet.com/~brain. net/ International Consultancy in child development; U.K. site about brain injury available in English, Dutch, and Italian Coma Waiting Place www.waiting.com Directed to those who are waiting while someone is in a coma, information about brain injury, resources, and support The Perspectives Network (TPN) www.tbi.org Focuses to communicate public awareness and knowledge of acquired brain injury Traumatic Brain Injury Model Systems www.tbindc.org Links to publications, a database, news, the center for outcomes measurement, and other areas Cerebral Palsy CP: Resource Center www.twinenterprises.com Provides answers to FAQ’s, a book list, and resources Cerebral Palsy www.comeunity.com In children: articles and resources for parents How Can I Help? www.iinet.com.au/~scarffam/ cpa.html Information for friends and relatives of a child with cerebral palsy NICHCY- General Information about Cerebral Palsy www.kidsource.com/NICHCY/ cerebral_palsy.html General information about Cerebral Palsy including definition, incidence, characteristics, educational implications; and a list of resources and organizations United Cerebral Palsy Association (UCPA) www.ucpa.org Seeks to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities Cleft Lip & Palate Cleft Lip and Palate Surgery www.plasticsurgery.org/publice ducation/procedures/index Plastic surgery information Cleft Lip an Palate Association www.clapa.com Provides articles, education, support and feeding tips Cleft Lip Palate Foundation www.cleftline.org Education, news, support, health care for cleft palate. Website also in Spanish Cleft Lip/Cleft Palate: Internet Resources www.samizdat.com/#cleft List of articles with links International Institute for Birth Defects www.cleft.net/info Information, support, research, and prevention on Cleft Lip/Palate Kid’s Health/Cleft Lip and Palate http://kidshealth.org/parent/ medical/ears/cleft_lip_palate. html Articles addressing treatment, dental care and available therapy. Wide Smiles www.widesmiles.org Support, inspiration, information, and networking for families dealing with the challenges associated with clefting Cystic Fibrosis CF.com www.cysticfibrosis.com Provides support, resources, and information Cystic Fibrosis – Doctor’s Guide to the Internet www.pslgroup.com/CF.htm The latest medical news and information for patients or friends/parents of patients diagnosed with Cystic Fibrosis and related disorders Cystic Fibrosis Care www.cfcare.com Provides people with cystic fibrosis, family members, and the CF community with quick and easy access to education, information, and breaking stories on the latest treatments and issues Cystic Fibrosis Foundation www.cff.org Resource of information Cystic Fibrosis Research, Inc. www.cfri.org Information on research in the field Cystic Fibrosis Web Links www.people.virginia.edu/~rh9u /cflinks.html Cystic Fibrosis Weblinks to information Family Guide to Cystic Fibrosis Genetic Testing www.phd.msu.edu/DNA/cf_fa m.pdf Basic information for families Deaf/Blind American Association of the Deaf-Blind www.tr.wou.edu/dblink/aadb.ht m National consumer advocacy organization for people who have combined hearing and vision impairments Boys Town National Research Hospital- Center for Hearing Loss in Children www.babyhearing.org Deaf/Blind Online www.ssco.esu.k12.oh.us/dblinks .html Provides technical assistance to families, educational personnel, and other service providers through training efforts and the dissemination of information on innovative approaches to educating children and youth with dual-sensory impairments Helen Keller National Center for Deaf/Blind Youth www.helenkeller.org/national Provides state resources, links, and publications National Information Clearinghouse on Children who are Deaf/Blind www.tr.wou.edu/dblink Provides links, state resources, databases, and publications National Technical Assistance Consortium for Deaf/Blind www.tr.wou.edu/ntac Provides statistics and workshop information Down Syndrome Assoc. for Children with Down Syndrome(ACDS) www.acds.org Provides facts, support, and resources Breastfeeding a Child with Down Syndrome www.breastfeeding.asn.au/bfin fo/down.html Information on this subject Facts on Breastfeeding And Down Syndrome http://www.lalecheleague.org/ FAQ/down.html Topics of interest to parents of breastfed children with down syndrome Diagnosis Down Syndrome Leeworks.net/DDS Personal site with stories dedicated to parents Down Syndrome Health Issues www.ds-health.com Provides essays about children with down syndrome for other parents written by a pediatrician and father Down Syndrome Online Advocacy Group www.dsoag.com Scientific and educational effort aimed at utilizing the communication power of the Internet to increase public understanding and support for clinical and biomedical research into Down syndrome Down Syndrome WWW page nas.com/downsyn English, Spanish, and French speaking site that provides articles, essays, snapshots, links, information, and resources Down Syndrome-A Parents Resource www3.sympatico.ca/terry. edwards/Shelby.html Parent site with personal stories, photos, and resources DownsCity www.downscity.com Provides a directory, mailing lists, resources, and links DownsNet www.downsnet.org Contains information on research, a library, and services on Down Syndrome Growth Charts for Children with Down Syndrome www.growthcharts.com/ charts/DS/charts.htm Growth charts for children with Down Syndrome National Association of Down Syndrome www.nads.org Not-for-profit organization providing information and understanding National Down Syndrome Congress www.ndsccenter.org/ National advocacy group that provides leadership in all areas related to persons with down syndrome National Down Syndrome Education and Research Institute www.downsyndrome.com Instructional videos available and links National Down Syndrome Society www.ndss.org Assists families in addressing needs of children born with down syndrome and sponsors and encourages scientific research Recommended Down Syndrome Sites www.ds-health.com/ ds_sites.htm#natl Links to internet sites Down Syndrome on the Internet www.Downsyndrome.com Includes government resources, educational resources, medical information and resources, support groups, newsletters, and valuable links The Lighter Side of Down Syndrome www.geocities.com/Heartland/ Hills/3153/dsmain.html Personal site with stories and resources UPSIDE www.telebyte.net/upside/ upside.html Informal society of individuals, parents, and friends Dwarfism Dwarfism.org www.dwarfism.org Centralized dwarfism resources Human Growth Foundation www.hgfound.org Helps individuals with growth related disabilities, their families, and health care professionals by providing education, research, and advocacy Little People of America www.lpaonline.org Provides support and information to people of short stature and their families. Resources, data, and links Fetal Alcohol Syndrome Alcohol Related Birth Injury – Fetal Alcohol Syndrome www.arbi.org Offers educational research and legal resources for the prevention and treatment of alcohol-related birth injuries Fetal Alcohol Syndrome www.come-over.to/FAS Provides a wide range of information including resources and links Fetal Alcohol Syndrome Family Resource Institute – FAS www.fetalalcohol.syndrome.org Non Profit Organization offers support groups, prevention programs, and information about this condition. Membership details included National Organization on Fetal Alcohol Syndrome www.nofas.org General information of FAS Fragile X FRAXA Research Foundation www.fraxa.org Provides current information and links National Fragile X Foundation www.nfxf.org Gives general information, resources for families, and links Genetic Disorders and Birth Defects Association of Birth Defect Children, Inc (ABDC) www.birthdefects.org Provides free phone information, written materials, special reports and newsletters to parents and professionals March of Dimes Birth Defect Foundation www.marchofdimes.org Organization that focuses on the birth of healthy babies The Genetic Alliance www.geneticalliance.org Find a support group, useful resources, newsletters, and publications The Teratology Society www.teratology.org Site that provides information on birth defects, research, and prevention Hearing Impairments Alexander Graham Bell Assoc. for the Deaf www.agbell.org Nonprofit membership organization that was established in 1890 to empower persons who are hearing impaired; information, provider & support network American Speech- Language-Hearing Association (ASHA) www.asha.org Promote interests of and provide the highest quality services for professionals in audiology, speech- language pathology, and speech and hearing science, and to advocate for people with communication disabilities Captioned Films/Videos Program www.cfv.org Provides open-captioned films and videos, free for loan, for deaf and hard- of –hearing persons, teachers, organizations, and parents Closed Captioning Web www.captions.org Information on closed captioning services, law and links Hand Speak: A sign language dictionary online www.handspeak.com Visual language dictionary online. I See What You Say www.lipreading.com Concerned with speech-reading skills, video with manual available National Association of the Deaf www.nad.org Safeguards the accessibility and civil rights of 28 million deaf and hard of hearing Americans in a variety of areas National Institute on Deaf & other Communication Disorders (NIDCD) www.nih.gov go to search and type in “NIDCD” Mission is to uncover new knowledge that will lead to better health for everyone- Provides information on current research Phonic Ear www.phonicear.com Leading developer and manufacturer of assistive listening devices, products, tools, and links The Deaf Resource Library www.deaflibrary.org Collection of reference material and links to educate and inform people about deaf cultures in Japan and the U.S. Where do we go from Hear? www.gohear.org/index.html Provides information for families of infants and children diagnosed with hearing loss and professionals who work with these individuals Hydrocephalus & Spina Bifida Children with Spina Bifida http://www.waisman.wisc.edu/ ~rowley/sb-kids/index.html Resource page for parents and professionals Hydrocephalus Association www.HydroAssoc.org Provides support, education, resources, and advocacy Hydrocephalus Center www.patientcenters.com Provides articles and resources Spina Bifida Association of America www.sbaa.org Provides toll free information & referral services, newsletter, publications, and links The Hydrocephalus Foundation, Inc. (HyFI) www.hydrocephalus.org Dedicated to providing support, resources, and networking opportunities Hyperlexia American Hyperlexia Association Home Page www.hyperlexia.org Provides basic information and links Hyperlexia and Language Disorders www.geocities.com/ HotSprings/9402/ Provides articles and links Hyperlexia Parents Page Westwingpublishing.com/ hyperlexia Information for parents with personal stories, articles, and chat available Juvenile Diabetes Juvenile Diabetes Foundation International – The Diabetes Research Foundation www.jdf.org Research, publications, chapters, and advocacy National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) www.niddk.nih.gov Information on health, programs, research, and FAQ’s Diabetic Gourmet http://diabeticgourmet.com/ Healthy_Living/Juvenile_Diab etes/ Provides parents of children with juvenile diabetes articles, resources, news and recipes Language/Speech Disorders American Speech- Language-Hearing- Association (ASHA) www.asha.org Promotes interest of services for professionals and people advocating for people with communication disorders Apraxia Kids www.apraxia- kids.org/index.html Provides information and how apraxia affects families and children, links and support groups Born Learning http://www.bornlearning.org/ Supports families with children who are late talkers Children Learning Language-How Adults Can Help http://www.childdevmedia.co m/highlight2.cfm?product_id =411 In this video Naomi Baron guides viewers along a child's journey from babbling to complex sentences Enhancing Communication Skills Through Reactive Language Strategies http://www.childdevmedia.co m/highlight2.cfm?product_id =369 Video provides the viewer with strategies that can be used to help children improve their communication skills Hanen Resources http://www.childdevmedia.co m/highlight2.cfm?product_id =370 Committed to helping children communicate to the best of their abilities and to providing parents, caregivers and teachers with knowledge and support to make this a reality KidsEars www.kidsears.com/kidspeak.ht ml Provides listing of milestones and suggestions Kidsource Online: Spoken Language Problems www.kidsource.com/LDA/ spoken_language.html Basic explanation of oral language disorders Language is Key http://www.wri- edu.org/bookplay/ Educational program that shows parents and teachers how to promote children's language development during the preschool years. Program includes the following components: Talking and Books (VHS 20+ minutes), Talking and Play (VHS 20+ minutes), Resource Guide with handouts Learning to Communicate: The First Three Years http://www.childdevmedia.co m/highlight2.cfm?product_id =398 Videotape illustrates the milestones of normal communication development in the first three years of life Making the Most of Early Communication http://www.childdevmedia.co m/highlight2.cfm?product_id =406 Video emphasizes the importance of making use of the child's available senses, using familiar routines and turn taking games, and using systematic and direct instruction for encouraging communication Medline Plus www.nlm.nih.gov/medlineplus/ aphasia.html Promotes public education, research, rehabilitation and support services to assist families National Institution of Deafness and Other Communications Disorders http://www.nidcd.nih.gov/ Provides facts, research, resources, news and events related to communication disorders Parents as Teaching Partners http://www.edact.com/produc t.cfm?c_id=82&p_id=529&pat h=-1,1,82 easy-to-do, low-cost activities that teachers can suggest to parents Speech and Language Delays: What Do They Mean for Your Child? http://www.childdevmedia.co m/highlight2.cfm?product_id =399 Videotape briefly outlines the development of communication skills in the first three years of life Speech and Language Disorder www.mankato.msus.edu/dept/ comdis/kuster2/splang.html Provides listing of sites related to speech and language disorders Successful Language Development Strategies in the Early Childhood Classroom http://www.edact.com/produc t.cfm?p_id=528&path=-1 For English Language Learners and Native Speakers-successful language development techniques Talking Together: The Movie http://www.childdevmedia.co m/highlight2.cfm?product_id =368 Video demonstrates how to focus on and take advantage of the natural uses of language Learning Disabilities Essential Learning Institute www.ldhope.com Information on LD with audio introduction option LD Online www.ldonline.org/index.html Interactive guide to learning disabilities for parents, teachers, and children Learning Disabilities Association of America www.ldanatl.org Dedicated to enhancing quality of life, alleviating restricting effects, and supporting endeavors to determine causes of learning disabilities Learning Disabilities Clinic www.slam.nhs.uk/services/pag es/detail.asp?id=417 Private educational treatment facility for children, adolescents, and adults, dedicated to helping individuals achieve their full learning potential. National Center for Learning Disabilities www.ncld.org Provides information, resources, referral services, public awareness, advocacy and more Special Kids www.specialkids1.com Reaching and teaching kids with disabilities through videos, CD-Roms, and picture books The Learning Center learningcenteronline.com Information about testing and enrichment, Educational and counseling services to children and adults Leukodystrophy United Leukodystrophy Foundation www.ulf.org Dedicated to providing patients and their families with information and support, increasing public awareness, and promoting and supporting research Lowe Syndrome Lowe Syndrome Association www.lowesyndrome.org Basic information and links Mental Retardation American Association on Mental Retardation www.aamr.org Promotes global development and dissemination of progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities Best Buddies www.bestbuddies.org A nonprofit organization dedicated to enhancing the lives of people with mental retardation by providing opportunities for socialization and employment National Center for Birth Defects and Developmental Disabilities www.cdc.gov/ncbddd/dd/ddm r.htm Answers the question what is mental retardation? The ARC www.thearc.org Organization committed to the welfare of all children and adults with mental retardation and their families Muscular Dystrophy Muscular Dystrophy Association www.mdausa.org Information on research, services, publications, and clinics Muscular Dystrophy Family Foundation www.mdff.org Provides services, resources, home medical equipment and adaptive devices to help people with muscular dystrophy and their family members live independent and productive lives Muscular Dystrophy Parent Project www.parentprojectmd.org/ Provides a network of communications, support for parents and children, and information on the disease, treatment, care, and conferences Paralysis and Spinal Cord Injury American Paralysis Association www.apacure.com Information on news, research, publications, discussion, and events related to spinal cord injury and paralysis National Spinal Cord Injury Association www.spinalcord.org Improving care, producing results in research, and addressing everyday living issues that confront all people in wheelchairs Spinal Cord Injury Resources www.makoa.org/sci.htm Links containing general resources, newsletters, articles, and fact sheets WheelWeb.Com: The Spinal Cord Injury Resource www.wheelweb.com Purpose is to educate people about SCI and advance the lives of those who have it Prader-Willi Syndrome GeneClinics www.geneclinics.org/profiles/ pws Basic information on the disorder PedBase- Doctor’s Guide www.pslgroup.com/dg/200c2. htm Basic information on the disorder Prader-Willi Syndrome Association www.pwsausa.org Information on organizations, FAQ’s, research, brochures, and support Rare Disorders National Organiation for Rare Disorders(NORD) www.rarediseases.org Committed to the identification, treatment, and cure of rear disorders through programs of education, advocacy, research, and service; newsletter, and search databases Genetic/Rare Conditions Support Groups & Information Site www.kumc.edu/gec/support/ groups.html Allows for a search of support groups according to disability; information on genetic conditions or birth defects for professionals, educators, and individuals Rare Genetic Diseases www.familyvillage.wise.edu/lib _gene.htm Who to contact, make connections with other families, and related websites Rett Syndrome International Rett Syndrome Association (IRSA) www.rettsyndrome.org Purpose is to support and encourage medical research, determine the cause and find a cure for Rett syndrome, to increase public awareness, and to provide informational and emotional support to families; available in French, Dutch, Italian, Portuguese, and Spanish Seizure Disorders American Epilepsy Society www.aesnet.org Promotes research and education for professionals dedicated to the prevention, cure, and treatment of epilepsy Lycoszone Lycoszone.Lycos.com Go to search and type in “epilepsy” Light-hearted website that focuses on epilepsy and seizure disorders for youngsters and teens. Epilepsia www.epilpsia.com Official journal of The International League Against Epilepsy (on-line journal) Epilepsy Contact Database www.datasync.com/~josw/ epilepsy.htm A database of families and bookstore developed to unite and educate those affected by and afflicted by epiliepsy Epilepsy Foundation of America www.efa.org Provides information on advocacy, services, publications, research, etc. Epilepsy International www.epilepsy_international.co m/ Provides a large, comprehensive and well-designed educational and informational resource for those working with and/or dealing with epilepsy on a day-to-day basis in English and Spanish language Parent Site Kisepilepsy.com Support platform for parents and other caregivers of children The Epicenter http://137.172.248.46/epilep sy.htm Provides basic information and answers FAQ’s Spinal Muscular Atrophy Families of Spinal Muscular Atrophy www.fsma.org Provides information, resources, research articles, membership information, photos, and links Spinal Muscular Atrophy www.mda.org.au/specific/mda sma.html Fact sheet on spinal muscular atrophy Tourette Syndrome The Facts about Tourette Syndrome Members.tripod.com/ ~tourette13 A collection of general information, FAQ’s, causes, related problems, and links Guide to the Diagnosis & Treatment of Tourette Syndrome www.mentalhealth.com/book/ p40-gtor.html Booklet intended to provide information to professionals who wish to become more knowledgeable about Tourette Syndrome National Tourette Syndrome Association www.tsa-usa.org National organization dedicated to providing up-to-date, accurate information about Tourette Syndrome TS "Plus" www.tourettesyndrome.net Current research and information on TS, its treatment, and educational issues. Files for parents, educators, and health care professionals to download Tuberous Sclerosis Global TS Information Link (GTSIL) www.edae.gr/tuberous.html Provides information about TS and the organization with a bookstore, newsletter, and links National Tuberous Sclerosis Association www.tsalliance.org Provides information about TS, the organization and gives resources and parent support National Tuberous Sclerosis Association- Brochure- My child has Tuberous Sclerosis www.tsalliance.org/publication s/52810_NTSA.pdf Brochure providing families of children with TS information, education and support Vision Impairments American Council of the Blind www.acb.org Provides general information about the Council, including recent issues of the monthly publication, The Braille Forum American Foundation for the Blind www.afb.org National resource for people who are blind or visually impaired, and the organizations that serve them; information, newsletters, events, on-line journal Art Through Touch Members.aol.com/ATTouch Organization that provides tuition and a range of high quality art activities for blind and visually impaired people Blind Children's Learning Center www.blindkids.org Center that seeks to develop the full potential of children and youth with a visual impairment, in the greater Orange County community, regardless of ability to pay Blindness Resource Center (NYISE) www.nyise.org/blind.htm Provides information on resources for the blind EyeNet - American Academy Of Ophthalmology www.aao.org Public information, resource guide, and on-line education center Microphthalmia, Anophthalmia and other Eye Disorders www.angelfire.com/mi/ microphthalmia Designed to bring families together to share personal stories and experiences, links available National Association for Visually Handicapped www.navh.org Provides a merchandise store, links, resources, excerpts library, and mailing list National Federation of the Blind www.nfb.org Comprehensive consumer and advocacy organization that provides public education, information and referrals Visual Impairment Guide www.viguide.com Guide to internet resources about visual impairments for parents and teachers Williams Syndrome Williams Syndrome Association www.williams-syndrome.org Provides information on the disorder, medical guidelines, resource libraries, and internet links Williams Syndrome Foundation www.wsf.org Provides basic information, personal stories and photos, information on organizations, and contact with families Updated and revised By Connie Luciani Summer 2001 Updated and revised By Sara Buffone Fall 2003 12 38