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United Cerebral Palsy Association
http://www.ucpa.org
UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, UCP's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities.Spina Bifida and Folic Acid and other Dietary Supplements
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5113a1.htm
Articled titled Folic Acid and Prevention of Spina Bifida and Anencephaly, found on the Department of Health and Human Services Centers for Disease Control and Prevention.http://www.pregnancy-info.net/folid_acid.html
Covers just about every question men and women have about pregnancy, including what folic acid is and the importance of taking folic acid.Children's Medical Center in Cincinnati
http://www.cincinnatichildrens.org/default.htm
Cincinnati Children's Hospital Medical Center is committed to excellence in family-centered pediatric patient care, life-enhancing research, and professional education.Virtual Fetal Therapy Surgery
http://www.fetal-surgery.com/
A good starting point for information regarding fetal surgery for spina bifida.Wheelchairs and Scooters
http://www.wheelchairnet.org/
WheelchairNet is a community for people who have a common interest in (or in some cases a passion for) wheelchair technology and its improvement and successful application.http://www.abledata.com/
The premier source for information on assistive technology, sponsored by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.Computer Adaptations
http://www.Microsoft.com/enable
To reflect their role as an industry leader and to focus their efforts on the opportunities ahead, Microsoft has embraced a new corporate mission: To enable people and businesses throughout the world to realize their full potential. Microsoft strives to build products that are accessible to everyone, including people with disabilities.http://oscar.ctc.edu/access/resources/accessibility.html
Information and assistive technology information from a variety of sources.DynaVox Technologies
http://www.dynavoxsys.com/
Provides advanced augmentative communication solutions.Get to Know People with Physical Disabilities
http://paws.wcu.edu/westling/publications/Cases/Case12Rommel.htm
Rommel's story listed on the Western Carolina University's Website.Barbara's Classroom
http://www2.edc.org/NCIP/tour/Barbara-class.html
This material was developed by the National Center to Improve Practice (NCIP)
in collaboration with the Center for Literacy and Disabilities (CLD) at Duke University.National Council on Independent Living
http://www.ncil.org
The National Council on Independent Living is a membership organization that advances the independent living philosophy and advocates for the human rights of, and services for, people with disabilities to further their full integration and participation in society.Winners on Wheels
http://www.wowusa.com
WOW empowers kids in wheelchairs by encouraging personal achievement through creative learning and expanded life experiences that lead to independent living skills.The Families and Advocates Partnership for Education
http://www.fape.org
The Families and Advocates Partnership for Education (FAPE) project is a strong partnership that aims to improve the educational outcomes for children with disabilities. It links families, advocates, and self-advocates to communicate the new focus of the Individuals with Disabilities Education Act (IDEA). The project represents the needs of 6 million children with disabilities.AbleNet
http://ablenetinc.com
customerservice@ablenetinc.com
Provides practical information and creative solutions for incorporating assistive technology in teaching students with disabilities.CAST (Center of Applied Special Technology)
http://www.cast.org
A state-of-the-art organization that uses technology to enhance opportunities for all people, including those with disabilities, to have access to universal design for learning.Trace
http://trace.wisc.edu
The Trace Center, located at the University of Wisconsin, conducts interdisciplinary research, development, and training to capitalize on the benefits of technology and increase accessibility.NARIC
http://www.naric.com
NARIC has over 70,000 resources focusing on disability and rehabilitation. They include databases, current awareness bulletins, and calendars of events.RESNA
http://www.resna.org/taproject/index.html
RESNA has a current listing of all the fifty-six state and territory-assistive technology programs as authorized under the Assistive Technology Act of 1998. These projects provide information on the most current state funding.Sample 504 Plans – Diabetes and Action
http://www.k12.wa.us/HealthServices/pubdocs/appendB.pdf
An Individual Health Plan/Section 504 plan form.Human Genome Project and Teratogens
http://teratology.org/
The Teratology Society is a multidisciplinary scientific society founded in 1960; its members study the causes and biological processes leading to abnormal development and birth defects at the fundamental and clinical level, and the appropriate measures for prevention.http://www.nhgri.nih.gov/
The National Human Genome Research Institute led the Human Genome Project
for the National Institutes of Health, which culminated in the completion of the full human genome sequence in April 2003. Now, NHGRI moves forward into the genomic era with research aimed at improving human health and fighting disease.http://www.genome.gov/Pages/EducationKit/
The Human Genome Project (HGP) began in 1990 as an effort by researchers from around the world to map and sequence the human genome—the totality of human DNA—as well as the genomes of important experimental organisms like yeast, the nematode worm, and mouse. In 2000, the collaborators in the HGP announced the completion of a draft revealing 90% of the human sequence and in February 2001, the initial analysis of the human genome sequence was published in the scientific literature. To mark this occasion, the Human Genome Project released a free, multimedia educational kit for high school students and the interested public.Discussion of Section 504, the ADA, and the IDEA
http://www.wrightslaw.com/info/sec504.summ.rights.htm
In this article, you will learn about Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, as contrasted with the Individuals with Disabilities Education Act (IDEA).Special Education Resources on the Internet
http://seriweb.com/
SERI is a collection of Internet-accessible resources of interest to those involved in Special Education and related fields. This collection exists to make online Special Education resources more easily and readily available in one location.http://www.nldline.com/iepinfo.htm
A list of websites that feature the differences between IEPs and 504 plans.American Red Cross CPR Training
http://www.redcross.org/services/hss/courses/
American Red Cross first aid, CPR, and AED programs are designed to give you the confidence to respond in an emergency situation with skills that can save a life. Helps you find courses in your community.How to Handle Bullying and Teasing
http://www.cec.sped.org/bk/cec_today/march_2001/cectoday_03_2001_12.html
"Teaching Social Skills in Inclusive Classrooms" article published in CEC Today, Vol. 7, No. 7, March 2001, page 12.Helping with Grief
http://www.pbs.org/wnet/onourownterms/articles/teacher2.html
PBS website features an article "A Teacher's Guide to Grief".The Grieving Student
http://www.kidsplace.org/char0901.html
This article is found on the Kids' Place website, a grief support center co-founded by Charlotte Burrough and Danny Mize, directors.http://www.dougy.org/
The National Center for Grieving Children and Families gives numerous resources written by on-staff children's grief experts at The Dougy Center.Programs – Kids on the Block
http://www.kotb.com/
The Kids on the Block provides educational puppet programs which enlighten children on the issues of disability awareness, medical-educational differences, and social concerns. The National Office of the Kids on the Block researches and develops relevant and timely program topics for delivery by over 1000 troupes around the world. Kids on the Block has a strong commitment to provide communities with programs that address children's questions, concerns, and needs in a lively and entertaining manner.Starlight Foundation
http://www.starlight.org/
Starlight Children's Foundation is an international non-profit organization dedicated to improving the quality of life for seriously ill children and their families.Kids Health Organization
http://www.kidshealth.org/
KidsHealth is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence.Sickle Cell Information
http://www.sicklecelldisease.org/
Through the years the Association has provided effective leadership in positioning sickle cell disease and its related problems as a major public health care concern and, indeed, a universal problem.Band-Aides and Blackboards: When Chronic Illness or Some Other Medical Problems Goes to School
http://www.faculty.fairfield.edu/fleitas/contents.html
Entertaining site navigates children through dealing with teasing and going through medical procedures. Children share their stories. Suggestions are provided for peers and teachers as well.Cancer Kids
http://www.cancerkids.org/
Stories of children with cancer. Of special interest is the journal kept by one father in Ashley's Story, illustrating the ongoing impact of cancer on the family.Countdown for Kids
http://kids.jdrf.org/
The Juvenile Diabetes Research Foundation provides a website for children with diabetes.Answer Place: The Epilepsy Foundation
http://www.epilepsyfoundation.org/answerplace/index.cfm
Epilepsy Foundation of America offers FAQs, a glossary, and other resources related to epilepsy.EpiNet
http://www.epinet.org.au/
Provides suggestions for talking to children about epilepsy, as well as other helpful resources.
Teaching Individuals with Physical, Health, or Multiple Disabilities (4th ed.). (2001). By June L. Bigge, Sherwood J. Best, & Kathryn Wolff Heller. Upper Saddle River, NJ: Merrill/ Prentice Hall.
This comprehensive textbook describes the impact and implications of physical disabilities, health impairments, and multiple disabilities. It strongly emphasizes curriculum adaptations across academic areas, adaptations for daily living skills and personal independence, and assistive technology.Meeting Physical and Health Needs of Children with Disabilities: Teaching Student Participation and Management. (2000). By Kathryn Wolff Heller, Paula E. Forney, Paul A. Alberto, Morton N. Schwartzman, & Trudy M. Goeckel. Belmont, CA: Wadsworth/Thompson Learning.
This book especially emphasizes physical and management skills for addressing the needs of students with physical disabilities and health needs related to issues such as handling and positioning, lifting and transferring, mobility, eating, and medications. Heavy emphasis is also provided on using medical technology related to ventilator management, oxygen management, and catheterization.Augmentative and Alternative Communication. (1998). By David R. Beukelman & Pat Mirenda. Baltimore, MD: Brookes.
This book consists of three parts, describing augmentative and alternative communication processes, augmentative and alternative communication interventions for individuals with developmental disabilities, and augmentative and alternative communication interventions for individuals with acquired disabilities.Building Communicative Competence with Individuals Who Use Augmentative and Alternative Communication. (1998). J. C. Light & C. Binger. Baltimore, MD: Brookes.
This book details general instructional procedures for building communicative competence and consists of chapters on how to teach and examples of introduction strategies, turn-taking, partner-focused questions, and adaptations of these interventions for other purposes.Caring for Children with Cerebral Palsy: A Team Approach. (1997). By John Paul Dormans & Louis Pellegrino. Baltimore, MD: Brookes.
Written by a team of interdisciplinary authors, this guide provides detailed information from a broad range of issues, including diagnosis, etiology, feeding and nutrition, health management, assistive technology, and medical treatment.Children and Youth Assisted by Medical Technology in Educational Settings: Guidelines for Care (2nd ed.). (1997). Edited by Stephanie Porter, Marilynn Haynie, Timaree Birele, Terri H. Caldwell, & Judith Palfrey. Baltimore, MD: Brookes.
This extremely detailed guide provides practical guidelines and emergency techniques for working with students who use assistive medical technology. In addition to information on specific medical procedures, topics such as transportation, legal requirements, inclusion, and transition are also addressed.Children with Disabilities (5th ed). (2002). By Mark L. Batshaw. Baltimore, MD: Brookes.
This illustrated text describes the characteristics of all major physical disabilities and comprehensive information on developmental, clinical, educational, and family issues related to state-of-the-art care.Living with Spina Bifida: A Guide for Families and Professionals (1997). By Adrian Sandler. Chapel Hill: The University of North Carolina Press.
This is an extremely thorough and readable reference book providing a comprehensive overview of spina bifida. Helpful illustrations and a thorough list of suggested readings are included.Speaking Up and Spelling It Out: Personal Essays on Augmentative and Alternative Communication. (2000). By Melanie Fried-Oken & Hank Bersani. Reston, VA: Council for Exceptional Children.
This anthology of essays by users of AAC covers all kinds of disabilities and the experiences of AAC users in a variety of settings and conditions. It shows how AAC can be used by persons with disabilities and the role of their family and educators in unlocking the communication barriers facing those who need AAC.Spinabilities: A Young Person's Guide to Spina Bifida. (1997). Edited by Marlene Lutkenhoff & Sonya Oppenheimer. Bethesda, MD: Woodbine House.
This book advises teenagers and young adults on four broad topics: health and personal care, relationships, responsibilities of growing up, and wellness.Alex: The Life of a Child. (1984). By Frank Deford. New York: Signet.
Deford shares his daughter's courageous battle with cystic fibrosis.Days of Grace. (1993). By Arthur Ashe & Arnold Rampersad. New York: Ballentine.
The athlete describes his first heart attack at age 16 and his battle with HIV.Death and the Classroom. (1990). By Kathleen Cassini & Jacqueline Rogers. Griefwork of Cincinnati, Inc., 1445 Colonial Drive, Suite B, Cincinnati, OH 45238. (513) 922-1202.
Suggestions teachers and counselors can use to help students cope with death.Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies. (1999). By Janis Silverman. New York: Fairview Press.
An art therapy book for children.How It Feels to Fight for Your Life. (1989). By Jill Krementz. Boston: Little, Brown. Children and teenagers with a variety of health impairments share their stories.
I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise. By Erma Bombeck. (1989). New York: Harper & Row.
Heartwarming stories of children surviving cancer.I Will Sing Life: Voices from the Hole in the Wall Gang Camp. (1992). By Larry Berger, Dahlia Lithwick, & Seven Campers. Boston: Little, Brown.
Children and adolescents with serious illnesses share their celebration of life.Learning How the Heart Beats. (1995). By Claire McCarthy. New York: Viking.
The author describes her training as a pediatrician.On Children and Death. (1983). By Elizabeth Kubler-Ross. New York: Macmillan.
Sensitive and compassionate look at death.Sad Isn't Bad: A Good-Grief Guidebook for Kids Dealing with Loss (1995). By Michealene Mundy.
For 4- to 8-year-olds.Special Children, Special Care. (1993). Edited by Karen Moffitt, John Nackahsi, & John Reiss. USF Bookstores, 4202 East Fowler Avenue, Tampa, FL 33620-6550. (813) 974-2631.
A comprehensive, practical guide for collaboration among professionals and families caring for children who have medically-complex health impairments.The Bully Free Classroom: Over 100 Tips and Strategies for Teachers K–--8. (1999). By Allan L. Beane. Free Spirit Publishing.
Strategies you can use to make a difference for bullies and victims.What to Do. . . When Kids Are Mean to Your Child (What to Do Parenting Guides, Vol. 1). (1997). By Elin McCoy. Reader's Digest Adult.
Based on current research.When a Child Has Died: Ways You Can Help a Bereaved Parent. (1995). By Bonnie Hunt Conrad. Fithian Press.
Practical strategies.Your Child: Bully or Victim? Understanding and Ending Schoolyard Tyranny. (2002). By Peter L. Sheras, Ph.D. New York: Simon & Schuster.
Helpful information for teachers and parents.
Closing the Gap
P.O. Box 68, Henderson, MN 56044
(507) 248-3294
http://www.closingthegap.com
info@closingthegap.com
Bimonthly newsletter about assistive computer technology for persons with disabilities. Includes section on new product reviews.Exceptional Parent: Annual Technology and Products-Services Issue: Resource Guide
P.O. Box 3000, Denville, NJ 07834
To order resource guide: (800) 535-1910
For subscription information: (800) 562-1973
Annual issue provides straightforward information on assistive technology, products, and services.The Networker
United Cerebral Palsy Associations, 330 W. 34th St., New York, NY 10001
(212) 947-5770
Published quarterly to provide affiliate staff, volunteers, and others with a way of exchanging information on best practices and resources.New Mobility
No Limits Communication, Inc., P.O. Box 220 Horsham, PA 19044
(215) 675-9133
http://www.newmobility.com
Monthly magazine with a focus on disability culture particularly related to current information, opportunities for readers to provide their opinions, humor, and classified ads focusing on unused equipment.Augmentative Communication News
Augmentative Communications, Inc., One Surf Way, Suite 237, Monterey, CA 93940
(408) 649-3050
Newsletter published bimonthly covering consumer issues, equipment, research, clinical news, and governmental affairs related to augmentative communication.Death and Grief Bibliography
Good Morning, Juanita Johnson,
12 Locust Street, Norwich, NY 13815.
(607) 336-8457.
Extensive book list for children, teens, parents, and professionals.Straight Talk: A Magazine for Teens
The Learning Partnership
P. O. Box 199, Pleasantville, NY 10570.
(914) 769-0055.
Motivational activities and articles help students with disabilities build self-esteem, resist peer pressure, and avoid sexually-transmitted diseases.
Muscular Dystrophy Association
3300 East Sunrise Drive, Tucson, AZ 85718
(800) 572-1717
http://www.mdausa.org
mda@mdausa.org
A national association, composed of scientists and concerned citizens, aimed at conquering neuromuscular diseases through research and education.National Multiple Sclerosis Society
733 Third Avenue, New York, NY 10017
(800) 344-4807
http://www.nmss.org
A national multiple sclerosis organization dedicated to ending the devastating effects of multiple sclerosis.Spina Bifida Association of America
4590 MacArthur Boulevard NW, Suite 250, Washington, DC 20007
(202) 944-3295
http://www.sbaa.org
sbaa@sbaa.org
A national association committed to the prevention of spina bifida and to the enhancement of the quality of life of everyone affected by it.United Cerebral Palsy
1660 L Street, NW, Suite 700, Washington, DC 20036
(800) 872-5827
http://www.ucpa.org/
A nationwide network of approximately 111 affiliates that work to advance the independence, productivity, and full citizenship of people with cerebral palsy and other disabilities.See Exceptional Parent, 24 (1) (January 1994) for a complete listing of national organizations, associations, products, and services for individuals with specific health impairments. Several of the following organizations also publish newsletters. Many of these organizations have websites.
Asthma and Allergy Foundation of America
1125 Fifteenth Street NW, Suite 502, Washington, DC 20005
(800) 727-8462Candlelighters Childhood Cancer Foundation
American Cancer Society, 1599 Clifton Road NE, Atlanta, GA 30329-4251
(800) 366-2223Center for Children with Chronic Illness and Disability
Box 721-UMHC, Harvard St. at East River Rd., Minneapolis, MN 55455Centers for Disease Control
1600 Clifton Rd. NE, Atlanta, GA 30333
Information about specific diseasesChildren's Hospice International
901 North Washington Street, Alexandria, VA 22314
(800) 2-4-CHILDEpilepsy Foundation of America
4351 Garden City Drive, Landover, MD 20785
(800) EFA-1000
http://www.efa.org/
Foundation for Children with Aids
55 Dimock, Roxbury, MA
(617) 442-7442Juvenile Diabetes Foundation International
432 Park Avenue South, Sixteenth Floor, New York, NY 10016
(800) 533-2873National AIDS Hotline
(800) 342-AIDS
Operates twenty-four hours a dayNational AIDS Information Clearinghouse
P.O. Box 6003, Rockville, MD 20850
(800) 458-5231National Easter Seal Society
70 East Lake Street, Chicago, IL 60601
(800) 221-6827National Organization on Fetal Alcohol Syndrome
1815 H Street NW, Suite 710, Washington, DC 20006
(800) 666-6327National Pediatric HIV Resource Center. Children's Hospital of New Jersey,
15 South Ninth Street, Newark, NJ 07107
(201) 268-8251National STD Hotline
(800) 227-8922
Operates from 8 A.M. to 11 P.M. Monday through Friday, eastern standard time
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