NICHCY Connections...to Info Galore

Help with Specific Disabilities

There are quite a few databases online regarding specific disabilities---and much more information about specific disabilities that isn't in a database! Rather than create a list here that never ends, we strongly recommend that you use these NICHCY resources, all of which are designed to connect you quickly to disability-specific organizations and information.

• Find the organization that exists to focus light, support, and action upon the disability that concerns you.
  www.nichcy.org/search.htm
• Looking for an organization specializing in a particular disability? Visit NICHCY's "Search for Info" page. We have over 1,000 organizations listed, even those focusing on rare syndromes. On the search page, click the box next to "Organizations" and enter your search term. If you don't find what you're looking for, please do give us a call at 1.800.695.0285. Maybe we can help.
  
• Our National Resources list.
  www.nichcy.org/pubs/genresc/gr2.htm
  This list of more than 90 organizations is portable, unlike the database described above! You can xerox it and share it with others, too.
• Our State Resource Sheets.
  www.nichcy.org/states.htm
  One of these days our state sheets will probably also be put in a database you can search, but for now, find your state's sheet and use it to hook up with a wide range of resources in your immediate area---including agencies and organizations focused on addressing the information and service needs related to specific disabilities.

We also recommend these other resources, if you're interested in locating the type of assistance noted.

• Organizations on genetic disorders or rare syndromes.
  Here's a variety of resources that can help.
  
  • DiseaseInfoSearch, for information on specific genetic conditions, at:
    http://geneticalliance.org/ws_display.asp?filter=diseases
  • NORD, the National Organization for Rare Disorders, at:
    www.rarediseases.org
  • the Office of Rare Disorders at the National Institutes of Health, at:
    http://rarediseases.info.nih.gov/
• Wanna talk with another parent whose child has the same disability as yours?
  www.beachcenter.org/
  The Beach Center on Disability can connect you to the Parent to Parent program in your state. From the home page link above, click on "Parent to Parent Organizations" and use the map provided to locate your state's program.
• Need help understanding your rights, advocating for your child, or finding resources in your community?
  www.taalliance.org/Centers/index.htm
  Contact your state's Parent Training and Information Center---known as the PTI. At the link above, use the map to indicate your state and be connected to the PTIs that serve you.
• Looking for a self-help organization or group?
  www.mentalhelp.net/selfhelp/
  The American Self-Help Group Clearinghouse offers an online, searchable version of its Self-Help Group Sourcebook. This can be a useful starting point for exploring real-life support groups and networks that are available throughout the world and in your community.

Help within the TA&D Network

The TA&D Network stands for the Technical Assistance and Dissemination network of projects funded by the Office of Special Education Programs (OSEP) at the U.S. Department of Education. This is a network of approximately 40 projects concerned with various aspects of educational and other services to children with disabilities under the Individuals with Disabilities Education (IDEA) Act, our nation's special education law. Each center has a particular focus or field of endeavor. Some maintain databases that you can search online for various types of information, as indicated below.

• Search for publications, Web pages, and other products about disabilities and disability-related issues.
  www.nichcy.org/search.htm
  Again, come to NICHCY. We maintain a resource library online of all the products of the TA&D network. Assessment, behavior, early childhood, transition to adulthood, IDEA, your rights...you name it, it's included!
• Find the early intervention contacts in your state.
  www.nectac.org/search/confinder.asp
  Courtesy of the National Early Childhood Technical Assistance Center.
  Your early intervention contacts include the Part C coordinators, the Section 619 coordinators (that's pre-school), and the ICC (Interagency Coordinating Council) contacts for the state. If you'd like to know the OSEP-funded early childhood projects in your state, visit the Projects Finder, at: www.nectac.org/search/projfinder.asp
• What kinds of testing accommodations are there for students with disabilities, and what are the effects of each?
  www.education.umn.edu/nceo/AccomStudies.htm
  To answer these questions, NCEO (the National Center on Educational Outcomes) offers the Online Accommodations Bibliography database at the link above, where you can search for specific accommodation research studies by typing in keywords related to the accommodation, disability, test content area, or student age.
  
• Looking for info on assistive technology for students?
  www.fctd.info
  Visit the Family Center on Technology and Disability. Find fact sheets and the terrific Family Information Guide to Assistive Technology, available in English and Spanish. Take advantage of FCTD's database of AT, too.
  
• Here's to students with disabilities accessing the general curriculum.
  www.k8accesscenter.org/index.php
  That's what the Access Center is all about. Language arts, math, science...universal design...resources for teaching and learning. State profiles, state policies and practices relating to access...the kitchen sink, too, believe it or not.

General Education Info

• How many students, how many schools, how much money, how are we doing....
  http://nces.ed.gov/fastfacts/
  It's amazing what you can find out about the state of education in the U.S. on NCES's site. That's because NCES is the National Center for Education Statistics and collects and analyzes data related to education in the United States.The link above connects you NCES Fast Facts, where you won't have to search any databases at all to take advantage of all the databases they've created and the in-depth research analysis they've done.
• Use the core of common data (CCD) to find what you're looking for about public education.
  http://nces.ed.gov/ccd/search.asp
  Courtesy of the National Center for Education Statistics (NCES).
  The CCD contains much useful data in databases and downloadable files. NCES has developed powerful application tools to assist everyone from the casual browser to the serious researcher to search for and extract the information they need. The link above will connect you to many, many searching choices, including (but not limited to):
  
  • National Public School Locator: Find information on public schools across the U.S.
    
  • School District Locator: Find information on all school districts across the U.S.
    
  • Search for Private Schools: Find information on private schools across the United States.
    
  • COOL (College Opportunities On-line): Find information on colleges and other postsecondary schools.
    
  • Public Library Locator: Find information on public libraries.
    
  • CCD Build a Table: Create your own customized tables of CCD public school data using multi-years of data.
    
  • School District Demographics: Access demographic information for all U.S. public school districts.
    
  • Schools and Staffing Survey (SASS) Item Bank: Search responses from past SASS questionnaires.
    
• Information by state.
  www.ccsso.org/Projects/accountability_systems/state_profiles/864.cfm
  The link above takes you to CCSSO (Council of Chief State School Officers), where you'll find information on:
  
  • selected state policies (e.g., graduation requirements, state content standards, time and attendance policies);
  • educational programs within states (e.g., math and science indicators),
  • state assessments (e.g., exemption criteria, accommodations for assessments, policy for reporting scores of students accommodated), and
  • state demographic data (e.g., school enrollment, race/ethnicity, student characteristics, student outcomes, high school dropout rate, postsecondary enrollment).
    
• No Child Left Behind---what are your state's policies on key requirements, and how's your state performing?
  http://nclb2.ecs.org/Projects_Centers/index.aspx
  ?issueid=gen&IssueName=General
  Among other scads of information, the Education Commission of the States (ECS) offers the National Grid database, which tracks each state's progress on meeting all NCLB requirements.
  
• What information must the public be told about how their state, district, or school is doing with respect to NCLB?
  www.schoolmatters.com/
  SchoolMatters is a great place for parents, educators, and leaders to research information about public schools and to find the tools they need to make better-informed decisions that improve student performance. At the School Matters, you can find out the school, district, and state information required to be publicly reported under NCLB. State snapshots are also available.
• For articles, reports, journals, and quick access to our accumulated knowledge on just about any education subject---try the ERIC system.
  www.eric.ed.gov
  ERIC is an acronym for the Educational Resources Information Center. The ERIC database contains descriptions of over 1 million educational materials, including articles published in journals and related to children with and without disabilities.
• Also try the Educator's Reference Desk.
  www.eduref.org/index.shtml
  Through The Educator's Reference Desk, you can access AskERIC's 2,000+ lesson plans, 3,000+ links to online education information, and 200+ question archive responses.
  
• The Regional Educational Laboratory Programs can lead you to a wide range of resources.
  http://ies.ed.gov/ncee/edlabs/
  The Regional Labs---there are 10 of them---work together and individually to help educators, policy makers, and communities improve schools and help all students attain their full potential. Funded by the U.S. Department of Education, they provide information about exemplary and promising programs, as well as other important lessons about school reform developed or learned in one site. Each has a "leadership area" of emphasis. Pick your poison among: educational leadership, educational technology, standards-based instructional practice, teaching diverse students, re-engineering schools for improvement, curriculum and instruction related to reading and language mastery, expanded learning opportunities, family and community involvement, and assessment of educational achievement. At the link above, you can search all of their sites at the same time, or connect with any one of them at will.
• Find a literacy program in your community.
  www.nifl.gov/
  NIFL is the National Institute for Literacy, and its site overflows with resources. NIFL maintains a database of literacy programs that you can search to find one in your neck of the woods.
• What's effective in dropout prevention?
  www.dropoutprevention.org/scripts/search/libsearch.asp
  Search the resource library at the National Dropout Prevention Center and find out!
  
• What works to support inclusive urban communities, schools, and families?
  http://www2.edc.org/urban/library.asp
  Search the resource library at the Urban Institute (National Institute for Urban School Improvement ) in specific categories, including: race and ethnicity in urban schools, family and community life, disability and special education, research methods and issues, inclusive schools and communities, excellence in urban schools, curriculum and instruction....and many more.
  

Special Education Info

• For special 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 more special education statistics.
  www.ideadata.org/
  Visit the link above for the most recent data about children with disabilities served under the Individuals with Disabilities Education Act (IDEA). .
• Find out what projects the Office of Special Education Programs is funding.
  www.nichcy.org/directories/intro2006.asp
  Did you know that OSEP funds nearly 1000 discretionary projects? Find out what they're up to, at the link above.
• Break down OSEP's funding just to its transition grants.
  www.transitioncoalition.org/
  Courtesy of the Transition Coalition at the University of Kansas.
  This database contains information regarding transition-related projects administered by the U.S. Department of Education, Office of Special Education Programs, 1996 to Present. From the link above, select "Transition Grants."
• Who are the transition contacts in your state?
  www.ncset.org/stateresources/default.asp
  Visit NCSET (National Center on Secondary Education and Transition) to find contact information for the following education-related offices for all states and territories in the United States: state transition coordinator, RRC office contact, state director of special education, monitoring and state improvement planning Part B contacts, Rehabilitation Services Administration (RSA) transition contact, and state director of vocational rehabilitation.
• Community-Based Transition Programs for Students Ages 18-21.
  www.transitioncoalition.org/
  Courtesy of the Transition Coalition at the University of Kansas.
  The 18-21 Programs: Community-Based Special Education Programs database contains descriptions of over 100 community-based transition programs throughout the United States. From the Web page, select "18-21 Programs."
• The ERIC system includes info on special education.
  www.eric.ed.gov
  ERIC is an acronym for the Educational Resources Information Center. The ERIC database contains descriptions of over 1 million educational materials, including articles published in journals and related to children with and without disabilities.
  
• Need a special education mediator----or ARE you one?
  www.directionservice.org/cadre
  Visit CADRE's site and find two special education mediation databases: (1) Locate professionals (an online searchable data base of special education conflict resolution professionals); and (2) Locate trainers (an online data base of experienced special education mediation and conflict resolution trainers and consultants).
  
• Looking for a private special education facility?
  www.napsec.org/network.html
  The National Association of Private Special Education Centers (NAPSEC) can help you! Use their Networking Directory to identify a center with the services you need.

Health-Related Info

• To find a spectrum of health-related resources---try this government offering.
  www.healthfinder.gov/
  Healthfinder connects you with a range of health-related resources. The same service is available in Spanish, at: www.healthfinder.gov/espanol/
• Medline connects you quickly to over 650 topics on conditions, diseases and wellness.
  http://medlineplus.gov
  This site is a service of the U.S. National Library of Medicine and offers everything from an online medical encyclopedia to interactive tutorials for patients. Find the same in Spanish, at: http://medlineplus.gov/spanish
  
• More information about health topics of all kinds.
  www.familydoctor.org
  The American Academy of Family Physicians provides this site of "health information for the whole family." Among the databases you'll find are: Search by Symptom, Find a Doctor, Dictionary of Common Medical Terms, Body Mass Index Calculator, and Drug Information Database (both prescription and over-the-counter). For Spanish, go to: www.familydoctor.org/spanish.xml
• Health Information Resource Database.
  www.health.gov/NHIC/
  The Health Information Resource Database includes 1,800 organizations and government offices that provide health information upon request. Entries include contact information, short abstracts, and information about publications and services the organizations provide.
• Interested in newly published health and medical information related to your child's disability or medical condition?
  www.caringparents.org
  CaringParents.org is for all parents who wish to keep on top of the large amount of newly published health and medical information regarding specific medical conditions or general health concerns. Use their comprehensive research service for locating articles critical to your child's health.
• Find a doctor.
  http://webapps.ama-assn.org/doctorfinder/home.html
  AMA Physician Select is provided online by the American Medical Association. This database provides basic professional information on virtually every licensed physician in the United States, including more than 690,000 doctors of medicine (MD) and doctors of osteopathy or osteopathic medicine (DO).
  
• Health care insurance for uninsured children.
  www.insurekidsnow.gov/index.htm
  Did you know that each state has a health insurance program for children? Children who don't have health insurance right now are very often eligible for state medical coverage. The insurance is available to children in working families, including families that include individuals with a variety of immigration status. To find out what your state's policies are, what's covered, and how to apply, call 1.877.543.7669 or find your state at: www.insurekidsnow.gov/states.htm
• Find a community health center.
  www.ask.hrsa.gov/pc/
  Over 44 million people in the United States lack access to primary health care. HRSA (Health Resources and Services Administration) provides a nationwide network of community and migrant health centers and health care for the homeless programs. To identify a service site delivering primary care to underserved populations, visit the link above.
  
• Find mental health services.
  http://mentalhealth.samhsa.gov/databases/
  Courtesy of the Center for Mental Health Services (CMHS), the Locator at the link above connects you with comprehensive information about mental health services and resources useful for professionals, consumers and their families, and the public.
  
• Resources for youth with special health care needs.
  www.hrtw.org/index.html
  The Healthy and Ready to Work (HRTW) project provides information and connections to health and transition expertise nationwide for youth with special health care needs. Use the "site search" on the home page to find a wealth of information.
• Looking for your state's Medicaid office? Eligibility requirements? Other state health insurance offices and info?
  www.cms.hhs.gov/MedicaidEligibility/
  The link above will only get you started at the Centers for Medicare & Medicaid Services. CMS administers the Medicare program and works with states to administer Medicaid and the state CHIP (Children's Health Insurance) Program. (If you're not sure of the difference between Medicaid and Medicare, want to know more about CHIP, or want to explore the world of government-funded health care, start at the beginning of CMS's Web site at: www.cms.hhs.gov/.)
  
• Medicaid and SCHIP benefits.
  www.statehealthfacts.org/cgi-bin/healthfacts.cgi?
  Search this online database to find information on Medicaid and SCHIP benefits in the 50 states, DC, and the U.S. territories, including medical benefits, populations and services covered, limits, co-payments, and reimbursement methodologies. The database is searchable by Medicaid benefit as well as by state.
• The "Medicaid Clearinghouse."
  www.familiesusa.org/
  Families USA is working to achieve high-quality, affordable health care for all Americans. For state-specific information on Medicare, Medicaid, children's health, and managed care, as well as state contacts, visit: www.familiesusa.org/site/PageServer?pagename=States_States1.
• Rehabilitation.
  www.naric.com/
  Courtesy of NARIC, the National Rehabilitation Information Center.
  NARIC offers an online searchable database of more than 300 projects funded by NIDRR (National Institute on Disability and Rehabilitation Research), including their products. If you want to know about disability, rehabilitation, and promoting independence and employment for individuals with disabilities, NARIC is the place to visit.
• State-level school health policies database.
  Courtesy of NASBE (National Association of School Boards of Education.
  http://www.nasbe.org/HealthySchools/States/State_Policy.asp
• Mental health in schools.
  Starting in 1995, two national training and technical assistance centers were established to improve how schools address barriers to learning and enhance healthy development. Each of these centers is a source of information and technical assistance regarding mental health in schools. Take advantage of each of their databases, materials, and expertise:
  
  • Center for Mental Health in Schools, UCLA
    http://smhp.psych.ucla.edu
    Under "Search and Quick Find" in the main menu, you can search the Center's resources for just about everything but the kitchen sink related to mental health in schools.
  • Center for School Mental Health Assistance, University of Maryland
    http://csmha.umaryland.edu/
    This center maintains a library of resource materials including reprints, articles, and publications specific to school-based mental health. It also offers a comprehensive directory of school mental health programs around the world. At the moment, they're working to upgrade their Web site, which is limiting what's available via the Internet, but hopefully soon we'll be able to access their resource collection online.
• Databases re: Native American health.
  http://hsc.unm.edu/library/nhd/
  The Native Health Databases contain bibliographic information and abstracts of health-related articles, reports, surveys, and other resource documents pertaining to the health and health care of American Indians, Alaska Natives, and Canadian First Nations.
  
• Databases re: Asian American health.
  http://asianamericanhealth.nlm.nih.gov/
  This Web resource on Asian American Health, sponsored by the National Library of Medicine, is designed to increase public awareness of the health concerns of Asian Americans in the United States. Links are provided to an assortment of documents, Web sites, databases, and other resources.
  
• What clinical trials are being conducted?
  www.clinicaltrials.gov/
  Find out about federally and privately supported clinical research in human volunteers via clinicalTrials.gov, whichgives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.
  
• Find a hospital hospitality house.
  www.nahhh.org/lodging.php
  The database online at the National Association of Hospital Hospitality Houses can help patients and their families find lodging and other supportive services when confronted with medical emergencies.
  

Working and Community Living

• Helpful laws, including the ADA.
  www.ADAportal.org
  Visit the ADA Document Portal, which houses the ADA Collection consisting of about 3,400 documents organized into the following categories: employment, state and local government, public accommodation, transportation, facility access, communications, interpretation, and enforcement. The Portal also provides links to additional collections (over 15,000 documents), including those pertaining to related legislation (such as the Fair Housing Act, the Air Carrier Access Act, IDEA, and Section 508); federally supported information services (such as the Job Accommodation Network, Project Action, Accessible IT in Education, disabilityinfo.gov); and ADA agencies.
• Job seekers and employers both---try your community's one-stop center.
  www.careeronestop.org/
  Find jobs--from entry level to technical to professional to CEO. Identify job-ready workers with the right skills. Locate public workforce services in your area. Explore alternative career paths, compare salary data for different occupations, learn which careers are hot, get resume writing tips and job interview strategies, and much more! Here are some of the databases available through the one-stop center system:
  
  • Find the nearest one-stop center.
    www.servicelocator.org/
    
  • Job Bank.
    www.ajb.org/
    
  • Career InfoNet.
    www.acinet.org/acinet/default.asp
    Find wages and employment trends, occupational requirements, state by state labor market conditions, millions of employer contacts nationwide, and the most extensive career resource library online.
    
  • Scholarships Search (for education).
    www.careertools.org/scholarship/
• Don't forget about vocational rehabilitation services.
  www.jan.wvu.edu/SBSES/VOCREHAB.htm
  By contacting your local vocational rehabilitation office, you can tap into a wealth of resources related to employment options for people with disabilities. VR is a state-supported division of services designed to assist individuals with disabilities who are pursuing meaningful careers.
  
• Accommodations in employment.
  www.jan.wvu.edu/
  The Job Accommodation Network (JAN) brings together information from many sources about practical steps employers have been taking to make accommodations for the functional limitations of employees and applicants with disabilities. JAN's Searchable Online Accommodation Resource (SOAR) system is designed to let users explore various accommodation options for people with disabilities in work and educational settings.
  
• Research-based resources from the National Center for the Dissemination of Disability Research (NCDDR).
  www.naric.com/research/pd/
  NCDDR works with more than 430 disability and rehabilitation research teams and product developers funded by the National Institute on Disability and Rehabilitation Research (NIDRR). At the link above, find lots of databases to search and resources to uncover.
  
• Find the independent living centers in your state.
  www.ncil.org
  The link above will take you to the National Council on Independent Living, which maintains a national directory of independent living centers.
  
• Find your state's independent living council (SILC).
  http://www.ilru.org/html/publications/directory/index.html
  Courtesy of the Independent Living Research Utilization (ILRU) Project.
  Each state has a SILC, which is responsible for collaborating with the state vocational rehabilitation agency to develop the state independent living plan--including determining use of independent living funds and monitoring, reviewing, and evaluating implementation of the state plan. Find your SILC at the link above.
  
• What technology is available to support independence?.
  Find out about assistive technology, adapted toys, and devices that promote independence from any of these resources:
• • ABLEDATA
    www.abledata.com/
    This database of more than 20,000 commercially available rehabilitation products from more than 3,000 companies, includes personal care, therapeutic, recreation, sensory, educational, vocational, and transportation aids.
    
  • Enabling Devices.
    http://enablingdevices.com/
    At the home page above, your choices are Toys for Special Children and Products for Independent Living.
    
  • Alliance for Technology Access (ATA).
    www.ataccess.org
    The ATA centers that can be found across the country help children and adults with disabilities, parents, teachers, employers, and others to explore computer systems, adaptive devices, and software. Use their database, the Hub, to locate and receive information on assistive technology products and services offered by the ATA members.
    
  • AssistiveTech.net.
    www.assistivetech.net/search/index.cfm
    This site offers four ways to search for assistive technology: (1) Function/Activity Search, where you select from the categories of functional limitation and activities; (2) Keyword Search; (3) Product Type Search (select from the categories of product types); and (4) Vendor Search (select from the list of vendor names).
    
  • Reviews and connections.
    www.fctd.info/resources/search.php
    At the Family Center on Technology and Disability (FCTD), you will find hundreds of reviews of assistive technology resources such as books, newsletters, training manuals, software and Web sites. You can search by categories (e.g., accommodations, mobility aids, augmentative communication aids) crossed with disability (e.g., AD/HD, visual impairment) to locate resources addressing your particular concerns.
• Find technical assistance resources on independent living.
  www.dimenet.com/ilrulib/ilruta/
  The ILRU Technical Assistance Resource Database is available at the link above. Each record within the database contains an individual's name, contact information, and a list of all topics on which the individual is able to provide technical assistance. Categories include: independent living center management; independent living services; staff development; services for diverse populations; resource development/funding diversification; board development; state independent living councils; computer applications; and disability rights.
  
• What about recreation?
  www.ncpad.org/
  Visit NCPAD (National Center on Physical Activity and Disability) and delve into their virtual library. In particular, you'll like their factsheets that take a quick look at a variety of recreation, leisure, fitness, and sports activities and how they have been adapted to the needs of people with disabilities.