NICHCY Connections...
to the Disability Community

NICHCY is pleased to connect you with sources of assistance within the disability community. We hope that you'll find information here that's helpful in addressing your individual concerns. You can also take a look at our other Connections pages.

The list below isn't intended to be exhaustive of the resources available. We'll be adding to this page constantly, so you may wish to check back monthly to see what's new! New entries will be marked with a .

• NICHCY offers disability fact sheets on the following disabilities, at:
  www.nichcy.org/disabinf.asp
  

  AD/HD, Autism/PDD, Cerebral Palsy, Deafness / Hearing Impairments, Down Syndrome, Emotional Disorders, Epilepsy, Learning Disabilities, Mental Retardation, Pervasive Developmental Disorders (PDD), Severe/Multiple Disabilities, Speech/Language Impairments, Spina Bifida, Traumatic Brain Injury (TBI), Visual Impairments.




• How does your state define these disabilities?
  http://www.nasdse.org/publications/disability_categories.pdf
  Find out your state's policies in Project FORUM's report, Disability Categories: State Terminology, Definitions & Eligibility Criteria (2004)
, available at the link above.


• Information in Spanish?
  Yes! We have it. Visit our disability information page in Spanish, located at: www.nichcy.org/pubs/spanish/spandis.asp. Also visit our two new Spanish language resource pages that'll connect you to Spanish materials about (1) specific disabilities and (2) disability topics.
These pages are available in both English and Spanish.


• Didn't find what you were looking for?
  If you're looking for information on a disability NOT covered by one of our fact sheets, please do write us (nichcy@aed.org) or call us in English or in Spanish. We have a lot of information to share on other disabilities.
  



• Looking for information on a rare disorder?
  Contact:
  
  • the National Organization for Rare Disorders (NORD), at 1.800.999.6673, and:
    www.rarediseases.org
  
  
  
  • the Office of Rare Disorders at the National Institutes of Health, at:
    http://rarediseases.info.nih.gov/
  
  
  
  • the Genetic and Rare Diseases Information Center, which is a part of the Office of Rare Disorders and which answers questions from the general public, including patients and their families, health care professionals and biomedical researchers. Call toll-free at: 1.888.205.2311 (Voice), 1.888.205.3223 (TTY).
    
  
  
  • DiseaseInfoSearch, for information on specific genetic conditions, at:
    http://geneticalliance.org/ws_display.asp?filter=diseases
  
  
• One-stop searching across a spectrum of health and disability conditions.
  www.nichcy.org/resources/galore.asp#health
  There are numerous sites that provide medically based information about health conditions and disabilities. We've listed them under a separate A-Z page, but you can quickly go there (the link above will take you) and search to your heart's content.
  

• Looking for an organization focusing on a specific disability?
  Visit our "Search for Information" page (at www.nichcy.org/search.htm) to see if there's an organization specializing in that disability. (Hint: If you can't find one, give us a call at 1.800.695.0285. Maybe we can help.)
  


• Just wanna know what's out there?
  We offer a National Resources list and a Toll-free Numbers list, to help you find disability information and disability organizations. Both can be accessed from:
  www.nichcy.org/general.asp
  


• Try the government's resource list.
  DisabilityInfo.gov is the comprehensive Federal Web site of disability-related government resources. You can find out about government disability programs and benefits, the Americans with Disabilities Act (ADA), the 2002 Red Book on Work Incentives and Employment Supports, Career One-Stops, Employment, Education, Housing, Transportation, Health, Income Support, Technology, Community Life, and Civil Rights.
  

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The TA&D Network refers to the Technical Assistance and Dissemination network funded by the U.S. Department of Education, Office of Special Education Programs (OSEP). There are more than 40 information centers set up to offer assistance on special education and disability topics.

NICHCY is one such center. Others focus on early childhood, special education finance, learning disabilities, mediation, minorities, outcomes, transition, IDEA, and on and on.

• Would a fast guide to the TA&D centers help?
  The Federal Resource Center on Special Education (FRC) has a list of all the centers, their contact information, and Web site addresses. Find this handy guide online at: www.rrfcnetwork.org/content/view/137/192/
  
  
• Publications, publications, publications!
  NICHCY offers online access to the TA&D resource library, with descriptions of all TA&D publications, CDs, videos, research articles, and disability briefs. Search the library at: www.nichcy.org/search.htm
  

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• What do parents experience?
  www.nichcy.org/newsdig.asp
  NICHCY offers a 16-page publication called Parenting a Child with Special Needs. A Spanish version, called Cómo Criar un Niño con Necesidades Especiales, is also available. The publication is written primarily for parents new to the disability experience and shines a light upon emotional reactions that parents may experience and the lessons others have learned. You don't have to be a parent of a child with disabilities, though, to find this document illuminating. If you're working with parents, this publication opens a window into what it means to have a child with a disability.
  
  
• Need others to be more aware of what it means to have a disability?
  www.nichcy.org/pubs/bibliog/bib13txt.htm
  Classrooms, day care centers, scout troops, clubs...any place children come together. NICHCY's Disability Awareness can connect you with curriculum, books, children's books, videos, and posters or other merchandise developed specifically to foster disability awareness.
  

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• Key concepts of accessibility.
  www.nod.org/
  The National Organization on Disability (NOD) sheds light on the many dimensions of accessibility: economic, social, medical/health care, religious, political, housing...these are just a few areas of concern to individuals with disabilities.
  
  
• What's the ADA require?
  The ADA is the Americans with Disabilities Act, a law which requires that persons with disabilities have access to public accommodations, including hotels, restaurants, theaters, retail stores, parks, zoos, transportation terminals, and other facilities open to the public. Ten regional centers on the ADA exist to provide information about the law and its accessibility requirements. These are known as DBTACs--Disability and Business Technical Assistance Centers. Enter the DBTAC network with a phone call to 1.800.949.4232 (V/TTY) or visit: www.dbtac.vcu.edu/.
  


• Removing physical barriers to accessibility.
  The Architectural Barriers Act of 1968 requires that facilities designed, constructed, or altered with federal funds comply with certain accessibility standards. Find out more by visiting the Access Board, at: www.access-board.gov
  


• Addressing barriers to employment.
  If you're an employer and need information on the practical steps employers can to make accommodations for the functional limitations of employees and applicants with disabilities, you'll love JAN, the Job Accommodations Network. JAN's services are free and numerous and very, very helpful. Visit JAN at: www.jan.wvu.edu
  


• Access to educational curriculum and learning.
  Heard of the universal design for learning (UDL)? If not, take the Universal Design for Learning Web Tour, brought to you by the National Center on Accessing the General Curriculum. The tour's available at: www.cast.org/ncac
  


• A research synthesis on Universal Design for Learning.
  What is All the Buzz about Universal Design for Learning? is available online at:
  www.rrfcnetwork.org/content/view/250/361



• Web site accessibility.
  What makes a Web site accessible to visitors with disabilities? How is an accessible Web site created and maintained? Learn from the experts, the World Wide Web Consortium (W3C), whose Web Accessibility Initiative (WAI) includes substantial resources and guidance online. Go to: www.w3.org/WAI/about.html



• Section 508.
  The W3C is a great place to begin, but there's more to the story (naturally!). Section 508 of the Rehabilitation Act, as amended, requires that Federal agencies' electronic and information technology is accessible to people with disabilities. You'll need to know Section 508 requirements and strategies for compliance, which you can easily find out at the official 508 Web site, at: www.section508.gov
  
  
• Bobby, the helpful accessibility cop.
  Bobby is a free online service that allows you to test web pages and identify and repair barriers to accessibility within existing accessibility guidelines, such as Section 508 and the W3C. Go under Bobby's scrutiny at: http://bobby.watchfire.com/bobby/html/en/index.jsp
  
  
• There are so many types of access!
  This list of connections to accessibility information and strategies could go on and on and on. Here are a few last, quick links, for accessiblility to...
  
  
  • ...higher education: The Association on Higher Education And Disability (AHEAD) exists to upgrade the quality of services and support available to persons with disabilities in higher education. Take advantage of their resources and services, at: www.ahead.org
    
    
  • ...housing: Visit HUD, U.S. Department of Housing and Urban Development, at: www.hud.gov/groups/disabilities.cfm
    
    
  • ...information technology in education: Visit the National Center on Accessible Information Technology in Education (AccessIT), at: www.washington.edu/accessit/index.php
    
    
  • ...recreation: Visit the National Center on Accessibility, which promotes access for people with disabilities in recreation, at: www.ncaonline.org/index.shtml
    
    
  • ...transportation: Who better than the U.S. Department of Transportation to tell you about accessible transportation, at: www.dot.gov/citizen_services/disability/disability.html
    
    
  • ...worship: Benefit from the Religion and Disability Program of the National Organization on Disability (NOD), described at: http://www.nod.org/index.cfm?fuseaction=Page.ViewPage&PageID=9&. Download a 50-page guide, called "Accessible Faith: A Technical Guide for Accessibility in Houses of Worship," from: www.rrf.org/noteworthy/accessible.html
    
    

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• Wondering what kind of parent groups are out there?
  www.nichcy.org/parents.asp#pa10
  We offer a quick read on the subject: Accessing Parent Groups and its Spanish version Acceso a los Grupos de Padres.
  


• Sometimes only another parent can help.
  To talk with another parent whose child has the same disability as yours, let Parent to Parent connect you. Find them at: www.p2pusa.org. (Wondering what Parent to Parent is? Read our Parent to Parent Support and find out what this program has to offer. In Spanish, this publication is called Apoyo Padre a Padre. Both can be accessed from: www.nichcy.org/basicpar.asp#bp2)
  


• Looking for a nearby parent group on your child's disability?
  There are lots of parent groups organized around specific disabilities. If you're looking for one in your neck of the woods, either call us or take a look under "Disability-Specific Organizations" in our State Resource Sheets, at: www.nichcy.org/states.htm
  


• The special expertise of your state's PTI is at your fingertips.
  Give your state's PTI (that stands for Parent Training and Information Center) a call when you want to find out about education rights in your state, learn how to advocate for your child, find local resources, or get expert advice on parenting a child with a disability. Find your state's PTI by looking at our State Resource Sheets or by checking out the PTI listings on the central PTI site at the Alliance, at: www.taalliance.org/Centers/PTIs.htm. And read all about what PTIs do for parents and children in our publication Parent Training and Information Centers, at: www.nichcy.org/pubs/basicpar/bp3txt.htm
  


• How 'bout the PTA?
  The National Parent Teacher Association (PTA) offers both information and local organizations to help parents stay involved in the lives of their children--those with disabilities, too! To find your state's PTA, visit the national site at www.pta.org or look at our State Resource Sheets under "Organizations Especially for Parents."
  
  
• For adoptive parents, there's...
  
  • the Child Welfare Information Gateway, at:
  
  www.childwelfare.gov/
  
  
  • the National Adoption Center, at: www.adopt.org
  
  
  
  • the National Child Welfare Resource Center for Adoption, at:
    www.nrcadoption.org/

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• Electronic connections.
  Try NICHCY's Zigawhat! site, where children with disabilities can learn about their disability (and others!), connect with other kids, read tips just for them, have fun and play games, and tell their story. Zig into Zigawhat at: www.nichcy.org/kids/index.htm.
  
  
• Sibling support.
  Kids who have brothers and sisters with special needs have needs of their own. Wanna know more?
  
  
  • There's Soda Pop Online, which stands for: Siblings of Disabled (Kids) and Peers Offering Promise. This online space is made for kids and teenagers who have a sibling or friend with a disability. Take a sip at: www.sodapoponline.org/
    
    
  • Visit the Sibling Support Project . The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. Find out more about holding a Sibshop and search the database of over 350 existing Sibshops and other sibling programs across the United States, Canada and beyond, all at:
    www.siblingsupport.org/
    
  
  

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• For general disability statistics.
  Contact the Disability Statistics Rehabilitation, Research and Training Center at: 415. 502.5210, distats@itsa.ucsf.edu, or visit their Web site at: www.dsc.ucsf.edu.
  The DSRRTC has the most recent published sources of statistical data on disability, including such products as Disability Statistics Reports and Disability Statistics Abstracts. Data cover demography; epidemiology; health services use, costs, and coverage; employment and earnings; and social services and benefits. Data are also available on the following national programs: vocational rehabilitation; Medicaid and Medicare; veterans programs; Social Security (SSDI and SSI); and special education.
  


• Also for general disability statistics.
  www.ilr.cornell.edu/edi/disabilitystatistics/
  DisabilityStatistics.org, a project of Cornell University, has combined data from a variety of sources to provide a user-friendly, comprehensive, disability statistics Web site. The site contains useful documents such as state status reports, census data, and information about the data sources and issues affecting disability statistics. Portions of the Web site require users to complete a free registration process.
  


• For health statistics.
  Here are two resources: (a) The National Center for Health Statistics, which offers "fast stats" on disability at: www.cdc.gov/nchs/fastats/disable.htm, and (b) the Maternal and Child Health Information Resource Center (MCHIRC), at: 202.842.2000, mchirc@hsrnet.com, http://www.mchb.hrsa.gov/mchirc/. For statistics on many child-related topics, go to "View Child Health USA 2002," at: http://www.mchb.hrsa.gov/mchirc/chusa
  
  
• For disability-related education statistics.
  Every year, the U.S. Department of Education, Office of Special Education Programs (OSEP), prepares a report for Congress on the implementation of the nation's special education law, the Individuals with Disabilities Education Act. These reports always come with impressive data tables about the numbers of students with disabilities served under IDEA, their disabilities, their educational placements, their teaching staff, and so on. Find OSEP's annual reports to Congress online at: www.ed.gov/about/reports/annual/osep/index.html
  


• For diverse education statistics.
  The National Center for Education Statistics collects and analyzes data related to education in the United States. This includes children with disabilities. Visit the NCES site at http://nces.ed.gov/ and search, for example, using the term "disability." Search results will include how many children with disabilities are being served under federal disability programs, how many exit from high school, the numbers that enroll in postsecondary education...and more.
  


• For statistics on the participation of people with disabilities in American life.
  The National Organization on Disability (N.O.D.), in cooperation with the Harris Poll, is a source of timely survey research data on people with disabilities in American life. Visit the "stats" part of NOD's site at: http://www.nod.org/index.cfm?fuseaction=page.viewPage&pageID=31
  

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• You tell us, please! What disability topics should we add to this list of Connections? Drop us a line at: nichcy@aed.org
  
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